THE TRANSCRIPT OF THE NATIONAL COMMISSION ON AIDS WORKING GROUP ON FEDERAL, STATE AND LOCAL RESPONSIBILITIES JANUARY 4, 1990 VOLUME I Held at the: Saint Paul Hotel 350 Market Street Saint Paul, Minnesota Reported By Linda L. Hildreth HILDRETH COURT REPORTING SERVICES 2827 North Asbury Saint Paul, Minnesota 55113 (612) 631-1926 10 11 12 13 14 15 16 17 18 19 20 21 22 23 a4 25 APPEARANCES: January 4, 1990 Diane Ahrens Ramsey County Commissioner Dr. James Allen Department of Health and Human Services Sister Mary Madonna Ashton. Minnesota Health Commissioner State Senator Linda Berglin National Conference of State James T. Bulger New York State AIDS Institute Maureen Byrnes Executive Director of the National Commission on AIDS Councilmember Brian Coyle National League of Cities Pat Frank Coordinator of the AIDS Resource Programs with the Institute of Health Policy Studies at the University of California in San Fransisco Mayor Donald Fraser U.S. Conference of Mayors Richard Johnson Staff of the U.S. Conference of Mayors A. Billy S. Jones National AIDS Network Larry Kessler Board Member National Commission on AIDS Ann Klinger National Association of Counties Charles Konigsberg, M.D., M.P.H. Board Member of the National Commission on AIDS et ete eee ea tree ee pe David Lurie Commissioner of Health of Minneapolis Councilmember Angel L. Ortiz Philadelphia City Council Councilmember Lori Palmer Dallas City Council Joan Piemme Policy Analyst for the National Commission on AIDS Jane Silver Senior Policy Analyst for the National Commission on AIDS James E. Smith National Association of People with AIDS Herb Stout North Carolina County Commissioner Timothy R. Wolfred, Psy.D San Fransisco Mayor's HIV Task Force 10 Li 12 14 15 16 17 18 19 20 al 22 23 25 INDEN Commigsioner Diane Ahrens, Introduction Dr. James Allen Ann Klinger Councilmember Brian Coyle Honorable Donald Fraser Senator Linda Berglin Councilman-at-large Angel Ortiz James Smith A. Billy S. Jones Councilmember Lori Palmer Commissioner Herb Stout Commissioner Sister Mary Madonna ashton James T. Bulger Timothy R. Wolfred, Psy.D. First Day of Working Group Concluded Reporter's Certificate Page VOLUME II January 5, 1990 Second Day Round Table Working Group Appearances Second Day of Working Group Concluded Reporter's Certificate Page Page 11 35 48 63 88 98 115 126 136 150 166 179 200 210 211 164 165 O 10 11 12 13 14 15 16 17 18 20 al 22 23 24 20 cA (Whereupon, the following proceedings rere adulv had:) MS. AHRENS: Good morning. My name is Diane Ahrens and I'll be chairing this meeting. This first meeting on the Working Group of the National Commission On AIDS is called to order. Our task over these next two days is to come to a consensus as to what the appropriate responses of federal, state, and local government ought to be in confronting the AIDS/HIV epidemic. Our congensus will be presented to the entire National Commission on AIDS for their deliberation and the commissions next meeting on January 25 in Los Angeles. To accomplish this task the commission chair, June Osborn, has appointed three members of the commission and I am pleased to introduce to you now one of my colleagues that will be with us todav, Dr. Charles kKonigsberg, who is the Commissioner of Health from the state of Kansas. Charles brings to this commission his broad experience in the field of public health having recently served as the District Health Program Director for Broward County, Fort Lauderdale, Florida. The second member of this working group is Larry kessler who is the Executive Director of the AIDS Action. He lives in Boston which is a community-based organization. Larry also serves on the Massachusetts Governor's Task Force on AIDS and the Boston Mavor's Task Force On AIDS and he is a national leader in developing a community response, particularly in the volunteer sector, in addressing the “yf i 13 14 15 16 18 19 20 2a 23 a4 25 epidemic. Larry's plane has landed, I understand, at the airport and he is on his way here so he should be here very shortly. I want to welcome our distinguished presenters who we Will hear from individually during this day, and of course, our quests and our visitors. I would also at this time like to introduce the commission's staff whe are here from Washington and when I call their name I hope they will waive their hand or stand. Maureen Byrnes is the Executive Director of the National Commission On AIDS; Jane Silver is Senior Policy Analyst, over in the corner there; and Joan Piemme who is also a Policy Analyst, and Joan, I believe, is in the rear of the room. Pat Frank who is here with us at the head table is the Coordinator of the AIDS Resource Programs with the Institute of Health Policy Studies at the University of California in San Francisco, and Pat is going to be our facilitator for tommorrow's meeting. I Know that any of the staff that are here will be available to answer any questions, either about the commission or about this meeting specifically. Laying a framework for our task I can think of no better resource than to refer briefly to the report of the commission which was issued last month to the President and to his congressional leadership on some of the testimony presented. In the commission's overview, the report stated that there is dangerous and perhaps an even growing complacency in our country toward an epidemic that many people would like to believe is over. Far from being over, the epidemic is reaching crisis proportions among young, the poor, women, and many minority communities; in fact, the 1990's will be much worse than the 1980's. The link between druq abuse and HIV infection must be acknowledged and addressed in international drug strategy. There is no national plan for helping an already faltering health care svstem deal with the impact of the HIV epidemic. The public health care system in this country is not working well and nowhere is that more evident than for people with AIDS. While AIDS is not the cause of the health care system's disarray, it may well be the crisis that will press a response for a national action to correct and share very serious short falls. In eXamining the scope of the problems, we need to be reminded that over the course of the next 4 vears in this country AIDS will likely claim an additional 200,000 lives. By 1$6S1, just 190 years after the first AIDS cases were reported, AIDS will far exceed all other causes of death for people between the ages of 25 and 144. In New York City alone, an estimated 100,000 intravenous drug users are HIV infected. The HIV epidemic is not just in New York City or in San Francisco as some people would like to believe. By 1991 it is expected that 80 percent of new AIDS cases will come from outside of New York City and San Francisco. In fact, as the numbers escalate there has been a dispreportionate impact of HIV on disenfranchised populations: qay to poor, racial minorities, romen, adolescents, and druq users. Populations having already less than optimal access to quality health care. The development of a national care and treatment strategy will require a rethinking of our past etforts. And what about the care for those who are. infected? In recent years we have seen considerable advances in the development of new HIV drugs but scientific breakthroughs mean little unless the health care svstem can incorporate them and make them accentable to people in need. According to a 1987 u.S. Hospital AIDS Survey almost one quarter of all AID's patients have no form of insurance, either public or private. For the medically disenfranchised there is no access to a system of care. For those who have no doctor, no clinic, no means of payment, access to health care services, they're most often through the emergency room door of one of the few hospitals in the community that will treat AIDS patients. Those who are covered by Medicaid tace obstacles as well. One obstacle is the wide variation among states in terms of Medicaid eligibility and the scope of benefits. There is no requirements that Medicaia make even life prolonging Qruas such as AZT available. Another obstacle to needed care for persons with HIV to even qualify for Medicaid is a low reimbursement rate. For example. a new patient entering a office visit in New York City is compensated by Blue Cross at $78 dollars, by Medicare at $80 dollars, and by Medicaid at $7 dollars; yet there is still no national strategy for the care and treatment of HIV infected people. ‘OD 10 Li 12 16 17 18 19 2 Research has brought us now to the point that we urgently need to have in place such a strateqy and this must he a national strateqy for a number of reasons: firstly, under even the most conservative estimates, the number of infected individuals is overwhelming. The CDC currently estimates that between one million and one million one hundred thousand are presently HIV infected; secondly, the recent federal recommendation outlining prophylaxes released with no additional resources or recommendations for altering the existing piloting programs. and the health care system is already near collapse in many parts of this country. And fourthiy, the disproportionate impact of HIV on disenfranchised populations and the total inability from a physical or a resource perspective for the high incident states to pay for the levels of care and treatment needed for HIV infected populations. We as a nation are totally unprepared to deal with the impact of these recent developments and until we make HIV care and treatment a national, state, and local priority, HIV will continue to kill off our population as effectively as any war, past, present or future. And that brings us to who is responsible, rho is responsible for acting? In carrying out its mandate, the National Commission On AIDS will attempt to delineate clearly the roles and responsibilities of the various levels of government and the private sector in responding to and managina g 10 1i 12 13 14 16 17 18 1S 20 21 19 the epidemic. Today there is no national policy or plan. Without the definition of roles each level of government points its finger at another level and says, "It's their job." Clearly, managing the HIV epidemic is a responsibility which must be shared by all of us. Without federal leadership the states have assumed various degrees of responsibility for planning and coordination and the provision of care, and many local governments have played key roles in determining how patient services