10 11. 12 13 14 15 16 17 18 19 20 21 22 23 24 25 SATIONAL COMMISSION ON AIDS CONFERENCE ON HIV INFECTION AND AIDS IN CORRECTIONAL FACILITIES 5 Penn Plaza New York, NY August 17, 1990 9:00 a.m. TANKOOS REPORTING COMPANY 11 John Street 223 Jericho Turnpike New York, N.¥. 10038 .. Mineola, N.Y. (212) 349-9692 (516) 741-5342 COMFUTER AIDED TRANSCRIPTION/keyword index = mH iW & ww 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 COMMISSIONERS DR. JUNE OSBORNE, Chairperson DR.” DAVID ROGERS COMM. SCOTT ALLEN DR. JAMES ALLEN DR. CHARLES KONIGSBERG COMM. HARLON DALTON COMM. DIANE AHRENS COMM. EUNICE DIAZ COMM. LARRY KESSLER DR. DON DesJARLAIS MAUREEN BYRNS, Director 000 WITNESSES INTRODUCTION. TO CORRECTIONS MARK LOPEZ, ESQ. EPIDEMIOLOGICAL PERSPECTIVE DR. KENNETH G. CASTRO HEALTH CARE IN THE CORRECTIONAL SETTING DR. ROBERT COHEN DR. KENNETH MORITSUGU ISSUES IN CORRECTIONS: STATE EXPERIENCES ALEXA FREEMAN, ESQ. - Alabama DR. GERMAN V. MAISONET - California CATHERINE HANSSENS, ESQ. - New Jersey MICHAEL WISEMAN, ESQ. - New York WOMEN AND HIV INFECTION BRENDA SMITH, ESQ. MS. MARILYN RIVERA Page 16 36 86 94 107 116 133 140 COMPUTER AIDED TRANSCRIPTION/keyword index in om —hUhGhOND 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 WITNESSES (Afternoon Session) PRESENTATION OF INMATE STATEMENTS AND AFFIDAVITS MS. JUDY GREENSPAN 157 INMATE ACCESS TO CLINICAL TRIALS DR. ROBERT J. LEVINE 176 DR. VICTORIA SHARP 183 MS. ANN GRAHAM 190 MR. BILLY JONES 195 HIV/AIDS EDUCATION MR. LEWIS TANNER MOORE 215 MS. SHARON A. LETTS 223° MR. EDWARD A. HARRISON 229 MR. JOSE C. HERNANDEZ 236 COURTS, INMATES AND HIV/AIDS POLICY MAKING THROUGH LITIGATION HON. RICHARD T. ANDRIAS 253 SCOTT BURRIS, ESQ. 259 J. L. POTTENGER, ESO. 267 HIV/AIDS RELEASE POLICIES CATHY POTLER, ESQ. 291 ROMEO SANCHEZ 299 PUBLIC COMMENT ANNA FORBES 311 JUDY GREENSPAN 317 COMPUTER AIDED TRANSCRIPTION/keyword index oO Oo Se Ww WD 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 PROCEEDINGS DR. OSBORNE: Let me ask people to take their seats. I think we're certainly set to start, we can make the arrangements following. The Commission is hearing the first witness. While we’re getting organized, I want to announce that there will be a sign language interpreter there at the far end of the table, and so those who would like to be able to participate in having the interpretation can organize themselves down that way and thank you very much for being with us. I also want to do a little bit of Commission business. With the indulgence of our guests, it was one year ago today that the Commission met briefly to validate our selection of Maureen Byrnes as the executive director, and we thought that we should commemorate that appropriately, so we have a little something for you, and we'd appreciate it if you would look at it right now, at least I would. Hold on it up. It says "Property of New York City jails.” (Applause. ) COMPUTER AIDED TRANSCRIPTION/keyword index & Ww N oOo Ss DD WN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 5 DR. OSBORNE: On behalf of the Commission, thanks for a magnificent’s year work and another magnificent year to come. MS. BYRNES: Thank you very much. DR. OSBORNE: This morning we'll start off with Mark Lopez as our first witness with an introduction of corrections, and I will repeat this from time to time, but if we could ask people who are speaking--and Kenneth Castro will be talking about epidemiologic perspective. Tf I could ask the witnesses to limit their remarks to at most ten minutes. We'll put a little timer to go off at about eight to give you a sense of how you’re doing in time. This Commission tends to be e lively group and asks lots of questions and that will give us a chance to interact with the witnesses and that’s always the most helpful part. If you have given written testimony, we have read it if you gave it to us before, or we will read it, so you can feel free to condense that part of your testimony or add anything if you would like. That's a good way to go. Welcome, and thanks for joining us. MR. LOPEZ: Thank you for inviting me. COMPUTER AIDED TRANSCRIPTION/keyword index 10 1l 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings ily name is Mark Lopez, I work with the National Prison Project of the American Civil Liberties Union, a membership organization committed to the progression of civil rights and civil liberties in this country. Membership’s about 300,000. On the national level, we’re made up of various projects, one of which is my own, National Prison Project, and the mandate of our office is to investigate, litigate and then monitor litigation around the country over prison conditions. In our early years, the focus was on practices and policies and conditions. In the. recent years and currently, our focus is exclusively, almost exclusively, with the exception of AIDS work which I consider policy work, almost exclusively concerns conditions of confinement. We probably have pending litigation in 36 states, maybe fifteen very active right now, either going to trial or just out of trial, still in the litigation pipeline. <4 es vself, I’m in seven states in every part of the country. With that said, I'll get to my testimony. A little more than 100 years ago, the COMPUTER AIDED TRANSCRIPTION/keyword index 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 7 Supreme Court of Virginia said that prisoners are a little more than slaves, and during the last five years, on a number of occasions, at least three justices in the United States Supreme Court have questioned whether the majority of the Court was turning the clock back in time when prisoners were indeed treated as slaves. And what happened in those hundred years? Where are we now? Where are we going? I'll try to answer those questions. with the barbaric exception of the death penalty, imprisonment is the largest power that a government exercises on.a regular basis over its citizens. Prisons are total institutions, they have a massive impact on the persons they confine. They control every moment of the prisoner's day and night and eliminate almost any possibility of free choice. In the United States, imprisonment is used far too much. The sentences imposed are far too long; it discriminates based on race and economic status. And many prison terms are served in degrading and brutalizing conditions. In 1972 the population in this country, combined state and federal, was about 175,000. In COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 8 1980 it was 300,000 and change. Today it exceeds 700,000. That represents an increase in the last ten years of about 115 percent, and an increase of about twelve percent over last year. The Significance of that is that our crime rates have not increased proportionately. In fact, our crime rates have been rather level. maybe 2 percent increase in crime rates over those yeers. The color of our prisons is increasingly brown and black; 48 percent minorities and over 90 percent are ae and while prisoners continue to be overwhelmingly male, there are currently 40,000 women prisoners, and their rate of increase has outpaced the male rate of increase every year since 1980. California leads the way. There are almost 90,000 prisoners in the California system. It’s doubled its population in the last five years alone. It has spent over $2 billion on prison construction in the past two years. That $2 billion represents the GNP, a greater amount of dollars than the GNP of e number of our states, or the total budget of a number of our states. Arkansas, a small state by comparison, has 9500 prisoners, more than half the countries of COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 9 western Europe. The states with the greatest rate of increase last year were Rhode Island, Colorado and South Dakota, all approaching 30 percent. Not surprisingly, we are actively litigating conditions in those states. You project out the 30 percent over the last three years. Each of those three states have increased at that rate in the last three years and they've nearly doubled their population in the last three years. The resources to keep pace with that kind of growth have not been pumped in or not on time, so the current situation in those states is you’ve got twice as many folks packed in prisons that were already overcrowded three years ago. This country has the harshest sentencing practices in the free world. Our per capita rate of increase is the highest, with the exception of several eastern European countries and South Africa. For every 100,000 people, over 200 people are incarcerated, and the next closest country is Canada and they’re about 100. And we keep people behind bars two to ten times as long as other countries, and the result is,. COMPUTER AIDED TRANSCRIPTION/keyword index 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 10 as I will explain, is horrendous overcrowding. 37 states, District of Columbia, Puerto Rico, Virgin Islands are operating prison conditions under court orders designed to alleviate overcrowding and deleterious conditions. Serious legal challenges are pending in about fifteen other states. What are unconstitutional conditions and practices? The situation with the young first offender who is assaulted and gang raped, not unusual, you've all heard of it. State prisoner becomes quadraplegic because of improper and inadequate medical care, again, not unusual. Prisoners are forced to sleep on floors in corridors, happening in a number of states today; Rhode Island, Delaware, Puerto Rico, Colorado, New Mexico. As the population increases in these prisons, resources and funds for services have remained flat at the same time. Thus, in the provision of medical and mental health care, resources designed for let’s say 1,000 people are now being spread for two or three thousand people. The result is people are falling through the cracks. In Indiana, a case I’m actively COMPUTER AIDED TRANSCRIPTION/keyword index wm -S® Ww bh 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings ll litigating, because of the unavailability of psychiatric treatment, 200 people live in a forensic unit where the only treatment available is the use of psychotropic medication without psychiatric supervision and the long-term use of restraints and isolation cells. Overcrowding also has an impact on the environmental health and safety of prisons. I think the best analogy I can think of in terms of if we were to talk about plumbing or basic environmental conditions, if you were to camp out a troop of boy scouts in your home for a weekend or for years, you can imagine what kind of effect that’s going to have on the plumbing and on the other conditions in your house, and it does have an impact. So in Puerto Rico, if you were to tour that prison, you would be walking through raw sewage in the tiers adjoining the cell blocks. In Indiana, very similar situation, in the second case I'm involved with in Indiana. 400 cells, over 200 of the cells, the plumbing doesn’t work. So what does that mean? The person has to be pulled out of a cell and use the cells that work, so the problems become worse. COMPUTER AIDED TRANSCRIPTION/keyword index 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 12 Overcrowding also has a very serious impact on levels of violence. This essentially has to do with the inability to properly supervise and to classify and to monitor inmate activity, with the conditions you’ve all read about in New Mexico eight years ago, in Attica, and recently there was a disturbance on Rikers Island. The impact of the civil rights movement in the 1960’s and Attica in 1971 opened up the iron curtain that was drawn between prisons and the Constitution of this country. Historically, there was a hands off approach. In the early prisoners’ rights cases 1962 to 1972, in a series of significant Supreme Court decisions, the Supreme Court made clear that the Constitution does indeed reach-- DR. ROGERS: Mr. Lopez, you've got a couple more minutes. We have your written testimony, which is very powerful. I suggest you sort of talk from your heart in terms of what do you want this Commission to take take way that we can do to be helpful in the situations that you describe. Don’t worry about it, we will indeed read your testimony, and it’s important and don’t be nervous about it. Talk the way you’d like to. COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 13 MR. LOPEZ: If anything, I think what needs to be understood that we’re in a whole lot of trouble in this country about prison overcrowding, and the effect it’s going to have on conditions. We’re facing a serious crisis about issues that should concern all of us. The ability to run a rational corrections System to operate decent prisons that are safe for inmates is being undermined dramatically. In the past few months I or members of my staff have been in about fifteen states and seen the beginning of the ominous fallout from the recent Presidential campaign and from recent Supreme Court decisions which are stressing a "get tough" attitude and "put them away" mentality. I mean to carry no grief for President Bush or for candidate Dukakis. On criminal justice and corrections issues, their behavior ranged from foolish to irresponsible. The manner in which they portrayed the Willie Horton fiasco was disgraceful on both sides. However, public officials received a powerful message from that campaign, be tough on crime and get elected. The result for the public and politicians is to cry out for more, for harsher sentencing. COMPUTER AIDED TRANSCRIPTION/keyword index — Ww ho 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 14 Unless there are major changes, you can safely predict a doubling of the prison population in many states and the federal prison system in the next five or six years. Unless we develop new policies, we will mortgage the future of our country to prison expansion programs, we will go back to running the i9th century prisons that were in effect only fifteen or twenty vears ago. Already many systems are backsliding after many efforts at reform. This is due in large part to the country’s relentless rising prison population, and it’s resulted in an epidemic of overcrowding an increase in vrison violence and riots, a sharp reduction in rehabilitative and medical services and a proliferation of lawsuits challenging these conditions. i would sum up by pointing to two new problems that will receive a good deal of attention in the next immediate years. One concerns the proliferation of litigation arising out of the question of tzreatment for persons with AIDS, and that will be discussed more fully by others today. The other concerns the impact the current sentencing laws are having in terms of the age of the COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 15 population. The age of the-- historically in prison the average age was under 30, that’s moving over 30. In the not very far future it’s going to move over 40, over 50, over 60 and there’s going to be a substantial body of geriatric prisoners taking up bed space. With that become attendant medical problems and other problems associated with providing medical care for these prisoners. Much has been accomplished in the last two decades. Scme of the human warehouses and dungeons that have been the shame of our society have been eliminated. Litigation and other efforts has been the force that has pushed America into the 20th century, but much remains to be done in the next five to ten years to continue to put pressure and to prevent the going backwards. DR. OSBORNE: Thank you very much. That is powerful testimony and succinctly put. If you want to stay there, I think we can get Dr. Castxo to come join you at the table and give his presentation and that way we could ask questions. DR. CASTRO: Good morning. My name is Dr. Kenneth Castro. I work for the Centers for Disease COMPUTER AIDED TRANSCRIPTION/keyword index Ww nh 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 16 Control. I should point out that while the Centers for Disease Control do not routinely collect information on the number of AIDS cases occurring inmates, data are available from several yearly Surveys conducted associations for the National Institute of Justice or NIJ and for HIV seroprevalence sources collected by Johns Hopkins University. Much of the data I will present here today comes from the 1989 update, AIDS and Correctional Facilities. Because of time limitations, I will not address the epidemiology of AIDS outside correctional facilities. Through October of 1989, 5411 confirmed cases of AIDS were reported from the Federal Bureau of Prisons, state prison systems and a sample of 28 to 30 county or city jail systems in the United States. The cumulative number of such cases has steadily increased from 766 inmates with AIDS reported by November of 1985 to 5411 reported by October of 1232, representing a four year increase of 606 percent. Because not all county or city jails were surveyed, this figure represents a minimum estimate of the number of AIDS patients among inmates COMPUTER AIDED TRANSCRIPTION/keyword index Ww WN 10 11 12 13 14 15 16 17 18 19 20 Z21 22 23 24 25 Proceedings 17 in correctional facilities. 45 of the 50 state correctional systems reported at least one inmate with AIDS. However, the distribution of the cases by correctional system is remarkably skewed. This slide shows the range in number, total number and percent of AIDS cases by number of state and federal correctional systems. Note in the last row that over 79 percent of inmates with AIDS were reported from only seven or 14 percent of the 51 systems. If we combine the last two rows, 11, or 22 percent of these symptoms were reported in more than 50 AIDS cases each, and accounted for 87 percent of AIDS in inmates. I should mention that 1,351 of these persons with AIDS were in custody at the time of the October ‘89 survey. This next slide shows a geographic distribution of inmates with AIDS in state prisons. If we combine the first three rows, you will notice that 81 percent were housed in New England, mid-Atlantic and south Atlantic prisons. This next slide shows similar information from a couple of slides ago, this time for 32 city or county jails, which reported 1750 AIDS patients. | Thirty had reported at least one patient with AIDS, COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 18 but again, 74 percent of all such patients were inmates from only three or 9.4 percent of the 32 surveyed facilities. Other sources of information are HIV sero Surveys. They provide essential data to help document the magnitude of this health problem. This slide shows selected HIV seroprevalence studies of incoming inmates abstracted from NIJ’s 1988 survey. Please note the wide variation in obtained results. In the time period 1987 to ‘88, the New York State prison had 17 percent HIV seroprevalence among incoming men, compared with 7 percent in Maryland in 1985. In 1988, the Georgia state prison had 3.2 percent of HIV prevalence in men and 2.4 percent in women. In general, higher seroprevalence rates are found in correctional systems serving geographic jurisdictions with larger number of AIDS cases outside correctional facilities, such as New York, Florida, California, Texas or Illinois. More recently, CDC has collaberated with Johns Hopkins University and NIJ in a study of approximately a thousand consecutive entrants to each of ten different correctional systems throughout the country. Preliminary data were presented by Dr. COMPUTER AIDED TRANSCRIPTION/keyword index Ww NN? 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 19 Barhouse in the 6th International AIDS Conference in San Francisco. While you see here that there was no statistically significant difference in HIV antibody prevalence between prisons and jails, we observed a wide range of results among participating institutions. In general, HIV prevalence rates were higher for females than for male entrants. Among males entering prison systems, these rates range from 2.2 percent to 5.9 percent. For females, they range from 3.2 to 7.8 percent, and among jail systems, these rates range from 2.3 to 7.6 percent for men, and you can see 2.5 to 14.7 percent for women. Again, using the same study, HIV prevalence xates are shown here by gender and a dichotomous age group. Males aged more than 25 years had significantly higher rates than those 25 or younger. Yor female incoming inmates, the infection rates were not Significantly different in these age categories. However, if you took all persons younger than 25 years. females had significantly higher rates than men, and you could see the upper bound of the ranges in that particular group being 15.6 percent infection rate. COMPUTER AIDED TRANSCRIPTION/keyword index WwW NM 10 il 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 20 dIV seroprevalence rates were significantly higher in non-white than white male entrants, as shown in this slide. By the way, the data provided did not allow us to differentiate further and look at other ethnic groups. Non-white female entrants had somewhat higher rates than white females, but this difference is not statistically significant and I suspect this is probably due to the relatively lower number of women sampled. 17 percent of our sample consisted of women or approximately 1700 of the participants. Ancther area of concern had been HIV transmission in correctional facilities. Very few sources of data are available to estimate the extent of this proslem. In Maryland, Brewer and colleagues documented HIV seroconversions in two of 393 inmates. Initially seronegative at intake, for one estimated seroconversion per 244 inmate years. In Nevada, seroconversion occurred in two inmates while in prison for an estimated conversion rate of one per 604 inmate years. ortunately, the possibility that HIV Fh wide infection occurred before entry into the correctional Systems cannot be excluded in either of these COMPUTER AIDED TRANSCRIPTION/keyword index 10 Ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 21 studies. Mandatory screening of releasees from the Federal Bureau of Prisons show lower HIV prevalence rates or 1.5 percent than among entrants. Notice a 2.5 percent for mandatory screening during the years, the first few months, and 2.8 percent among 10 percent of incoming entrants during the ‘88 to '89 time period. suggesting low transmission rates, if any. CDC and the Illinois Department of Corrections a collaborating in a study to more definitively identify the rate of HIV transmission in a cohort of 2400 inmates. Finally, while it appears that HIV transmission cccurs infrequently in correctional systems, the same is not true for tuberculosis. In New York State prison inmates, Dr. Braun and colleagues documented a steady increase in tuberculosis cases from almost 23 per 100,000 inmates during the =ime period 1977 to 1980, to 47 per 100,000 inmates during the 1982-'83 time period and almost 65 pex 100,000 inmates during the ‘84 to '86 year time period. Much of this increase was attributed to COMFUTER AIDED TRANSCRIPTION/keyword index 10 Il 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 22 reactivation cf latent tuberculosis infection as a consequence of the immuno suppressive effect of HIV. It is widely accepted that the HIV epidemic has significantly influenced the resurgence of tuberculosis in various subpopulations in the United States, as shown by the discrepancy between the number of ebserved and expected cases. i= I may explain this slide in more detail, the cotted line at the bottom part of the Slide shows the expected cases of tuberculosis of the trends that were observed from '82 to '83 had continued, anc in red and in the shaded area, you see the axis number af tuberculosis cases of 14,768 occurring between ‘84 and ‘88. DR. ROGERS: Dr. Castro, I want to indicate you re coming to the end of your time period. This is wonderful data, I hope you will-- OR. CASTRO: I only have one more slide. Tt is widely accepted that the HIV epidemic has significantly influenced a resurgence of tuberculosis. Daca on drug users attending methadone maintenance program clinics have convincingly demonstrated a higher susceptibility to develop COMPUTER AIDED TRANSCRIPTION/keyword index 10 li 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 23 active tuberculosis in HIV infected than HIV uninfected persons, as shown by Dr. Selwin and colleagues. You see the rates of development of active TB of 2.1 in the HIV positive versus none observed in HIV negative. The 1989 NIJ survey revealed existing deficiencies in data maintenance on tuberculosis positive rates and on provision of prophylaxive treatment in TB, including those HIV infected inmates. Correctional administrators should pay particular attention to tuberculosis, because it is a Significant HIV associated disease, transmissable through aerosols, and this poses a particular problem in crowded correctional facilities where ventilation is often suboptimum. Thank you. DR. OSBORNE: Thank you very much, and if you would join us more centrally here, give us an opportunity to interact with both Mr. Lopez and Dr. Castro on the substance of the testimony, if the Commissioners have questions. Dr. DesJarlais? DR- DeSJARLAIS: Primarily to Mr. Lopez, but Ken, you may want to comment also. COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 24 It’s clear our prison system is in a disastrous state, it’s overcrowded, inhumane, it’s unconstitutional. It’s also clear that there are many prison systems in Europe that seem to be functioning reasonably well. Clearly, our crime rate has not been dramatically reduced by the way we operate our prisons. Do you see any way we can fundamentally change our system to get closer to a European model where something like adequate health care would be possible, because the system is not in crisis, or are we just sort of stuck with continual expansion, continual overcrowding?. MR. LOPEZ: Yes, I do. One of the things I want the Commission to walk away from here with is the idea that these trends are reversable, though we have to change national policy concerning our commitment to incarcerating people. As I pointed out, our incarceration rates are double and triple that of western Europe and there’s no reason that has to be. Under the new sentencing guidelines, the number of persons who went to prison as first time offenders was like 100 times the way it was the year before the guidelines went COMPUTER AIDED TRANSCRIPTION/keyword index 10 il 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 25 into effect. Historically, those people were left on the street in some form of court supervised capacity. So unless we have a reversal in the “lock them up" mentality, I don’t see that happening. I think we can have a reversal, because it’s going to be very, very expensive. It’s going to at some point outrage the public, you’re going to see right, after right, after right, and also take an economic toll. | I would like to think when we clean up relations with eastern Europe, where are those military dollars going to go? Well, you need to know they’re going into prison construction now. That's going to be very, very expensive, and we’re not buying up those bonds. No one here is buying up the bonds to finance that. Someone is getting rich on that, but it’s not us. Sooner or later, there’s going to be a price tag, there’s going to be a--well, there it is. Americans are going to have to wake up, A, to the cost and two, to the human toll. DR. OSBORNE: Scott? COMMISSIONER S. ALLEN: I have a question, Mr. Lopez, about the increase in interest in the COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 26 privitization of prisons. Does your organization have some public policy concerning that? There’s some serious ethical questions to that and I’m just curious, there’s a push for privitization, and where do you all stand on that? MR. LOPEZ: We're skeptical, I would say. AS an organization, we’re very skeptical, because of the profit motive. Also the history of prisons, it started out as a private enterprise, and they were very exploitive, so drawing from that experience, we/re very skeptical. I will say I was in New Mexico two days ago at the only privately operated prison, I believe it’s the only privately, if not, it’s one of the few, and it’s two years old, it’s a women’s prison which tends to have a lot less of the problems that a male prison has, but in any event, it was to their credit, Corrections Corporation of America, it was running a smooth ship, trom what I could tell. DR. OSBORNE: I just want to underscore with the question, something you did say Dr. Castro, but in addition to the two studies which you presented which showed virtually no in prison transmission, are there others that you’re aware of COMPUTER AIDED TRANSCRIPTION/keyword index Ww 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 27 or anecdotal evidence to either raise that question again or to confirm that finding? And the reason I bring it up, of course, is that early in the epidemic was used as an excuse for a great deal of prison manipulation in order to worry about in prison transmission, and I had been aware of those studies. I was curious if there was anything else in the works. CR. CASTRO: We are now trying to complete the study thet I mentioned with the Illinois Department of Corrections and the data are forthcoming. To me it’s interesting, when you look at the surveys done by ACT Associates for the National Institute of Justice early on, there were very disparate housing policies on no scientific basis. However, the warden felt he or she ought to do things, and over time they demonstrated a’ tendency awey from isolation, and allowing the HIV infected inmates to stay with the general inmate population. art of it is, of course, because they cannot affore because of overcrowding to keep them isolated, anc so it’s most interesting that to me the degree of activity is almost inverse proportional to COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 28 the degree of the problem. These systems with HIV infected population are able te do a lot more. New York City has a lot more and you see in contrast relatively much less action. COMMISSIONER DIAZ: Ken, maybe I missed this, but vou were quoting 3,600 plus actual cases of AIDS at this time; no, 5,000? CR. CASTRO: 5411. That’s a minimum estimate. COMMISSIONER DIAZ: What percent of those are in mincrity groups? eR. CASTRO: _Vast majority. As a matter of fact-- COMMISSIONER DIAZ: What would you say the vast majority, percentage wise? DR. CASTRO: I can’t give you the exact percentile. 7’'1ll refer you to the latest 1989 update on correcticnal facilities by Hammet and Mahoney, or I can give i= to you when we're done here, but I won’t make «> 2a figure. CCMMISSIONER DIAZ: I’m just trying to relate the number that was given by Mark in his talk of 700,000 scersons incarcerated at this time with 48 COMPUTER AIDED TRANSCRIPTION/keyword index 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 29 percent of those individuals are from minority populations, and I just want to draw a parallel with the 5,000 number you gave. What is the percentage? Would you say it’s double that? DR. CASTRO: I wouldn’t want to guess. I could tell you we did see in the serosurveys that nonwhites had significantly higher rates, and while not looking at specific racial or ethnic groups. the rates of AIDS in inmates is roughly about 202 per 100,000, compared to 14-1/2 for the rest of the U.S. population. The descriptor of most of these inmates that is that by and large they’re going to be non-white men, many of them with a history of drug use. COMMISSIONER DIAZ: Thank you. 22. ROGERS: Dr. Castro, we heard some very potent testimony yesterday in terms of really the whole oxison and jail system is really concentrating the HIV positive groups that are very hard to get et and under than optimum circumstances. If I understand you correctly, this is data that’s acquired not by CDC but by other groups COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 30 that you showed us this morning. Why in heaven’s name is not CDC collecting this when it’s probably the’ most critical source of infection as those people move out? Why is CDC not collecting it specifically on the prison population? DR. CASTRO: We have some information, it’s not routinely obtained. It has to do--the sources of information are local and state health departments, and while they will give us information on the resicents, on the patients with AIDS, they may or may not have at that time a history of being incarcerated. Our source of information is not the correctional systems. Taere’s a lot of interest in that. DR. ROGERS: Don’t you think it would be wise to do that? OR. CASTRO: Yes, aS a matter of fact, I’m sorry if I S2iled to reflect that we’ve done the initial serosurvey with Hopkins University through NIJ and we cco intend to continue these to monitor trends over time through the local health departments and yes, we will have additional information. DR. OSBORNE: I give the last word to Diane Ahrens. COMPUTER AIDED TRANSCRIPTION/keyword index 10 li 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 31 COMMISSIONER AHRENS: Dr. Castro, I understand, and following up on David’s question, that your normal sources of information and Statistics are through the Department of Health and Human Services. However, we have here really the epidemic focused in on the prison system in this country, both at the local and the state and the federal level, and I’m just wondering, even beyond the data collection system that you have, is CDC doing anything else or how is CDC working with the Department of Justice to establish some policies and Standards with respect to the correctional system vis-a-vis the epidemic expressed in that system? DR. CASTRO: Well, for one thing, one of the--at a minimum we’re trying to help collect the necessary scientific basis to help drive policy, public health policy. We are collaborating with the National Institute of Justice in many of these activities, and a lot of, I understand demonstration projects are geared--I shouldn’t say a lot, but some of them are geared to inmate populations also, looking at education and prevention activities. Granted, there’s a lot of difficulty because it was. things have changed. It was almost COMPUTER AIDED TRANSCRIPTION/keyword index 10 ll 12 13 14 15 16 17 18 19 20 ai 22 23 24 25 Proceedings 32 impossible to mention the use of condoms in inmate population to go beyond just providing information. A lot of these obstacles are being overcome as people understand the true nature of the problem, but it’s still very difficult. You know, it’s common knowledge, under quotation, that there is homosexual activity in prison, that there is drug use, but for a warden or anyone who needs to make decisions to then go a step further and say, well, give free needles or condoms and admit to that, it poses a very serious problem. You know, this goes even outside. COMMISSIONER AHRENS: But it seems to me there are a number of issues here that go beyond what one would consider controversial, like the condom issues. This goes to an issue of standards of care for people with AIDS in the prison system and those kinds. of issues that public health care needs to be working with the criminal justice system to see those standards are in place and I guess that’s my question. DR. CASTRO: Absolutely, very important. CDC does not get directly involved in the provision of care. Other agencies within the public health COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 33 system have that as their primary responsibility, so I know you heard this line before, it’s almost, I find it difficult to say, but that is a reality. Our mission is not the provision of direct care in this or any other setting. DR. KONIGSBERG: Could I have one more last word? DR. OSBORNE: Dr. Konigsberg. DR. KONIGSBERG: Yes, I heard that line before from CDC. I also know that CDC is putting a little money into a care coordination project in my state, maybe I shouldn’t say that publicly. The point of what I want to say, I don’t have a question, but a comment and a recommendation to CDC, continuing one that I make. I think the line between the classic prevention activities and treatment and care gets blurrier and blurrier, especially with AIDS, but I think that’s true with everything else. I want to re-emphasize Dr. Roger's point earlier. We heard some really excellent testimony yesterday that convinced me as a public health physician that frankly I’ve been missing the boat in terms of how we relate to the prison and jail system, COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 34 and I think there's some very important public health aspects to it, and I think it would be very simple to change the surveillance activities, whether we’re reporting AIDS cases or reporting HIV positives in states where that’s required to be reported in order to get at that information. Although that’s not a substitute, I think there’s something to be said for the surveiilance, but again, the major point I’d like to leave you with is that those lines between prevention anc treatment are just not clear to me any more. | DR. CASTRO: I agree with you wholeheartedly, and I think if you were to look at initiatives submitted for upcoming fiscal years, they do reflect that sense for many of us within CDC and the rest of the Public Health Service. i think that the provision of care, that encounter provides an opportunity for prevention activities, and many of us do recognize that that line is getting blurrier. I personally see it as an opportunity to do better prevention. DS. KONISBERG: Thank you. DR. OSBORNE: Well, thank you both for launching today’s discussion with some very important COMPUTER AIDED TRANSCRIPTION/keyword index 10 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 35 testimony. We appreciate your being here. I apologize to others that we’re running late, but I think this was a rich and important start. Let’s go now to Dr. Robert Cohen, and again, Dr. Cohen, you probably heard me say that if you could be about ten minutes in your comments, then we'll have a chance to interact, which I mentioned before. Thank you for being with us. DR. COHEN: Thank you for giving me the Opportunity to address the Commission. I have been involved with medical care of prisoners since ‘75 as a doctor, researcher, medical administrator, medical expert and civil rights, legislation and as court appointed monitor for medical services in prisons. I served for five years as the medical director of the Montefiore Rikers Island Health services that you've heard about yesterday and I reviewed medical services in fifteen states, the District of Columbia and the Commonweal=nA ox Puerto Rico, where as of a few months ago no prisoners were receiving AZT. | - was appointed by Federal District Judge Susan Black to monitor medical services for prisoners in Florida, end was recently appointed by Federal District Jucge Robert Ward to monitor the the medical COMPUTER AIDED TRANSCRIPTION/keyword index wm me Ww WN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 36 care in New York City’s Greenhaven Correctional Facility. In 1986 through 1988, I was the vice president for medical operations in the New York City Health and Hospitals Corporation and responsible for medical services for prisoners at Bellevue, Kings County and Eimhurst Hospitals. I was also responsible for AIDS services in the New York Hospital system. =m 1988 I left the Health and Hospitals systems stethescope in hand, to begin to practice medicine again, and I’ve continued in clinical practice, but in 1989 became the medical director for the AIDS center at St. Vincent’s Hospital in Manhattan. in the past two years I’ve testified in Federal Court involving the medical care of persons with AIDS in Alabama, Connecticut and reviewed the care of women with AIDS at Bedford Hills Correctional Facility in Sew York. I present to you my bona fides in this excruciating cetail so you’ll take seriously my observations and suggestions regarding the medical care of persons with AIDS. You are all experts in this terrible COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 37 disease. You will hear today about the attempts of Some correctional systems to provide medical services for prisoners with HIV disease and you will hear about the failures of other systems. What I would like you to hear, to reflect on and incorporate in your reports and recommendations is the fact that nationally that a dangerously inadequate prison health care system is being overwhelmed by two epidemics; one, the mass incarceration of poor black and Hispanic drug users and, two, the extraordinary medical demands of the AIDS epidemic. = said before that there are no Opportunities provided by the presence of so many men and women with HIV infection in our prisons. I do not mean that prisons do not have a responsibility to educate prisoners about AIDS, to provide them with comprehensive diagnostic and treatment services, allow them eccess in certain circumstances to clinical triais, and always to protect the confidentiality of the medical encounter. But although it might be convenient to have many HIV infected men together, prisons are not health facilities. They are violent, dangerous institutions COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 38 where death comes too early for the HIV infected. Our prisons are terrible places. Although the’ Supreme Court has repeatedly ruled that states cannot be deliberately indifferent to the medical needs of prisoners, in essence establishing a right to medical care, most states are deliberately indifferent to the medical needs of prisoners. Even in jurisdictions where successful lawsuits have brought court ordered improvements in medical service, the rapid growth of the prison population overwhelms the limited medical resources available. You'll hear today about Alabama and the Limestone prison, where all men infected with HIV virus are herded into a prison within a prison, forbidden contact with non-HIV infected prisoners and are systematically denied access to medical care. I visited Limestone on two occasions. It was a chilling experience to see more than 100 men separated from the rest of the prison, forbidden to talk to other prisoners and to hear the correctional authorities and two successive private medical providers at the facility justify the establishment of this quarentine on medical grounds. The mandatory testing and counseling COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 39 procedures when I was there in 1988, and I will use rough language right now, involved a testing without any informed consent of all prisoners entering the system. There was no notification of prisoners that they were being tested and the notification process involved the person in the general population intake dorm being pulled out of the intake dorm and brought to punitive confinement and the prisoner said, "Why am I being brought to seqregation?" And they said, "Because you have the fucking AIDS, * and that was by a correctional officer, that was the notification process in Alabama, a state by the way, under federal jurisdiction in this prison system for ten years. The medical care available to these prisoners was apalling. Those who were sick were allowed to rot until they were beyond treatment and those who would benefit from AZT or a prophylaxis were systematically denied treatment. A federal judge ruled that this segregation was medically appropriate, and that the horrible mistreatment was Constitutional. New York State law recently passed on AIDS in prisons forbids this kind of segregation, but the COMPUTER AIDED TRANSCRIPTION/keyword index il 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 40 New York City Department of Corrections maintains a policy of segregation of prisoners with AIDS. I would hope that the Commission would condemn segregation, mandatory segregation of prisoners with HIV infection. In Bedford in 1988, I reviewed the care of women prisoners with AIDS and repeatedly saw women who were quite sick who were denied access to medical care, or who, for example, had sudden episodes of hypertension and acute serious neurological defects and were kept in their cells, asked to walk back to the infirmaries, not brought to hospitals until days later when their toxoplasmosis was diagnosed. In Connecticut, I reviewed the medical records of many prisoners with AIDS who were systematically denied access to medical care. I have talked to the person working with the Department of Corrections who had responsibility for treating HIV disease in the prison who told me that tetracycline was the treatment for pneumocystis pneumonia. As you will hear, some progress was made in Connecticut through the litigation process to guarantee health education counseling, and medical services to prisoners, but this example demonstrates COMPUTER AIDED TRANSCRIPTION/keyword index 10 li 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 41 a critical point. AIDS is a complicated disease requiring sophisticated clinicians and prompt access to complicated and and expensive diagnostic and therapeutic services. The health care for prisoners is generally so poor that there are serious problems with access to the most routine or emergency medical services. Followup for serious medical problems is frequently delayed or ignored and access to outside specialists takes from months to forever. It is not possible to graft minimally adequate AIDS services on to a prison health system which cannot provide basic services. I'll say that point two or three