10 11 12 13 14 15 16 17 18 19 20 21 22 23 NATIONAL COMMISSION OF AIDS = Working Group of Social/Human issues Westin Hotel-Copley Place Boston, Massachusetts February 16, 1990 COMMISSION WORKING GROUP Scott Ailien, Chair Harion L. Daiton, Esq. Eunice Diaz, M.S., M.P.H. Donaid S. Goluman, Ese. Larry Kessler MEETING FACILLITATOR Mare J. Rovoerts, Ph.D. COPLEY COURT REPORTING 101 Tremont Street Boston, Massachusetts 02108 (617) 423-5841 COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 PARTICIPANTS Ms. Rona N. AfFLounado- Executive Dizector, Community Health Project, New York Hortensia Amaro, Ph.D.- Assistant Professor, School of Pubiic Health, Boston University Mr. Walter F. Batchelor- Director of Research, John Snow, tinc., Research anu Training Institute; Member, American Piychoiogical Association Mis. Mindy Domp- AIDS/HIV Educator, Pittsfieid, MA Mr. Eric L. Engstrom- Executive Director, National AIDS Network, Wasninygton, D.C. Marshall Forstein, M.D.- Outpatient Psychiatry, Cambridge Hospital Jackie Gelfand, H.A., M.F.C.C.- ATS Preject Manager, Los Angeles Gay & Leswvian Community Services Center Alan Hinman, M.D., M.P.H.- Director of Centers for Prevention Services, Centers for Disease Control Wayne Johnson, Jr., M.S.P.H.- School of Pubiic Health, University of South Carolina, Columbia Mr. Jeff Levi- Consuitant, Washington, D.C. John F. Mazzuchi, Ph.D.- Office of Assistant Secretary for Heaith Affairs, Departinent of Defense, Washington, D.C. Jim McEvoy- Representative from the National Association of Peopie With AIDS Alvin Novick, M.D.- Professos of Biology, Yale University, Mayor's Task Force on AIDS, New Haven, CT Joseph O'Neill, M.D., M.PLH.- Chick Medical Director, Division of HIV Seivices, Health Resources and Services Administration Alonzo Plough, Ph.D.- Deputy Commissioner for Public Heaith, City of Boston Ms. Marie St. Cyr- Executive Director, Women and AIDS Resource Network, Brookiyn Ronald St. Jonn, M.D., M.P.H.- Nationai AIDS Program Office, Department of Health and Human Services Mr. Romeo Sanchez- Human Rigats Specialist, New York City Commission on Human Rights COPLEY, COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 PARTICIPANTS (CONTINUED) H. Denman Scott, M.D.- Director of Health, Rhode Island Department of Heaith, President, Association of State & Territorial Health Officiais Peter Smith, M.D.- Department of Pediatrics, Rhode Island Hospital, Providence, RI Jill Strawn, R.N., M.S.N.- Director oz Agency Outreach, Community Health Education Project, New Haven, CT John W. Ward, M.D.- Special Avsistant for Science (HIV), Centers for Disease Control, Atlanta, GA Mr. Bob White- Deputy Director, BEBASHI, Philauwelphia, PA Mr. Wayne S. Wright- Excuctive Director, Multicultural AIDS Coalition, Boston, MA COPLEY COURT REPORTING SPEAKER Marshall Forstein, M.D. AFTERNOON SESSION Commission Working Group Meeting COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 CHAIRMAN ALLEN: Marshall Forstein is going to snare with us some testimony, trying to help us out with the psychosocial issues. Marshall, just go ahead and syeak from there. DR. FORSTEIN: Thank you. Let me know if you can't hear me, Thank you for inviting me to participate with you today. I've been told to do in about ten or fifteen minutes the whole psychosocial continuum. So let me be specific in some ways and general in others to set a kind ci tone. I would like to suggest that first of all the place of psychosocial needs that's plagued in the AIDS epidemic has been underexanined, underresearched. There has been a kind of second-class citizenship to the mentai heaith personnel, support services, community resources that have really, from my point of view, sustained any intervention and treatment services that people with AIDS ana HIV infection have had. So my bias as a psychiatrist will come quickly through my discussion this morning. COPLEY COURT REPORTING i 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 iI think I want to talk about both psychological concerns and pragmatic concerns and how they intexrface with cach other briefly. There are a couple of basic concepts that I think are underlying our discussion, One is that as human beings there is a lot of evidence now both eee biologically and psychologically that we don't eens — function real weil over the long haul; that we are really more crisis-oriented, Baby Jessica Syndrome sort of is our forte. We treat the baby TT ener erences eel in the well but not the hundred thousand kids who are starving On a chronic basis. Our piological Systems are really geared that way. | When we have a crisis our adrenaline rushes and we are great until we accommodate to this level of adrenaline. That confcrms, ina sense, how we respond to aspects of the epidenic as a care provider group. But it also conforms to how individuals respond to changes in their environment; such as psychologically, when they hear the news of an HIV poSitive test. We have to distinguish between acute and chronic psychological and social responses to information that people acquire somewhere in the spectrum. COPLEY COURT REPORTING on, The otner thing iss that for individuais it is very hard to tease out Knowledge and intrapsychic motivation and defenses against that meaning of knowledge in their lives. We cannot extrapolate from one group of people to another that the way people manage information is necessarily the same. So when we look at what testing means in @ white middle-class gay male community, which nas a very different environment, social structure, Support system, to an inner city black or Hispanic community, the research data is essentially useless to making really valid generalizations or recommendations avout how we should then mobilize resources, I think there has been a real need to look at the difficulties in studying the meaning cf the disease and testing the population. Likewise, when we hear aoout women who are infected who have had children and have a secona child, how do we begin tc understand the intrapsychic or the psychological meaning of disease in peoples' lives because that's what makes people do what they do, not the knowledge COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 that they have about early intervention or what the test really means today or what it will mean in five years. There has been a Kind of frustration on my part that because the psychological component of peoples' lives is so complicated that we tend to simplify our response to the crisis py underplaying its importance, Let me give you an ecxample. We Know that certain people after they get tested noovilize er PT On Ot ene renee ane: their behaviors because of the test. fle also ee ee arena esa EE know that the people who are able te do that were eee eS ee probably more able to mobilize their oehavior . ae eee ee —O—OO—O—O—“‘“C —_ Change before the test and that the test was ~~ oo a really culminating a series Of psytnorogical - ees Re ee rere me steps that led them to that capacity. Se ee Well, one of the things that go into mobilizing information in what we mignt call a pro-life, I hate to use that word, a positive life force, a future orientation, and I think that we really have to look at a serics of psychological substraits, One is the capacity in people to believe that they have power to do something witn the information that they gather, and that will obviously vary according to COPLEY COURT REPORTING peoples’ perception of access to care, access to pay for the care, and whether that in fact is going to be guaranteed over the long haul. If you think about the HIV continuum, it's possible for somcone to ¢et anonymously tested and then maybe have ten to fifteen years o£ but that doesn't asymptomatic iife, mean that there aren't severe disabling psychological components to their life that in fact woula be much more expensive to treat with the knowledge that they are positive than that they might be positive negotiating the daily needs None of the research with the apprehension and going on of their lives. data looxs at people. _ who are tested more than a few a eee don't have data, _ people four, eee pike. years out. We for instance, what happens to five, Six, seven, ten years down the a) i The analogy I would like to use is for —— \ those of you who have been on diets pwefore, we a meee DS are essentially asking people to go on a diet ana — ee “wever cheat for their entire iize. Unlike a —_—— ee diet, cheating may oe lethal. If you gain a few mo pounds, you can undo that damage by losing a few eee smoking you can regain your 74 pounds, If you stop — COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 10 cardiovascular condition, But the real terror in peopies' lives that is integrated into the fabric of how they respona to the knowledge of their Seropositivity is that it has an acute phenomenon and then it gets changed over Cime. So in my clinical work, for instance, there are Significant numbers of peopie who find out that they are seropositive and ao very well. They mobilize resources, get their pnysician on board, go into trials, find out, read more about AIDS than I have. Then @ year later they become depressed because the magical thought that somehow what they have done will now rid them of this disease confronts them head on. epressiert is a major mental iliness in this country that effects all socioeconomic stratum, males and females. It's the undertreated illness of our society. 20 percent of Americans will have major depression in their life. Only 2 percent of those people will be treated adequately. People who are at risk for HIV we know nave a much higher incidence of depression, anxiety disorders, panic disorders, COPLEY COURT REPORTING 10 11 12 13 15 16 17 18 19 20 21 22 23 24 all sorts of adjustment aisorders. And some research now shows that people with HIV infection have more psychological impairment than people with AIDS/ARC. There is something about the uncertainty of one's life, the unpredictability of the course of the illness that makes it very adifficult for people psychologically to manage not necessarily in the acute phase wut over the long haul. So the kind of continuum of care we're ee —— talking about has to envision a changing need in ee an individual and in a conmunity from the ean on beginning of the awareness of testiny and its ee implications throughout the process of trying to TT access care, maintaining what I woulia cail a TT positive future orientation. ————” Oe Lf we in fact encourage people to test and the first two years they do better and the next C€ight they do worse then they might have done by not testing, then what have we accomplished? Ana if in fact someone iS Seropositive, we then have to go the whole oute of assessing inmunological status, besides the access to care, the cost and all of that. COPLEY COURT REPORTING What do people need psychologicaily to manage the day-to-day awareness that they are now part of a health care sysitem for maybe ten years, but they are not sicx? What motivates people to stay -- how many of you go to your cardiologist gist because your heart feels great? We have to look at how people utilize health services, what gets them into them, and what maintains peoples' diets. What is going to keep people psychologically prepared to not just treat the baby falling in the well, but the kids who are starving down the block? And if you turn that in terms of the individual, how do peopie maintain a long-term positive view of their own life? Now, I think there are some psychological things that contribute to this. One is that there is a direct corrolation between self esteem, empowerment, and the capacity to maintain what I would call a future orientation, even in the face of potentially dangerous information. think we cannot talk about HIV positivity, testing, and the emotional needs without looking at the underlying social conditions that are part of peopies' intrapsychic fabric. When I'm COPLEY COURT REPORTING talking to a young black male in Roxbury, and he's teliling me that he's more afraid of being shot than of getting AIDS, that's part of his psychological makeup that informs the kinds of behavioral changes that he is able or not able to maintain because sexuality and drugs we know are extraordinarily effective anxietal lifts. We use them to reduce anxiety. So .if we are going to asx people to participate in a continuum of care, to gather information about their life which makes them more anxious, we then, in order to prevent the behaviors which transmit AIDS from becoming iaore intensified, we have to provide care that reduces peoples' generalized anxiety avout their lives. And that is why I think we haven't been able to pay attention to the psychological needs because we can't talk about testing without talking about violence, poverty, day care, mother/infant mortality, and all those issues. I think our own anxiety around the table is probably rising as we throw back into the hoop all of the social dilemmas that confront us. Just a couple of pragmatic issues. Once COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 we test people, it Scems to me we have an ethical responsibility for following through to the matural end of the meaning of that test. For some people, testing will lead to positive changes in their lives; to some lives it won't, Are we prepared to provide the psychological mechanisms to support people over the long haul? I say this with a great deal of cynicism, as in my own state mental health service is being cut back to the point where they are going to be essentially non-existent in any meaningful way. The mental health cost of crisis intervention, long-term care, in different kinds of communities who have different perceptions of what mental health means in their community, has got to be looked at, and I think has got to be a major focus if testing is going to have any real value in forestalling the epidemic, if that is the purpose. The otner issue is just because people have access to care, assuming that doesn't mean that they are able to participate in it. I have had a number of people who have done all the right things based on all the right information, COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 15 and a year into their AZT are unable to continue to take it because the meaning of it on a daily basis is that they are facing their mortality in away that they are not psychologically prepared to do. I think it's very hard to tease these things out. The other thing I'll Say is tnat from a practical point of view, we have people who come, decide to get tested, and then appropriately realize that, they do that anonymously, but then appropriately realize they have to go the next step to immunological status. So they go and get their T-cells tested, Who pays for that? Lf they put it on their insurance, they are asymptomatic, they may be fine as long as they hold their present jobs. We are £inding out that premiums on people who get T-cells tested are going up. We are finding that people are being denied individuai group policies because the insurance has paid for an T-cell test. Well, we don't need to £001 insurance companics,. They are not stupid. They know that people wno get T-cell tested in 1990 are at risk for HIV. What are we going to do in terias of COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 16 guaranteeing that people have access to care and the ability to pay for it? If we have gotten somebody into carly intervention ana they lose their insurance three years down the line, what about the ethical responsibility to continue to provide care for people over the long haul? I think especially as we move towards earlier intervention, we are really increasing the latency period of when people are going to be needing surveillance for their HIV status, intervention, and then treatment in a more severe form. Lastly, I want to bring up the notion of Suicide because this is not weli-researched or documented. There are some studies that have thought that the increased incidence of suicide in people with AIDS, overt AIDS, is probably secondary to organic deliriums and the desire to end extraordinarily painful situations. We need to distinguish between the wish to end pain and the wish to end life, on the terminal end of the spectrum. But early on in the course of HIV infection, the need to have power over one's life is often expressed in terms of suicidal ideation, COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 17 which is very common in people with any chronic iliness. There seems to be a much higher incidence of suicide completion in people who get tested who don't have the resources to help manage the information over time, and those suicides do not occur necessarily in the acute phase of testing. So that research that looks at what happens in the first five weeks of testing may not pick up what we have seen f£rom some army studies that the incidence of suicide increases more towards the 6- or 12-montn period of time, when again this notion of magical work that I've done is not going to prevent me from being ill. So long-term studies around suicide and how it's managed is very important. From my perspective, it seems to me that if we are advocating testing for early intervention, carly intervention has to include mental health intervention because to separate that out is to put people, I think, at higher risk for Significant psychological morbidity. Let me stop there and lastly just say I think one of the biggest issues we're facing is COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 that mental health care in this country generally is underfunded, underpaid for, $500 in Massachusetts is what you get for the year from Blue Cross. Most insurance companics may be up to a thousand, and that does not go far enough to pay for basic mental health services, I think there is clearly a problem in the community mental health centers where mental health funding is totally inadequate for present situations, To add AIDS is to quickly overwhelm a system that is not prepared. And additionally, having money to train people in the specific issues around HIV mental health issues is not forthcoming. I see that as a real issue, The last thing is that self esteem has to do with whether you believe you're wanted in this world. When your government Says you are lllegal, immoral, you are not entitled to the same rights and privileges as other people, you cannot develop healty self esteem. The psychology of depression for people of color, for gay and lesbian people, for people with disabilities, has got to be addressed or we're dealing with a psychological phenomenon that is 18 COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 19 larger, I think, than a specific program can manage to make up for. CHAIRMAN ALLEN: Thank you. Any questions? MS. AFFOUMADO: I want to say bravo. (General applause). MR. LEVI: It was wonderful, Marshall. I just want to add one thing for the record because I'm not sure that we are going to be discussing this here, and I think it's important, though, that in considering these issues that the Commission at some point address the issue of third-party payors and, particularly, private inSurance conpanies,. And I can't underscore strongiy enough what Marshall said about the risk, the jeopardy vee, people place the in once they are enteread into the health care system; that we realiy have ee only resolved the very first piece of carly intervention and protecting peoples’ third-party payor rights, and that's through anonymous testing where it does exist. And ne's apsolutely correct about once the T-cells are in peoples' 1 what could be the mass effect of Something like 2 | this if it were to go to the public, general 3. public, such as the previous messages that we've A had through the campaign? 5 DR. FORSTEIN: My biggest fear wiil 6 be that you will get people -- first of ail 7— 7 think we're overestimating the oower o£ the 8 government to tell peopie how to live their lives 9 anyway. Even the Public Health Service putting 10 out this directive showing that you should get 11 tested, I'm not as worried about the impact o£ 12 that as maybe most people are. But for those who ® 13 do, I think the dangers are real. hh, 14 I think that the people who want to do the 15 right thing and then find that there are all 16 sorts of reasons why they can't get the early 17 intervention treatment, nobody is going to cay W 18 for it, that their families are going to be 19 ostracized, that their children are going to pat 20 identified as having to be tested, it's a 21 Spiraling effect. F thitin we axe going to see a a 22 psychological fallout that is much greater tnan nN © 24 system that is not capable of mecting the present eee _ COPLEY COURT REPORTING i ee es 32 —_ 1 needs of Americans. ae 2 There is going to be damage. To what 3 extent? Even if it's 2 percent, if you take, you 4 go and test 50 million Americans and you have 2 5 percent who are going to have some acute untoward 6 sequellae, that is a significant blow on an 7 understaffed, underfunded mental health system. 8 I think I wouldn't be surprised if we see an 9 increase in simple dysfunction, which shows up as 10 job problems, unemployment, people taking sick 11 time. The cost of it is, I don't know how to 12 begin to estimate it. I think we have enough © 13 data to suggest that without the access to 14 ongoing care, the damage will be worse, even with 15 the best system in place. 16 Let's not be naive about this. There will 17 be casualties of war, ina sense, even if we put 18 in the best possible mental health system because 19 of what some of the issues are that Gone people 20 can't make use of. Ethically, from ity 21 perspective, we have to have things in place that 22 allow peopie access to the treatment they need. 23 MS. DIAZ: From your mental health @ 24 perspective, how could the need of informing COPLEY COURT REPORTING 10 li 12 13 14 15 16 17 18 19 20 21 22 23 24 33 people that there is a test available, how coulda that pve reframed so that individuals would know where to go for the next step? Might that be a message indicating that they shouid enter counseling or seek out a counselor? DR. FORSTEIN: Absolutely. I think anonymous testing sites are being advised to spend less and less time with more people. Twenty minutes of pre-counseling is not sufficient. I wrote the program for Massachusetts. It was a half hour. I regret the day I wrote that. My learing Since then has tola me that you cannot ina half hour cover the details of the test much less the long-term ramifications. I think if we are going to advocate that people get tested, we have to look at early intervention psychologically as just as legitimate and provide them. What we have devised here in Boston is the recommendation that people understand what they need to manage the information, decide if they have that in place or not before going to get tested, and, if not, perhaps to work towards putting that stuff in COPLEY COURT REPORTING 34 1 place before. I think ethically we anced to teli 2 people as we do with a surgical procedure that 3 HIV testing is not @€ benign procedure, that it 4 has long-term consequences as well as short- 5 term, and people need to realize that there is a 6 potential for long-term psychologicai cffects. 7 I do not think that HIV testing is benign, 8 even though it can be very helpful for testing. 9 And we need to see it as intervention tnat 10 carries with it the same Kind of potential 11 untoward effects as telling people you cniy have 12 a 3 percent chance of dying on an open-heart 13 surgery table, but it's a3 percent cnance. 14 People who are in mental hospitals, people 15 who are wards of the state, people who are in 16 acute medical crises, people who are in addiction 17 treatment centers, now do we begin to estimate 18 what informed consent is in people who are 19 already feeling psychologically strescea? I 20 don’t think someone in the middle of aadaictron ——. 21 treatment can give informed conscntapout _—_———___ 22 testing. When the test is done is almost as 23 Gmportant as whether it's done, now it is done. 24 CHAIRMAN ALLEN: ,One of the COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 22 23 24 35 questions I have is the issue of dimentia, and something we need to look at and I would like your inSight into that progression. To the individual, I know that many people that I've talked to say I don't mind dying, it's just I don't want to lose my mind, that fear and that anxiety and that slowness of the progression, and the markers that frighten people and all of that. ~ t Could you address some of that? lH DR. FORSTEIN: Sure. Again, I think it's difficult to separate out the individual psychological response from the context that the person perceives he or she is living in. As an example, I think since HIV tends to strike mostly young people who are not accustomed to thinking about losiny their mind, it raises terrors that developmental periods of time would normally begin to prepare people to accommodate one to the realities of the world. But that is in a social setting in which we as a nation have abandoned people in their elderly years. We overmedicate people instead of treating them for COPLEY COURT REPORTING mild dimentia, so that people who are young say I have seen what my grandmother has gone through, [I know she's not well cared for in the nursing home, I'm not going to get that dependent. Our culture has said it's okay to be dependent as an infant, but not at the other end of life. There are strong prohibitions about dependency, about losing control over one's life, and personal reasons for not going into a nome, like wiping out your family's resources, Tnaere are many reasons why people would prefer to end their life prematurely. I thin« that's complicated by the real fears people have of losing cognitive function, That is terrifying. I can't say it any other way, but it's Simply a terrifying experience for any human being to find they are loSing control over one's life. CHAIRMAN ALLEN: Do you find that in increments, in the physiological station of the dimentia? DR. FORSTEIN: Yes. CHAIRMAN ALLEN: In that progression, the intensity of that, what happens COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 37 to the individual? Do they disengaye from life? DR. FORSTEIN: It's variable. i think unlike Alzheimer's disease, many people with Alzheimer's get very anxious about the diagnosis, have a period where they are disturbed by it, but because Alzheimer's quickiy damages cortical functions the patient often becomes unaware of their own environment. This is a far more disturbing disease for the family than it is for the patient, It's far more disturbing emotionally for people who care for Alzheimer's patients than the patient itself. With HIV dimentia, in those in which it develops slowly and chronically, people maintain high levels of intellectual function, although specific areas of cortical involvement, including good memory, slowness in thinking, cnanging sets from one kind of discussion from another. But the person is often mostly aware that this is a Slow degenerating -- it's like watching someone chop off a finger and then another finger, but you know what's happening to you. I think that's a much more terrifying situation. Again, medical problems intervene and COPLEY COURT REPORTING ee ee ee, 38 _ 1 precipitate changes in the cognitive impairment, bd 2 too. So it's unpredictable. 