16 17 18 19 20 21 22 23 24 25 NATIONAL COMMISSION ON AIDS WORKING GROUP ON SOCIAL/HUMAN ISSUES BE IT REMEMBERED THAT on the 10th day of July, 1990, at 8:30 a.m., the above-named group came on for discussion before LAURIE S. KOKORUDA, a Certified Shorthand Reporter in and for the State of Texas, at Dallas Public Library, 1515 Young Street at Ervay, City of Dallas, County of Dallas and State of Texas, whereupon the following proceedings were had: ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 PROCEEDINGS REV. ALLEN: Good morning. This is the Working Group on the Social and Human Issues of the National Commission on AIDS. We are here -- we are the Working Group of the National Commission on AIDS on Human and Social Issues. We are here looking at today the obstacles to care and continuous care models. I would ask June Osborn, the Chair of the Commission, to say a few words about the Commission itself. Then I'll explain some of the background of the Working Group. DR. OSBORN: Well, I’m pleased to be able to be here and listen to the testimony given to the Working Group today. The National Commission on AIDS has three formats in which we have tried to do our work. Briefly, we are finishing -- coming toward the end of our first year of our two year assignment. The Commission was created by Congress, an act of Congress in late 1988 and fully constituted in August of '89, with the charge to try and move the national concensus about the epidemic and to be both reactive and pro-active with respect to Congress and the ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 effectiveness so far as needed AIDS policies and activities were concerned, To do this, we have elected members, three cabinet secretaries ex officio and in fact one of our --~ I'm sorry. Appointed members appointed by ~-- ten by Congress and two by president. One of those members is a member of Congress so that our hearings in full commission session more or less need to be conducted in Washington most of the time. And, so every second month, we have that kind of a meeting. In alternative months, we have been trying to visit around the country in what we call site-visit sessions. And we actually try and get a detailed sense of how a given region or a given station of the epidemic is progressing. This represents a third format in order to try and take full advantage of the talents of the commissioners which are extensive and varied. We have broken ourselves into what's called small working groups where specific themes can be developed more fully than those other two rather more formal structures allow. So, this is, I think, the third or fourth full meeting of what is called Small ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 Working Group on Human and Social Issues which will then ultimately be reporting back to the full Commission and so forth. Therefore, I am pleased to be mostly a listener since I am not technically a part of the Working Group. And Reverend Scott Allen has been leading that group and all of us that are here, and we're looking forward to hearing from you today about the facets of the theme that this Group is trying to develop which Scott will be talking more about. Thank you for your hospitality. REV. ALLEN: The Working Group felt that it was important for us to look at continuum of care and looking at testing and early we have tackled that intervention. And so, subject by having a hearing in Boston, dealing with the issue and finding some information on community-based organizations. We looked at public health issues yesterday; and now we're looking at obstacles to care today. And then we're going to have another meeting at the end of July in Seattle to continue looking at the continuum of care models and then hopefully to provide a report to the full E | LLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 pI EIS EOE NEE EEN NS ul } 1 | Commission in September. 2 Let me introduce to you the folks up 3 }| here. This on my far left is Maureen Byrnes. 4 | She’s the Executive Director of the National 5 | Commission. Don Goldman is in private law 6 | practice and the past president of the National 7 | Hemophelia Foundation. 8 Harlon Dalton is Professor of Law at 9 | Yale University and Editor of "AIDS in the Law”. 10 | Dr. Konigsberg is the Health Director in Kansas 11 | and was a former health director at Boward County @ 12 [ain Florida. 13 And Eunice Diaz is from Southern 14 | california and she has worked extensively with the 15 | Spanish community and also is an Adjunct Professor 16 j; at University of Southern California in Family 17 | Medicine. And Larry Kessler is the Executive 18 | Director of the AIDS Action Committee in Boston. 19 So, we are here; and it’s time for our 20 ; first presenter, Warren Buckinghan. 21 MR. BUCKINGHAM: Good morning, 22 | Reverend Allen and Dr. Osborn and the Commission. 23 It's a privilege to appear before you today. © 24 | You've been in Dallas several days. And even 25 | though the New York Times is universally ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 recognized as the newspaper of record, those of you who read the Times I hope have realized that you are not in Calcutta. As our society moves fully into the second decade of the HIV disaster, it is timely that we revisit the subject of barriers to care and re-examine earlier notions about just what constitutes an obstacle. Many of the first identified difficulties such as institutional homophobia are still present in some communities and other old barriers have fallen, but new ones seem to have emerged with each change in the face of the epidemic. What has been constant over time as new impediments have emerged is that they all can logically be grouped under four broad headings. Begging your pardon, especially Commissioner Dalton, for the alliteration, I would like to speak today of barriers that stem from mythologies, morals, myopia and money. I will provide one or two examples of the barriers in each as a focus for your thinking and planning. What might I mean by barriers which originate in mythologies? Our society has a full ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 complement of preconceived notions about subsegments of the larger whole and how they will or will not act in response to certain situations. We hold, for example, nearly universally to the belief that intravenous drugs users will not care for themselves and for one another. That is a wrong assumption that should be called into question at every opportunity. Innovative pilot projects in Newark and our drug-ravaged cities have demonstrated that with minimal incentives, IV drug users will, in fact, become active participants in their own care and can be trained for social and pratical support providers for their peers. What other myths color our perceptions of who needs what and how they will get it? Far too many of the well-meaning human care professionals and volunteers responding to the growing number of infants with HIV -- the over majority of whom are African American or Hispanic -- rip families assunder. They do this because their myths tell them that mothers who would prostitute themselves or use illegal drugs are incapable of caring for ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 their infants. That is wrong, it is immoral and it is ethno-elitist in a most offensive way. We should instead be developing programs which provide basic skills and support to mothers, grandmothers, aunts and sisters who can deliver care to children who have no business locked up in hospitals or other institutions but should be at home whenever possible and for as long as possible. The myth is also afoot in many cities that the gay and lesbian community is financially and physically spent and can no longer be the voluntary backbone of the HIV response it was in the first decade of AIDS. We should not accept this legitimate concern as accomplished fact but should instead be feverishly developing innovative strategies to keep that critical community at the center of AIDS care. Part of that planning must include identifying new alliances which can help spread the burden. Which leads me to the barriers stemming from myopia. I cannot begin to number the legions of people and groups here and across the country that I've heard bemoan the fact that one group, or ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 another or one person or another, was sure to be at least unhelpful if not downright hateful, or as is sometimes alleged, “criminal”, towards persons with AIDS and those trying to care for then, While the fact that people and institutions have been hateful can never be forgotten or ignored, I would also like to point out that no organization asked to be part of the AIDS response in this community -- from the Salvation Army and United Way to proprietary home-care agencies and nursing homes to monolithic bureaucracies like the VA and Social Security -- has said no. We have definitely proven that it doesn't hurt to ask. I agree that we dare not become complacent about our opponents, but would argue that we need to be at least equally vigilant in seeking out allies. Four years ago in Dallas, pastoral care response to AIDS was in the exclusive and exhaustive hands of four members of the clergy. Today, we have an AIDS [Interfaith Network with dozens of cooperating parishes providing Care Teams and nearly one hundred rabbis, priests and pastors available to meet both the spiritual and ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16. 17 18 19 20 21 22 23 24 25 10 temporal needs of persons affected by HIV. The Metropolitan Community Church of Dallas, with its roots and mission in the gay and lesbian community, was neither ignored nor excluded as the Interfaith Network developed but was and is a full participant. Organizations seeking to develop services in the Hispanic or African American communities must likewise recognize that many valuable lessons have been learned by groups with their origins in the gay and lesbian communities. Our society's impaired vision is also. demonstrated in the fact that so few communities are actively planning for the social and health services that will be needed when AIDS reaches third- and fourth-wave cities. Their failure to prepare means these neglectful towns will forever be in a reactive posture. What this translates into in terms of human care is that they miss the opportunity to conserve lives and resources and that is being conservative in the most caring and constructive sense of the word. If we are not anticipatory as a society or as institutions, how can we be such in our dealings with men, women and children in ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 11 need? If, on the other hand, our intent is to identify all potential societal resources and engage them in the AIDS struggle, we can translate that at the service delivery level to helping people identify current or potential resources for their life situations and bringing them to bear on Fulfilling a plan of care. And what of the role of morals in raising up barriers to care? The obvious: Assertion by zealots that AIDS is a more judgment meted out in response to immoral behavior is old pat and seems to be dissipating as the moral stalwarts are brought up on morals charges. What is less obvious, and more odious, is the lingering fallout from these pronouncements. The number of people adrift in our society with deep wounds resulting from immoral judgment they lay on themselves -- that I am not worthy of help and deserve this death sentence infection -- cannot be counted and dare not be ignored. Our chalienge is to be a compassionate and a moral society which listens for the silent cries of these brothers and sisters of ours and ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 12 gently insists that they seek the care available to then. The way we resolve ethical dilemmas around HIV services in this country epitomizes the moral category of barriers. AZT in early infection has proven effective in prolonging life and improving the quality of life for persons who receive it. We have changed the labels on the bottles to reflect that fact, and morally mythologize that we have somehow made that aspect of early intervention a reality for the masses. We didn't appropriate the funds to pay for the drug, though, so we've left the ultimate barrier still in place. That moral barrier which we have not ha@ to communal will to overcome promises early death for thousands. Our righteousness can wreak havoc on persons with HIV illness who also have addiction disorders, and their numbers increase hourly. Competent and dedicated professionals do all in their power to encourage these individuals to overcome their addictions because it’s the moral thing to do. But what does society offer ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 13 beyond encouragement? Months-long waiting lists, then miles-long waiting lines, for treatment. Incarceration -- or more subtle punishments -- for failure, and an artificial hierarchy of addictions where some are deemed more deserving of treatment than others. The moral failure is ours; the barriers to overcome is theirs. And now to the root of all barriers: Money. Persons desperate for assistance need to feel some sense of confidence that the agencies to which they turn will be there tomorrow. Given the current state of private and public funding for HIV services, that assurance is often absent. Not a week goes by when the press or the National AIDS grapevine isn't full of talk of the latest AIDS agency downsizing its operations or closing its doors for good. We are foolish if we assume that clients or potential clients are unaware of these facts or if we assume that that knowledge doesn't prevent people from coming forward for care. Whether it comes from the private sector or from government, the majority of AIDS care money is still called demonstration funding. This is the second decade of the epidemic and many of ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 14 us are finished demonstrating. We have proven the efficacy of our programs and are in need of stable and reliable financial support. This Commission has sought to help remove that barrier by endorsing the Kennedy~-Hatch Care Act, and those of us in the field are grateful. There is still room for funding which encourages innovation, though, and creative funders are desperately needed. We could, for example, be given the opportunity to train family members in the barrios and ghettos of America to be home-care providers. AIDS planners in city after city have thrown up their hands in dispair at using traditional sources to provide home care in these neighborhood. The easiest way over this barrier is to train people already in the home to deliver the home care. Many other creative solutions to seemingly insurmountable barriers are out there waiting to be financed. You, and we, must continue to be rigorous compaigners for adequate funding and services in response to the people in our community who are living with AIDS. We dare not ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 15 ©} 1 | relax as there is a Fifth and final obstacle out 2 | there and it is the most frightening of all. In 3 | my opinion, the greatest barrier and danger facing 4 | this nation in the decade ahead is the growing 5 | sense of malaise about this epidemic. 6 TIME Magazine, acting as though founder 7 | Luce were still alive, has adopted as editorial 8 } truth the reactionary contention that we are doing 9 | too much about AIDS. Other publications and media 10 |} are already claiming this argument as their own. 11 Even more frightening is the fact that @ 12 | numbers of young gay men are not reacting on the 13 lifesaving lessons learned in the last decade by 14 | their older brothers and that heterosexual 15 | adolescents aren't getting the message, aren't 16 hearing it, and aren't acting on it either. And 17 | they are becoming infected and they are dying. 18 We are only doing too much if we are 19 | willing to accept that doing no more condemns many 20 | for the next generations to unnecessary death. 21 Thank you. 22 REV. ALLEN: Thank you, Bob. Are 23 | there any questions? We have about five minutes © 24 | for dialogue here. Are there any questions for 25 | Bob this morning? ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 16 DR. OSBORN: Not a question, just a comment. That was exceptionally eloquently presented. REV. ALLEN: I have a question then. Would you elaborate on the issue, the HRSA and the Robert Johnson Foundation’s money and what you see your agency dealing with in the next year or so in private funding. I know being on the board of AIDS ARMS, I’m very much aware of the precariousness of the whole stability of the organizations around. So, would you comment on that? MR. BUCKINGHAM: Not just in Dallas, but in other communities around the country, this is a kind of a year of double whammies. Four years ago, the Robert Johnson Foundation established nine AIDS demonstration projects across the country. The AIDS ARMS Network here in Dallas is one of those. In subsequent years, all nine of those cities and another thirteen or fourteen have received Federal AIDS Service Demonstration Funding from the Health Resources and Services Administration. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 17 This year the Robert Johnson Foundation grants expire and the impact that will have on Dallas numbers in the hundreds of thousands of dollars. And there is no replacement funding out there for that. HRSA has extremely limited dollars for renewal applications which are going to be very competitive this year. And while I'm confident that Dallas has its act together enough to submit a successful application to HRSA, we already are on notice that we will be getting less money rather than more. That’s hard to take in a year when it’s expiring and our case loads are exploding. REV. ALLEN: And we are not even dealing with second city. MR. BUCKINGHAM: No. Those are all what would be called first place cities. REV. ALLEN: Yeah. MS. DIAZ: I was interested in your comment on the need to expand home care. MR. BUCKINGHAM: Yes. MS. DIAZ: And I'd like to just question you a little more about that. Who do you think might take the leadership role in the ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 18 training and preparation of the large calvary of people or army of people we will need to be able to do this? MR. BUCKINGHAM: Well, I think a very effective partnership could be formed between private and public sectors. In Texas, for example, Primary Home Care is a program administered by the Texas Department of Human Services. And one of the few positive aspects of the state's response to AIDS that I have is that in this state, family members can be reimbursed for providing primary home care. In terms of training and preparation, that's the barrier we aren't yet over. And I think in every community of any size across this country, the ideal institution to provide a training would be the American Red Cross. Years ago, they trained family members how to care for a bed-bound parent, how to doa bed bath, how to change the bed for the patient, how to deal with incompetence, those kinds of things. And in some cities -- Atlanta is one that I know of -- the Red Cross has resuscitated and brought up-to-date that curriculum and made it a specific. And I'd love to see something like that ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 19 happening across the country. MS. DIAZ: I want you to know that some of us are working with the National Red Cross to see that that becomes a reality because it could apply throughout the whole United States through their chapters. MR. DALTON: I heard a rumor that you were going to reduce your remarks today to writing which seemed odd because you're such a Marvelous speaker. You're obviously marvelous from the script. Having reduced it to writing, I would just urge you to put that in circulation because you managed to say many things that I think I thought about, but sure as hell have never been able to put words around it and you've done beautifully. And you should share that with everybody. MR. BUCKINGHAM: Thank you. I do have copies for you. MR. DALTON: But I didn’t mean just for us. REV. ALLEN: Any other questions? Larry. MR. KESSLER: Buck, I'm interested ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 il 12 13 14 15 16 17 18 19 20 21 22 23 24 25 20 in, I guess, hearing about the relationship that you and your board, your volunteers, your staff and your agency have with your policy makers, particularly in the State Capitol. MR. BUCKINGHAM: Okay. I think it’s easier for me if I start at the local level and work up to the state if I may. We are extremely fortunate in that two local elected officials, Roy Palmer and Dallas County Commissioner Nancy Judy, serve on our policy-making board of directors and both in that forum and individually are a regular source of what it’s all about things politic. The AIDS ARMS Network has no formal legislative agenda, neither does it have any direct connection with policy makers at the state level. We are an active participant in the Texas AIDS Network. I serve on the board of directors of that agency and share their strategic planning committee. And we are working hard to get that organization postured to make some significant impact in the next session for legislature. Responsive to your question? MR. KESSLER: Well, I think so in part. Iowas just wondering, you know, what you've ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 21 1 | done to cultivate the relationship with the 2 {legislature and whether or not that’s been 3 | successful, helpful or whether a barrier is there 4 /as well. 5 And one of the things that I'm aware of 6 | is that Texas in general has been slow to respond 7 | with dollars and resources and so on to this 8 | epidemic, despite the fact that it’s the third or 9 | fourth leading state in terms of numbers. 10 MR. BUCKINGHAM: Yeah. Very 11 candidly, AIDS ARMS has not done as much as I feel 12 | it could have and should have at this stage in its 13 | corporate development to impact decision-making at 14 | the state level. I think there's a role there for 15 }us in the future; and we're moving toward it, but 16 | most of our energies have been focused either 17 | locally or nationally for the last three years. 18 We have had some success locally in 19 | partnership with a number of other organizations 20 jand getting pretty market increased in the cities' 21 j} commitment to AIDS services. 22 The state largely in response to more of 23 | the legislative task force on AIDS in its last @ 24 | session did enact a fairly substantial increase in 25 | money for AIDS. It still is -- ended up being ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 22 about half of what folks thought was needed. You're looking for thirty-five to thirty-six million dollars and got eighteen for a two year period of time. There's definitely more to be done no question. MR. KESSLER: Okay. REV. ALLEN: I think we're going to need to be moving along. Thank you. The next panel: Eileen Carr of the Dalias Urban League; Deliana Garcia, National Migrant Resources Project, Austin, Texas; John Hannan, Positive AIDS in Recovery, Dallas, Texas; Don Schmidt, Board Member, AIDS Action Council, Person Living With AIDS, New Mexico. We'll go in alphabetical order with Eileen Carr. MS. CARR: My name is Eileen Carr and I work for the Dallas Urban League. And I'm an outreach worker for the HIV Minority Prevention Program. First of all, I want to focus on the needs of the African American community and then we'll go on to the concerns because as we know, there are many concerns and needs that create barriers to HIV AIDS service within the African American communities. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 23 For instance, it is a denial and ignorance that permeates the entire issue of HIV AIDS individual and family care. And there's a question that needs to be asked at this point: Why? Why such a denial and this ignorance within the African American communities? And I want to, you know, point, you know, a few questions towards you. For instance, could it be because the African American community feels the HIV infection and AIDS is another plot against them? I mean could it be because they feel they're being blamed again and again for something that’s negative? Or, you know, what other reason that they have to feel this way? Now, it is our belief that it's -- the answer lies in who, what and how HIV/AIDS prevention, intervention and services have been presented within our community. We feel that agencies need to know the African American background and past and their present, what's going on in their lives today. Things similar to this have happened in the past. Programs supposedly geared toward a community have lacked community involvement and cultural sensitivity. Agencies need to know -- ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 24 are we on? I want to make sure you hear me. Agencies need to know how to communicate with the African American communities. For example, how do you tell a single mother who's only means of supporting her family is through the use of sex and drugs and how do you tell her to say no to sex and drugs? Her main concern is her family's survival and that’s through the means of sex and drugs, the way she’s going to, you know, have her family supported. And again, we just simply need agencies to know that the African American communities' cultural background and social experiences are determining factors in service delivery. Again, their community’s cultural background and social experiences. Agencies can effectively address these community needs by knowing and understanding that all of the above are ways to racism and economics and must be considered if programming is to be viable. Now, since I focused then on women, I have another typical situation here. A woman with an eighteen month year old child is in the hospital dying of AIDS. The woman had not known ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 25 herself she was infected until her baby's birth. When a woman is infected, there's a Fifty percent chance that the fetus will also be infected. This woman is Catholic; therefore, she is unable to use birth control. So, she has to decide -- she's pregnant again. So, she has to decide whether she wants an abortion; but where's the money to come from for an abortion since she’s on medical assistance. This awful situation is going to repeat itself over and over again because it's estimated that ten to fifty percent of those with AIDS by the year 2000 will be poor women, women of color, single head of household and teen mothers. Indeed, no matter how much attention we want to pay to this, the question of reproductive rights for women with the AIDS virus will affect all of us. And another thing that is needed is more support groups within African American communities not only for the person with AIDS, but their families as well. The African American community at large seems to be nonsupported. Now, let’s say this is based on lack of education; but I think it’s simply based on not ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 understanding the education that’s provided to them. Agencies need to provide cultural-sensitive and relevant educational information. That is to say simply and I stress simply know how to relate to the African American communities. And it was also told to me by several persons with AIDS that one can’t get social security if one doesn't have what they cali full-blown AIDS, one or more opportunistic infections. However, some stages of HIV and ARC, they are unable to work. Again, they can't start with social security until six months after illness. Now, six months for a person with full-blown AIDS can be and may be a lifetime. Changes need to be made within this system to ameliorate their plight. And the issues of money. One client stated that his AZT cost is over $300.00 a month. He is already in the low-income bracket. He doesn't have insurance and can't get insurance. So, what is he supposed to do? What is anyone supposed to do when faced with this dilemma? And I want to focus a little on shelters as well. Shelters need more services provided ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 27 within their facilities. Residents have no transportation and they can't go to other places for pre- and post-test counseling nor for treatment. What we need to do is train the staff at the shelters to provide these services. Since most of the shelters, especially in the Dallas area, have clinics, the medical staff needs to be educated about AIDS and the sensitivity needed of the residents. The shelter population need not only agencies to cater to their health needs, but other social needs as well. Residents" primary concern is where their next meal is coming from or where their next meal is going to be served, if anywhere and also employment. Again -- REV. ALLEN: Excuse me, Eileen. You have one more minute. MS. CARR: Let me get this in. 1 know it. Just as in the minorities, handle the shelter population sensitivity and concern allows agencies to reach them more effectively. Also, I want to point out like comprehensive AIDS services offered by the AIDS ARMS Network and the AIDS Resource Center have two ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 28 barriers: Their location and lack of accessibility. The organizations are the -- the majority of these organizations are operated for and by the white gay community. Minorities live Mainly in the southern section. These agencies are located in North Dallas. We need a service organization located in the minority communities operated by culturally-sensitive understanding minorities. In conclusion, the African American community needs continuing of service, culturally-sensitive programs and staff to be at the forefront of HAIV/AIDS prevention and intervention. REV. ALLEN: Thank you. We'll have all the panelists’ opinions and then come back for questions. And so, Ms. Garcia. MS. GARCIA: My name is Deliana Garcia. I go by Dell. I'd like to speak to you about a national problen. Discussion of human and social services needs for minority individuals affected by HIV and AIDS often centers around those. members of our society marginalized by poverty, racism, language differences and cultural a@Gifferences. E LLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 29 When discussing the needs of migrant and seasonal farmworkers, these and the added factors of a highly mobile lifestyle, absence of legal protection, abysmal living conditions and alienation from their temporary community must be included, This population of three to five million people is composed of eighty-nine percent ethnic and racial minorities. They labor in the most dangerous industry in the nation with a thirty-nine per one hundred thousand death rate versus the national average of nine per one hundred thousand. They lack federal and state protection for basic living and working conditions afforded workers in other industries. They have a life expectance of forty-nine years, and suffer from an incredible assortment of chronic and life-threatening health problems as a result of their life circumstances such as chronic low-level pesticide exposure. You may already be aware of this information, and it may appear to have no bearing on the issue of HIV and AIDS in the farmworker population; however, I'd like to share with you a ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 il 12 13 14 15 16 17 18 19 20 21 22 23 24 25 ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 30 case study, a case that exemplifies all of the ills and questions involved in confronting HIV infection among migrant farmworkers. Rosalia is a young woman of twenty-eight years of age who has lived all of her life in the unincorporated colonias of South Texas. No indoor plumbing, no heating or cooling, a spigot out back for drinking water and bathing, an outhouse next to it for use by her family of eight. In 1983, Rosie was looking forward to the birth of her first child. Her young husband, Saul, and she had worked the midwest migrant stream together since childhood when both of their families went north each year looking for work. They continued to migrate even while Rosie was pregnant because every pair of hands means greater earnings when you are being paid by the bucket or the box. Prenatal care is hard enough to get when you’re stationary. When you're immobile and every day is a working day, it's almost impossible to obtain. Fortunately for them, they made it back to Texas before the baby came. Rosie had started to bleed sometime before she was due, and her family had to travel to Galveston to get the 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 31 medical attention she needed. She had to have a blood transfusion and the baby had to spend two weeks in the hospital, but they both survived. The family got back to Weslaco just in time for the big freeze of that year. The freeze meant that there were no crops, and consequently no work that spring. Things between Rosie and Saul got very tense. He began to spend more and more time away from home. Doing what, Rosie wasn’t sure, and wasn't sure that she wanted to know. He talked about having another baby, a son; but sex wasn't very good and Rosie was scared. She'd been taking those vitamin shots from the woman down the road, but she didn’t feel very good. A visit to a local migrant center after a month long wait for an appointment resulted in Rosie being seen by a caring, young doctor who was astute enough to take a good medical history. He said he needed to do some tests. A few days later, he was trying to explain the results. Rosie was HIV-positive. This exemplifies the challenge to be ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 32 faced in trying to address both prevention and treatmenmt of HIV infection and AIDS in the Migrant and seasonal farmworkers. This group as a whole lacks access to appropriate health education due to limited services and language barriers. The Migrant Health Program is only able to serve about seventeen to twenty percent of the eligible population it is mandated to serve. Culturally acceptable behaviors such as the frequenting of prostitutes and the sharing of needles to inject vitamins and antibiotics (a practice observed in a quarter of the population and seen as a positive behavior) increase the opportunity for infection. All of this occurs in a rural environment already suffering a deterioration of medical services for its permanent residents. The saga doesn’t end here for Rosalia. She must still confront the fact that the providers in the various states to which she migrates refuse her T-cell screening because they were unwilling to take on the responsibility of ongoing case management. She also has to worry about the amount ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 33 of support her migrating family will be able to offer when she can no longer work. She knows there is no work available for her husband in the economically-depressed Lower Rio Grande Valley if he decides to get out of the migrant strean. And once they are no longer migrants, eligible for health care under that system, can the indigent care system in their community provide a minimum of help? To keep from reinventing the wheel, the Federal Government should utilize existing organizations with recognized connections to the farmworker population and demonstrated expertise to disseminate funds for production of migrant-specific material, to coordinate services through the migrant health system and to extract all relevant information derived from other minority research for use by frontline providers. Many barriers to this service are inherent in the way funds are distributed. One way to overcome this is to create a network of case managers with state-wide responsibilities. Armed with reciprocal agreements, they could then ensure that an HIV-positive migrant farmworker and migrant farmworkers with AIDS received care ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 34 without overly burdening the receiving states, who only benefit from about three weeks of farmworker laborer, but happens to be the site of the ailing farmworker's medical crisis. REV. ALLEN: You have about one minute left. MS. GARCIA: Okay. If these state case managers had guaranteed access to all services across the United States, a farmworker from South Texas could be plugged into the necessary services in a northern site without anyone refusing to provide services for fear of nonpayment or impossible care requirements. A system designed to meet the needs of special populations must consider the specific characteristics of that population. It must keep people like Rosie clearly in focus so as to determine what will be effective change in people's behavior. In migrant and seasonal farmworkers, the U.S. has a marvelous petrie dish to experiment with answers. You have a group with a very low seroprevalence rate of point five determined by the CDC engaging in culturally-sanctioned high-risk behaviors with a very low understanding ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 35 of the disease. This hard-to-reach population offers a unique opportunity to develop working models for HIV prevention and treatment which could then be adapted through use of other special populations. Money for prevention must be spent now in order to avert the widespread transmission of the HIV which would result in the need for greater spending of care in the future. Thank you. REV. ALLEN: I appreciate both of your sensitivities to the time factors so the others can speak. Thank you very much. John Hannan. MR. HANNAN: Madam Chair Person, Members of the National Commission on Acquired Immune Deficiency Syndrome. Thank you for the opportunity to voice my experience in living with AIDS. After my first three years of living with the knowledge of having HIV and experiencing my rampant fear of identification and incarceration and lack of governmental support or even acknowledgment of HIV, my life became so unbearable that even increased use of drugs no longer masked the emotional pain I was suffering. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 2i 22 23 24 25 36 In June of 1986 with the good fortunate of having a comprehensive health insurance plan, I was admitted into a substance abuse treatment at Baylor Hospital in Dallas. Once in treatment, I thought I was finally ina safe and confidential environment where I could openly discuss some of the issues that for years I had been troubled by. Among these were being gay in a society that admonishes, and in most states, interprets gay behavior as illegal, the fears of carrying the HIV virus, the fear of dying, the fear of having infected sexual and drug using partners and the fear of disclosing my HIV status to my family and friends. It was in treatment that many of my fears become reality as the medical director suggested that for my safety, it would be better if I did not discuss HIV. I confronted his opinion and he stood firm. However, many other staff members saw past the medical director's fear and encouraged me to openly discuss everything including HIV disease. There was no AIDS education in place at Baylor and hospital administration fumbled to ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 37 create an AIDS one-on-one for the patients. They really fumbled when faced with how to enforce a blood and body fluid isolation policy after I had been in treatment for twenty-two days without isolation precautions. After staff members passed the buck for several days, one morning at four a.m., two staff nurses arrived in my shared room with a red isolation sign, bags, sharp containers explaining to my roommate that I had a blood disorder and these precautions were necessary. After he put two and two together, his parents arrived on the scene to confront the medical] director about their son being in the same room as someone with AIDS. They withdrew him f£rom treatment along with the threat of a lawsuit. It was then that I could no longer hold the emotional pain inside and I told all to the remaining patient population. I was graced with emotional support for the balance of my stay and successfully completed treatment. Forty days in treatment was time enough to open many emotional wounds without much time for healing. I was out of treatment and in search of a safe place to discuss all: Gay, AIDS and ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 38 drug addiction. I tried AIDS support groups; however, there were people attending those groups that were still using drugs. I got support in AA and NA; but in those groups, I was asked to refrain from talking of AIDS. After several months of frustration and finding others in my same predicament, I founded, with the help of one of my therapists from Baylor, Positive AIDS in Recovery or PAR. We adapted the twelve steps of Alcoholics Anonymous to deal with AIDS and addiction. PAR, in addition to offering the support group, established itself as an agency to offer AIDS and substance abuse education and to secure beds in drug treatment centers for people with HIV disease. During my seven years of living with HIV disease, I have experienced more roadblocks than just those centered around my substance abuse. I have experienced being unable to obtain health insurance after my HIV diagnosis. I have heard the voices of Dallas County commissioners saying if they want Pentamidine treatments and AZT, let them go to San Francisco and get it. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 39 I have been ill and without income waiting six months for social security disability payments to start. I have experienced closed doors when applying for jobs. I have witnessed housing discrimination, discrimination in hospital emergency rooms and continued abuse by society in general. One can only imagine the pain inflicted when a hospital chaplin enters the room of a deceased person with AIDS and acknowledges only the parents of that person and not the gay partner of twelve years. I have witnessed health care triage decision biased by statements such as he's an addict, she’s a prostitute, let them lie. I have seen funding, empathy and caring given unconditionally to children with AIDS as they are perceived to be innocent victims of the disease. AIDS is a virus that attacks human life. There is not a human living with HIV that is more deserving or less deserving. We are all children of our parents and of God. We are all children with AIDS. The solutions I see are as follows: We as a society need to acknowledge AIDS as a disease ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 40 rather than a moralistic issue. The same with substance abuse. We need to create a long-term drug rehabilitation lasting at least six months. There needs to be a strictly enforced and high-quality AIDS education track in all existing drug treatment facilities whether they are for-profit or not-for-profit centers. This could be done through state licensure. AIDS education needs to start among school-aged children and adolescents. There is no room for politics when it comes to education. AIDS education needs to be based on medical facts. These facts are that AIDS is transmitted by homosexual sex, heterosexual sex, intravenously and in vitro. The facts need to be taught and not denied. We need a national health insurance that would enable every American the opportunity to access our existing health care systen. REV. ALLEN: One minute. MR. HANNAN: We do not have time to wait for the system to change. We must adopt and adapt quickly to access our existing health care system and not place more burden on our public ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 41 health care systen. We must acknowledge that many people infected with HIV are currently abusing drugs and will die of AIDS an active addiction. While we can hope for their treatment of substance abuse, as long as our government is dependent on the upward, economic movement of the South American drug-producing countries, we cannot possibly expect these drug addicts will ever see through the darkness of addiction. Yet, we must provide for them dignity with AIDS and with death. I see the government response to AIDS in Dallas and in the State of Texas as a mere shadow to the response of our Federal Government. We've lived through eight years of the Reagan Administration not even whispering the word AIDS. In 1989, ten years after the first case of AIDS was recognized, the National Commission on Acquired Immune Deficiency Syndrome was formed. Today, I ask that this Commission take back to Washington and to the President my voice of hope for the future and discontentment with the past. We in Texas need a better example set by the Federal Government in dealing with the humanness of AIDS. There is nothing soft or ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 42 gentle about living with this disease, REV. ALLEN: Thank you. Don. MR. SCHMIDT: Mr. Chairman, Dr. Osborn, Members of the Commission, I'm very pleased to be here with you today to provide my testimony. My name is Don Schmidt. I'mn from Albuquerque, New Mexico. I’ve lived with symptomatic HIV disease since September of 1985 and was diagnosed with AIDS in October of 1987, I guess making me what people call a long time survivor. I would like to get that label later, but I think it's here now. I was a founder and the first executive director of New Mexico AIDS Services, and I currently serve on the Board of Directors and the Public Policy Committee of the AIDS Action Council. Poor- and middle-income Americans have faced serious barriers in accessing care since long before any of us knew anything about HIV disease. The ever increasing numbers of those of us with AIDS and HIV-.is simply expanding the pool of Americans requiring long-term care based on their individual needs. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520~-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 43 As I'm sure you know already and have learned through your role as commissioners, it has not been an American priority to adequately address that even the most basic survival needs of all Americans with disabilities. Service providers, third party payers and state and local laws and regulations all create barriers to chronic care for those in need. Dr. Ruth Finklestein from the AIDS Action Foundation assisted me in putting together some real specific looks at barriers and access problems which I've attached to my testimony for you. The AIDS/HIV epidemic has focused more attention on these long-standing problems and has made it clear that it's time for sweeping policy ang systemic changes in how America cares for its most needy. While barriers to care for people with RIV and AIDS have caused untold suffering and neglect for many, having to somehow try to address our needs in spite of these barriers has prompted the development of some creative new models of effectively addressing the chronic care. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 44 We now have the opportunity to institutionalize these new and effective ways of addressing chronic care throughout our society. And I really think this is an opportunity not only for how we treat people with AIDS, but all with chronic care and needs. We have the data showing not only the success, but also the cost effectiveness of these new ways of meeting human needs in our society. These new models are compatible with The Denver Principles which were written in 1983 as the founding statement of the National Association of People with AIDS. I've enclosed a copy of those Denver Principles because I always try to refer back. Even at this point in the epidemic, I think they hold up well in terms of what rights are, what we need from providers, what we need from society. These new models of care are based on individualized client-centered care planning and services implementation with a strong emphasis on community-based and home-based services. San Francisco provides us with probably the best known such model ina major urban area. New Mexico provides us with a model for such ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 45 services in a less urban area. When I talk about care plan, I see four component parts that need to be looked at for all long-term care folks. That's ADL, Activities of Daily Living. Housing, cooking cleaning, shopping, personal care, etc. The things we all must do to live in our society. The second is informed medical management and care based on individual needs; and as we know, those vary so much back and forth during a disease process with HIV. Third is looking at the support system, that natural support system and in what ways it needs to be beefed up so that there is adequate support to meet these needs. And the fourth is the money, the paperwork, etc., which is often times the stumbling block to meet needs in care plans. Instead of following the old costly and clearly ineffective models of putting folks away in various sorts of nursing homes and long-term facilities, these new models of care help people remain at home. Specific client services are designed to meet individual needs. The new models have shown ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 46 that family and friends supplemented as needed with help provided by others, nonprofessional others in most cases, can and do meet client needs in a better way than either large or small institutions. People prefer to be at home and can remain there with these kind of support services. Real quickly in my personal life right now, my lover is also ill, much more ill than I am at this point in time. And we deal with home care. We have home-care services coming in. We have nursing services coming in as needed. We do IV's at home. Now, paraprofessionals, these homemaker people. Eighteen hours of care in the course of the week is what we get from those folks. Two nursing visits in a week with a good outpatient and HIV clinic at our university hospital. Without these services, Rick would have been consistently in the hospital through this whole period since he was last released on the 7th of May. It’s the only way to go, I think. There are problems that really have to be addressed in order to really institutionalize this kind of model throughout the country. First, we have to locate and establish homes for those ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 47 with chronic care needs who are homeless. Then we have to understand that there are not enough volunteers. This isn't a model that’s just funded and staffed by volunteers. That does not work. If we’re really going to go to this new way of service, we've got to pay for those homemaker services and in-home services for all people with chronic care needs. New Mexico's Coordinated Community In-Home Care Progran, which is a Medicaid Waiver Program, models how to fund many of these services for some folks with such needs. A complete reversal of the whole reimbursement structures which favor institutional over home-based care is essential. REV. ALLEN: Don, about one Minute. MR. SCHMIDT: Okay. Moving now to implement these changes in how we meet chronic care needs is the smart thing to do, is the caring thing to do, and it's the only cost-effective thing to do. We as a society owe a great debt of thanks to those communitity-based AIDS service organizations and their volunteers, many from the gay communities, who have so clearly shown us how ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 48 © 1 to be the caring people we all want to be. 2 Before I close, I want to raise one 3 | other related but separate issue that we are all 4 | much more comfortable not talking about. The 5 | issue is dying with dignity. 6 AIDS has not alone prompted increased 7 | Eocus on this issue, but it has been through the 8 | context of AIDS that I have become more clear 9 | about the barriers to dying with dignity. 10 My experience has taught me that some 11 | people who are terminally ill make informed @ 12 | decisions to practice voluntary euthanasia. It is 13 | time for America to follow the lead of the 14 | Netherlands, which has established strict 15 | guidelines under which doctors may legally aid 16 | patients in dying. 17 Thank you for your consideration in my 18 | testimony and thank you for your ongoing 19 leadership in what's helping, I think, to make 20 | America a more caring society for all of us. 21 | Thank you. 22 REV. ALLEN: Thank you all. L 23 | appreciate your input. As I stated, I have a © 24 | horrible job trying to be the timekeeper. And now 25 | we can open up to the Commissioners to ask ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 49 questions and dialogue with all of you. Are there any questions? MS. DIAZ: Dell, I was very interested in the concept that you had shared with us about case management that would follow the person -- impact in the family impacted by HIV. Do you not think that that might, in view of the situation with migrant families, need to be more on a multi-state basis than just within one state because of the frequency of people moving stream into various states? I wonder what ideas you may have in trying to do that beyond one state. MS. GARCIA: I mean in all states. And so, that you would then create a quarter of case managers who would have connections, a network of connections as people went up and down the streams. While the streams are fairly set, they vary in terms of crops and how the seasons are going and who is going with what particular crop and which farmers are doing well. And so, what happens is that the state sees an influx of farmworkers but not in the same places and not in the same forms. So, it has to almost be at the ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 50 state level. And I mean state by state to have one because the way the money is set up right now, those folks coming into the state unless they are served by the federally funded 229, Migrant Health Centers are relying on state services. So, we have to be consistent with what's going on in each of the states but try and provide some connection from state to state travel. MS. DIAZ: So, how would you connect the various states? Through the state and health departments or through the Migrant Center Network? MS. GARCIA: I think that I would make it through the Migrant Center Network, but that I would make sure that the state health departments recognize that these case managers needed to have access to their state health systen because they're going to be the only ones. There are a lot of places that migrant farmworkers go where there is only a state-supported health clinic, you know, twenty, thirty miles down the road in the nearest urban center or these rural care places. So, it becomes really difficult. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 51 You need to have a state health care system in place and then use that federally-funded migrant system that could be seasonal. The migrant health centers are only open three months a year and your healith department will be there year-round so that it’s not the startup and shutdown part. MS. DIAZ: Thank you. REV. ALLEN: Any other questions? Well, I have a couple of questions. Eileen, I'd like to ask you some sharing of some of the barriers in dealing within the black community itself. Sensitivity of perhaps professionals such as the clergy and all of us. It’s not just black clergy, but white clergy and so forth. But in particular, I've had some experience of dealing in that area and would like your input as you deal with the Chamber of Commerce, black Chamber of Commerce and others. What type of sensitivity is there within the community itself to sustain education and care? MS. CARR: Like I mentioned in my testimony, the African American community as a whole is not very supportive. Because of the questions that I mentioned, they think that this ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 ‘20 21 22 23 24 25 52 is some type of plot against them and that if they ignore the whole issue -- the clergy I’m speaking of as well. If they just ignore the whole issue that, you know, they won't be blamed for anything. And another thing that they just, you know, feel like -- you would be surprised in the black community or the African American community that they still feel it's a white gay disease. It's not something that's happening to us. Until it hits them, you know, full swing, you know, then perhaps a clergy would wake up and support them because if you -- I don't know if you know that much about African American community, but we tend to go to the clergy as a whole for support. And they think, you know, well, hey, if you’re in any type of homosexual activity or any -~ they don’t even know or even want to know that there are other ways that you can get the disease besides being a homosexual. They feel like you should be out of the church as a whole. We really need to educate the clergy so they can know all about how to get AIDS and how to support. I think it’s just a matter of fear is ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 Li 12 13 14 15 16 17 18 19 20 21 22 23 24 25 53 what I think. REV. ALLEN: I have found a real punitive tone to the clergy -- MS. GARCIA: From the clergy or to the clergy? REV. ALLEN: Excuse me, From the clergy to individuals perhaps that bring your testimony out in L.A. from gay individuals -- of minority gay individuals that don't feel comfortable in any world and then find that they can’t go home and that the family members and so forth. And it's deeply disturbing to me. It's with drugs as well. Now that we are moving in this hardness to individuals and we find that kind of mentally. And it's very difficult to break that barrier. Do you have any suggestions, and you can respond, too, but have any suggestions on how to sensitize folks to -- MS. CARR: Again, you have to know the African American background. You have to know they feel like they've been down all their lives, especially the black male. I mean a black male can't go up to his family and say, you know, well, hey, I'm gay ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 i7 18 19 20 21 22 23 24 25 54 because they have enough problems already. They have enough problems trying to feed their family, trying to find, you know, shelter for then. So, I mean there are so many problems that are going on economicwise as far as African American community that it's very hard for a black male to go to his family with those issues. I mean they're trying to survive. There are other things that are going on that’s more important. You have to know their background. You have to like -- no person is stupid. You have to maybe, you know, answer some of these things as far as racism are concerned and then go on. You think you're having a hard time. I'm having a hard time, too, because I have to go through all these different changes. All you did, you know, ina white man's world, you don't realize what's going on. Honey, I'm black. I know what's going on. So, you just have to, you know, just face the issues for the background, the cultural background and just work your way up through that.. REV. ALLEN: Okay. MS. GARCIA: And when you were ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 55 talking about not being able to go home, it made me think of the fact that there were a lot of people gay and drug using and of different ethnic groups who came from rural backgrounds and went to a major urban area and were infected by whatever method and had their community there start to kind of dissolve around them because they were not entrenched in something that could provide them with a safety net. And they'd like to go home to rural communities that don't know how to deal with gayness and don’t know how to deal with drug use and don't have the broad scope kind of let's get hip social networks that you have in urban areas. These are rural communities. And not only then are they dealing with their own and trying to let their own come home, then the issue that we look at too is that if they're in a rural community where they have outsiders coming in, everybody gets blamed. The migrants coming in get blamed. They are outsiders. Kids who have gone away from living in the rural areas and come back get blamed because they have now become outsiders. So, there's really no community for people to come back to. REV. ALLEN: Thank you. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 56 MR. DALTON: Eileen, I just wanted to say needless to say, despite much of what you had to say, your observations had to do with the need for support groups within the African American community. And it was my good fortunate yesterday to spend some time with a couple of men here in Dallas with AIDS or HIV infection, both of whom are participating in a support group that -- I gather an African American support group that’s been in existence for about three months. And it is truly growing. There's a tremendous need for it. Word is getting around. And I understand that plans are in the works to create a separate group for women. And what I'm saying is there is such a need for this kind of support among people who are especially sensitive to our community. You also mentioned those needs for support groups for parents and other family members. And you're absolutely right. And in one of these homes, I sort of met the mother at the door and then she kind of disappeared. And I did sort of wonder who was there for her. I asked afterwards how she was for ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 a7 her son and she’s been terrific; but who's there for her. One thing that occurred to me as you and Scott were talking back and forth in connection with the church is that one quite real source of support for family members is from the church and that's dual. Ministers’ wives or women's associations within the church which after all are the backbone of our church are a wonderful source of providing support groups for families as well as for people who are infected. In my own town in New Haven, Connecticutt, when we had trouble cracking the black churches, it was the ministers" wives who essentially got involved in the AIDS care business and have done a tremendous job. I just offer that. MS. CARR: I'm happy for you because I've gone to churches and I've asked and I've asked. As a matter of fact, one of my coworkers, Erica Thomas, she's asked for support from the church and all the little -- and most churches do have other organizations, women organizations as well; but see, they feel if they get involved, you know, well, someone's going to ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 58 find out that we're involved with this. Now, we do have a care team that's coming out of St. Luke Community United Methodist Church; but it took them so long to come forward, you know, to decide whether or not they wanted to do that. But they have come forward and I think, you know, that's great. And maybe, you know, that could start something new for other churches to just come forward and help their families. MR. DALTON: I also just wanted to say briefly that I always find it useful when people talk of their own personal experiences as John did, and as Don did a little bit. And you may wonder whether it's helpful, but it’s tremendously helpful. That kind of detail is useful for all of us. For example, John, your comment about your experiences in the hospital will be terribly useful to me when talking with hospital types about confidentiality and their sort of talking about their systems and this and that. And I can Say wait a second, let me tell you a story. And it’s a wonderful way to break through a lot of the BS, excuse the expression. And it’s obviously dadifficult sometimes to put your personal pain out ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 59 there on the table. And, Don, you've done it many times, but it still can’t be easy. But it's helpful to us. So, thank you. REV. ALLEN: Larry. MR. KESSLER: Eileen, I have two suggestions in response to your comments. One is a tactic that I've seen used with ministers in the Boston area. When we try to get individual pastors involved, they wouldn't respond; but when we convinced them that maybe they could do it ina large block, we started several. About this time two years ago, summer of "88, preparing them for a Sunday in November, so that on a given Sunday, the Sunday right before Thanksgiving, seventeen black and Hispanic congregations all preached on AIDS. And they found that a more comfortable way to get into the community and felt safer doing it because they didn't feel they'd get picked off for raising an issue. And the city participated, the mayor visited as many of those churches as possible also that Sunday morning. There was literature for all the congregants. It seemed to work. It broke ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 60 that barrier that was there about not being in our community. Another suggestion I have about your own community-based organizations, I agree with you. I think they're necessary. One way to help bring them about, however, I think is to get involved with existing agencies as volunteers. That's a great training ground. It's a good place to learn the skills, to learn about AIDS, to learn about the psychosocial issues. And as we've gone around the country, we’ve seen that actually happening where communities of color have for a time joined some of the groups that were perceived to be all white. And generally, they’re not all white; but there is a perception. And I know I yesterday visited some of the clients that AIDS ARMS Network serves, and many of the clients that I visited were black and Hispanic. So, they are getting services. And one way to build your own services is to get the experience somewhere else, come back with a cadre of people who have knowledge, have picked up some concrete skills that can say now let's do it ourselves. That's just a suggestion ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 61 that might work. MS. GARCIA: Can I speak back to you, Mr. Kessler? MR. KESSLER: Sure. MS. GARCIA: We're a national organization. And I live in Austin and I do a lot of work with our local community. And I had a conversation yesterday with an AIDS group in Austin that was gay-founded and predominantly white and had done a great deal to expend itself. But the conversation focused around minorities that was going to come up through the State of Texas. And they were saying what is it that we can do to kind of create ourselves or fashion ourselves in the appropriate model to go after this money. And after I kind of pulled myself up in my chair and felt all my hair go straight for the first time in its life, I stopped and said you really have to look at it from the position of your work being to empower others. That is not as rapid as you might want it to see happen, but it is our job. And as organization of individuals, that should be our conscious. And I offered the suggestion that they ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 62 look at roots that they could step into without infringing on the CBO's that were trying to effect their community. One, they have a good workplace model, AIDS in the workplace, do that. Extend it to all businesses and then look for black businesses they can work with. They have inroads in the gay community. There are very few people in CBO's particularly who feel that they can access gay minority communities. And that was an interesting thing. The other thing that I suggested though is that they kind of reserve this sense of we can do it better because we know how to do it and we've been successful doing it and we can show you how. As difficult as that is to overcome because I feel that it is sincerely based in a desire to do well and to have some action now, that they back up and realize that they might be better serving these organizations by providing technical assistance. Let us show you how to do the statistical analysis. Let us show you how to write. a grant. Let us show you how to write a grant report. Let’s do your midyear report for you. Let’"s do your end-of-the-year report for ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 i8 19 20 21 22 23 24 25 63 you. We'll really show you how to tap dance and we'll introduce you to the state health system and to the Federal Government and to the CDC. We won't hold on to those reins. We'll let you figure it out and work it out and build that political base of your own. And out of expediency, we often lacked that willingness to empower, you know. And people want to stand around and argue. Well, if they really were interested, they'd learn how to do this themselves. And political negotiation is not that easy to learn. So, that has to be something that we encourage groups to focus on. MR. KESSLER: I agree. I think both sides have to be open to the possibilities. And my third comment is, Don, I wanted to thank you on behalf of the Commission, but also I think on behalf of the country. In the last five years, you have traveled the breadth and depth of this country in talking about the New Mexico model, really bringing a perspective from people with AIDS. You've been a really clear and articulate voice, a very sane and reasonable voice that I find extremely helpful. And I know all across the ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 i5 16 17 18 19 20 21 22 23 24 25 64 country people have raised your name as someone who has been incredibly articulate about empowerment of people with AIDS and also empowerment of the community-based models. And I thank you. MR. SCHMIDT: Thank you much. REV. ALLEN: John, you had a comment. MR. HANNAN: I'd just like to comment briefly on what you were talking about with the gay organizations and wanting to maybe restylie themselves to accommodate some minorities. You know, what we lived with as far as grass roots organizations was basically eight years of totally grass roots funding. And now that there is some money trickling in from various agencies, a lot of those grants are fashioned to avoid being used by gay organizations or at least the monies footnoted for certain types of use and language. And so, you know, as someone that has been involved in the grass roots movement for a long time and has fought, you know, terrifically, Iocan understand exactly what the desire is to ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 65 change, to accommodate minorities and frankly to not be real willing, okay, to offer grant writing techniques. That's an art that is highly cherished in funding circles. MS. GARCIA: I get big bucks for it, but what I'm trying to say is there are organizations who, if they were smart, they'd parlay that talent into saying we will write for small groups and what you need to do is write us in small dollars, fifteen hundred, three thousand. Next one five thousand. We'll do your statistic analysis. We'll do your grant writing. And then if they've got six, eight of those CBO's turning to them for TA even if it's Materials. I mean all of those things that can fall under it, then that AIDS organization is now bringing in eighteen thousand, thirty thousand that they couldn’t have counted on from -- except for maybe one position, a position and a half. But it is money that they can start to develop to diversify their funding base. The money now coming down from all sorts of coalitions. And by God, they need to position themselves well. MR. HANNAN: I agree with that and ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 il 12 13 14 15 16 17 18 19 20 21 22 23 24 25 66 part of my testimony was about bringing the humanness into AIDS. You know, it for so long has been us against them in mentality everywhere. And I think to -- you know, while we need to continue the programs, you know, I don't see exactly that -- there can’t be care provided within the existing organizations that are working. I mean that’s just --~- REV. ALLEN: Let me -- Don was next. This is very helpful to us. And we appreciate all your input, your candidness; and we want to encourage that. We're grateful for this kind of dialogue. MR. SCHMIDT: Real briefly, 1 asked you to look at the mirrors here. I come from a community with the highest population of nonwhite folks in the state -- I mean the state with the highest population. We have folks in need from all communities. And when you get down to it when you're talking about client center care planning and services, you build into that system and model that the client comes first. That's where the agenda is and sensitivity to his or her needs is what it's all about. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 1] 12 13 14 15 16 17 18 19 20 21 22 23 24 25 67 And so, here we have the discussion about is the money for supporting of those services going to go to the gay organizations, the Mainstream organization, the organization of color, etc. Quite frankly, the answer is all of the above and working together and doing needs-based assessments and splitting the pies in fair ways to communities which is different town to town to town. But what this mirrors is the same thing we have in terms of long-term care needs for people who are not people living with HIV. And we have these barriers. Should the HIV money all go to HIV specific communities? The reality is we need national health care. We need new and community and home-based ways of serving long-term needs. And these barriers of not AIDS not -- HIV not HIV of color pigmentless -- you know. Those are artificial barriers and those are the big barriers we're letting get in our way by being combative, not cooperative. REV. ALLEN: Eileen. I'd like to say there are several Commissioners who would like to participate in this. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 © 1 MS. CARR: He basically said what I 2 | wanted to say. You know, we're like talking about 3 | what organization and what monies. And we've just 4 | lost track of the people that actually have the 5 | AIDS and have the disease. 6 The reason I brought that up was that 7 | because I have had a person with AIDS to go to 8 | some of the agencies over in what they call] the 9 | white gay community, and they have been turned 10 | aside because their main concern is well, you 11 | know, we need money. @ 12 And, you know, I think it's a money 13 j thing. I’m not into this money game. My main 14 | concern is helping. I don’t care who has it. 15 | Black, white, yellow, green. We need to start, 16 | you know, focusing on helping the persons that 17 | actually have the disease and as well as their 186 | family and stop trying to, you know, like getting 19 | more money than the next organization. 20 I want to bring this up another point. 21 | When I was asked to come here from the Dallas 22 | Urban League, I called the AIDS Resource Center. 23 | I want to get it right. The AIDS Resource Center © 24 | to see about getting some information from them as 25 far as the black gays coming to them for help. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 69 1 They in turn called I think his is Ted 2 }jand told him that I called up there saying I 3 | didn't know anything about the AIDS epidemic. I 4 | needed help from them. What? I didn't call over 5 | there for that. I called over there to -- they 6 | didn’t even want to help me. They wanted to -- 7 | you know, why wasn't we invited, why wasn't we 8 | invited to be here. I mean I don't care about the 9 | popularity or the money and all this. We need to 10 | focus on helping the persons that, you know, have 11 | the infection. 12 MR. DALTON: Before you all clasp 13 | in each others arms in agreement, I actually think 14 | that this has been really quite useful and I want 15 | to thank John for saying something really 16 | difficult, but really very honest. I don’t think 17 | we're going to get to the point of Don's wonderful 18 | millennium until we first acknowledge what are 19 | some very real tensions and conflicts. 20 I don’t think I've ever heard anyone put 21 it quite that way, John, the experience of 22 | certainly gay and white and their inception and 23 [having disgruntled volunteers and the money starts 24 |} flowing in and it’s earmarked for these other 25 | groups. And you have all a good game. Yet, you ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 70 want some of that money, too. And once you sort of accept that, it’s a little easier, I think, for at least fledging organizations to understand why you're being a little bit resistant with that technical assistance. I really appreciate your candor and that was very useful to me. You talked about empowerment that the multi-cultural health coalition, that group that's being formed here. MR. SCHMIDT: The group Phil Morrow started to form here. MR. DALTON: Here exactly. That group I trust will be guided by you and others’ wisdom about having empowerment in our communities and being really, really the central feature of what they do. The fact of the matter is that these quotes from gay organizations that the first generation of gay organizations really were very helpful in empowering the gay community. And I think that's almost as important mostly the white gay community, but it's important to remember that. And that’s another reason why it's hard for those organizations to sort of open up because they have performed this very important ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 71 sort of cultural function quite apart from AIDS. And it seems that we need to talk about those kinds of things, get them out on the table. Maybe not this table in this room, but it’s to y'all to keep having this conversation and not shy away from the conflict, but sort of work through it. REV. ALLEN: Charlie, do you have something? DR. KONIGSBERG: First of all, I found this to be one of the most interesting and useful and stimulating panels I think we've had in any of our sessions. The fact that you talked to each other was unusual and we ought to encourage more of that. It was quite excellent. I'm a state health official and being a local health official and sometimes have been quite concerned about the grant writing skills and the accounting and accountability skills. Larry Kessler and Ii have had this discussion before and have become convinced that there needs to be some sort of an effort on the part probably of a lot of people, existing private organizations as well as government, to try to work with these groups. And it’s not only the right thing to do, I guess it has a practical side in that there's ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 72 the advocacy role. And very often, your groups can do what we in government sometimes won't do but sometimes can’t do -- there were some questions about that yesterday -- as well as the types of service delivery the Government needs to depend on the groups. But somewhere along the line, I guess what I'm really trying to say is that the Commission probably needs to deal with that in terms of one of our recommendations. IE any of you have a reaction to that, I would appreciate it. REV. ALLEN: In writing? DR. KONIGSBERG: Yeah. Thank you. MS. DIAZ: Just a brief comment first to John. One of the things that we find existing -- that is lacking throughout the country and that is existing -- nonexistent is those months of care within the drug rehabilitation and drug communities that are specific to women. And I'd just like to highlight that because it was not mentioned in your presentation specifically, but with an increasing number of women who are HIV-infected and their offspring, it’s really important to review those models of ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 1i 12 13 14 15 16 17 18 19 20 21 22 23 24 25 73 care. They're very women-specific. To you ladies, I just enjoyed 30 much the dialogue because for the last nine years, I have been in frontlines of community organizations both of whom you represent here today. But I just would like to add one thought. Coming from Los Angeles and having worked with many efforts that initially started within the white gay community, I found a tremendous enrichment to what is now going on in the Latino communities and the black communities from actually having work side-by-side as partners within organizations that started out of the white gay community. Give you an example: AIDS Project Los Angeles is one of the largest organizations, except for in New York, and it was our being there from the very initiation of that organization, being part of the board and working hand-in-hand with our white gay men counterparts that led into successful transfer of knowledge and experience, as Larry has talked, into the Latino community where now we have our community-based projects that are each developing in a growing sense with expertise similar areas. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 74 When you talked about the need to establish a model immediately in the black community, I don't think that with the resources you have you’re able to start a model that will encompass all the services in education, service delivery and advocacy; but you may have to now move that very, very slowly in partnership with other organizations and then transfer that kind of knowledge. And I would just dare say unless you do that, it's going to be very difficult to immediately implement a model that is already successful somewhere else. MS. CARR: Please. You tell me how because we have tried to work along with these white gay organizations that are not being responsive to us. You know, I can only speak for Dallas. I don't speak for Los Angeles. You tell me how to be a part of the board, how to be a part of the committee. You know, if you show me how to do it, I will go over there now and work along with them. MS. DIAZ: Iwill -- MS. CARR: Because I am not getting that response here in Dallas. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 75 REV. ALLEN: We're going to give the next group a little more time here considering. But just to close this out, I know your frustration; however, on the AIDS ARMS Network, there are minorities, there are people. Phil Morrow was on there. And the AIDS ARMS Network has really worked expanding minorities' participation. And there is a frustration, and I think the frustration is that there's not enough money. It’s not with each other as much as it is with the fact that where is the resources. MR. SCHMIDT: It's Government divide and conquer here in Texas. And we're falling into it. It’s crisis. REV. ALLEN: That's one thing that I did not hear is the fact that what we're dealing with is not a large enough pie. It’s not that the piece is here and bringing in. MS. GARCIA: It’s a long-held tactic of this Government, and we are just seeing it on a new front. REV. ALLEN: Pitting one group against another. | MS. GARCIA: Pitting one group against the other. And the thing that -- you ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 76 know, I got lost in not being more appreciative of the point, but if we could find some practical ways to introduce groups into a coalition so that the pie gets spread out. MR. SCHMIDT: It's client-centered. If we stayed that way, we'd become a coalition as well. MR. DALTON: Let me close the account. I want to thank Larry Kessler for starting this brouhaha out by mentioning and sounding like an insensitive comment. I do want to say though that one thing I’ve learned in Boston is that the organization that Larry heads, the white gay organization, has among other things provided some of its money, passed it on to Latin organizations, has, in fact, elected not to compete with the newly started organizations for money and has stepped out of the way. And those are some of the things that need to be done with this small pie that we have. I wanted to thank Larry for what, in fact, he has done in Boston for people. REV. ALLEN: Okay. We got to move on. Thank you very much. I would like to say to ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 77 the next panel that as you come, you probably know who you are, but Barbara Aranda-Naranjo, Robert Dickson, Timothy Panzer and William Waybourn. I would also like to say that as we change over, I would like to keep the time of the testimony at around six minutes so we can get into the dialogue. But I would like to keep the testimony time to six minutes a piece so we can have more enriched dialogue than we had here. So, we'll start and then have dialogue. And we will just go again in alphabetical order. Is Robert Dickson here? He wasn't scheduled until one thirty. Is there somebody from one thirty time that is here and would like to switch? Let's go ahead and go. Barbara Aranda-Naranjo, South Texas Children’s AIDS Center; Timothy Panzer, Valley AIDS Council, Harlingen, Texas; and William Waybourn, Dallas Gay Alliance. We will go ahead and start with -- I guess we'll go ahead and start with it's Timothy Panzer, then Barbara, and then Willian. MR. PANZER: I think my testimony is six minutes and twenty seconds. REV. ALLEN: No slower. MR. PANZER: IT’ll try to speed it ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 i1 12 13 14 15 16 17 18 19 20 21 22 23 24 25 78 up. Reverend Allen, Dr. Osborn and members of the Commission, I'm thankful for the opportunity to provide this testimony and to present the viewpoint of the community-based organizations responding to the needs of persons with HIV living in rural areas and small towns. Since 1988, I've served as Director of the Valley AIDS Council, an AIDS education and service organization in the Lower Rio Grande Valley on the Texas~-Mexico border. Our organization serves an area of over forty-two hundred square miles with a population of about seven hundred thousand. Approximately, eighty-five percent of the area's population is Hispanic and twenty-five percent of our residents don't speak English with any fluency. Two of the three poorest Standard Metropolitan Statistical Areas in the United States are in our service area. According to a report released by the University of Texas Valley/Border of Health Task Force, at least fifty percent of the area population is medically indigent. And even basic data on many of our health care problems including STD are unreliable because so many area residents ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 79 1 | seek care in Mexico. The nearest major U.S. City, 2 }|San Antonio, is a Five-hour drive away. 3 In this context, there have always been 4 | problems with access to health care, especially 5 | for persons with chronic disease. And it’s in 6 | this context that an increasing number of persons 7 | with HIV and AIDS are struggling to find the 8 | services they need to go on living. 9 In an area that desperately needs health 10 | care resources for the poor, the health care 11 system -- and the word system really doesn't fit 12 |} here -- is grossly out of conformity with need. 13 The two largest cities in the area have 14 } four hospitals, all of them private, for-profit 15 | institutions. The only public hospital in the 16 | region has extremely limited services and is 17 j underfunded and understaffed. It has no emergency 18 | room and no ICU. Its pharmacy’s formulary does 19 [not include many of the basic medications 20 | indicated for patients with HIV. Outpatients do 21 not receive CD4 monitoring until they can pay for 22 | the lab costs. 