more times, I think it’s critical. A corollary is that efforts to provide medical care for HIV infected prisoners must include the establishment of medical care systems which can provide basic care for all prisoners. I hope the Commission will recognize this critical point. Adding AIDS services to a Community Hospital which has comprehensive diagnostic and treatment capabilities is a very difficult task. Adding AIDS services to non-functional prison health programs will not work. COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 42 People with AIDS should not have to die in prison. The Commission can make an important contributien by urging all jurisdictions to furlough or parole terminally ill prisoners. Such programs cannot be AIDS specific, but should allow prisoners in the final stages of this disease to die outside of prison. '-] rnere’s no question that prisoners with HIV disease need access to confidential medical services, access to qualified clinicians, access to approved and experimental medications, access to specialists, specialized diagnostic tests, to prompt hospitalization when required and must not be quarantined within prisons. I have no doubt the Commission will strongly endorse this program, as well as expressing Support for some program of release of terminally ill prisoners with AIDS and the establishment of links to community AIDS services on discharge from prison. incarceration rates in the United States have risen dramatically in the past fifteen years, and I provide some data similar to what Mark did. It’s 12,500 in 1973, 54,000 people today. In 1980, the New York City jail population was 7000, and is COMPUTER AIDED TRANSCRIPTION/keyword index WwW NO = 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 43 more than twenty thousand today. “¥e place millions of citizens, particularly young black and Hispanic men in prison and condemn them to a vicious cycle of reincarceration by an unforgiving society without economic oppotunity. Year after year we become more repressive, more hysterical in our new puritanism, as we seek to blame every social problem in our country on drugs, and use imprisonment as the only solution. As we imprison more and more intravenous drug users, we will imprison more and more HIV infected people. I don’t think you need a lot of slides to understand that. I appreciate the work Ken is doing and I can’t wait to see the Illinois data, but if you arrest everysody who uses drugs, then you’re going to have more HIV infected people in prison. I strongly urge you to recognize the Stupidity of our current policy of incarcerating more and more HIV infected individuals by choosing mass imprisonment as our response to the use of drugs. Tnere are two preferable alternatives to the current epidemic of mass incarceration: Drug treatment sheuld be available to all who want it and COMPUTER AIDED TRANSCRIPTION/keyword index 12 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 44 there shoula be legalization of drugs. Drug treatment is cheaper and more effective than incarceration in changing behavior and modifying the course of the AIDS epidemic, which is the task of your Commission. Drug treatment at the present time is unfortunately not as effective as we need it to be. It’s like AIDS treatment in that respect, but has greater potential than imprisonment which wrenches individuals from their communities and creates a huge class of unemployable men who are more likely to use drugs. Legalization must be--I say "men," because we’‘re talking about 95 percent men in this population. Clearly, there are many women and as you have heard or will hear, the percentage of women who are infected that are incarcerated is greater than men. Legalization must be seriously considered in any strategy for coping with drug use. If heroin had been legal and users had access to sterile needles ana syringes, the epidemic probably would not - have spread rapidly within this population. Is our country ready for legalization? I actually think so. Prohibition continues to fail COMPUTER AIDED TRANSCRIPTION/keyword index ~J 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 45 miserably and tragically and at unbearable cost. Both of these alternatives should be carefully considered by the Commission. Implementation of these alternatives will make a substantial contribution to controlling the AIDS epidemic. Continued mass imprisonment will do nothing to stem the spread of this disease. It is difficult to provide medical care for prisoners. It is essential that medical care be provided for prisoners. Care for prisoners with HIV disease is complex, expensive and requires well trained clinicians. It cannot be grafted on to a non-functional prison health care system, it just won’t work. The components of the system are the same as those for non-prisoners; the extra difficulty involved in providing complex medical services ina non-health care space. This difficulty cannot be minimized. It is magnified beyond solution, by the rapid increase in prison population with an increasing prevalence of HIV infection. The Commission can provide needed leadership by linking the provision of adequate care of prisoners with AIDS to a rethinking of our present COMPUTER AIDED TRANSCRIPTION/keyword index Oo 8 4 DO WT SF & NH BS NH NM NY NM NN Re OR om oe pe peop wn oF WwW NY FEF OC © ODO 1 MH &® BD BD EP Oo Proceedings 46 national policy of mass incarceration. Thank you for this opportunity, best of luck in your deliberations and your leadership is valued by all fighting against this epidemic. Thanks. DR. OSBORNE: Thank you, that’s wonderful testimony, we appreciate it. Questions from the Commissioners? Diane? COMMISSIONER AHRENS: Yes, unless I misunderstood yesterday’s testimony, when we met with some of the health officials at Rikers Island, page 4 in your testimony indicates that the New York City Department of Corrections maintains a policy of segregation of prisoners with AIDS. That was in contrast to what I thought I heard yesterday, and I’m wondering if you would want to expand a little bit on that? DR. COHEN: Yes, I would. I confess to being present at the conception of that policy, which I expressed my apologies and regrets. There is a policy of segregation on Rikers Island of people with CDC defined AIDS. It is true, as Dr. Braslow could tell you, that he knows many patients with CpC _ defined AIDS who are not segregated, but there is a COMPUTER AIDED TRANSCRIPTION/keyword index oO fo Ss OD WT ee & NM oe - Oo 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 47 segregated dormitory for the care of prisoners with AIDS, people who are diagnosed with AIDS are sent there, they cannot be discharged into the general population, and that is the policy right now. HIV infection is treated throughout the prison. COMMISSIONER AHRENS: When they described the medical facility there, which of course we did not see, they did say that because people with AIDS require greater provision of care and nursing service, et cetera, they are in a separate room in I take it the infirmary, but that’s a little different than saying they segregate people with AIDS. DR. COHEN: They do segregate people with AIDS. I care for hundreds of people with this disease. They’re my patients. They work, they may not work, they don’t require infirmary housing. When people are required to be in an infirmary it’s critical that every prison medical care system like Rikers must private infirmary style services for people with AIDS any disease who need them, but there’s not reason for people who don’t need medically intensive services to be segregated within that, and that’s my point. COMMISSIONER DALTON: Dr. Braslow? I COMPUTER AIDED TRANSCRIPTION/keyword index 13 oO 2S 4 OO WwW Se WwW NH NM NM NY NR NY NR Bw me oe pm oO fF WwW NY FPF OF © © WY DH NH BB WD NY FS COC Proceedings 48 wonder if Dr. Braslow could come to the microphone for just a second? DR. BRASLOW: I'd be glad to clarify that, if I may. DR. ROGERS: You can even sit next to your colleague if you want. DR. BRASLOW: There is no segregation for people with HIV infection. There is a dormitory: within an infirmary on Rikers Island which the policy is that it is used to house people with CDC defined AIDS. I feel that that’s medically totally inappropriate, and we have tried to not follow this policy by not admitting all people with CDC defined AIDS to this infirmary, if their medical condition warranted that situation. We also have admitted some people who had not reached the stage of CDC defined AIDS, but who did require the medical level of care that could be provided there. We have admitted people there. As Dr. Cohen said, there’s extreme difficulty discharging people from this dormitory, because it is widely known’as the AIDS dormitory, and therefore, there is a perception that if people are discharged from there, that they will be victimized. COMPUTER AIDED TRANSCRIPTION/keyword index —>=_ Ww Wh un 10 li 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 49 COMMISSIONER DALTON: Let me just follow up for a second. Hi. I take it then when you Say that that’s a dormitory in which the policy is to place people who have CDC defined AIDS, you’re talking about people who even during those periods in which they are not experiencing symptoms that require them to be in an infirmary, correct? DR. BRASLOW: That’s correct. COMMISSIONER DALTON: And your latter point about there's a perception that if they’re released from the, quote, aids dorm to the general population, there may be some difficulty, that seems somewhat inconsistent with some of the testimony we've heard yesterday that education that’s proceeded so far in the jail system that in fact inmates who were known to have AIDS were not at risk. DR. BRASLOW: It’s my belief that people who are in Dorm 4, which is what the dormitory is known as, could be discharged from there, and I feel it would be worth doing and am not concerned about the possibility of recriminations against them. The Department of Corrections feels to the contrary, and therefore that is the philosophy, that COMPUTER AIDED TRANSCRIPTION/keyword index mH Wh & WW WN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 50 is the official policy. COMMISSIONER DALTON: Thank you. I do have a question for Dr. Cohen. You talked about the need for a policy nationwide of compassionate release for inmates who are terminally ill. I recently had the experience of trying to get an inmate released from the federal system who had full blown AIDS. He came into the authority of the parole board because of the point at which he had been incarcerated and several times he was told, "When you have five to ten days to live, get back in touch with us." Which raises of question of what do you mean by terminally ill, how do you define that? D0es anyone who is HIV infected or has full blown AIDS qualify? Sc could you put a little flesh on that? DR. COHEN: I'll try to. It’s not an easy problem, it’s something the prison system has been coping with well before this epidemic. When I was in Illinois, I think that's when Governor Kerner was released from prison, he was suffering from cancer. The criteria would be medical, think would involve some guess, which of COMPUTER AIDED TRANSCRIPTION/keyword index no iW & WW ih 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 51 course is all one could do about life expectancy, and would be on the short end rather than the long end, but’ I think we would be talking months rather than days. | It would certainly have to have a review, some judicial review relative to the charges, because the social~-because the popular response to release of people would be a function of the crimes. It would reflect their degree of capacity at the time, and people who were dependent, incontinent and with severe neuropathy and can’t walk don’t serve any function by being in prison, and they can be discharged. New York City in an easier mode has a system of removing people, it’s called and ROR, release on recognizance, maybe you heard about it yesterday, a program where those kinds of criteria are used for people who are awaiting trial, and they are taken out of the system. There are tremendous financial aspects to this issue, because if you can get someone out of prison, they then become, their medical care is then paid for by the Medicaid or other systems, and the cost of incarceration and guarding is reduced. COMPUTER AIDED TRANSCRIPTION/keyword index Oo OO ~~ HD WwW & WH NH = = ee ee Pm WwW NH SF OC 15 16 17 18 19 20 21 22 23 24 25 Proceedings 52 I hope that’s responsive to your question. I mean, I could help anybody who wanted to write such @ policy and I have in the past. Those are the elements of it. COMMISSIONER KESSLER: Dr. Cohen, I want to applaud you for your passion and also your courage. I think as you were two-thirds of the way through your talk, I was sitting here thinking, somebody’s going to have to raise this issue of legalization and I was about to ask you that when you dropped it, and I’m glad you did. It’s difficult I think for us today to get into this full blown, but I regret that Mr. Cohen isn’t here, because I’d like to ask him now, too. Not Cohen, but Lopez. DR. OSBORNE: He’s here. VOICE: He’s hiding. COMMISSIONER KESSLER: Okay. It’s probably the most controversial thing that-- certainly takes the heat off condoms, but would you like to spend a few minutes kind of visualizing for us publicly what your concepts would be or what you think might be the ingredients in a legalization _ program? COMPUTER AIDED TRANSCRIPTION/keyword index 14 no WwW & Ww N 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 53 DR. COHEN: I could try. There are probably others within your own group who may be better at that. The basis for the legalization program would be a recognition of the failure of prohibition. I think that’s the critical step, and that’s been--that has been true for as long as I can remember and have reviewed the issues. I think that the models that have been in use in the Netherlands and in England have been reasonably successful, that would be posing a medicalization model of availability of drugs. I can’t actually imagine something which is not State regulated, and think that such things should be State regulated. The profits in the system should be limited and they should go towards medical and educational and other social needs of this country, so I would propose a federally regulated system of distribution with possibly some medical components for people who are addicted and are seeking maintenance. — DR. OSBORNE: While you’re commenting, would you weave crack into your comments, because I COMPUTER AIDED TRANSCRIPTION/keyword index no WwW & WwW NN f= 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 54 get stopped periodically about that stage by people who point out that does raise different issues from injectable drugs. DR. COHEN: I think crack may raise some different issues from injectable drugs. I believe that the data on crack is not in, I believe that everybody in this room over the past three or four years has been subjected to an unbelievable barrage of information from the Partnership for a Drug Free America, et al, on drugs, which I am a little tired right now, because I spent much of the night with my six week old baby daughter, and I was reading the back of the Times the other day, which gave me a story to read for her when she’s bigger, about the meanies in her schoolyard who are going to give her marijuana. I’m not sure what the real data on crack is. There’s no question that there are people, many people who use crack who lose control on it. I don’t know if those numbers are anywhere near the number of people who use alcohol and lose control on it. And I don’t know if the availability of the drug and the cost--if the availability of the drug were controlled _ like alcohol whether or not we would have anywhere COMPUTER AIDED TRANSCRIPTION/keyword index Oo CO NHN HD Wl 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 55 near the problems that we have with alcohol, and I Say this being anti~ prohibitionist, because of the failures and the social cost of prohibition and the creation of extraordinary crime by people fighting for the profits of the drug industry. So that’s all I can say. I really do not think there's a huge amount of data on crack and I doubt it would be anywhere near as large as the problem we have with legalized alcohol. DR. DeSJARLAIS: Obviously, the legalization of drugs goes beyond just what this Commission is chartered to consider, but I think I would have to strongly agree with you that if anything is going to lead to the decriminalization of drugs in this country, it will be the failure of our incarceration system to control drug related crime. The specifics of a decriminalization system, whether it would be State controlled, whether you would allow for-profit companies, whether you would have~--what drugs you would do with various levels of decriminalization, I mean, clearly, the Dutch system does not legalize drugs, and they make that very, very emphatic when you visit there, that it’s not a legalization system and that they treat COMPUTER AIDED TRANSCRIPTION/keyword index Ww NM 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 56 marijuana very differently from heroin and cocaine. All that becomes very complicated and probably the biggest difficulty that the advocates of legalization or decriminalization face is the complexities and difficulties of working out what you would do for various drugs that no one seems to be able to work through what would appear to be a viable system for decriminalization. DR- OSBORNE: Harlon has the last word on that. COMMISSIONER DALTON: This obviously isn’t a chance to have a full blown discussion on this topic. I did want to jyst say, thank you also for raising it, and point out just how recent the criminalization of drug use is in this country, and it’s a question of criminalization versus decriminalization, rather than legalization. There’s nothing God given about the way of treating drug use in the way that we do. DR. OSBORNE: Well, you have raised an important issue, and I very much appreciate the power with which you testified about it. We will not walk away from it completely in future discussions, I’m - sure. COMPUTER AIDED TRANSCRIPTION/keyword index 15 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 57 Thank you very much, and I think we should proceed to Dr. Moritsugu, Assistant Surgeon General, Medical Director, Federal Bureau of Prisons. Thank you for your patience. DR. MORITSUGU: Good morning, and in the interests of some physiologic needs, I know you have all been sitting for a long time without a break and I am willing, if you would like to postpone my testimony until after a break. It is at your pleasure. I am here for the afternoon. DR. OSBORNE: Thank you, that sounds like a good idea. Some of my Commissioners in particular say its sounds like a good idea, so we’ll take a brief break. (Brief recess.) DR. OSBORNE: I think we better go ahead and get started, in the interests of time. I gather that the line to the telephone is a little bit longer than we expected, but thank you for being patient with us, and we will proceed with Dr. Moritsugu, who. has kindly agreed to kind of cross reference the written testimony, which we will have a chance to look at at our leisure, and to take most of COMPUTER AIDED TRANSCRIPTION/keyword index nO wm &» Ww HN - ~J 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 58 the time to interact with us. Before I forget to do so, Dr. Castro has mentioned to me that he has put a set of the CDC policies with respect to tuberculosis and correctional facilities somewhere along the table there, for those of you who are interested in that additional briefing material, which was not necessarily included with what you got. Thank you, doctor. DR. MORITSUGU: Thank you very much, Dr. Osborne and Commissioners. I first would like to bring you greetings from J. Michael Quinlan, who is the director of the Federal Bureau of Prisons who was unable to be here. He was specifically invited to presented to you, he has a very intense personal interest in this issue and has testified previously before the Commission on this very issue. As I have been introduced, I will also add for the record a copy of my bona fides, so I will not need to go through that in extensive detail, short of saying that as a career officer in the U.S. Public Health Service, I am currently the Medical Director for the Department of Justice Federal Bureau of COMPUTER AIDED TRANSCRIPTION/keyword index Nm nan UO & 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 59 Prisons, a system of prisons encompassing 65 institutions and 57,000 inmates at this point, and growing. It is a federal system and it addresses those individuals who are incarcerated principally for federal crimes. I appreciate the opportunity to provide the Commission an overview of our policies on HIV infection and AIDS at your hearings, and I will summarize my prepared comments which I believe you have for the record. The basis of the policies with regard to HIV infection within the Federal Bureau of Prisons has to do with a balanced approach between the rights of individuals who are HIV positive and the rights of uninfected individuals within the context of very complex medical, legal and ethical issues. We believe that a balanced approach is possible, it is consistent with all contemporary advisories of the Centers for Disease Control and in fact was used as a model for the correctional settings in the June 1988 report of the President’s Commission on the HIV epidemic. The basis on which we establish our entire _ policy is education and not segregation. COMPUTER AIDED TRANSCRIPTION/keyword index eo wo -~l 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 60 Our HIV program is a systematic approach, which targets four important areas; education, testing, counseling and treatment. We place a great deal of emphasis on prevention as exemplified in some of our initiatives. With regard to our education programs, we have programs that are addressed both towards staff as well as towards inmates. We utilize numerous media including lectures, discussion groups, written materials and videotapes, some of which are uniquely prepared for us, and others we have been able to obtain licenses from, for example, public broadcasting’s systems, in other words, to make copies of the AIDS Quarterly, which we distribute every three months to every single one of our institutions for showing not only to staff, but also to inmates. The principle, again, that we utilize is one of universal precautions and we educate very intensively along the lines of universal precautions. As far as testing is concerned, we have several categories for testing inmates. First, a sample of newly committed inmates which we follow on a regular basis to monitor the epidemiological _ prevalence within the prison system. COMPUTER AIDED TRANSCRIPTION/keyword index 16 Ww MN = oO oOo IF DW w 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 61 Two, all inmates prior to release. Three, all inmates who ask to be tested. Four, all inmates who display clinical Signs of HIV infection. | And fifth, any inmate who displays what we consider as predatory and promiscuous behavior. Regarding our sample of newly committed inmates, this entails testing a certain proportion of all newly committed inmates every year, whom we then follow every six months if the individual tests seronegative. Again, this is to measure our intake rates as well as to ascertain whether or not there is in fact any transmission within our system. We have found a very small number of individuals who have seroconverted while within our care. That is, approximately 14 individuals who initially tested negative who on subsequent testing tested positive. However, nearly every single one of those individuals who seroconverted, sero- converted by the first six month retest. There is a very Significant epidemiological implication there, that it is very possible and probable that the initial test occurred during the latency period. We require all inmates to be tested prior COMPUTER AIDED TRANSCRIPTION/keyword index nD iW ©.» Ww AN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 62 to being released. The information is considered strictly confidential, and is released on a need to know basis. Identification of blood samples are by number, rather than by name. The individuals who normally are considered need to know are the warden at the institution, the clinical staff, psychology services staff and the inmate’s unit manager. At the time that the inmate is nearing release, we notify the U.S. Probation Office, and where this is post release supervision, we do notify the community programs manager in the case of the halfway house placement. Lest you think that all we do is test, we also provide pre and post test counseling, and that is every individual who is tested, whether by volunteer or by random sample, the individual is counseled prior to the test being administered, and subsequent to the test being administered, when the results of the test are reported to the individual inmate. As part of our perspective that we have a responsibility not only within the institution, but as well to the community at large, when we do have an HIV positive test reported, we also report that COMPUTER AIDED TRANSCRIPTION/keyword index 4 w NO 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 63 information to the respective board of health in the state in which our institution is located, consistent with state and local laws. We encourage HIV positive inmates to notify individuals who may have been placed at risk as a result of the inmate’s activities. As far as treatment is concerned, we provide or attempt to provide state of the art medical care consistent with community standards. We provide AZT and aerosolized Pentamidine to those inmates for whom there is a clinical indication. Furthermore, we do not segregate HIV positive inmates. Those inmates remain in the general population. All institutions can provide non-acute care through resources which exist within the existing facility, or through contract services outside that facility. For those individuals requiring hospitalization, we refer those individuals to inpatient care at one of our medical referral centers; for males, at our Medical Center for Federal Prisons in Springfield, Missouri, as well as our Federal Medical Center in Rochester, Minnesota, which _ parenthetically is affiliated with the Mayo Clinic, COMPUTER AIDED TRANSCRIPTION/keyword index Qo ss NT UN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 64 and for females at our hospital in Lexington, Kentucky. ~ We do provide prophylactic AZT consistent with CDC recommendations, and we have an intensive program which encourages inmates to self identify and to volunteer for testing if they have not been previously identified and if they believe that they have engaged in high risk behavior that could cause them to be HIV positive. Part of our system of health care includes a hospice program, which is located at our Medical: Center for Federal Prisoners in Springfield and a smaller hospice program.in Lexington, Kentucky. ‘The program uses community hospice leaders, staff Chaplain and staff psychologist who trains inmate volunteers to serve as hospice counselors. Individuals who are within the federal prison system do have an opportunity to request early release. One of your Commissioners has already commented on that, and I am not familiar with that request personally. However, I do need to comment that those requests for early release have been extremely rare. In the two and a half years of my _ tenure as medical director, I believe that I have COMPUTER AIDED TRANSCRIPTION/keyword index 17 nm & tw NN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 65 actually seen perhaps three requests that have actually come to me, because I am ultimately responsible for making the recommendation from the Federal Bureau of Prisons, and in each of those instances, because the criteria met what we felt were appropriate, we did in fact recommend to the parole commission or to the courts an early release. I should comment that we in the Federal Bureau of Prisons do not have unilaterally the authority to release an individual who is serving a sentence. That authority is retained by the courts or by the U.S. parole commission, and subsequent to the phasing out of the J.S. Parole Commission, it will go back to the courts. I have mentioned earlier that we do mainstream all of our HIV positive individuals. We do not segregate. Our emphasis on education, universal precaution, and what we believe is professional management of HIV positive inmates has rendered in our opinion isolation unnecessary. We do and we have the authority to place inmates who are displaying predatory or promiscuous behavior in administrative detention. Those situations are _ extremely rare. Within the last three years, I COMPUTER AIDED TRANSCRIPTION/keyword index > Ww A no ww 10 li 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 66 believe that we have less than two dozen individuals who have in fact qualified for administrative detention along these lines. They do not remain in administrative retention forever. They are reviewed on a regular basis, and in fact at this point we have approximately eight individuals who are so segregated. We do not allow inmates to participate in medical experimentation. However, we do allow access to extended access programs. That, however, is an extremely limited situation, it requires my personal review and personal approval, and that is to protect the inmates from unwarranted, unnecessary medical experimentation, and this is across the board, it is not only within the case of HIV positive inmates. In summary, the total approach we have taken in developing our HIV policy within the Federal Bureau of Prisons, which we believe is an integrated policy, is consistent with our overall mission in health services, and that is to provide up to date compassionate care that is consistent with community standards, care that is both available as well as accessible to the inmates, which balances the COMPUTER AIDED TRANSCRIPTION/keyword index eo Oo NN DT We ww! Oe ee - Oo 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 67 responsibility between we as the custodians and care providers, and the inmates who are also our patients and our clients, based upon a very strong program of education and not segregation. | I have quickly gone through my prepared testimony, hopefully summarizing for the Commissioners what is written before you. I thank the Commission for this opportunity to explain our program regarding this very, very severe problem, and I am here to respond to any questions or comments that you might have. DR. OSBORNE: Thanks very much. Harlon Dalton. COMMISSIONER DALTON: Dr. Moritsugu, I have questions in three areas. One has to do, this will be no surprise, with your compassional release program. Second has to do with what you characterize as state of the art treatment for inmates who are HIV positive and the third has to do with testing. The case I mentioned was a case involving the parole board. You indicated, though, that you were the final decision maker with respect to compassionate release requests. Does that mean that inmates who still come under the parole system, that COMPUTER AIDED TRANSCRIPTION/keyword index Oo Oo NH OO YW SF WY NN _ Qo ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 68 the parole board then asks your opinion about whether there should be compassionate release or do they make the’ decision on their own? DR. MORITSUGU: Let me be very careful, because as you were making your statement there was a statement there which may not be correctly interpreted. I am not the final determinant for the Commission. I am the final determinant in making a recommendation from the Federal Bureau of Prisons to the director of the Federal Bureau of Prisons as a surrogate to the U.S. Parole Commission. In other words, we are in an advisory or recommending role, the U.S. Parole Commission actually has the authority to act. Now, the question that you are specifically asking, does the U.S. Parole Commission turn to us for our recommendation, and the answer is yes, they do consider our recommendation very, very strongly. The recommendation, the review that we make is based upon an initiation of such a request for early release by the inmate, reviewed by institutional staff with a recommendation that _ ultimately comes to my desk for a review, which then COMPUTER AIDED TRANSCRIPTION/keyword index 18 no WwW > Ww Dd 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 69 goes to the Parole Commission. COMMISSIONER DALTON: If I were to send you documentation of an inmate at Danbury prison whose prison doctor recommended that he be released early because of his terminal AIDS, and if I sent you documentation from the Parole Commission twice saying, "Come to us when he has five to ten days left," would you use that as the basis for some further education of the Parole Commission around HIV? DR. MORITSUGU: I would be happy to review the case that you're describing. I’m not personally familiar with it, since,we haven’t used any names in this discussion, nor do I think it’s appropriate for us to do so. COMMISSIONER DALTON: Your education function, does that include educating the Parole Commission? DR. MORITSUGU: It is not within our specific authority to educate the Parole Commission, but I would say that our interaction not only with the Parole Commission, but also with the courts and other correctional institutions, that we do have an _ ancillary educational role. COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 70 COMMISSIONER DALTON: Now, the same inmate had been on AZT in the prison and that worked perfectly well, except for the minor fact he couldn’t have a timer because that would let the inmates and guards know he had AIDS, but let’s leave that aside. After a few years on AZT that drug became ineffective for him and he wanted to try DDI, and he was told that he could not be put on DDI within the Bureau of Prison system because DDI is, quote, experimental, or in any event non-FDA approved. The impression I got from your written testimony is that the Bureau of Prisons will allow extended access to non-FDA approved drugs if in fact approved drugs proved ineffective, et cetera, et cetera. Was this just a glitch in the system in this person’s experience? DR. MORITSUGU: No, it’s not a glitch in the system and I presume that the case occurred several months ago. As you are aware, what we are dealing with is a very fast moving target and policies in science are evolving at a very, very rapid rate. At the time that that policy may have been applied-- COMMISSIONER DALTON: In May of this year. COMPUTER AIDED TRANSCRIPTION/keyword index ao WwW & Ww NO 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 71 DR. MORITSUGU: In May of this year, we did not and we have not yet sent out clear guidance regarding the utilization of DDI, because we are reissuing the entire policy come September-October of this year. It’s prepared to be released in the next month and a half. Prior to that time, it was an articulated policy of the Bureau not to allow such extended access, because at that time we did not feel that DDI was appropriate and safe for use. Recently, we have gotten new information, evolving information, and we are re-examining that, and I expect that we will allow extend access. COMMISSIONER DALTON: And the third set of questions has to do with testing. Those incoming inmates that you test for a two-month period, is that with or without informed consent? Is that mandatory testing of the entire cohort that comes through? DR. MORITSUGU: Every individual who is tested knows that he or she is being tested. I Suppose that one can play semantics and say is it mandatory testing, yes, it is expected that if you , are in the cohort you will be tested. However, it is COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 72 a random testing as opposed to everyone being tested, but in fact, we expect those individuals who are randomly identified to agree to test. COMMISSIONER DALTON: And given the fact that you follow up periodically, I gather this is not a blinded testing, you know who these inmates are and what the status is? DR. MORITSUGU: That’s correct, we are aware of that, as I’ve described to you, with very strict confidential controls on the information. COMMISSIONER DALTON: And you test all inmates prior to release? As I recall when this policy was first announced by then Attorney General Ed Meese, he was asked by a reporter why, and his answer after some hesitation was, well, perhaps these people might be seropositive, and then we would want to maybe not release them or we might want to warn possible future employers. Now, I gather from your written policy that that, at least the official policy of the Bureau of Prisons is to not take into account sero status in making release decisions, but that still leaves a question of why do this? Why do you test inmates _ prior to their release and why do you inform the COMPUTER AIDED TRANSCRIPTION/keyword index 19 = oO un 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 73 Probation Department? DR. MORITSUGU: Well, first you asked a series of questions there, and let me see if I can remember them seriatum. | Number one, the purpose of our testing all individuals prior to release has been our belief that prior to releasing individuals into the community, we do have a certain degree of responsibility to notify state health departments regarding serostatus, also to provide individuals who may have been within our system an opportunity to know what their serostatus is. Now, with regard to the statement that you implied or stated, I’m not familiar with then Attorney General Meese’s comment about not releasing individuals, my testimony is accurate, and that is that the determination of whether to release or not to release an individual is not predicated upon sero Status, because we do not have the legal authority to keep an individual a minute longer than the expiration of a court sentence. However, we do have the authority to determine whether an individual will be released, at _ what point an individual will be released to a COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 74 halfway house. Whether or not an individual exhibits certain positive social behaviors, and I say this in quotes, that piece of information, whether an individual has consented to a prerelease testing, and to notifying a significant other, that can be considered, and I do not say that it is in every instance considered by those individuals making early community release decisions. COMMISSIONER DALTON: Let me, so we can be clear about this, assuming that an inmate, quote, "consents," and I think we can agree that this isn’t really an issue of consent or not consent prior to being released, assuming an inmate is tested and turns out seropositive. Can that be taken into account in deciding whether or not and when to go into community release, release into a halfway house? DR. MORITSUGU: If you’re asking me from the standpoint of the Bureau of Prison’s policy, the answer is no, that will not be taken into | consideration. COMMISSIONER DALTON: But you do inform the halfway houses of the sero status? DR. MORITSUGU: After the decision to _ release. COMPUTER AIDED TRANSCRIPTION/keyword index Ww Nw 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 75 COMMISSIONER DALTON: And in practice, I take it these are private halfway houses for the most part, rather than government facilities? DR. MORITSUGUs: That’s correct. COMMISSIONER DALTON: And do such halfway houses uniformly take such inmates who are seropositive; do they reject inmates who are seropositive? What is the practice? DR. MORITSUGU: I really can’t answer that question for you, because I really am not familiar with it at that point. I do know that we have a spectrum of awareness in the community, just as there is a spectrum of awareness in the professional areas and within the Federal Bureau of Prisons. We have had a couple of instances where there has been resistance in accepting an individual who has been known to be HIV seropositive. Again, we attempt to work with those institutions to educate them, that just because an individual may be seropositive does not create a higher or lower risk of infection. DR. OSBORNE: This obviously is something that we would like to spend more time talking about, and I do have a letter that brings up a case in COMPUTER AIDED TRANSCRIPTION/keyword index & WW bh a wm 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 76 point, which we certainly don’t want to discuss in its particulars because of confidentiality, but I might ask Mr. Dalton to look at it and get a chance to talk with you before we lose your valuable time, so we can pursue the issue a little bit further in an appropriately confidential context. Harlon, take a look at this. Eunice, you had a last question. I’m sorry we're having to be so brief. COMMISSIONER DIAZ: Very brief questions. Thank you, Ken, for being here and taking time from your schedule to give such valuable information. My first question, I would just like to relate some of the facts that you gave about AIDS in federal prisons. Do the statistics in any way parallel the demographics of AIDS in communities, the kind of information or do not? DR. MORITSUGU: Yes, the statistics that we have with regard to HIV positive inmates very much parallel those in communities, but I think that you also would need to take into consideration the type of inmates that we have within federal prisons, and that is that it would be important for the Commission to examine what kind of prisoners are incarcerated COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 77 within federal prisons, for what offenses, versus what kinds of individuals are incarcerated in state prison. For example, murder is not a federal offense in and of itself. However, it is a state offense, so a murderer would normally find his or her way into a state’s system, rather than normally into a federal system. COMMISSIONER DIAZ: Can an individual select to go into a protected situation within a federal prison? Yesterday we heard of some incarcerated Situations where a person who is homosexual can be in some way protected from other prisoners on self selection. Is this a possibility? DR. MORITSUGU: Yes, it is a possibility, should such an individual request. I cannot think of an instance during my tenure where we have had that kind of request. COMMISSIONER DIAZ: Do the federal prisons have any kind of a special program for women in jails that are pregnant in federal prisons? DR. MORITSUGU: Yes, we do, and again, that program is evolving as we have an increasing COMPUTER AIDED TRANSCRIPTION/keyword index 20 nN im & WwW Ww ~J 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 78 number of inmates and an increasing absolute number of females in prison. Up to this point, our policy has’ been that those female inmates who are pregnant are sent to our federal women’s prison in Lexington, Kentucky where we do have a hospital, where we do have close ties with the University of Kentucky in Lexington, where the females would get prenatal care, would be able to deliver as well as the infant would be able to be placed within that community. Because of the increasing number of inmates who are females, obviously the increasing number of pregnancies, we are looking at establishing two or three additional centers throughout the country which may be closer to the inmate’s home of record, as well as looking at situations where in low security inmates, we may consider perhaps a medical furlough for a brief period of time immediately prepartum, and immediately post partum, which provides the mother an opportunity to bond with the infant, if the mother elects to keep the infant. COMMISSIONER DIAZ: You’ve painted such a comprehensive picture of HIV care in the federal system, I just want to know if just in maybe two _ words you can state any limitations that the federal COMPUTER AIDED TRANSCRIPTION/keyword index & Ww BR oo Wm 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 79 system may have regarding HIV care. DR. MORITSUGU: Well, thank you for that opportunity, and I will be very, very quick about that. | Obviously, one of the constraints that we have is an image problem that I think is all pervasive throughout the entire correctional systems, whether they be state, local or federal, and because of the image problem of health care within correctional systems, recruitment of qualified and sufficient numbers of health care providers continues to be an ongoing problem, one which we have got to to address up front, because while we may have all the systems in place, if you don’t have the human resources to deliver those programs, the best laid plans would simply go fallow. We have been successful up to this point in being able to maintain a sufficient number of human resources, but I think that this is going to be an increasing problem not only in the federal system, but also in other correctional systems as well. I think human resources is going to be a major problem across the board. COMMISSIONER DIAZ: Thank you. COMPUTER AIDED TRANSCRIPTION/keyword index an iw & Ww N | 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 80 DR. DesJARLAIS: Clearly, the potential for HIV transmission in prisons, federal as well as state, is a critical