3 I think another issue is that most people 4 ago not have access to psychiatrists who can, I 5 think, medicate and help with the dimentia. 6 There are things we can do to forestall the 7 dimentia and to make people work at a higher 8 level, but the access to that care isn't 9 forthcoming as well. 10 And lastly, I think there is a real clear 11 | message from society for people who have HIV 12 infection that if we are not taking care of them © 13 really in their best state, what can they expect 14 us to do when they are impaired. 15 CHAIRMAN ALLEN: One of the 16 concerns that I have, especially around the 17 testing issue, one of the arguments, and you get 18 down and dirty here, is because you need to test 19 certain occupations due to the dimentia. I would 20 like for you to address that. 21 But there is also the other side of an 22 individual that is into denial or at least living 23 with the secret agony of this progressive loss © 24 due to the fact that I'm scared I wiil lose my COPLEY COURT REPORTING job, even if i'm protected to a certain degree. Of course, you have the bona fide job qualifications and the law, and so forth; that that's frightening as well. But I would like for you to address this mentality of testing for protection xvather than prevention, actually. DR. FORSTEIN: I think you are raising what has been an ongoing debate for a few years now and carries much emotional baggage with it. There are some very good studies that have Shown over the last few years coming out of Los Angeles, Chicago, New York, that when a person is HIV infected, we used to think that carly in the infection there was a higher incidence of cognitive impairment. Now, the neuropsychological studies that corrolate cognitive functioning with immunological status, T-cell leveis, and basic neurocognitive motor tasks, have shown that when somebody is immunologically competent, meaning until the T-cells are probably below 400, there is very little likelihood of HIV dimentia. It doesn't mean it can't happen, but it's much COPLEY COURT REPORTING 10 11 12 13 15 16 17 18 19 20 21 22 23 rarer. In fact, the notion that 10 to 20 percent of people when they got infected wouldn't have cognitive problems right away is probvabiy not going to be borne out. I have seen patients with T counts of 800 who have cognitive impairment. It's not clear whether is that HIV, is that the pre-existing drug history, is that brain damage. Most of the people we test, we don't have base line data from five years before they were infected. But even in the sample, with the history of drug abuse, people did not show up to have Significant neurocognitive involvement until they began to have more immunologicai decline. Now, it seems to me that there is a aifference between screening for HIV and helping people to create job performance sercening. When I'm f£lying on an airline, I would prefer to have my pilot have to do a performance evaluation on the plane than what he does on a paper test in somebody's kitchen. He is not going to become demented and fly. I'm not worried about that. He might become drunk and fly; that i'm worried about. Or he might have had a fight in the morning with somebody who cares about hin. That COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 I'm worried about. But I'm not worried about acute dimentia. That's not how the process works. I'm much more concerned about jobs being able to monitor peoples' performance according to criteria that makes sense, Instead of drawing HIV tests on school bus drivers, we should do breatholizer admissions. That is a performance monitor of something that is important. So the test itself is in no way, I think, helpful in discerning whether or not people have consequences of HIV infection. I think the fact that HIV is in the brain probably early on does not mean that it's clinically relevant to performance impairment. So I would like to distinguish between neurocognitive testing, not knowing what the base line is, and also what we know about in terms of performance criteria for people accomplishing certain tasks, HIV testing doesn't accomplish that. CHAIRMAN ALLEN: That's very helpful. MR. GOLDMAN: You would agree that 41 COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 in the context of paid blood donors, that would be an appropriate employment screen? DR. FORSTEIN: Absolutely. You call it employment. MR. GOLDMAN: If somevody is paid for it. DR. FORSTEIN: I think what we're screening blood for is very different from screening airiine pilots to see if they could fly. We are testing for the virus, not for joo performance, CHAIRMAN ALLEN: I wouid like to bring in Mare at this point. Thank you very much, Marshall. I'm pleased you're going to pe able to be here through this conversation. The Commissioners have talked to Marc about something that we would hope to get out of this day today is to looking at that kind of continuum of care and the patterns of needs and to look at this not in a compartmentalized Situation but to look at it as a whole entity of this progression through the process from the individual, perhaps, from the individual's point of view and how that individual interacts with 42 COPLEY COURT REPORTING the social structures. So it would be helpful For us. That's just a jumpoff point. What we would like to come out of this with is to get an overview and clear picture of tais whole process from the beginning to end, if possibile. Fox instance, one of the issues that came up when Marshall was speaking was what about the anxicty level of an individual, when does that override the anxiety of finding out that they may be positive? How do you interact with someone through basic education to sensitize that individual to the possible need to go for testing? And sensitize the individual to what the test means and so forth, as you are doing it all the way to the final stages. So that's kind of a hope. Some other Commissioners may want to speak up to some of their desires in this. MR. GOLDMAN: The only thing in that context, we ought to make it clear, as I understand it, we're talking about the psychosocial continuum, psychosocial needs, that we're talking about the person who is, who we're COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 44 talking about being tested, who we're taiking about being treated. There may be a whole different set of needs for the members of that person's family, seronegative sexual voartner of that person, with other people in the community with whom that person may deal, and a whole different set of psychosocial issues. I don't have any problem talking about them, but we ought to be clear when we're taiking about psychosociai needs and concerns as to whose psychosocial needs and concerns we're talking about. CHAIRMAN ALLEN: Okay. Any other comments? Do you all have a clear goal or desire? That would be helpfui to us. DR. ROBERTS: I thought we would start with a slight expansion of what Kate [Cauley] suggested, who is no longer with us, but suggested yesterday toward the end of the session where she talked about how testing was an intermediary point in a continuum. And we had been talking both about various outreach mechanisms that brought people in to testing, and various cominunity education and prevention COPLEY COURT REPORTING efforts which were not necessarily tied to testing. And in keeping with what Don just said, both for people who are positive, you find medical and psychological, which we've just talked about, and social and prevention sorts of things, and for people who are not positive, either contacts or individual prevention. And Deborah Cotton yesterday talked about particularly the continuum of medicai care and at what point it made sense to Switch people among various sites and circumstances of care. I want to say two things I heard in our conversation yesterday that I want to offer to all of you aS some feedback as we proceed this morning. One, I sense some unwillingness for some of you to disagree with each other. There were some real disagreements, and interesting ones yesterday, but there is a little bit of a reluctance to disagree because tnere is the Commission and here you are, and you're all trying to influence them. And there is some sense of wanting to maintain a united front in the face of the Commission. COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 it want to urge you where you really disagree to expose those disagreements to the Commission because I think it will we more helpful to them to see the variety of opinions and perspectives in the room. The other thing that I urge is, I think it would be more helpful if we tried to stay more focused on one thing at a time. I know it's very tempting. There are eight things I want to say to the Commission and I have air time, out i think it would be more helpful to them if we stay On one topic at the time because there's always the possibility of written admissions and other arenas in which you can submit your views on. I have been told both that some people Feel that some peopie talk too much and they haven't gotten enough air time, and other people, including people who talk a lot, who feel I've been too controlling and not letting them have enough air time. We have a broad spectrum of responses about how we ought to modify what we do today. I thought that just to begin, we could Start thinking about this continuum and begin to COPLEY COURT REPORTING talk about the question of whica of these things are we doing relatively weil and badly. In terns of providing -- and on this part here, we talked about cas@ management, team management, the fact that this is a multifunctional sect of interventions and assistance that's needed ail the way from group support to finding people money, whatever it is. I wonder what peoples' reactions are as you think about the spectrum of services that people at different stages of the disease need and different client groups need, as Don said, What should the Commission hear about where the real priorities are, the real problems? MS. GELFAND: I think one thing that really needs to be taken a loox at is the Fact that testing has always been scparate and apart from anything to the right of your littie squiggle there, scparate from the medical, the psychological, the social, whatever, separate from the outreach and the education and prevention, there has been this testing. Ana [I think that we really need to look at testing as COPLEY COURT REPORTING an entry point into that whole system to the right and stop separating it out, stop separating the services and the people who are aoing it and the agencies who are doing it. I think the agencies can connect in a much better way than they are in each city. DR. ROBERTS: Say more about this connection among agencies. MS. GELFAND: My own personal example is we are dgoing testing and beating our heads against the wali because we can't outreach to communities of color. I think it's a wonderful idea because the AIDS Project is going to be testing. instead of our agency getting all uptight about it being taken out of our hands, we need to allow that to happen in different places in the city and not just take it ail on ourselves to be the end all. AIDS Project-Los Angeles is talking about putting case managers in alternate test sites. I'm not entirely sure I think this is a great idea, but the idea of working with AZDS Project- Los Angeles instead of against them or in competition with them needs to be locked at. COPLEY COURT REPORTING 4g & 1 think that's what brought up the corroboration 2 effort. 3 DR. ROBERTS: I hear you saying 4 something that I neard some of yesterday that the 5 | I thought we were sort of wandering around a 6 little bit; namely, that as the epidemic shifts, 7 the nature of the agencies and kinds of voluntary 8 groups that need to take the leads shift, and 9 that one agency that can function in a gay 10 community can't necessarily operate crfectively 11 in communities of color. 12 MR. LEVI: We almost necau sonctning ® 13 added to that chart. I think wnat Jackie said is 14 really accurate, that we've dealt with cne side 15 and not the other. But there is a reason why the 16 testing originally was placed outside the ee a 17 traditional system. And it is ooth an obstacle a eS 18 to people seeking testing, but it's also an 19 obstacle to people seeking the related care that 20 they need, and that is the insurance issue we 21 talked about, the issue of mandatory reporting, 22 the issue of partner notification, assuming ali 23 those things were in place, which they are not, © 24 on both sides of where testing is. COPLEY COURT REPORTING There are other obstacles that society, government, the economy, or whatever, have placed that prevent dealing with this issue ina rational way. It is not irrational for someone to seek testing outside of the care system if they think they are going to lose their job or their insurance or whatever. Ana so society or the government or whatever needs to do something to rationalize the process. DR. ROBERTS: So if we are going to Satisfy Jackie's concern, there are other things that need to be done to allow this to happen in the real world. MR. LEVI: Yes. MS. DOMB: One thing I would add, Following that, in terms of what needs to be done in the real world, in areas you have physicians who would much prefer to send a patient to an ATS program because they know they are incompetent in it, they have no experience, they've had baad experience, maybe they told someone over the phone they had AIDS when they got a poSitive test result. So testing definitely, I think, now is an entry point to that entire system, but it's a COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 51 System that this area is not equipped. Government has funded the ATS program but the psychosocial medical case management parts of the System are not; there, they are there but not prepared for it. CHAIRMAN ALLEN: Just a qucstion for you all. Should testing be an entry point? MR. BATCHELOR: No. CHAIRMAN ALLEN: I think that's something we need to look at. DR. ROBERTS: Could you be more clear, Scott? Do you mean should testing necessarily be an entry point or an optional point? CHAIRMAN ALLEN: Should it be an instrument of entry into the system? DR. ROBERTS: Jackie, ao you want to respond? MS. GELFAND: Yes, Personally, if we're going to have testing the way it exists today, then it needs to be an entry point to a system. I don't necessarily mean the big pad boogeyman health care system, but obviously a compassion at heaith care system. When I think COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 52 of it at my site, I give the test, I give the positive test result, I have the luxury of being able to take this client over to a nurse in my AIDS clinic, turn them over, give them an appointment and then take them upstairs to a counseling department person who can deal with their immediate crisis needs and hook them up with a support group. And that is the kind of system I'm talking about. It's sort o£ a comprehensive kind of system as oppesecd to turn them out to county USC Hospital, which is a scary thought. DR. ROBERTS: Someoody who said no? MR. BATCHELOR: I geel very strongly. I think for most people testing is not the entry. And the system to the right of the squiggle is really the AIDS system, the AIDS care system, very broadly defined. I think most people with entry to the AIDS system is pubiic education. LZ think that should be the entry point to the AIDS systen. People Should not get tested as their £irst entry in understanding what AIDS means to then COPLEY COURT REPORTING personally. In fact, few people do, only people who give blood find out, women who give biyth, for instance, And, yet, most people cnoose to get tested based on their understanding of AIDS or their fear of AIDS, or their fear about their own personal risk behaviors in the past. MS. GELFAND: Can I respond for one second? I think you're right in terms of education, but I think most people enter the system when they get sick. I think the majority of people enter the system when they find themselves in the emergency room at County Hospital and not from tne educational point or not even from the testing system. MR. BATCHELOR: I thinkx Reverend Allen's question was should that be the entry point. That's why I say firmly it should not be. As I say, the systen we have now I don't think works well. I think people are quite alione when they find out -- the answer to your question, Mr. Goldman, about why tnis is aqdifferent -- DR. ROBERTS: Could I interrupt? We're all ona £irst name basis. COPLEY COURT REPORTING MR. BATCHELOR: The system is in place to respond to peoples' needs after they are tested are for the vast majority of people not appropriate. The vast majority of people do not have T-celis below 500 or below 200, the vast majority. Medical interventions are irrelevant. The vast majority of people are not willing to a oY face the social stigma, the political stigma, the ““~weceenrmens, i economic, the insurance, the medical and the self-imposed stigma to tell other people that ~ re ee they are HIV positive. te, I got tested in 1984 as part of an NIH ee, project right after they discovered the virus. didn't tell a soul for several years; partly at the beginning I didn't know anybody to tell. I thought I was one of eleven in the country who knew. It's taken me until last year to tell people, five years to tell people. I feel immensely better now, but I was facing death every day for five years because there wasn't any System in place, I've been getting better. My T-cells are going up. I'm healty as can be, But the system says I'm sick, I need medical intervention, I'm crazy, but for the vast COPLEY COURT REPORTING 55 1 majority of people it's not there. —, 2 In Boston, we don't have enough 3 intervention programs. Social Support is very, 4 very important. It's only when you can tell 5 | other people that you're positive that you can 6 really get that social support. 7 DR. ROBERTS: Thinking about this, 8 I hear you saying two things, and iaayoe we can 9 disentangle them and be helpful. 10 One thing I hear you Saying is that it's 11 much better if people get contacted and enter 12 into the system out here as opposed to enter in @ 13 directly through the testing. 14 The otner thing I heard you saying was 15 that particulariy at the early stages of 16 infection you think that the social and 17 psychological dimensions are far more important 18 than the medical dimensions, 19 From your experience, would you say that 20 those are particuiarly unavaiiablie? Is that what 21 I hear you saying? The social and psychological 22 assistance? 23 MR. BATCHELOR: Social, I mean, © 24 there is virtually no social support outside of COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 56 AIDS service organizations. And the rare physician who has got, you're not sick, the physician doesn't need to see you. But to get a physician is really helpful and caring is just exceptionally wonderful. But tne social support is not there, the social stigma within any community, gay, black, white, men, women, that's irrelevant. There is no social support for saying, Hi, I'm HIV positive, do you want to go out for a date. That don't work. DR. ST. JOHN: I think what Walter is Saying is very nice. And we addressed some of this yesterday. We do not have a weliness- oriented system; we have an illness-oriented system. And it seems to show no tenaency toward any major, major change. It would be nice if the first point of entry was when you got up in the morning and you Felt really great and you said, gee, maybe I Should go in to see my health care provider so I can tell him how great I feel so I can get positive reinforcement. For most people, regardless of socioeconomic status, they tend to have their first entry into a system when they COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 feel pad. DR. ROBERTS: I wonaer if one of the people from CDC could help us interpret the data we saw yesterday about the question that Jackie was raising and Ronald just raised. To what extent now, leaving aside the issue of what would be desirable, to what extent now do we think people are coming in as a consequence, Alan, Of illness as opposed to outreach? DR. HINMAN: Well, it's not only one of, it is the one from CDC who is here today. DR. ROBERTS: I keep cotting you and Joe confused since he's wearing his uniform still. DR. HINMANs Weil, 1 iad raised my hand because I wanted to point out, us. you taik about entry into the system and testing as the entry point into the system, that basically focuses on the all alternate test site, the anonymous test site; whereas, in the period January 1988 througn September 1989, publicly fundea testing, 60 percent of the testing was Carried out in sites other than alternate test COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 al 22 23 58 sites. 40 percent was in alternate test sites; the remainder was carried out as a part of other services that peopie were obtaining, the majority of these being STD clinics attendees, Again, this was not an issue of someone deciding I want to go in and get tested and going to an ATS site. This was primarily a person who was in an STD clinic or family planning clinic or some other setting who was offered the prospect of testing and who decided to be tested, I should say that in most of tnese clinics, tewer than 50 percent of the people who are talkea to decide to be testea. MR. LEVI: I have to ask a factual question about that because -- DR. ROBERTS: Go aheac. MR. LEVI: Alan, I have to asx a factual follow-up because I completciy believe you that those statistics are txrue. The question I have is was that driven by funding cycies? fn other words, dia the funding made availabiec to alternative testing sites remain level or decline in how states chose to use thei: testing and counseling money while money was being pumped COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 59 into the STD system and other clinies to make sure that the counseling and testing was offered? In other words, did this just happen or was there a conscious decision at the CDC that we wanted to shift some of the testing and, therefore -- for example, did funds increase at alternative testing sites? DR. HINMAN: The answer is that there was a conscious decision to try to extend counseling and testing to sites other than alternate testing. MR. LEVI: So while it is accurate to conclude that more and more testing was occurring at these other sites, it is not necessarily accurate to conclude that this occurred because it's a better way of doing it or that there was diminishing interest in alternative testing sites. MS. AFFOUMADO: I think we have to understand how it was done because I think tnat that also has to play into the psychological and the social issues of this disease for the people who go to STD clinics. In New York City, for COPLEY COURT REPORTING example, if somebody went to a pubiic health clinic to get tested for syphilis or gonorrhea and they had a positive test for syphilis, it was strongly suggested to the point of almost coercion that they should get an HIV antibody test because this positive syphilis pointed up that they might have a life-threatening illness, People who have tested positive for TB in New York City have also had this strongly suggested request made of them. Now you' sre talking about people who are terrified of people who may appear to know more than they do because they are wearing white coats and littie nurse's caps in STD clinics, so they have gotten tested with-very poor counseling and very poor follow- up. And I think that this model now in New York, for example, is being even further cxpanded to look at the possibility of doing T-cell testings in STD clinics pecause that's the "appropriate" place to do this, and Pentamadine and early diagnosis and treatment, which oniy means AZT, and that's ail it means. So we're talking about this impact on the psychosocial and COPLEY COURT REPORTING the manner of which testing is suggested, in quotes, and I think that that's a real important issue that you have to understand, DR. ROBERTS: So what I hear you Saying is that the notion of integrating testing into the care system from your point of view that's less important, mainly, whether it's integrated or not, than how it's done; and that eee — doing it in one site or another doesn't guarantee en whether you really get client-centered care. It's perfectly possible inside a health care -—=- ° nae ee facility that's not AZT-oriented to do a reaily bad job. ne MS. AFFOUMADO: But you've got to understand that STD clinics are not nealth care models. I keep wanting to pring you back to this because we are looking at this as a treatment specific disease, and it is not treatment specific. It has a wide, wide range of things that have to be done for it. Ana AZT, one more point, -- I'm very scared that we are. going to look for a cheap fix, and this is not TB and it's not syphilis; it's HIV. COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 62 One other real brief thing. When you Start talk about giving AZT to peopie who feel healthy, then you aiso say that maybe they're sick. And I think that maybe we have to look again, going back to Marshall's exceilent psychosocial overview of the sense of telling people that they have to swallow a piil which then indicates to them that they are not heaithy. DR. ROBERTS: What I hear you Saying is that to provide medical intervention without moving in the other dimensions, you think, is very inappropriate. And you're not convinced that the STD ciinic is a cite that wii: do anything other than move them aqown the medical line. MS. AFFOUMADO: They can't. MR. DALTON: Several things on the tabie, but it really has to do, I hear Alan Saying that 60 percent of the people, 70 percent ee IN who know they are HIV positive found out through publicly-funded testing sites. ee DR. HINMAN: m the year, nine months I talked about 60 percent of the testing I was done in sites other than ATS, but 50 percent - ~~. ge ete COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 63 of positives during that period were found in alternate testing sites. MR. DALTON: In any event, what it triggered in my mind, and the additional piece of information in response to Jef£E's guecstion is that through conscious choice backea up by funding, people can funnei in the digrection of STD clinics, that raises the question of what happens in STD clinics. Implicit in what Rona said is it's her view that STD clinics do a less ene) ’ . > en ae 5 - es good job of counseling Gr referral, cf Foliow- up. I guess my question is what is the experience of people around the tabic about the relative provision of those kinds of services in STD clinics as compared with aiternate test TT sites? My question for Alan is whether the re government in fact has minimum stanaards for any mace, a of the above in terms of things lixe the amount of