23 Access to outpatient care and early 24 intervention for persons with HIV is even more 25 | limited, especially if the individual is ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 80 asymptomatic. Two of the three community/migrant health centers in the area that are supposed to be addressing the health care needs of our indigent patients are currently not accepting new patients. Even for those HIV patients already under the care of the community health centers, important preventive therapies such as aerosolized Pentamidine are not available. A handful of private physicians have been providing primary care for the vast majority of HIV patients in the area, including indigent patients. Bowever, the care that these physicians can provide is limited when the person with HIV cannot afford medications or required lab tests. Because of the lack of outpatient primary care service for poor persons with RIV, patients seek care through emergency rooms and experience more frequent hospitalization due to improper outpatient management. An area like ours can ill afford an overutilization of these scarce and costly services. Agencies providing counseling and testing programs do little or no outreach to at-risk populations. Without a support system of early intervention and primary care for ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 81 HIV-positive individuals, testing programs have few incentives to offer at-risk individuals to find out their HIV status. Bad things happen to people who find out they're HIV-positive. Our agency provides both HIV prevention services for the community and social services for HIV and AIDS. While we rely heavily on volunteers for the provision of many services, a rapidly growing case load has stretched our volunteer resources beyond our capacity. Our current caseload of fifty clients represents a three hundred percent increase in clients in less than a year. And that other case management and service delivery for these clients is time-consuming and labor-intensive, especially due to the wide geographic distribution of those in need. Less than twenty-five percent of our agency’s clients have private health insurance. To be Medicaid~-eligible in Texas often means to have a monthly income below the monthly cost of your AZT and Pentamidine. Less than twenty percent of our clients are currently Medicaid-eligible, and almost none live long enough to qualify for Medicare. That means that over fifty percent of our clients are completely ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 82 medically indigent. The Texas Department of Health administers an AZT program to provide the drug for medically indigent patients who are already symptomatic, but this defeats current efforts to initiate early intervention strategies. T-cell monitoring is unavailable for the non-paying patient. To the institutional and financial barriers I've already outlined, we must also add more difficult to measure social, cultural and language barriers that limit access to care ina predominantly rural minority community. What can be done to erode those barriers to care? I'll divide my suggestions into two categories: (1) solutions requiring significant financing (at least initially), and (2) solutions which require little or no financial investment. In the first category, I believe that in the short-term, our current human resources in health care (both in the public and private sectors) could better absorb an increasing burden of HIV patient care if there were better back-up systems, especially in terms of funding for HIV-related medications, laboratory costs and ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090_ 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 83 other hard cash items. However, we must also have more comprehensive outpatient primary care for the poor. In an area like South Texas where the majority of persons with HIV are indigent even before they get sick, the provision of the accessible outpatient primary care for the poor is essential. Poor areas with significant numbers of HIV-infected individuals cannot be served well by profit-motivated institutions. In the category of nonfinancial solutions, there are a lot of “hearts and minds” issues that must be confronted. Public health officials and health care providers must be given incentives to become pro-active. The responsibility for HIV care must be shared in an area where there are few specialists and a widely dispersed population. This requires, however, leadership and encouragement of the respected peers of the health care providers themselves. Some problems require, not more funding, but more flexible funding which can be used to target the unique problems of rural and small-town communities. I've presented the view from a ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 84 particularly unique region of America, but I believe that our problems are shared by many other nonurban areas in the U.S. And HIV, as you know, is becoming an increasingly ruralized problem in our country. Thank you for the opportunity to speak with you today. REV. ALLEN: Next on the list is Barbara. MS. ARANDA-NARANJO: Reverend Allen, Madam Chair Person and members of the Commission, thank you for the opportunity to share my testimony. It comes from a multidisciplinary team. My name again is Barbara Aranda-Naranjo. I'm a Registered Nurse. I'ma member of a Multidisciplinary Care Team concerning children and their families in South Texas. This includes children that have acquired the disease through sexual abuse, through transfusions. Include in the majority are hemophiliacs and parents who have acquired the infection through high sexual activities, transfusions and IV drug abuse. I'd like to give just a philosophical overview of the positive and negative responses of ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 85 people in our society towards this AIDS epidemic and then share with you observations and recommendations from multidisciplinary approach or care of AIDS infected families. Nine years ago, our country's physicians identified a new disease, Acquired Immune Deficiency Syndrome, better known today to all of us as AIDS. This disease, now an epidemic in our country, is changing the course of history for us all. AIDS has and continues to devastate families, communities, nations and the world. Simultaneously, this epidemic has caused a variety of positive and negative responses by people in various communities. Some of these positive responses are as follows: People have united to create innovative approachs to educate and prevent further spread of the epidemic in their communities. There has been a resurgence among scientists in the study of infectious diseases in order to Find drugs to combat the HIV virus. Physicians have taken innovative approachs in their care for people living with AIDS. Social workers, nurses and other health care providers have formed multidisciplinary teams ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 86 in an effort to facilitate the needs of people living with AIDS. Local, state and federal government agencies have responded passing legislation to provide funding for the care of people living with AIDS; perhaps not as timely as many who are afflicted with the BRIV virus would have liked, but nevertheless, they did respond. Churches have responded in many ways, one of which is to form care teams for people living with AIDS. There has always been, unfortunately, devestating negative responses, many stemming from Giscrimination against people living with AIDS. According to retired Admiral James D. Watkins, ex-chairman of this Commission, said, “the threat of discrimination is the most significant obstacle to progress” against the epidemic. I will not enumerate the individual community discrimination that has occurred in the country. I think the press has covered these incidents as they have occurred all too well. These positive and negative responses continue to occur. simultaneously and the hope is that the positive actions will prevail. In reflecting on these responses, I am ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 87 reminded of the words written during the French Revolution by Charles Dickens and I quote, "It was the best of times. It was the worst of times. It was the age of wisdom. It was the age of foolishness. It was the epoch of belief. It was the epoch of incredulity. It was the season of light. It was the season of darkness. It was the spring of hope. It was the winter of dispair. We had everything before us. We have nothing before us. We were all going direct to heaven. We were all going direct the other way." This period was much like our present. While keeping these words in mind, I ask even each of you and ask myself where are we today in the AIDS epidemic? As I work with people in various settings and families and observe the struggle and the struggling unity of communities, I want to say we're in the best of times. When I observe people of every color, ethnicity and creed come together for preventive education programming or fundraisers, I want to Say we're in the best of times. When I see a child able to attend school without discrimination, I want to say we're in the best of times, ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 88 1 Conversely, when I see an HIV-positive 2 | pregnant drug-addicted mother who is giving birth 3 | to her second child, I sadly say we're in the 4 | worst of times. When I observe a couple who is 5 | HivV-positive being turned away by their families, 6 | I sadly say we're in the worst of times. When I 7 | observe an HIV-positive homosexual not receiving 8 | compassionate care from a health care provider, I 9 | sadly say we’re in the worst of times. 10 The reality is we’re in the best and the 11 | worst of times in the AIDS epidemic. On June @ 12 12th, 1990, the World Health Organization stated, 13 "The rapid spread of the AIDS virus in developing 14 | countries means the disease will be more 15 | widespread in the next century than previously 16 | thought.” The current projection is that up to 17 |] twenty million people will have been infected by 18 | the year 2000. "Heterosexual transmission of the 19 | disease is expected to rise substantially in 20 | industrialized countries", said Michael Merson, 21 director of the organization's Global Program on 22 | AIDS. 23 ; If there's to be a spring of hope in the © 24 | AIDS epidemic, the Government must continue to 25 | fund existing multidisciplinary, effective health ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 “24 25 89 care services for people living with AIDS. There must also be community funding for community-based organizations and consortiums. Funding can no longer be on a year-to-year basis. Permanent funding is desperately needed. As the AIDS epidemic continues to escalate in the United States and shifts from gay men to heterosexuals and newborns, there is a critical need for programs to be in place ona permanent basis. REV. ALLEN: Barbara, you have one minute. MS. ARANDA-NARANJO: I think 1 would like to just shift to some of the observations in that we have made as multidisciplinary team working with their families, their children in South Texas. Drug abuse is one of the primary causes of AIDS in families. Maternal illnesses affects the health care of the child. Families with AIDS are primarily from the lower socioeconomic minority population. These families lack a number of basic resources. Housing, food, transportation, employment. These needs must often be met simultaneously with their medical ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 90 needs. Rural area physicians and other health care workers lack familiarity with care of AIDS patients. Families in rural South Texas often must travel six to ten hours to clinic visits in San Antonio. If you can imagine taking your child From Boston to New York for a clinic visit, that's about what it comes out. Families need clinics where both families and children can be seen at the same clinic visit and as parents become disabled by the HIV virus. So, the tenacity of medical associations, social problem family requires a multidisciplinary pyschosocial and community networking. And in closing, as we move into the next decade of AIDS epidemic, coordinating multidisciplinary care is a must have. Thank you. REV. ALLEN: Thank you. Thank you for being sensitive to the time. And, Bob, you arrived late and early. I tell you we are having six minutes of testimony and then -- we're going to have an entire panel obviously speak, and then we'll come back for dialogue. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 91 © 1 MR. DICKSON: I apologize for being 2 | late. I was delayed somewhat. i'm sure that the 3 | panel has had more than adequate testimony about 4 | the incidence of AIDS and the problems that are in 5 | that. 6 What I want to talk to you about is the 7 | State of Texas' response from a standpoint of 8 | alcohol and drug abuse, what the Texas Legislature 9 | has directed us to do and what the response of the 10 | -- 11 REV. ALLEN: Excuse me, Bob. We're @ 12 | going to try to turn up the mic a little and you 13 | need to really get close if you can. 14 MR. DICKSON: Okay. How's that? 15 REV. ALLEN: Yes. 16 MR. DICKSON: The last session of 17 | the Texas Legislature which ended last summer, the 18 | state -~ the 71st Legislature shaped our role in 19 | responding to the AIDS problem from two ways: 20 | One‘s through their appropriate sanction in which 21 | they directed that a statewide HIV plan be adopted 22 |} and asked the Texas Commission on Alcohol and Drug 23 |; Abuse be the legislative agency to put the plan © 24 | together. I have a draft of the plans with nme 25 | which I'11 leave with you. I'l] talk about that ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 92 and make a couple of comments about it and then leave it with you for yourself to review. And then they passed a Bill 959 which directs that TCADA, which is our agency, ensure that licensed and funded facilities provide HIV education for staff and clients. Also, it required the prevention of referral to AIV counseling and testing. Specific rules to implement these will be adopted in September 1990. HIV education is a part of the current standards of our licensure standards and our licensure department is implementing the provision for referral of HIV counseling and testing under the requirement for medical services. An additional requirement we have placed on our funding contractors is that they provide HIV assessment on every individual who enters the progran. I would like to elaborate that our agency provides treatment services for what we call medically-indigent clients, those that don't have insurance, don't have the money to purchase their own services. We license all treatment facilities, however, both public and private. We use federal funds in the following ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 93 ways: We use some of them for TCADA Staff, one coordinator, four trainers, one administrative tech. And their primary duties are for training and funding all substance abuse programs and program management of special HIV initiatives. We have funded one counseling and testing outreach program and we fund these jointly with the Texas Department of Health. We have worked closely with TDH on all substance abuse/HIV issues and we provide frequent services for IV drug users and other substance users at risk of HIV. We help put together the State Plan, as I mentioned earlier, that’s required by the Legislature. It has been completed and submitted to the Legislative Board this past March and is currently in its final printing. The Plan utilizes several different agencies, each of which has some responsibility in seeing clients that may have AIDS or be subject to having AIDS. Besides our own agency, the Texas Department of Corrections, the Bureau of Pardons and Paroles, Texas Adult Probation Commission, Texas Department of Mental Health and Mental Retardation and several others. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 94 And this Plan, which you can read at your leisure, takes into consideration the education outreach needs and what the current activities are, what the ultimate needs are and the goals, objectives. Also then takes into account the AIDS counseling and testing, what those current activities are, what the ultimate needs are and what the goals and objectives are for each one of these agencies affected. REV. ALLEN: Bob, you have one more minute. MR. DICKSON: Let me go ahead and point out that in surveys that we have done for the State, we find that thirty-six percent of male inmates have used needles to inject drugs and twenty-two percent did so in the last thirty days before being incarcerated. Of needle-using inmates in TDC, only about sixty-three percent rated their risk of becoming infected with AIDS as very low or none; and this is really a startling bit of information. Of inmates sharing needles within thirty Gays of last incarceration, forty-nine percent rated their risk as either very low or none. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 95 About fourteen percent of the Texas youth in Texas Youth Commission have used needles to inject drugs and five percent did so their last thirty days before being incarcerated. Among the TCADA clients, ninety-six percent of heroin addicts, seventy-seven percent of amphetamine abusers, and thirty-five percent of cocaine addicts reported needle use, placing them at risk of spreading the virus. There's a lot of other good data here. Our research department has put together several documents that I'm leaving with you for you to read at your leisure. I'll just read the titles to you very quickly. Texas Survey of Substance Abuse Among Adults, Substance Abuse Among Students and Texas Secondary Schools, Substance Abuse Among Texas Department of Corrections Inmates, and finally Substance Abuse Among Youths Entering the Texas Commission Facilities. This is all good information. Obviously, there's not time to go into here; but I'll be happy to try to answer questions about it. REV. ALLEN: Thank you very much. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 96 Mr. Waybourn. MR. WAYBOURN: As the author of Dallas is the Calcutta of the AIDS, I think I need to clarify that remark. As you know, that appeared in the New York Times. And immediately after that remark appeared, I wrote the New York Times a letter that I had unfairly characterized the citizens’ responses to this epidemic without any personal knowledge of this endeavor. And therefore, I want to apologize to the citizens of Calcutta as I believe my remarks have showed different remarks create different realities. I don't want to dazzle you with a bunch of specifics to justify why I was asked to speak to you today on social services needed by people affected with HIV/AIDS. But the organization I represent, the Dallas Gay Alliance, provides almost eighty percent of the direct services in Dallas that involve food, shelter, medical attention or financial assistance. We accomplish that on a budget of just over $1,000,000.00. We have received no significant government grants and nearly seventy percent of our funding comes in the form of small contributions of $20.00 or less making us a very ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 97 1 | strong grass roots organization. 2 We have, as I stated, learned that 3 | different experiences create different realities, 4 | and those who control the health care and social 5 | services system obviously don't have to use it or 6 |} else it would have already been changed. 