problem for the epidemiology of the disease and policy making. At present, according to the data Ken had, the data you talked about, transmission appears to be very, very low. Do you have an explanation for why it appears to be so low? Is it the low level of risk behavior, the difficulty in transmitting the virus, that people are using condoms and clean needles? why does it appear to be so very, very low that even the documented cases that have been found may have been infected before they came in? It's clearly going to have very big policy implications to understand what’s going on. What is your current best understanding? DR. MORITSUGU: I really do not mean to sound flip when I provide you with a short answer, but we would hope that this indicates that our intensive education program and the application of universal precautions across the board is working. I think for any of us, as some of the previous witnesses have stated, to believe that high risk behavior does not go on within any correctional COMPUTER AIDED TRANSCRIPTION/keyword index oO > Ww N 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 81 setting is playing ostrich, that we put our heads in the sand, and I think it’s a given that in any group of individuals, some level of high risk behavior may very well be occurring. " We in the federal prison systems do not provide condoms. We do not provide needle exchanges, and that has been a policy that has been very, very carefully thought through based upon what our balancing options are. On one hand, in the ideal situation, if one were to be all public health oriented, one would say let us do everything we can do along these lines. On the other hand, the balance is that we have a legal fiduciary and to do such a thing would be contrary to that fiduciary. We believe that by having an intensive education program we have been able to balance off the public health imperatives as well as the legal imperatives. I would hope that our education program is the cause for not seeing a higher level of transmission within the federal prison system, and that is basically what I can explain and the only way that I can really explain it to you. Otherwise, we would be seeing a higher COMPUTER AIDED TRANSCRIPTION/keyword index = Ww NN a wm 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 82 rate of seroconversion because we have been following those cohorts for upwards of three years now, and we have not really observed that high level of seroconversion. DR. OSBORNE: I think we need to go on. Harlon, you had a technical point. COMMISSIONER DALTON: Less of a technical point. Dr. Moritsugu, you said that--I'd like to continue this conversation, and if I were to direct some questions to you, would you be good enough to answer them for the record, and if I were to call you for a more informal conversation, you would answer my telephone call? . DR. MORITSUGU: I most certainly would. We are very, very much--we are very proud of what we believe we have in place and I certainly am not ashamed to discuss or to answer any questions that you might have. COMMISSIONER DALTON: Would you please, Karen Porter is sitting behind you, and would you make sure she knows how to reach you? DR. MORITSUGU: She knows how to reach me. DR. OSBORNE: Thank you very much for your testimony. COMPUTER AIDED TRANSCRIPTION/keyword index => Ww NN Oo oOo ws HH WW 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 83 We'll next have a panel discussing issues in correctional state experiences; Alexa Freeman from Alabama; German Maisonet from California, Catherine Hanssens from New Jersey and Michael Wiseman from New York. If all of you could join us, we'll appreciate it. Let me ask you to introduce yourselves as you speak, since I think I also mispronounced some names. If you could keep your comments just as brief as you can relating to written testimony, which will be easy to see and study, that gives us the maximum opportunity to interact with you, so we’ll have a little timer that will remind you when you have about one minute left. Thank you very much and proceed. MS. FREEMAN: Dr. Osborne, my name is Alexa Freeman, I am lead counsel in Alabama, but I am happily not from that state, given my experience down there. DR. OSBORNE: Thank you for that point of clarification. MS. FREEMAN: I also want to say . parenthetically, not on the point of AIDS, that I COMPUTER AIDED TRANSCRIPTION/keyword index nr Wm 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 84 work with the National Prison Project, and I don’t think that the picture that Dr. Moritsugu has painted about the Federal Bureau of Prisons is as rosy as he would have you believe, and I would refer the Commission to a series of articles that were written by the Dallas Morning Star last year that I think are very critical. DR. OSBORNE: We actually have those in our briefing packet for this meeting. MS. FREEMAN: My testimony today, however, will focus on the AIDS policies and practices of the Alabama Department of Corrections and the ongoing litigation that are challenging those policies in the case of Harris v. Thigpen. I first became involved in Alabama when I received a phone call from the Alabama Prison Project . in 1987 asking for advice on what to look for during a tour that they were making of the state’s two HIV units for prisoners and after I described for them what I thought ideal corrections response should be and what they were looking for, I asked them to get back to me with their findings. | They called me about a month later with a very chilling report. As a result, I then went down COMPUTER AIDED TRANSCRIPTION/keyword index J nm We 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 85 to Alabama to investigate for myself. Let me describe for you what we found. Prisoners were being tested for HIV antibodies without any idea this was being done to them. No pre or post test counseling was provided. A prisoner testing positive typically learned of this fact from a masked and gloved correctional officer coming to escort the prisoner from school or work to an isolation cell. As Dr. Cohen recounted, several prisoners told us how officers had told them they had "the fucking AIDS." Others were told absolutely nothing. They stayed in isolation for days, weeks and sometimes for months awaiting transfer to the two special HIV units in the system. During this time, they received little or no counseling about their test results. Most of the information they received came from correctional officers or each other and it was frequently wrong. Some were told they only had days to live. They suffered immense anguish, thinking that death was imminent, yet they were denied visits with the chaplain or with mental health staff. Their ignorance and fears were compounded by the COMPUTER AIDED TRANSCRIPTION/keyword index > Ww KR un 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 86 Department's practices of requiring them to wear masks and gloves and in some instances rubber clothing or even Saran Wrap around their bodies and rubber footwear. They had to eat on disposable plates and use plastic utensils. Some of them were required to scrub the telephones with alcohol after each use. Their clothing and laundry bags were Stamped with the word "HIV." Even their trash bags, which were bright red, singled them out. One prisoner was required to scrub the shower stall and toilet seats with pure bleach every time he used them, and then to mop the floor with this bleach behind him as he walked back to his cell. They were let out of their isolation cells only for an occasional shower and phone call. They had no visits, no chapel, no recreation and no program. Their only human contact was shouting with each other through the walls. After they were transferred to the permanent HIV units, they fared little better. Women were housed in a special unit at the Tutweiler Prison for Women, and men were sent to the Limestone Correctional Facility, which is on the Tennessee COMPUTER AIDED TRANSCRIPTION/keyword index = nm iin Oo wo ~JI 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 87 border many miles from their families. They lived locked away from the rest of the general non-HIV population. They had no school, no recreation and no work and they had no access to the law library. The entire prison knew that they had tested HIV positive because of their segregated status, and outside visitors were warned before they came to visit that the prisoners they were coming to visit had AIDS and the parole board was notified of each prisoner's HIV positive status. I think that one of the most tragic aspects of this litany of horrors was the prison system’s callous disregard for their medical needs. The contract medical providers assumed that HIV disease was completely untreatable. They were given Tylenol for their pain and ignored entirely until the verge of death. Contrary to what they say, AZT was not provided to prisoners until they were almost dead and they never took T cell counts. The responsible physicians curing deposition admitted that they had not heard of aerosolized Pentamidine. Our medical experts, including Dr. Cohen who testified here _@arlier, said that every single case of AIDS and COMPUTER AIDED TRANSCRIPTION/keyword index > Ww hh nn in 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 88 Symptomatic HIV disease was mishandled, every one. Several prisoners died as a result and countless others suffered unnecessarily. On the other side of the fence, the apparently uninfected populations at Tutwiler and Limestone were given no education about the disease. Many were terrified of living on the same grounds with the HIV positive population. AIDS panic gripped the prisons. I should say it also gripped the community in which they were located, Capshaw, Alabama where Limestone was located, the community was afraid to have their sewage mingled with the sewage from the prison because they thought that mosquitos would then breed on the sewage and then infect the entire town. At the same time, prisoners remained ignorant of the means by which they could get infected. Many of those who had tested negative one time on intake thought that as a result they could not possibly be infected nor could they ever become infected in the future. I want to point out two other appalling aspects of their program: One is that we had very serious concerns about the testing quality that was COMPUTER AIDED TRANSCRIPTION/keyword index Ww po oOo NS DTD WH 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 89 conducted by the contract medical provider. The laboratory technician admitted that she had no idea how to conduct a Western Blot and she would often call the Public Health Department in the middle of conducting the test for instruction and we later put on evidence at trial of several cases of misread Western Blot results. Secondly, the HIV positive prisoners in Alabama spent on an average more time in prison than HIV negative prisoners and that is because they are not eligible for community release and also because the parole board was notified of their HIV status, even though there was not an official policy that would deny HIV positive prisoners the opportunity to be paroled, they’re often not able to get paroled because potential job or home placements turn them down because of their HIV positive status, so they tended to serve their entire sentences in quarantine. During the course of the litigation in Harris v. Thigpen, many of the conditions I have described did change and improve, and I am convinced that this is due to the lawsuit. However, the Department has clung obstinately to its policies of segregation and testing, mass testing. COMPUTER AIDED TRANSCRIPTION/keyword index NO tt om w& 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 90 The case went to trial in the spring and summer of 1989. We challenged the testing and segregation program; the failure of the Department to provide adequate education and testing and counseling, the grossly inadequate medical and mental health care and the denial of law library and programming to segregated prisoners. We brought it as a class action on behalf of all Alabama prisoners because our view was that it was not only those who tested positive who were affected by these policies, but all prisoners were subjected to the mass testing, all prisoners were harmed by the failure to provide adequate education and we were convinced because of the testing error potential that a number of the prisoners who were in the apparently HIV negative population were probably infected, and in more cases likely to transmit the disease than those who were segregated. I have in my testimony, because I realize I’ve run out of time, a summary of some of the reasons why we are quite optimistic that we will obtain a reversal in the 1ith Circuit. The trial judge in our case found for the defendants on every single count, but we also think he made a number of COMPUTER AIDED TRANSCRIPTION/keyword index wn oo Co sx OH 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 91 legal errors and really made no findings of fact, so we are optimistic that we will prevail. I have provided for you all a copy of our trial brief which summarizes better than I could today the facts of our case. Also an article from U.S. News and World Report which describes for you the quarantine units in Alabama and a copy of the trial court’s opinion which I think you'll be apalled to read. Thank you. DR. OSBORNE: Thank you very much for your very important work. I think if I could ask everybody to give their,testimony initially, then we'll have a chance to interact afterwards. DR. MAISONET: My name is German Maisonet, I am the chief of HIV services for the California Medical Facilities Department of Corrections of the State of California. I am a transplanted New Yorker, and I’m educated and raised here in New York City. I did not go to medical school to take care of AIDS. I’m a pediatrician and pediatric oncologist by training. I was very involved in child abuse and later found a link between child abuse and drug _ abuse. COMPUTER AIDED TRANSCRIPTION/keyword index oo CO NN TD WT OU elUlUWwGDDUlUDN OD Oe _ oO 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 92 I volunteered to become the medical director of a recovery home in my neighborhood, which became the largest and most respected recovery home for gay and lesbian alcoholics. In 1980 and ‘81 the nightmare began. Briefly, the California Department of Corrections has approximately anywhere from 60 to 85,000 persons enrolled in the CDC system, and when we use CDC, we mean California Department of Corrections, small CDC. They are in the following status; either inmates or parolees, and as inmates they’re either in prison camps, prison itself, honor camps or they may be in a California Youth Authority or they may be inmate patients at one of the three major medical facilities, Chino Institution for Men, California Men’s Colony, California Medical Facility and there are two to three women’s prisons, the largest being Fontana Institution for Women. California Medical Facility is the largest prison hospital in the state. HIV testing is voluntary at our institutions. The only situation in which there can be mandatory testing of an inmate is during a staff assault, if there is any thought that there might . have been transmission of any contaminated body COMPUTER AIDED TRANSCRIPTION/keyword index no WwW & Ww hb 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 93 fluids which could act as a contagant. Seroprevalence in prisons in 1987 to 1988, three to five percent our inmates arriving at the Northern Reception Center at the California medical facility tested positive in a blind survey. However, this survey is flawed, since the bloods drawn were drawn through venous puncture, arterial punctures, especially since addicts who had a longer time using drugs, who had collapsed their veins were more likely to be involved in high risk behavior for a longer period of time were excluded. Therefore, it’s not surprising that when I reviewed some of the data from inmates voluntarily testing at the California Medical ' Facility, Northern Medical Reception Center, inmates stayed there for approximately three months, California Medical Facility is where they are sentenced after they’ve been back to prison and the State can be anywhere from nine months to as long as life, I found reviewing it for the past 13 months seroprevalence of eleven percent. Which is a very sad tale and that is the longer our inmates stay in jail the longer they’re likely to be infected, and so people are being . infected in jail. It’s a myth that they all come in COMPUTER AIDED TRANSCRIPTION/keyword index oO WwW -& tw ~J 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 94 infected. Many of them are being infected in jail. However, I cannot explain one phenomena and that is there’s a much lower rate of sexually transmitted diseases amongst these inmates who when they leave the prisons, especially if they’re heterosexual and more likely to participate in the epidemic of syphilis, gonorrhea and chlamydia. I have not been able to completely decipher this. Housing: Once an inmate tests positive, their segregated. In our facility they’re either in what we call bl or Nl wing, and they’re closed to the general population. Several years ago, due to the lack of participation in the other programs allowed to general population inmates, our inmates sued in the now famous Gates versus Majon case, and a pilot program was established for a select group of inmates who are HIV program who are allowed to participate in a general program, they're all housed together. This had a positive effect. The number of inmates who are testing voluntarily in our prison has jumped from 40 per month to approximately 100 or 120 per month. Seroprevalence rate is still the same. It’s recently _ dropped slightly. That’s because we believe we've COMPUTER AIDED TRANSCRIPTION/keyword index 86RD 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 95 gotten most of the individuals who are willing to test. In addition to the modes of transmission which are cited outside of prison, one must remember that a major mode of transmission is tatooing in prison. There are several things that we do, and I'd like to tell you about those briefly, and then I’d like to tell you about the deficits in our system, which are many. At this point, we have an HIV service. Please don’t think that this is a huge service with many, many people. There are exactly two of us who are full-time there. We have 8,000 inmates, and we're responsible for all HIV care to approximately 250 inmates, rapidly growing. The number of inmates that we get positive per week is about one to two new inmates from our own institution per week, not to mention as many as ten transfers per week from other institutions. Since we have the physicians who have more experience, we get approximately ten transmissions. At this point we are the HIV oncology center and we tend to take all inmates with T cell counts less than COMPUTER AIDED TRANSCRIPTION/keyword index mo CO NS DD WH Se Ww 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 96 200. The fallacies and some of the deficits that we have: First of all, there is no medical, any medical or rational or scientific basis for the segregation of inmates who are HIV positive. In fact, it creates a myth, and that is they are locked up there, I do not have to watch out. The number of custodial staff and professional staff who participate in what I would call less than adequate protection of themselves, I think increases when inmates are allowed to--when they’re segregated. Second thing is the inmates themselves believe that they are now safe. My greatest problem at this point is not my HIV positive inmates. My greatest problem now is having putatively heterosexual men continually solicit sexual favors from our effeminate male homosexuals. California Medical Facility is also a facility that houses most of the men convicted of rape or sexual crimes in the State of California. So housing has created this myth that--segregated housing has created in myth that we don't have to worry about HIV in the general population. Obviously, with a seroprevalence rate of COMPUTER AIDED TRANSCRIPTION/keyword index 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 97 3 to 5 percent out of 8,000 inmates, you can quickly come up with the fact that most inmates who are HIV positive have not been identified and are still involving themselves in either high risk behavior in either one form or another and infecting themselves and others. The problem becomes greater because although prisons seem to, because we want to lock them up and put them in jail, seem to portray or represent, project this image of a responsible into society, we are not, we are not being responsible. First of all, we don’t give our inmates any condoms. As a physician I am limited as to the words that I can use, and I can tell you publicly that I do not follow those guidelines and restrictions placed on me by the state. And I don’t intend to, because I ama physician and I answer to a law that seems to be a little higher than any law that the courts can. I think something really happens to society, which is very sad, when physicians feel they have to answer to custody. I think it’s very sad. I don’t think we have to look much beyond Germany to see what happens. Conjugal visits: Our inmates are not COMPUTER AIDED TRANSCRIPTION/keyword index oOo Ww & jW NN fe 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 98 allowed conjugal visits because they’re HIV positive. Now let’s review that. And the reason for that is we're going to bring an HIV infected child into this world. Well, obviously, most inmates are not, who are HIV positive are not identified. We don’t provide condoms there, so I see a little bit of a dichotomy and I believe that it’s basically, that it’s not okay for people who are HIV positive to be sexual, if they’re identified. So what we’re saying is if you're HIV positive, we will take away and you volunteer and you allow us to follow you, then you will take your rights away. The second igs there is no psychotherapy available in any adequate amount for our inmates. There’s no proactive planning, we still do not have a five year plan with California Department of Corrections. Overcrowding: It’s very frightening the amount of tuberculosis in our institution is going up very rapidly. There is a rule of thumb we tried to teach all our physicians. If PPD reactive, you are HIV positive until proven otherwise in our institution. This has been lost on our physicians, who are very glad to see an HIV team, and we keep on COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 99 telling them you are taking care of most of the HIV positive inmates, not us, but they still do not wish to take care of many of our inmates. A major problem that we now face is hospice care. Most of our inmates are going to die in our institutions and we have no place to place them. Some of our inmates, and I’ve have to do this, I've had to revoke their parole and call their lawyers and say I’d rather have them die in jail than die in the street. I think there is a dignity of life which even a prison should not take away from a person once they are sick. Societal deficits: First of all, it’s very sad to say that most of our inmates, especially men of color, and poor white men are men of color, get better medical care in prison than they do when they’re free men. So we reward people with better medical care when they commit crimes than when they try to lead complete decent lives. In other words, when our inmates are paroled they have worse care when they’re free men. This would account for the recidivism rate of approximately 90 to 95 percent amongst our HIV positive men who are identified. They come back to jail because they get better COMPUTER AIDED TRANSCRIPTION/keyword index ao ww ~J 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 100 medical care from us. We must remember that MediCal and Medicare will not pick up these inmates. Two, there’s a double message we're giving these inmates. We ask them to--we’re basically teaching people outside of prison how to continue at some times to involve themselves, quote, in high risk behavior in doing it safely. You must understand that most of my inmates get into jail because they were involved in high risk behavior. They’re either involved in sexual activity or they were involved in drugs, and there's a myth that the alcohol, which is the drug of choice amongst most of our inmates, if you do not believe that, they can process as many as 75 gallons of alcohol in a weekend, we have removed that many from our locked units, they do it with their fruits or vegetables, or whatever. They can get alcohol in, I don’t know how they do it, but they do it. Life is tedious but never dull in the state prisons. The other thing, and this is one I think I’m really very bothered by, and that is that most of my inmates, I would say 90 percent of my guys have been victims of childhood molestation or rape. Prison is not a place for people who have undergone COMPUTER AIDED TRANSCRIPTION/keyword index oO Wm 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 101 that, hospitals are, and we’re locking up the victims and it seems that the perpetrators are getting away. I can assure you, of all my inmates, 90 percent of them have been victims of molestation but only one to two percent have ever been perpetrators. I think there’s something going on, I think we have to look at that. HIV is pointing up some very glaring discrepancies and very sad things we are not doing. There are six things I would like the Commission to remember, if I had to. First, the virus is not impressed, it doesn’t matter who or what you are, what you think or what you believe. It’s what you do and it’s obviously not impressed with the correctional facilities, because we’re not doing a good job. One of the things I would like to point out is that the reason that we have a higher rate in the state prisons as opposed to the federal prisons, is not that we’re doing a worse job, it’s that most high risk behavior is a felony. It‘s not a federal crime. That’s why we have a higher seroprevalence rate. Prison is not adequate treatment for COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 102 people who are alcoholics and drug addicts and we basically say that people who do not have access to third party payment deserve to be treated in prison. I’m not there to treat alcohol and drug addiction necessarily, but that’s what most of my inmates are there for. The achilles heel. We have an epidemic, which basically is transmitted sexually or through IV drug use, and if you ask most physicians what two disorders. they’re taught least about in medical school, it's sexually transmitted diseases, and in addition drug and alcohol abuse, and the patients they least like to treat are people who are not compliant with their treatment, are not reliable historians, cannot pay their bills and do not keep their appointments. That is the profile of most inmates in jail, that’s why we can’t get adequate treatment for them. None of my inmates, and I would like to say this and it is a political statement, but I have to say it- None of my inmates have a pilot’s license, none of my inmates are bringing the drugs into jail. It’s either the doctors, the custodial officers or some of their relatives who are coming COMPUTER AIDED TRANSCRIPTION/keyword index ao in 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 103 in. That’s how drugs get into jail... Five, diabetic IVB users have a markedly lower rate of HIV infection, markedly. If you look at IVB users, you might also find that needle distribution does work. Six, Medicare and Cal will treat the complications of drug abuse and HIV, but they will not in any way, shape or form recognize chemical dependency. Therefore, society is going to wait until the patient gets sick. Therefore, we make money from keeping people sick and treating their illness than preventing illness. I think the inmates understand that, and last, but not least, medical care is a privilege in this country, it is not a right, and if that is true, then those people who are not privileged, basically the poor blacks, Latinos, Asians, prostitute IV drug users and gay men and women have the right to poor medical care. Thank you. DR. OSBORNE: Thank you very much. I'm tempted to say that New York State’s loss was California’s gain. I’m absolutely tempted to say that pediatric’s loss is internal medicine’s gain. As a fellow pediatrician, we used to protest that COMPUTER AIDED TRANSCRIPTION/keyword index mn WN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 104 children are not just small adults, but I think you’re beginning to demonstrate that adults are just large children. MS. HANSSENS: I’m Catherine Hanssens, I'm a staff attorney with an agency called the Department of the Public Advocate, which is a statutorily created agency with the mandate to represent the public interest, and even in our own agency we don’t always. agree what that is. There's a subdivision of the public advocate, the Office of Inmate Advocacy, which is where I work. Part of my work has involved representation of inmates on AIDS-related issues, and I’m basically the Department’s AIDS person, for whatever that’s worth. I brought a corrected copy of my testimony, if that’s of interest to anybody, so I can provide a copy to the stenographer if you like. The conditions under which incarcerated people in New Jersey are confined varies with the system and the institution. The State Department of Corrections does not test everyone on admission, but they do automatically segregate everyone who advances to a diagnosis of AIDS. They are segregated in COMPUTER AIDED TRANSCRIPTION/keyword index > iW hb Oo & Ss HO Ww 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 105 what’s called the special medical unit. Unfortunately, contrary to the suggestion implicit in the*name, the SMU is not an infirmary, but an involuntary administration housing area, and there are two in the state. There’s one in Clinton for women, there is one in the maximum security prison in Trenton. Regardless of prisoners’ classification status, before their AIDS diagnosis or the level of their health after they recover from the opportunistic infection which triggers their diagnosis, these prisoners remain isolated as maximum security prisoners, barred from participation in programs and facilities available even to other maximum security prisoners. All of these prisoners, including those entering the unit with minimum security status, are ineligible for work release or furloughs, regardless of whether they had successfully participated in such programs prior to crossing the magic line to AIDS. In fact, contact with other prisoners is prohibited for these people. In the State prison system, AIDS is a great equalizer, and a prisoner’s AIDS diagnosis substitutes for any other classification system based COMPUTER AIDED TRANSCRIPTION/keyword index > WwW WN ao nN DD WN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 106 on offense, prior record and the like, which governs all other prisoners in the system. In fact, there is only one other group of prisoners in the State prison system in New Jersey who are subject to automatic segregation without periodic review, and those are inmates under sentence of death. In county correctional facilities policies on housing of prisoners really vary by county. Some segregate only those who are symptomatic, some segregate those for whom there is evidence of seropositivity or just the suspicion of seropositivity, and in a lot of institutions outwardly gay inmates are automatically segregated for fear they may be carrying the HIV virus. Recreation and visitation opportunities for those persons are invariably restricted and the segregation of these inmates effectively announces their medical status to security staff and to the rest of the inmate population. Until late 1988, AZT was available in the state system only to the relatively small percentage of prisoners with HIV disease who were segregated in the SMU or the special medical unit. State prison officials have, since the filing of a lawsuit by our COMPUTER AIDED TRANSCRIPTION/keyword index Oo wm & is Nh Oo -~] 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 107 office, have expanded distribution of AZT to other medically appropriate recipients. However, distribution of AZT and other prophylactic measures in the State system still do not conform to protocol which the Centers for Disease Control and ovr own Department of Health have recommended and I continually receive reports of chronic delays in the diagnosis and treatment of persons with HIV disease. The diagnosis and treatment of seropositive individuals in county jails is even more unpredictable. I’ve had a number of experiences where inmates entering a county facility with a prescription for AZT were not able to get the continuation of the drug until our office intervened. Independent medical assessments of county jail inmates for treatment with AZT and Pentamidine is the exception rather than the rule, and I think it’s that kind of situation that indicates that the jail officials’ zeal for identifying and segregating seropositive inmates often has absolutely no connection to a regiment for monitoring or treating these inmates. The major issues affecting treatment for prisoners in New Jersey with HIV are in part a COMPUTER AIDED TRANSCRIPTION/keyword index oo wn A UI 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 108 product of the confusion, conflict and fear which underlies much of the public discussion of AIDS. The burden borne by prisoners with AIDS, I think is magnified by the general public hostility towards criminal offenders, even those who are detained for suspicion of a crime, and the perception that these people once incarcerated have no rights. The perception is reflected in the quality of medical care that I see in state and county facilities, and the lack of concern for the related needs of the ill. Prison officials and even medical staff often treat a prisoner’s diagnosis of AIDS as further evidence of wrongdoing, and the combination of ignorance and hostility has literally been deadly for a lot of prisoners in New Jersey. One of the most disturbing manifestations of that type of hostility and ignorance which prisoners with AIDS must deal, I think is illustrated through the attempted murder conviction of a New Jersey prisoner who was accused of biting a corrections officer a little earlier this year. Despite conflicting evidence and total lack of evidence at the hearing that the virus had ever been transmitted through biting, the inmate received a 25 COMPUTER AIDED TRANSCRIPTION/keyword index aon TN Ow 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 109 year conviction. At the time of his conviction he was within months of parole eligibility fora burglary conviction for which he was previously convicted. He must now serve an additional 12-1/2 years before he could be eligible for parole. The only witnesses to the assault were the correction officers who claim to have been assaulted, by the handcuffed inmate, who claimed he was the one assaulted at the time. The court in my view really recommended a death sentence as punishment for the inmate’s illness. This is particularly of concern to persons working in the corrections system who know that frequently excessive force against inmates is accompanied by the launching of assault charges against the victim to cover the assault. I‘ll try to briefly summarize the areas of primary concern. These are based on my representation of inmates and requests that I get for assistance, and I think they are the primary issues of concern to prisoners in New Jersey. Segregation and isolation is a primary one. With very few exceptions, the prisoners whom I COMPUTER AIDED TRANSCRIPTION/keyword index “ OD OU 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 110 have represented identify permanent isolation from the rest of the prison as a major aggregate in coping with their illness. Medical treatment is also a primary concern. Prison and jail inmates actually have a more clearly defined right to medical care than do free citizens. There are a number of court cases on that issue and there are also a number of court cases that say that the cost of needed treatment will never justify its total denial. Regardless, even those persons segregated in what's called the special medical unit continue to provide instances of weeks in delays to responses to extreme medical physical discomfort, missed medications, incorrect medications and lack of response when there are medical emergencies, and as a result, inmates segregated in this unit really live under the perpetual fear that when they are in medical crisis, there will be no one there to respond. Confidentiality and discrimination is another primary concern. It is a prisoner's right to privacy really, in terms of the bodily integrity brand of privacy is the same as any free citizens’ _ and unfortunately the State Department of Corrections COMPUTER AIDED TRANSCRIPTION/keyword index - WwW WN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 111 does not agree and routinely, even though there is this official policy of confidentiality, routinely releases information about seropositivity without releases and without a court order, even to outside law enforcement officials. The consequences of the release of that information are devastating, both to inmates who are facing parole, and to inmates within the system. Education and counseling is another serious problem in the state and county correctional facilities. “The State Health Department does provide education and training in the state and county system, but they have two people statewide to provide training and education to correctional facilities, police departments and emergency response personnel. It’s obviously inadequate. They estimate they reach about 4,000 prisoners a year. That’s about 13 percent of the 31,000 who are in the system on any particular day, so it’s barely scratching the surface. The continued incarceration of people with end stage AIDS under maximum security conditions really serves no conceivable penological purpose, but there’s no readily available mechanism in New Jersey COMPUTER AIDED TRANSCRIPTION/keyword index Oo oO SJ HD Ww 10 il 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 112 for the release of inmates who are terminally ill, and in fact, there is a medical clemency procedure in New Jersey, but the process is so prolonged and the criteria are so stringent that those who meet the criteria often are dead before their application gets to the Governor’s desk. DR. ROGERS: Ms. Hannsens, I‘'ll have to ask you to close rapidly, to my sorrow. We do have your testimony. MS. HANNSENS: The only other thing of primary concern is a dearth of persons on the outside, lawyers or otherwise, available and familiar with the corrections system to provide representation. It is virtually impossible for most of these persons in prison to resolve their medical and other problems within the prison system without outside assistance, and that’s a particular problem in New Jersey. Thank you. DR. ROGERS: Thank you. DR. OSBORNE: Thank you very much. Mr. Wiseman? MR. WISEMAN: I’m Michael Wiseman, working with the Prisoners Rights Project of the Legal Aid COMPUTER AIDED TRANSCRIPTION/keyword index oO Oo JF HD Ww 10 li 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 113 Society of New York. This is my colleague Bill Roll, he’‘ll be happy to field some of your questions as well. It’s almost a torturous process to ask a lawyer to be concise and list in ten minutes the major problems in a state system like New York. Since I couldn’t possibly do that-- DR. ROGERS: Let me just respond and say this is eloguent testimony, it’s very powerful, we hate to cut any of you off. - MR. WISEMAN: In the expectation perhaps of being cut off, I compiled some exhibits which I didn’t get to Miss Porter in time to have massively reproduced. I had ten of them with me, they're all gone, I'll have this copy with me, and I’ll be referring to some things in there. We have brought suit against the State of New York on a statewide basis under the lawsuit captioned "Inmates of New York State with HIV Infection versus Cuomo and Other Defendants." That complaint is contained in these exhibits, and it sets forth in much more detail our view of what the major problems are. I’m going to be happy to depart from my COMPUTER AIDED TRANSCRIPTION/keyword index Ww NN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 114 prepared testimony and try to import to you a sense of the urgency facing New York State, and I imagine many other states, as well as respond to some of the issues that have been brought up so far this morning. If I could use one word to describe the present state of affairs in New York State, "cataclysmic" comes to mind. If I thought of another word, "disastrous" would certainly come to mind and "emergency." Obviously, the whole AIDS epidemic can be categorized in that way, but we have an emergency within an emergency. New York State has approximately 55,000 people incarcerated in about 60 facilities. Estimates are about 20 percent are seropositive and at any given time approximately 1,000 of those people are actually symptomatic. Statistics are that people in New York State prison who are HIV infected live one-third as long as people in the community, even accounting for demographics. An IV drug user in a New York State prison can expect to live one-third as long as a drug user in the streets of Manhattan. As of two years ago, about 28 percent of people who were autopsied were _ identified as being HIV infected for the very first COMPUTER AIDED TRANSCRIPTION/keyword index mm Ww Nd mn wu 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 115 time at autopsy. That's a shocking statistic. In the city jails, the situation is almost as bleak. Approximately 7,000 of the people who pass through New York City jails a year are HIV infected, and it is also the leading cause of death in New York City jails. Nothing in my professional training nor in my life experience prepared me for this case that I've been working on for the last two years, going from prison to prison, interviewing ill and dying men and women who had no hope of early release, who were housed hundreds of miles and nine, ten hours from their families, who were receiving minimal, if any medical attention, and who are asking for help. It was truly one of the most remarkable experiences of my life. | Getting back to my office the next week and getting anguished Phone calls from their family members, thinking at last help was on the way, only to have me tell them, "I’m sorry, there’s very little we can do, there is no early release, we can’t make them do more in an individual case than what they’re doing," just hightened the sense of anguish that I and my colleagues felt. COMPUTER AIDED TRANSCRIPTION/keyword index nN) mo iW fh Ww 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 116 What this committee can do to address this in a broad sense, this catastrophe going on in the State of New York, and just in response to Miss Freeman’s comments, this is New York State, this isn’t Alabama, some would think we’re supposed to be more enlightened, experience would dictate that’s not the case. I don’t think it’s a geographic distinction here. What needs to be done is the Government, the federal Government has to recognize the situation in New York State as a particularly intense disaster, much like the federal government moves in and provides disaster relief for other natural phenomena like hurricanes and earthquakes, that type of view has to be taken. Federal legislation recently passed allocated certain money to the State of New York and the City of New York. I’m not certain as I sit here today if that money is earmarked for Corrections. My guess is it's going to be split up among various competing groups. That certainly is not adequate. It’s a step in the right direction, but not adequate. Massive amounts of money must be allocated solely for the treatment of AIDS, HIV infection in Corrections. _ That is at the root of some of the or most of the COMPUTER AIDED TRANSCRIPTION/keyword index nN WwW & WwW WN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 117 other smaller issues that I could address, such as lack of acute hospital beds, lack of qualified providers, lack of adequate education and testing. Just to respond to a couple of the points. I’m a little disturbed hearing people make the comparison that, well, prisoners get better health care than people on the street. I really don’t think that’s an issue in any of this discussion, nor should it be. I like to think about that the tide will rise and bring up all the ships. Fortunately, prisoners do have at least the right on paper to adequate health care. If that right were enforced, I think the compassion and the knowledge learned and generated from that endeavor would hopefully help poor people in the community also to get health care. I don’t think the response to that comparison is to say, well, let’s not give prisoners too good care because then they'll just want to get back into jail to get care. I haven't met anyone who feels that way in jail. The Department of Correctional Services in the State of New York is truly a growth industry. Their budget this year was $1.2 billion and many of , the towns in upstate New York, Bear