time spent on counseiing, the kind of things oO ee covered in counseling, and whether tunose standaras are the same for STD ciinics as for -- DR. ROBERTS: Alan, ao you want to start? Are there standards for the non-medical COPLEY COURT REPORTING ee eee 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 64 aspects of care in these STD clinics and so on? DR. HINMAN: The counscliing, in theory, should be comparable in aiternate test sites and in STD clinics. I cannot guarantec that it is. From the point of view of standards -- MR. DALTON: You say you can't guarantee. Are you Saying that there are steps you could take that would tend to arive peopie in that direction? Or that you in fact have taken steps -- DR. HINMANs: We have guidelines for training of counselors. We carry out training sessions for counselors, and we train trainers for counseling, both counselors in alternate test sites, in STD clinics and other sites. So we are ae attempting to assure that counseling is <=” comparable. _ ee In practice, I cannot guarantee that it ee _ is. I do not nave basically a counseling cop in ne aan nna arate every alternate test site or in every STD — clinic, Iocan say that one of the probiens in nD trying to bring counseling and testing into STD clinics and, particularly, into drug treatment COPLEY COURT REPORTING clinics, for example, is that most cof ctuese “Seeceneenen clinics are aiready overburdened, as was —__ mentioned about mental health facilities, and call arta, particularly in IV drug treatment centers where — they know there is a_ jong waiting Line of people to get into the program. | there May not be a lot - on 1 of enthusiasm about devoting Space. We do not promote that the IV drug treatment center employees give the time, but they may not feel they have the space to give. So there may not be as much as enthusiasm. MR. DALTON: The conseicus decision to tilt testing in the direction of STD clinics, drug treatment sites and the like as against ATSs, wasS that premisea on the assumption that the counseling and referral services would be the Same in both sites? Was there a premise in rr . judgment about the capacity of tnose institutions to be able to do what you want them to do? DR. HINMAN: The premise was to try to bring counseling and testing to peopie who might benefit and those who might be at greater risk of being infected. The dynamics of who goes to an aiternate test site versus being tested in COPLEY COURT REPORTING some other Site are difficult to really manage. We nave seen, for exampie, in persons tested in alternate test sites a declining positivity rate since the alternate test sites were first established reflecting presumably the fact that the test sites that were initially put in place, the people who were at greatest risx of being infected or who were most concerned about being infected went to use those sites, And over time, this is, the positivity rate aeclined ana more Or less stabilized, reflecting presumabiy, then, a not exnaustion, but at least a compietion of some of the backlog of concerned infected individuals. MR. LEVI: You mentionea yesterday, if you coula just remind us, yesterday the return a rate for HIV test results and ATSs versus other re Oo . ° ° s sites because I believe there was a Significant difference. ee DR. HINMAN: There is. The return Le rate for ATS sites is about 76 percent. And it varies in other testing sites as iow as 30 to 40 percent. MR. LEVI: Do you think that has COPLEY COURT REPORTING something to ado with STD clinics being so overwhelmed you literally have to spend the entire day there before you can get an appointment to see somcone? Some inner city Sites are saying if you're not there py 9:30 you're not going to get in that day. DR. HINMAN: That may be a part of it. I think, also, there is a different motivation. The person who goes to an alternate test site is saying on the face of it, I want to get tested and ~ want to find out about the results; whereas, the person who is in an STD clinic because of gonorrhea may not be as enthusiastic. We see this obviously with lower test rates of the people who are -- DR. ROBERTS: Could we get some experience from other people around the country? Rona offered us hex view about the enpirical comparison. Jackie, do you want to say something or Jill? MS. STRAWNs: Having worked in an alternative test site, when the shift was happening from focusing on anonymous testing to doing testing in the STD ciinics, it was my _ COPLEY COURT REPORTING 10 ii 12 13 14 15 16 17 18 19 20 21 22 23 24 experience and most of the AIDS community em ee TT en experience that what they were interested in was eee testing, not testing and counseling. So, in woe fact, the additional responsibilities of the STD staff who were hired for one thing and trained for one thing suddenly became, and you also have to do AIDS counseling and testing, in addition. We haven't talked yet about what is counseling, and that's a whole large conversation; and then also what kind of peopie can do this counseling well. And it often is not the people that have been hired to do something else. So a lot of testing has gotten done, but I really wonder how much counseling has gotten done, MS. DOMBs That's been the case in Massachusetts. When I started working in the alternative test site in western Massacnusetts, I was called to do counseling in the STD clinic because the nurses wouldn't do it. Boston knew that even if they said they were doing it, they probably weren't. Massachusetts did, though, Started recruitiny people for the STD/HIV component from the ATS program, so that they were COPLEY COURT REPORTING 10 1i 12 13 14 15 16 17 18 19 20 21 22 23 24 69 getting the people who were enthusiastic about counseling about the HIV antibody test into the STD clinics. I think your point about who applies for the STD job and who applies for ATS job is key. People who are doing STD don't want to be aoing HIV counseling. DR. ROBERTS: Do you want to word about Seattle? oT DR. O'NELLL: I had the expevYience of working at the same time as a testing counselor at an aiternative test site as well as attending in the sexually-transmitted aisease clinic at the County Hospital. I was doing these things simultaneously. I think one of the things that strikes me, it may be only specific to Seattie, not only are there different populations of patients using the facilities, but different populations of providers working in the facilities. The motivation level, both among the users as well as among the people working there, was very much more oriented towards counseling and support, of which a piece of that was the test. COPLEY COURT REPORTING - cr | 4 x 10 11 12 13 14 15 16 17 18 19 20 21 22 23 70 There was a @ifferent feeling at the STD clinic in terms of, I think you just articulated it very well, saying this is one more thing to be done on a long checklist of things needed to be done aS an appropriate workup of a sexuaily- transmitted disease. CHAIRMAN ALLEN: I have something to say about chat. We have kind of tricd to stay away from the racism and the prejudice, but do you find or is there a possibility of making the hypothesis that there is a greater potential when there is an indiviaual that looks like you, that perhaps you're £rom the community that that's from, to have more empathy and that yreater sense of counseling entnusiasm for the joo, and in an STD clinic where someone comes in that is impoverished, that you may not feel that much empathy for? There seems to be a big difference. As we see the shift, maybe we should start talking aoout the indiginous type of needs of the community, to have folks that are sensitive to your own plignat. So you're talking about the Gifference, I think that needs to be taken into COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 71 account. And we aiso need to consider the expanding, not shifting, but the expanding needs. DR. O'NEILL: I think away of putting it in a poSitive light is saying what worked weli about the alternative test site was precisely that sensitivity towards tne community, at least at the time I was working there, was directed towards the major users of tne facility. MR. SANCHEZ: I just want to say very priefly what my experience has ocen in New York, and that is that the STDs are Leocatec in poor communities and in communities ci pcopaiec of color. The history of STDs is very poor. “iLe counseling is inadequate, They arc voeceivinyg - LT ASRVaL sae five minutes of pre-test counseling, Live a minutes. hat is what people are getting in New a York in STDs. They are receiving pressure by VK cle a counselors to report their partners. ~__ po OT So it's a major concern to we, when I hedr the promoting of STDS and_the voluine Of people nnn ao who are being tested in those clinics. And I just hope that it's not just discussion, but that something is actually aqone to upgrade the quality of services and treatment. COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 72 MR. WHITE: One of the things that we are experiencing, and I think, if I'm correct, all testing has gone under STD, is tnat we, in January, were told we were going to pe put under a quota system of 160 per week, whicn means then cee nner that we have to meet this quota to retain our eens funding. We are resisting that. Se ”~—”—— MS. DIAZ: What funding? MR. WHITE: Our federal funding. They are saying that we arc spending too much a era aenemrteantie cae mananennssen time being enpathetic. You're laugning, but this LE —_— 4 is what we have actually been told because we want to spend time with our ciients, making suye they understand what's going on with then. What are we supposed to do? Because the STDS are doing that, and we are supposed to be tne alternative to them, and you're taxing that from the community and from the people who really need it. MS. AFFOUMADO: You could even extend that to the public health ciinics who have certain productivity levels to meet utilization, and it's the same thing. They lose f£unaing for that, too. COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 73 CHAIRMAN ALLEN: I have a question for Bob. Is there a waiting list that you have? MR. WHITEs No. CHAIRMAN ALLEN: So tnat’s not an issue? MR. WHITE: It's not an issue. What's happening is they are saying we are not utilizing the money appropriately because the numbers are not representing what they want, the numoer of Clients that we are interacting with to represent for the amount of money they are giving us. CHAIRMAN ALLEN: That was my question. DR. ROBERTS: Alvin? DR. NOVICKs I think this reflects something that I said yesterday, the "called" people as opposed to the people who are forced to provide services. So I want to go £urther. We are hearing over and over again the undercurrent that we don't have enough people that are a XN properly trained in both the f£actuak stuff ana a . : . " BR, the sensitivity and the depth and the compassion, entre the whole set, and that training is iacKkxing. I COPLEY COURT REPORTING think it's what we're saying is lacking in the system; that it doesn't have the prover counselors. Jill spoke of that. Tac same lack is in the other sets. We had the littie fight about doctors. We don't have training systems in Amexvica for HIV. The £ixrst such college prograw, as far as we know, is going to be implemented in Connecticut in the fali. It's going to offer a certificate in HIV care at the graduate Level for community workers and for social worxers and others. And we need those because without them we either depend on the identified committed people, or we have STD cmployees who cCouidn't care less. So we have to have a new set of STD empioyees who get into that because they're trained and have a certificate. DR. ROBERTS: I just want to suggest, Alvin, I heard a fairly compiicated description of the problem that was certainiy not just training; that is, there is the issue of self selection and the issue of £Eunding and productivity standards as well as the issue of COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 16 19 20 21 22 23 24 75 training that determines the gqguality. So I didn't hear that it's not just the training. DR. NOVICK: But we do not have enough trained people in America to provide the services we require. MS. GELFAND: I want to say that in the California example, when I think o£ STD a antibody testing and alternate test site antibody ~ Tr eee ame testing, it's the same in my mind, The reason is because Gré€é iS no one in an STD ciinic that has not been given the same counselor training that an alternative test site counseior has gone through, or they won't be doing training. It's the same that goes on in any test site, whether in our STD clinics or confidential test sites, as opposed to an anonymous test sites. There is an extensive training. DR. NOVICK: That's three days of training, trivial training. MS. GELFAND: But ongoing three or four times a year. It is ongoing. DR. NOVICK: It's imposed on then, too, rather tnan voluntary. DR. ROBERTS: What I hear, there is COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 76 no reason for us to have disagreements pased on geographic variety because what I hear is that there is a lot of geographic variety; that the relative effectiveness of different sites in different parts of the country as a function of funding and productivity is very different. You taiked about how counseloxs in STD sites were seiected from the alternate test sites and they were self-selected and so on. So there is no need to come to a consensus because America is a big country, and it's three thousand miles. MR. GOLDMAN: The discussion has been interesting, but let's go back to Scott Saying, he started off asking whether or not testing should be an entry point. Harlon asxed a question of Doctor Hinman relative to whether or not the decision to shift was based upon some determination tnat at one point was a petter entry point than another point. Ana Aian's response that the issue of entry point haa nothing to do with it, that it was purely epidimiological, and what happened to the person that was tested in terms of their caze afterward was really an irrelevant care in the process, COPLEY COURT REPORTING DR. HINMAN: I hope I did not say MR. GOLDMAN: Well, f£ aontt know what happened to the person afterwaras, put in terms of uSing that criteria in terms of which was the most important entry point into tne health care delivery system, then I don't think that most of the people who deal in terms of setting up programs for HIV testing other than those in the field look at it in terms of what's the most effective point of getting scomenody entered into the health care delivery system. There are a whole bunch of othex issues involved, largely involving issues of protection of others and modifying sexual behaviors. And if somebody went crazy but was impotent as part of that process, that would be deemed a success. MR. DALTON: Could you say that MR. GOLDMAN: If as a rvesuit of testing somebody became crazy but became impotent CHAIRMAN ALLEN: Physically. MR. GOLDMAN: Physically impotent, COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 78 that that would be deemed a public health success, DR. ROBERTS: Whose position are you characterizing as that? What I didn't understand and I think other peopie daon't, you are saying some people take the following position. Who is the some people? MR. GOLDMAN: I think those who are involved in pubiic policy who have neothing to do with AIDS or HIV infection, and our state legislators and other federal and state government in many respects. DR. ST. JOHN: I disagree because I work at that level, and I know a lot of peopic who are very concerned about these kinds of issues. So I disagree with you complctely. MR. GOLDMAN: You disagree that -- DR. ST. JOHN: You're ocutlining a whole position that sounds very cola, very scientific, and doesn't take into account human values. I don't think that's true. MR. LEVI: But think avout it, Ronald. He may have put it in an extreme form. MR. GOLDMAN: I did. COPLEY COURT REPORTING MR. LEVI: Which .s useful because it was provocative. DR. ST. JOHN: It provoked me. MR. LEVI: But think about it. Within the CDC aione, the “America Responds To AIDS" program, as Eunice pointed out pefore, is going to be encouraging people to be tested. Yet, within the CDC, has a corrolation wocen made OO between increasing tne demand for testing and ee _ expanding the level of funding dramatically for —_—_— . a . alternative testing sites? No. Ane that is —.. ee _— within, well, the budget numbers don't xefiect ut. wen ee DR. ST. JOHN: a4) funding. ( |-€ate \B MR. LEVI: Or the Pubiic von Service did not request sufficientiy larger increments of funding for testing and counseling to reflect the demand that theix pregram is going to create. Tae numoers don't lie. So witnmin one agency, you aixready nave a dissidence. You have one message being put out een to create a demand and no commitment of resources a to meet that demand. ee eee ne COPLEY COURT REPORTING 80 —_. 1 DR. ROBERTS: Excuse nie one | 2 second, The really Machiavellian view is that by 3 testing a lot of people who are then positive, 4 you will then create the aqemand for service. 5 MR. LEVI: No, not even mecting tne 6 testing demand. 7 MS. BYRNES: I wouldn't just blame 8 the CDC. The federal government does this over 9 and over again. Money goes into the treatment 10 and there are no structures or slots to be 11 proviaed. 12 MR. LEVI: I'm just saying -- @ 13 DR. ROBERTS: You're saying this is 14 the characteristic inefficiency of tne federai 15 government. 16 MR. LEVIs You work for NAPO, which 17 is Supposed to be coordinating ali tne different 18 agencies. Let's say CDC did what it shouid have 19 done, where are the additional funds at HRSA to 20 Support the mental health services ana the care 21 services and all the other things tnat people are 22 going to need? They are not there. 23 In fact, when you look at the care buaget @ 24 proposed for fiscal 1991, it is dramaticaliy COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 lower rather than higher for those services. DR. ROBERTS: Let's let Alan have a chance to respond. DR. HINMAN: I would just remind everyone briefly about how budgets are prepared and submitted, just to reflect a iittie bit. At the programatic level, there are peopie who are advocates as strong as anyone in this room or in any other room who propose what they tnink absolutely must be done. There are people in Similar positions for every range of activity at CDC. These peopie each put cree ele for what they think needs to be 80 pe) bes Zk it would take to do it. These are then passed to the next ievel. The next level looks at all of these great ideas and says there is no way in heil ail of that money is going to be available. So some choices are made at that point as to things that might not be requested at all, or what i:eveil. This goes to the next ievel and next levei and finally gets to the CDC level. CDC decides based on indications they have gotten from the Office of Management and Budget 81 COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 82 and indications they have got to read my lips about whether there is iikely to be any increased revenues available, and make some choices as to what it will propose be recommended for the Public Health Service. This then goes to the Public Health Service where the Secretary is trying to decide between the request from CDC, request from NIH, et cetera, and makes some choices, submits this to the Department. The Secretary decides what he thinks, given, again, the same budget deficit targets and OMB targets, what is likely to be Saleable, and this gets sent to the Office of Management and Budget, which has the final cut. There are appeals back and forth at each one of these levels. These then end up in one way Or another in the President's budget submission to Congress. Now, what the people at the working level think is required to carry out X program, and what appears in the Presidential budget submission to Congress may have very little relation. I think one has to recognize that this is not at any stage a unilateral decision; it is COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 83 influenced by Congress, the general cconomy, the adininistration, et cetera. DR. ROBERTS: Alan, what would you Say, though, ieaving aside the question of who is responsible anda one of the problems with the pudget system is that -- DR. HINMAN: We are ai:z responsiole. DR. ROBERTS: But what I heara the thrust of Jeff's substantive point was the publicity program and the budget requests are conceptually and logicaliy inconsistont, regardless of who has produced the inconsistency. That I heard, and I wondered how you respond to that point as opposed to the question of whether its CDC's fault ov the Secretary's fault. What do you say to that point? You can take a pass, if you wish. DR. HINMAN: I woula say that there is some tension between those goals. But YF aiso have to say that it is unlikely that additional support will be provided py Congress in anosence of clear demand. COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 84 DR. ST. JOHN: I know if you look in the fiscal '90 pudget, the 1.9 billion, that's not what came up through the systen. The request that came up was somewhere between 2 and a haif to 3 billion dollars. CHAIRMAN ALLEN: Just a couple of comments. Clearly, the walk doesn't match the talk when it comes to the advertising of carly intervention and the resources there. Ana that is a big concern we have. I would also like to take up gor the public heaith votes in that I know some people that are anguishing over that aspect rvight now, three of whom are right here. Ana it is a terrible situation to be in. The concern that I have is who is testing really for? Is it for the society or is it for the individual? And I think the testing was born Out of protection of the blood ane it has continued on in that mentality of the protection And we have added on the sSensc, weil, now it can help the individual but I'm not co sure. And that's something I'm struggling with is who COPLEY COURT REPORTING is it for. We've taiked about the political will, and this is part of the sociclogical phenomenon; it runs deeper than that. it's the capacity for compasSion that we have as a society. And f£ don't think we care. I don't think as a society we care. So we ave asking people, we don't have that sense of compassion, So it's not just the peopie at Pubiic Health Service; it's the people that vote, the people that are out that simply don't care. That's what disturbs ime. If we want to do sone educating, we can't negate to the need for general education for sensitivity te the issues and the tragedy that is happening cn a coliective sense. But I am just very concernea tnat we are walking down this road with a pack of Lies. DR. AMARO: I am Hortensia Amaro and I am at the Boston University School of Public Health and on the staff at Boston City Hospital. I think the whole issue of testing is really irrelevant when we have no system for any —_— eee Renc—of—continuunaee cere: The women that I work 7 with, we have-e—project here within the NiDA COPLEY COURT REPORTING community-based prevention programs targeted at a pregnant women at nigh risk oO ee question of whether testing should be the entry point foi medical care is really ixrrclevant tox - we ne this group of women because these women are ~~ > wee totally disconnected from any kind cr hearth ne re —— care. Testing is not going to be the entry point a ee a . a for them. There is going to have to be a lot o£ $$ outreach and education before they wiili get to the~point of testing, and they are guing to -nreec— eee a lot of support. A lot of these women are homeicss, don't have access to drug treatment, nave Re — of issues axound—chi welfare concgins. Unleus— those issues are aadressed, they wili never get ene ee woos a to a point of considering testing. in Lact, if ee _—— - ee they do get hey probably, it will — Ce probably enefit to them oeccause th connection between that and the king of services, ie ee the level of services they need doesntt exist. * ” nee eee So I really want to Support, you said "the walk doesn't fit the talk", because we continue to focus on testing instead of on how can we set up a continuum of care. A whole set of€ services COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 87 that wilit really connect people to the services that they neea, and I ceaily would hope that we couid focus this discussion more on that than on whether testing should be in STD clinics or in alternative testing sites because Y£ think for some populations, the framing of the issue in that way is irrelevant. It doesn't get to what they are facing aS a barrier. DR. ROBERTS: Don? MR. GOLDMAN: How many of us at some point in time have been told that the role with CDC is just reduction and not heaith care delivery? I've been told that at icast on half a dozen occasions. And I'm not being Criticaig OF © it. On how many occasions has the GAO been critical of the CDC in terms of its willingness to allow the use of funds ostensibiy for "% ¢ reduction", when in fact it’s wecing used fo Kinds of counseiing ana treatment, much to CDC's credit risk ana putting its ass on the iine Subject to those Kinds of criticisms. So all I'm trying to say is tnat here we are people who are involved in HIV health care delivery, and there are a lot of people cut there COPLEY COURT REPORTING 88 1 who have different agendas other tnan HIV health 2 care delivery in mind. And to talk in terms of 3 that is the agenda and that is the oniy purpose 4 of testing and testing is an entry into the 5 heaith care delivery system, thererore we are 6 talking about the heaith care delivezy system as 7 a form of masturvation. 8 DR. ROBERTS: Marshaii? 9 DR. FORSTEIN: I agree, underiying 10 my premise of why testing becomes the ligntening 11 rod, I agree with Hortensia, tes ting is c least 12 common denominator of where mo : pee to make C 13 sense because you can “th (LO, f , doa eg Uni 14 measure what you've done. But/there is a magicai 15 thought by the government underlying all of this 16 that if you test people and you tell them that 17 they are positive or negative, peoupie will do the 18 right thing. What tnis means is that people wili 19 stop sharing needles and stop having sex. That's 20 the most primitive ps sychology underneath why we 21 want to test peopl 22 We want to peiieve fundamentaily, although 23 there is no data in any scientific way that 24 Supports this, that if you tell peopie they ave COPLEY COURT REPORTING 89 positive they will stop doing what we don't want 2 them to be doing. If they find out they are 3 negative, they wili avoid getting into troubie. 4A ( woTHeve_this unbetrévably primitive and 5 f belief that people always do what's sest for 6 L Enen. oO 7 MS. AFFOUMADO: "Just say no". 8 DR. FORSTEIN: That's why testing 9 sparks the lightening rod because to fund a 10 program which really cpeaks to the needs o£ 11 divergent changing communities is much more 12 expensive and much more complicated in its ® 13 design. 