should be provided, and the private sector AIDS organizations have also been a very important part in managing the epidemic today. We must, the commission was told, move swiftly to bring the missing players to the table and this includes a greater presence of our federal, state and local government in determining leadership, financing, and services. And so responding to the challenge to bring the missing players to the table, the National Commission On AIDS has appointed this working group and given us the task of translating the facts into action that we may all be held accountable for the national etrateqy that is long overdue. And that, my friends, brings us to this meeting. We have set forth some goals for today's session. The first is to learn who is doing what? The second is to learn «what isn't working, and the third is to learn what should be the role of the various levels of government’ as seen by our presenters. And to help us in this task this morning we are pleased to welcome representatives from several national orqanizations that represent various levels of qovernment. The federal qovernment fhrough the Department of Health and Human Services, The National Association of Counties, The U.S. Conference of Mayors, the National League of Cities, and The National Conference of State Legislatures. In the afternoon, we will here from invited guests from governmental levels ag well as those in community and volunteer sectors, and our afternoon presenters will remain with us tomorrow to join with the commission members in a round-table discussion which will be facilitated by Pat Frank to drive us towards consensus on the roles of responsibility at the various levels. And now I'm delighted to welcome to the podium Dr. James Allen who is the Director of the AIDS Program Office of the Department of Health and Human Services. And I would like to say to Jim that we feel like we are really welcoming a friend. Jim has been at all of our National AIDS Commission meetings whether or not the Secretary, Louis Sullivan, of Health and Human Services was there. He has sat with us through all of our Geliberations and he provides wonderful advice and counsel, both officially and on the side to the work of the commission. Sgo0 welcome to Saint Paul and to this working group, Jim. DR. ALLEN: Thank you, good morning. I welcome the opportunity on behalf of Dr. Louis W. Sullivan, OQ 10 ii 12 13 14 16 17 18 12 secretary of the Department of Health and Human Services and a member, himself, of the National Commission On AIDS, to appear before this working group of commissioners to discuss the federal role in response to the epidemic HIV infection and AIDS. I apologize that I do not have prepared copies of my testimony to distribute to vou at this time. I will have copies available early next week. Since I have been asked to speak for no more than 15 minutes I will try to provide you with an overview that Will serve as a framework for questions and discussion. My discussion will start with a historical perspective, tocus on the public health service response, and other proagrams, activities and responsibilities in the Department of Health and Human Services, and then conclude with a brief discussion of the response otf other federal government departments and agencies. First the historical perspective. The first cases of the iliness now Known as AIDS were recognized by clinicians in early 1981 and were reported through the local health department in Los Angeles to the Center of Disease Control. Epidemiologists at Cb€ responded quickly forming an ad hoc task force that worked elaborately with state and local health officials and kith clinicians around the country. The objectives were to define the extent of the problem through case identification reporting, to understand basic clinical and epidemiclogic aspects of the proplem, and to identify epidemiologic patients as rapidily as possible. And obviously at that point we didn't know whether or not it was infectious or toxic or rKrhatever. Physicians and selentists at NIH also rapidly became invelved treating patients referred to the clinical center, investigating epidemiologic and pathophysiologic aspects of the problem and trying to define epidemiology. Within 12 to 18 months after reporting of the first cases to CDC, the public health service had defined the basic etiology of the problem. It conventrated its search for etiology on isolation of the virus for a virus-like agent and it began to issue prevention recommendations to try to prevent further spread of the problem. By late 1982 CDC had given the New York City Department of Health monies through a cooperative agreement to establish an active surveillance system, and in 1983 additional state and Local health departments were provided with monies for surveillance programs. Also in 1983 CDC Kvorked collaboratively with the council of state and territorial epidemiologists to make AIDS a reportable condition and to establish a uniform and national surveillance system. Articles describing current information about AIDS were being published reqularly in the Morbidity and Mortality Weekly Report which is CDC's weekly oerqan to the public health community and a toll free National AIDS Hot Line was established. Intensive efforts were algo made in 1983 and the following years by the Food and Drug Administration and CDC to improve the safety of the nation's hlood supply. In 1984 HIV, which of course then was being 19 Ji 12 13 14 15 16 17 18 19 14 called HVI3 or LAV, was identified as the cause of AIDS, and public health service scientists, especially those that the Food and Drug Administration and VIH, worked with private industry and academes to develop a refined analyzed test that could be marketed commercially for the protection of the blood supply, and to diagnose persons who were infected for education and prevention efforts. CDC worked elaborately with the Association of State and Territorial Public Health Laboratory directives to establish clinical laboratory training prograns, to teach public health and other laboratories how to do HIV antibody testing and Western Blot confirmation, how to train others, and how to establish quality control programs to assure the validity of the test results. CDC also rvorked elaborately with state and local health departments to educate a candre of trainers to assure there would be people nation wide to provide counseling in prevention and education for people who wanted to be tested. Federal monies were also awarded quickly to establish anonymous testing cites. This tunding is still continuing. By 1986 federal monies were being awarded to every state as well as to a number of local health departments for prevention activities. CBC has provided public health advisors on special assiqnment to a number of the most heavily impacted areas to assist with program development and administration. Simultaneously with these activities NIH and the Alcohol Drug Abuse and Mental Health Administration have developed strong, spec nee see pete en Oo 10 11 12 13 14 16 17 18 20 al 22 23 24 25 15 broad-based intramural and extramural research programs «hich have provided a wealth of new basic applied science in epidemiologic results and information. With that background let me now provide you with a summary of the public health service areas of responsibility and the types of activities that we followed against the HIV and the AIDS epidemics. Basic science research has a clear responsibility in the public health service primarily through NIH and ADIBAUM (ph.). This includes both intramural and extramural grant programs and studies. Specific areas of focus with biomedical research include studies of HIV, the AIDS virus, and the HIV genome, immunology including immunopathogenesis and the immune response to HIV infection and development vith animal models of infection and disease. Other areas of basic science research include neuroscience and neuropsychiatric aspects of HIV infection. Behavior research, to better understand mechanisms of behavior and behavior change and the development of diaaqnostic methods and free acents is also important. Two other areas that have received maior emphasis during the last several years are the development of new drugs and therapies and then the clinical trials for these therapeutic agents to try to bring them rapidly to market. There is also a major effort for the development of vaccines although that has been less productive to date but does show some promise. The seateedaient tne mn es i —eeeeeeeeeeee eee 10 11 12 13 14 16 17 18 19 20 21 22 23 ad 25 16 druq development program includes anti-viral agents, anti-microbial adents of a wide variety to trv to modify or treat the opportunistic infections that affect people with AIDS and immunomodulating and antineoplasty agents since cancer also is clearly a siqnificant problem with people with HIV infection. NIH has made extensive efforts to develop a large, well coordinated AIDS clinic of trial groups to assure adequate numbers and variety of patients being enrolled in the clinical trials. The formal adult and pediatric AIDS clinical trial groups are now being supplemented with the recently developed community-based program for clinical research on AIDS. The second major area of the oublic health service responsibility is risk assessment. Although disease surveillance and reporting programs are state and local responsibilities, the United States has the best national surveillance program because of the high degree of cooperation between the federal government and the state and local health departments. CDC has provided monies to all of the state health departments for years to facilitate AIDS case reporting and has assisted in the development of the uniform definitions and uniform reporting forms te facilitate this. In addition, tre have established seroprevalance studies including the go-called Family of Surveys. This is aqain being carried out cooperatively through state and local health departments. The federal role is to provide dollars, to provide 10 11 12 13 14 15 16 17 18 19 20 21 22 23 ad 25 17 technical assistance and to assist in the development of uniform epidemiology and reporting system. We are collaborating with selected states and health departments in terms of establishing HIV reporting systems. This is really what I would term exploratory cooperation at the present time and there has not been any national