Hill, Danamora, COMPUTER AIDED TRANSCRIPTION/keyword index —& Ww ho ao vn no WM 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings * 118 just to name a couple, primarily the only business going on in town is corrections. When you think about legalization, I think you have to realize that you’re up against the reality that many people would lose their jobs if those facilities close down and drugs were decriminalized. I think you have to also look at the reality if you took that $1.2 billion, and I've been accused by many of the more particular conservative factions in my own family of being a bleeding heart in this issue, but it seems simple to me, if you took the money you spent on corrections and took a portion of that and put it back into the community for jobs, education, not just drug education but real education, you probably wouldn’t have as many people using drugs, you wouldn’t have as many people going to jail. That may be oversimplified, but it always seemed to me to make a lot of sense. I just want to point out that in this packet of exhibits, there is some description of the treatment afforded for women prisoners at Bedford Hills Correctional Facility, which our office has been involved in litigation in. It was compiled by COMPUTER AIDED TRANSCRIPTION/keyword index 10 uo CO SS DO Ww SF WwW NHN - oO 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings ~ 119 the court, the court did not hear that case, and I would like you to look at it in particular as the kind of quote-unquote "care" people in the State of New York are getting and the horrible shortfalls of that care. I also understand you saw the Fishkill Correctional Facility special needs unit yesterday. I included in my packet of information as well a rather lengthy report from the New York State Commission of Corrections which severely criticized one of the other special needs units in New York State which is located in the Sing Sing Correctional Facility. There are a total of three such facilities which have a whopping total of 36 beds to provide care for the 10,000 HIV infected people that are incarcerated, so I would urge you to look at that report as well. The last thing I want to comment on is the notion that, or the debate as to whether seroconversion is going on in our state correctional facilities. Obviously, prisoners don’t come forward and volunteer information if they’ve been involved in illicit activities within a jail. That’s obviously a limitation on any type of scientific analysis of the COMPUTER AIDED TRANSCRIPTION/keyword index > Ww Nh ui 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 120 Situation. From anecdotal and other sources, we estimate that approximately 30 percent of people in State prison engage in either sex, tatooing or needle use, other needle use. I dare say that if 30 percent of the population is doing that type of activity in one form or another, you can be certain, there’s really no debate in my mind, you can be certain seroconversion is going on in state prison. Did I do it in ten minutes? DR. ROGERS: Very nice. MR. WISEMAN: Thank you for the opportunity. DR. OSBORNE: Thank you for that set of comments and I think that give us a few minutes. We'll work in somewhat a revised schedule here and try to interact until about 12:15 with the group that just talked to us and then have the panel on women and HIV infection before we break for lunch at about 12:45. So we'll now have a few minutes with Harlon. COMMISSIONER DALTON: I have a few questions for Mr. Wiseman and Dr. Maisonet. First, a comment for Mr. Wiseman. I trust COMPUTER AIDED TRANSCRIPTION/keyword index mam WW NN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 121 you did not understand Dr. Maisonet in saying that for many black men in this country they have much better medical care inside than outside, that he meant that to support lowering the quality of health care in prisons. And I hope you don’t assume that anyone sitting at this table would draw that conclusion, so I think you may have been just a little too sensitive. It seems to me that the meaning of that statement is that we need to do something about the general quality of health care in this country on the outside, and it helps dramatically illustrate just how poor the quality of health care is in many of our communities, so I don’t think anybody got confused about that, so please sit back and relax. Similarly I hope you don’t mean to compare New York to a state like Alabama. Alabama is a special case off the charts, and I think it doesn’t help matters to try to make New York appear like Alabama. You could still say all that you need to say about the problems with incarceration for people who are HIV positive here in New York. My question to you, though, has to do with _ your last comment about Fishkill being one of three COMPUTER AIDED TRANSCRIPTION/keyword index 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 122 state prisons with special needs units with a total of 36 beds for I guess 1000 symptomatic inmates. Are you’ suggesting that--well, I guess my question is, should the special needs unit be the only medical care facilities for symptomatic inmates, or in your vision should essentially all the health care facilities within New York State be capable of dealing with symptomatic HIV inmates? MR. WISEMAN: In my prepared testimony I cite a statistic that a study at New York City showed 17 percent of people leaving an acute hospital visit or stay for HIV infection required a level of care that’s called in New York State skilled nursing care. The 36 beds that exist right now in New York State that are special needs beds in our view are nothing more than segregated, HIV segregated infirmaries. They don’t provide a level of care that is necessary for people who are just recently over an acute episode and who need more than just infirmary care. In other words, they need to have doctors around them almost all the time or on call, they need to have nurses around all the time, they need to have specially trained personnel to recognize the _ progression of their illness. That capacity in New COMPUTER AIDED TRANSCRIPTION/keyword index li & ao nv HD Ww 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 123 York, and there’s no controversy on this, simply doesn’t exist. The controversy, that is, there is no controversy as to whether it exists, it simply doesn’t exist in New York. There are no skilled nursing facilities in any of the correctional facilities, nor do they have access to them in the community, which means right off the bat 17 percent don’t get that level of care. COMMISSIONER DALTON: Are you suggesting that, and this may be putting words in your mouth, but you may want to chew on them, are you suggesting that all of the medical care facilities within New York State institutions should be capable of treating symptomatic patients, but that there’s a need for facilities that can treat people coming back into the system from outside hospitals with quite acute needs and that’s a role that’s supposed to be served by this Fishkill unit that we saw and the other two units, and it’s not being served? MR. WISEMAN: That’s essentially right. COMMISSIONER DALTON: My question for Dr. Maisonet, you said many, many wonderful things. One of the ones that I had difficulty figuring out how to COMPUTER AIDED TRANSCRIPTION/keyword index > Ww ih wo Oo NN HD wt 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 124 operationalize, you said that doctors ought not to answer to custody, that is to say-- DR. MAISONET: Yes. COMMISSIONER DALTON: And you clearly do not, aS you made quite plain, and I wish we could clone you, I think we can’t. And in my experience, one of the real difficulties is there are a lot of dedicated doctors and nurses and physicians’ assistants out there in prison systems around the country, but that ultimately the final authority on medical decisions as well as custodial decisions is custody, is the warden or even people below the warden, and how can we possibly get around that other than having ornery people like yourself? DR. MAISONET: First, for Mr. Wiseman, I understand your concern, I think there are people in this country this would take what I would say and turn it around and try to lower the medical care. MR. WISEMAN: I wasn't suggesting that. DR. MAISONET: No, but I’m saying that. I think it’s not an easy position to be placed in, but from what I have seen at our facility is that when we talk about HIV care, we're not just talking about the inmates, we’re also talking about COMPUTER AIDED TRANSCRIPTION/keyword index nH OF F&F WwW ND 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 125 the custodial staff as well as the nursing staff, because the custodial staff spends even more time with the inmates than I do or the nursing staff does. The first thing we did when we came in was we Saw our institution had no, quote, even the foundation of an infection control committee or employee occupational health service, and that’s what the HIV team served as, we served as a source of information for them, so we weren’t seen as being antagonistic, we were seen as bringing the level of medical care not only for the inmates but also for the custodian staff up. I don’t know if we’re different than a lot of institutions, but we have found that there’s a group of officers that prefer to work on the HIV unit, because they do become attached to some of the inmates, and they themselves have served as a source of information for other officers. I think what happened is that as people finally accepted the fact that HIV was a reality in the prisons, there seemed to be more of a decrease in the amount of tension, more of a taking on of responsibility on the part of everybody including the physicians, but I think the custody that you saw very COMPUTER AIDED TRANSCRIPTION/keyword index Ww ND 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 126 quickly, they needed information to protect themselves and we took advantage of that and exploited that and allowed us to establish a very good working rapport with our custodial staff. I don’t go in there saying, "You're custody, you’re wrong, you’re not at risk for HIV infection, you’re putting these guys down." That's not the way I went in. "I'm a physician and you have as much right to the information as the inmates do, please utilize it. I’m going to take time," and that seemed to work out nice. COMMISSIONER DIAZ: Just very, very brief questions which you might answer in one or two words. I’m surprised at the high rate of recidivism, and I’d like a comment on that, in your prison system, and also I wonder if you can tell us about the need for education of families and communities who will receive these prisoners once they’ve been out, and I think you’ve been the only individual in our two-day visit here that’s called to our attention the possible drug connection between staff and correction officers and the persons there, and I'm surprised this has not come up, that this country must confront, and I would appreciate getting COMPUTER AIDED TRANSCRIPTION/keyword index 12 ao ut if. 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 127 for the record, giving us your impression, having served both coasts. DR. MAISONET: We do not have a formal program for continued outreach to the families, I think it’s something we have to look at. We are obviously during conjugal visits having non-HIV identified inmates having conjugal visits and pregnancies are resulting from that where an HIV child is being created. As far as the drugs, it basically comes down to who is not searched before you come down to prison. It basically boils down to doctors, nurses and custodial officers. Cocaine cannot be fermented like alcohol, it has to come from somewhere. It doesn’t come from little birds and the stork doesn’t bring it, so somebody’s got to bring it, and sometimes it is the family members who do bring it in. I mean, it’s been well documented and it’s not something at least in our prison that we’re running away from, it is a problem we have had some of our inmates die of overdoses of cocaine and heroin in our prisons, so it’s something we've had to face. Luckily, our warden is one of the few COMPUTER AIDED TRANSCRIPTION/keyword index ry = no wm 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 128 persons who really is seriously questioning segregation of inmates and in fact the director of the CDC, small CDC, is questioning this because it's creating more problems, really, than the CDC itself can handle at this point. DR. ROGERS: Just a commentary. The four of you have painted just an appalling picture, man’s inhumanity to man in our prison system, and something has gone dreadfully awry with it and we've heard that loud and clear and AIDS seems almost a final straw. I think you'll see that reflected in what this Commission responds to. DR. OSBORNE: Thank you very much for your very important testimony. We appreciate you being here. The next panel will be Brenda Smith from the National Women’s Law Center and Marilyn Rivera, founder of the ACE Program, which has already been referred to on occasion, and we appreciate you being with us. If you can, as before, keep your comments brief and give us a little chance to interact, we really appreciate the opportunity. MS. SMITH: I'd like to thank you for COMPUTER AIDED TRANSCRIPTION/keyword index A in 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 129 inviting me here and I’ve created plenty of entertainment by getting Stuck in the door and what I'll do is, I'll try to be very brief. You have my testimony, and I think that the testimony that you received thus far is really wonderful and it’s really done a lot in terms of my education. What I’d have to say is I’ve come to this issue fairly recently and really through the back door. JI am not a physician or have any experience with the public health system through training. I am a lawyer. Prior to being a lawyer with the Women’s Law Center, I was a public defender in the District of Columbia, and prior to that I clerked for the presiding judge of the Family Division, who’s a very activist judge in the District of Columbia, so I’ve done a lot of work with children, families and with women. One of the reasons that I left the public defender service was because I really felt that what I was doing was putting my finger in the dam and not really dealing with some of the larger problems that brought women into the system. I felt by working with the Women’s Law Center I would bring a broader perspective to the issues of women which I felt were COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 130 not being met in the criminal justice or correctional setting. What I have found in working with the women’s organization is that there are few women’s organizations, and I probably have to say with the exception of maybe Legal Services for Prisoners With Children out in California and some of the groups, some of the great groups that have come up in the prisons, there really are not women’s groups that are dealing with the issue of crime and drug dependency and the toll that it takes on women and their families and that’s the starting point for me. In trying to do some background and come up with some numbers and some figures on how HIV affects incarcerated women, I found that there was a Significant amount of difficulty, and I’m also having that same difficulty with the testimony that I received. What has happened is the same thing that happens with women in the prison context. Because their numbers are so small or viewed as so small, there’s very little attention paid to ferreting out or parsing out information which is specific to them. But there are some things that I think this Commission should be aware of, and I’ve talked COMPUTER AIDED TRANSCRIPTION/keyword index 13 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 131 about some of them in our testimony, and I think as I said, that it’s useful to give a brief profile of the women that we’re talking about. Now, I have to admit that my experience may be somewhat skewed because I work primarily with women in the District of Columbia, and, as you know, white people do not commit crimes in the District of Columbia. Everybody in jail is black. We don’t have Latinas, very few, and so it’s somewhat skewed, but I do have some national information as well. I think that Mark talked about up front the fact that for many years there were very few women in the prison and jail system, and that that number has really tripled over the last decade. We‘ve gone from 13,000 women in federal and state prisons in 1980 to about 41,000 now. That’s about a 25 percent increase in figures from 1988 to 1989, compared with about 13 percent increase for men. The District of Columbia led the nation with an increase Of about 54.3 percent. Now, those numbers are relatively small, because we went from about 372 sentenced females to about 574. And people have already talked about why we're seeing that increase in the number of people COMPUTER AIDED TRANSCRIPTION/keyword index —-_ Ww N 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 132 who are incarcerated. . The Federal Bureau of Prisons reports that 60 percent of the women who are in their custody are serving sentences for drug offenses. In the District of Columbia it’s 56 percent. I just draw your attention to a quote from Attorney General Dick Thornburgh upon the release of some statistics on the jump in the prison population. He labled the jump in prison population as an indication that more criminals, many in drug related offenses, are caught and punished. The criminal justice system is working, people who break the law pay the price. I’ll leave it at that. Though the female prison population is increasing at a much faster rate than that of the male prison population, I think there are several things that are different about the female prison population which bear some discussion. First of all, women are primarily in prison for non-violent, economic kinds of offenses, and even though some would disagree, I believe that drug sales is a non-violent economic offense. Another important difference, which I think has some significant implications for COMPUTER AIDED TRANSCRIPTION/keyword index om Ww AN an tn 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 133 treatment, is that many female prisoners, I'd say about 80 percent, were prisoners with children, so notwithstanding what was going on out in the community, they were taking care of responsibilities in the community, and that continues in the prison setting. Even though, of course, as all prisoners are concerned about their release status, about parole, the primary concern that I found among many of the women is what’s going on with my family, specifically what's going on with my children. 70 percent of the women in prison who have children are single parents and prior to their incarceration 85 percent of women prisoners who had children had custody of their children, compared to only 47 percent for men. In terms of the age, these women are primarily between the ages of 20 and 35 and they are in their prime child bearing years. The Department of Justice statistics reports that at any time about eight to ten percent of the women in custody of federal and state prisons are pregnant. MThere’s another number that estimates that 25 percent are pregnant and post partum. COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 134 I won’t even go into the statistics, because people have talked about a lot of numbers and I realize that we have some time constraints here. It’s included in my testimony. I'll just leave it to say that many of these women are IV drug users or had sexual partners who are IV drug users. Many of these women have partners who have been involved in the criminal justice system and who are not necessarily homosexual, but have engaged in same sex relationships with other men. The District of Columbia blind seroprevalence study, and I think there are a number of reasons for that, according to them, they say that it’s to not have to confront all the legal issues that you have to deal with for confidentiality. I think if they knew how many people really were infected with the AIDS virus, that they really would not be able to deal with them. What they have found out, though, is just from their blind seroprevalence study that 14 percent of male prisoners and 16 percent of women prisoners tested positive for the HIV virus. Notwithstanding those significant numbers, there’s one health educator for about 10,000 inmates and that doesn’t COMPUTER AIDED TRANSCRIPTION/keyword index 14 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 . Proceedings 135 include population, it includes correctional staff. Finally, what I would say is there’s a real need for treatment and education specifically targeted to women’s needs, that take into consideration the reality of women’s lives. Women are not out there alone, they’re out there with families and they are supporting children and they will go back to the community and they will also continue to support those children. And even though the numbers of women are relatively small, you also have to consider that the education that women will receive will also impact on those families that they will educate as well as to their children, many of whom are born HIV positive. And with that, I’m going to leave it, and then I'd like to hear from Marilyn. DR. OSBORNE: Welcome, and after you have had a chance to talk, we'll interact with both of you. MS. RIVERA: I just want to thank my higher power at this moment for being here, and I'd like to say that there are five different things that I'd like to discuss with you this morning related to incarcerated women who are HIV positive. COMPUTER AIDED TRANSCRIPTION/keyword index Ww bh 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 136 They are, who are the women in prison who are HIV positive, why they are HIV positive, what the ACE program is and how it is successfully serving this population, the need for extending ACE nationally and the need for increasing the number of programs that service HIV positive women in transition. I was incarcerated for three yéars and have another year before I complete my full sentence. I rapidly graduated from having shot heroin to ending up ona methadone program. I went straight to the pit. I never even bothered to sniff heroin. My experience as a shooter was no longer than eight months. I knew I wanted to stop so I went to a methadone program. I lied about how much I had been using on the streets and ended up on 60 milligrams on intake, which is three times greater than what I had originally been taking out in the street. I should have--well, this lasted another eight months and I dove head into crack. Somehow I discovered that crack alleviated my withdrawal Symptoms from methadone, and this was to become the most devastating move that I had ever made in my life. COMPUTER AIDED TRANSCRIPTION/keyword index NO Oo oO ~~] an wn & Ww 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 137 While my habit increased and my money dwindled, I committed my crime. I was a drill instructor in the United States Army, I served a full term and had an honorable discharge. I went on to become a correctional officer and decided after about a year that I would accept an offer that my brother made for me to join forces with him and become one of the first Latino brother and sister mortuary teams out ‘here in New York City. This attempt was quite successful and I served my community in this capacity for about six years. I ended up in a relationship with somebody ' who was addicted to drugs and in my effort to give that person a mirror image of what they gave me, I began to use heroin and nodding out in front of their presence. I did this because I felt I had invested too much of my time, energy and emotion and finances to allow heroin to separate us. I did not know what I was getting into. The point that I want to make to you today you might have heard before, perhaps with one exception. Today I come before you stronger than _ I’ve ever felt before in my life. I celebrate life COMPUTER AIDED TRANSCRIPTION/keyword index “4a SO OM 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 138 today. I've been sober for four and a half years now, and my medical Status is HIV positive. I didn’t know that when I was in prison, but I knew that I was in a high risk category. I shared works, and when I was addicted to crack, I exchanged sexual favors to support my habit. Crack is the highest form of high that many women, including myself have ever encountered. A large. percentage of women are going to jail for it. We all know that crack is an epidemic and we know how it perpetuates oppressive social and economic conditions. Unfortunately, women have embraced this demon crack. Since 1980 to 1990, the prison population has tripled. Women have turned to crack in a way that they have never used any other drug before. For example, women drug abusers do not have to wait for their man to cop this drug, nor do they have to wait for their men to shoot up, to help them shoot up, like we saw back in the '60’s and into the late ‘70’s. Men often shot heroin to their women, as opposed to women shooting up themselves. Crack is easily smokeable and it is everywhere. Not even the _Mmayor of Washington was spared from its clutches. COMPUTER AIDED TRANSCRIPTION/keyword index 15 bh wm ee Ww Oo wo ~73F nN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 139 There is an incredible psychological dependency to crack. AS a result women, addicted to crack will do just about anything to get it. This explains why a large percentage also of incarcerated women are HIV positive. Like myself, they, too, traded sexual favors for crack, sometimes engaging in unprotected sex. Some have shared needles with HIV infected people without knowing it. My consciousness with regards to the AIDS epidemic was arisen during my incarceration. This prompted the grass roots of a project designed by five founding members, including myself. The AIDS Counseling and Education Project is a peer based project. ACE offers support services for women in prison and has an educational component, certifies inmates as health educators. It has a buddy system for women who repeatedly go to and from the hospital with pneumonia. These women were HIV positive and most of the time didn’t even know it. ACE also has a counseling component which inmates can engage in a one on one peer counséling and sometimes that makes it difficult, because two inmates can’t be together alone at the same time without being supervised. It’s a privilege to COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 140 organize in prison anyway, you know, it is a privilege to get together and organize this. For this reason, I want to take this time to thank Elaine Lord, the superintendent of Bedford Hills and the AIDS Institute for our funding source, and the many people who helped make ACE possible. I'ma little nervous because this is like the first time I'm doing it and it really makes an important part of my life. ACE is an effective model that needs to be considered in prisons nationally. I am appealing to the state and federal government to fund more programs like ACE in prisons around the country. ACE is a process of empowerment. Since co-founding ACE, I have dedicated my life to working towards building a bridge which women can cross from prison back to society. As mentioned earlier, AIDS and drug abuse, specifically crack abuse, go hand in hand. As a result, there is a need for programs that provide therapy, fostering psychological detoxification from drug usage. I’ve been psychologically detoxing for four and a half years, okay? Any form of disease dealing with substance abuse is a problem that a person deals with for the rest of his or her life, COMPUTER AIDED TRANSCRIPTION/keyword index no Oo & WwW NS ~J 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 141 but recognizing the problem is the first step towards self help. Intensive therapy would help. There is a need for programs that deal with coping with life after prison. For example, programs that find housing and employment for HIV positive women in transition like Providence House, a halfway house located in Brooklyn, New York. While I was incarcerated, I was fortunate enough to have surrounded myself with positive programs like ACE that suited my need for growth. Other women around the country need access to these similar programs. When I was initially paroled, I found myself out of prison with practically no support mechanism. I was lucky, though, I managed to find Providence House and I had the will to stick it out, but there are so many other HIV positive women parolees who were not as fortunate as I was and they need a program to bridge their way to the point that I have breached, and with that I would like to conclude my testimony. DR. OSBORNE: Thank you very much, we appreciate the strength that it takes to testify and we're really very grateful for you for doing so. MS. RIVERA: Thank you. COMPUTER AIDED TRANSCRIPTION/keyword index Ww WN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 142 DR. OSBORNE: Commissioners? COMMISSIONER DALTON: It’s very nice to meet you face to face. I have a question for each of you, but let me start with you. Bedford Hills I think is a little special in the sense that they are willing to allow inmates to organize themselves and to empower themselves and they’re willing to allow women back in the prison who have been through the system, and my experience is that oftentimes other prison systems, institutions aren't willing to allow that much interaction between inmates and former inmates, and I guess I was wondering what you would say to other institutions to help them see the wisdom--because that’s going to be a big barrier to replicating ACE in other places. MS. RIVERA: If you want to eliminate the increase in overpopulation in your prisons, we have to look at it on a different level, one which we probably have overseen for many years. The fact is that women have special needs, and women, treatment for women, médical and psychological are different from the needs of men, and we have to make them independent of each other, especially with women, . because when categorically women go to prison, either COMPUTER AIDED TRANSCRIPTION/keyword index 16 mn > WwW 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 143 they are pregnant, they have children or they’re single, and one of the things that has worked for me through my recovery has been therapy. I was able to go back to my youth and isolate these issues and identify these emotions. A lot of us don’t want to do that, a lot of us, that’s where it begins. A person has to make that communication within themselves and turn that over. The fact that ACE allows that, that Bedford Hills allows us to go back is really important, because we speak the same language as the women that are going in, and we can more or less empathize with the feelings that are going on there. One problem, one major problem for me is, though, even having been a co-founder of this project, I have not been really connected with exactly what’s been happening with ACE. I have not really been considered even after my year and a half of being out here and on parole, to possibly even begin to bridge this. I’ve taken that into my own hands and I'm going to do it regardless, hoping that I will be able to establish and maintain that rapport with the women of the core group and Elaine Lord. I've never had a problem with Miss Lord and I don’t COMPUTER AIDED TRANSCRIPTION/keyword index no WN & wo wo ~J 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 144 think there will be, but I think that we need to be considered as an empowermental tool. Give these women the opportunity to find their--to claim their voice and to find their space, so that they can come out here and they don’t have to fall in the clutches again. We forget that crack is intensely psychological depending--we're not dealing with that, so a woman that’s been in prison will do four years and won't really physically go through a lot of heavy duty withdrawal, but psychologically, the first thing she’s waiting is to get her mega-hit once she gets out here, and if she doesn’t have a place, a shelter, if she doesn’t have a home to go to or ends up going back to the home she came from which is dysfunctional, she ends up going to a shelter or a halfway house or she ends up lying about where she’s Staying at just because she wants to get back out, so we have to begin to design programs that meet the specific needs for women that are experiencing this problem, and I don’t know what else to say. MS. SMITH: Harlon, what I'd say is I think what has to happen is it happens in increments. What I’ve seen happen with our program is, we run a COMPUTER AIDED TRANSCRIPTION/keyword index ~~ OHO iN Oo © 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 145 Similar program to ACE, but much more lawyerly, we can’t do the sort of things that Marilyn has been able to do, and I think she’s absolutely right. I have absolutely no credibility to talk to prisoners about drug use, about HIV infection at all. I mean, I can talk to them about getting their kids back, I can talk to them about strategic things like that, but what we were able to do is we as a group had a lot of credibility with the prison and what we did, let me just say is. What we did is before we even started our program, we went to the prison and we talked to the women for about four different times, two or three times each. We got them, two or three hours each. We got them to identify what their priorities were. A lot of them were around domestic violence, incest, divorce, custody, self-esteem issues and what we did was put together a series of workshops and an educational series around those things, but also the women really identified AIDS as something they really wanted education about and something they were not receiving in the prison setting. What we did then was we broke it for services with another organization that trained women COMPUTER AIDED TRANSCRIPTION/keyword index nO UO & ~] 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 146 who had been released from prison who were former prisoners and who allowed those people to come back. Because we were there, the prison never even thought about it, they never looked at it, they never thought that these were former prisoners. I think that’s one incremental way to do it, but I also think there needs to be support with current prisoners and others while they’re in there to build that community and I would say the approach we used is one way to start and then you move people along, but I think it can be done. MS. RIVERA: And I think also that clinical trials for women should be looked at, because I mean, just because a woman’s in prison, if you look at where the dysfunction came from, from the beginning, I mean, I wasn’t born a dope fiend, okay, and I didn’t, I was strung out on crack, you don’t really understand the psychological effects of it, but there is an intense, an extreme intense feeling that is overwhelming, and I don’t feel like there are enough programs out here that are dealing with it. The only type was, okay, you mandate me to a treatment program, which is really great. The only _ way that I made that work for me and not to say that COMPUTER AIDED TRANSCRIPTION/keyword index 17 a in 10 11 12 13 14 15 16 17 18 19 20 21 22. 23 24 25 Proceedings 147 I’m here because parole mandated me, was that I had to make a self conscious decision as to what I wanted to do with my life and I had to feel that I was worthy of something in my life, and women need to get in touch with the self all over again. Men and women, but specifically women, because women are the primary caretakers and they're the last ones that will receive treatment and one of the reasons that you don’t hear about women to women transmission or stuff like that is because it hasn't been documented. We don’t have clinical trials that document women’s transmission. There's just not much said about it, and I think that should change. DR. OSBORNE: Scott? COMMISSIONER S. ALLEN: I have a couple of questions for Marilyn. One is, what type of national network do you have at this moment to get out your message? Do you have any kind of structural setting to where you can discuss state to state, so forth? MS. RIVERA: Not at that level. They say you have to crawl before you walk sometimes, right? I work for the Narcotic Drug Research Institute. I am an outreach supervisor at the Bronx COMPUTER AIDED TRANSCRIPTION/keyword index oO CO 4 DTD WN Se WwW NHN _ © ey oy 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 148 AIDS research center there. I run a support group for women that we call the WOW Women, because we are the Women of the World. Recently, on August 1, 2 and 3 we were able to communicate our information about the group and personal experiences on Channel 41 with Miriam Ayama, and just a few newspaper clippings and stuff like that. COMMISSIONER S. ALLEN: We heard testimony yesterday that something like 28 percent, I think it was Rikers, that 28 percent of the women felt like there’s nothing they could do about HIV, and that seemed to be correlated with those that have been sexually abused, or forced sex, and although you can’t make a direct correlation, but how much fatalism is there within the prison setting of women of saying, "I’m stuck"? MS. RIVERA: When I was at Bedford from 1986 to 1989, and before the ACE project took off, I saw approximately 20 women die from some symptom of the HIV virus, because of not enough medical information or up to date medical facilities--the facility wasn’t equipped to handle the amount of . women that were HIV positive or coming in, or the COMPUTER AIDED TRANSCRIPTION/keyword index & Ww NN bh oo 4 rn mw 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 149 fact that you have women in there that had already been HIV positive and that were using drugs and were infecting one another from using syringes. COMMISSIONER S. ALLEN: One more question. Do you have any contact with women’s shelters in the city? I know your program is specifically for those what are HIV positive, but those in higher risk behavior and those that have been abused, do you have some type of interaction? | MS. RIVERA: There’s one particular shelter in the Bronx called Willow Shelter that we deal, we give them a lot of support and education. There are just not enough beds, there are just not enough services. Women that come out of prison that end up in shelters, okay, don’t have money, you have to start from the very beginning, because you’ve lost a lot of your identification, you have to go get your Social Security card, your birth certificate, and then you have to have a resume to get a decent job, and it’s the whole recidivism thing, it’s the whole revolving door thing. They're not prepared with life skills, and what I'd like to offer in the future, because I’ve been flirting with the design of a program I call COMPUTER AIDED TRANSCRIPTION/keyword index oO sn OO WF Le hUw&CUND 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 150 "Complete," basically because I’ve made a complete circle in my life and it’s a community organization motivating people long enough to educate. I feel if I could capture your attention and yourself long enough to provide you and raise your consciousness and begin to empower you through the arts, through theater, through writing, through poetry, through music, through education, through intention therapy, through support and counseling services, then you become a woman that will deal with the issues, and that will enable you to think about where you are today and what you have to offer society now. That’s a question I ask myself. It’s not what they can do for me, it’s where do I fit and what can I offer society at this point, what is meaningful. COMMISSIONER S. ALLEN: Thank you. DR. OSBORNE: Thank you very much. MS. RIVERA: Thank you very much. DR. OSBORNE: Now the Commissioners will take an abbreviated lunch break and we’ll try and get back closer to schedule by starting up again at 1:30, if we can. (Whereupon, at 12:45 p.m., a COMPUTER AIDED TRANSCRIPTION/keyword index 10 1l 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings luncheon recess was taken.) COMPUTER AIDED TRANSCRIPTION/keyword index 151 18 Oo 6 A HD WH FS Ww 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 152 AFTERNOON SESSION (1:40 p.m.) DR. OSBORNE: Let me ask the Commissioners who are here to please be seated so we can get Started. We’re running later and later and we have airplanes and things to think about and I don’t want to cut our important witnesses short. This afternoon, we'll start with Judy Greenspan, who is the AIDS information coordinator at the National Prison Project of the ACLU Foundation, who will total about fifteen minutes to get a chance to hear from her and also to ask questions. MS. GREENSPAN: First of all, I just want to say, it’s definitely an honor to be here and I appreciate this opportunity and also all of the prisoners who responded to my plea for testimony and information are also honored to be here. And in fact, I really regard my testimony as really a summary of complaints, injustices, faced by thousands of HIV infected prisoners in jails and prisons around the country, and if this could be the beginning of a development of a rational, sane, medically enlightened response to HIV infection in prisons, _ then we’ll have accomplished quite a task. COMPUTER AIDED TRANSCRIPTION/keyword index Oo wo aN DD Wh & Ww 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 153 AIDS and HIV in prisons has meant three things for prisoners: Lack of adequate medical care, frustrated attempts at AIDS education and plenty of discrimination. For two years, I have been innundated with hundreds of letters from prisoners around the country complaining of some of the worst abuse and I think we've heard a lot of it today, so I’m not going to give you a list, but I will say that all of them have said to me in their letters and also a number of phone calls, because we are one of the few agencies that receive and accept collect calls from prisoners, that they very eloquently can tell their own story, and I would hope that the Commission would look into some of the direct testimony. Having AIDS or HIV is bad enough, but you combine that with being in prison, and you have a very serious and deadly combination. Prison and jail administrators are now only beginning to take small steps to deal with this epidemic, and I believe and the prisoners are appealing to you to play a critical role, that the National Commission must play that role recommending a sane and national policy for the management of this disease in jails and prisons. COMPUTER AIDED TRANSCRIPTION/keyword index no Wm FP w~ ~J 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 154 President Reagan, as you may remember, had a response to AIDS in prison, and that was to set up mandatory testing or to urge mandatory testing, and we‘ve seen after three years that it really has not led to better policies. It’s led to segregation, it’s led to a highly stigmatized and discriminated against population. Reading the letters has only convinced me more that there’s a very serious situation developing in prison. Catherine Hanssens has talked to you about Gregory Smith, who is the prisoner in New Jersey who was recently convicted of attempted murder, sentenced to 25 years in jail, a death sentence, for allegedly biting a guard. But these cases, it’s not just Gregg Smith, it’s many prisoners, there have been over a dozen cases in the past year of prisoners who have been charged with attempted murder, attempted capital murder, assault with a deadly and dangerous weapon for allegedly biting a guard, and I will emphasize with you and I think we have the example of Rikers Island to prove it, that oftentimes in prison a prisoner is assaulted and beaten by a corrections guard for whatever reason, and that prisoner is charged with assault to COMPUTER AIDED TRANSCRIPTION/keyword index 19 WwW WN Ee 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 155 cover up this crime, and I think that’s what's going to surface with the Rikers Island fiasco, that these prisoners were brutalized by these guards, but combine that with HIV positivity, and it doesn’t become a disciplinary infraction for that prisoner, it becomes an attempted murder charge, it becomes perhaps a death sentence and the prisoner is discriminated against. Education is a real problem in prisons. It’s not being done. I don’t really care what the results of the NIJ study on AIDS in prison is. My word from the prisoners, and I believe them, that at the very most, prisoners are still seeing that old film, "AIDS: A Bad Way to Die," which sends absolutely the wrong message to them. They’re receiving one or two pamphlets, maybe they’re receiving the Surgeon General's report, none of which deals directly with them and it certainly doesn’t deal directly with the fact that many prisoners unfortunately operate at a very low reading level or are illiterate, so there's really not an educational message. So what the prisoners have done, they've been themselves involved in peer education and COMPUTER AIDED TRANSCRIPTION/keyword index no Ww 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 156 counseling efforts like Marilyn Rivera testified to about Bedford Hills. Only for the men in New York state particularly, organizing and setting up peer education counseling