14 MS. AFFOUMADO: And you have to 15 care to do it. And you talx about creating 16 demand, by your advertising, there has been a 17 demand for health care services in this country 18 Since the Sixties, since the Seventies. The 19 reason we have a health care crisis in New York 20 City and every other urban center in the Unitea 21 States is pecause the Feds and other public 22 agencies have pulled apart the primary care 23 System in this country that we fought so hard to put together in the Sixties and Seventies, ana COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 90 all of a sudden it's been pulled out from under us. So of course we don't have a neaith care system. We don't have anything to buiid on anymore, it's been so compietely dismantied by the funding structures, DR. ROBERTS: One of tae interesting themes that Marshall mentioned and Bob mentioned because I want to raise it briefly is this whole question of the pressu:xe of managers to find measurabie outysuts in tne use of productivity standards and what that aoes to the quality of care. At some point, it scems to me, it's at least worth people thinking apout what an alternative to that mentality as a control and management system is. It seems to me tnat is a serious problem if one is going to advocate complex community-based services. Tanerce will always be a GAO and there will aiways be an OMB looking over peopies' shoulders with regard to the question of productivity and guaiity and so on. And there is, I think, a history of Suspicion of community-based organizations with regard to those sorts of issues. COPLEY COURT REPORTING So at some point I would po really interested in having people who axe on the front lines talk about their experience ana how to respond to those kinds of pressures. We have talked a lot about this squiggie. And to go back to it, Marshall zaiked a lot about the psychological aspects. Hortensia started to talk about the social aspects, about hnousing and homelessness, for example. In terms of the populations that we are discussing, what are the key social aspects because this is psychosocial; it's not just mental health ana psychological. Where are the big gaps in terms of social services? DR. FORSTEIN: I will yive you one exampie which we are dealing with in Cambridge very concretely. For a person who is undocumented to go to the ATS to get results of the test is safer to come to an STD clinic who then documents and opens up a medicai chart and the person becomes vulnerable to issues around documentation, deportation, so forth. The _ medical care system doesn't hayve—a—weayte-get— people from the ATS into medical treatment unless nn COPLEY COURT REPORTING 10 11 12 13 15 16 17 18 19 20 21 22 23 24 92 we.cCcan in a sense subvert all o£ tne stxeuctures oo —_——— ee which wouid require things like recording, contact tracing, that Ki se co tre ae eee partners, That's one example of how the difference between testing and different sites can mean oe aes something different from different peopic. — People who have addictive ochaviors, people who hold jobs that are sensitive, are unlikely to go to places whereby identifying themselves as a risk for HIV then cascades a4 whole series of aifferent things, like getting people homes, peopie losing their jobs, iosing Medicaid, being eligibie for Medicaid. DR. AMARO: I will teli you about an example of the pregnant women we are working with. We have women coming in, some ot who are seropositive, some of whom are at hicgn rvisxk, they are pregnant. Through the course o£ cducation, we talked to them about, we counsecied them about testing, and they may or may not get tested. But we've had women who test positive. They are homeless. We can’t get them into any sheiters because shelters don't take peopie who are COPLEY COURT REPORTING actively using drugs. We even have some women on methadone who won't be accepted into shelters. If a woman comes in ana find out she is . a positive and if as part of her pehavicr change _. rr effort aecides she wants to get into treatment, ee CTT i , we can't get her into treatment. She then finds herself£ homeless, still uSing drugs, goes to ae, Qeliver, and a 51(A) will be £iled because she is =—. still using drugs and because she may not have a en ee ne Place to take her child. So chances are her ee a ee Child will be taken away from her. a ee Now that she doesn't have a child maybe she has a better shot of getting into treatment because she's not pregnant, but even then the beds are limitea. So © think thezve are obstacics for different groups of people, ana the particular population I'm talking about, treatment for women, especially, is very agifficuit. For pregnant women it's almost non-existent. So I think drug treatment and housing, shelter, and also tor women there aze child care issues that come into piay when women are infectea or begin to get ill. COPLEY COURT REPORTING CHAZTRMAN ALLEN: Let me follow up on that. If you're saying there is a potential for the woman to iose her chiid or Rave tne chiia taken away, and presumably since we don't know the positivity of the chiid, what kappens in the progression of the child? DR. AMARO: When a@ woman delivers? CHAIRMAN ALLEN: ¥es. DR. AMARO: Well, if tnere is an investigation, then there is some assessment made by the social workers in charge, whether this person is able to take care of the cnild or not, whether they are abie to find a home for her ox some kind of sheiter. If not, the child will be put into foster care. Sometimes at a later point, that whoiec Situation will be reassessed. But a let of the times, these women lose their kids and are not able, sometimes a lot of them nevex regain custody again. Some of them are able to regain custody after they have been through treatment and are able to show that in fact they are able to take care of the kids and their iives have stabilized. Because there are GO many barriers COPLEY COURT REPORTING ul 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 95 for them to get into treatment ana for their lives to Stabilize, that becomes a really difficult thing to achieve. MR. SANCHEZ: May I just say that at the Commission we have had cases ana Situations where we have had to intervene on behalf of women who are HIV positive, we have had to educate the judges, basically, and inform them of their violating the human rights iaw, just based on the fact of the woman being HIV positive, not being symptomatic or te the progression of the disease, just the fact that She is HIV positive. They have been real close to special services for children taking the child away from the mother. DR. AMARO: I want to acd one thing. That is even to get women to get tested, to get them to a point to where they want to or are ready to get tested takes an ongoing relationship, developing a relationship of rapport and trust with the AIDS or heaith educator that is part of the program. So tnat a lot of the women wiil come in wanting AIDS education, thinking they might be positive, but COPLEY COURT REPORTING State” be * ant a i pe 10 1i 12 13 14 15 16 17 18 19 20 21 22 23 24 96 they will not want to be tested until three or four or Gix months dagown the Line after they really have a sense of trust. DR. ROBERTS: This will be a good time to take a wreak. CHAIRMAN ALLEN: I wouid iike to make one announcenient, I know there's been some Frustration because you want to speak. LE you have something that you wouid iike to share with us, you can put it in written form ana give it to US. That will not be lost. So aon't £eel like this is your only shot. We do want to hear from you. (Recessed at 12315 a.m.) (Resumed at 11:35 a.n.) DR. ROBERTS: During the break, Larry Kesslex said to me that he thought there were some other aspects of this list of social problems and needed social services that we hadn't yet addressed. I asked him if he would lead us off at this point and heip us as to this list. MR. KESSLER: One of the things that occurred to me in terms of talking the waik COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 97 and so on is that it hasn't come up nere a iot, but I know it's in the minds of everyone, bout I think for the record it would be good to state. When we talk about access issues, tnat certain groups who are considered in need of the test or certainly in need of medical care ana so on, have greater access to things iike crack, cocaine, marijuana, ice, than they do to AZT and aerosolizea Pentamadine, and otner things that would be part of the continuum of caze. And when we butt that up against the kind cof pian, the Bush-Bennett drug plan, for instance, which hardiy mentions AIDS ana doesn't aeai with the intersection of the two epidemics of addicticn, we have a problem. It's more than just no drug treatment; it's easy access to some of the other things that lead to drug addiction. It easily moves into the wholic question of crime prevention and so on. But aiso, I think, on the flip side talks about the ieyalization issue and, again, the whole priorities of where we put our money and what we invest in. And we're more interested in investing in prisons than we are in neighborhood heaith centers. COPLEY COURT REPORTING We're more interested in investing in helicopters and security forces at boraers than oreaking down the parriers that keep people from understanding that AZT or AP is available or sShouia be available. Hortensia reminded me of some of the studies that came out recently that show guite Clearly that people of color and the poor have a different longevity rate after diagnosis than those who live on the othexy side of town ox have access to insurance, But in the mix of that arc ali of other things that are enabling, that axe tempting, that contribute to the aeteczioration of one's heaith, the social fabric, ana so on. And that piece, f£ think, just needs to be on the table so we pay attention to that; specificaily, in addition to things like poverty and unemployment. But the whole drug phenomenon is out of control, and we need to look at that when we're taiking about controlling AIDS; that it is a public health issue, not a criminal issue. MS. DOMBs: I think that's interestiny because driving in this morning they COPLEY COURT REPORTING were talking about the Summit and the South American issue, Soutn America looks at it as drug issue. The United States looks at it as law enforcement issue. I was saying what happened to heaith in that whole aiscussion. think that trickies down to how we aon't fund programs that are accessible and avaiiabie to people not only in the cities but in non-cities as well. DR. ROBERTS: Mindy, I just want to push you and push Larry a little bit on this question because I think after lunch we're going to want to talk a little bit more about the funding issue. But at this point, it does scen to me that we at least have to think about the question of priority setting, admitting that not all the money is going to be avaiiable out of any budget process that we would like. And where would you, if you had an extra $10 niiliion, this is the easy form of the question. The nasty form of the guestion is where would you tuxe $10 million? MS. AFFOUMADO: The £i1xrst question is who would give it to hez? COPLEY COURT REPORTING DR. ROBERTS: Willian Bennett gives her $10 million. Seriously, what wouid your priorities be about where we ought to be spending additional monies? MS. DOMBs The first one is treatment on demand, MR. GOLDMAN: For drugs, vefore MS. DOMBs Drug treatment, rehabilitation programs, before AZT, aecitinitely. In fact, where I'm from in Pittsfield, tne physicians who are administering AZT to drug users are finding that drug users are having 23 epitome for every failure that we've turned away 24 from in the past two or threc decades, but at the ee COPLEY COURT REPORTING Same time it's its only crisis. How do you aeal Sin with the systematic crisis that aliows for an epidemic to get out Gf control, to some aegre and then at the same time how do you deai wit the system? I think we have to do botn. I think that Jeff's point is welii take that you kind of have to sit back ana Say swa your gut, and say I can't take on the whole t HIV Cc, a n, liow hing and I've got to get a shelter because they have no other piace to go. And being on the stree that night is going to be worse than not bein with a roof over theiz heads. But at the sam time they are not the only ones entitied toa shelter. There are peopie who are dying from rrostbite who aren't HIV infected. So we buila coalitions. And one of th ee eee t S e Cc coalitions was for the disability act, whexe people of different communities join togetner Many to pie get a disabiii rights Law on the books, peo who are in with ot © kinds of physical Gisabilities, so we extend our reach MR. KESSLER: One of the words was used, it's aimost becoming a buzz word os that COPLEY COURT REPORTING because it comes up at every Commission nearing, war er ~ ~. ea . and that's the whole issue of Leadership want to add to that buzz wordt Thole concept Of advocacy. What part of the problem is, when we taik about increasing the pie or enlarging tne funds that will deal with ali these social issues, legislators, governors, mayors say you've got to go back to educate my constituents. You've got to educate the population of Massachusetts, the City of Boston, so that they wili support this tax increase that you're advocating. I chink that's ass backwards. I mean, they are elected to help educate the public about the necds, the social needs, the heaith needs, whatever. It's not my -- I can't do both, xun an agency, and the people who work for me can't aiso care for people, and at the same time be at the State House Gight hours a day, educating them but then having them come back and say you have to throw a protest up here to make it iLook like we're really screwing you so that we can get the angst level up if the Globe covers it. And ali of that is such a twist on how we build a climate COPLEY COURT REPORTING of compassion, MS. DOMBs: i don't want to scen like I'm agisagreeing with a Conmiscsion memper, necessarily, particularly since we're from the Same state, but I'm not so sure if that's ass backwards. The health education programs that are in many countries, it's proven tnat when they come from the top down they don't woxrx, and when they come from the bottom up, they ao work. And from the bottom up, I think it's sort o£ Gad that we look at people from the bottom, but as an AIDS educator pretty much out in the boonies, I have to educate people in politics orherwise I'm not doing my job. I have to educate pcopie on the history of the epidemic so they will understand the context of AIDS, that we'ixre not vseally learning about how HIV relates to the T-ceil. We're learning about how long it tock the government to fund anything. I think that does become an AIDS ecdGucato's job to ao that. It's just aS much as to be forced upon touching on homophobia in discussion groups, ana other issues that aren't technically AIDS related, but in the context that AIDS COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 see” MR. KESSLER: What I'n trying to happens. Say is they want us to educate about AIDS, but they also want us to @ducate about why taxes Should be raised, So we're now acing two things. We're eaucating peogle about taxes and educating them about human suffering. DR. ROBERTS: But iet ine again push you from the devii's advocate point of view. If people who welieve, presumably if we nad Governox Dukakis in the room, he would say te you if people who believe strongly about the desirability of expanded services aon't go out and make the case for cxpanded taxes, I can't get it through the iegislature, and I've iost, George Keverian ana I have now lost this four times. And if George Bush is successful witn no new taxes, read my iips, then that has an impact on the amount. Why is it not the responsibility of the advocacy community to urge tax increases? MR. KESSLER: lt think it's a aduai responsibility. When we taik about ie@adership, when George Bush @qid his August taik on drugs, he didn't do what Rona advocated, and that is use COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 131 some flow charts that showed the connection petween this wax on drugs, the eighth annual war on drugs, and the connection between that and AIDS and the investment in the future. He taiks about investment in our children pecause that's a neat phrase, but the investment realiy is much broader than whether the five-year olds -- DR. ROBERTS: The qucstion isn't he's not doing his job -- MR. KESSLER: It's a lcadership issue. Helping people see the connections. DR. ROBERTS: But what's youi part of the job? MR. KESSLER: Our part is to deliver some of the services, if we were adequately funded, and to help ponuila tne climate from the bottom up. It has to be buiuit from poth directions so that there is a climate of compassion, that there are adequate services, that the sociai fapric and the safety net meet. DR. ROBERTS: So you aon't disagree with Minday saying. that people in the deiivery arena do have a responsibility to aavocate for expanded funding and for higher taxes? COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 MR. KESSLER: No. But IT don't want that to become the full-time job of my agency or the Dimmock Health Center or any othey piace that has another mission. We are, in the iast two years we have been calied in so many times and told the only way we can get this amount of money is if you guys go out and raise some aelil, if you hit the streets Ox do a Sit-in or do something else. And yet that now is beginning to fail now, too, because there's a certain skepticism about those activities. MR. LEVI: There is also a fundamental conflict that you're imposing on groups like Larry's which get state ana federal money. And at the same time those same state ana federal officials are saying go lobby and go advocate, and if they dao too much ilovyeying and advocating they'll lose their 5013(C) status and eligibility for federal funds. Cieariy there is a responSivsiiity for that kind of advocacy, and iI assume you Know how much advocacy has come out of the AIDS and gay communities around these issues both out of the local and national level. But that is not soiely 132 COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 133 the responsibility. I mean, it is as much the responsibility of academics at Harvard University who see what's going on and probabiy nave more access than the rest of us do to decision-makers to sit down with investors and congressman and say this is screwed up and you shouid ve doing it and it doesn't matter whether it's the botton percent of the population or the top, you need to be doing it because I sitting in my ivory tower see the systemic issues. DR. ROBERTS: Let's just be clear. I am playing devii's advocate, Jeff, and taking that position seriously -- MR. GOLDMAN: I would Like to ask Jeff or anyoody else, are you suggesting that the Commission would deal with the whoie systemic proplem, is there an implication or suggestion that the topic that this meeting is caiLiea for here today, namely HIV testing, is too segmentea and too small a portion for the Commivusion to deai with as a matter of your recommenaation, to deai with at all without having, outside of the context of those larger issues, whicn might bea more Significant job to deal with? COPLEY COURT REPORTING po —- 1 MS. DOMBs: Can you repeat that? a | 2 MR. GOLDMAN: Is it appropriate to 3 deal with such a swiall segment of the who.ie 4 global issues that clearly are so important to 5 deal with in terms of HIV testing? And is it 6 something that perhaps the Commission ought to 7 defer dealing with until it first deais with ali 8 of those other issues? And it may be the answer 9 to the question that what recommendations ought 10 the Commission come out with in terms of HIV il testing, or the Commission ought not deal with 12 the issue of HIV testing until it £ixest deals @ 13 with the issues of poverty and jobs and social 14 services. 15 And is it too fxagmented an issue outside 16 of that whoie larger -- 17 MR. BATCHELOR: You're trying to 18 make AIDS the cure, and AIDS is the eisease. 19 AIDS may point out some of these probiems but 20 also points out a lot of the strength in the 21 system, and in human nature and democratic 22 process ana on and on. And yet, community health 23 centers and agencies dealing with strange @ 24 diseases and unusual diseases have aiways had to COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 135 advocate and do sit-ins. MR. GOLDMAN: But HIV testing, not AIDS -- MR. BATCHELOR: Genetic testing before AIDS testing was bringing up very similar problems. Probiems have always been tnere. AIDS has pointed some of them out. But if we wait to cure ali of the other problems betore we deal with addressing some idea of cure ox whatever, prevention of AIDS, then this is the Presiagent's ~ Commission on the World's problems. Tnis is the President's Commission on AIDS, and you can focus DR. HINMAN: The National Commission, not the President's Commission. MR. BATCHELOR: But to address the issue of AIDS and what we can do about solving it is something this Commission can do vecause we have been taiking problems for many hours. i think we need to taik about some sciutions. DR. ROBERTS: Marshail and then Larry and then we break fox iunch. Wnen we cone back we are going to take Walter's injunction seriously about talking about positive COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 136 recommendations. DR. FORSTEIN: I would Like to suggest that they are not necessariiy mutually exclusive to do both at the same time. in fact, if the Commission can serve no more purpose than to get people in leadership positions to see the complexity of the problems anda to then figure out a strategic way to begin to approach some of those probiems that are doable in the chort teri but which don't by doing in the short tern undermine the long term, if we can get the Commission in @ sense to take HIV testing asa paradramatic problem that can be both addressed in and of itself but also points out the connectedness with other social issues which have to be addressea in order for HIV testing to have any benefit in the whole spectrum of disease. The Commission can teach people how to think as much as they can teach people how to do. That is a major problem that I see is the way in which we dichotomize and simpiify as opposed to expand and connect. We only have so mucn money in one particular area to start with and we need to argue where to do tnat. But if COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 137 you're taking $10 million, if tnat's ail you've got, and you're putting it KX but you realize if you put it in K this way, it doesn't five years from now undermine, but if you put it in Y it may help, that's avery different way of thinking about the short-term connectedness to the iong term. MR. KESSLER: I think Marshail said most of what I was going to say, ana that is the people around this table have seen tne interconnectedness clement in this meeting, and we've just been avie to articulate it better. I think that's kind of helpful to keep finding the new words to describe our [frustration as weli as Our vision. But in terms of Walter's remarks, too, I think one of tne things we couid easily do, aimost, iS Simpiy take the report and insert AIDS because it's the same sort of conditions are still there except that the new probiem that's ripping the society apart, an additional probiem to racism, poverty, is AIDS. But there, too, the intersection is real clear. So we haven't learned muca from the mid COPLEY COURT REPORTING and late Sixties about how communities fail apart and respond and react, and now we have this other thing, this new drop of oil on this scalding caldron here, and it's AIDS. And the other big drop is addiction. And the two of them, you Know, are intersecting, and the metaphor on the dam or the earthquake metaphor is the gridlock ee metaphor that I often use, and that is that these i — two epidemics are ieading the griaicck. What ene SEES al _ happens when you have gridlock is it doesn't matter whether you have a driver's ticense or not; you can't move. We are approacaing the a a point where you can't move. We don't have many options put to sit there and become frustrated, more hoperiess, despondent and more hopeless, and running out of gas. DR. ROBERTS3 All right. We will reconvene in exactly one hour. Tnere is not much time for the aftersoon Gession so let's try to actually make it an hour, if we could. (Recessed fox lunch at COPLEY COURT REPORTING AFTERNOON SESSION (Resumed at 1:35 p.m.) DR. ROBERTS: Walter isn't here. was going to let him lead off since ne told us that we ought to beyin with the question of SOlutions as opposed to problems. But I wonaerea if any of you wouid like to lead us off and say from your perspective what the reai priorities are about the directions in which the Commission ought to go. Imporcant points of inaustries and emphasis in terms of psychosocial services, places wnere you think the system is really failing. MS. STRAWN: One of the things that we talked a lot about was access to services and pointed up the probiems with that. But one of the things we didn't taik about, anda i'd be interested in Marshall's response, but anyway, I'm not sure the mental heaith foiks are ready to deal with AIDS. In fact, the psychiatric/ psychological profession has been realiy reluctant to embrace AIDS, more reluctant than the medical profession. COPLEY COURT REPORTING 10 11 12 13 15 16 17 18 19 20 21 22 23 24 140 DR. ROBERTS: Even more reiuctant. MS. STRAWNs: So tnrere's beeting up services, but then important training needs tnat we did mention this morning, particu.ariy for mental health foiks. MR. GOLDMAN: I want to ask a question along those iines. There has aiways been an almost, ina lot of different arenas, conflicts in terms of allocation of vesources between outreach on one hand, provision of access to services on the other hand, and then what I would call training probiems on the other hand. In other woras, what's the point of doing Outreach if there isn't access to facilities, and what's the point of access to facilities, if there axven't people to do it. Therefore, logically speaking, what you ought to spend your first dollars on is training peopic so there's access when you do your outreach. And one couid argue that's the way to do it. I think what ends up happening is that there is a balance between those and that at various points along the line and at various times and perhaps in various localities tnere are COPLEY COURT REPORTING different kinds of bottlenecks chat ut one point in time the bottieneck might be the iack of faciiities. And at another point there are plenty of facilities but no professicnais there to operate the facilities, and at ctner times there may be plenty of facilities but you need outreach programs to bring more peopie into it. One guestion that I would have is ace SSNS there any generalizations that one can shouid each locaiity make its own determination with respect to how to baiance between those? —~ ee . * x “, OO — there something tnat ought to be done ata nationai level to deal with that? Or is it more Simply a local issue, ovr is there one place aiong that continuum that the Commission wants to make recommendations on for both? MS. DIAZ: I'm sorry Joe isn't here because I thought that was the very essence of the HRSA AIDS service demonstration projects, Don. All the work is not in on the first set of projects, which were four, as he aescribed yesterday, but with 25 additionui piiots around the country we ought to have a pretty good idea a eeeSsS—sSs—sasa—FSES within the next year of that triaa of faciiities COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 a1 22 23 24 142 and resources ana personnel and needs of the population to get them to those services, So I reaily think that a lot is resting on that particular issue, DR. ROBERTS: What I neara Don Saying was where do we perceive the reali Limits are in terms of providing additional services, and are those limits the same in different parts of the country or different in different parts of the country. MS. DIAZ: That's what those demonstration projects are, the fouc initial ones. The report is almost in. We've talking Miami, New York, Los Angeles and San Francisco. That is just about in. The HRSA Advisory, AIDS Advisory Committee is going to be reviewing this because that material is coming in from those first four. But in addition to that, there's 25 piiot areas studying the very thing, providing the answer to his question. CHAIRMAN ALLEN: Are you sure HRSA has an evaiuation mechanism? MS. DIAZ: To those, yes. COPLEY COURT REPORTING 10 11 12 13 15 16 17 18 19 20 21 22 23 24 CHAIRMAN ALLEN: liave you seen it? MS. DIAZ: Yes, £o0xr a coupie of areas. And I understana that tinat’s now they funded the cthers with an evaluation component. But a heavy common thread to all o€ those is an establishment of a community~based case management system that Looks afrter not letting people fall between the cracks. DR. ROBERTS: Other views and following Walter's proposed program avout what it is we need to do? We could end this meeting early and let the Commission meet, wad we could all go f£ight the ice and snow. MR. LEVIs Well, we really haven't grappled with the care financing part o£ this. Even if we come up with a model, we stiii have to Figure out away to pay for it. I tnank one of the issues that the Commission certainly has to Face, and it comes bacx to the whoie guestion as to whether we create something around HIV or we deal with some of the systemic issues, is do we resoive those access to this perfect system that we have now created through traditional financing mechanisms or something that is unique to HIV? COPLEY COURT REPORTING 10 11 12 13 15 16 17 18 19 20 21 22 23 24 144 And my bias would be that if we are trying to create the precedent of a commitment to providing for this range of services ana treatment and whatever it may be £or anyone witi a serious illness like HIV, then we need to be trying, even putting aside the issue of whether you have an AIDS specific or HIV specific site, 4 you try to integrate at ieast the financing into = ee the existing systen.