decision through -- or with the State Territorial Health officers to establish a national program for HIV reporting. Another area in risk assessment is, epidemiologic studies. The federal government has played a maior role although ve don't have unique expertise, but we have been prominent in facilitating many of the major studies. We have done some of these directly, we have done many of them collaboratively through and with the state and local health departments, sometimes providing technical assistance and expertise, and in every instance providina dollars to facilitate these epidemiologic studies providing much of the basis of knowledge of the epidemic. The third major area ot federal government responsibility is for information, education and prevention. We have targeted these to four basic population groups, if you will. One is to the population of high risk persons reqardless of what those risk factors mav be. The second area is to the general population with subcateqories for selected minority populations or racial and ethnic populations for whom the special messages on 6 10 11 12 13 14 15 16 17 18 19 20 21 18 need to be targeted. The third group for information education programs hag heen schools and colleges, and a fourth group has been health care workers to assist them in evaluating accurately what their risks are and to take the appropriate methods of prevention so that they are not afraid to provide care for HIV infected people. The mechanism for much of this information, education and prevention program has aqain been through the provisions of monies, through cooperative agreements or other means of giving monies to state and local health departments. In other groups, through the provision of technical assistance, and through training programs. We have given monies directly to state and local health departments to then use directly for proqram development or to pass on to community-based orqanizations. We have also been given congressional anthority to provide some monies directly to community-based organizations. We've qiven money to the Conference of Mayors which group has worked with community-based organizations and others, and ve have given money, particularly for some of our school-based educational programs, to national and regional organizations of a variety of types. The Center for Disease Control, again with people from state and local health departments, has taken a major role in the direct development of guidelines and the publications of those guidelines. We have developed a variety of materials and 10 11 12 13 14 15 16 17 18 19 ag 21 23 24 25 19 brochures and phamphlets which are available for distribution. Through our National Education Program we have developed a variety of public service announcements, advertising, we have developed a national mail-out brochure and sent that out to every household in the United States. Recall and a hot line are operated by the CDC and provide a national resource in these areas. In addition, there are hot lines that have been established for the provision of information on treatment and therapy trials. The final area in this broad category is the enhancement of prevention capacity. We're working with an instate health department in terms of training individuals, providing laboratory courses and quality assurance programs in laboratories to facilitate the capacity enhancement at the state and local level. The fourth major area of federal responsibility through the Public Health Service is product evaluation, research, and monitoring. This is largely carried out by the Food and Drug Administration. There are five areas that could be looked at quickly. Gne is for therapeutic agents and this includes the evaluation of licenser, production, monitoring and inspections for -- of companies and of the therapeutic agents that thev are producing. The second area is similar types of activities in vaccine production. The third area is diagnostic free agents and test tips which includes the evaluation licenser and again 10 11 12 13 14 15 16 17 18 19 20 al 23 24 25 20 production monitoring and inspection of the production facilities. The fourth area igs blood and bloced products and includes the licenser and inspection of blood and plasma and collection facilities, processing tacilities, and transfusion services. And the final area is that of medical devices to assure their safety and efficacy that includes setting standards and inspections of devices such as condoms, medical and surgical gloves and so on. The fifth major area of responsibility of the Public Health Service is in the provision of -- for limited populations, clinical health services, research and delivery. We have responsibility for services through a variety of community health centers, IV drug abuse treatment centers, migrant labor health centers, selected pediatric populations and so on. We have provided a variety of grant monies for health service demonstration projects and we have limited resources for the construction and innovation of facilities including acute care and immediate care and chronic care facilities. We are expanding our research programs into these areas to assess better the access to utilization, the quality of and financing of our health care services. This is an area that is relatively new in terms of our priorities for work. The sixth area, the Public Health Service, has responsibility for international research and assistance. We provide a variety of technical assistance to countries of the DO 10 11 12 13 14 15 16 17 18 1S 20 21 22 23 25 21 world primarily throuqdh the World Health Orqanization and its reqional organizations such as the Pan-American Health Orqanization. We have research projects developed in a number of countries through bilateral or multilateral cooperative agreements and we also collaborate closely with the World Health Organization of Local Program On AIDS for education programs, for policy development, and in similar areas of technical assistance. Let me at this point move on to describe very briefly the responsibilities of other proqrams in the Department of Health and Human Services. The Health Care Financing Administration, I believe vou are all fairly familiar with, has the primary responsibility for financing of selected programs through Medicaid and Medicare. The Medicaid programs in fiscal year 1989 provided a federal component for AIDS alone for approximately $490 million dollars; in fiscal year 1990 Ke estimate that this will increase to about $670 million dollars. The Social Security Supplemental Income Programs and Disability Income Programs have also been important. In fiscal year 1989 they have provided $199 million dollars of services, and fiscal year 1990 approximately $225 million dollars are estimated. Under Secretary Constance Warner has been asked by Dr. Sullivan to establish a task force to review the reimbursement and financing mechanisms for medical care, this is not AIDS specifically, but much more broad based. This task force is 10 11 12 13 14 15 16 17 18 19 20 21 22 23 a4 25 22 early in its deliberations and I don't have specific information as to how quickly we expect to have a report out. Dr. Sullivan certainly is to be concerned about this area and is taking action through the establishment of this task force to review this. Other federal government departments and aqencies also have a variety of programs and I'm not going to try to describe those in any detail except to indicate that the Veterans Administration, for example, has devoted in fiscal vear 1989 approximately $142 million dollars and is estimated to have a buddqet of about $179 million dollars in fiscal year 1990 for AIDS related activities. It certainly will include some prevention activities although most of it goes to direct medical care. As an example of the extent of involvement of the Veterans Administration in the AIDS epidemic, approximately 6 percent of the AIDS cases reported to the Center for Disease Control have been recorded through the Veterans Administration system. The Department of Defense has a budget -- had a budget in fiscal year 1989 of about $86 million dollars and in fiscal year 1990 an estimated $107 million dollars for its HIV related programs, and it certainly would include antibody testing, prevention, education, medical care, and research in selected areas. The State Department through the Agency for International Development has a budget of about $40 million dollars, and $41 million dollars this year for technical Oo 10 li 12 13 14 15 16 17 18 19 20 al 22 23 25 23 assistance internationally. And health departments in the federal government have a relatively small budget estimated for this fiscal year to be approximately $8 million dollars. Let me conclude my comments at this point. It's been a very brief and quick sketch with most of the emphasis certainly on related-health. I would be pleased to answer any questions. MS. AHRENS: I Just wanted to welcome Larry kKessler to the table and say we're glad you got here safe and sound, Larry. You've already been introduced in the opening remarks. DR. KONIGSBERG: Dr. Allen, we certainly appreciate your being with us this morning. I want to pick up on some of the points that vou made. One of the recent articles that I read was by Donald Francis from the CDC wrote, I think very well, about the system of early intervention of HIV that is being used in parts of California. And what particularly struck me about that article was how the medical care was tied into the primary and secondary prevention and I was Kind of wondering if you would comment on that and how you gee the federal support going in -- or related to that. And I guess kind of part of what I'm driving at is, if you'd put a little historical perspective and go back to tuberculosis when that was also a dreaded disease, it was really devastating to the population in our country. Special systems of care were set up and I quess I see some parallel here. If you could kind of — TT 10 11 le 13 14 16 17 18 19 ag 21 22 23 ad 25 24 comment on that and whether or not these kinds of things are being considered in leadership in the federal level? DR. ALLEN: Very important question and we certainly agree that if we're really going to be able to attack this problem successfully in terms of secondary prevention, if yon will, people who are already infected, it's very essential to have them diagnosed early, to bring them into the medical care