efforts has met with--their effort has been severely obstructed by the New York State Department of Corrections, and I have two examples that I want to bring to your attention. One is the case of David Gilbert, who is a prisoner in New York State, who has been moved since I’ve known him, over the past two years he’s been moved four times, and he is one of the original organizers of the AIDS education effort at Auburn and Since that time he’s visited four other institutions, just having been moved about three weeks ago. Cruz Salgado, and some of his testimony and letters are in your packet which I hope you can get, because I know some of them were given out, Cruz Delgado was recently moved from Greenhaven to Attica, and fortunately I will say that these prisoner educators and organizers wherever they go are organizing AIDS education programs, but it’s not being met with a very enthusiastic response by the Department of Corrections. There are serious problems with medical COMPUTER AIDED TRANSCRIPTION/keyword index aI Nn UW 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 157 care, and some of the letters I’ve included with my testimony address that. The prisoners complain of everything from insensitive physicians’ assistants to the fact that they can’t get their medicine, to the fact that there’s no confidentiality. Oftentimes, prisoner’s medical records are discussed when there’s a big crowd around. Many medical care providers in prison still are afraid of AIDS and HIV and won’t touch, you talk about hands on care, won’t go near the prisoner, won’t touch the prisoner, won’t talk to the prisoner, except in the presence of a corrections guard, and of course that means that there’s really no confidentiality. I‘m sorry that Dr. Moritsugu had to leave, because I wanted to bring to his attention some of the problems of HIV positive prisoners and prisoners with AIDS in the federal system, but I will say that it is an extreme problem, that of discrimination against people for release into the community, into halfway houses, parole discrimination based on the fact that the federal government still insists on testing people on exit, and also that it is an extremely horrendous problem, the problem of COMPUTER AIDED TRANSCRIPTION/keyword index Ww WN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 158 prisoners dying with AIDS, particularly in the U.S. Medical Center at Springfield, and I would really urge you to not only read the articles, but if there’s any way you could visit the Springfield Medical Center, any way you could take testimony from HIV positive prisoners and those with AIDS at Springfield and learn about the lack of quality of care they’re receiving. There’s no reason for prisoners to die in jail. They should be released. Anyway, I'll leave you with that, and just say that I think that there are a lot of very good people who are locked up in prison who are really beginning to make a dent, who are doing their own AIDS education efforts. I think they need our Support and together we can begin to tackle fear of AIDS, which I think is just as dangerous as AIDS itself. DR. OSBORNE: Thank you very much and thank you for your important work. It will be a privilege to get a chance to participate in some of the correspondence. Questions? COMMISSIONER DALTON: You mentioned Cruz Salgado, said he was transferred from Greenhaven to COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 159 Attica. Was he the ones involved with Hispanics United for Progress? MS. GREENSPAN: He’s one of the founders. COMMISSIONER DALTON: That was an extraordinary group of inmates able to bridge not only a gap between infected and non-infected, but between black and non-black inmates. Did his transfer have something to do with his involvement in HUP? MS. GREENSPAN: We believe that. There’s no way to know, they always say it’s for security reasons and they won’t talk about it. They have the right to transfer anyone they want anywhere they want and they have all the institutions to do that, and most of them are in these remote areas in New York State. Prisoners are transferred without any notice and without notification and without any due process hearings. We believe it’s because he was very outspoken and very visible within the system, and Greenhaven to this day are hostile to the effort, et cetera, to organize Hispanics United for Progress. COMMISSIONER DALTON: It’s ironic, because it seems to me that organization has done more for COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 160 maintaining peace inside that facility by sort of breaking down barriers and giving inmates a sense of their own self worth and some control over their own lives, and so it certainly is backwards, it seems to me, even in terms of control of an institution. MS. GREENSPAN: Right. And he along with David Gilbert were very active in organizing a program at Attica, which unfortunately because there was a reaction to some brutality on the part of guards, there was sort of an institution wide demonstration, now they're sort of back to square one and in the meantime they went and transferred David Gilbert out, so now Cruz is on his own at Attica, but organizing. DR. OSBORNE: I have a question that’s been growing over the last day and more, but especially in the testimony that we’ve heard, and that is, do you have any sense of the--I get a sense that there’s a discontinuity between the Department of Corrections or its equivalent and then the medical personnel to the extent that they are represented within the Department of Corrections, that there may be complete ignoring of medically appropriate advice. On the other hand, sometimes I get a sense COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 161 that the medical advice may not have been as astute and sensitive as we would want. Do you have any way of helping me with that? To what extent are we dealing with the discontinuity between two systems that don’t talk well to each other, health care within corrections as opposed to corrections personnel themselves and to what extent is there sort of a partnership in things not working as well as they might. For instance, HIV education is a very obvious place to ask the question, because it doesn’t take the resources that might necessarily be there to fulfill other medical qualifications. MS. GREENSPAN: See, it’s a very complex question, because different states do different things with medical care. Some of them contract out. Now, within that contract some of them say, okay, you’re going to provide the education, meaning the medical care providers, and in some of them they say no, you’re net going to do it, we're going to do it. What I found is that the medical services department tends to be, they don’t set the policy, they carry out the policy, but that the administrators are a lot easier to talk to and deal COMPUTER AIDED TRANSCRIPTION/keyword index no wm ~} 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 162 with than the Department of Corrections, which takes sort of a very penological, more corrections type of approach. What I have found, though, however, in terms of successful education programs is that they are really only successful when the system goes outside itself, when it goes out into the community to AIDS service organizations, even to the Department of Public Health, and brings them in. When it’s the medical care providers, they’re too wrapped up in what their financial situation is. I've heard too many times prisoners writing and saying the doctor informed them they can’t get AZT because it costs too much money and at this point what I’m alarmed about is the fact that most prison systems have not taken to heart the new FDA guidelines on AZT. They are not administering AZT for asymptomatic HIV positive. Some systems are, I know New York State is, New Jersey is Supposedly is and now what Catherine Hanssens says, it’s still not accessable in the state of New Jersey, so there’s a real problem with that, they’re always worrying about their pocketbook. And then, most unfortunately, the COMPUTER AIDED TRANSCRIPTION/keyword index oO co ~ 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 163 Department of Corrections is too much worried about Management and security to really deal effectively with, and besides the fact that prisoners do not listen to whatever anybody within the Department of Corrections does or says, so that I think the most effective education is the peer education effort, with the assistance of the outside AIDS service organizations. DR. OSBORNE: Thank you, that’s very helpful. Diane? COMMISSIONER AHRENS: I don’t know if this is so much a question as a comment, but as I've listened, particularly in terms of state systems, and I think that’s really what we’re talking about by and large today, with one federal exception, is that there doesn’t seem to be good communication, any kind of substantive linkage between State Department of Corrections and State Departments of Health, because we've heard in some states where the Departments of Health that we've heard about in prior hearings, and in those same states the Department of Corrections seemed to be going in opposite directions with respect to this issue, and I guess one of the things, _ and you may wish to comment upon this, but one of the COMPUTER AIDED TRANSCRIPTION/keyword index n WwW & Ww NN ~J 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 164 things I think this Commission needs to address or call attention to, is that desperate need for these two separate departments within each state to talk to each other at the very highest level. DR- OSBORNE: That’s what my question was getting at, but I was also trying to get at whether if they tried to talk to each other, would it work, how different are the cultures, and your answer Suggests that they may be a little too different, and you may need a third party communicator or something. Charlie? DR. KONISBERG: I/’11 share a kind of a personal experience during our last legislative session in Kansas that suggests that the cultures are a bit different. The Department of Corrections, together with others involved in law enforcement banded together to create a proposed bill to go through the legislature which would have provided notification of fire and police and other first responders, which, while it may have some public health and medical merit, the way it was written was not only medically irrational, but had all sorts of confidentiality and other problems you can well imagine. COMPUTER AIDED TRANSCRIPTION/keyword index eo Oo wa DH Wm 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 165 When we sat down to talk with those people, hard now how to describe the difference in culture. I don’t think I want to use the word in this setting that I used in private, but suffice it to say that they weren’t tracking with medical and public health folks and had deliberately avoided getting input not only with us, but from their newly hired part-time medical director at the State level, who coincidental and perhaps unknown to them, was probably one of the few physicians in Kansas really interested in AIDS issues. They particularly excluded him, but the AIDS issue was put under the guise of well, let’s talk about mononucleosis, which is where it got really irrational; hepatitis, which they ignored before. The point is there truly is a cultural gap that’s extremely wide and I’m not about to know how to bridge that, except that what I heard in the last two days suggests to me that at least as a state health official I have to go back and try a lot harder. MS. GREENSPAN: I really think the key is, and I think the states have been left to sort of do whatever they want, because of a real lack of a COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 166 federal policy, and I think that the main thrust of the federal policy has to be education, and it has to be that this is--and it has to be talked about as a very important weapon to fight AIDS. I think education and early treatment and voluntary testing, those three things are what is lacking in most prisons. They still, most prisons and jails still want to lean back on that mandatory testing, and once they’ve identified the population, then who cares about education? They don’t understand. “You know, universal precaution for them means you wear gloves when you’re around somebody HIV positive. In the state of Alabama they only have gloves in the HIV units. The only place where they used universal precautions and Alabama is an extreme case, but it’s that type of thinking. And there is a gap, yes, between the medical and between the correctional, but most unfortunately, what I found is that all too often the medical will defer. They will not take a strong stand and that’s why you really need an outside force and I don’t know if it’s just the Department of Health or if it’s involving some of . these AIDS advocacy groups that have grown up and COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 167 that are private organizations, but there has to be some people coming in from outside with a rational policy. DR. KONISBERG: You have to be, what I guess I learned about this also, you have to be vigilant or these things will slip through. In our case we found the State Medical Society to be an outside force that didn’t have to worry about any political problems, but they had gagged their own medical director, there was no question he was deliberately left out of it, but we would have appreciated more guidance I think, June, from the federal sources, because I felt almost defenseless and nearly panicked in trying to quickly come up with some guidance and we couldn’t find it any place, we had to really work on it from scratch. DR. OSBORNE: Jim Allen. COMMISSIONER J. ALLEN: Are you aware of any state in which the medical care or the medical program for the state correctional facility comes under the aegis of the Department of Health rather than the Department of Corrections, or whatever the analogous organizations are? MS. GREENSPAN: I’m not aware of any state COMPUTER AIDED TRANSCRIPTION/keyword index > Ww Nh wm 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 168 where that’s the case. There might be, but I don’t know. . COMMISSIONER J. ALLEN: There are states we've heard from today, as well as in the federal system, although there are public health officers assigned to the Department of Justice, it all comes under the corrections side, and I think what Dr. Konigsberg was just alluding to, saying we need to go back and have the state health departments try a little harder, seems to me we’ve got 50 state health departments as well as those of the trust territories that we need to begin working with, because I don’t see any possibility of the medical side being under the direction of the correctional side having the resources and the individual or the independent flexibility to put into place the kind of leadership and the kind of programs that are really needed. So somehow we've got to find a way of really empowering the state health departments to become involved in this and get the state legislatures to give them the authority to allow them to do something in this arena. MS. GREENSPAN: Just one other thing, _there’s just something to consider in dealing with COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 169 AIDS and HIV with prisoners. I think it’s generally understood in the outside world that people survive longer when they can actively participate in their care and their treatment, and this is what is being denied prisoners. It’s certainly being denied with all diseases, but with HIV disease, which is as we know, believed to be fatal in most cases, it certainly would be fiscally rewarding to the institution to have these prisoners live longer, I would think, although they don’t act that way, but if the prisoners, if there was a way that the prisoners could be involved in their care and treatment and their education, and I think that at least from the letters I’ve received, I’ve been literally blown away by their interest and their eloquence and their knowledge of HIV disease. I think that they need to be able to play that role, and that would really help their situation and it would perhaps even begin to turn around some of the miseducation and misinformation on the part of the corrections staff. DR. OSBORNE: Thank you very much. This is very helpful testimony. I will now ask the next panel to join us COMPUTER AIDED TRANSCRIPTION/keyword index me Ww N wm Oo Co ww DH 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 170 at the table, if you would. Bob Levine from Yale; Victoria Sharp from St. Clare’s; Ann Graham, FDA, and Billy Jones from Macro Systems, and if I could suggest that you testify seriatum and then once we’ve had a chance to hear from each of you, that will give us a chance to interact with the whole group. As I commented in the morning and some of you heard me, the Commission likes best to have a chance to read your testimony in detail and will if we have it written, but if you could sort of summarize that and make other points that you would like, but then leave as much time as possible for an opportunity to interact, that’s our preferred mode. Welcome. DR. LEVINE: Thank you. Thank very much. I’m Robert Levine. I hope that you have my written testimony. I plan to have my--what I say now is going to be quite brief. I want to address the concerns that prisoners have little or no access to randomized clinical trials, and also little or no access to investigational new drugs through such mechanisms as treatment IMD, parallel track and expanded access. COMPUTER AIDED TRANSCRIPTION/keyword index pe 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 171 The problem is not one of federal regulation. As you know, the Food and Drug Administration has no relevant regulations, and I'll explain why not soon. The regulations of the Department of Health and human services permit, and now I'll quote, "...research on practices, both innovative and accepted, which have the intent and reasonable probability of improving the health or well-being of the subject." Further, they explicitly approve assignment of prisoners to control groups which may not benefit individual subjects. If all one did was to read the federal regulations, one would almost certainly conclude that there’s no problem at all. But there is a problem. The problem has much more to do with the regulations as regards Phase 1 drug trials. The HHS regulations and the now inoperative FDA regulations make it so burdensome on the investigators and also on the sponsors to co Phase 1 drug trials, that those interested in working with the development of new drugs have simply abandoned the prison system. I’m not here to advocate doing Phase 1 drug trials on prisoners, but it’s because of that _ that the people from the pharmaceutical industry and COMPUTER AIDED TRANSCRIPTION/keyword index = HO ul 10 Li 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 172 others who have an interest in working with investigational drugs have just left the system. And they’ve left nobody behind who has the motivation to deal with investigational new drugs and all of the red tape involved in getting these things, filling out the forms and making them available to sick people. Why do the regulations discourage Phase 1 drug trials? Well, that’s what my written testimony is all about. My written testimony has mostly to do with a historical development of attitudes towards research involving prisoners, beginning in ancient Persia and ending in Bethesda, Maryland in 1976. I’m not going to--well, you must know I don’t have the time to involve you in that now, but I think it’s an interesting history and it’s relatively brief, given the time span. Briefly, here are the highlights of this history: When the National Commission met to write recommendations for regulations for research involving human subjects, and more specifically for research involving prisoners, they had no intent to preclude randomized clinical trials, no intent to preclude making investigational new drugs available COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 173 to prisoners. In fact, if you read the commentary under their various recommendations, they expressed great concern that some of their recommendations might in fact make it difficult for these prisoners to get access to these drugs which the Commission viewed as having therapeutic benefit, even fifteen years ago. The atmosphere in which they were working, though, was an almost homogenius anti-prisoner research sentiment around the world. This developed in the aftermath of the Nuremberg trials of the Nazi war criminals. After all, what they were all about is research involving prisoners. In addition, in the United States, there was a rising wave of popular opinion opposed to research involving prisoners. This was fanned by such things as Jessica Mitford's book, "Kind and Usual Punishment. " Shortly before the Commission was convened, there was the Kaimowitz case in Michigan, having to do with corrective or therapeutic psychosurgery on a prisoner, amygdalectomy, which was designed to cure compulsive aggression. This attracted a lot of attention in the newspapers, and finally while the Commission was deliberating its COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 i9 20 21 22 23 24 25 Proceedings 174 report on research involving prisoners, the store broke about the Atomic Energy Commission testing the effects of radiation on prisoners’ testicles without their awareness, in the prison system. All of these things taken together created a powerful negative attitude toward research involving prisoners. I also believe that the Commission had an implicit agenda which was not published with their reports. I think that they thought that they could bring about prison reform by setting up a number of conditions that had to be met in order to get authorization to proceed with Phase 1 drug testing. It had to do with single bed cells, access to various health facilities and so on. I think the Commission overestimated the investment of the drug industry in prison research. They thought if they set up these conditions then the drug industry would take the lead in reforming the prisons so that they could continue to do their research. They were wrong, they certainly did not anticipate what actually happened, and that is a massive exodus from the prison system of people from the pharmaceutical industry. As one prisoner put it COMPUTER AIDED TRANSCRIPTION/keyword index 10 li 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 175 so well, all they succeeded in doing, was getting the only people out of the prison system that gave a damn about the health and well-being of the prisoners. I suggest to you that no matter what policy change you come up with now, the fact is that most prisons don’t have doctors in the prisons that have a vested interest in drug development. They don’t have people in the prisons who are interested in doing randomized clinical trials. Parenthetically, I should say that there never were randomized clinical trials in prisons. That’s not the sort of research that was done there, but at least while there were the drug industry doctors in the prisons doing Phase 1 trials, there were people there who could also tend to the health needs of the prisoners. I‘ve already mentioned that there are no more doctors in the prison who had the motivation to deal with the bureaucracy and red tape involved in making investigational drugs available to prisoners. If I may, I want to close with a couple of historical footnotes. I went with the Commission on its site visit to the Jackson State Prison in Michigan. There we were greeted by a group of COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 176 mandatory lifers, who agreed to talk with us. The leader of the group, the spokesman for the group, began by saying, “Ladies and gentlemen, I hear you’re from the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. I want you to know that you’re in a place where death at random is a way of life. We’ve noticed that the only place that people don’t die here is in the research unit. Just what is it you think you're here to protect us from?" Subsequently, after the FDA published its highly restrictive proposed regulations, it was the prisoners in this very same prison, the Jackson State Prison, that initiated the lawsuit, Fante and the Upjohn Company, versus the prison system. FDA, rather than arguing the case, withdrew, or in their language, stayed indefinitely the effective date of the regulations. What the prisoners were complaining about, the central core of their argument, was that restrictive regulations on research involving prisoners was an unconstitutional deprivation of their liberties, that without due process, they were deprived of their right to be research subjects. The COMPUTER AIDED TRANSCRIPTION/keyword index oOo ND 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 177 FDA then reproposed regulations removing most of the objections or the passages from the earlier regs that the prisoners found objectionable, but what they did instead is inserted a compelling reason standard, while in the preamble to their first proposed regulations, they said they had not put ina compelling reason standard because it was too strong a standard, that they thought nobody would ever be able to meet it. This is what signals to the pharmaceutical and drug development community the intention of the FDA never to permit drug research in prisons. It’s the installation of this word, this standard, that earlier they had said was such a high standard that nobody would ever be able to meet it. That was back in 1981. There still are no regulations. Thank you very much. DR. OSBORNE: Thank you very much, Bob. It's a fascinating start to this discussion and a lot of information of which I wasn’t terribly familiar with. DR. SHARP: Good afternoon, my name is Victoria Sharp. I would like to begin today by COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 178 thanking the Commission for inviting me here. The need to review the treatment of prisoners suffering from AIDS is great and I sincerely hope the Commission will be able to assist those of us involved in direct care of inmates in improving the quality of medical treatment currently available to prisoners with AIDS. Throughout your travels around this country, you have seen some of the devastation this horrible epidemic has caused in our communities. You have heard the despair all too frequently present in the voices of those suffering from AIDS, and the frustration of so many health care providers who are attempting to fight this disease. I can only add my voice to theirs and tell you that I have known no greater challenge of the physician than that created by this epidemic. I have rarely seen such suffering nor felt so keenly the limits of medical science and of my own skills to stem this destruction of lives to soothe the pain and to cure the sickness of my patients. We have known this disease for ten years and we are still all too often reduced to guesswork in treating many of its effects. COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 179 In 1990, the fact remains that we have no tried and true treatment for a disease which the World Health Organization tells us has taken 800,000 lives and which will take too many more. In the absence of widely accepted and proven methods of treatment, the medical community has been forced to rely on a collection of drugs which are often still in the stage of experimentation and trial. While this is certainly an uncomfortable and frustrating position for the physician treating these infections, our discomfort cannot compare with the frustration, anxiety and very real pain of our patients. In this epidemic, as in no other, have we, the medical community, been forced to recognize that alleviation of suffering is our paramount objective, and that our patient is our partner in trying to achieve this goal. The situation as I have stated it thus far is true for all the patients I and my fellow physicians have treated. There is a population although suffering from this disease, however, who face an even greater battle to access what few drugs are available for the treatment of their illness. [I use the term "available" improperly, I fear, for with COMPUTER AIDED TRANSCRIPTION/keyword index Ww NH & nn in 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 180 prisoners with AIDS these drugs are more often than not unavailable. As medical director of the designated AIDS center at Albany and in my current position as medical director of the Spellman Center for HIV related disease here in New York, a large group of my patients are prisoners with AIDS from the New York State correctional system. As people suffering from this dread disease, they have few options for treatment. AS prisoners, they have even fewer. I offer a few examples. Mr. F, a patient, a 30 year old black male who we saw early in 1987 at Albany Medical Center, was diagnosed with cryptoccal meningitis. He developed a severe toxicity to Amphotericin B, an antifungal treatment used to treat cryptoccal meningitis. The only acceptable alternative, a drug called Fluconazole, was available at that time only through a clinical trial. Without treatment, cryptoccal meningitis is uniformly fatal. Another individual, Mr. R, a 25 year old Hispanic male we had followed at St. Clare’s New York, had CNV ritinitis, unresponsive to Ganciclovir. The only other therapy, Foscarnet, was available only through a clinical trial. Without treatment, CNV COMPUTER AIDED TRANSCRIPTION/keyword index = Ww N non Ww 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 181 retinitis will progress and cause blindness. Tne exclusion of prisoners from clinical trials is to some extent quite understandable when recalling the past history of clinical research in incarcerated populations. Such research was too often characterized by a callous disregard for the rights of prisoners to informed consent and freedom from coersion. We owe it to our patients not to forget the abuses of the past but in recalling them, strive to guarantee their rights, while facilitating their access to needed treatment, even if the treatment is in some form still experimental. The task of balancing the rights of a prisoner, our duty to protect them from discrimination and abuse and our desire to facilitate access equal to that of the non- incarcerated patient to medicine still on trial is an extremely difficult one, but we cannot allow the complexity of our task to overwhelm us and thereby allow the current conditions to exist. I would therefore like to offer the following suggestions: Prisoners as a population should not be the subjects of any particular trials solely on the COMPUTER AIDED TRANSCRIPTION/keyword index nm 75 6S OND eo ~~ HA 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 182 basis of their status as incarcerated persons. The fact that they are incarcerated, however, should not exclude them from trials which are being offered to the general population. Accessibility to drugs on clinical trials is limited, regardless of whether or not a person is incarcerated. The extraordinary requirements of administering these protocols create these limits and many institutions who are committed to treating the poor and underserved communities do not have the resources to meet these requirements. If the Commission makes any recommendations regarding the allotment of public funds, I strongly urge them to suggest that monies be used to assist institutions who are providing services to underserved populations, such as prisoners, to meet the criteria to conduct clinical trials. The extraordinary requirements of which I speak by their nature guarantee a higher quality of medical care, whether the participants are incarcerated or not. In this respect, there will always be issues of coersion, however subtle. I recommend that the Commission urge institutions who COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 183 plan to offer clinical trials to prisoners to consider the issues raised by the Prisoners Rights League; living conditions, amenities, absence from the correctional facility, use of placebos, consequences for parole status and possible discrimination against certain segments of the inmate population. Clinical trials involving the participation of inmates should be administered by major medical providers, preferably those who have a strong academic component which can assist in conducting quality monitoring and review activities. Clinical trials should not be administered by the health services department of Correctional facilities, unless under the auspices and direct supervision of a larger medical institution separate from the Department of Corrections. I would like to conclude by suggesting that our greatest responsibility is to create a system which delivers basic quality care to everyone, rich and poor, incarcerated or not. Regrettably, with a disease such as AIDS for which so few treatment options exist, experimental drugs are too often the basic, at times COMPUTER AIDED TRANSCRIPTION/keyword index oO iW & Ww WN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 184 the only treatment option we can offer. The obligation which I believe the state has to guarantee quality medical care to all is even greater when applied to those we imprison. They are our wards. In removing them from society for our protection, we assign ourselves as their protectors. In our performance of that duty, as in the care of those suffering from a horrible disease, will we be judged aS a society. Thank you. DR. OSBORNE: Thank you very much. MS. GRAHAM: Good afternoon, I’m Ann Graham from the Food and Drug Administration. I’d like to thank you for your invitation to appear before the Commission today. My remarks are specifically addressed to FDA regulations governing Clinical research involving prisoners and I’d like to state up front that FDA has currently no prohibitions against prisoners being enrolled in either therapeutic or non-therapeutic research protocols. I’d like to briefly pass over the regulatory history that Dr. Levine has quickly mentioned, it’s in my written testimony, and I believe you have a copy of it. COMPUTER AIDED TRANSCRIPTION/keyword index nr WwW ~J 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 185 There are, however, several other treatment options available to prisoners and other subjects of clinical trials. The investigational new drug regulations were finalized in 1987. These regulations include new provisions establishing the treatment IND. Under the treatment IND mechanism, certain investigational drugs for which there is promising evidence of effectiveness are made available for use in the treatment of patients who are suffering from life-threatening or serious diseases for which there is no known alternative effective treatment and that certainly includes AIDS, and is specifically mentioned in the treatment IND regulations. Six AIDS-related therapies, some of which have been approved and we have discussed earlier, have been granted treatment IND status to date. They are Trimetrexate, Gancyclovir, aerosolized Pentamidine, Erythropoietin, dideoxyinonsine (ddI) and pediatric AZT. A second new development is the parallel track or expanded access proposal that was recently published in the Federal Register of May 21 of this year for comment. This proposed policy statement ' COMPUTER AIDED TRANSCRIPTION/keyword index oO wo -~F DH WA 10 Ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 186 developed by the Public Health Service with Significant input from community advocates, industry reps, the research community and others, proposes a means to provide for wider, earlier distribution of potentially life saving investigational therapies to patients who have AIDS. It is proposed that these drugs will be offered under certain conditions to AIDS patients earlier in the drug development process to make them more widely available to people with AIDS and HIV related diseases, who have no alternatives and who cannot participate in controlled clinical trials. There are eight stipulated criteria for a drug to qualify for expanded access and they include, but are not limited to the sponsor’s willingness to make the drug available and to demonstrate the drug availability for both the expanded access and the ongoing clinical trials will not be jeopardized. A third development is the federal model policy for the protection of human subjects of research. This is in its final stages of getting cleared through seventeen federal agencies, after many years of protracted delays, and we are optimistic as I speak today that we will get this COMPUTER AIDED TRANSCRIPTION/keyword index on OO Tl Oe>lllUlUW CN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 187 finalized by the end of this fiscal year. We are aware, anecdotally, of several community based research programs that have tried to involve prisoners in treatment protocols using investigational drugs; California, I believe Rhode Island, and Louisiana. They have encountered logistic problems at the local level and at the state level, and we have given guidance to those groups, we have participated in community based research workshops. Those efforts are not going well, and are essentially defunct as we speak now. FDA does have some educational programs, and I'd like to explain that when we have investigational new drug applications at FDA, we are not allowed to disclose those. It’s proprietary information unless the sponsor discloses that information. The FDA, along with the National Institutes of Allergy and Infectious Diseases, CDC and the drug sponsors have coordinated their efforts in establishing an AIDS clinical trial information service, ACTIS. By calling 1-800-TRIALS-A, current information concerning clinical trials of commercial and federally sponsored research is available. Information of the location of the trial, COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 188 the responsible clinical investigator, protocol rationale, methodology and duration of the study are all available through ACTIS. We also publish the availability of treatment IND’s in the Journal of the American Medical Association, and I don’t know how widely that’s read by others outside the medical profession, but we do provide press releases and talk papers that are picked up by several press clip agencies and community based newsletters and other professional journals for inclusion in their own newsletters. In closing, I’d like to mention that we are aware of some efforts to enroll prisoners as subjects in clinical trials, but we are not aware of any clinical trials currently ongoing for the treatment of AIDS or HIV related diseases that involve prisoners either individually or as a group. Thank you. DR. OSBORNE: Thank you for that exceptionally clear and concise testimony, it’s very helpful. MR. JONES: Thank you. It’s a pleasure to have this second time around with the Commission, and I‘d like to just for the record to point out that COMPUTER AIDED TRANSCRIPTION/keyword index bo no oe Uw 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 189 while I'm here with the support and the blessings of my Current employer, Macro Systems, I’m actually, my comments are coming more from my position as board co-chair of the National Lawyers Guild’s AIDS network and the Washington Correctional Foundation. The last time I spoke before the Commission, I shared with you that I was affected by AIDS in many ways, and at that point I had stated that I had just recently discovered that I had a daughter that was infected by learning also that my grandson was impacted, and as of 5:30 this morning, my grandson died, and so I probably may sound a little disjointed and sort of an emotional wreck, but I made a commitment to be here because I wanted to make some statements and some contributions to this important issue of mine. One of my recommendations would be in the future that we besides support for slides, if we could have support for other ways of presenting material. I had really wanted very much to share a video that has been made by a community group of volunteers called the Boheka Group, and it’s a video called "A Will To Live." It’s the opposite, if you’ve ever heard of "A Bad Way To Die," and if I see COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 190 that movie one more time, I will puke. And I point that out, because one of my recommendations is that we do a better job of monitoring the quality of education presentations and materials that is being presented to persons who are incarcerated as well as correctional officers, and I'm often apalled by persons who gloat about education that’s happening, and I immediately say, but what’s the quality of that education? If you had been able to see this video, you would have seen persons who are ex-offenders, recovering addicts, former prostitutes, persons who had been involved in adverse behavior sharing with you some of their fear, trust--some of their fears about clinical trials and issues of HIV and AIDS, some of the trust factors that they have concern about, and some of their hope for the future. So I’m hoping, I will make a commitment to try to make this available to the Commission. It is currently still being developed. There is both a male and a female version. I bought with me the female version, but I will try to make both available to you. DR. OSBORNE: Thank you, we appreciate COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 191 that very much. MR. JONES: And again, I am privileged to have this opportunity to share my perspective regarding inmate access to clinical research trials, not because I am a physician or an academian of any university, but because I am an ex-offender who is committed to being a voice for my brothers and Sisters who are behind bars in coping with this disease we call AIDS and HIV disease, and having several times having served the time, I can assure you that sex among and between men, that sex among and between women and sex between men and women and sex between prison official and arrestees and detainees is very much the norm for some, an occasional threat or treat for others, and a source of coersion for others, and as a recovering addict, I can also say from experience that injection drug use is also a norm for many men, women and youth in prison jails and detention centers, and because of these factors, I find it ironic that some would advocate for clinical trials in prisons when we have yet to seriously address the needs for drug rehabilitation in prison, the need for job skills _ programs in prison, the need for developing coping COMPUTER AIDED TRANSCRIPTION/keyword index Oo ©O8 NSN DD ww 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 192 skills of parenting relationships and handling day-to-day stress and the need for educational programs which include AIDS education. Remembering the historical abuse and use of experimental drugs in prisons in years gone by and acknowledging that to the same extent that racial and ethnic minorities have been disproportionately impacted by a range of medical diseases and social problems and a lack of access to medical care, I believe that incarcerated persons in federal and state prisons and county and city detention centers and jails should not be considered for Phase 1 or Phase 2 of drug clinical trials, trials in which we are not sure of toxicity levels and trials in which placebos are used. However, I do recommend that incarcerated persons with AIDS and incarcerated persons who are HIV positive have access to Phase 3 of drug clinical trials. However, availability of drug clinical trials to persons in any institutionalized settings, whether they be prisons and jails or mental hospitals or residential drug treatment programs or any branch of the military services, should be monitored much closer than drug clinical trials offered to persons COMPUTER AIDED TRANSCRIPTION/keyword index nH iW ~J 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 193 who can truly make choices. Drug Clinical trials should take into consideration the type of facility, whether it’s federal, state, county or city; the length of stay of the individual; the quality of medical care and services available to those persons; the emotional and psycho-social support available to persons on the clinical trial. Follow-through and partnership relationships with medical and AIDS service providers upon release should be explored, and we should ask ourselves if the drug clinical trials are offered to women as well as men, to persons with history of addiction and without regard to the offense committed by the individual. And we should ask ourselves if the person is transferred or released, can that person continue in the clinical trial program, and if the drug proves effective can the arrestee continue medication without cost and will the participation in a drug clinical trial affect their options for release. We should also be exploring issues of testing, we should also be exploring the issues of education level and the ability of the person who is incarcerated to actually understand the potential COMPUTER AIDED TRANSCRIPTION/keyword index Proceedings impact of the drugs on their immune system. We should be talking about antiviral therapy and options, not just AZT, but ddI and should be looking down the road at other potential drugs that may become available at some time. We should recognize that what is written as policy versus what is implemented as a reality are often not in agreement, and