— ee To me, that would imply, for example, and I'm going to get myself in a lot of trouble saying this on the record, but i'n going to say it anyway, an example of how we've done it wrong and how we could do it right, that came up earlier. When the funding for AZT is, ana I — plead guilty because I supported it and it was right to do it and it's right to continue it, but Snr trae se > had we to do it ail over again, I think I would mo a OC do it differently if we could, The cpecial program for AZT and rveiated drugs now_is not — logical. The logical thing to have gone is to Ne amneetl create some sort of system within tne Medicaid program so people would, so that it is truly integrated into the system that we have in ‘this COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 1& 19 20 al 22 23 country for dealing with poverty issucs associated with medicai care. Ana that's what f think. I xnow peopie in Congress are looking at it, and I nope this Commission will iook at it as well, is the notion of creating special access, creating access to HIV-related care through the Medicaid system. CHAIRMAN ALLEN: I have a question about the financing. Do you feei that the proportion of financing in, regards to testing and early intervention, if that is the correct proportion? We could ask for more money, but we can also say this is a correct way to spend what we've got. I want to know your opinion, MR. DALTON: There is a separate working group here that is dealing with bigger health care financing. I think what Scott is trying to do is to figure out how we can feed into the kinds of concerns we've wocen talking about for the iast couple of days. If there are distortions in the. proportions in the way money is being spent £rom tne perspective of the people in this room, that's certainly sometring we've COPLEY COURT REPORTING (| 10 11 12 13 14 15 16 17 18 19 20 21 22 23 got to do. But this is not the place to take -- MR. LEVI: But the beauty of putting care in Medicaid, that avcesn't come out of the 1.6 billion dollars. MS. GELFAND: rte just scems to me that the bulk of the money is going into testing and it's not iinkead to the concept of cariy intervention; and that totally simplistic way, I think that we have to stop testing untii we can guarantee everyboay waiking tnrough that site testing positive, who wants it, a medical evaluation. We can't do that. We can't do that in Los Angeles, for sSuee. And until we can do that, I think -- DR. ROBERTS: What do you mean by a medical evaluation? MS. GELFAND: Base line meaical evaluation including T-cells. As basic as that. And a physical exam. MR. BATCHELOR: A £orlow-up to save money in the itong run would be just to do T-cells testing. MS. GELFAND: It rcreaily scares ime when I hear yesterday this America Responds To COPLEY COURT REPORTING 10 Li 12 13 14 15 16 17 18 19 20 21 22 23 24 AIDS is get tested. I'm willing to cCiose tne doors of a test Site unless they're going to give us more funds because it's not faixc. It's not fair. DR. ROBERTS: What's unethical, Rona? MS. AFFOUMADO: I think again to go back to some of the comments that I've made and other peopie have mace, we can't do treatment specific. We can't do service speci£ic. We are looking at continuums, looking at coordinated services to tell somebody that they are HIV positive anda, yes, they have 209 T-cclis and send them away is worse than being done to weyin with. I think, again, to go one step further and Say you're HIV positive, you have 200 T-celis and we're going to do a physical exam on you and then send them away again is still inappxopriate. i think we've got to get through the notion of this longer-term comprehensive care modei that includes medical, psychosocial, concerete social services ana all of that. And, again, to get back -- which is a big problem, but we have to, COPLEY COURT REPORTING 10 11 12 13 15 16 17 18 19 20 21 22 23 24 148 if we keep talking about little pieces of this pie, then that's what we're going to Keep going after. Ana if we keep saying, weli, it's this as opposed to this, then that's what we're going to Keep going after. All of us who ave working in this and aii of us who are trying to icarn and understand this have to keep saying comprehensive, total packages. I know it's aimost Pollyanna because of the funding issues, but if we don’t, then what we're going to do is what we've aone in the past. We all have to take responsivoility for what we have done in the past because we have in some ways, ail of us who have worked in these kinds of issues before, have creatca the Kinu of€ system we have now. MS. GELFAND: But in the meantime, this has airecady started. MS. AFFOUMADO: I think it's oux job to say stop. Before you do this -- DR. ROBERTS: Do you agree with Jackie? You ought to close the doors of the test Sites until you have comprehensive medicai and social services for everybody that tests COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 149 positive? MS. DOMBs No. Taat's what we had in western Massachusetts. The oniy peopie doing AIDS work were federally funded ATS counselors, who then got invoOivec in trying to create services. It was sort of a bandaid wexvproacn, put it at least got things moving. MR. BATCHELOR: There cestainly axe an awful lot of people who don't have heaith insurance or don't have eligibility fox Medicare Or Medicaid or for various reasons cannot find care, but yet this is not the worst cysten in the whole world we have in the United States. The vast majority cf people do have heaith insurance, People do have access to a network of community health services, Community health centers don't generally provide sexvices for HIV because their focus is on chronic and mentally ill. put the vast majority of people can get care. That doesn't diminish the neeas of peopie who can't. DR. ROBERTS: The vast majority o€ people can get care. Now we have a xve@ai disagreement on the tabic. COPLEY COURT REPORTING MS. ST. CYR: I don't think you're talking about vast majority. What concentration of majorities are you talking about? In aii seriousness, the vast majority of peopie in my | id community can't get care. Tt toox us a year to ee get medical coverage as workexs. We cousan't even get medicai coverage from an insurance — eee coe company for lack of ability to pay. Ana when we “~~ (tet te eerie were able to pay, just because our names were in alice were 3 an AIDS resource it was difficult. nee So when you're talking, you need to put it in perspective. Even when you are conse:idering the strategies and solutions, you need to put in perspective what pecopic, what majorities, what groups that you are talking about. And x don't think we do that very weil. MR. DALTON: At least @Gight or nine people came in after I did. Just So peoviec Know what we're talking about, can you go back? DR. ROBERTS: I propose that we, as I said, that we start with the agenca Waiter put to us on the guestion of positive Suggestions o£ what we ought to do. And we, Jeff said that we have to deal with the issue of financing and that COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 ail 22 23 24 151 if he had it to do ali over again, ne would have thought harder about finding a way to finance AZT that was integrated with the rest of the heaith care financing systen. And I tmink tnat is really sort of what provoked the current conversation. The question I want to put dack to Jett, and it's one that you and I discussed oriefly yesterday, and maywe you can push further, what do you think about going back to what people said this morning about tne need to solve the systen problems, including points that you, yourself, made, what do you think about categozical versus general funding? MR. LEVI: Well, derinec your terms better in terms of Categorical and general funding. Are you talking about the $10 million? DR. ROBERTS: No. In generai, we had a brief discussion yesterday about the relevance of the ESRD model or whatever, and you mentioned again tne question of whether AIDS should be distinctly funded and, therefore, whether peopie with some diseases shouid have access to services that other peopic in COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 152 comparable Circumstances but with aitferent diseases. We have the situation now that if your kidney fails you are covered, and if youx pancreas fails, you're not, which is arguably a little bizarre. MR. LEVI s Unfortunate:iy, end stage renal disease is sort of this strone ara ofr not the way to do things. I guess it depenas on what part o£ the HIV problem we're taiking about, as to whether I would taik about categoricai or discretionary funds. I think in the context of Care £inancing, particularly, I would look towaras categorical funds for both systemic reasons and very practical political reasons. The syctemic reasons are the degree to which care financing is a problem for HIV as related to peupres! Level of income, and it's a larger part o£ the poverty issue, and, therefore, we should solve it within a poverty structure; and that is Medicaid. There is a second reason f£or doing it that way because all you need is one vote to vote it in. And if you do it through a discretionary COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 153 program, you have to refund it every single year. And once people discover how much it’s going to cost over the long term, they may vwecone increasingly reluctant to fund it. So when you do it through the Medicaid program, I think tne right wili oc there indefinitely uniess Congress votes to remove it. The second -- but there arc parts of the HIV problem that beiong as discretionary programs because they are so AIDS specific ana because that is also the way the system deals with disease prevention and control c£forts. Whetner it’s some cf the testing, whether it’s the prevention and education program, whether it's the model demonstration care programs, whether it's some of the support for the community health centers that are providing a lot c£& Cne care for poor people, those happen through discretionary programs. So it’s going to be a Mix. kt's going to pe a mix of discretionary and catcgorical programs. It's going to be a mix of HIV specific and ceneral ones. DR. ROBERTS: If we could, just so that we get the issue clearly on the table, the COPLEY COURT REPORTING a a 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 154 argument over ESRD is in part an argument over whether or not you ought to be ciigivnie for Medicaid if you have a certain mceaicai condition -- MR. LEVI: Medicare. DR. ROBERTS: Regardiess of income tests that woulda ordinarily appiy. So the question to you is, is that a modei one shouied look for to HIV; that is, HIV alse ought to be exempt from the income tests which ordinarily apply as ESRD is, or is it just a gquestion of strengthening Medicare generally? When you talk about uSing categorical money, it wasn't clear to me what you were Saying. MR. DALTON: Before you answer, my concern is that we have very littie time with this group together. There is anothez working group which is going to pe working for the better part of two years on these subjects. We can teil them what information we got in an hour, half an hour, on a nice Friday in Boston, but my sense is they are not going to be moved by what we have to say. COPLEY COURT REPORTING So insofar as this is connected to the issues we have been discussing for the Last two days -- DR. ROBERTS: Fine. Let's move on. MR. WHITE: What's ESRD? DR. ROBERTS: End stage renal disease. CHAIRMAN ALLEN: My original question was are we correctiy distributing funds? Shouid we focus on the redistribution of funds? I suggest that as a Commission in iight of the fact that there is not SGutficient early intervention, either support it with more money Or let's look at the way we are dealing with this issue because here we are, We are about to waixk into early intervention. What co you think the Commission should say? This is what tnis whoie thing is about, testing and early intervention. I'm not saying that we shouid avoid testing. There ace other reasons to test. But we should not advertise those as testing for early intervention if it's not therve. So is tnis realiy helping? As Marshali said earlier, does the test COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 really help or aoes it drive people to despair? And, actually, convoiute the whole issues. L would like to get back to that. MR. DALTON: I doa’t want to narrow it to that. It seems there are any numbex of issucs that people may have that are connectad,. DR. NOVICK: Lt want to addvess that in a sense. I sec the number one issue in the global sense is health care planning for each of - _—_—_—_— _. the different communities. It's become Cbvious ee to us that we represent very different Oe communitics, Alt cf our patients are indigent; all o£ them, ox almost ail, are invoived in substance abuse, And our city as a vesult of having such a large indigent and substance abusing popuiation is very poor, so it has few resources and so on. Each of us has a community that has those speciai features. So tox me, drug abuse issues are very important. But, anyway, what I'm saying is that [I think the top priority is locality neasith care NE rane planning because this Kind of heaith care, cazriy ON a eee ee ed imtervention is delivered in a locality with its TT Own special problems. And most o£ our cities ana ne eee spe COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 most of our counties and most of our states haye not opened that door. That is, I weuid say there may be twenty cities in the country that have opened the door. DR. ROBERTS: SO yous answer to Scott in part is the priorities wili vary f£rom community to community so it's hard to make a generalization. CHAIRMAN ALLEN: I have a question for HRSA at that point. Hasn't the wpudget been eliminated for health care planning? DR. O'NEILL: Tne heaith care planning progzxam, there was no reguest in the ‘91 budget. MS. AFFOUMADO: A point of information on the health planning. Many of the HSAS across the country have been dismantled. There are very few of them that have full staff in operation. There has been no new funding for health planning activities. I would say that's in the last four or five years. In New York state recently the ALDS Institute gave the local clinic $150,000 to put together a coordinatea health plan for New York COPLEY COURT REPORTING 10 11 12 13 15 16 17 18 19 20 21 22 23 24 City and the greater metropolitan arca, but in some ways it's avery bad attempt and a very minimal attempt at trying to do a reali health pian. So it's a reali issue. MS. DOMBs: I have a couple of things I would like to put on the taewvle before the Commission. i appreciate being called. I am unfortunately going to have to leave carly today. Though it sounded like I was aisagrecing with what Jackie was saying, I snare ner concern that by talking about carly intervention and testing before we have the network in piace, the most minimal way of saying is we‘zxe putting the cart before the horse, but it carries mucn more serious camifications. So I wouid pexsonaliy urge the Commission to oppose any efforts to promote early intervention or to iink e@ariy intervention and testing without also giving sone equai time to the need for resources into developing a health care system that can receive, and a whole network for training needs and other kinds of reimbursement necds that can accept the whole pool of people that are going to be turned COPLEY COURT REPORTING I, aiso, and I'm just going to put these out and maybe they'll serve as discussion, I think the Commission Should oppose any effort on the part of the Centers For Disease Control and Public Health Service to promote testing without counseling. I think that is going to do the most harm to any AIDS education effort going on anywhere in the country because it's going to promote the idea that testing is prevention when it's not. It's going to make AIDS education experts! jobs harder because it's going to circumvent any effort of counseling we put in. Where peopie who have maybe shared a drink with somebody are going to be flooding aiternative test sites saying I thought I couid get AIDS. In response to that, Waiter had said earlier that education is really the entry into the system. For many places in the country, testing is the first time they are getting education because they are getting counseling. think we have to realize that we can be AIDS educators but counseiors can also be ALDS educators on a one-on-one basis. iL think COPLEY COURT REPORTING anything the Commission can dw to support tne moraie of the counselors will be heipful. I think that you should urge ail physicians to do counseling before testing. know £rom New York and Los Angeles, it seems iLike avery basic thing. Well, of course, every physician is counseling a patient. Paat's not true. Many doctors don't know anything about the test. We have to counsel then. I also think in line with the issue of€ not Supporting any program that emphasizes testing at the expense of counseling that we shouid lend a Little hand to support Bob's group in Phildadelphia and oppose any efforts to promote quotas for blood samples and not quotas £f£or counseling hours. I think epidimiozrogicai Surveys are important to finding out the scope of the epidemic. Iocan give you the whole paragraph description of the program, but I think tnat's horrendous that we should tie or link that a counseling program's funding 1s going to be restricted if they don't get enough biood on table. That's not the point of a Counseling program. That's the point of the f£anily COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 eo x 161 surveys. There shoulad be a difference. If the £amiity surveys are for tne public, that’s what they are for. Counseling progzams ace for the individual. MR. GOLDMAN: Are you willing to forego the funding from the sources that reguire the kind of epidimiological survey as the handie to justifry their funding -- MS. DOMBs We talked about that earlier today. No, I think funding Shouid be made available to both. MR. BATCHELOR: LI woulda like to emphasize even more what you said about the issue of training. We appear to be taiking psychosocial in particular. We neea more funds for tra€ining psychosocial workers, ana that does not mean only psychiatrists, psychologists; that means the full range of people from strect outreach, people who work with family systems, people that work in hospitals, sociai workers particularly working in hospitals, poth with staff and with people as they leave tne hospital. There’s really money from tne National COPLEY COURT REPORTING ee ee, la ee ti—(ist ss sl ,_eeesesesesiaseseeeeee 10 11 12 13 14 15 16 17 18 19 20 a1 22 23 Institute of Mentai Health to train health officiais, and APA has the grant to do that. But it's not enough. It's getting less ana iess ana less. And, yet, tne need is growing move and more and more. As we talked about noxe counseling needs, more testing plans, ct cetera, we train a lot in our program, a iot cf people have gone through the CDC test counselor training. And they acknowledge that that's not enough. You're so cruel, Al, just to call it the Minimal training. But that's erucl out true. They want more. They don't have an understanding, and they recognize they don't nave enough time in those fifteen minutes. We all know if we look at heaith care professional practices that fifteen minutes out of a physician's time to give counseling is not going to happen. The physician is guing to say I maybe can save a life in fifteen minutes, I'm not that great a counselor, even though I'm supposed to do everything and I'm licensed to do everything, that's not what I can ao. MS. DOMB: In fifteen minutes you might get a person who has no AIDS cducation 162 COPLEY COURT REPORTING except hearing tne government's message on TV. MR. BATCHELOR: I think the issue of training iS very important. HRSA‘S training for health cace professionais, which tenas to be not the greatest training in the worad because it's based on the medical model and most of tne trainees are not physicians. And this is not a factual disease; this is a very psycuosociai disease, even though there are factual germs and factuai infections. And let ine add one shoit personal thing, not to apologize, but to explain some of my points of views where I seem to be Poliyanna. I've been living with HIV for a long time, and I - a was focusing on my death for a long, long time. I decided I better turn tnat around ana deciae _ TT that this glass is half fuii. That comes across SS ee in other things, and I tend to see the positive TT in things, and I hope that makes me Live longer. That deesn't acknowledge the fact that half o€f this giass is empty, and I don't mean to offend anybody. MS. STRAWNs The thing around counseling, besides empnasizing tnat testing COPLEY COURT REPORTING 10 Ll 12 13 14 15 16 17 18 19 20 21 22 23 24 Should not happen without counseling, you folks ——— need to say what counseling is, and what are tne qualities of people wno can do this. —_ DR. ROBERTS: Why don't you say that? MS. STRAWN: Weil, it's a power relationship. I think the difference betwcen what people Caii counseling and what they are really doing has to do with power. “ think that anyone, if they shut the door and vit down and talk with a person and say they are aoing (O we talk at people. I think thar a lot of nealth Un > care professionals talk at people ana caii that =, Se counseling. in counseling, the job of tne counselo ee to help the person have enough information to en ne make an informed decision for tneix own iives what's good for theixy own life. So % wouid i re eee to sce more standards of counseling in foxce. ee ag tren ene Working in an alternative test site, i was do the quarteriy reports. Nobody ever asked me order to get my money what were the quaiifications of the counselors and how much roi ’ ixe ing in 7 ) 164 go couns@iing, put I don't buy that. Y think tnat COPLEY COURT REPORTING _ 10 11 12 13 16 17 18 19 20 21 22 23 165 time were they spending with people and so forth and what kind of referral sources aid they have for the folks who test positive, So there are some standaras that have to be locked into some kind of enforcement or quality cont.s.ol. MS. DOMBs Ana goals £orc G@ifferent pre- and post-test counscling. DR. ROBERTS: I just suggest when we get to the question of what is the oest way to insure that mininum quality standards are mete in the counseling system, that is anothnexr whoie complicated question about whether ox not enforcement or incentives, what's the best way to think of this as a quality management probicm. I just don't want to resume that regulation is the only alternative way to meet that. DR. FORSTEIN: Two Gimpie points. One is that in Massacnusetts when we aevised the alternative test site system we had a fairly extensive plan for counseling and supecéevision of counseling which ensured that since most counseling was going to pe done by non-mental health trained people there still necued to be some peopie who had clinical exoertise and COPLEY COURT REPORTING experience to help sort out the ditference between counseling and more severe pzrovliems that could occur in that acute setting. That was cut from the budget because it was too expensive. I think if we talk about standards of care, there needs to be an emphasis on the Kind of soft scientific stuff that goes in Support of counselors monitoring, not just of what is pneing said, but whether the counseiors are getting sufficiently trained and supervised, soxvting out who is really going to have troubie ana who is not. The proplem with that is tnat needs to then go to people who nave experience and who are trained to teach the supervisocs. I would suggest one of the major things the Commission could do is to be a very strong voice that every level of governmental intervention, that every task force, that every conference have some emphasis on psycnosocial issues, You are fighting an uphiili wattle which 1s anti-mental health. How many mentas hnealth professionals on the Commission? How Many mental