system, and certainly obviously also to take preventive steps so they do not transmit to others. I think you're fecusing your question more on the provision of care and the prevention of their complicating, opportunistic infections through appropriate medical management. We couldn't agree more that this is very important, and certainly given the very large basic science research budget that is going into the development of therapies and clinical trials, we are emphasizing one aspect of that component because the therapies have to be there in order to provide successful secondary prevention efforts. The role that has been played, however, in directly providing monies for medical care services and paying for these is not one that has been given to the Public Health Service direct, and we certainly have had discussions with a variety of people within the department, within the administration, with congress, and we have not been given the directive within the Public Health Service to move ahead aggressively in this area, and certainly Congress is not 10 11 12 13 14 15 16 17 18 19 20 21 22 25 independently taking that responsibility by giving us either authorization or appropriations for such activities. We certainly have limited responsibility in that area, primarily through the health resources and services administration, HRSA, and we clearly have carried out our responsibilities in terms of the specific programs for clinical community health centers for pediatric demonstration projects and that sort of thing. We have administered the money as promptly as possible and Congress has appropriated it for special reimbursements for therapies that have been proved effective. Primarily this has been for Azidothymidine, AZT. The primary agency that is responsible within the health and human services for financing has been the Health Care Financing Administration. They have certainly been aware of the issue, have responded to it as appropriate. As we all Know the monies are not satisfactorily sufficient to provide full medical care for all people nor do all people qualify for the programs that have been authorized for the health care financing administration. DR. KONIGSBERG: If I may follow up with more of a comment than a question. I think one of the things that I hope this commission will recommend, I'm not sure what form this would take, would be that somehow the federal response to AIDS, but particularly looking at the medical care aspect, will be pulled together in some kind of an overall strategy because what I think we see so often ~-- and I know at the state level this Oo 10 1] 12 13 14 15 16 17 18 19 20 ai 22 23 pO om 26 leads to fragmentation at the state level, is that the financing which is the National AIDS Program Office is separate from say HRSA and this and that and the other thing is that somehow we've got to put all this into some kind of a grant strategy that will leave plenty of room for a state and local flexibility but it gays, “Hey, this is. an approach which is cost effective and which will work and which will tie prevention into the treatment." And I think that's probably one of the things. I don't Know how some of the others feel. That leads to some frustration because I Know even at the state level we have vet to, at least in my state, put together a grant strategy, and I think we kind of reflect that at the federal level. I wanted to ask one other question, if I may. In talking to state laboratory directors, they're asking a lot of questions about what their roles will be in this rapidly changing field, particularly with respect to the use of immunologic markers, CD4 cells and this kind of thing. What's vour feeling about that as an appropriate role for labs and how the federal government might support that, is that something that the state should be looking at through their public health laboratories? DR. ALLEN: Again a very good question. I had personally hoped that we would be able to come up with markers for disease progression or status of the individual. That would be much simpler to do than to do CDd counts which are very time consuming, tedious-type tests that require the 10 11 12 13 14 15 16 17 18 20 21 22 23 od 290 27 specimen to be fresh and to be handled very carefully, and there is incredible ranqe of error that can creep into the test results. I hoped that we would have something developed throuqh our research program that would be much easier to use than the CD4 cell count. It hasn't been there and at this point the cCD4 cell count seems to be the best marker that we've got. It is a test that must be therefore widely available and readily used. We need to educate physicians in terms of the interpretation of it and we certainly need to work with laboratories to help them develop the capacity to do the tests accurately and reliably. And given the system of care that we have in the United States, certainly the State Health Department laboratories are qoing to play a major role in the training and the monitoring and the quality assurance of that. CDC has worked with the association's State and Territory Public Health Laboratory directors in development of programs. Unfortunately as always is the case, you never can anticipate and develop programs and get the budget monies for it as rapidly as is necessary. Steps are being taken in this area. This is one of the areas that I mentioned that was included, although I didn't mention it specifically when I talked about prevention and capacity enhancement. In my view, this is an extremely important area, and certainly one that we are pulling together the 1992 budget to present, and we're going to look at very carefully and I know CDC is working in this area also. a ee med me pe 10 11 12 13 14 15 16 17 18 19 20 21 22 23 ad 25 28 MS. AHRENS: Jim, I want to follow up on a question I think that Charles was touching on and this is a time to dream. Some of us at state and local levels see the money coming through to us in certain kinds of categorical programs which is very nice. However, does not always lead to meet the needs as we see them at the state and local level and I'm just wondering if you could sit back and dream with us for just a minute and share what you think a responsible best-integrated infection and care and support approach would be at the federal level? DR. ALLEN: Is this on or off the record? MS. AHRENS: Well, I don't Know, does the microphone turn off? DR. ALLEN: Ideally, we would not have categorical programs where we're focusing on a single disease to the exclusion of everything else. Ideally, we would have a medical and health care delivery system that was well integrated where at every level we had education, prevention, early diagnosis, treatment, and medical care services that were uniformly coordinated and readily available to anyone who needed it. That's not been the way that the system in the United States has developed and I think whatever we do at this point has to work within the system and change the entire system. Not just for AIDS and HIV infection, although we all recognize that 10 11 12 13 14 15 16 17 18 19 20 al 2a 23 a4 25 ag that is the disease problem, particularly in selected cities and local areas that have been very heavily impacted, that's the disease that is bringing the system to a halt at the present time. This, as I indicated, has not been an area that has been primarily in the past the responsibility of the Public Health Service. We are not at the present time geared up nor do we have the mandate to do that. And I think a very important role of the commission is going to be to work with the federal government, not only Health and Human Services, but the entire federal government to help define what the response ought to be. I think at the present time that much of the responsibility for AIDS has been seen to be the prevue of the Public Health Service and not widely of other qroups and agencies. And I think that's been fine in terms of the response that we have provided today and that is part of why I gave the historical perspective that I did, because I think as we had the very early response from the Public Health Service, that was fine, but we failed to then broaden the response to involve all of the sectors of the federal government that we should have. And we now find that we're in the health care crises. That you can say, yes, it's been predicted, but it's been predicted really for a matter of a few years. And I'm sure you're aware of government bureaucracies and how difficult it is to change things and to develop totally nex programs, how londq it it takes to qet a piece of legislation crafted and through the system so often. So I think that we do need to take a very hard look at it. We have to do that, however, from the perspective of where we're starting now and not just from what would we do if we were starting all over aqain because we are starting all over again. We're in the midst of this and we have to do what we can now to assure that we can meet the needs as quickly as possible. I agree with you, there is a need for much greater coordination. Mv job in the Public Health Services is to try to coordinate the Public Health Service response. And believe ine, with all of the major agencies that we have got, the variety of the programs, the fact that we are working with a budget of almost $1.6 billion dollars this year, I can't keep track of everything that is happening within the Public Health Service, much less in the areas of financing and overall delivery of health care services. We have to broaden the response and we have to look at how we can do this most effectively. MR. KESSLER: keeping with the theme of dreaming a little, and here we are in a new decade. If you had the opportunity, what would you in terms of the prevention and education, models, experiments, successes, and failures reinitiate or reform in terms of the 1990's? What do you see and think are the most sucessful and what are the things that you think have failed on a scale --. You know, obviously there 31 are things that have worked in some parts of the country and not in others, but we obviouslv need to continue the prevention and education efforts while we're working on the treatments of the vaccines. And we seem to be stuck, we're stuck in terms of national dependency now, an '80's issue, a new decade, I think no one wants to pay attention. How are we going to take those efforts or recharge them or scuddle