we should recognize the weakness of medical facilities at prisons and detention centers in terms of low budget, in terms of being understaffed and in terms of often the medical personnel are not up to date on current medical protocol. Often the medical facilities are but mere first aid stations with subcontracts to city or county general hospitals. We need to recognize and to validate the role of volunteers from community based AIDS service organizations, and encourage them to continue to work with correctional facilities, and I think our testimony from an organization like ACE is an example of how that can work. We need to look at the reality of access to quality health care when individuals are released COMPUTER AIDED TRANSCRIPTION/keyword index m iW N 5) 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 195 from the correctional facility, and the options and choices of participants in medical intervention, medical care and medical follow- through. We should not be too shocked over the reality of segregation of housing of individuals when we recognize that in the penal system that women are segregated from men, that blacks, Hispanics, Asians, Native Americans and whites often are segregated, either intentionally by the system or segregate themselves. We should not be surprised when we recognize that gays are often placed in one unit and non-gays in another unit, that we have a forensic unit and a general population, we have protective custody, so we should not have such great shock that now we’re talking about AIDS units. There is a strong need and often a minimizing of the need for psycho-social support and I’d like to conclude my comments by pointing out that we really seriously need to give far more attention and respect to the psycho-social implications of individuals who are reaching out for help, reaching out for a will and a reason to survive, and often . you‘re talking about a population that if someone COMPUTER AIDED TRANSCRIPTION/keyword index = Ww hd ui 10 1i 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 196 wearing a white jacket or someone says, “I'm from the medical department and you should test or you should try this particular drug," they don’t often understand the implications of all of that and we need to take into account those issues. Thank you. DR. OSBORNE: Thank you very much and thank you for taking time with us in an especially difficult time in your life. Any questions? DR. DesJARLAIS: | This is I guess mostly for Bob and Ann, but with respect to doing serious research within a prison setting, research that is not just being done so that you can get a drug to somebody who needs the drug, but research with the idea that you would be publishing the results, I know one of the biggest difficulties I had to face when I thought about doing research in prison is how would I be able to publish the results of a study when I knew that there was no way I could guarantee that the subjects were being treated ethically and humanely with respect to basic medical care and with respect to particular AIDS issues, such as education, preventing reinfection, that it would be foolish to COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 197 send off an article to a medical journal saying these are the results of the drugs in a group of people that was not getting basic medical treatment for the complexity of the disease like HIV infection, that unless I was going to be able to find some way of guaranteeing that they really would be getting good health care, that there would be some protection against reinfection, that their psycho-social needs around counseling for the infection and such were going to be met, collecting the data is not going to lead to the research outcome of getting the stuff published. I would just like your comments on that. DR. LEVINE: Well, first, I can respond just out of what are the rules, and no medical journal requires that you be working in an ideal setting. All the medical journals and scientific journals will require of you is that you show that an IRB approved it. Now, IRB’s approve research that’s done in less than ideal settings all the time. But now, to take your question--I don’t want to just set your question aside, Don, with a technicality. If you look at quality research being done in prisons, in your own field, there was at COMPUTER AIDED TRANSCRIPTION/keyword index no iW & 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 198 Lexington, Kentucky very high quality work being done on the addictive potential of new analgesic drugs and they were doing the research on people who had been addicted to narcotics and who were at least not using narcotics at the time they were doing it. One of the first things that happened, even before there were regulations, when the National Commission was contemplating putting restrictions on research activities were there were drugs that were not designed to be of benefit to the patients, they just left, they moved to Baltimore City Hospital. They’re doing the same thing, but it’s not in the prison, so that they're not getting the sort of grief that they expected to receive while working in the prison system. Now, the bulk of the research that was done in prisons was not the sort where the ultimate target was publication, it was Phase 1 drug studies. The ultimate target there is to submit it to the FDA. There was always reason to question the validity of it, not just on ethical grounds. I mean, the presupposition of Phase 1 testing is that the only drug the people are taking is the drug you’re giving to them, but many people interviewing prisoners, even COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 199 in my own state in Connecticut, found they were taking all kinds of drugs and very often not taking the drugs that they were being asked to take as part of a study. They were sharing the drugs, they were getting together and pooling their urine, you know, so they find a little bit of drug in every urine sample. I’m not talking about ethics, I'm talking about pragmatic concerns. I must take exception to one statement that you made, if I will. The reason to be concerned about doing Phase 1 drug studies in prisons has nothing whatever to do with safety. There was that extensive study by Sarah Fenitiz and their conclusion back in the late ’'70's where they looked at two-thirds of a million prisoner days of Phase 1 drug exposure, and with the most relaxed criteria for identifying what they call a clinically significant event, they only found 28 events. There was no permanent disability. There were two highly questionable cases of temporary disability. The only prisoner who died, died in his sleep while taking a placebo, and this, mind you, is not a placebo controlled trial, this is Phase 1 trial where nobody COMPUTER AIDED TRANSCRIPTION/keyword index ya 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 200 is supposed to get any benefit. So when you talk about the bad history of research in prison, what we’re not talking about is drug research. If you calculate the dangers of getting injured in a Phase 1 drug study, I know I’m going on too long, but one insurance company that tried to set up no fault Workers’ Compensation insurance for non-prisoners in Phase 1 drug studies came out with insurance premiums that were exactly the same as those they paid for the secretaries working in the institution’s offices. MR. JONES: I would just like to make a quick response. My concern is not only in terms of what I still strongly feel could be abuse in terms of Phase 1 and Phase 2, but also particularly considered. Considering that there’s a disproportionate number of persons from communities of color who are incarcerated, and every single one of these racial ethnic groups have a history of having~-I mean, whether we talk about Tuskegee Syphilis study or in Puerto Rico with the birth control pill or what have you, the combined history _ of that gives us a collective reason as a community COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 201 of people to be concerned, and to be reserved, so my concern is, if we do not--when you’re talking about a community or a population in which coersion is often part of the method that is used to get people to participate, and if the individual says no, that you are punished, I mean, having been incarcerated, I know if someone is supposed to take medication and they say, "No, I don’t want the medication," then you are punished, sometimes subtle, sometimes blatant. So that’s my concern. Now, I could probably be talked out of that, but it would have to work through, for me would be the trust factor, and what I said in my testimony is that if we are going to do clinical trials, I think there’s a great deal more monitoring that would have to be done with those than we would do with the general population. DR. DesSJARLAIS: I just want to make one point about different types of research. Phase 1 clinical trials, trying out psychoactive drugs for a short pericd of time can relatively easily be done in prisons, because you’re basically working with otherwise healthy people. When you’re dealing with _ Phase 3 clinical trials or trying to really do COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 202 research with people who have moderate to advanced stage HIV infection, then you have to really deal with all those other questions of are they getting adequate medical care, are they getting adequate psycho-social care and that’s where I see you would have big problems convincing a reviewer that your research should be published, because you were providing ethical treatment to the research subjects and I know many people who would say regardless of the scientific findings, if I knew subjects were not receiving basic, compassionate, adequate medical care, the review would be quite negative. DR. OSBORNE: I have a problem here. I've already reduced the length of our break to five minutes, in order to try and get through all of the people who we want to hear from today and who have taken the trouble to come, so I do have two what I hope to be very, very brief questions from Harlon and Jim Allen. If they’re comments, don’t make it. If they’re questions, brief. COMMISSIONER DALTON: Bob Levine, you were just spared by that, so I want to speak to Dr. Sharp and Mr. Jones. I’11 pretend this is a question. COMPUTER AIDED TRANSCRIPTION/keyword index ~~ oO Mm 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 203 I want to thank you both for the care that you took in structuring your comments. There is a very difficult balance, it seems to me, between the need to include inmates in clinical trials with respect to HIV, because it’s a form of treatment, frankly, and at the same time the very real problem of not only historical problem of abuses occurring and I thought you both were wonderfully sensitive. I wanted to ask Dr. Sharp just what you meant in your testimony by saying we should consider the issues raised by the Prisoners Rights League, or at least give us a reference to where that can be detailed somewhat more fully? DR. SHARP: Those were included in a panel discussion which in fact has been published, run by Nancy Dubler, and Dr. Levine was present two years ago in 1988 in New York. I can make sure that you have a copy of it. It addressed specifically the issues of clinical trials in prisoners, and prisoners--Legal Services was concerned that in fact certain issues that could result in coersion, were in fact looked at and dealt with, but I will make sure that you get a copy of that. I just wanted to make two comments: COMPUTER AIDED TRANSCRIPTION/keyword index 11 On iW & Ww iho 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 204 Number one, I feel very strongly that clinical trials should not be designed solely for prisoners. COMMISSIONER DALTON: You said that in your testimony, I appreciate that. DR. SHARP: I think that really needs to be emphasized, and the other issue is that about guaranteeing health care or appropriate health care, I think we know that, we’ve learned in the course of this epidemic that clinical trials do in fact provide better health care to individuals, that there is a plus for being admitted to a clinical trial, and that if you enroll a community patient in New York City in a clinical trial, you in fact take over their health care, so the same goes with prisoners. We did that both at Albany and St. Clare’s, we had inmates involved in clinical trials, our patients, and I don’t know that I could say that living in the South Bronx today is any better supportive atmosphere than in certain of our prisons. COMMISSIONER DALTON: I had a question, but basically I would like for you two to get together and see what between the two of you come up with and I would like to see the product and she’1ll pay for it. COMPUTER AIDED TRANSCRIPTION/keyword index oO Oo 4 OH YH 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 205 DR. OSBORNE: Very briefly, Jim, because we are very late. COMMISSIONER J. ALLEN: Question for Dr. Sharp and Ms. Graham. With regard to a patient like Mr. F, who needs the Fluconozale for treatment of cryptoccal meningitis, shouldn’t a drug like that be available in a circumstance like this under compassionate release? Now, of all the physicians who we’ve heard testimony from in the last day and a half, I have not heard one of them talk about compassionate release use of investigational drugs. DR. OSBORNE: You better talk about compassionate use, rather than compassionate release. Those are different matters going on. COMMISSIONER J. ALLEN: Compassionate use of investigational therapies. It seems to me that particularly for a drug like Fluconozale is really the best way to go rather than doing a clinical trial. DR. SHARP: Well, as a matter of fact, in that particular instance, we were able to get Fluconozale through compassionate use. But I think what you need to understand is that despite the fact COMPUTER AIDED TRANSCRIPTION/keyword index Ww WN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 206 that the FDA does not prohibit clinical trials in inmate populations with certain restrictions, that the word’ out there in the streets and in the medical centers is that in fact prisoners are excluded from clinical trials, so when I tried to convince my bosses at Albany Med that this individual should be put on Fluconozale for a compassionate--it took a lot of doing, so I think that the purpose here is to sort of get the word out, and ultimately you would like to be able not to always have to rely on compassionate use. There are other indications, again, with this individual who has since, he just recently died, he was getting his Bachelor’s degree in the prison system, and in addition to defending the toxicity to Amphotericin, as you know Amphotericin is an intravenous drug requiring an indwelling catheter. When he had the indwelling catheter, he was ina particular risk and therefore was not able to go out in general population, although physically he was completely able to, but you can imagine pulling the catheter out, so he was proscribed from attending his classes until, fortunately for him, he developed the toxicity to Amphotericin. and we were able to give him COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 207 compassionate use Fluconozale. He took the catheter out, went and got his Bachelor's degree in prison. DR. OSBORNE: Thank you very much for your important testimony, it’s really very provocative. I would ask the next panel to join us to talk about HIV AIDS education. While they are joining us, I think I'll beg the question, Karen, there’s a public comment interval scheduled for 5:00. Could I ask that anyone who desires to make three minutes of public comment per person contact Karen Porter and let her know so we will be able to anticipate those who would like to speak. - Welcome, and thank you for your patience. As you know, we’re running a little late, but we’re eager to receive your comments. MR. MOORE: Good afternoon, I'll try to be very brief. A lot of things that I wanted to say have already been touched on. I’d like to start off by just reading through a set of recommendations and then I'll touch on some of the points that are in my testimony. Health education and risk reduction programs taught by skilled health educators should be COMPUTER AIDED TRANSCRIPTION/keyword index 12 oo ~ HD WN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 208 accessible to all residents of federal, state and local prisons and jails to make sure they have the information and resources to protect their health. AIDS education programs developed specifically for correctional social service and medical staff should be mandatory and regularly | updated in all systems. Correctional systems must be encouraged to work cooperatively with community based AIDS service organizations in providing support services and counseling to bridge the gap between jails and the community and provide followup services to inmates as they return to the community. Counseling and HIV antibody testing for all inmates should be available ona voluntary and confidential basis. Comprehensive compassional medical management must be provided for all inmates, including the range of HIV positive residents from asymptomatic to critically ill. Custody and parole decisions must not be made on the basis of HIV antibody status. Prisons must establish clear policies to guard against AIDS-related discrimination towards COMPUTER AIDED TRANSCRIPTION/keyword index wm &» Ww WN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 209 staff and residents. HIV positive residents must have full access to educational, vocational, drug treatment and all other institutional services. Condom distribution should be a part of an overall health promotion and AIDS prevention effort in all correctional systems. Correctional administrators must develop policies that assure universal precautions are integrated into the institutional procedures to limit the health risk to staff and residents and. Lastly, medical records; it is important all residents, including those infected with HIV, should be managed in a fashion that recognizes and preserves their confidentiality. Prisons and jails present special challenges and a special set of opportunities to those of us who are committed to controlling the spread of HIV infection and meeting the service needs of residents with HIV infection. The Philadelphia Department of Health through its AIDS activities coordinating office and the Philadelphia prison system over the past several years have been working together to develop appropriate and compassionate COMPUTER AIDED TRANSCRIPTION/keyword index oOo oOo wa DD WT 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 210 responses in the issues and problems raised by the AIDS epidemic. Clear, practical policies that address the needs and rights of both inmates and correctional staff are central to this effort. Balanced policies must view inmates, with or without known medical problems, as individuals with the right to health care, confidentiality and information about their health and health care. Early on in the epidemic, many of us naively acted on the assumption that if we just informed people about the danger, they would change their behavior. For some that may have been enough. For too many, the message needs to be repeated, amplified and expanded. Education must help people begin a process, the end point of which is long-term behavioral change. Risk reduction can only occur when education goes beyond sharing information and helps find ways to help people internalize the need for change. We can no longer let the widespread sentiment that AIDS is someone else’s disease go unchallenged. Workshops must help individuals develop personal skills to implement responsibile COMPUTER AIDED TRANSCRIPTION/keyword index nH WT 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 211 health maintaining lifestyles. This process can only be effective if its responds to the cultural and social norms of the target audience. Prisons and jails are a particularly usually invisible subset of American society. The scale of American corrections and its peculiar demographics combine to create opportunities to reach large numbers of high risk individuals who are unlikely to participate in health education forums in the community. The Sentencing Project in its 1990 report points out the numbing fact that 23 percent of black men between the age of 20 and 29 are under the control of criminal justice systems. This compares to 6.2 percent for white men, 10.4 percent for Hispanic men and 2.71 percent and 1.8 respectively for black, white and Hispanic women of the same age. The scale is massive. According to the Bureau of Justice Statistics, there were 9.7 million admissions to local jails in the past twelve months--in the twelve months ending in June 30, 1988. We must also note that in the same period, 9.6 million men and women were returned to our communities. I think it’s important to note that a lot COMPUTER AIDED TRANSCRIPTION/keyword index 13 —~I OO UN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 212 of our focus today has been on the role of state and federal systems, and in terms of education, one of the most important targets must be that revolving door that sees tremendous numbers of people who will be moving directly back into the community. American prisons and jails hold more than a million men and women at any given point. Overwhelmingly, prisons are filled with minority and poor people and some of the points here I'll skip over, but I would like to notes that education services must focus on the special needs of the demographic group who ends up in prison, and we must also note that women have Special needs, and the programs must be developed specifically for them. We can no longer take literature and programs that are designed for a general community audience and assume that that material will be effective in a correctional setting. Painting the face on a brochure black does not create a minority focus. AIDS education must be more than an explanation of modes of transmission and a "just say no"-styled admonishment to abstain. We must not only deliver facts, but we must also be sure that the message is being heard. COMPUTER AIDED TRANSCRIPTION/keyword index wm & Ww N 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 213 Our mission has at it’s core the goal of changing behavior and fostering. responsible decision making. The internalization of the link between behavior and health is central to this effort. No AIDS education program can be successful in the long run if it does not foster this understanding. It must also present specific skill building workshops that underscore the health and behavior link and give people tangible tools and strategies that can be drawn on in the real world as they make attempts to implement risk reduction. Staff education must also respond to the needs and concerns of all prison employees. Training must be customized to the job needs of each staff group and regularly updated. Effective staff education is the most essential step in allowing calm . and compassionate implementation of policies without undue fears and resistance that accompany a lack of information. The importance of staff education is underscored by virtually every major group from the ACA to the ABC to, you name it, there seems to be an overall clear consensus that we must provide education to staff as the beginning point to allow COMPUTER AIDED TRANSCRIPTION/keyword index m* «J 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 214 systems to begin to change their nature. DR. OSBORNE: Let me ask if you could sort of pick up the high spots in the remainder of your testimony, because we'll certainly be looking at it closely as well. | MR. MOORE: The challenge of prisons and AIDS is enormous and it is clear that the consequence of not meeting the challenge is unacceptable. There are currently a broad range of responses, a patchwork of programs across the nation responding to the particular needs and limitations of its setting. The local response must continue, but national guidelines and support must be greatly expanded. I'll skip ahead to save time. Let me note that prisons by their nature are slow to change. Health care and health education are not their primary focus. We're a system that is being overwhelmed with sheer numbers, systems that were designed with health care only as an afterthought, and now are typically seeing five to ten percent of their population being in a situation where they need extensive, ongoing medical management and if we’re to respond not only to people with AIDS, COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22. 23 24 25 Proceedings 215 but to the asymptomatic population, we're looking at unprecedented challenges to correctional medical systems. Currently in Philadelphia about 5 percent of our residents are HIV positive. As I said, the challenge to the medical service is unprecedented and it is also clear that we must see this as a mandate to educators, since that is the only known factor that can stem the tide of this controllable epidemic. Thank you. DR. OSBORNE: Thank you very much, we appreciate it and we’ll read--the Commission is quite good about reading the testimony that we're given in addition, so I’m sorry to have to move things along, but I do appreciate it. MS. LETTS: Hi, my name is Sharon A Letts, I’ve been providing AIDS education in the institutions in Delaware since 1987. Delaware like Rhode Island is a combined jail and prison system, so all of our institutions have both sentenced and pretrial prisoners in there. We have one female institution that holds 170 women. Back in 1985, we had our first prisoner die of AIDS. His name was Ross Black. He hada COMPUTER AIDED TRANSCRIPTION/keyword index 14 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 216 reported 38 sexual contacts while in the institution. At that point, that is when we all knew that the fear was starting, and it hit big time in our institutions, because there was no education up to that point and no one really knew what was going on. Since that point, nevertheless, in the six years that I’ve been working in the institutions, I’ve been working with men and women who have been watching their friends and family die and have had lots of trouble getting access to information for themselves and friends and families, which is why we started to do this, because this isn’t really in our realm. I started doing AIDS classes, as I said, in 1987, and I would speak before the class and I would do what we call the basic AIDS 101 and one of the things that I realized was that I could give them all the facts and I could give them all the information they needed to do what they needed to do, but I couldn’t tell them about what their lifestyle was like, I couldn’t say to them, "These are the risky things that you’re doing," because I had no idea. I came from the suburbs, and that is where--yes, I came from the suburbs my mother kept me in the closet until I was 18 and then I went to COMPUTER AIDED TRANSCRIPTION/keyword index ao Ww & Ww NHN Oo wo ~J 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 217 college, so what happened is I decided I was not the appropriate person who should do education, it should be the prisoners themselves. i went to the Key Program, which is a hardcore therapeutic community for heroin and cocaine addicts, and started to educate three of the men there to provide the education in the institution. And I thought when I walked in to start teaching them was I was going to be the teacher and they would be the student, and what happened was I ended up being the student learning about things, about their lifestyles and what they went through. When they started doing the classes, I also noticed a different thing between what happened when I did education and when they did it. When I did classes they were classes. When they did education, they were dialogues, they talked to them. A lot of those people in those classes were people they knew on the street and run with, people they housed with in the institutions, and they knew what those people were doing, too, so they couldn't say, "No, no, not me,” because they said, "Yes, yes, you, I saw you," okay? So it was a lot more like that. Where I talked about condoms and clean COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 218 works, they talked about cookers and condoms and boosting and trading sex for the pipe and all sorts of stuff that I never heard about before, and they had that dialogue that went back and forth. The other thing that I think is really amazing for the men and women who were involved in our education, and we do do it, right now we have four institutions we’re planning on doing it in, we’re in three and we’re working on the fourth, is the overwhelming sense of accomplishment and dignity that we give our educators, because for the first time in their lives they’re doing something which they never planned on doing, which is doing public speaking and an education class, so there’s a great sense of dignity of doing that and also where a lot of them recognized for a lot of their lives that they took from the community, they were giving back. The other part was that they know that they are helping people, they know that they are saving lives, and they care about doing that, so when they go in the classes and say to them, "I care about you, we ran the streets together, I housed with you, I need you to do this because you’re going to die if you don’t do that," that really comes across in a way COMPUTER AIDED TRANSCRIPTION/keyword index oo ni nm wu 10 1i 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 219 that I could never get it to come across, because I’m from the outside and have no idea what’s going on with them. Women do have special needs. We have four women educators in the women’s prison and they almost do one on one education classes, which is really nice, but they focus a lot more on empowerment. Women have a real problem with being able to say to their male partners, "I want you to use a condom." That’s really new for them. They’re not used to making those kinds of demands, and standing by them, so a lot of what we do in those classes is talk about empowerment, being assertive, negotiating for safer sex, also talk about the issues that surround pregnancy and also the delivering an HIV positive baby. Ten to twelve percent of the women in the institutions have AIDS. We have a very high infection rate among the women in Delaware who have infection from AIDS. I’m not sure why it’s different in other states. The other thing that was, as I stated before that I think is real important is that when you get people who are from the community from which COMPUTER AIDED TRANSCRIPTION/keyword index nn UW & 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 220 the people who were there come from, is that there are risk behaviors that I wouldn’t necessarily touch on, because I don’t know that they participate in them, that these people can touch on, the prisoners can talk to them about that. One of the major ones that we had with our education program, especially since it's conducted by inmates, is that our correctional staff is not as well educated as our prisoners are, so they have a tendency to go in and refute what the educators, inmate educators have just told the classes, and that’s a huge problem and the need for correctional staff to be educated I can’t say enough for. One other thing I want to mention is that we also have another program through the State of Delaware where we have one on one AIDS education counseling for persons who are sentenced to a year or more in prison. That educator is here with me today, Lisa Bojanski. She sees every inmate upon admission and prior to release. She also does regular counseling sessions with HIV infected prisoners. Thank you. DR. OSBORNE: Thank you very much. MR. HARRISON: Thank you. COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 221 Let me start by briefly telling you a bit about the National Commission on Correctional Health Care and the work we do. Our purpose is to promote provision of adequate medical care in correctional institutions and confinement facilities. Since 1985, the National Commission on Correctional Health Care, I usually refer to us as the National Commission, but you are the National Commission as well, so I‘ll either say NCCHC or if I don’t catch myself, use our whole name. We've been an independent organization, we have developed widely recognized standards for medical care in jails, prisons and juvenile confinement facilities with which many facilities voluntarily comply. I might add that it is not uncommon, there are a number that do comply under court order. In addition, we provide technical assistance and training to health care providers, we conduct research, put on national and regional conferences, publish a quarterly newspaper as well as a scientific journal of prison and jail health. Our organization operates with the support of 31 national professional associations who appoint a member to our board of directors. These COMPUTER AIDED TRANSCRIPTION/keyword index = an 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 222 organizations include, to name but a few, the American Medical Association, the American Bar Association, American Public Health Association, the National Sheriffs’ Association and the Society for Adolescent Medicine. We first addressed the issue of AIDS in jails and prisons at a national conference we held in 1981. Since that time, it’s been a major topic of discussion at our conferences as well as our publications. I was asked to speak today about education programs for incarcerated youth, which is an area we get involved in. As some of you may know, there are both short and long-term juvenile confinement facilities. There are some 600,000 admissions to juvenile public facilities annually. Well over 50,000 juveniles are locked up on any given day. The typical delinquent admitted to a facility is male and over the age of 15 and ethnicity varies widely from area to area, but the majority of juveniles who are in custody are white. While the population of juveniles in the United States as a whole has been going down, the population of juveniles who are locked up has been COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 223 increasing for the past several years. The increase is widely believed to be attributed to the increase of drug use, and the sentencing by the juvenile courts for drug offenses. In 1989 NCCHC, with funding from the Centers for Disease Control, sent a questionnaire to 1400 public and private juvenile confinement facilities in the U.S. to learn more about their AIDS education activities and over one-third of the facilities responded. The average daily population of youth in these facilities was 51 and the average length of stay was 105 days. These facilities reported 14 confirmed AIDS cases and two AIDS-related deaths. 42 percent provided some form of HIV testing, in most cases when it was clinically indicated or requested by the juvenile. We have found that there’s a great need for AIDS education programs in juvenile confinement facilities. Many children in custody are known to have engaged in HIV risky behaviors such as intravenous drug use, sharing of needles, multiple sexual partners and prostitution and the sharing of needles for tatooing and ear piercing, which is often part of a gang-related activity. COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 224 Most of these children are from dysfunctional families. It is common that they no longer live at home and are not in school. As a result, these children have no formal access to education other than what they will receive while in custody. I don’t know if you know about that there are some kids who are locked up as status offenders. A status offense is something that would not be a crime if committed by an, adult but as a juvenile, for truancy, for example, you can be incarcerated. The problem is how to take advantage of the time that children are locked up by providing them with important health education information in trying to effect behavior change. They are not particularly receptive. These kids have heard of AIDS, but many have fears and misconceptions and generally suffer from the invincibility that all teenagers feel. A number of them also feel despair and hatred and profess no particular interest in protecting themselves or others. Most facilities do provide some sort of health education. They do this either through a curriculum brought in by the local school district or COMPUTER AIDED TRANSCRIPTION/keyword index no iw -& WwW WN ~3 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 225 they develop one on their own. In many cases the local Health Department is invited into the facilities and plans to add to these programs with their own. Clearly a child in custody for several months presents a perfect opportunity to provide HIV education anc possibly the only formal health education the child will ever get, but local school programs and health departments often are not able to communicate effectively with this population. The issues of cultural sensitivity, clear language and open dialogue are even more important for this population than the teenage population in the whole, but they’re not typically found in the public school programs used in detention centers and the child will be in custody for only a few weeks before being put on the street presents additional challenges to an overburdened facility. Our office at the National Commission on Correctional Health Care help juvenile facilities in this area. We provide seminars for prevention staff; these are teachers, counselors, health care providers and administrators. The seminars are intense, three _ day long activities, provided free of charge. COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 226 Special curricula is developed for both short and long-term facility and these curricula are asked--we get requests from the State Department of Education to provide this curricula to them, because they get also involved, as I was saying, in health education programs in the juvenile facilities. We also do a training of trainers program to--the word "empower" has been used several times today, to empower local staffs of the facilities to train others on their staff throughout the region. In conclusion, let me say that providing health education to incarcerated juveniles is vital. Because of their behaviors these children are some of the most likely in the country to spread the virus. An opportunity exists while these children are confined and, we must use this opportunity to provide education and try to change behaviors. Additional funding would help, but so would the easing of restrictions that school officials feel on the language that may be used to in presenting this information to hi risk youth. To effectively communicate with a street kid, we must speak that child’s language. We must better train our counselors and health educators in the facts of COMPUTER AIDED TRANSCRIPTION/keyword index “+ A WW & Ww 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 227 HIV infection and how to better educate and effect behavior change in children that are in custody. I’ve included in here a policy statement that our office has developed on HIV education for incarcerated youth. We also have policies on management of HIV patients and AIDS patients in adult correctional facilities. I’d like to emphasize what I hear from our counselors who do--who are responsible for talking with kids. They are handicapped by the public concern and concern that’s been echoed by some members of Congress about what messages we’re going to give when we talk about counseling against HIV infection, and I can be euphamistic or I can be blunt, but it’s strongly felt that street language has to be used to talk effectively with street kids, and whoever the person is we’re going to educate, be they adult or juvenile, I think we need to speak their language and find out what that is, and that’s the freedom that our educators seek. DR. OSBORNE: Thank you very much. Mr. Hernandez? MR. HERNANDEZ: Yes, good afternoon, I realize that everybody is tired, it’s near the break, COMPUTER AIDED TRANSCRIPTION/keyword index 17 nD iW & ww 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 228 I promise I will not bore you, I’1ll try to entertain you as much as I can. I'll get to some of the points I’m doing in San Antonio. Just to give you an idea of how dedicated I am, and please, I broke my arm at the Bear County Jail, and I’ve been working non-stop ever since. They took my cast off, it’s a real pain to be acting like I’m falling on one side, but I’m sorry, so I promise I’1ll go real fast. I want to thank you all very much, it’s an honor with I, "gracias por la invitacion" to let me be part of this panel and to share with you some of the things that are happening in San Antonio. I know that most of you all heard so many things about bilingual education, what is it, well, I’m here to tell you exactly what is bilingual education. A lot of people think bilingual education is just going to school to master the language. You got to know the people, you got to know the fears, you got to want to care. There’s a lot of people that get into this business and say, "I want to be an educator." Well, it takes more than that. You have to have a lot of dedication. You have to suffer with those people to know what really COMPUTER AIDED TRANSCRIPTION/keyword index 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 229 their needs are all about. I’m here to share with you what my expectations are with my staff. I’m very, very demanding when it comes to that, because I even do myself education in the jails. Let me tell you one thing. A lot of people think that Mexicanos, Texanos and Chicanos are the same. We're not the same. Texanos are people born and educated in Texas. The majority of these people speak English only, a few might speak Spanish. Chicanos are more authentic than Texanos, they speak English and slang Spanish. Now, Mexicanos, like me, we speak Spanish, okay? So one of the reasons why I’m saying this is because we have to be very careful when we go into the bilingual education. For example, there are words which are double meaning, for example, the word "cojer." It means "to take." But in slang, and pardon my French, it means to screw. So that’s why we have to be very careful when we go out and talk to the people in the jail, that we know how to communicate with them and exactly how to relate this information so we will not offend anybody COMPUTER AIDED TRANSCRIPTION/keyword index 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 230 and at the same time they will be receptive to us. It’s very important that we get accepted when we go into a jail scenario. I’m sure everybody here knows that. One of the things I've learned, I heard one person, I will not mention names, that I can remember, he told me, "Well, when I go to the jail and I do a jail presentation, I wear a suit and tie." Well, I got a news for you, we don’t do that. In our agency we have to go in there, and we become an inmate. The minute we walk into that Bear County facility you become an inmate, and we have been treated, believe me, I have been treated like an inmate ‘sometimes. One time one guard told me, “What are you doing here, you’re supposed to be in cell C?" I said, "No, no, you don’t understand, I’m here to do education." He said, “Let me see your badge." I show him my badge, he says, "Sir, I’m sorry." SO automatically, once you're in there you become a prisoner. So that gives me an idea what it’s like to be treated. I want to be treated like they are so I can come outside and I can help them and better deliver what they need. COMPUTER AIDED TRANSCRIPTION/keyword index im & WwW WN ao i 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 231 The next thing I want to say is that we start education with the prisoners, right? Well, we need to start doing followup with their families, because these prisoners are going to be coming out and they’re going to be coming home and what's going to happen to their wives, girlfriends, or boyfriends or whatever? They’re not going to know anything about this, they need to be informed of this information, so we're moving into that area also, Slowly but gradually into the family, because a lot of times they're not too receptive about it, but we are working with the people in the jail. One thing I want to share with you, these things are all happening to me on a daily basis. Before you go into the jails, you have to be aware of what materiels you’re going to be presenting. Everything has to be screened before you go into that place. I have been reprimanded already because I carry things that are not supposed to be taken in a jail. The next thing that I wanted to say is that when you start doing sexual education, when you get down to the explicit part, we have a way of doing COMPUTER AIDED TRANSCRIPTION/keyword index > Ww NN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 232 it. We have a male and female. The female does the female, so they get down to the basics. We have the males, they do the same thing, too. But a word of caution when you do that, you have to be very careful how explicit you get, because these guys and these girls will do anything to put you on the spot. An example, one time I went to do the jail presentation for the first time and somebody threw and undergarment at my face to see if I got intimidated, but