health professionals are in each of tne governmentai agencies that are determining which COPLEY COURT REPORTING 10 11 12 13 14 ss) 16 17 18 19 20 21 22 23 24 167 grants get funded or not? There is an intrinsic bias. The mental health people just complicate the waters, and we do. But somebody has to. Ana it seems to me that there is a bias from the top that mental health people confuse tne issue. I think Walter's designation is right, that they are not ali psychiatrists, sociai workers. But it seems to me peopie on the street dealing with people in real crisis can't be expectea to do street outreach work and not nave Support so that if somepody needs to be hospitaiized, if somebody needs to have suicidal stuff contained, that they are not out there alone. There needs to be a continuum of care for people who are doing the front Line :waental nealth work, which is really taking place on the streets. There can be no stronger voice than from this Commission to keep hammering away for the need for every conference, for instance, We just Submitted a proposai, NIMH is now taking money which the American. Psycniatric Association had ag a grant to teach mental heaith professionais. That has now gone from a gxrant to being hooked up COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 to medical ECTs, where training is done for medical purposes, ail psychosocial training has to be done now in the context of medical conferences. So we now get in a two-day conference an hour Cf psychosocial training for medical training. That is what is happening to funding and resources. There is a wearing down of the funding ana the RP is for purciy psychosocial neuropsychiatric stufi. That couid do the same thing with drug addiction, substance abuse and whole aadictionology which we need to keep very much focused on here. DR. ROBERTS: Other views because as Mindy said we're getting towards closing time. We have about 40 or 45 minutes. Things people feel strongly about that they would like the Commission to hear? MR. KESSLER: This is a Slight diversion and it's coming back to a £ew of the things we talked about this morning avout Financing, put it's the will and the way issue. We always dance around the information or the knowledye that it is going to cost a iot of money. And it's important, as leaagers in our 168 COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 eo x« 169 community, ana iniportant to support the leaders at a higher level, that to enable them to talk about how much money it really is going to cost. Not to nickel and dime us to death and to stop putting those littie tiny bandaids on here and there. Another metaphor is we've got a Frankenstein that's covered with these little tiny bandages, and he's iumbering axround trying to stay upright. But the glue is drying out on those bandaids,. It's getting sort and wishy-washy. I prought over -- DR. ROBERTS: Larry, tmnat is the most mixed metaphor. MR. KESSLER: The San Francisco model and the collapse of the San Francisco mode. is a perfect lesson in terms of the kinds of dollars. They just £inished their task force eee report, and theix estimate is that they need $310 a million for the City of San Francisco. ae DR. ROBERTS: When you say the collapse of the San Francisco model -- MR. KESSLER: In the sense that COPLEY COURT REPORTING it's not meeting the needs of the growing numbers, the diverse populations, the burnout of staff, volunteers, other human resource questions, and so on. And, yet, here is a city that has done, relatively speaking, a lot more than most othexy cities. To take $310 million for eee San Francisco and butt it up against Boston which has one-fifth the number of cases but 1/35 the oa . oo oo funds. And that's what New York is aqoiny and ng I, other places. They are not committing cnough bucks so that there they are never off of home plate. They never even get to first, let aione second base, because they never even plan, they didn't conceptualize, they didn't cover ail the laundry lists in some way or another. They didn't figure out how the circles intersect with one another and overlap. But this is the kind of E€xampie of even when you try to do more, it isn't enough. rt won't do it, either. The $310 miliion for San Francisco probably is inadequate, if thney ever found the money, and they are actually very close. They're only 137 million shoxt. But that 1s more than most states are spending on AIDS. COPLEY COURT REPORTING 10 Li 12 13 14 15 16 17 18 19 20 21 22 23 24 171 DR. ROBERTS: Ana what's the implication, Larry? MR. KESSLER: The magnitude. We realiy aren't addressing the inagnituce here in terms of actual dollars. Yet, we don't seem to have a problem taiking about the magnitude of the defense doilars. If there is a new weapon System, we throw around those numbers like they were nothing. But wnen it comes to saving peoples! lives or leading to prevention, or creating a defense model around AIDS, we can't afford that, there's no way. And we've heard it on the trail. The Commission has heara fron county commissioners, f£rom mayors, from city - council people, we can't taik in those numbezgs. DR. ROBERTS: Are you suggesting that -- MR. KESSLER: We have got to aiso Stir that caldron and put some fires under peopies' butts to get on with finding the dollars, or at least understanding that bandaids aren't working because the tendency aiways is, and we fed it, as Jeff said, we all made those mistakes for settiing for less because even in COPLEY COURT REPORTING Ww 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 172 our own minds we always thought this wou.d go away by 1985 ox surely will go away wy 1990 and those pandaids would have paid off, wut it hasn't and they haven't. And we have to sort of deai with that in a kind of -- we need our own levei of conversion here to say let's convert the money tables, too, ana really talk about those big bucks. That's very difficult because that means moze doors get Slammed in our face even faster, Bute it'S paxt of the planning and part of the consciousness raisGing that isn't taking place. It's the other Side of the compassion, the cash side of it is fairly high. Very, very high. MR. BATCHELOR: And the human, from the health care worker's side of it, so many o£ us, honest to God, weil, this has got to pe over soon; surely they'll find something. We make tremendous progress medically on AIDS, and, yet, we don't have these great cures or preventions yet. And people are just getting so overwneimed, I'm sure the Commissioners have heard that ail over the country, too, but those of us who thought surely this would be done by now are on COPLEY COURT REPORTING 173 the down side. People get burned out. That's a great number of people to diaw From, but we die. You can't count on these AIDS victims to stand up when you need them. It puts a tremendous pressure on tne system of volunteers and workers, people who are working at rotten wages and stuff Like that, to provide necessary mandatory services. DR. ROBERTS: I hear one of the things you're saying is to some extent it’s been the people with the calling who have, to some extent, buffered the federal government £rom the consequences of its own underfunding? MR. DALTON: Suosidized it. MR. BATCHELORs Tnose thousand points of light. mS. DIAZ: That was onc of ny concerns in bringing up, Joe, you weve out, the demonstration projects because realiy the real Cry acound this country, not only of the four that are just apout to come in with the resuits, but of the new ones that are funded, is what happens after the demonstration? Where are the bucks that will support the systems that these COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 people identify in terms of gaps ana resources and the balance of professionais that we need? And the answers aren't there. And some of uS are getting pressure not only localiy, but in the horizon when we say what is the reali connitment of the Public Health Service of this country for service delivery around AIDS. It's just not there. MS. AFFOUMADO: I think it's amazing that we're still talking apout it. MR. McEVOY: I had a reali fundamental question, uSing the word early intervention, we do it because maybe we can extend life. We aiso hear the fact that there are some very interesting things we are shooting for which in fact five or Six years down the road that people actually have a chance to live through this crisis. The question of where is our obligation to keep quiet and not aliiow people to take an interest and maybe giving them the opportunity of survival. Do we keep quiet and we basically discard them? As a human being, where is my obligation to another individuai to keep quiet because it's a sensGitive issue pecause COPLEY COURT REPORTING _| 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 175 ImMayoe people don't want to fund it. And we talked about the Machiavellian modei, but maybe what we shouid do is create sucn an overwhelming daqemand that we bring the whole country to its knees. And it's the otherx extreme. I think for somebody who is affected voy it personally, some of it, it's nice to sit hece and talk about the crisis that looms, but what about the immediacy, sure I can taix about my life, but the empathy of really seeing what's happening to other peopie about me. Do I just close my eyes and say, well, again, the systeu isn't there to advise you, so I'm not going to advise you to get a test which might basicaliy be the opportunity for survival? What obligation do we have knowing what we have today to the American people? There are many people we taiked about, whatever course of action we take, tnere are gOing to be peopie who are unfortunately not going to survive this, any route that we take. What obligations do we have? DR. ROBERTS: To these who are at risk? COPLEY COURT REPORTING i sa sete te tee 2 ana MR. McEVOY: Knowing wiiat we have today, in many cusses, carly detection, carly intervention, there are things that can extend life, and why would we be wanting to extend life because there is a possibility of getting through this crisis because scientific evidence is telling us that maybe in five or Gix years there is hope. Knowing what we do know, what obligation do we have to people to informing them that tnere is a possibility that you can survive this if you go through the various processes? Paxt of that is we taiked about the social model, not aiways rn > do you need necessarily to be tested to start gen A a doing things for _ yourself that will heip. — ee nutrition, reducing drug intake, reducing stress, ee wrthout taking the test. Those things put you in a RN a good line to extending your life. The other thing is -- and that's part of the social modei before you go through testing. The other issue is, one, you have been tested and your T-celis are ina certain range, it's proven the possibility you can extend it even more. What obligation do we have to put back in place COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 for people, or do we have none? DR. O'NEILL: There is an attitude I hear not in this room but I hearc it sort of out there and have for awhile is that when you taik about early intervention, early intervention is discussed, when you talk about the medical aspects, actual just medical aspects of early intervention, there is a sense that someone that is HIV positive does not, is not, docs not really have a medical condition. In other words, we think of medical conditions that we are moraily compei:led to treat, we tend to think, it's easier for us to think of things that are very ocbvicus, lixe pneumocystis pneumonia or broken leg or something we can see, When we're talking about a medicai condition that's just diagnosed on the basis of a serologic test, in some minds that's a fuzzier condition. And X think there can be a sense that because that's a f£uzzgiexr condition, we may not have the same moral obligation to treat it as if it was clearly a treatable, clearly something that was an obvious, diagnosabie to the visible eye condition. COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 178 I just think we have to be vexy ciear and INake no mistake apout it, that with what we know now medically, that the condition of being nn, seropositive for tne virus, for some peopie, 1S a ———— i . a Ne medically treatable condition no different than —erre eee a On eh) any other medical condition. And tne anasogy i ee ——____, —_— would make, I think that we have a tendency and compensity to go around and say AIDS is like this disease, AIDS is iike that disease. That clouds Our thinking. But if you take the example of syphilis, for example, when you taik about treating Syphilis, we treat syphilis on the basis of a serologic test. And somebody comes into ny office with a positive serologic test for syphilis, that is a treatable condition, whether or not they have an obvious disease, DR. ROBERTS: Let me push you one second, Given what's nappened in Arizona anda Oregon in recent years where state funding for organ transplants or other treatabie conditions has been withdrawn under the state Medicaid programs, is it, where do you reach tne conclusion that society accepts the obligation to COPLEY COURT REPORTING 10 11 12 13 15 16 17 18 19 20 21 22 23 24 179 treat every medicaily treatabie condition? I mean, it seems to ime that wac the premise in your argument, that at 1teast some of society's behavior is inconsistent with. DR. OC'NEILL: Ioam not vealiy in a position to make necessarily an argument. But 1 want to be cleay that this is just speaking as a physician, that this is a mecdicaliy treatabie condition. If we as a SGocicty elect not to ao that, we ought to be cicar about what we're electing not to do. DR. FORSTEIN: I think Jim raises a very fundamental question. It nas to do with the difference between being able to help peopie learn what there is that they can do to treat themselves and get treatment for a cundition that is a medical condition but for which there are other than medicas treatments. And what it would es mean in terms of the long-term ethics of hoiding out a test as tne entrance to a System tnat then ee . for many of the peopie does not follow through —— enna with what it would take to do what we would like a Dnata as tnem to do. Co I think if you're talking about tne COPLEY COURT REPORTING testing, I'm not opposed to continuing to offer testing when it leads to treatment and, in fact, one of the things that we do best is to heip people use the test to generate treatment and ail that. But £ think it's also unethicai to say to someboay, since you're pregnant, go get maternal infant care to increase the likelihood of your baby surviving, out there being no piace for that person to go. £ think the dichotomy pvetween what we ethically have to do in one moment and what we ethically do down the road have got to be consistent in some long-term vision. I think it's just as cruel to Gay to eee people go get tested, and then if you'se ST positive, we'ii pay tor the £irst T-cell test to ee : tell you that you'iis be eligible for the AZT that ee we won't pay for, ana this is not fox people — ee - without insurance. I have patients chat have ~Shough insurance to cover their T-ceiis ana Demme ee = doctor's visits, but oniy 80 percent of their ~ __-— ZT, none of their psychotropic medications that they need, and they can't afford treatment, even eee ae with health insurance. Te Is it ethical for me to encourage a test COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 181 which leads to a recognition of a condition toc which we have some treatments for some peopic? L think that rather than take a kind of yes or no view of testing, we need to always put in the context of does the test enable a person to get the kind of care that would facilitate prolonging life, both in medical and psychologyical way. DR. ROBERTS: Isn't the isonic implication of that, however, tnat you wind up urging testing for middle class peopie who have insurance and who can afford care, not urging testing for non-middle class people who don't have coverage and can't afford care? DR. FORSTEIN: That's cxactly what we have done as a society, but no different £rom what we have done for every other medical condition, I am suggesting we have a greater ethical responsibility to put in piace basic health care delivery system. DR. ROBERTS: Iwas asking a Slightly diffcrent question. You nac said is it ethical to urg@ peopie to have tests in the absence of care. And I'm saying to you until we take care of getting a different Kind of delivery COPLEY COURT REPORTING system in place, 1f£ you answer yes to the uestion you asked, it's unethical to urge peopie Y to have tests if they can't get care, doesn't that imply that we limit testing to the middle class who can then afford to get care? DR. FORSTEIN: I think that's exactly what's happening. I think that's why the emphasis on testing is a misplaced emphasis. I think it shouid be on basic heaith care delivery so everyone can penefit for testing. MR. DALTON: The probicm isn't just testing. If you icok at any given cazly intervention, there is something apout allocation, AZT, clinical trials, fox those who can get into them. Insofar as we have the toois, how do we make them available to everyone? But assuming that Jim's point really was a little different, it wasn't at the level of politics, it was the level of an individual, i'm sorry I can't do anything to help you, help yourseiz until we have X number of SyStems in place, are you going to say to an individual, I'm sorxcy, you nave a fuli-blown AIDS diagnosis. As long as you‘re walking around secmingiy well, we can't heip COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 you. Or are you going to help then acip themselves? I think there is a very concrete illustration that Rona talked about yesterday and today. Except we're talking about poopie who are somewhere in between those things, people who are HIV positive put asymptomatic. We don’t know what to cali them, ill or well. Joe taiks in terms of treatments available, but that is sort of truc or not true. Maybe there is for a given person treatment like Pentamadine until their T-cell count is peliow 200, but Jim says there are other things you can do for them to help them deal with things, like maybe their nutrition, or having to think avout dying, or not having to think about that aione. We want to in a medical kind of frame call that treatment, otherwise we don't care about it. This gets piayed out in the law, of ail things. People can't get Medicaid in various —_—— states uniess they have an AIDS diagnosis. You © can't get into certain parts of the cccial _—) service system until you have an AIDS diagnosis. ‘enemies LL ae It was a very kind of restricted image. There aA Soe 183 COPLEY COURT REPORTING en ee pa ee ee t—(isisC i lle a Co 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 184 are a number of things we can du £o0r peopie short of an AIDS diagnosis, some of whicn may help then from getting an AIDS diagnosis, even if the results are being Poliyannic. MS. AFFOUMADOs: Couid I just ada something to what you're saying because I think there is another piece of this. For many of the populations that we are trying to provide “eariy diagnosis and treatment", there are aiso populations that you must remember have not had access to health care. So they come to us with many other medical problems that are not HIV related, that have nothing to do with HIV. For example, women have serious gynecological problems that are not, that are exacerbated by HIV but have been present asa medical problem for them before they were infected with HIV. For example, chronic PID and candidiasis infections that are not HIV related. Just to give yGu an anecdote to point up something very interesting that happened at Community Health Project, when we pegan providing medical assessments in 1985 of underinsured and uninsuced gay men and gay and bisexual men Of COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 185 color who also were underinsurea and uninsured from New York City, for many of them it was the first time that they had a comprehensive pnySicai exam. And we diagnosed early conditions fox example, like muitiple myeioma, which wouid probabiy not have shown up in these people until they were 40 or 50. And cardiac conditions, hypertension, diabetes, forget about the dental problems. Now, a lot of this is realiy a symptom of not having access to heaith care. And I'm not Minimizing what Jim is saying becauce I cleariy believe in holistic health care and aiternative ways of delivering services and self-help and ail of these things that you're taiking about. But, again, I want to try to bring you back to tne fact that these are populations tiiat have not had health care, and they are coming with a lot of medical problems, not just HIV. So you may not want to treat them early for HIV, but you've got to treat them early fox malnutrition and endocarditis, and hepatitis, and chronic gonorrhea that hasn't been t:ecated, ana PID in women, because your therapy, your COPLEY COURT REPORTING seme. nen 3 a a dette pe pone meet pi ee 10 Li 12 13 14 15 16 17 18 19 20 21 22 23 24 186 alternative therapies are not going to do a lot of good for them if they don't get txrcatment for some of the things that have disseminatea them health-wise that are not HIV specific. MR. DALTON: That's part of where fi was going. MS. AFFOUMADO: Please forgive me for being so strong on this "medical modei", but I think you have to understand that aii of these things f£1it into this package that the psychosocial and ail of these tnings zit into, also "your body is a temple" kind of iadcea. DR. ROBERTS: iI near you in some ways Saying that wnatever we do about tne financing system, we have to do it in away that allows these muitiple needs to be met. MS. AFFOUMADO: Absoiutely. And not just say early diagnosis and treatment for HIV because even though AIDS clearly ic the subject of this Commission, but that is oniy a piece of it. It's again, this total comprehensive thing that we've been trying to talk about. DR. ROBERTS: Other points? COPLEY COURT REPORTING 10 1i 12 13 14 15 16 17 18 19 20 21 22 23 187 MR. LEVI: There's something, I think a lot of this does come oack to £Linancing, but when we do keep taiking about we need all these services out tnere, something cven more basic is we neea our Public Health Service to acknowledge that even if they don't have enough money to do ali these things that somewhere along the line this is their responsibility. Ana when we have an Assistant Secretary for Heaith who tells the Congressional subcommittee that providing care services is not the responsibility of the Public Health Service, I think we have a fundamental problem, particularly when we have a Health Resources and Service Administration that does fund community health centers, If it is not the responsin:ility of tne Public Health Service to make sure that adequate services are in place, not necessarily g£inancing those individual patients’ care, but at least making sure that the structures and Services aze in piace, then I aon't know whose responsibility ict is. And I think that certainly one thing that the Commission can try to do is remind the Public Health Service of what its original intent and COPLEY COURT REPORTING i it ee, Be As es | i i i ei oi ot Charter is. CHAIRMAN ALLEN: Weli, they'll say it's the state's responsibility ana tne state wiil say it's the county's responsibliity. MR. LEVI: I know that's what they CHAIRMAN ALLEN: And tnere is no entitlement to heaith care in the United States of America, period. HR. LEVI: Ana that's a probiem. But there is a responsibiiity on the part of the Public Health Service to heip provice care services for those who are impoverisned, MS. BYRNES: And the legislative branch believes the executive branch has that responsibility because the legislative branch nas been the one that's been piecemealinyg the response together that the Public Heaith Service implements, but it's been coming Erom the Hill, not from the Executive Branch. That's partiy why it's so disconnected, MR. BATCHELOR: It's a long history. I worked in Puplic Healtn Service ages ago. When they startea dismantling the PHS COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 we 189 hospitals, Bureau of Health Care Delivery, it just got the Feds out of the role of aelivering health care. Tt was in the Nixon aanministxration that this edict came down, "thou shait not deal with direct patient care", It is not a delivery organization, not the Feds out o£ -- we're not going to turn that around, = don't think, in the lifetime of this Commission, or mayoe tne lifetime of the people here. But unaer the Constitution, basicaily it ends up being tne counties with the responsibility to celiver health care. Ultimately, it foiiows down -- DR. ROBERTS: I hear Scott was Saying to you there is nothing in tno Constitution which requires it. MR. BATCHELOR: But the responsibility ends up basically at the county level. And so if that's where the respeonsuivisity is going to be, maybe that's one of tune places we need to place special focus on for tie services area, If that's where the needs are and if | that's where counseling and testing and eariy intervention may be an entry point, tnat's a place to put special focus. COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 190 DR. ROBERTS: We have avout 20, 25 minutes left. Other points that peopie feet strongiy they want to put before us this afternoon? I assume that you guys, Lf we end ten Minutes early, you would just as soon start ten minutes early. MR. BATCHELOR: I can Say something else. LI think an important additionas issue, the issue is that peopie with HIV disease and AIDS, the spectrum, can contrioute a lot to the pubiic policy issues, the direct service issues, et cetera, et cetera. It's always unfortunate, to use the kindest of terms, when people with AIDS, as broadiy aefined, are the last to enter the public policy arena and the first to be toid that they are not invited, et cetera. They need to ve the first to ve invited because we have a perspective, while not the sole handie on the truth by any means, is a valuable, necessary perspective. Without the inclusion of peopic with AIDS and other people at highest risk groups, then the picture gets distorted, When CDC came up with its counseling COPLEY COURT REPORTING guidelines, which is an important issue for you, CDC is not reguiations, but guidelines for how to train and how to do counseling. These aren't regulations, but they have had a profound impact nationwide on what states or city or county decides to use and include in their training of counselors and what theixy requirements are fox the joo, in fact. People don't know. How axe they going to find out? So those guidelines are very important. They have changed over the years somewhat, but the early emphasis which came mostly £rom CDC, gather, was focused on sexual behavior change. earn aaa You just found out that you're testea, Mr. Jones. Now I want to tell you avout cafe sex. All Mr. Jones is thinking about is EF think I'am going to kill myseif. His penis is not going to arise for quite sometime. That penis represents