them for the '90'3s? DR. ALLEN: We don't have programs that have clearly failed nor do we have programs for which we have got clear evidence that we have had overwhelming success and that is part of our problem. We have developed a lot of programs, some of them have been developed at the federal level. More often it's federal money that's qone to the local areas, to the conmunity-based organizations who then have developed a wide variety of programs. Unfortunately, the evaluation effort has not Kept face with the development of the programs and evaluation, and as you well know, is extremely difficult to do, to really know what you are doing to be most effective. Let me just throw out as an example, I was just before the session talking with Dr. Mike Osterhoff, who is the state epidemiologist here, and we were comparing notes and both of us agreed that much of the so-called success that we think we've seen in some of our prevention efforts may simply be the fact that the people who were at highest risk became infected or were involved very early in the epidemic. Now what seems to be a 10 ad 12 13 a 15 16 17 ‘18 ag '20 21 22 23 25 a S! ] drop-off in the rate of ner infection Ehich ve superficially attributed to effective prevention programs may simply be that the populations that are left were at lower risk anyhow and they aren't becoming infected now because their behaviors don't place them at high risk. That isn't necessarily a successful prevention program. It's the fact that these people had behavior patterns and life styles throughout that never did place them at high risk. We haven't been able to sort out all these things. My real concern as we move into the '9$0s in terms of where we are with this epidemic, and the prevention of it, is several fold. One ig that we have aduit populations that continue to be at risk and somehow we need to really educate then and effectively get the message across that prevention of infection is the most important thing that they can ever do to keep themselves healthy. That I don't care whether we get a vaccine, whether we get a real cure for this disease or effective treatment, it's never going to be as good as prevention, not becoming infected at any point in your life. The second is that we have got to recognize that we can't ever relax on our education efforts until -- or unless we were somehow miraculously able to irridicate the virus. We have to have effective prevention efforts for our young people and this must be tied in with effective drua abugse prevention prodrams, it must be tied in somehow with effective sexual education 10 11 12 13 14 16 17 18 19 20 21 22 23 24 25 33 programs, and we all know how difficult this is because that then gets into areas where people make independent moral judqments. To my mind, however, if we fail to look at this as a very broad based population -- let me strike the word poplulation, but cultural norm, that we are destined to failure. If we continue, for example, to have television programs and movies where the standard seems to be sex between people in a variety of different circumstances, nonmonogamous sexual relationships, and there is never once a mention of the potential for STD's, sexually transmitted diseases, there's potential for pregnancy, there's potential for problems of any sort. If the heros in these movies and television programs don't and can't say or use the condom word, I think that our education efforts are destined to failure. We somehow have got to set norms that are different than what are there now and it goes back to the fact that to really have effective education, you can't stop with just giving knowledge. The Knowledge has got to be there and it's got to be clearly understood. The second component has got to be effective skills. People have got to be able to use the knowledge and Know how to put the Knowledge into effect. The third is the people then have to be motivated to use it personally; it is important for me to follow this behavior, to make this lifestyle choice and I'm motivated to do it and I oO 10 11 12 13 14 15 16 17 18 19 20 21 22 23 ad 25 34 will therefore do it. and then the fourth are the supporting relationships, peer relationships, peer groups, cultural norms involved that support and confirm those lifestyle choices. And given that we have a free and open society in the United States and that that is one of the great strengths of this country, we somehow have to be able to get across effectively the education messages and make this very important for every individual person if we're going to be effective. I'm not sure that we Know today how to do those programs. Part of the research program that is being carried out by the Public Health Service is looking at behavioral research, how do we get people to change their behavior and to follow that effectivelv. We're very early in that research program, we don't have a lot of answers yet, but it's a topic that needs to be fully discussed at all levels and that we need to give a lot of priorty to. MS. AHRENS: Jim, I want to thank you very much. We have a lot more questions for you but you're going to be here for a while. DR. ALLEN: Yes. MS. AHRENS: This afternoon and with us tomorrow so we'll det to some of those. At this time I appreciate your presentation and your very open and candid answers to our questions. 10 11 12 13 14 15 16 17 18 19 20 21 22 24 25 35 At this time I want to welcome Commissioner Ann Klinger to the podium. Commissioner Klinger is the President of the National Association of Counties, she has been a leader in the National Association of Counties and certainly from her own state of California for over ten years. It's been a real pleasure for me to come to know Ann and I want to say to Ann that as a fellow county commissioner I'm just very proud of the work that vou're doing with the National Association of Counties. MS. KLINGER: Thank you, Commissioner Ahrens, and members of the National Commission on AIDS for inviting me to be here this morning to talk to you about the role of the county governments in addressing HIV infection and AIDS. You have my written testimony and in the interest of time I'm going to abbreviate my remarks as I describe the role of counties in delivering health care and the work of our task force on HIV infection and AIDS. As the provider of last resort, counties in over 30 states are legally liable for indiqent health care. County revenues set up hospital and health care in 1987 that totalled almost $15 billion dollars. Counties own and operate about 4,000 public health facilities, including hospitals and clinics, nursing homes, and health departments. As employers, counties provide health insurance to about 2 million employees nationwide. Special problems of drug abuse, AIDS, lack of 10 11 12 13 14 15 16 17 18 20 21 22 23 24 25 36 prenatal care, and the uninsured are also budqetary problems for counties. Federal dollars to state and local qovernments have decreased in real dollar terms by 47 percent since 1980. This revenue reality for counties has forced us to pick up many programs with local tax dollars. In just 6 years, from 1981 to 1987, counties were forced to raise their own revenues by 60 percent and a financial abyss now faces counties. Counties cannot absorp the exploding costs of indigent health care of Which AIDS is a part. We have watched this epidemic grow and there is no end in sight. Counties can't bear this burden alone and we need financial assistance. While we don't have the financial resources, counties do need to be able to take, and are willing to give, the time and attention this issue needs. We're prepared to collaborate in any way we can to the federal and state qovernment. As therapies prolong life and costs escalate the question before us is, who will be responsible for seeing that all persons with AIDS have access to appropriate services? This question about who pays for that care must be addressed. There is much that counties can and are doing about the AIDS epidemic. Two years ago the National Association of Counties formed an AIDS Task Force to assure that counties were responsive to this crisis. We have copies of this publication here today for you and maybe some of you worked on that and we greatly appreciate all the time and effort that you gave to the National i, Se Be cen eit eat ee pees pe Oo 19 11 12 13 14 15 16 17 18 20 21 22 23 a4 25 37 Association of Counties in making that document a reality. The task force talked with experts, those who were on the front line dealing daily with AIDS patients. The report included policy goals which has become a part of NACo's permanent American County platform for health, and these goals are first, to end the AIDS epidemic through education, prevention and research toward a cure; second, to assure access to care for all persons with HIV infection, including a range of treatment services: third, to protect the human rights of all persons. This qoal was considered extremely important, both for persons with AIDS and for those who do not have the disease; and fourth, to assure adequate funding for the full continuum of AIDS prevention and treatment services. And the word "adequate" was really considered to be the key. The task force recognized the need to fund necessary services while not jeopardizing other needed health care, and to really work with our severely constrained resources. In keeping with these goals, the task force urged county officials to assume the responsibility of providing community leadership, futher, to adopt HIV and AIDS policies and to make recommendations to the appropriate federal, state, and local roles in responding to the disease. The task force also developed a “peer education" program that occurs at our National Conferences. The task force told their county official colleagues, "Counties have an urgent task. AIDS is deadly. No miracle cures are in sight. AIDS knows no aqe, race, or sexual PE 10 11 12 13 14 15 16 17 18 19 20 21 22 23 a4 25 38 barriers." County officials must inform themselves and educate constituents about AIDS in order to stop its devastating march through all our communities. Basically, the county role.is to exhibit community leadership and to develop a local plan in cooperation with diverse community groups. County officials really can be models in discouraging ignorance and in promoting the use of accurate, sensitive information. County health department professionals