that didn’t work. So that sort of thing. So you got to be prepared for scenarios that can happen around you. And I always tell my staff, staff I say, "You have to be receptive and you got to be open to anything, because anything goes in that jail. Once you walk in, anything can go, so if you can’t handle this particular scenario, then I'm sorry, you’re in the wrong place." Now, I’m coming from a different perspective in this particular panel, I’m coming from a reality perspective, how the people really are in there, because that’s what I’ve been living, and I’m sorry, I’m not trying to be a showcase or being anything, I’m trying to be realistic, what’s been happening to me. COMPUTER AIDED TRANSCRIPTION/keyword index 18 m> Ww NK ao sn HN OW 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 233 The next thing I want to say is that we never share any information, any personal information. Sometimes we can’t help it, but getting personal with the people, we care, we want to help them out as much as we can, then they start asking favors from you, and it’s important we do not get too intimate and personal, because we don’t know what we're dealing again. And my time is up and I would like to conclude by saying that the number one key in education in the Hispanic family and anywhere is that you have to respect people and if you respect them, you'll be surprised how receptive and how well received you will be. Thank you very much for this opportunity and I hope I didn’t go 150 miles an hour, but that’s life. DR. OSBORNE: You did it wonderfully. I particularly like your last point. That’s a very important point. MR. HERNANDEZ: Thank you. DR. OSBORNE: I think we have a few minutes for questions before we take our abbreviated break. COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 234 MS. DIAZ: I just have one. I really wanted to ask Billy Jones this question, maybe he can still answer it from the back because it deals with three of your presentations, being a health educator by training. Do you feel that most of the materials out there now, we've got such a tremendous amount of materials for AIDS education, are suitable or at least adaptable? I’m not talking about painting black faces on pamphlets, but at least adaptable to be used for the use of prison education? Ox like what you have there, do people in prisons need to see themselves in the video and illustrations and materials in order to get the HIV message? MR. JONES: For the most part, the materials that I’ve seen don’t make any sense at all in the correctional facilities. The dilemma we have, again, for the most part, is a budget situation. For example, Department of Corrections will often subcontract with some outside agency or will try to adapt materials that have been developed for another very particular population. They often still censor, so if the COMPUTER AIDED TRANSCRIPTION/keyword index m is NI ui 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 235 material was designed for the gay community, the gay male community, even though they want you to target the gay tier or the gay unit, they still don’t want you showing little pee-pee’s and pubic hairs, and stuff like that, you can’t do that. so the thing is that there are several creative ways to do it. One is having the incarcerated population to design materials themselves, and they can design--and this has been done in a number of areas where they design very creative posters and brochures. It needs to talk to what's going on in the correctional facilities, in terms of their concern in that level, as well as what happened before they got there, as well as what may happen once they leave. There are certain situations that are just different. For example, the issue of tatooing is much more of an issue in any--among youth who are detained, it’s a bonding process; the issue around drug injection is different and the issues around sexuality is different. I encourage men, for example, to talk about masturbation much more, and I say, that’s a perfect setting to talk about getting used to the COMPUTER AIDED TRANSCRIPTION/keyword index & Wi N no wu 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 236 feel of condoms while you’re masturbating, and you could certainly talk about it on that particular level. So the answer to your question is no, for the most part. I’ve seen some, but for the most part, no. COMMISSIONER DIAZ: I just wanted to follow that up, I know the Board Chair from Maced is here, Jessie Sanchez, and you're a special adviser to CDC, I hope you carry that message to the big CDC. Is that why you developed a special brochure for people in prison, Jessie? MR. SANCHEZ: ‘Yes, it is. We developed a special brochure for two reasons, because, one--we developed a special pamphlet because we find that in our particular situation, about 57 percent of the population in our area is Hispanic, many of them speak no English, many of them even if they do speak English are unable to read or write, so we had to develop materials which are very, very basic, simple English, very, very basic simple Spanish, and our materials have to be both in English and in Spanish, so we have a need for both bilingual education and we have to use a lot of pictures, and so we think that COMPUTER AIDED TRANSCRIPTION/keyword index 19 mm Ww KO 7 OH th 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 237 humor is one of the best ways to educate, so what we tried to do is sum up with little cartoons which illustrate the point that’s being made on the page, and so that’s why we developed the special brochure. MS. DIAZ: Thank you. MR. HERNANDEZ: I would like to say I have a sample packet of the materials, and I’m sure some of the people will be working with Hispanic people, but this is the only one I got, you’re free to have it, but I also have business cards that I could share. If you write me, we'll send you a sample packet on the house. MS. LETTS: I also want to say we developed our own brochures, it’s not for a special population, but it’s done with the development of a Special ed program, one for low literacy, basically the facts on this one, what AIDS is and how it’s transmitted, and this one is our prevention one which we've gotten a fair amount of flack over, but this is the one they keep, which I’m real pleased to hear, so I have lots of copies if you would like to have one. DR. OSBORNE: Thank you very much. Scott Allen then Diane Ahrens. COMMISSIONER S. ALLEN: One question for COMPUTER AIDED TRANSCRIPTION/keyword index ao nN OH iN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 238 Mr. Harrison. Do you have as a part of the National Commission on Correctional Health Care a component that delas with research and experimental treatment for prisoners? I know yours is education, but in the Commission itself. MR. HARRISON: Are you asking do we have a policy on that? COMMISSIONER S. ALLEN: Right, an ongoing study perhaps. MR. HARRISON: No, we don’t have a study going on. We've addressed the issue, I’m trying to recall if it has been developed into a policy or not. I apologize that I’ve only been there for three years, so I’m unable to answer. I know we've discussed it. Our policy on testing, prevention, I’m uncertain. I’ll find out and get that to you. COMMISSIONER S. ALLEN: Could you send us whatever you have? Thanks. MR. JONES: I’ve done some advisory work with Lydia Watts through your agency, and basically, most of the correction--none of the correctional--how do I lump them all together, American Correctional Association, National Jail Assocation, et cetera, COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 239 have not gone beyond brainstorming any developed policies around the drug clinical trial issue. They began within the last year to really discuss the issues. They have pretty much assumed that clinical trials for the incarcerated population was an issue. They've had a hard enough time trying to address testing issues. MR. MOORE: I think another issue in special materials is so much of it is based on this sort of psychology of doom and hopelessness and does not reflect where we actually are in addressing the issues of treatment for HIV positive, particularly for asymptomatic individuals, and that education must keep pace with those advances, and we can’t simply sort of have this all or nothing view of what we tell people. We have to bring them along with the changes as they occur and we have to develop materials that give people hope and make them buy into a process of change. COMMISSIONER AHRENS: I have a question and then maybe a comment for Mr. Harrison. I believe you’re the only panelist that we’re going to hear today that’s going to speak to the juvenile issue and COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 240 I’m glad you’re here, I think it’s terribly important and a lot of folks we have in prison were probably infected as juveniles. It's a little unclear to me, I feel there's a breach here that I’m missing as to where did you direct your recommendations in terms of education for juveniles in the criminal justice system? To whom are those comments or policies or recommendations, where are they focused? MR. HARRISON: The standards that we've developed are widely recognized as medical standards and should be followed in jails, prisons and juvenile detention facilities, although not all facilities do. Those that feel they do usually come to us and ask to be accredited, that they have met those standards and we have a different set of standards for different groups. They deal only with medical issues, and so it’s generally the medical departments that are recommending to whomever, the sheriff or the superintendent or the warden, depending on the type of facility that they go in for that type of certification. COMMISSIONER AHRENS: Just to comment in COMPUTER AIDED TRANSCRIPTION/keyword index oO i & Ww ~J 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 241 terms of how you’re directing those, in my experience there are two ways of getting at education for juveniles that are in trouble with the law. One is a very directly in terms of either--and most of these are in county facilities or under county jurisdiction, would be through the county boards or the head of the Corrections Department in the county simply mandated that within the facilities operated by the counties that this shall take place, but the other, and it’s a little more difficult to get at because there's SO many more facilities that counties contract with that house juveniles that have been in trouble or are in trouble with the law, and that can be done through contracts, because we contracted to these facilities to provide this, but within the formulation of the contract you can include a component for relevant culturally sensitive, et cetera, AIDS education, and that then is monitored on a yearly basis. So there are some ways of getting at this and I don’t know how much, how specific you get with counties, but it’s been my experience that they haven’t really thought of these, most of them have not really given much consideration to how you COMPUTER AIDED TRANSCRIPTION/keyword index 2n 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 242 implement something like this and I think you could be very useful in helping them think that through. MR. HARRISON: I would just like to comment on that. Thank you very much. We find facilities anxious to get our help. We don’t have a problem finding people who want the education in part because there’s a fear, in part because they want assistance and in part because we give it free. The juvenile facilities as well as the adult facilities are strapped for funds and any help they can get outside that is free is greatly appreciated. It is a state law in a number of states that students that are confined must get equivalent education to what they would get in the public schools, and in fact, then, the public schools come in and operate a regular school. It’s not quite regular, but it is a teacher who may spend some time in a public school and then come in and spend some time in a facility. It happens in some, I won't say most cases, but it isn’t an unusual circumstance in a number of states. In other places the facility feels totally in control, all the staff that is in there that deals COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 243 with the children are employees of the facility itself, and if they have a health education program, it might run anywhere from the gym teacher spending an hour every six months talking about birth control, perhaps, to something that’s much more intense, so you do run the gamut, and if I can comment with my experience in juvenile facilities has been similar to what I’ve seen in adult facilities, and that is the management makes tremendous amount of difference, the executives in charge make a big difference in the type of program. Regardless of what the policies are, regardless of what the laws are, it’s the caring and the quality of the leadership that makes a big difference. DR. OSBORNE: That seems to be a very powerful generalization in general, and that I think is several of the kinds of testimony we’ve heard in the last couple of days would lead to that kind of conclusion, too, to find ways to inspire management. I think at this point we should take a break and try and keep it to as close to ten minutes as we can, quite literally ten minutes. We do need to get back so we can hear either other important witnesses still. COMPUTER AIDED TRANSCRIPTION/keyword index 10 li 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 244 (Brief recess.) DR. OSBORNE: Could I get everyone to take their seats, please? If I could ask the participants in the next panel to join each other at the table. Justice Andrias and Scott Burris and Mr. Pottenger. You probably heard, may have heard me say this, but the Commissioners most enjoy especially if there is a written testimony, getting a chance to read that at their leisure, but to use our time together as interactively as possible, so if you could use that as a governing principle in your remarks, and we'll look forward to having the chance to talk back and forth. Justice, please, if you would like to go ahead, I think we need to in the interests of time, people will join us as they can. MR. ANDRIAS: Good afternoon, my name is Richard Andrias, I’m a Justice of the New York State Supreme Court, and I come here to offer possibly a slightly different point of view than some of the litigators or other professionals that you have heard identify the issues and offer solutions. It’s obvious to as learned a body as this that the incidence of HIV infection in the COMPUTER AIDED TRANSCRIPTION/keyword index nH Wl -» WwW WN 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 245 correctional population and the broader criminal defendant or arrestee population is high, growing. I’ve noted in my remarks drawing on NIJ studies and others that it could be frighteningly high and conceivably the majority of people in certain institutions can be infected, and thus the criminal justice system finds itself ina sense in the vortex of the epidemic in some respects. With all respect to my colleagues at the Bar, I have outlined and I want to stress what I think are the limitations on the litigation process. Some points that I didn’t mention in there are, first of all, how overburdened the courts are and the kind of attention that even the most weighty matter such as litigation over either substantive or procedural issues such as HIV, how difficult it is to give them the proper attention, and I’ve listed what may be cliches at this point, but some of the horrors that surround litigation: The delay, the difficulty in effecting a solution, either by a judge in settlement or a jury; the difficulty of litigation; hardening lines between the parties; the difficulty of monitoring even adequate solutions at the end of a long process, and particularly to where courts are COMPUTER AIDED TRANSCRIPTION/keyword index Oo Oo NJ NH UWI 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 246 supposed to have cases and contraveries before them, people inevitably die during the process, aside from depleting their already greatly depleted resources, so although I am a trial lawyer, retired for the moment, and a trial judge now, I have very little faith in most instances in litigation, except as a last resort, and clearly, Ms. Freeman and her colleagues and others must on occasion bring lawsuits and certainly that’s why I’m in business, to resolve disputes. But I think given the issues surrounding this particular problem and the human dimensions of the problem, litigation is in many respects a last resort and alternatively, I think that either proper court guidelines or Bar Association, ABA, or other guidelines are a far more appropriate solution coupled with the education that goes along with the process of drafting the guidelines or rules, and implementing them. It can do a lot of things. First, it can eliminate most lawsuits, particularly in the procedural area, and I cite, summarize the ABA guidelines in the criminal justice area, and I have the Association of the Bar's report with me, which COMPUTER AIDED TRANSCRIPTION/keyword index & no Wh 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 247 basically critiques the New York attempt at having guidelines. But as I say, you have an educative effect of drafting and then promulgating and working with these guidelines that can reduce enormously litigation, particularly in the procedural areas, and hopefully which will educate the ultimate decision makers, usually judges, and maybe make those cases where there is a substantive issue be litigated a more enlightened result, so I think it’s a far more productive avenue. The process is not always easy, particularly in such a system that we have in this country, wher every state, in many instances every county has different judicial systems; different judicial administrators and different lawyers, but I think it’s really the only efficient and appropriate way to go, particularly in the area of correctional law and procedure. It’s very difficult to monitor even the most enlightened decisions and orders of even the most eminent federal jurists, so whatever the results of some of the litigation that comes up, you can’t be behind every sheriff, correctional officer, correctional official, you just can’t be there, and I COMPUTER AIDED TRANSCRIPTION/keyword index na UW 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 248 can assure you that it’s one thing for a court to issue an order, it’s another thing particularly in areas as murky as these, to see that the orders are Carried out. | In conclusion, I want to stress that I think the most appropriate answer is, since we have in a sense ironically a captive audience, i.e., people who are probably infected and are also captives of the criminal justice system one way or another, either in jail or under court mandate to come back to face charges, both drug education and education--drug abuse or drug abuse education, drug treatment, whatever it’s called, and HIV education is imperative. The difficulty with it is, and I’m sorry I didn’t hear all of the prior speakers, I heard one gentleman, the difficulty in New York with colleagues who have tried to fashion some kind of an effective education process, is two-fold. First of all, there’s the sensitivity issues that you’ve talked about and heard about and I am certain it’s beyond my expertise, but secondly, usually you have a moving target. In New York, most people after they’re arrested and arraigned, although it’s an interminably long time if you're an arrestee, COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 249 it can range from several hours to several days, usually you’re released on your own recognizance and therefore you're out ni the community again, so it’s only a brief window that the criminal justice system has the person in its clutches, and even where people go to jail pretrial, they are not there for long, statistically. Again, if you're in jail I assume it seems like an eternity, but it isn’t statistically long. And third, if you’re sentenced to jail, given overcrowding, firstly, there’s moving prisoners about and secondly, people aren’t in that long today, so even where the most enlightened educational programs are in place, it’s difficult to have appropriate coverage, repetition and so on. And particularly, now, with jurisdictions either rescinding or not adopting needle programs, for political and other reasons, and other difficulties with trying to educate an IV drug user population, I think it’s an important Opportunity for the society to either at arraignments or at that very brief moment when people return to the courts to stress education. Mechanically doing that is something for others to devise. We're working with COMPUTER AIDED TRANSCRIPTION/keyword index nN iW & WwW WN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 250 the Health Department, court administrators and we’re going to have a pilot project in New York hopefully this fall. It’s not going to be particularly effective, but it’s a first step in a mail notification wher every defendant is notified of their court date and it will be hopefully appropriate educational material. Having people physically present in the courts as people go through the arraignment process is costly, difficult and something we haven't been able to achieve yet, but I think it’s imperative and it’s a cost certainly far less than the health costs that burden our health systems. You can read; I hope that my written materials are somewhat enlightening, and particularly the attachments would probably be far more helpful to you. Thank you. DR. OSBORNE: Thank you very much. If it’s all right, we’ll have each of you speak seriatim and then have a chance to interact with all of you. MR. BURRIS: The court system has been our friend in the AIDS epidemic for the most part. There have been some exceptions, but by and large I think COMPUTER AIDED TRANSCRIPTION/keyword index qo WwW > WG NO 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 251 it’s safe to say that federal courts and to a lesser degree state courts have protected the rights of HIV patients to some degree and help how society responds to the epidemic. What I question in my testimony is whether the courts will have the same role in prisons, and I think they won't. I start with the position that HIV infection and the HIV epidemic in prison is for most important purposes pretty much the same as HIV infection outside prison. It’s part of the same epidemic, the people are part of the same community where the epidemic is thriving, they're temporarily absent but will be back. Therefore, when I think we want to evaluate or identify what will be a success in dealing with the HIV epidemic in prison, we would use pretty much what we would use in evaluating the HIV epidemic outside of prison. What we are talking about doing outside or actually doing outside ought, unless there is specific reasons that they can’t be used inside, indeed be used inside. We look back at the cases that have happened so far in the courts where prisoners have COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 252 brought claims against prisons for things that they are either not getting in prison or against prison practices that they object to. I’m afraid we see by and large a considerable inattention to medical facts, an unwillingness to be at all on the cutting edge of treatment, an unwillingness to second guess the medical judgment of non-medical prison personnel; in fact, I think an unwillingness to look very closely at the problem at all. I think there are several reasons why courts have refused to accept the challenge to respond appropriately or heavily to AIDS in prisons. First of all, and this is a big one, the law is just not very good. There is a presumption in the law of prisoner rights that prison officials are acting correctly. This sharply distinguishes litigation in prisons from general health law, where in practice, and I think even to a certain degree in doctrine, the presumption that officials are acting appropriately has disappeared. When we have challenges to health actions outside prison, there’s generally a lot of attention to whether or not those health actions are generally approved by responsible health officials at a COMPUTER AIDED TRANSCRIPTION/keyword index oOo SNS DO WI 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 253 national level and whether they are appropriately being used to address a real problem in a particular instance. That just doesn’t happen in prison and you can see that the most ridiculous justifications for action are accepted by federal courts who if the plaintiff were not a prisoner might throw the whole action out. It’s also true that prisoners’ rights to to medical care in particular are very limited. It is true that unlike other people, people on the outside, prisoners can go to court and say, "I’m not getting a certain level of care and I should be getting it," and they have a legal claim. The Standard that the courts use, however, is deliberate indifference to a serious medical need. That standard can be used by judges to enforce good care for AIDS, but it can also be used by judges to deny it. It's simply a set of words, an empty vessel into which judges can put their attitudes and their willingness to intervene. I think there are also practical barriers. Justice Andrias has referred to some of them against intervention in prison and against successful HIV suits in general. These cases are very hard to win COMPUTER AIDED TRANSCRIPTION/keyword index nO Ww > Ww HO ~J 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 254 from an attorney’s point of view. A great deal of the cases don’t have attorneys who could face that difficulty. The vast majority of the cases we've seen so far have been brought by inmates who had no legal help in preparing the papers. They were dismissed by the court at the earliest available opportunity legally before there was any discovery, simply on the basis of the legal claims made in the papers. That’s just not going to work, given the deference that prison officials are due under the current law. The only way to win the case is to get lots and lots of evidence that shows lots and lots of abuse, get a doctor to go through the medical records and point day after day where something wasn’t done that should have been done or some grossly negligent, deliberately indifferent act occurred that just cannot be written off as a single isolated event. Prisoners aren't in a position to prove those cases, and if the courts essentially say that deference to the legal discretion of correction officials will be a reason for courts to ignore the factual allegations of abuse of discretion, we're simply going to get nowhere in court. COMPUTER AIDED TRANSCRIPTION/keyword index no Ww 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 255 The ACLU will be able to bring a few suits for a few prisoners, but I can tell you in Pennsylvania we have about 71 correctional institutions between counties and the state and I can’t bring a case in every one of those institutions, although I can say that a good third of them have serious problems. I think, to conclude, the most important reason that I think we can’t count on courts is also one that’s really not blameworthy, and that this is a public health problem. I’m an attorney and I'd like to enforce rights, but looking at what's happening in prisons, I see the need for testing programs, I see the need for education programs. These are things that may not even have a legal hook in every instance, and there are things that prisons are not really equipped to do. There are things that even if you ordered a prison to do and you could come up with an order that was enforceable and monitored, you would be ordering the wrong people. Therefore, what I’m recommending to the Commission, that you use your pulpit and your credibility to make a series of recommendations about how AIDS should be handled as a public health problem COMPUTER AIDED TRANSCRIPTION/keyword index Ww NN) 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 256 in the prisons of this country. I think at the very least you need to issue a call for across the board nationwide public health intervention among people with HIV who happen to be in prison. I think it would be even better and more helpful if you actually tried to develop some Minimum standards for what an intervention should be, also minimum intervention for what kind of health care should be available. I know this is sometimes difficult to do, but on the other hand, we out there have nothing to point to right now or very little to point to. We don’t have any authoritative book to use. We can’t talk about national standards ina very effective way. I certainly think also we need to hear something very strongly from you about confidentiality and anti-discrimination. Right now it’s very difficult to find a prison that really protects confidentiality, and without confidentiality there’s simply a daily invitation to discrimination. We haven’t had very good success either in policing that discrimination, because prisons are just not open to us, and it’s always a prisoner’s word against a guard’s. COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 257 Certainly I think there ought to be some effort to deal with improving access to cutting edge therapies. That’s a very difficult area, but I think it’s a very appropriate one for the Commission to make recommendations on. I think also we need to get the Centers for Disease Control to come out very strongly for a public health approach to prison HIV, more seroprevalence studies, more efforts to foster the development of programs that will work inside prisons for education and medical care and of course drug abuse treatment is also something that is lacking in prisons. It’s all in my papers. I, too, know you can read, but I hope that you will not only just read, but also write and produce something that really can become the centerpiece of a renewed national interest in dealing with this part of the HIV epidemic. DR. OSBORNE: Thanks very much. MR. POTTENGER: My name is J. Pottenger, and unlike the two gentlemen on my left, I had the foresight not to give you copies of my testimony, so you're stuck with listening to me. I have given your COMPUTER AIDED TRANSCRIPTION/keyword index > Ww nh wi 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 258 staff a copy, however. Before I deliver what I planned to say, though, I want to comment briefly on something that Scott Burris just said. He talked about the deliberate indifference standard as an obstacle to the level of medical care in correctional facilities and the federal standards. There’s no question, obviously, about that, that’s the 8th Amendment Constitutional standard, but that’s not necessarily the standard of care that correctional officials and doctors owe to their patients, and I don’t want people to forget that there are malpractice levels which are in theory lower and which ought to apply under state law certainly to the level of care that gets delivered inside the correctional facilities, and one way that my office has managed to use that once in the HIV context and once not, was to try and look at prison as a barrier to access to care, and to find a health care provider in the free world who was ready, willing and able to give the care that the prisoner sought to the prisoner, and then the institution obviously denies access to that care, and then the institution is in the awkward position of either COMPUTER AIDED TRANSCRIPTION/keyword index a iu ~J 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 259 having to deliver the care itself or put the person out in the community in a position where he or she can get it. This worked for us in one case for an inmate who wanted ddI treatment for his condition and just this spring for an HIV infected inmate who was in federal prison custody and who wanted access to ddI, his prison doctor recommended it, the people at the institution said we don’t give that, so we prepared papers saying, well, we’ve got somebody on the outside who wants to give him ddI, and it’s only by reason of him being incarcerated that he’s not getting it, and they ended up releasing him. So I think it’s not quite as bleak with that deliberate indifference standard, doesn’t have to be quite as bleak with respect to the quality or the level of care that gets delivered. Treating it as a community care problem and a but for access issue is a different way to look at it. Another thing that Scott mentioned, and it was in passing, subtle, but very telling, and that was about deferring to the medical judgment of non-medical personnel. I’m sure you’ve all heard that. COMPUTER AIDED TRANSCRIPTION/keyword index nm ~J 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 260 One of the goals I think of anybody who is representing prisoners in this kind of a context ought to be to get them to have access to the medical care personnel, not through screens by custodial personnel, and in Connecticut we’re trying to do that in two ways in particular: One, with something of a prod from us, the Department of Correction is exchanging its initial health screen exam, which it gives to every--and Connecticut is a unique state, because the Department of Corrections combines the jails and the prisons, so all the jails are under the authority of the Correction Department as well as the longer term institutions. What that means in practical numbers is that there are about 50,000 inmates, close to 50,000 inmates who pass through the Department of Correction in Connecticut each year, even though there are only a few more than 8,000 beds. There’s a very high turnover rate, a lot of those people are there for short stays in the jail, but they all get an initial health screen unless they’re out within an hour or so, and up until recently those health screens have been performed by custodial rather than medical personnel, and one of the things we’re negotiating COMPUTER AIDED TRANSCRIPTION/keyword index me WwW NN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 261 with the State about is to have all those screens done by so-called medical personnel rather than custodial personnel and that’s supposed to do two things: One, it creates a duty of confidentiality, a medical duty of confidentiality, a confidential relationship between the screener and prisoner which doesn’t exist otherwise and which may, who knows, there aren't very many secrets in prisons, which may facilitate some of the problems of confidentiality that Scott talked about and it may also result ina heightened capability or competence on the part of screeners so they can pick up when people are suffering symptomology of HIV infection come through the system so they can be spotted at an earlier stage and put on to a faster track toward medical treatment and attention, which is one of the other things we’re negotiating with the State about. The other thing we're trying to do to enhance the direct access to medical personnel, is to supplement the normal sick call system with a direct access to medical care in which a prisoner can through use of a locked box make a request to see medical personnel and that box is only open to and COMPUTER AIDED TRANSCRIPTION/keyword index — Ww hh) n Ww 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 262 opened by medical personnel, so an inmate doesn’t have to go through a guard or through a custodial person to carry his or her request to get access to the medical department in that fashion. I’m not here to pretend that miracles get worked, but either of those may help some of those concerns. Now, let me get into my planned remarks. My designated topic for this afternoon is the making of HIV AIDS correctional policy through litigation and I agree with the judge that it ain’t a good idea, that's my main, first paragraph. It’s a chancy undertaking, I don't recommend it. The courts are reluctant to intervene in issues of prison management, even as to life and death issues and HIV AIDS policy is no exception. There’s no magic exemption, even for as serious an epidemic as this. That said, unfortunately, there are and there have been, at least in my experience, some situations where litigation is the only way to assert the rights or to try and bring the situation of your client to the attention of somebody who can do something about it, and the two situations or the two COMPUTER AIDED TRANSCRIPTION/keyword index nO Ub & WW ~J 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 263 generic, I tried to think about a number of cases that we've had in our office, and the two generic situations that I can try and describe are one, where in an individual case the prison bureaucracy for some reason is just not responsive and you’re not able to get to somebody who has the wisdom or self protective instincts to deal intelligently with a very serious situation, and so you have to flash some lawsuit papers in front of somebody to get their attention, and the other is when there’s a political policy-making paralysis in which the prison administration or the Department of Corrections administration, because of the different concerns and pressures on them, can’t do the right thing, even if they will tell you quietly that they would like to do the right thing, and the situation that perhaps illustrates that easily is a problem in Connecticut of confidentiality. We were negotiating with the Department of Corrections for quite some time about trying to enhance confidentiality protections and the Department didn’t want to hear from us, and partly they didn’t want to hear from us because there was civil legislation pending in the State legislatures COMPUTER AIDED TRANSCRIPTION/keyword index 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 264 and the Governor's cabinet was meeting on this, trying to figure out what their position was and the Department of Corrections was busy lobbying in that forum to try to get as big a gaping hole in the Corrections Department in the protection they could, and didn’t want to deal with us, but they also had a problem with their guard’s union, who desperately wanted to know who was infected and who was not infected. Connecticut is a good union state, even if it doesn’t vote Democratic in presidential elections, and so that element of the correctional system put a lot of pressure on the prison management and prison administration not to make a deal with the civil liberties bar about confidentiality and privacy and so forth, so you're left with a paralysis at the Department of Corrections which can only be resolved through litigation. DR. OSBORNE: Professor Pottenger, I'm happy to teil you our staff was swifter than a speeding bullet in giving us copies of the written testimony. So if you could highlight for us parts we should read deliberately, we want to interact with you as well. COMPUTER AIDED TRANSCRIPTION/keyword index no wm ~J 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 265 MR. POTTENGER: That’s great, I was elaborating on it slightly already, but you already knew who I am, then, and you know why I think I know something about this. I described the federal situation before, where the man was trying to get ddI treatment. As I mentioned in the testimony, he got transferred from federal custody into the custody of another state, and I think the problem of release planning and transition pianning and I highlight that in my written testimony, is one that really bears attention. Oftentimes records get lost, records get mislaid or nobody pays any attention, and people, that kind of delay is fatal for this population. And so not simply interjurisdictional transfers pursuant to detainers, but even intrajurisdictional transfers, from one jurisdiction to another, present special problems for this population and making sure that the medical information follows the inmate in a way that the medical department is able to make timely intervention and timely monitoring is very important. I do want to put on the record some of the good things about the class action that we brought in COMPUTER AIDED TRANSCRIPTION/keyword index s no ir & Ww Nh 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 266 Connecticut. As you could see from the paper, the Civil Liberties Union and the Yale Clinic represent a statewide class of all prisoners in Connecticut with respect to HIV issues. The suit concerned four different issues: Education and counseling, medical care or treatment and confidentiality. We settled half the case. We settled a year ago the education and counseling part of the dispute, and as a result there is now universal HIV education in the Connecticut prison systen, and since it’s a unified system, that means everybody who goes to jail in Connecticut and Stays a day as part of their orientation in the institution gets some HIV education. The numbers that they gave me the last couple of days are impressive. In the last three months, over 10,000 inmates in Connecticut got HIV education as part of their initial orientation, that’s in the last three months and that’s on an ongoing basis. Also, pursuant to the settlement, there’s been one hundred percent education of the staff in the correctional system, both medical and custodial personnel, and that’s on an ongoing basis. COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 267 Counseling is enhanced and so forth and I gave you some statistics about that. Confidentiality I think is the toughest nut. Like I said, like Scott said, there are no secrets in prison or there are very few and realistically there’s also a tradeoff in this kind of a situation, because to the extent that you keep under lock and key and in a very small group the information that an inmate is infected, you perhaps restrict his ability to get special attention and monitoring either through counseling and support groups or through medical care at a more intense and enhanced level, and so it’s a tradeoff that one has to recognize right from the outset. That having been said, one thing that this Commission could do is to underscore the importance of confidentiality and to underscore the fact that the people who need to know that somebody is infected with HIV is a lot smaller than prison guards and prison management even think. Personally, I don’t understand why the warden needs to know who has HIV in his prison or her prison. I honestly don’t. I think the medical department needs to know, and beyond that, it gets COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 268 pretty hard for me to figure out why anybody needs to know, and the exception that, "Oh, the head of the institution needs to know, and the head of the Department of Corrections needs to know" falls off people’s lips relatively quickly and I think without examination. To the extent that it’s possible, if this Commission could push the guidelines such that only medical personnel are the ones who know somebody's HIV status, and the information is in their medical file and not reproduced and not spread around in other places or in other fashions, I think that would be the ‘best protection that you can have for confidentiality in an admittedly difficult environment, especially if that’s coupled with intense training of the medical care personnel in their confidentiality obligations. They sometimes forget, I think, especially the lower level people. In Connecticut they're called medics, which is a guard who had some training in medical issues, but impressing on the medics that now that they’re a medic, they’ve got professional, quasi-professional, para~ professional obligations of confidentiality, can be a step toward trying to COMPUTER AIDED TRANSCRIPTION/keyword index rn Ww & WW KH 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 269 enhance to the extent possible some of the protections that we’re all concerned about. Thank you. DR. OSBORNE: Well, thank you and thank all three of you for important testimony. Are there any questions from the Commissioners? Larry? COMMISSIONER KESSLER: Mr. Pottenger, I was wondering if you had any sense of what that education is? Is it more than a brochure? MR. POTTENGER: The education that’s going on now for the 10,000 inmates? It is. It’s a brochure, it’s a videotape and it’s a live question and answer session. It’s a live presenter. It’s primarily a videotape with a presenter and that’s the orientation. There’s also a brochure. Then in addition to that, every institution has a weekly more in depth educational session which is voluntary, but the three components are brochure, videotape and live presentation question and answer. COMMISSIONER KESSLER: Is there any plan for followup six months or a year later? MR. POTTENGER: Only through weekly COMPUTER AIDED TRANSCRIPTION/keyword index ao sn DO Wh Pe BUN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 270 sessions in the institutions. Unfortunately, given recidivism rates, there’s followup in that fashion. For too many of the people who get it the first time, but not--and the program has obviously changed. You don’t come into jail a year later and see exactly the same thing that you saw the last time. COMMISSIONER KESSLER: What’s the status of condoms in Connecticut? MR. POTTENGER: Our Commissioner is not in favor of condoms. COMMISSIONER J. ALLEN: Two questions: Is there anything the courts might be able to do in terms of the issue of condoms being available in prison? That's something that certainly would be available on the outside. MR. POTTENGER: That’s an interesting application of the theory that I spun out for you. I think the fact that it’s proscribed behavior in prison, it violates the rules to have sex, suggests that the courts are not going to see it as appropriate for themselves to step in. MR. BURRIS: We’ve tried to put, the strategy has been to try to take the things that are public health interventions outside and find a way COMPUTER AIDED TRANSCRIPTION/keyword index nO iW & 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 271 that they become something that a prisoner is entitled to get, so for example education is cast in lawsuits as part of medical care or it can be cast as part of the federally funded prison’s anti discrimination obligations. If they don’t educate their prisoners about HIV, then there’s more discrimination about HIV, so if we find something to put a condom on in prison in terms of the law, then there’s a chance of getting them in, but I think the chances are remote. MR. ANDRIAS: New York City jails distribute them, at least on a certain basis, although I don’t know why they use them, because there’s no sex in prison, apparently. That's the policy, but they are distributed. Why, I don’t know. It seems to be contradictory. I don’t see the courts getting involved in that particular issue. I just don’t--at least in most jurisdictions. I just want to stress one thing, it’s not a question, but I didn’t get to touch on it except briefly. While you were focusing on the correctional issue, most people don’t go to jail in this country and a lot of people don’t like that and think it COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 1? 