death to him. So now the counseling is changed to focus a iittie more on living, on taking care of yourself, on feeiing the behavior change, and on dealing with the shock. But haa peopie with HIV disease and AIDS been includea in developing those guiaelines, we would have saia, safe sex is COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 16 19 20 21 22 23 24 ™ 192 not the issue today; surviving this news and learing to live with it is tne issue. So people with AIDS and HIV need to be inciuded in the policy and development process. CHAIRMAN ALLEN: I want to make a statement. Tnere iS a person with AXDS on our Commission. I think tnere has been a reai attempt to do that. But aS part of Che bn counseling, I'm humored by the fact that sonebody comes in and tests pesitive, one of tne £irst Oo things they tell you is to try to iower your —_— stress level. I think that's ciassic. — MR. DALTON: I have one otner response. A lot of people put this mecting together. The person who did the most is probably Jason Heffner. But one point in talking about the invitees, someone in the conference calied and Said what about persons with AIDS. I guess tnere was a talk about having somebody specific. And Jason basically said that at the tabie there would be picnty of people with AIDS who wiil be here in their capacity like youvrs. £ think that's what iS imporctant. There are pienty of COPLEY COURT REPORTING people with AIDS working througnout every systen that we've been concerned about, and tney do need to be involved. In theixr professionat Capacities, whicn are very much -- MR. BATCHELOR: In response to that, since I am the gay man, I wiii speak to that issue, too. There has been many, many gay men in positions of power and authority and responsibility dealing with health care issues and dealing with AIDS who were very, very fearful oo ee — about disclosing the fact that shey were gay men “—___ eee and, therefore, could not tell what they know would be the whole truth. Many peopiec, I have me sat in many rooms with many of the people here for years and they didn't know I was HIV positive because I was very reasonably scared to death to tell anybody. Peopie who are finaily out of the HIV closet, whether or not whatever other closet they might or might not have been in, put peopic who are out of that closet get a perspective ana Say it like no other peopic realiy can. DR. ROBERTS: I woulda suggest tnat Walter has provided us with a very sobering note, and I think a useful note in which to come to COPLEY COURT REPORTING 10 11 l2 13 14 15 16 17 18 19 20 21 22 23 24 194 closure on this part of the meeting because I think it's always risky when one taixs peosicy, financing, systems, institutions, to itose that Orientation tnat Jim also tried to stress fox us on the individuals and what it's like for peopie to move through the process, And to xemember that that's ultimately what the system is about, is the way in which it impacts peopies' individual experience with their own iives and coping with it. Just a brief word of thanks to alii of you for your extreme good humor and patience and tolerance over the last two days. I've had a very interesting time, and I thank you for your patience in putting up with my occasional attempts to produce a slightly higher rate of order. Mr. Chairman, it's ali youxzs. CHAIRMAN ALLEN: Thank you. DR. ST. JOHN: Mr. Chairman, so much of this discussion in the last two days has centered on our health care system in the United States, many people might be interested in a book cailed the “Right To Health In The Americas", COPLEY COURT REPORTING 10 1i 12 13 14 15 16 17 18 19 20 21 22 23 24 195 which iS a comparative study of heaith legislation in Latin Americun and North American societies. I think you might find it a very interesting book. I'm sure it's avaiiabie ata nominai price from the Pan American Healtna Organization. CHALRMAN ALLEN: Thank you very much. I do want to thank you fox your time ana wnat you've shared with us. It's guite a bit. We feel, at least I feel very overwnelimea oy our task, but you've helped ciarify some of the issues for uS and that was our goal. And wnen we get together, we're going to talk about it and see what we need to take back to the full Commission. Everything you said is making a difference, and everything you do makes a difference, And, again, thank you for your calling, again, as you go out among the people. Lit means a iot to us because it maxes a difference to us that we know that you're out there caring. It nelps our task, and we do caie, too, We'll do what we can to help stop this COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 epidemic, you. as I know you ali will, too. Thank (Recessed at 3:00 p.m.) 196 COPLEY COURT REPORTING 10 11 12 13 15 16 17 18 19 20 21 22 23 24 COMMISSION WORKING GROUP MEETING (Resumed at 3:30 p.m.) CHAIRMAN ALLEN: Basicauily, asa wrap-up, we want to hear what we f£eei are the issues that could be heipful to Jeftf I think it is, ana you talk about access to care se or services, and you taik about what F'1i cail wt ee training or personnei cS ~£~—_Lot +.—_eait+—it_ facilities, represent a triad. And there has to COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 be maintained a baiance between that triad; that the balance between that triad is going to change over time. At certain points in time in history, and it could be a year thing, but essentiaily what you have to deai with is within a hundrea doilaxc pot, how do you allocate that hunarea dollars between efforts at providing facilities, of insuring access, and of doing outreach. If you put it all in facilities, then the facilities are Sitting there and nobody is utilizing them. rf you put it ail into outreach, then you have a tremendous demand but no facilities and you have to balance it, and there has to be an analysis of where the adequacies are over periods of time in different communities, and within cither, A, periods of time and, B, different communities, there have to be diffrerent aiiocations. There ought to be somebody sitting around making a decision, that, gee, the problem this year or the next two years is we reaiiy have a problem in terms of access. We ought to scale down our outreach efforts until cuch time as we beef up the system to be abie to proeviae 202 COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 203 sufficient access. When we do that o¢c have it sufficiently in the pipe so that we can see in Six months it will be available, then we ought to go back, and so that maybe in year one you're talking about allocations of 20, 20 and 60, and as that system builds up, then you move the allocations around in terms of the Golliaxs. CHAIRMAN ALLEN: So ycutxe taaking about two things, at least I heard, out distribution of funds, a justifiaple distribution of funds, and that aiso includes planning, and what the heaith care planning is what Al said, we need health care planning and locals, and then the distribution of funds. MR. GOLDMAN: Right. What the problem is, as I see it, in terms of the federal government is that the CDC is sitting there with a function of prevention and outreach and Surveillance, ana that just deals -- access isn't my problem, it says. Then you have an AIDS program office that I thought theoretically is Supposed to deai with ali of the different agencies dealing with AIDS and HIV infection ana it's being able to say to CDC, hey, there is an COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 access problem this year or in the next year or two; some of the monies ought to be sniffted £Eron CDC's outreach efforts in order to be shifted to HRSA to provide the additional funaing for this. In a vational system, that's the way it ought to work. Ana I see no reason tnat we asa Commission shouidn't be advocating that. MS. BYRNES: But moze at a local level because the federal government can't say in LA this is the case and in Connecticut that's the case. The locai communities need to oe saying this year access is a real problem for wus. We want to use our dollars that way and we'li make determinations avout the aliiocation within that total pie. No monies go to the the ilocalitics as a total pot for communities to identify what their particular needs or priorities are, and testing shoula ciearly be one thing they might want to consider, but in terms o£ where that community is at and where the predominance vhouia go. MR. DALTON: But if the aoliars come from CDC, then it's going to be tilted. — eee ——— CHAIRMAN ALLEN: And testing has 204 COPLEY COURT REPORTING been federally driven and services have peen locally or state driven. MR. DALTON: Just a piecce of what Don said, which is whethes or not testing is an aspect o£ outreach. It seems to me there was a fair amount of talk about that today, ana certainly a fair number of people took the position that it's probabiy a mistake to think o£ ee testing as a form of outreach. certainiy is not a form of outreach in i . . ET re every community at every time. Some people said $e education is outreach. Some people said, no, — outreach is when you're taiking about something that matters to them, and as part of your cffort you aiso talk about HIV testing. L think it varies somewhat from Subpopulation to subpopulation. Apart £rom that, I think that testing is a dangerous form of outreach because it tends to put peopie in a position of having a potential 7 . CO a po record, assuming it's not anonymous, of HIV a pee Senne Status without necessarily attendine to the a, social consequences of that. it particularly — — tk puts peopie in a position of having the psychic COPLEY COURT REPORTING fLaliout of having oecen tested without necessarily having in place counseling and support groups and that sort of thing. Ana what I heard a lot of peovie say here is what's important is counseling. That sort of testing without counsciing is not a good thing. If the only way to get counseling is, with OunreL ee —~ testing linked with it, then that's the case, py {— ™ « a, you_still have to be carefui that the point of ee the testing is not just to get the blood to do we epigimiological studies or in ordes to track oH partners, which is pack to Don's point. So far as this is driven by CDC, it's driven py the desive to track partners and count bodics. And what I heard people say today is, hey, iet's talk about counseling. Wee MS. DIAZ: But more than that, fo standards for that counscling because CDC ok told would not teli you that they really have absolutely excellent ways of disseminating kind of counseling resources. But as Jill said, she's never been asked what is the quality of that counseling, who is doing that counseling, how much time is being spent on tnat counseling. COPLEY COURT REPORTING 10 li 12 13 14 15 16 17 18 19 20 21 22 23 24 207 Someone mentioned briefly today tnere's probably more control in terms cf proauuctivity Standards within the 330 community-bvasea centers. So I think that if you just came out and said, our recommendation has saia we really think counseling was basically an essential component of any program where testing might be given, that doesn't do enougn in terms of the quality of that counseiing, who is doing it, and what are the minimal standards for it. Hy MR. DALTON: They can go to Ts oc 1 Phildadeliphia and see how many people you DUTEG seeing. If you're spending too much time, they Ought to be equaily able to create mechanisms for assuring quality of time. MR. GOLDMAN: I think that Hiv testing is in fact a@ form of outreach. You certainiy don't want to give AZT to peopie who are not HIV positive. CHAIRMAN ALLEN: Foren or outreach for what purpose? MR. GOLDMAN: Access to care. And the other point I wanted to make is that when anybody is talking about counseling, what the COPLEY COURT REPORTING a - py pa nome ‘ieee see devil are they taiking about abcut counseling? What they are taixking about counseiing is risk reduction counseling. MR. DALTON: No, not txue. MS. DIAZ: NO. MR. DALTON: That's what maybe CDC is talking about. MR. GOLDMAN: That's wnat CDC is talking about. And the kinds of things you'yxe taliking about in terms of the social, iegal discrimination kinds of responses are nothing more, I think, or can be effectively analogized to simply side effects sequellae of tne process of access to the system that the system, if it's done right, must include within it tne capacity to help alleviate, ameliorate or ciiminate. And that's of the system, which means the system would include that you're taiking aoout access to the kind of psychosocial care that a person who is advised that they are infected with the virus needs and requires, whether it be assistance in obtaining some form of otherwise avéaiilapbie public benefit or in obtaining AZT or in obtaining appropriate counseling, if you're icoking at it COPLEY COURT REPORTING 10 1i 12 13 14 15 16 17 18 19 20 21 22 23 24 209 from the perspective of the patient in terms o£ that. And who are you going to provide aii that bevy of services to? The services of making sure they are on Medicaiu if Medicaid is available, ox making sure tney have access to housing, how are you going to define the population that that system is going to serve, except those who are infected with the virus and how are you going to determine wno is infected by the virus without doing a test? So in that sense it's part of Outreach. MS. BYRNES: Zt seems to me that there is an agreement of that, and could pe one of the things that the group could say is that maybe peopie always initially thought that it was outreach, but that clearly among the group o£ people who were here, there wasn't ayreement on the fact that testing was the £ixst step of outreach. In fact, it was step 4, 5 and 6 £or some peopie, and that outreach would be telling people, A, this is. where you go for wasic health care services; B, did you know that in fact there even are therapies or treatments tor HIV, that COPLEY COURT REPORTING ge Oe Cts, lc tie 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 it's not a pure death sentence; C, why would you want to consider getting tested or do you know what the tests are. I mean, I don't disagree with your point at all. You clearly feel strongly about it. SO did other peopie. I think an interesting outcoijie of the meeting was there was not agreement on that. CHAIRMAN ALLEN: Ana I would iixke to go with D, and that's where outreach begins, consideration of the test. MR. DALTON: I think aii of this is what people mean by counseling, not to CDC, put that's why it's important to put some content of what we think counseling shouid mean and the kind of counseling that must attend ali testing. Outreach is obviously a mischievous term because outreach for what? So in terms of our own taiking about the subject in our reports, we need to be xather Clearer about what we mean by terms iLike outreach, which have multiple meanings ana are ambiguous, and terms like counseling. Whatever conflict appears would dissolve if we just took 210 COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 211 the time and sort of specify. CHAIRMAN ALLEN: So would you Suggest Jeff work on a glossary of some sort? MR. DALTON: No. Aii =I mean is maybe we'll use words other than tnat. What often happens in the law is you diten the terns that become encrusted and ambiguous ana fina new terms. CHAIRMAN ALLEN: So what wouid you Suggest our recommendation be, this isn't haxra and fast, nut the direction of our recommendation ror the counseling? MR. DALTON: Actually, I thought thaf Mindy Domb had a wonderfui thing, XY could take it right off of the court reporter's tape. MS. BYRNES: And Jili, too, artictwWlated about four or five things. " : ehank one important thing I heara, particulariy yesteracaey, is tnat counseling and systems of support for those that choose to be tested or not to be tested need to be locally and conmunity-based diiven ana may RT represent a whoie variety of configurations ana Ee aa are not necessarily tied to structures put rather COPLEY COURT REPORTING i 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 212 to supportive mechanisms or microcosms witnin UX er ay a each community. a LI think IT heard in respect to counseling that necessarily we're not talking aboue counseling tnat wouid occur at a specific site connected to testing, but that counsciing about the test might be avaiiable in numerous different settings and not necessarily needs to be tied to a facility that is testing. MR. DALTON: Right. Taney taiked about going APA ios. wz “WS. DIAZ: Or street. MR. GOLDMAN: I think, may I Suggest that I've always thought in my mind ana maybe that's not a good way of describing it, but I've always thought in my mind the ditference between heaith education and counseling is that health eaqucation is directed at a wider audience, whereas counseling is essentially onc-on-one kind of thing when you're talking about giving intervention. If what you're Suggesting is tnat pefoce we talk about HIV testing, before we talk about counseling, we ought to be taiking avout hnealth COPLEY COURT REPORTING education, then If think that you're absoluteiy right. MS. DIAZ: As a healtn educato:z, may I speak about the virtues of hea:itnhn education? Basically what we intend to do in health education is behavior change. We have identified a positive behavior change. Pox example, stopping smoking. The healtn educator . \ ' . 3 ” 8 in wns audiences would give you the benefits as weli as the detriments of continuing to smoke and so forth. Within the arena of counseling, basicaily we heard today ana yesterday that the person might be presented with the options and consequences, as you said, for, in tinis case, being tested and not tested. So we are not in any way pushing it, a desired outcome, which in health education we are, because we are trying necessarily to change behavior. That is how f see the difference. CHAIRMAN ALLEN: In the scheme of ail that we heard today, what proportion of the energies that our working group wunts to concentrate on counseling, and for Jeffi's COPLEY COURT REPORTING understanding, do you see that as one component? What are the otner issues? MR. STRYKER: You might sort of look at some models o£ counseling. Someone was speaking of genetic counseling. When Eunice was speaking I was thinking of the notion of value free counseling in genetics, that a counselor can just present all the numerical information and let the couples sort out between themselves wnat kind of choices to make. It used to be a f£aixrly fetching model. I think peopie more and more realize that there is a lot more to the counseling dynamic. ~ — And there was some talk around the tabie about offering testing as an option versus a coercive setting for doing that. —__/ CHAIRMAN ALLEN: But do you see ~~, that happening now? We don't counsel lixe that with giving the person the option of how to live their life in this issue. MR. DALTON: Wnat -- CHAIRMAN ALLEN: I'm saying tne mentality of the counseling, of the sehavioral change, these are the options, It's not vaiue COPLEY COURT REPORTING 10 Li 12 13 15 16 17 18 19 20 21 22 23 215 free, MR. GOLDMAN: But that’s pbpecause the purpose of the counseling is not to help the affected individual but to change that affectcd individuai's behavior for the benc£it of a third party. CHAIRMAN ALLEN: Exactiy. MR. GOLDMAN: And I'm not saying that that is necessarily wrong, but I’m saying that’s not what's advertised. MR. DALTON: Let me ada to that. It’s either to have that individual change his er her behavior for the benefit of a third party, or ee to put the "counselors" in a position o€ ee —_ informing some third party. It seems to Me that's what CDC and some others mean oy SO counseling. en Now, in terms of the folks around this room who do counseling, that's not what they mean. I guess my thought, Jeff£, is vather than starting £rom models down, there is writing out there apyout what pcopie who are counselors are doing. Iomean, that is very HIV specific, what do you do when someone walks through your door. COPLEY COURT REPORTING i a i MR. STRYKER: I was particuiariy disturbed boy what the CDC official had to say about "we can't have a counseling cop", as if we needed a Fea in the room with the two people to know what’s going on. It seems like there should be some basic empirical indicators. I hear a lot of pcople Still getting their test results by mail, and there's this saw by now with CDC, of course we're in favor of pre- and post-test counseling. Well, no one has quite set out in terms of what that means, Go you get your tests three weeks later, in person? When ZF was tested and counscled, our pre- test counseiing was in a group of 75 people. You came back a week later, you got your results. They read out your date of birth, which is horrifying, to us@é as a number So that everyone knew how old you were, which is worse than whether you were positive or not, and then you went down and got your results. Ana you coulda cell, it's a smail town, and you covu.id teli whether people were positive or negative by how COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 1& 19 20 21 22 23 217 guickly they came out of the counseior's room ana in what shape. So here is a model of an ATS anonymous system where everyone knows each other, ana anonymity is out the window. But tnere are certain benchmarks, in terms of being counscied, they could be telling us as the test moves out into a test system into an STD and famiiy planning clinics, how is this working. MR. DALTON: There arc Many number of things we could say explicitly avecut that, or maybe we want to create a mechanisn for someone else saying thac. I think we necd to fina out _—_____ sen what the CDC's counseling guidelines are insofar ———ane, eee as some exist. en MS. DIAZ: For both. MR. DALTON: For botn STD clinics =— and alternate test site clinics and see if they ————__ tis —_—_—— a s are the same, anda see if some of them are ata Oe eee ee level of generality that it allows ws this range aaa of what happens, MS. DIAZ: It's a state decision and a locai county decision as to how that is implemented because there are actualiy ptaces in COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 218 the country where the pre-counseling is done by Or vceo, Smast ten-minute videos. MR. DALTON: One step is to find out what the CDC is requiring at the federal level ana what theix explanation is £oyv the division wetween them and state and Local in terms of who dictates counseling, to iock at what's happening in the sort of better and worse programs and make some recommencations about what the guideiines ought to be that can we implemented at the federal level. It seems to me that the CDC can condition its money for ATSs and STD money on counseling ~ ee eee hat meets certain standards. a eee MS. BYRNES: So, Harlon, I'li write to you and say, yes, i did it. MR. DALTON: I agree, and we ought to focus a bit on monitoring. The bit apout the cop, they have cops in Chicago, appazently. L mean, in Phiiliadeiphia, seeing whether people are spending too much time on counscling. It seens to me they can have the same kind of cop, if you want to call it that, figuring out whether counselors have been trained. Certainly you can COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 219 have the verification of that, and what kind of training. CHAILTRMAN ALLEN: I also think, I don't know if that passed us by, but when we write CDC to ask that question, I have some others for CDC, but your point was well made of ATSs and STD clinics, What is happening in the ATSs, but what are your standards in STDs for HIV counseling because we're shifting the money. MR. DALTON: I think we shouid also (ee ask them what was the basis and what was the an — information base on whicn they made the decisions ~~ Eee to start pushing in the direction of STD clinics. Was that pased upon evidence of thre SNe Capacity of those clinics to do counsciing? $$ MR. GOLDMAN: I think they said that was the basis of a beiief that they would have a higher head rate there. MS. DIAZ: It's deeper than that. Something that didn't come up is that much of the AIDS progrim money within CDC has shifted in the last year under STD. £ think that you have to understand that that in some way could be tied to a decision to beef up the particular HIV service COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 220 within STD clinics and other -- MR. DALTON: Insofar as we got an answer and it was implicit, it was tnat we will get a higher rate of people who axe HIV positive there and presumabiy then we can Locate moxse partners and somehow encourage peopie to modify their behavior to protect tnird parties. But it had nothing to do with the fact that STD clinics could provide counseling or referrai. Aii I'm saying is that I think we needa to get from CDC, to have them document their perspective on what this money shouid be spent for, so if we Say it should be something different, we can articulate different from what. DR. ROBERTS: I heard then say something a little different. I neazsa them say there were different populations which were accessed through the different groups. So it's not simply the total number of peopie, but it's sort of spreading the testing around so that we hit different, I'm not defending it, I'm just Saying if we're going to characterize their point of view, it wasn't just the hit rate, out it was who you hit. COPLEY COURT REPORTING MR. KESSLER: It was also a siting citing issue. Wien tney needed to expana the ATS, the next layer that was obvious were the STD clinics. And they didn't have the siting problems that they dia have on the f£i«sst vound of ATS sites. MR. DALTON: Let me teszl you where my concern comes from. Jiili mentionea she had set up an ATS system and it was there when pressure came to switch HIV testing into STD od Clinics. In New Haven, Connecticut the STD See cer clinic and ailiternate test site clinic were in the Same building, two Goors apart, in tne Health Department, I might add. We're not taiking about Siting issues, we're not talking about different populations particularly. And in the STD clinic, ‘“eeenameca there was virtually no pre-test counseiing IEEE nd aera een — essentially, and truly minimal post-test counseling, no rveferrals. ne The people doing the work were not peopie who came over £rom tne aiternate test site or people who were trained other than a day's training roughly on HIV, and it was just an additional thing to the laundry list. Sen Te COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 222 So that at least in that particular concrete example, it seems to me that the justifications, that we are teasing out what was said by this CDC representative, couidn't possibly nave played out. So it ieaves me, not that one example aione, willing to be skeptical, shali we say, about tne rationaie. CHALRMAN ALLEN: Just to stop fer a second and say we've got about thirty minutes until we need to close, I know some of you have planes. We have concentrated a lot on the counseling issue. I want to make cure we get everything we want, to emphasize it. DR. ROBERTS: I have to leave. I just want to thank everybody particularly for putting up with my efforts to simultaneously give you