will be keys in educating its community and in developing a workplace policy at county offices to address the needs of workers with HIV and those who work with persons With HIV infection. Important county roles are first to train emergency service personnel, hospital personnel and correctional facility staff on how to carry out their duties with minimum risk. Second, educational programs in all schools on preventing sexually transmitted diseases, including HIV infection, and the use of the print and electronic media. A fourth is expanding and strengthening non-hospital health care services, and if we move ahead with Diane's earlier suggestion of being able to use in the very best way so we get the best buys for our buck. I think that's very important, and we really need to continue to emphasize the risk of HIV and substance abuse. A strong non-discrimination policy should be part of all of our county personnel quidelines. We're committed to assuring 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 39 confidentiality and voluntary testing. The information should be provided to county emplovees and employees should be covered for treatment of AIDS or HIV related conditions. Counties recognize that there are important roles for federal and state officials as well. We urge the federal government to improve the testing and approval process for new druas. Federal programs including SSI, Medicaid and Medicare need to be coordinated to meet the needs presented by AIDS. We support leqislation to extend federal anti-discrimination protection in the areas of housing, emplovment, and insurance to people who are HIV positive. States can provide policy quidance and also leadership for all the victims. Counties need to develop policies for jails and prisons and we need to recoaqnize concerns and find alternatives in sentencing and rehabilitating individuals who are HIV positive. The National Commission's December 5, 1989, letter and report to President Bush was very striking. Your call to action needs to be heeded. The lack of a national plan for helping our nation's health care systems, the growing link between drug abuse and HIV infection and the dispersion of the epidemic outside of New York City and San Francisco are all cause for tremendous concern. We recognize the overlap with chemical dependency and many counties are working on that issue and trying to see if there is treatment on demand by individuals who are addicted to 10 11 12 13 14 15 16 17 18 19 20 21 22 23 a4 25 40 druas. There are simply not enough clinics in the country to really accomplish that at this point. It's my understanding that a majority of New York's new AIDS cases are drug related and some areas historically have really had a disproportionate share. At one point it was estimated that 25 percent of all AIDS cases were in California. Now, unless you think that those are all in San Francisco, and Pat can certainly -- and others in San Francisco have shown us some of the best ways to deal with the problem. But lest you think they're all there, let me tell you, I come from a very rural county in the center part of the state and our population is 171,000 and we have already had 17 deaths from AIDS and we carry a cage load of at least 25. We have had our first babies who have died of AIDS and the problem is really throughout the country, not only in the large metropolitan areas. One case can devastate a county budget in a rural area. When you consider that we have already had 17 deaths, picture what would happen in a county with a population of only 10,000 people but yet with an AIDS population. That is happening in California and some of those counties really do not know fow they're going to cope. In many areas of the country, there are cases as large in number as San Francisco had a few years ago, so we realize that this is not going to go away. We must stop the attitude if we don't look at it and sweep it under the rug it will go away; it will not. The commission's observation that Medicaid will not pay 10 lil 12 13. 14 15 16 17 18 19 20 21 22 23 24 25 41 for the health care needs for many persons with AIDS is riqht on target. Counties typically provide the care, we pick up the tab for the indiqent. For those 25 percent of AIDS patients without any insurance as reported by the 1987 U.S. Hospital AIDS Survey, it is often a county government, through its own tax base that pays for the care. In summary, the counties role in addressing the AIDS epidemic is one as a mobilizer and a planner. Counties can mobilize their communities to address the issues of education, prevention and treatment. Many have excellent plans already in place and are implementing those plans. The real problem we see is the financial one. Counties cannot continue to absorb the exploding costs of indigent health care of which AIDS is a part. I'm saying that a second time because it ig a revenue reality that we all need to face. The letter and report to the President called for bringing the "Missing players to the table...including a greater presence of...local governments in terms of leadership, financing and service delivery," and certainly that we are committed to do. We realize that while we Nay not have the financial resources, we have a lot of skill and commitment that will be needed as we deal with this issue in our home community. As you know, Commissioner Ahrens, through your outstanding work with NACo, we're committed to ensuring that we are at the table. We pledge our support to assist the National 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 42 Commission to frame the national strategy. NACO recognizes the serious crisis that exists with regards to the provision and treatment of AIDS for patients suffering from AIDS. Our county public health facilities will continue to grapple with the financial as well as the human realities of this tragic disease on a constant basis. Counties will continue to face the challenae of limited resource dollars and growing needs. I appreciate this opportunity to testify and will be happy to answer any questions that you may have. MS. AHRENS: Thank you very much, Ms. Klinger. DR. KONIGSBERG: Commissioner Klinger, I appreciate your coming forward today. I have a couple of questions. One of the things I would like to ask you has to do with the local public health department structures throughout the country. There's been, I think, a pretty wide variation in the response there. How do you view, since you have had some experience -- a lot of experience working through NACo, to work With various counties? How would you evaluate our local public health system across the board throughout the states in terms of responding to the AIDS epidemic, and then perhaps comment on What this commission could recommend in that regard to try to improve the situation if there are some problems out there? MS. KLINGER: I think overall our public health officials have done an outstanding job. We have 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 43 experience certainly with sexually transmitted diseases over many, many years. Our health departments are geared to treat individuals in a confidential manner, to be sure they feel they can come in for testing and for treatment, go in having an environment in which that can occur. I think that we do need to give additional attention to AIDS. There are several topics that counties deal with that we sometimes think if we don't really acknowledge the presence that they'll go away. I mean, mental illness historically for many years has been one, syphilis and gonorrhea and other sexually transmitted diseases is something that we don't usually talk about, and it's amazing you can actually hear the word condom now on television and actually say it in meetinas of this kind and in conversation and it's considered to be an okay thing to do. I mean, attitudes have changed and county health departments are changing along with that. A lot of the change in communities about what is okay to do has come directly from the leadership of those health departments. I think we need to recoqnize as well that our drug abuse programs at the county level are also doing a very great deal. I think we need to give a lot of attention there because of the overlap. Some of those may be under the bureaucracy of health departments and some may be with mental health or as a separate free-standing agency, but certainly in communities such as ours. We have an individual whose county job is to qo out on epee mee et pe ee I Si et pe 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 44 the street and pass out condoms and to go be handing out bleach and doing what we do, working directly on the street with those population groups that may be hard to reach and hard to serve, and that is happening from our drug dependency program. .At the same time we have major educational efforts and the other medical efforts going out under our health department, and I think that you will find that is not unusual across the country. I'm sure there is more that can be done and there are some areas where a real effort needs to be undertaken that hasn't occurred today. I think we will see more of that going on, MS. AHRENS: Thank you. Larry? MR. KESSLER: Commissioner, I have an unusual question perhaps, but it's one that I'm concerned about and I'm impressed by your efforts in the association. And I believe you when you say you have effective task forces that have helped to educate other county commissioners and officials. Has there been any effort to help officials talk about AIDS in their campaians? One of the thinas that occurs to me over and over is that people whether they're running for commissioner or govenor or president or mayor can talk about parks and roadways and hospitals and Medicaid but they don't get specific. And here we have a moment when the leaders, or people who are trying to be elected as leaders, can and should be talking about this particular epidemic. They certainly talk about drugs, often 45 talk about the leqal issues involved in drugs and druq wars and so on, but rarely do we find people or candidates talking about the intersection of the epidemic of druq abuse and the epidemic of HIV or talking about things like condoms or talking about things like sex education in schools that would include AIDS education or talking about AIDS in the community as a human issue, and I'm wondering whether your association has grappled with