18 19 20 21 22 23 24 25 Proceedings 272 Should be the other way around. So we don’t, although this is your focus at this session, it shouldn’t be the focus necessarily of your overall view. Most people accused of crimes, I think rightly so, are trusted at least under the state systems that they’ll come back. Many don’t, but that they’re supposed to come back, and to suggest that the focus is just on incarcerated or detained people is just being myopic and it’s part of the irony of the fear in the court system when the people come--I mean, the people can come out of the audience infected, but God forbid somebody comes out of the pen, if they’re infected it’s often hysteria, or it used to be it isn’t now. If somebody came downtown on the subway and showed up for their case, they’re in exactly the Same medical situation, and it doesn’t cause any concern at all, which has helped us on the education of correctional and what we call court officers here, I guess bailiffs in other places, which are the same people. Some days they’re in, some days they’re out, we parole them or release them, they come back in on a new case, whatever, it’s all the same population in COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 273 many cases and the problems are the same. It changes when they go into detention, but a lot of issues don’t change and the education, if we’re talking about ending the epidemic, which is a public health objective, it’s the same population, really. COMMISSIONER J. ALLEN: I’d like to follow up with one additional question that I’m going to direct to Mr. Burris, but others can feel free. I’m intrigued with your call for national standards and the implication being that you would take those and could use them, then, through the court systems to try to get implementation if they aren't picked up and otherwise directly implemented. I think that’s a marvellous idea, except that with this epidemic, both for public health practice as well as for medical practice, progress is. being made so rapidly, and approaches are changing, that by the time we get national standards out to the point that they could be used in the court systems, things are already beginning to change, and I never, I don’t see that in a system that depends on Stability and being able to take that standard and then over a period of time, usually months, often COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 274 years, that things are going to be so badly out of date that whatever standards are put in place aren't going to be useful. MR. BURRIS: Well, that’s entirely true, except the final part of what you said, which is that they wouldn’t be useful. All standards that have been promulgated have more or less quickly gone out of use or become less accurate. On the other hand, if you look the at the AIDS litigation in the last ten years, you'll see that CDC guidelines were enormously influential in determining how courts would behave, for example, when children go to school. / Those guidelines have changed over time, they have sometimes been misinterpreted, I believe, or have been less than clear, for example, on the case of whether or not health care workers should be tested as part of their job. Some courts have misinterpreted that. On the other hand, the existence of those guidelines has been the mechanism by which some sort of national standard of public health practice or national understanding of what the best response to AIDS in certain situations should be has worked its COMPUTER AIDED TRANSCRIPTION/keyword index —>- iW hh na wm 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 275 way into court. We don’t have anything like that, really, in prisons. I mean, there are some prison organizations that have produced guidelines, but by not having special guidelines, for example, on confidentiality in prisons, or on the application of the HIV test in a prison setting, things like that, these are things where there’s not going to be a whole lot of change in terms of the medical developments underlying them, but by having only a standard for the quote-unquote general population, we have an immediate out for the ad hoc decision making within prisons. I think that while I want to acknowledge that there is a problem in promulgating more specific guidelines, for example, on medical care, I want to suggest to you that it’s nevertheless important to try even if they’re useful only for the next three or four years or if they‘re produced with the caveat that events may change their applicability. Certainly, for example, we have a fight to get regular monitoring of people's T cells after they’re identified. I can’t imagine in the next five or ten years that it’s going to cease to be good practice to give somebody a good physical where COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 276 they’re actually touched by the doctor, and where they get certain x-rays for example for TB, and I'm not even a doctor, so there may be mistakes in here, but what I picked up over the years, certainly where there are T cells being monitored, those things have to happen and when the CDC tells someone in a prison, that you have to do, following certain kinds of things, monitoring, a person has to be evaluated for drugs, among which are currently Pentamadine or A2T, I really think that would have a great impact. It would be much harder for them to say we live up to the American Correctional Association guidelines, we’re a certified institution, we do the latest thing, anything FDA approved we approve. It’s very non-specific and allows them perhaps more discretion then they always deserve to be able to exercise. MR. ANDRIAS: This isn’t an advertisement, and I certainly am very selective about ABA policy myself, but there was a committee set up about two and a half years ago, the ABA house of delegates did pass guidelines on both, well, the issue on criminalization of AIDS, the courtroom setting and correctional setting, which are appended to my COMPUTER AIDED TRANSCRIPTION/keyword index Ww NN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 277 testimony. I will say that I don’t think they realized what they passed, but the committee had a very broad spectrum, and it was very conservative people, almost Reagan appointees. There are standards. I would like to think they were pushing the standards aggressively. It’s not really being done, I’m sad to say. I think although it doesn’t go to the detail that’s been suggested in the health care area, you would do well to push our standards better than we're doing, so-- COMMISSIONER DALTON: scott, I think in your colloquy with Jim Allen, it became most persuasive when you began talking about specifics and it occurred--I say this advisedly, as you know there are other things I’d rather you be doing with your time, but if you were to work on some minimum standards for treating HIV in prisons as a public health problem, it would give us something to chew on, and maybe with the help of some doctor who can help you, specifically help, so that would be truly helpful. MR. BURRIS: I'll be happy to do it. MR. POTTENGER: We can send you the thing COMPUTER AIDED TRANSCRIPTION/keyword index > Ww NY - Oo oOo ~~ DH A 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 278 we worked out with Bobby Cohen, who testified earlier today, which is a protocol and sort of time flow chart for what ought to be done when. COMMISSIONER DALTON: That would be terrific. Thank you. Justice Andrias, you’re absolutely right that lawyers often tend to be myopic, actually everybody tends to not appreciate the extent to which it’s really the criminal justice system short of incarceration where much happens. Scott Burris and I, in the first edition of our book, were myopic in that sense, had the sense to have a chapter added on the criminal justice system. I should have asked you to write the chapter, you would have been superb. But Martha Fields, if she calls you for some real practical advice, will you please talk to her about this? I’m really serious about this. I, too, ama believer in judicial guidelines as being important and effective, both within litigation and after litigation. The problem is, it requires people like you, rather than people like me, to get your colleagues to pass such things or Judge Hennessy in Connecticut, but there aren't COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 279 enough folk like you around, but there’s also the problem of enforcement, and you mention in your written remarks that there needs to be firm implementation and I guess I want to know how can you in fact implement judicially derived guidelines for how judges should behave, how probation officers should behave, how lawyers should behave with respect to HIV in the courtroom. How can you put teeth in those? MR. ANDRIAS: Well, it’s a major problem. Judges are independently elected Or appointed and for Some reason feel that nobody can even suggest what they should do in a lot of instances, and judicial education, unless it comes from the inside, is difficult. We are the worst in a sense of being receptive, because the nature of the position is that _ while you’re there you make decisions, so you assume that you know everything. And I am sad to say there has been judicial education offered to judges; financial, everything taken care of, and you’re familiar with one project, but I became consultant informally to another one where nobody was willing to pick it up. it’s extremely difficult, so I guess the only answer COMPUTER AIDED TRANSCRIPTION/keyword index ao Mm & WW 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 280 to that is that people can’t get discouraged, and that wherever there’s an opening, whether it’s at an ABA’ convention, which was a very shabby turn ut, I must say, where we were put down in the basement and people like your Chair had come to talk to 16,000 lawyers and maybe 90 showed up, if we’re being charitable. There‘s no simple answer. Part of that--and John Grissom, the former Chair of the criminal justice section of the ABA, will tell you how horrible it is in the federal system. If you think local and state people are difficult, give somebody life tenure and then try to educate them about something. So with some exceptions, federal judges are not receptive. So for Commissions like yours, which have the imprimatur of the federal executive, it’s very important, every time there’s an opening, you have to take advantage of it, whether it’s traveling and speaking somewhere or--I turned down a trip to Hawaii last year because of my own pressing business, I didn’t want to, but those kinds of opportunities, it’s very difficult and I have no simple answer. I get periodically and cyclically COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 281 discouraged in New York. I don’t know what it’s like to appear before judges when lawyers get depressed, I’m sure they get depressed, it’s depressing within the judiciary, because the answer is, oh, we did that last year, we had our session on AIDS. The fact it wasn’t mandatory and wasn’t followed up on--and again, we also have a moving target, we have people going in and out of the ranks of the judiciary also, so it’s a continuing obligation. | So I have no real answer to it, I really don’t. / DR. OSBORNE: Thank you all very much. We've got two additional important witnesses, and so I think we probably need to move on, but we’re very grateful for your taking the effort to come join us. I’d like Cathy Potler and Romeo Sanchez to come up, please. Thank you both for joining us, and you probably heard me say ad nauseam if you could make your comments brief, so we have a chance to interact, we'll enjoy that and if you would talk in sequence, and then we can talk with both of you. MS. POTLER: Thanks, it’s a pleasure to be COMPUTER AIDED TRANSCRIPTION/keyword index 10 f& Ww hh wn 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 282 here today to talk about an often ignored issue, early release for terminally ill prisoners with AIDS. If there’s one thing that I want to leave you with, it’s the importance that a prestigious organization like the National Commission on AIDS can take in terms of making very specific proposals, recommendations in favor of releasing seriously ill prisoners with AIDS prior to usurping their minimum sentence. There really is no jurisdiction that is really dealing adequately with this issue, and it would be really, really important to have a proposal from you recommending early release. Before I discuss the areas in my testimony, I just want to talk for a moment about who the prisoners are. I’m going to talk specifically about New York, since the organization for which I work has legislative authority to go in and inspect prisons throughout the state and report to the legislature their conditions, and since 1984 we've been focusing on all aspects of the AIDS issue in New York State, and I just want you to be aware that we’re talking about prisoners with AIDS, we’re talking primarily, perhaps 90 percent of people who COMPUTER AIDED TRANSCRIPTION/keyword index a4 oO OM 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 283 are African American and Latino, we're talking primarily about IV drug users, we’re talking primarily people who are from New York City and for women, we’re talking about women who have died, who have left two children, on an average of two children, and we're also talking about people who have predominantly been convicted of money seeking crimes in relationship to their drug habits. So I just from there want to talk a little bit about the importance of early release of termly ill prisoners, and I’m going to take it from the angle of the family, because I think very often we think of prisoners as being the person who is incarcerated without any other relationship to aa family unit, without any relationship to our community, so I think it’s important to talk a little bit about where the family fits in all this. We do run a program where we provide support and referral services to families and friends of prisoners and releasees with HIV or AIDS and one of the issues that comes over and over again to us is how much the family members want to be with the loved one, particularly during--I mean through all stages of the illness, but particularly during the last COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 284 stages, and many of us know that the relationships have been rather rocky relationships all along the years, but nonetheless, at this time, particularly in the last stage, there’s a real push towards reconciliation among many of the prisoners’ families and the prisoners themselves, so it’s very, very important for the families to be able to have time together before the death of a loved one. And in New York State most of the prisons, we have about 61, I think as of today, most of the prisons are far away from New York City and most of the prisoners’ families, practically 90 percent of the prisoners with AIDS are from New York City, so it’s really, really difficult for them to be able to make the trip on a regular basis to visit a loved one. And I think it’s something that’s very difficult for those of us who may not have had this experience to know what it is like. I mean, in New York State, for instance, families arrive at a central location in Manhattan around 10:00, 11:00 at night; they wait for a bus; they travel on the bus the entire night to the next morning; they arrive at the prison around 7, 8:00 in the morning, then wait COMPUTER AIDED TRANSCRIPTION/keyword index Oo was HD Ww 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 285 for often several hours to go through processing - until they get an opportunity to visit the person they're visiting, the loved one, and then at 3:00 they must leave, be rounded up and put back on a bus that arrives in the early morning of the next day. And that’s a really grueling trip. It’s a grueling trip for children, it’s a grueling trip for grandmothers who we have found to be the caregivers often of the children of the prisoners, and it’s just a horrible situation, and it’s unfortunate that the families get so short shifted in our system. I just want to bring another example of what happens to families. There’s a family reunion program in New York State which enables spouses and parents, children and siblings to come visit a prisoner for almost two days. They spend that time in a trailer on the grounds of the prison and they get to cook together and be together. Well, if you test seropositive in New York State, you are automatically denied that visit. It’s a ridiculous policy, it’s a policy that to my understanding the Commissioner is not going to budge from at this point, and it actually does, at least with the spousal visit, just the opposite of what it COMPUTER AIDED TRANSCRIPTION/keyword index 11 No? Oo © SF TD Ww > WG 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 286 pretends to say that it does, which is prevent transmission. The message is all wrong as far as parents, children and siblings as to how HIV is transmitted. I would like to mention and I know you've heard a lot of testimony today in terms of a lack of health care services, of an often sophisticated type of service that’s needed, skilled nursing care, where the outside hospitals will not keep prisoners who are at the final stages. I have on more than one occasion sat ina room with a prisoner who basically couldn’t move from his bed, couldn’t even get a pencil off his night table, who is sitting there doing nothing but watching television all day, and is up on the Canadian border with a family in New York City, and there’s really not sufficient psycho-social services for someone and we have to be aware of this and recognize that the prisoners are not able to get these services inside the prison. Finally, I’m just going to mention that for many stages releasing somebody early will mean saving substantial amounts of money. Unfortunately, COMPUTER AIDED TRANSCRIPTION/keyword index mam ww uw 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 287 in all the five states that I surveyed for this testimony in the federal system, they’re just not doing enough and the savings are very minimal, but I think states could buy into making an argument at least that they could save at least 50 percent of the cost of the medical care delivery of people who are released. I just want to talk about a telephone survey that I did on a number of institutions. I found that very few people out there knew what was going on in some kind of national perspective. In states where there’s executive clemency, the governors are not issuing clemency. Again, the statutes are really being underutilized for people who are sick with AIDS or not being utilized at all. Then there’s temporary release statutes that some of the correction departments have, which sort of let you be able to get a prisoner out of the system into getting some care in an outside hospital or hospice, but in fact it's somewhat short termed and some departments try to push it as far as they can because they have no mechanisms that are available to them to get people out if they so want to. COMPUTER AIDED TRANSCRIPTION/keyword index => Ww wh uw 10 il 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 288 And I think that in New York State we had an interesting situation where we had a medical parole bill that’s been kicked around for three or four years, and it was a bill that would enable prisoners to be released prior to serving their minimum sentence. It’s gone through a lot of revisions. The final revision, we were told this year, if everybody was quiet, we were told it would be passed through on the 11th hour. It didn’t get anywhere, it was an election year and I really think our leaders in the state and federal system do not have the courage to really push forward on the kinds of mechanisms that would enable early release for prisoners. Finally, I have given you some of the recommendations, policy recommendations that I would ask you to consider and make in terms of early release for very seriously ill prisoners with AIDS. I have listed them all here and I would be glad to entertain any questions you have about them. Thank you very much. DR. OSBORNE: Thank you. MR. SANCHEZ: Good afternoon, and I thank you for the opportunity to participate COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 289 in these hearings, and also the fact that this is actually happening and looking at a particular segment of our population that’s overlooked many times, and it’s good to see some familiar faces that I remember from the round table discussions in Washington, so hello. What I would like to do is maybe, because as the last person speaking, I get this feeling that you heard it all and know all the numbers, percentages and statistics and so forth, so let me try to focus in on a few things. At the Commission, I supervised the area of advocacy, and in doing so, the area that we have seen the fastest growing increase has been in prison related complaints, to the extent now that we are about to initiate the HIV prison project that I hope to be heading soon, so there’s a lot of work. I think that in the area of AIDS, doing work in prison is still one of those pioneer type of grounds where there’s still a lot of work to be done. At the Commission, we handle approximately 600 complaints of HIV related discrimination ona yearly basis. And other than--the greater activity other than prison is seen only in the areas of COMPUTER AIDED TRANSCRIPTION/keyword index 12 Oo S&F SN HD We we UYU - S ee ee - WN FF © 15 16 17 18 19 20 21 22 23 24 25 Proceedings 290 employment housing and hospital setting. I think that there’s good reason to enlarge the scope of our discussion today to include all persons being released from correctional facilities, and I say that for several reasons. The number of men and women that are being incarcerated in New York State is staggering, and the numbers are growing and they’re talking about building more and more prisons. As I’ve told you in my testimony, I am an ex-offender, I served about seven years in the New York State criminal justice system, I then worked for the Fortune Society, it’s an ex-offender organization for nine years doing counselor and court liaison type work. I go into three facilities on a monthly basis, two males and one female. I go in to do AIDS-related discrimination training, and what I really do is a lot of AIDS 101 and providing them with the essential and basic information that they just don’t have. There’s a lot of ignorance and misinformation and fear still going on within the different facilities that I go to. Prisoners and ex-offenders are in my opinion two of the most stigmatized groups in society, so what happened with AIDS is you’re COMPUTER AIDED TRANSCRIPTION/keyword index Ww A) 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 291 compounding an already stigmatized group of being an ex-inmate, and so the fears and the stigma make it that much more difficult for a person, and there are Sizeable disadvantages. People are still being released from prison with S40 a bus ticket and the Office of Central Parole where you go and report, and beyond that, there’s really not that much happening for that person, and then also for the family members, we respond a lot of times to complaints from family members of prisoners that are symptomatic or have AIDS, and family members for the most part are uninformed about the prison experience and are worried about people that they have incarcerated. They're almost never informed about the health status of the inmate who is being released into their care, into their home, nor are they involved in any type of way with the post release process or at least the resources and organizations in terms of who to turn to, how to protect themselves, all the basic information that a person would need to deal with that situation. Cathy touched on the transfer, the distance that people who are incarcerated with AIDS COMPUTER AIDED TRANSCRIPTION/keyword index nO UW &e Ww Ww ~J) 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 292 and the lack of access the families have to people who are behind the wall and are like 400 miles away and don’t have the resources, don’t have the means by which to visit that person, so we get a lot of complaints in that area as well. And the issues are and concerns are magnified for Latino prisoners who often lack the ability to communicate their concerns in English and there’s clearly an underrepresentation of bilingual staff within the correctional system. And there is no support systems in place to address the needs of family members for whom English is a second language as well. Persons returning to the community from prison often have been given little or no information regarding AIDS, and safer sex and this places them, I think, at a greater risk for HIV infection, simply because sex and drugs are two of the most powerful attractions for someone being released from prison. I think there’s a pressing need to institute mandatory discharge planning procedures for prisoners with AIDS. The discharge of these inmates, I think, should be as carefully planned as the discharge of patients from a hospital. Yet at this COMPUTER AIDED TRANSCRIPTION/keyword index m Ww NN nn Wm 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 293 time there’s no such system in place. The medical records of inmates are not at their disposal when they’re released, nor are they at the disposal of the New York City HRA, Human Resources Administration, which is responsible for providing suitable housing arrangements at an appropriate level of care for ex-inmates with AIDS. Absolutely no consideration is given to these imates’ illness or need for hospitalization. They are released without consideration for their future needs. Furthermore, the requirement to confirm that an ex-inmate’s housing needs has been suitably met has been relaxed. The result has been that inmates that are HIV symptomatic are being discharged into public shelters in conditions which are worse in many of them than what they left in prison. Public shelters are not being designed for people with AIDS, are completely inappropriate residences for anybody with Symptomatic HIV infection. The Fortune Society found that 99 percent of their clients who reported being released from prison to the shelter system have opted to live in the street, because shelters are more oppressive and COMPUTER AIDED TRANSCRIPTION/keyword index 13 no iW 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 294 unsafe than the prison they left behind and these inmates, like others, reenter society armed only with what the correctional administration has provided them, again the $40 and the address of the parole officer. After release, inmates with HIV infection suffer the same range of problems facing poor HIV infected New Yorkers, but with the added Stigma of being ex-cons. They must rely on emergency rooms for primary medical care and thus are not able to take advantage of early intervention and never experience the continuity of care. (‘That's very important. Post release prisoners must also seek employment and often have a real Shaky housing arrangements or no arrangements at all. Seeking these basics of life, they are very likely to experience HIV related discrimination. HIV related discrimination problems in the parole process have also been reported. I’ve done some trainings also with some parole officers, and it’s just interesting. The stigma that’s attached to AIDS, just so incredible where parole officers feel pressures from their peers as a result of working specifically with parolees with AIDS. COMPUTER AIDED TRANSCRIPTION/keyword index - Ww NN oO uw 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 295 Breaches of confidentiality and other HIV related abuses within the system continue to be reported. However, indicating the need for regular updated AIDS information to be provided to this group also, talking about parole officers now. Following the ex-inmate as he or she attempts to obtain necessary services with little or no financial resources, we see these individuals encountering HIV related discrimination again and again. About 12 percent of all HIV related discrimination complaints occur in the hospital setting and another 98 percent that are reported at the Commission occur attempting to seek government benefits, both likely places for ex-inmate contact. HIV-related discrimination by clinics and drug treatment facilities is also high and many doctors and dentists discriminate against the HIV infected. Add to this the increased discrimination faced by the ex-offender and the scope of AIDS-related discrimination for released inmates becomes clear. Thanks for listening, and whatever questions you may have, I’1ll do my best to respond. DR. OSBORNE: Thank you very much? Are COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 296 there questions from the Commission? Harlon. COMMISSIONER DALTON:. I was struck bring the fact that both of you, Cathy in your written testimony and Romeo, both written and oral testimony, talked about the need for discharge planning. I guess I’d be curious about what kind of discharge planning is done now for any inmates coming out of the New York State system or the other systems that you surveyed, Cathy, and I wonder whether requiring discharge planning prior to compassionate release is a way of making sure it doesn’t happen. On the other hand, obviously, releasing people who have AIDS and who are sick without some kind of planning for their housing, for making sure their medical records follow them, that their families, if that’s where they are know what to do is not a very happy prospect either, so I wonder if you could talk a little more about that. MS. POTLER: Well, in New York State there just isn’t, in New York State there’s not enough discharge planning going on, clearly. People are being released, and they don’t have what’s known as the famous N-11-Q form, which is sort of your entrance into the whole social service agencies, COMPUTER AIDED TRANSCRIPTION/keyword index & Ww KN) ao wa HD WwW 10 1l 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 297 which enables you to get extra money for rent, which enables you to all sorts of human services, as well as Medicaid. So it’s a problem. We're in the process of working with the Department on this, but you really need to have more than just making a form available, you need to have people who can help as people are about to be released, walk them, not by hand, but help them through the system, and this just isn’t being done. In New York City, for instance, we're even finding, I mean, people being dropped off on the other side of the 59th Street Bridge at two, 3:00 in the morning, people who are in wheelchairs being released at ten of five on a Friday afternoon with a call from the doctor at Rikers Island Saying, "What can you do for this person and we also need the wheelchair back, by the way." You know, it’s an enormous problem and I think that while in the New York City system there is more of an active desire to get some of the prisoners who should be released either out on a bail reduction application or on their own recognizance or those who have already been sentenced, to get them out more than any other system that we surveyed. Still, there COMPUTER AIDED TRANSCRIPTION/keyword index 14 > WW ih IH UN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 298 needs to be some money put in by the City or the State to be able to provide the adequate kinds of counselors that are needed to do the proper discharge planning and I think it would be wrong to discharge anyone who is very sick with AIDS to most of the Shelters here in New York City, and I guess that would be true for most major cities in the country. MR. SANCHEZ: Just to add to that, Cathy and I are involved in trying to make that happen. What we did is actually got Parole, Corrections, some community based organizations, we had everyone in one room and the head people of the Division of AIDS Services for HRA and kind of let's talk about this, let's develop some mechanisms; you meet this person and talk and to each other and work this out. It doesn’t make sense for a person--this is an actual call that I received, I was working with this woman doing some advocacy for her, she was incarcerated at Bayview, then was at St. Clare’s, had some issues there, that’s how we initially met. Then when I went to--I would go to Bayview with these presentations, I would see her, she would be part of that group. Parole knew in advance, like three months in advance when the person was going to COMPUTER AIDED TRANSCRIPTION/keyword index nH WwW & Ww WN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 299 be released. Bayview is a facility that’s on 20th Street and 11th Avenue in Manhattan. The Human Resources Office Division of AIDS Services is on 13th street in Manhattan, and why is it that this woman was discharged, I got a call from her on 4:45 on a Friday afternoon, that she was discharged, no plan whatsoever, she was sent to HRA at the last minute, no preparation of the N-11-Q form, nothing, sent to this SRO hotel in the Bronx with crackheads, broken door, sewage backed up, no running water. This is - . the condition that this woman was discharged to. There was no plan. So we kind of like used that as an example. Hey, you need to do a much better job for people to send someone out. No one should live in that condition, but much less someone with twelve T cells. We're trying, but there really needs to be a focus, and I don’t think that necessarily one should replace the other, and maybe have them both going, you know. There has to be a way. Again, going back to the stigma, the only release mechanism that’s available is the executive clemency and the Governor has not issued that to COMPUTER AIDED TRANSCRIPTION/keyword index 4a DD Wl & Ww NO a 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings | 300 anyone with AIDS, but the stigma and the politics behind that, so, yes, there has to be a medical parole bill, I think, hopefully, it will happen and discharge planning should be in place as well. MS. POTLER: I would also like to say that through our program, which is a very modest program providing services for families and friends of prisoners with HIV, we have been able to get a lot of paperwork in place, so it’s not hard to do, it’s a rather easy process, it just needs to have a priority piaced upon it for people to push and desire and want people to get out. DR. OSBORNE: well, thank you very much for your testimony, your patience in coming so late in the day, we really appreciate the input. We have two people who have requested to utilize time on public comment. First, Anna Forbes, and we'll ask if you could keep your comments to three minutes. MS. FORBES: Good afternoon, I want to thank you very much for giving me this opportunity to add my comments to this hearing. I represent Action AIDS, which is a community based organization providing services now COMPUTER AIDED TRANSCRIPTION/keyword index Ww WN 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 301 to 400 people in Philadelphia living with AIDS and HIV disease. We've been offering our services to incarcerated people with AIDS since our inception in 1986 and our staff and volunteers have worked with people in all five of our local correctional facilities. I’m here today to ask you to remember that community based AIDS service organizations have an important role to play in the fight against AIDS on the inside, and actually this is perfect timing for me, because I think my comments here will pick up a number of issues that were just addressed. The Commission by affirming the importance of the role of the community based organization can substantially bolster our ability to do what we do best, provide highly individualized caring assistance to people living with AIDS. We are in fact one more resource that can be marshalled to address these needs. Organizations like Action AIDS all around the country can voluntarily offer a level of one to one attention over long periods of time that medical personnel educators and social workers, no matter how COMPUTER AIDED TRANSCRIPTION/keyword index 15 NO ao im & WW 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 302 dedicated, cannot supply. The resource that we offer contributes in two ways to breaking the isolation that’s often experienced by people living with AIDS. The first way is by giving the incarcerated person someone with whom it is safe, quote-unquote, to discuss AIDS. People on the inside often feel they can’t talk about the diagnosis with anyone other than medical or social service staff whom they often see only very briefly, an AIDS buddy or case manager from a community based organization gives the individuals someone with whom concerns about AIDS can be discussed at length. The second way in which we assist in breaking isolation is by helping family members on the outside to understand what an AIDS diagnosis does and does not mean. Family members sometimes shy away when an individual is diagnosed. Their own fears of infection or misinformation about AIDS can make it hard for them to continue to offer support to the incarcerated person. Because AIDS service staff and volunteers can establish contacts with both the individuals on the inside and the family members on the outside, they could help to maintain relationships during this COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 303 very difficult period. In addition to providing the desperately needed support to people during incarceration, AIDS service organizations are often ideally situated to assist paroled individuals and this is the topic obviously that was just being discussed. People with AIDS frequently need immediate access to a whole range of AIDS specific services. Just a few of the questions that our case managers ask people with AIDS who are being paroled include, "Where are you planning to get your medical care and how will you pay for it?" Newly paroled people with AIDS don’t necessarily have a lot of time in which to get a doctor lined up and a medical assistance application in process, because of course a medical crisis can hit at any time. If you’re a newly paroled person with AIDS, where will you live; will your family let you move back in; do they know you have AIDS; are they prepared to deal with it; do they have the support and the basic infection control information they need in order to live with you comfortably? If you have a drug habit and have AIDS, it’s extremely dangerous, obviously, to resume drug COMPUTER AIDED TRANSCRIPTION/keyword index no wm & Ww N 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 304 use. Have you arranged to get yourself enrolled in a drug treatment program; will you actually follow through with the treatment plan; will it help to have a buddy while you're going through this to make sure you follow up on your intention to get into treatment? These are a few of the issues that we can address with individuals with AIDS who are coming out on parole. We have found that our staff and volunteers can be immensely helpful in resolving these concerns. In fact, one judge stipulated maintenance of contact with Action AIDS as a condition of parole for a of our clients. Given that the benefits of involving community based organizations in programs designed to address the needs of incarcerated people with AIDS are fairly obvious, you may wonder why I came today to recite them to you. The reason is that in order to take this role AIDS service organizations first need to be allowed access to people in prisons and jails, and this in our experience has been a tremendous stumbling block. No one, as you know, can be admitted into a correctional facility without consent COMPUTER AIDED TRANSCRIPTION/keyword index > Ww nN Oo Oo wa HD WA 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 305 of the administrators. In Philadelphia we’ve been fortunate in that we’ve had a high level of cooperation with the Philadelphia prison system staff, but other organizations in Pennsylvania and around the country have not had the same level of cooperation. The adminsitration of one of the correctional facilities to which we sought access told us they had no residents with AIDS, but they would notify us as soon as they did. We called back regularly every month to see if our assistance was needed, then they started to tell us that they had in fact had residents with AIDS, but those people were either all released or had died. Clearly, we were experiencing an access problem. DR. OSBORNE: Let me ask you to finish up fairly quickly, if you can. We are getting short of time. MS. FORBES: I wanted to say, really, my point is I wanted to ask the Commission to recommend specifically that directives be issued both at the federal and state level directing prison | administrators to make contact and establish a COMPUTER AIDED TRANSCRIPTION/keyword index 16 me WW NI oOo wo -~I 10 1i 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 306 working relationship with their local AIDS service organization. We found in Pennsylvania that we were successful in getting the Pennsylvania Department of Corrections to issue such a directive. We feel the access problems we’re facing really cannot be overcome without an explicit directive to vrison administrators to establish that contact. Thank you very much. DR. OSBORNE: Thank you. That’s a thoughtful comment. We appreciate it. The other public comment will be coming from Judy Greenspan. MS. GREENSPAN: I'll make it really short, because I’m probably almost as tired as you are. I know there‘s been a lot of discussion about testing and segregation, and I just wanted to be very concise and ask something of you. It would be very helpful in the correctional system if you came up with recommendations specifically dealing with HIV testing and segregation, and I would propose that you come up with guidelines that suggest to all correctional systems that there not be any mandatory _HIV testing, that the only testing be voluntary, COMPUTER AIDED TRANSCRIPTION/keyword index > iW Nh na Wn 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Proceedings 307 accompanied always by pre and post test counseling for people who test positive and negative, and I would call your attention to a very excellent study that was done by the Oregon Department of Health and the Oregon Department of Corrections and it was reprinted in the American Public Health Association Journal, "Testing for Prisoners: Is Mandatory Testing Necessary," and you may have copies of it, but I think it would be very, very important. As far as segregation is concerned, just to clear up any ambiguities, we would propose that the ACLU National Prison Project would propose that . there not be any segregation, and I know there are some terms thrown around, "medically indicated segregation," that type of thing. There really is no such thing as "medically indicated segregation." There is medically indicated hospitalization for sure for people who are sick and we would advocate really that HIV in prison be treated the same way as it's treated on the outside. We don’t segregate people on the outside, we shouldn’t segregate people in prison. If someone is sick, they should be able to go to a hospital _ where they get competent care and when they finish COMPUTER AIDED TRANSCRIPTION/keyword index 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 295 Proceedings 308 with their bout of whatever it is, that they be returned to the prison population. Of course, this is going to take education for prisoners and also for staff, but we believe that the only rational policy is no mandatory testing, and no segregation. DR. OSBORNE: Thank you very much. And thanks to all of you for your attention and I think it’s your turn to declare this closed. MS. BYRNS: I declare this closed. We’re adjourned. (Time noted: 5:15 p.m.) COMPUTER AIDED TRANSCRIPTION/keyword index