as much of the time you wanted and to teil you now much I enjoyed this. CHAIRMAN ALLEN: We nave taiked about the counseling and CDC. MS. BYRNES: And I asGuine that's like Section No. 2 of whatever the size of this report is that we talk about the dicagrecement or COPLEY COURT REPORTING 10 Li 12 13 14 15 16 17 18 19 20 21 22 23 223 at least different points of view about whether to test, where tests Faults on the continuun, whether or not it's the f£ixrst step or third step. But if you choose to test or in any setting where testing services are proviaed ox where HIV or AIDS services are proviced, this is what we understana counseling should entail. These are the components and these are the standards that should be in there. Does that sound -- MS. DIAZ: A bit, except donit negate the fact that it was Saia that counseling about the test can occu outside of the agency. MS. BYRNESs I agree with you completely on that. CHAIRMAN ALLEN: That's gooa,. MS. BYRNES: Separate g£ron the CHAIRMAN ALLEN: And we've got Don's triad. MS. BYRNES: Outreach access Faciiities? MR. GOLDMAN: Yes, and I don't mean the kind of education outreach. mean py COPLEY COURT REPORTING outreach patient identification in terms cf who was going to be proviaed the broad outzray of services. MS. DIAZ: In religious terns, evangelism. CHAIRMAN ALLEN: One ot the things, I'll just chime in one of my concerns, is that of > HRSA and the defunding of HRSA. Theic evaluation SF ae . component of their demonstration grants, what are nr ne nee —w ———— ee they evaluating, whether they workea, whether the ne on, money was spent properly, whether the HIV — ————_> infection-svate decreased? I wouid like to see that --—__—__- A ane MR. DALTON: What is it that's being defunded, what kinds of -- CHAIRMAN ALLEN: Weli, I agon't know 1f we can do it outside of agency terms. MR. DALTON: I'm asking, they can Switch around what HRSA does as against any other agency. But implicit in what you'sce saying is that there are certain kinds of services or certain kinds of something that's weing devalued. CHAIRMAN ALLEN: Case management is being devalued, heaith planning. So aii Of thes Cc COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 225 MR. DALTON: What eLse? CHAIRMAN ALLEN: Home care, AZT. What else? There's some others. i'ian have to think back. But I want to get the point across that here we are without substance with eariy intervention, and we're coming up witn this message. I think we need to ask ERSA some guestions. I've got some questions I'm going to send to them and their starr. If you have some questions for them, maybe we can get back and incorporate into some type of format for recommendations. But aiso in relation to CDC, MS. DIAZ: One of the things I recommended to our newly-formed HRSA advisory group is that we might want to Look at the results of the first four demonstration projects ang some other mutual issues of concern oetween the HRSA advisory group and this subgroup of the Commission, and they were very much in favor of doing that. So we don't have to go through some of the same -- MS. BYRNES: What is tne time iine COPLEY COURT REPORTING on that? When do they expect that ongoing @evaiuation to be completed? MS. DIAZ: The three years are up. MR. STRYKER: There are case studies, and we provided the LA case study before the hearings. Those are available for ali four cities. They tend to be descriotive rather than analytical. MS. BYRNES: Is that it? MR. STRYKER: That's ail that CHAIRMAN ALLEN: ¥ donit think it's MS. DIAZ: No, there are certain common denominators. For example, what Don is asking about is how a community has ocen aple to be integrated in ongoing planning fer HIV is definitely an evaluative part of those demonstration projects. In other words, a community tnat was given a HRSA demonstration grant and was not able to get their act together and coming and identifying needs, identified gaps and what it needs in terns of future financing has simply not done the job. COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 227 CHAIRMAN ALLEN: Weli, from what I understand, Larry, you may have some insSignt into this, first off I ago know this: Tnat HRSA is now going to fund 16 to 18 Gut of the 25 they Started. Ana there is not really a ciear understanding of who or what criteria they are going to use for that funding; and tnat many of the demonstration money that went out has not been that effective. It seems that -- have you heaid this? MR. KESSLER: No. CHAIRMAN ALLEN: Like some of the RWJ grant money that went out that triea to get up case management arouna the country, some of those were dismal in tne response, But i'm curious of the evaluation tool. xr Cucious, along with moving in the HRSA questions, is what are they going to do for states. It they are backing off with this demonstration money, who is going to pick up the ball? Who is going to be the technical advisors to the states and the local governments?. The person coning in from Missouri that is head of HRSA, before he got there was state that saia HRSA needs to get COPLEY COURT REPORTING | 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 ee EE EE Eee LE 228 involved with states, but HRSA says, no, that's not our job. MR. DALTON: Just what is -- CHAIRMAN ALLEN: The community-based organizations that are going to be funded, they are backing off. Whe is going to pick up that ball? Who is yoing to make sure that's going in when there are block grants going to the states and counties? There's not any strings attached to that, but there isn't any technical assistanee to advise them or help trem assume the HIV leads. You can't monitor biock grants because it's given to the states. Can you monitoxy it? MS. BYRNES: You shouia be able to. CHAIRMAN ALLEN: You shouiad be abiec to, but you don't. MS. BYRNES: We don't do it in any block grant program, but it's certainly possibic. CHAIRMAN ALLEN: Exactiy. That's where the problem is there. MR. GOLDMAN: I think theoretically it's a requirement on the part of the state to give the Feas a plan as to what they are going to COPLEY COURT REPORTING —, 10 11 12 13 14 15 16 17 18 19 20 21 22 23 eo x 229 be doing with the money but there's no way the state and the Feds have any autnority to say we don't like what you're doing. I guess £ count health care monies to buiid, for the state to puild a space -- CHAIRMAN ALLEN: But how that's utilized, HIV is not a part of that planning process. So that is some of the things that I think that I would iike as a working group for the Commission to write HRSA and say we would like some answers to these questions, And I think that we aiso have to ask some questions to CDC, not only about counseling put do you feel that this is an ethical response to, an ethical endeavor to advertise céeriy intervention if the services aren't there. MR. DALTON: That seems to me iixe a profoundly unproductive thing to do. Let me tell you why. I think asking somebody whcthor their response is ethical, nobody is going to say my response is unethical. CHAIRMAN ALLEN: Okay. Let's rephrase the question. MR. DALTON: Secondly, I think it's ee ee er Career COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 230 a mistake to try to get CDC to criticize itself, however you frame it. If we £ind from CDC what they are doing, we are in a poSition of maxing a judgment about whether it's good ox wad. That 18, we are perfectly capabiec of saying that advertising early intervention witnout having services in place is a pada thing. We aon't neea them to say it. CHAIRMAN ALLEN: I stand corrected. I feel iike a sense of urgency that they are about to come out with this in two months, So there is that sense of wait, stop, look and listen. But you're rignt. MR. DALTON: Let's talx about how we do that, but I'm suggesting your particular procedure is not the way to do it. Let's taik specificaily about that. Maybe as ta« as the 1990 America Responds To AIDS campaign we shoulda ask the relevant government officiais to come to Our meeting in March, the full Commission meeting, and to show us and to have an exchange there which is pretty quick in the scnenc of things. And Maureen hasn't fallen over yet, so it seems to be within the realm of pussibility. COPLEY COURT REPORTING It seems to me the questions put to CDC are much narrower than that, lixe what are your standards for the following. For exampic, earlier on in this mecting we startea taiking about standards for labs, the @agdifferent kinds of tests. One thing that I would at iscast iike to know is is there a role that CDC can perform better in monitoring what it is that labs do. MS. BYRNES: I think Doctor Konigsberg wants to look at that issue when he looks at all of this stuff in the puoiic heaith context. So you may want to ask tne CDC -- this is an informational thing. CHAIRMAN ALLEN: I just want to, as a point of clarification, you're not disagreeing with the content; you're disagreeing with tne strategy, is that what I hear you saying? The content of saying we've got to deal with the America Responds To AIDS and the early intervention message, you agree with the content. You're saying the strategy you would like to see agifferent. i agree. Instead of a letter, you want to Say -- MR. DALTON: Weli, if we're going COPLEY COURT REPORTING 10 1i 12 13 15 16 17 18 19 20 21 22 23 24 232 to write a letter, I think it shou.e oe different than that, out I think we should boring it before the Commission. CHAIRMAN ALLEN: Anything @1se? Those are my issues. MR. KESSLER: In terms of we started out earlier about listing some questions we didn't deal with, did anybody say that we didn't deai with the whole guestion of testing in the military? I see that is pneing aifferent than testing in the Civilian population, cGiightiy different pecause of the reasons, tne actuai stated reason is different than prevention. MR. GOLDMAN: We really only discussed at this meeting instances in which the stated reason for the testing was in a context of care of patient being tested. And ali the other issues involved in testing, whether it be blood, Military, prisoners, immigration, prevention, risk reduction, behavior changes, partner notification, issues of name reporting for purposes of partner notification, we never discussed, MR. STRYKER: I have a littie bit COPLEY COURT REPORTING 10 11 12 13 14 L5 16 17 18 19 20 21 22 23 233 ©£f concern because we had some people who weren't able to come, we did not try and stack who was around the table. But it seems like part of the consensus that what our moderator was nervous about was an artifact of people from urvan centers who had a lot of agreement about what they were up to. My sense is that the testing juggernaut is really picking up speed, whether it's the test moving out of ATS into other sites, ox physicians wanting the test to be incorporated more as a standara battery of tests and treated more Like CBC or other normal blood assays, and partner notification. I think Marschali, of asi the many metaphors we were treated to, I think Marshali's one of the test as a@€ lightening roa I think is something we have to face as a reality because it's certainly a focus of a lot of lLegisiative action, and it's a £ocus of a lot of public health strategies and some stuff we didn’t get on the table. I think some o£ them are already loose issues. Whatever the rationale oehind the Militag issue is, it's underweigneda and there's Y COPLEY COURT REPORTING TI carr eid ee al 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 234 not much you can ago about it except to learn from it, maybe. But there are other features of testing that we weren't able to take up. MS. BYRNES: Again, those things will be helpful, I think, to some of the issues that Doctor Konigsyezy wants to look at in helping him identify what are the issues that perhaps couid be discussed or looxed at in another context. MR. DALTON: Could you teii me? CHAIRMAN ALLEN: In what form? MS. BYRNES: Doctor Kouonigsperg very much wanted the participation and presence of public health officers so that you got the view and the perspective of the locai ana state pubdiic health officers. And I think -- MR. DALTON: To deai with what issues? MS. BYRNES: Testing would be one, a big one, CHAIRMAN ALLEN: The one? MS. BYRNES: Big one, there are others. MR. DALTON: Diane Ahiens' group, Tf COPLEY COURT REPORTING thought hers -- MS. BYRNES: We looked at mayors, county officials, and at the entire epidemic, not just particular issues that pubiic heaith officers most recently and nistoricaiiy have been CHAIRMAN ALLEN: But explain wnat form. Are you talking about a fuli Commission meeting? MS. BYRNES: It’s not Clear. He's talked to the Chairman about the possibility of another working group looking at, among others, testing as an issue with a variety of public health officers. MR. DALTON: It seems to me to taik about testing or any of the othes activities, in a coneext of which the meeting is predominantly or solely public health officers is absura. Et seems to me if we are worried about having a meeting adaressing the same issues that is dominated by, let's say, community-oascecd service organizations, it seems to me it’s ene sane phenomenon. MS. BYRNES: But, Hagion -- COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 23 CON MR. DALTON: Which is why we wanted Konigsberg to be nere at this meeting. MS. BYRNES: And planned on being here, and so did Fred Wolf. For whatever reason, some of those people were not able to be here. MR. DALTON: Fine. I'sa saying that to Simply have public health officers talking about what policies should be with respect to reporting or epidimiological concerns or testing is absurd. MS. BYRNES: My suggestion would be that this may be a discussion you want to nave with Doctor Konigsoerg and tne rest of the Commission in March when you report on wnat happened here, what's the outcome, what do the rest of the Commissioners feei what needs to be done. MR. GOLDMAN: Why is it absurd? ~ What's absurd? MR. DALTON: What iS apsurd apout it is -- ° MR. GOLDMAN: What is it tnat's absurd? MR. DALTON: I was going to say it COPLEY COURT REPORTING is absurd because MR. GOLDMAN: No, what is it absurd? What are you referring to? MR. DALTON: Having a meeting, having a working group of just pubiic heaitn officers. MS. BYRNES: I agon't want to misrepresent him. He may also think it way be appropriate to have other people there as well. (OLE the recora). MR. DALTON: Putting tugether Don's comment and Maureen's comment, it seoms to me when we report to the full Commission what we ought to say is we wanted a meeting in which people with diffexvent perspectives on the problem were in fact represented; that -- ana indeca we invited people with that in mind; that people who bowed out seemed to have different perspectives, that we want to fill in that perspective. But Our sense of these issues that they are ones that we have to need to hear people from a variety of perspectives on, which is the point Z'm making. MS. BYRNES: I'm with you. I don't want you to f£eei that I'm suggesting something COPLEY COURT REPORTING different. MR. DALTON: I'm Gaying © think we can reflect that in our report; that is, indicating the shortcomings of this meeting is taking on ourselves the very Same point I'n making. MR. KESSLER: XY don’t think it was necessarily amistake that they weren't here. I think in part those who were here, there were a couple of public health people here, aon’t ilike dealing with the menu that we dealt with. They like to Simplify it. Theiy focus is much more easily put and simplified by saying we're protecting the public health, and they taik about transmission or whatever. But we were talking about psychosocial issucs. How many public health peopie taik apout psychosocial issues of testing? Taney taik about prevention and epidemioiogy and Survcisiance. And you can read it on the face of Denman Scott, that this was superfluous as far as he was concerned, Al Plough got in because he's a planner and public heaith person, MR. DALTON: I'm glaa you mentioned COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 239 that, that we dia have some public health peopie here, including ASTHO. CHAIRMAN ALLEN: And John Ward is of the public health reali. He's been a public health officer for a long time. MS. BYRNES: And Joe O'Neill. CHAIRMAN ALLEN: If they want another meeting, that would be redundant. MS. DIAZ: A focus on another task force may be very devisive. It certainiy couid put us in a situation of this Commission having a public health task force with a view on testing. I think if this same group has to hear additional input from the CDC and public hnealth officiais, it would be very interesting and complimentary in many ways. MR. GOLDMAN: I think we can effectively say, and if we carefuliy limit what we say, I think we can effectively say that where and in those circumstances that the primary purpose, thrust, advertised goal and everything else of testing is in fact to proviae an avenue for access to services, that it is a mistake to do so and to set up a program without fixzxst COPLEY COURT REPORTING —_ 10 11 12 13 15 16 17 18 19 20 21 22 23 24 insuring that there is some kind of xcasonabie access; that that has a certain basis woth in terms of fairness and cguity as well as in terms of common sense. It’s Silly to put vesources into an effort that's designed teu promote access, if in fact the facilities aren’: tkrere to access. Anda, sco, whatever perspective you may look at it from, if that's where you're coning from, then you have to insure that there has to be some reasonable levels of access before you use that as the basis. MR. KESSLERs I woulda .ikxe to amend that a pit in that uSing your approach, you can also, in addition, then do surveillance and epidemiology. CHAIRMAN ALLEN: Suxce. MR. KESSLER: Whereas sometimes it’s reversed. But when you reverse it, you don't necessarily do the other. MS. DIAZ: I think we ougnt to get into the finai record that a couple o£ peopic Made statements about their desire oz wish that by creating a greater demand for testing that COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 241 this might drive a creation of a systen of delivery ana response. And I think that has to be mentioned pecause we can't just close the door to that particular option. Some people believe that by creating such a large demand for testing services, that that in fact may drive government, local groups and nealth systems to develop. It was said and I think it has to be represented. I'm reflecting what was said, I'm not necessarily Guying that's my point of view, bout £ don't want tnat to get MR. GOLDMAN: My response to that is that given limited resources, that it seems to me a higher level of priority to insuxe the access, to put money into and to improve access to facilities for those who you are in fact testing rather than to seek to test more and create more and delibcrately not putting money into the services that are provided te those who in fact were tested. And that that as a-- and that it is a cruel. and inhuman political use of people to use them in that way as a@ political device which is simply wrong and, as far as I'm COPLEY COURT REPORTING concerned, immorai. CHAIRMAN ALLEN: But we neea@ to address what I hear Eunice saying, and that can be a response, but that needs to be at least addressed. MS. DIAZ: I'm Gaying there were a number of peopie here, and I neard it over the two days, and they said it not oniy publiciy but also separateiy to us that they are hoping that the hope is that by creating a great demand for testing services, this might pusn the whole program of early intervention or access points through the health delivery and a response system at the local ievei for deliverance of that, or meeting that demand, MR. DALTON: And there are a difference of opinions among people around the round table about whether that was a good idea, bad idea, a workaple or not workabie idea. There was a fair amount of discussion around that, and we certainly neea to reflect that. I just want to say one othee thing that doesn't follow from that. It was suygestcd earlier, I think by Larry, that we never got to COPLEY COURT REPORTING issues iike partner notification. I'm not sure that's true. Jeff, you should take a look when you look through the many volumes of the secord of this meeting, the extent to which people talked about that explicitly. But it seems to me it was certainly impiicit in a lot of what peopie had to Say; that is to say, people were Saying in effect, we don't think testing should be used Simply to drive something like partner notification; we think testing shouid be used to, as an access point for care, for psychosocial care and medical care. I think that this working group needs to tease that out and to talk more explicitly and at greater length about partner notification and HIV, mandatory HIV reporting. But £ think this 15S part of the same set of issues that we've been talking apout for the same two days, somewhat buried, but somewhat there and implicit. I dontt think this is an issue that gets split off from the issues we've been talking about and should be dealt with solely by public heaith officers looking through that single perspective. COPLEY COURT REPORTING a 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 EEE EEE EERE EDEEI EE EERE IEEE EEE EERIE EIR IEEE IEEE EEE TEETER EE IEEEEEEE'S—C EEE) IRE EOE IEEE EEE EEE EE 244 CHAIRMAN ALLEN: I think that we can tap into that with Alan Hinman's testimony and Jeff's questioning about the £unding ana how much is going into partner notification as opposed to other services. MR. DALTON: Which is, by the way, one of the questions we should follow up on. MR. GOLDMAN: I think, Harvlon, theo objections that we heard to the partnex notification was not that partner notification was inherentiy bad, but rather that partner notification ought not to be viewed as veing a counseling service to the HIV positive person who is under care. CHAIRMAN ALLEN: Or d¢eiving the system. MR. GOLDMAN: And that there may be a different purpose invoived, a different function invoived, and it is just simply not part of that care and service. MR. DALTON: You're rigit. Ana I was much to imprecise. My only puzrpese for the comment was that we were talking about partner notification, at least its relationsnip to the COPLEY COURT REPORTING 10 11 12 13 15 16 17 1& 19 20 21 22 23 other things we were talking about. Ana I don't want to give up partner notification and mandatory HIV testing as our concern simply because we didn't deal fully with the issue this time... MS. DIAZ: i have one thought before I go, but I don't think we've saia anything for the final record awout the concern expressed by Marie and Romeo and others about what testing may mean by the government ox encouraged by the government to disenfranchised ana minority, vacial and ethnic popuiations, who are many times living from day to day, looking at how they can survive, in terms of poverty, food needs, child care, and other kinds o£ priorities that a person in a certain socioeconomic status in this society may have to just for the sake of Survival be concerned about many other things. Testing may not pe a@ priority or may not be viewed with the same enmnpnasis. And the fact that the government is encouraging that person or looking over to see that they get tested actually nay sena even more resistent signals or put up many bazrevciers, this COPLEY COURT REPORTING 10 11 12 13 15 16 17 18 19 20 21 22 23 24 246 is what we're interested in, are you going to be tested, versus you don't have fooag on your tabie, or there is no piace to take your chiidaren to go to a clinic yourself. So there are many other priorities in terms of disenfranchised populations in viewing the whole test. I think Marie Gaid that. MR. GOLDMAN: I thinx the important thing that was said there, or that & got out of it, was that it ought to be those conmunities that make the decisions as to what to do. And it may weil be that a given community may weil maxe a decision but the most important thing is not to qo any HIV testing or minimally oz unaggressively Or only on request, and all of its resources ought to be put in terms of child care ox health care facilities in that area, MR. DALTON: It seems there's another practicai consequence of this. insofar as we are accustomed to thinking about putting AIDS money or HIV money into ALDS-cpecific Organizations or institutions, that imay not be an altogether sensibie strategy in communities of color or other piaces as well. COPLEY COURT REPORTING 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 247 It may, for example, make sense that the organizations within a given community that do HIV counseling would be the Head Start Progxaia or the program that works in other social needs as conceivea of ana cxperienced by that community so that someone sitting down to talk to peopie about their food needs or child care needs or whatever, during the course of developing a relationship with somebody, then inay counsel about HIV as well and get some HIV money because they in fact are the ones who are in the best position to get the ear of that person because they are taikxking about HIV in the context of a social -- MR. GOLDMAN: But I think the Minority communities may have a difficuit decision to make, But I don't think they can Say, on one hand, that we want our fair share of the AIDS money; and, B, once we get it, we want to have the right to decide how to spend it, including spending it on aceas that aze renote from AIDS -- pecause those are the areas -- MR. DALTON: That wasn't my point. My point was if a Head Start center or a church day care center or an organization that has COPLEY COURT REPORTING 10 11 12 13 15 16 17 18 19 20 21 22 23 24 traditionally oeen involvea in a set of otnex concerns that are of importance to aifferent communities says we want some AIDS money because we're going to foid that into cur other activities, that should be something that merits respect, and not simpiy say are you an AIDS organization. MS. DIAZ: fn other words, integrating it into an ecxisting structure? MR. DALTON: Yes. MS. BYRNES: I am Maurcen Byrnes, Executive Director of the Full National Commission on AIDS, and I now adjourn this meeting. (Whereupon the meeting adjourned at 4:30 p.m.) COPLEY COURT REPORTING 10 Ll 12 13 14 15 16 17 18 19 20 21 22 23 24 CERTIFICATE COMMONWEALTH OF MASSACHUSETTS SUFFOLK, SS. I, LISA W. STARR, a Notary Puoiic in and for the Commonwealth of Massachusetts, do hereby certifys That the said proceeding was taken befoxe me ac a Notary Public at the said time ana place and was taken down in stenotype writing by me; That I am a Certified Shortnand Reporter for the Commonwealth of Massachusetts, that the said proceeding was tnereafter transcribed into computer-assisted transcription, ana tnat tne foregoing transcript constitutes a full, true, and correct report of the proceeding which then and there took place, transcribed to the best of my skill ana ability. IN WITNESS WHEREOF, ££ have hnexeunto set my hand and Notarial Seai this 20th day of February, 1990. et... 2 LISA W. STARR ” Notary Public My Commission Expiress May 13, 1994. COPLEY COURT REPORTING