that? And perhaps -- this is a suggestion if you haven't already done it, perhaps that might be the next layer to help candidates put AIDS on the agenda because as we heard from Dr. Allen, we're not getting it through the media often, we're not getting it through programming, but I've never seen a program ad or a PSA for a candidate say AIDS is one of my priorities and if I'm elected we're going to do the right thing. You get the gist of my question? MS. KLINGER: I do and I agree. I have never seen a campaign brochure with someone who's holding up a condom gaying. Usually it's the senior citizens or bypass or some other good public purpose activity as well. I think you make an excellent point. I think the time will come as counties have more of their own employees die from AIDS, I think you will find attitudes changing and more attention given to the subject. I have not seen it discussed as a primary platform in anyones individual campaign with possibly the exception of some candidates in San Francisco City and County but not so much 19 11 12 13 14 15 16 17 18 19 20 21 22 23 ad 25 46 other parts of the country, but I think you make a very good point and that certainly is something as we're educating ourselves and our peer educational program, that certainly is something that we can bring up and it's an excellent suggestion and can suggest that that is another issue that needs to be addressed along with all of the other problems that were being solved. Whether it's a bridge falling down that could harm the safety and the economic welfare of the community, certainly AIDS is an economic issue and a tremendous loss to business as a result of this crisis. MS. AHRENS: Ann, I have a final question here, I guess it goes to what makes community response. A lot of us think that if it ain't local it ain't real, or that people live their lives in neighborhoods and they die in neighborhoods. And if service and care is not given at the local level, it isn't going to be given, and as you travel around the country and visit counties and perhaps observe what their responses are, maybe you could just ghare with us what you consider to be the dynamic or the thing that makes for qood response at the local level and how communities that are responding well have come to do that? MS. KLINGER: I think communities that have really faced the issue head on tend to have an openness about what their county government does, is involved in, and tends to have a great deal of citizen participation in their communities. 10 11 12 13 14 15 16 17 18 19 20 21 2a 23 24 25 47 I think those are Key components of any program that we have. If the public is not accepting of a subject matter or a particular program, it's not going to go as far as if there is good community acceptance and recognition. Number one, that a problem exists and number two, that something has to be done about it. I really think that educating the public as a whole, breaking it in, working on this issue as we deal with our editorial boards in our home communities, being willing to talk about the problems honestly and openly, I think that those are some of the things that we can do. That's really a matter of community leadership. We do it when it comes to school dropouts, we do it when it comes to teenage pregnancies. Some of those issues also not only are overlapping the AIDS issue as we see now with so many babies being born with AIDS, but as we talk about those topics it's a natural to also discuss the impact of AIDS that overlays a lot of those problems. I think that is really what we can do and this is what leadership is all about. MS. AHRENS: Thank you so much. So glad you're here. MS. KLINGER: Thank you. MS. AHRENS: I know that we're running a bit late. Brian Coyle is here from the National League of Cities but before Brian comes forward there is coffee on the table. I think we'll just stand for five minutes. I'm going to keep it 10 11 12 13 14 15 16 17 18 19 20 21 2a 23 ad 25 48 to five minutes, and then we'll move ahead with out next presenter. (WHEREUPON, a short recess was taken.) MS. AHRENS: I would like to welcome at this time Council Member Brian Coyle, who I understand is the vice-chair newly elected to that. He's here on behalf of the Minneapolis City Council and is here speaking on behalf of the National League of Cities. Welcome to Saint Paul, Brian. MR. COYLE: Thank you. Thank you for the invitation. First, I would like to introduce myself. My name is Brian Coyle and I represent roughly 28,000 inner-city residents of the Sixth Ward in Minneapolis. My election in the fall of 1983 as the first openly gay member of the Minneapolis City Council; and recent inauquration, January 2nd, as Vice President of our Council after winning 80 percent of the vote for a third term represents the steady political progress that gay people have made in this marvelous country during the last decade. But ironically, during the same time that our long uphill struggle for America's grudging acceptance and even respectability has advanced, the AIDS epidemic has haunted this progress Killing off our friends and yet challenging us to create a community of caring people rather than a subculture of stranqers. As local officials and citizens, we end the decade of the 10 11 12 13 14 15 16 17 18 19 20 21 22 23 25 49 1980's faced with maior problems like AIDS, crack, homelessness, that we couldn't have anticipated at its beginning. To its credit, the City of Minneapolis has responded to the AIDS epidemic by first listening to community-initiated proposals and then by putting early money into anticipatory projects which Hennepin County, the Minnesota Department of Health, private foundations, and the community has later funded With substantially larger contributions. Although it may sound like bragging, I am proud of the role that myself, the City Council, and our Public Health Department have played since 1984 in funding first the prevention education programs of the Minnesota AIDS Project, then the mass media campaign of the Metro Consortium, a transitional housing program which the Minneapolis/Saint Paul Family Housing Fund whose board I sit on also underwrote, and a clean-needle project which reaches out to addicts, and most recently specialized education for women, people of color, and youth. As well as funding community-based efforts, the Minneapolis Public Health Department maintains its own modest but effective AIDS Risk Reduction Programs funded by both General Fund tax dollars and State Health grants. However, despite these extensive efforts in Minneapolis and around the nation, AIDS is becoming America's top public health problem, with its burden especially heavy on the cities. Even back in 10 11 12 13 14 15 16 17 18 19 20 21 22 23 a4 25 1985 when our first lobbying effort wunitina aay and straight local officials visited Capitol Hill during the National League of Cities Conference, and we've been there every year since, the city of San Francisco, for instance, was already spending more than $7 million dollars a year as the main provider of treatment, education and prevention services. At historic meetinas with Reagan health officials, House Speaker O'Neil, congressional committee chairs, and our own state delegations; we pointed out that America's cities cannot be expected to fight this crisis alone. Although annual lobbying efforts since then have helped to raise federal funding from $200 million dollars to more than $1 billion dollars a year now, local government and community-based volunteer programs are still experiencing a critical need and receiving insufficient resources from Washington. Despite persistent lobbying efforts, marches on Washington, tours of the AIDS Quilt, and more than 60,000 deaths, higher than the total American fatalities in the Vietnam War, the federal government has failed to even trickle-down funds to the community level. nb Angeles being an example of where they have avoided that role until nore recently when things are much more contentious and slow to get going. Seattle and San Fransisco being good examples where the health department did take a good role and I think the systems reflect it. I was particularly impressed by a program in Seattle I visited recently that the health department helped to generate in which they plugged together three very different agencies: a gay male substance abuse agency, Indian Health Board of Seattle, and a street youth agency to develop programming, prevention work with substance abusers, among those populations. The result ig a lot of skill sharing among those groups and they got funded by the Robert Wood Johnson Foundation for that project because they were so well coordinated. The health department made that happen and when the health department doesn't take that role it doesn't happen. You see fighting among those groups rather than cooperation and skill sharing. It's important that the health department in all of its planning and setting up programs include the impacted populations. You have to have women, you have to have gay men, you have to have the minorities impacted on the staff of a health department, on your advisory committees, and in the staffs of the agencies when you take on the problems. More specifically I want to talk about three areas; one being prevention then which is going to be obviously part of the eee ee nN EEE 18 ‘19 20 21 22 23 24 25 2Q3 strategic plan and just three points on that. A lot of what I'n going to say assumes that what's been said earlier today has been said. It's important that the local government, I think, fund the prevention work that the federal and state governments will not fund. There are so many prohibitions wrapped around the money as we know. In the state of California as late ag last year, in 1988, the words condom, anal sex, and bleach were prohibited in any kind of materials funded by our state government. It's pretty ridiculous and obviously the governor was not on our side in this situation and he has not been in California very often. So it's up to the loeal groups to fund raise and find some way of getting that money to pay for materials that are essential for prevention work. The second issue is around gay men and we want prevention work to go around to all populations but often governmental agencies shy away from, I think, funding for gay men. We heard the examples from Texas from Lori Palmer. But I think it's been my experience, it's been more the rule than the exception for that Kind of blame to avoid in any wav so you're not promoting a gay life style in the various funding sources. When I first saw the organizational chart for the Center for Disease Control AIDS Prevention Program and they started to get it together in 1987, they had boxes on their for outreach to minorities, for women and children's issues, for incarcerated populations, for health care workers, and then they had a box called special ‘10 11 (12 "43 5 14 15 16 17 18 19 20 21 22 23 24 25 OD <> ob populations. That's where gay men were because they couldn't use the word. I think a lot of the funding you see here from government bodies tends again to not go in that direction. It needs to hit all the populations and in much greater dollars, obviously. It's not over with the gay male population as we sometimes fear, even in San Fransisco. There is relapse and if you don't keep it up, keep up the drum beat of say sex and protected gex we're going to see the infection rate going back up. It was cited recently to move money out of prevention into health care and obviously that's very shortsighted and I hope you will speak against that. We have a health care crisis now in some localities because we didn't do prevention work earlier. If we stop doing it now, we're going to have an even bigger health care crisis later. Another area that we'll probably need to take up because other arms of government condone it is anti-discrimination laws. Those laws need to be in place to take out the fear and the bigotry and engage other populations in what we're trying to do work on and help them do for themselves. The last thing that we're going to help the government to do is go begging for money to do all the things that they said they want to do in their strategic plan. In San Fransisco, our health department two years ago projected our health care budget in public and private dollars as approaching $300 million onan, ee ee, me pe, ee ee ee ee ee ee ee ee ee eee ee ee ee ee ee, ee ce si, mene mut ei mn pee ps EE, mee dts ee pe mere ee ee ee 205 dollars in 1993, and that's compared to $69 million dollars in 1988. And we've since added another $65-to-$100 million dollars for early intervention work that we think is obviously critical in terms of preventing progression of disease. So we're talking about a possible gain of $400 million dollars in three years in San Fransisco. That's something the local government is obviously not going to be able to fund. And so the mayor a year ago created his HIV Task Force in San Fransisco to take on some of these emerging issues in the epidemic and it includes the corporate sector and the private sector in health care as well as the public sector and educators and religious leaders. One of the first things we've taken off on in that task force is going after money. The blueprint is there of what needs to be done but the money is not there for the blueprint to expand and keep up with need. But what if other corporations, Chevron, Bank of America, the Urbans to make sure that they're including in their insurance policies coverage for pro-health care, for early intervention of AZT, aerogol pentamidine, and with a few corporations leading that effort it's much easier to bring the other corporation along. And because we have a plan coming out of our HIV Task Force with public and private partnership we see each segment that are willing to do their piece when they see the other segments are going to be doing theirs and it's been very important that our local level take a leadership role and keep 206 1 forming these partnerships so that all the partners come into ‘ 2 place. 3 We're going after private foundation money to fund | various parts of the plan. And obviously we're going to need : 5 lobbying at the federal and state levels for the dollars that 6 are going to be necessary to keep us from going broke. 7 I wonld just conclude by saying, repeating I guess in ; 8 this area what others have said and that's the need for moral 4 9 leadership from our government. When that leadership isn't “10 there, things are much more @gdifficult at the local level and I 11 talk about the fact that in the community agencies and the ia community groups we have too often turned te anger, to begging, 13 to radical activism because that leadership has not been there 14 at the time. Our healing energies get diverted to these other 15 more unpleasant duties that we have to take on because the ‘16 federal government is not taking it on. V7 I was struck recently by a comment coming out after the ‘18 earthquake in San Fransisco, The Bay Bridge reopened 30 days ‘19 after the earthquake and the chief engineer, the man that was in 20 charge of getting it repaired fast, how he did it so quickly. Ql It was really a major piece of engineering work. And he said 22 that he had been told by his boss, the Chief of the 43 Transportation Departinnent in California, to do whatever it takes 24 to get that bridge fixed, spend whatever amount of money he 25 needed to spend to get that bridge fixed, it's a vital economic 10 41 "42 13 aa 15 16 47 19 20 21 22 23 24 25 oul link from the Bay area, and he did it. And from my perspective, AIDS is just as fixable as that bridge and wre need leaders who will say the same thing about AIDS. We're going to do xhatever it takes to get this virus stopped and to stop the dying. Until we have that leadership, we're going to have that much more activity on the local level channeling diverted as I said into the activism. A final contingent to that is when the government can't lead, I think it's very important for the government to get out of the way. We have a lot of examples of that. In San Fransisco, -- under California law, for instance, it's illegal to dispense syringes without a prescription. But we have a group in San Fransisco that's been operating for a year, Prevention Point, street workers that came together ad hoc to do a needie exchange program and the city officials have agreed to look the other way, the police department, the mayor's office, as they go about trading clean needles for dirty needles, and they have at this point up to 10,000 needles a month that they're distributing on the streets of San Fransisco in the areas where there's still a high concentration of needle users. It's been very important that our government get out of the way in that activity. I think that kind of concludes the big things I wanted to touch on and I thank you. MS. AHRENS: Larry, did you have a question? 10 11 12 13 14 15 16 7 18 9 (29 al 22 a3 24 a5 ti Q & MR. KESSLER: Tim, you mentioned the $65-$100 million dollars for early intervention. That's your plan, but at thig point you don't have any funds for it: is that correct? DR. WOLFRED: Right. The original plan outlined $100 million dollars worth of health services for intervention. That includes the doctors, the nurses, the testing, the drugs. About $35 million of that is in place right now but in the existing systems, but to pull it out we need another $65 million dollars. MR. KESSLER: Where did that initial $35 million dollars come from? DR. WOLFRED: It's a mix of city and state. Part of it is the ARMS testing sites that are funded largely by federal dollars, part of it is the existing city clinics which now do some nonitoring of HIV positive and they encourage you come in for 6 month checkups. But we have -- it is estimated up to 30,000 people HIV positive in San Fransisco and only a small portion of those are really in the health care system right now in an early intervention sense. And to get them all in and to have the services available, it's going to take that much more money. The federal money, the city providing, is also leaning on the private hospitals to do a piece of it as well. The further money about the budget I talked about is both private and public dollars and it includes health care programs, hospitals, and clinics. 10 ii 12 13 4 4 “15 16 4 18 19 20 21 23 a4 25 209 MR. KESSLER: Do you Know how much of the $400 million dollars ig now federal? DR. WOLDRED: No, I don't. I could get those figures. Those figures are going to be updated this spring by other departments as well. Those are projections made in 1988 and they may look somewhat different and certainly the epidemic looks different now with AZT and the other druas. MS. AHRENS: Tim, could vou possible tell us in about tro minutes what we should say to the federal government? DR. WOLFRED: Well, one is reform the health care system, get it to where it needs to be nor, not only to take care of people with AIDS but many other health care needs that face us and that means putting emphasis on health care which is costly, getting into prevention activities. And secondly, I think, get money particularly in AIDS to the community-based greups. Right now we're getting money from CDC to agents like HMH (ph.) which is actually putting Boston on the map, it's quite an anarchuous process. I think the best work in many of these areas goes on with the community groups and I think the federal government in anything you're talking about they gay, "Well, it's too difficult, we can't do that, it's complicated and we can't trust." I think if they put their heads to it they could come up with a system that is streamlined, opened up, and got the money down to where it use ald to be in order to get the work done in a much less expensive way too in terms of how it gets spent. I think those tro points. MS. AHRENS: Well, it has been a long day but I thought that your analogy with the bridge and the earthquake ig very germaine to what we're doing here and I thank vou for that. Thank you and ve'll see you tomorrow. DR. WOLFRED: Good. Thank you. MS. AHRENS: This will conclude this first day of work of the sub-working group and I thank all of the participants who have remained with us. Some of vou we'll see tomorrow and have a nice evening. (WHEREUPON, the first day of proceedings were coneluded. ) REPORTER'S CERTIFICATE I, Linda L. Hildreth, a court reporter, do hereby certify that the foregoing transcript, consisting of pages 1 through 210, is a true and accurate record of the proceedings to the aforementioned matter to the best of my ability. )) LINDA L. HILDRETH | Ae is] NOTARY PUBLIC-MINNESOTA | RAMSEY COUNTY 9, sae ‘ a. ovensson Eypires JUNE 15, 1993 OF eg Me 6 gg! LINDA L. HILDRETH Court Reporter 2827 North Asbury Saint Paul, MN 55113 (612) 631-4926 Dated this 20th day of January, 1990.