7 Our experience in attempting to gain 8 | access to readily available health care and social 9 | services has been cheated, circumvented and. 10 misrepresented. / It has created a sobering reality; 11] that health care is indeed rationed in this | 12| country. | 13 | Only the rich can afford it. Only the 14! employed can attain it. Only the educated can | 15, exploit it. And those who need it are left : ‘ \ 16 without it. Subsequently, they die faster. We \ \, 17 \ have put a price on living longer, but no one : 18 Seally cared until AIDS came along. 19 Most of the indigent patients who depend 20 fon the services of Dallas" only public hospital 21 jare the second and third generational patients. 22 | They were born into that system and they will die 23 J;into it. They don’t know that many people can see 24 |] a private physician within hours if you have 25 | insurance or money. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 98 Not so with indigence. The same system that says you don't have to pay enslaves you to make you pay. Lengthy delays make you unemployable. A lack of preventative care guarantees your dependence, but then there's aiways welfare. AIDS did not create the difficulties with the public health care system in Texas. It only turned the lights on when nobody was home. And as a middle-class white male, I must say that I am ashamed that we have created such a system of fraud, waste, and abuse. We owe an apology to women, the elderly, the poor and people of color who have no alternative to health care. We have wasted billions of dollars and hundreds of thousands of lives. No where is the failure of the government more evident than in the AIDS Clinical Trials Group. There is none for adults in Texas. And that's just the beginning of the inequities of how poorly AIDS research and treatments are doing not just in Texas, but in the United States. Dallas’ VA Hospital couldn't for nine months get $20,000.00 to build a room to deliver aerosolized Pentamidine treatments as a ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 99 preventative for pneumocystis pneumonia. Yet, countless AIDS patients were given twenty-one day in-hospital Pentamidine treatments after they got pneumonia at an average cost of $10,000.00 each. This is insane. Seven years ago, a Texan, diagnosed with AIDS could expect to receive all the inpatient, outpatient and pharmaceutical benefits of state-supported public hospitals. Now you can only get into those public hospitals to die. In these seven years, all of the public hospitais in the eleven counties around Dallas and Fort Worth have closed except Parkland and John Peter Smith in Fort Worth. That means almost three million people are without publicly-financed health care. If you don't have insurance in Texas, and a large percentage don't, you’re going to die a quicker and more painful death. My organization, the Dallas Gay Alliance, had to go to court to get a court order to force Parkland to end its discriminatory policies against persons with HIV because it withheld readily available health care. Parkland was ordered to end its waiting list AZT and was ordered to deliver aerosolized Pentamidine as a ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 100 preventative for pneumonia. But now the situation’s only worse. Emergency rooms have merely become waiting rooms. Parkland's AIDS doctors see an average of sixty patients a day and yet they’re supposed to conduct research in this environment. New drugs are useless unless patients can get then. The Dallas Gay Alliance opened Nelson-Tebedo Clinic with a grant from the private American Foundation for AIDS Research. We have one full-time physician and three full-time nurses. Each week the NIH pays to fly scores of HIV-positive patients to its headquarters near Washington, D.C., ignoring locally-based physicians in our own CRI. In our own backyard, Parkland refuses to refer indigent AIDS patients to our clinical trial. Politics and medicine, as we have learned, are indeed strange bedfellows; but AIDS doesn't care about politics. The U.S. Public Health Service official in our city, who is charged with oversight and as liaison to our agency, can’t even find our offices. Dallas has a member serving on this ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 101 panel, yet never once has he inquired as to our program needs or objectives. The public health care system in our region of the country is a cesspool of bureaucratic entanglement, criminal negligence, backroom cronyism, incestuous nepotism and borders upon fraud to taxpayers. Image is still more important to Dallas than substance. The AIDS industry is alive and well in Dallas, while AIDS patients go begging for basic local services such as food, shelter and medicine. We see large encumbering and bloated staffs that look good to the nation on PBS'" AIDS Quarterly. We can build sixty thousand dollar toilets for the military, but AIDS patients can't even get pots to piss in. Two years ago, a blue-ribbon commission comprised of a broad cross-section of community leaders was formed to provide a comprehensive strategy for fighting AIDS in Dallas County. After an exhaustive six months of hearings and meetings, an extensive set of recommendations on how to deal with AIDS was released. REV. ALLEN: You have about one more minute. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 102 MR. WAYBOURN: It is particularly difficult now to comprehend how only one of those more than one hundred recommendations was ever adopted, and that was the appointment of yet another board of health. And to ensure its ineffectiveness, the county commissioners refused to vote it any enforcement powers, no budget appropriations and no staff. Dallas is number one in gonorrhea, number one in teenage pregnancy, one or two in childhood measles deaths. And we have a higher infant mortality rate than some third world countries. Yet, federal and local officials think nothing of wasting $550,000.00 on a useless point-in-time HIV seroprevalence survey, a dollar figure by the way that mirrors the entire city and county budget for AIDS. For years, Dallas County's sexually-transmitted disease prevention education efforts have been to corral persons with STDs, give them a lecture, a shot of the penicillin, and send them on their way. The problem with HIV is that by the time you come in, the lecture doesn't help anymore than a shot of penicillin. And the school system is just as ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 103 negligent. Despite surveys that show teenagers to be the next highest risk group, teachers in the Dallas Independent School District can't discuss condoms until students bring up the subject. If "Just Say No” doesn't work, then why are we withholding education that condemns teenagers to death? Dallas County's Health Department, is, as its director told me a couple of years ago -- REV. ALLEN: You need to go ahead and wrap it up. MR. WAYBOURN: The reality of AIDS requires us to be more pro-active not reactive. The model of using community-based organizations, many of them operated and funded by gay men and lesbians, to buy time in the AIDS crisis is now that time that has run out. We cannot sustain such rapid growth with such governmental neglect and political abuse. It is immoral and unethical to withhold readily available health care, treatment, education, research or social services to anyone and certainly, not because of inability to pay. I would like to give you three simple recommendations: Broaden research priorities, ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 104 support innovative clinical trials and expand access to health care and social services. This would not require an influx of millions of dollars. Just a commitment to spend those dollars wisely and that includes working directly with the one group most responsible: Community-based activists and their organizations. I would submit this to those of you in power. You cannot float half a ship. Thank you. REV. ALLEN: Are there any questions? MR. GOLDMAN: I'd like my question to Barbara. Would you let us know how you handle the case management with your multidisciplinary care teams particularly in the kind of areas you're talking about where people have to travel many hours and the community resources that have to be dealt with may be very varied on home community. MS. ARANDA-NARANJO: I think first off we are a demonstrating project funded by the Texas Department of Health and Human Services under. the auspice of Maternal Child Health Care for South Texas. And therefore, we do not turn anyone away when they were coming to San Antonio ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 105 to the County Health System where we are situated in our clinics. We work very closely with the Valley AIDS Council in South Texas in coordinating the case management and care because we cannot do the day-to-day care that the HIV-infected child and his parents needs. So, we try to find a physician -- sometimes we do -- who would see the day-to-day care medically and we use the case management system from the Valley AIDS Council to network the case management. When they come to San Antonio, it is a struggle of case management over miles of territory and it makes it very difficult because many of the physicians are not familiar with the care for these children and many times have to be flown. And people use their total resources for their other members of their family in trying to have the child get the care he needs. It’s coordination across miles. MR. GOLDMAN: Tim, I didn't mean not direct it to you. I was just wondering if there’s any better way of coordinating the case management in the kinds of areas that you're ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 106 dealing with and what recommendations you have. MR. PANZER: I think it takes more people to make a home visit. It may require an hour or two hours drive to see. It is more labor expensive. We have been fortunate with the pediatric cases to be able to work with the demonstrating project which is basically the same thing. They hold monthly clinics which can do a lot of the more costly care for these patients. However, those reserves are not available to the adults; and that’s been a problen. Case management in our area had done a lot over the telephone. And so, we have high phone costs. Almost every town where our clients are is a long-distance call. MS. ARANDA-NARANJO: We do send a team of new doctors, pyschologists once every two months to do a routine visit on the children. And many of them are hemophiliacs and there is a center at one of the hospitals, private hospitals where the hemophiliac children can come to see and and they try to make the parents part of their annual visits for the hemophiliac. We do just a lot of footwork. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 107 © 1 And each individual family is so 2 |different based on is the parent infected or one 3 | parent is infected, are the other children 4 | infected because I think the other thing you have 5 | to look at, too, quickly, is the culture. Have 6 | one family have enough money from donations. 7 | Well, not only did the parents come, but the other 8 | kids came and the grandmother came and aunt came 9 [and the sister came. We're like would you -- I 10 | think that's another thing to keep in mind. Each 11 individual family is so different. @ 12 MR. PANZER: I just-wanted to 13 | mention one other thing in terms of case 14 | management. We have in the past relied very 15 |; heavily on our buddy system in which we try to 16 |} decide a volunteer who lives in the same area as 17 | the client and they then are kind of extended arms 18 |as the case management system. That's going to 19 | reach a capacity or it already has. 20 We need to start paying for services in 21 | home care. That will be an extension of case 22 | management and report back to a case manager on 23 | any changes in the client's status. There is just @ 24 |-- especially in rural communities and very poor 25 j communities, there are few people who have the ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 108 time and resources to devote to that extent of care for people who may be dying. REV. ALLEN: Any questions? Larry. MR. KESSLER: Mr. Dickson, I have a number of questions. We haven't heard a lot about the state of those infected in Texas due to addiction, and I was wondering if you had any numbers or estimates of the rate of infection and how many people are considered to be drug addicts in the state or addicted. MR. DICKSON: Yes, sir. I wish that I had had a little more notice about this hearing so I could prepare a little better. I have volumes and -- REV. ALLEN: You need to speak in the mic, Bob. MR. DICKSON: About the incident of HIV among drug abusers in Texas and we have a number of concerns about some of the strengths and labor and hope you’1ll be able to take some of these concerns back to the Federal Government. One of the big concerns we have is the limitation of the HIV set aside to needle users and we’re finding that crack abusers are high-risk ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 109 for AIDS, high-risk among all abusing -- drug users an@ alcohol abusing types. And we need to be relieved of this, set aside for needles in your planning and our allocation of treatment dollars around the state. One of the things that I certainly want to bring to your attention is that currently our last allocation of funds which occurred about two weeks ago only took care of seventeen percent of the need for treatment in the State of Texas among the medically-indigent people. It would take a hundred sixty-nine million new dollars to take care of the present need in Texas for alcohol and drug abusers. About thirty-six to thirty-seven percent of these people are alcohol abusers and the rest are drug abusers. We consider all of those at high risk for HIV. MR. KESSLER: What is your waiting time now for treatment? MR. DICKSON: On any particular day, we have about sixteen, fifteen, sixteen people on the waiting list for treatment. And this -- you know, the length of time varies depending on the type of treatment, whether it's ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 nN 110 @ 1 |} ocutpatient or what. But I can safely say three to 2 | four weeks is an average waiting period. 3 MR. KESSLER: Are clean needles 4 | available across the counties? 5 MR. DICKSON: Yes, they are. We 6 | don't make them available. They are. 7 MR. PANZER: Through whom are they 8 | available? 9 MR. DICKSON: They're not 10 | controlled in Texas. 11 MR. DALTON: You mean by that that © 12 | there is no paraphernalia law and no description? 13 MR. DICKSON: Paraphernalia laws, 14 | but they don’t control syringes. Anyone can walk 15 | in a drug store and buy a syringe. 16 MR. DALTON: And needles, too? 17 MR. DICKSON: Yes. 18 MR. KESSLER: Is there any 19 | education campaign about not sharing needles and 20 | be choosy and so on that the state may be 21 | conducting? 22 MR. DICKSON: Yes, sir. We are 23 | doing that with all of our treatment programs, as @ 24 I mentioned in my comments. And we have one 25 | program where we do outreach in the community in ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 111 the high-risk community. And one of the key elements of this is education by not sharing needles and by cleaning needles with Chlorox and with anything else, trying to get them involved in treatment programs. MR. KESSLER: Is there any actual description of bleach? MR. DICKSON: No, sir. That was forbidden by our government. MR. KESSLER: What about condoms? MR. DICKSON: No. MR. KESSLER: That also was forbidden. MR. DICKSON: Yes, sir. MR. KESSLER: Is your department waging a campaign to change the mind of legislators about those issues? MR. DICKSON: I wouldn't go call it a campaign, no. MR. KESSLER: I didn't hear you. MR. DICKSON: I would not call ita campaign. We're using persuasion, but I think campaign is the wrong way to go about it. MR. DALTON: Sir, to follow up. I was struck, as you no doubt intended us to be, by ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 112 the figures that you gave us at the end of your testimony with respect to those people entering your system who had used a needle within three days of admission and in their own self-assessment of their risk for HIV infection. I guess I want to ask what you're going to do about that. MR. DICKSON: We are entering a joint planning project with the criminal justice system to bring an integrated treatment plan to Texas Legislature for funding for a number of reasons. One is just over recidivism of people re-entering the Texas Criminal Justice System. And we feel that a great deal of that recidivism is underlinked by drug abuse and alcohol abuse. Whether it’s caused by that, may be problematical; but it certainly is present among about eighty percent of this clientele. The states that have been successful in the use of recidivism are the ones that have integrated a treatment system into the prison -- pervasive prison and parole experience. There’s about less than a dozen of our states that can claim some success in that. We're studying that and we're going to ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 113 take what we feel will be applicable in Texas and ask the Texas Legislature to fund a very ambitious program to make treatment available within the system as an integral part of the prison experience rather than that later on where they have the time and the money. The Texas Legislature has only recently awakened to the great need for alcohol and drug abuse treatment among its citizens. So, while I have to tell you that we're very far behind, I must also at the same time tell you that the Texas Legislature is rushing to catch up with this now. And we have a great deal of interest among the legislators to come up with such a plan as I've just described because we feel like that if we treat the alcohol and drug abuse among the inmates, among the people in the criminal justice system, which will include, of course, HIV education and that type of thing, we feel we're going to have a positive impact on the recidivisn, we're going to have a positive impact on reducing alcohol and drug abuse among these people and that's going to help reduce the spread of AIDS. MR. DALTON: Okay. REV. ALLEN: Any other questions? ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 i2 13 14 15 16 17 18 19 20 21 22 23 24 25 114 MR. KESSLER: Well, I would only suggest to Mr. Dickson that the -- I applaud your efforts to work with those in prisons, but that’s a small number of people who are sharing needles. And it may be stereotyping needle users in the community to focus exclusively on those in prison and also doing a service in terms of slowing the spread of AIDS. National statistics, you know, are showing that the most drug users and needle sharers in the workplace are not necessarily having a record or criminal record and are not in prison. That's the tip of the iceberg. And we need to work with that group, but we also need to work with those who are considered model citizens who are subsequently also out there sharing needles and having unsafe sex and may be infected. MR. DICKSON: Well, we certainly agree with that. And the criminal justice initiative is not the only initiative that we have going. As I pointed out earlier in our needs assessment, we’ve set a dollar figure on what it would take to satisfy those needs. And we are pushing to get that -- to get to a hundred percent ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 115 of certainly the medical it takes. Along with this, we've required in all of our treatment programs education about the HIV and spread of AIDS and how to practice safe sex and how to avoid this sort of thing and that type of thing. We're -- most of our budget currently is dedicated to prevention and intervention of treatment among the general public and not toward the criminal justice system. Texas has -- in addition to what we need to be doing in the community and are trying to do, we have three hundred fifty thousand people approximately on probation in Texas. And that’s an enormous amount cf people. We have forty thousand in prison and another forty some odd thousand on parole. So, that by itself is a big chore just to provide services for that type of operation; but we’re not ignoring the general population. No. MR. KESSLER: Do you have any ideas how many of the forty thousand are infected and how many have been diagnosed with AIDS? MR. DICKSON: No, sir, I don't. REV. ALLEN: Do you have a question along that line? I have a question about the ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 id 1 12 13 14 15 16 17 18 19 20 21 22 23 24 25 116 confidentiality issues of individuals that are HIV-infected. I know you're not the Texas Department of Corrections, but I know the records follow individuals and there's a lot of difficulty there. Also in treatment centers. How do you protect confidentiality in your area? MR. DICKSON: We -- of course, confidentiality is a big issue among alcohol and drug abuse treatment facilities. Our standards speak to that very strongly. Whether or not a client has AIDS is treated with the same kind of protection of confidentiality as their identity as far as alcohol and drug abuse is concerned. And within the program when we -- to give you an example of our efforts that we've gone to protect this, when we enter you into an agreement with the Texas Department of Health to provide the outreach services within some of our treatment programs, CJ -- the Center for Disease Control, CDC, had a requirement that in our treatment programs one person, one counselor be trained in AIDS and be identified as the AIDS counselor. And what we were finding was that people who went to see -- nobody would go see that counselor. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 117 And so, we prevailed on the Department of Health and CDC to allow us to make each one of the counselors of these programs an AIDS counselor and train them all so that no one would know, have any idea whether it be counseling about alcohol and drug abuse or counseling about AIDS. REV. ALLEN: One of the difficulties to follow up on that before we leave this subject is the problem with halfway houses -- and moving out of counselors, but moving along the spectrum of health and recovery. The difficulties of the HIV status following and sometimes haunting the individual is a deep concern of mine. Also that some halfway houses are rejecting individuals that are HIV-positive because it is on their probation and so forth. It seems to be a catch-22 if you're trying to provide services in the city where a halfway house will not respond to the individual. Is there some -- we talked about this on the legislative task force and so forth. And I wondered if there's been any remedies to perhaps restrictions on money or licensing and so forth that would require halfway houses to do what ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 @ 12 | 13 14 15 16 17 18 19 20 21 22 23 25 118 they're supposed to do? MR. DICKSON: Our standards -- we license all treatment facilities in Texas, GI patients, halfway houses, whatever, be it public or private. And our standards protect the health, safety, civil rights and protection from abuse. That’s the core standards and those are not -- you can't get away with it. In other words, if there's a violation of those, there’s no aid available because we feel those are most important. And civil rights is one of those same as it is protecting our standards. And I think what you're talking about is a civil rights’ issue. If the program is available for the treatment of someone who has alcohol and drug abuse, then it certainly is available even if that person has AIDS. That's not to say that there's not some abuse of that. We don't operate, directly operate treatment programs. We contract for it. All of our services are private, not-for-profit organizations. REV. ALLER} But out of that contract, can you require them to do their job? MR. DICKSON: Yes. We require them ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 119 to help and train in this. And I couldn't answer you right now whether we require them to not turn someone away for AIDS. Obviously, any treatment facility has to have the capability to refer someone on if they don't have the capacity to treat that person. And we try to give our people as much laxity as we can in that, but that's something that I'd be happy to look into. REV. ALLEN: I would appreciate that because it is very concerning. Individuals that are in the midst of desire and recovery and working at it find a system that locks them out. They lock them in to the prison or lock them out of the care and it doesn't make a lot of sense to me. And I know that, you know, you have a @ifficult job on other fronts; but that is something that this Commission we are very sensitive to and we will be addressing prisons and seeing the connection thereof. So, I just wanted to share dialogue a little about what's happening in Texas. Thank you, Bob. MS. DIAZ: I just have a real quick question for William. What percent of the clients ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 120 that are served by your agency have both substance use problems and are also seeking services as gay men at your agency and also about what percent would you say are persons of color? MR. WAYBOURN: If you can bear with me just one minute, I could give you the exact figures because Mr. Thomas is our Executive Director and has our exact figures. If John could get those figures. I would like to make one other clarification that came up on an earlier panel so that you and Mr. Dalton or whatever won't leave here with the wrong impression. We've worked quite well with the Dallas Urban League and indeed, they have attempted to be a subcontractor to then. The problem with Mrs. Carr when she called was not only who she was, but more familiar working without the commons and referring them. And so, we don't give out figures over the phone until we know what use of the figures will be. And also, we have attempted -- we believe in the right of self-determination. And we have attempted to help several African Americans and Spanish organizations get funded and ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 121 operate on their own. We don't break out the IV drug abusers, but we did have twenty point three percent African American, six point eight percent Hispanic and four point four eight percent women. And we have a caseload this month of five hundred and sixty-seven clients. MS. DIAZ: HIV? MR. WAYBOURN: Right. MR. PANZER: I wanted to make a quick comment on the discussion that happened in the earlier panel about competing for funding. We don't have that luxury in a rural area, and I think that -- well, I know the minority of our staff and we don't even have a white male on our board. So, I think that especially in rural areas in small towns, funding that encourages the fragmentation of services is very detrimental. And I think that really the Commission should think about that especially in terms of small towns and rural areas. And maybe Barbara can echo that; I don't know. But we just don’t have that luxury. MR. ARANDA-NARANJO: I think that ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 122 children have made us look more that AIDS has always been a family disease rather than it was a gay homosexual or whatever. And it's always been a family disease. And as the children are now the effects of that, the tenacity of the need is going to make you reach down. That's the only way you'll be able to cover the needs that these families have, both medical and psychosocial. You're going to look out to that consortium that’s going to give you the impetus to put your own agendas aside because it’s going to take a community consortium to deal in the next decade as we see total families. We have mother, father, two or three children infected in San Antonio where you probably have the lowest numbers in the country. You can look up to New York and New Jersey and California. I think it’s going to be required to put aside your agendas. MR. PANZER: The services need to be client-centered. MS. ARANDA-NARANJO: And if you don’t get them, they'll still come. And move you forward. MR. DALTON: So I understand you, ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 123 are you saying that you think it's inappropriate for funding agencies to specifically target, for example, IV drug users with their finding or women? MR. PANZER: No, not at all; but I think that the impact that -- that narrowly -- that's why I was talking about flexibility of funding. Service funding that narrowly focuses on the small target populations, the impact on services in a rural and small-town community needs to be looked at. There will be organizations that will go after that funding that may qualify and then you start to have territoriality and fragmentation services and it becomes detrimental to the overall services in the passive community. We just don't have that luxury in a small rural -- I don't know if I've clarified that. There does need to be targeted funding for people, particularly groups at risk; but I think that some funding tends to fragment services. And the impact of that needs to be considered in the design of the programs. MR. DALTON: Thank you. REV. ALLEN: I think we're ready ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 124 for a break. DR. OSBORN: I just wanted to make one last comment. I wanted to thank William Waybourn for a very succinct and very usable definition of the crisis in health care which I hope you won't mind if I quote if I wrote it down correctly. You were saying that only the rich can afford it, only the employed can obtain it and only the educated can exploit it. I think that's a wonderfFully-put phrase which I certainly plan to quote. So, thank you for that. The other comment I feel inspired to make and you hit a guilty nerve in me. So, I want to apoligize here in Dallas to Ann Arbor, Michigan, for not being able to spend as much time as I would like in my own community. And by the same token, I want to thank Dallas for lending us the talents of Reverend Allen and the National Commission's work. I think most of us working side-by-side in the distress of this epidemic can share one thing if nothing else and that is we all wish we could do more than we are able to do in any given day. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 125 And I -- to Ann Arbor, Michigan, I hope they understand why I'm in Dallas and I hope you understand why we are sometimes off somewhere else when we'd like to be everywhere. REV. ALLEN: Well, we are right on time and we're going to have a break for fifteen minutes. (Short recess. ) REV. ALLEN: We're going to go ahead and begin even if some of the Commissioners are not here. I'd like to go ahead and introduce the next panel. Janet Voorhees from the Mexico HIV Services Planning Grant Director; Donna Antoine-Perkins, HIV Services Planning Project, Mississippi State Department of Health; Rebecca Lomax, Associated Catholic Charities of New Orleans, Louisiana. We will start with Janet and then Donna and then Rebecca. MS. VOORHEES: Mr. Chairperson, Dr. Osborn and Members of the Commission, thank you for asking me to be here to share my ideas. My name is Janet Voorhees. I have been doing AIDS service work for the last five years. I started in inner-city Baltimore, but now I'm from rural New Mexico and will be giving you my perspective ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 126 in New Mexico today. I believe that the major systemic and economic barriers in providing comprehensive and compassionate HIV care, especially in the rural states, fall in seven different categories. I will try and give you a few personal examples as I go along. Health care professionals and nonprofessionals who are undereducated and undertrained and undersupported about the HIV epidemic in general and about how to provide specific HIV-related care and about their role in providing that care. Lack of insurance or underinsurance among people with HIV disease. The lack of creative coordination and linkages of services among care providers in institutions. What I mean by that, I'll give you an example. In New Mexico right now, we're trying to invite private physicians who don't want to be identified in their offices as AIDS docs to come to the public health clinics and reimburse them through the new legislative appropriation. Also, to do private sort of intimate partnerships. I recall aman, who did not qualify for ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 | 127 © 1 | hospice care because he didn’t have a primary care 2 | giver, who I worked a deal out with. He had no 3 | home. We were able to a pay for him to go toa 4 | motel. And the night clerk, if I guaranteed to 5 | give him $5.00 a night and some He-man Chewing 6 | Tobacco and a cup of coffee in the morning, would 7 | look out for my patient and call me at night. 8 I see a lack of long-term chronic care 9 | services, facilities and reimbursement 10 | mechanisms. I see different standards of 11 fjeligibility among medical and social service 12 | programs to people who are disabled and a big lack 13 | of substance abuse, alcoholism and mental health 14 | services, especially for poor people, especially 15 |} for people in prison. 16 In our entire state, there are six 17 | public beds for people with alcoholism and 18 | substance abuse problems period. I'm also 19 | reminded -- I went to visit a friend, someone I’ve 20 | known who's been HIV-positive for about four years 21 |] now in the detention center recently. He told me 22 j; that he had last been there eight months ago and 23 had left his words there. He engraved his © 24 | initials on them. And when he came back eight 25 | months laters, the same ones were there. There's ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 128 no education in those services in that detention center for HIV-positive people. Also, I see a problem in the vast distances between rural communities and primary care services. And I think with the exception of that barrier that all of the barriers that I see prevade our entire health care system. And I use that in quotes and are only exacerbated by HIV disease. I recently heard a spokesperson from the Centers for Disease Control say that the future for the HIV epidemic is now in the rural states. And as a result of conducting statewide HIV Needs Assessment and planning for HIV services this year in New Mexico, I can assure you that the future of the HIV epidemic has already arrived in our state. We're suffering through barriers of perceptions, perceptions about where we are in the epidemic and where we'’re going. Although we still qualify by definition as a low-incidence state, in May of this year, the New Mexico Health and Environment Department held a special press conference to announce that it is estimated that twenty-five hundred to three thousand New Mexicans ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 BT 129 © 1 are HIV-infected; and while the numbers of persons 2 {diagnosed in New Mexico communities is lower than 3 |] that in larger cities, the rate per capita of AIDS 4 /in Albuquerque is higher in Pittsburgh and > | Detroit. The rate in Santa Fe exceeds the rates 6 | in Los Angeles, Dallas and Washington, D.C. 7 These projections also informed us that 8 | by 1992, eight hundred people will have been 9 | diagnosed with AIDS in New Mexico, more than twice 10 | as many people in the next year and a half as 11 [| we’ve had since we started counting in 1981. @ 12 We have the highest percentage of -- I 13 | use this advisedly -- minorities in our state. 14 | Although it has a rich cultural diversity of 15 | Native Americans, Hispanics and Anglos, it's an 16 {economically and very poor state. Per capita 17 income is in the lowest ten percent in the United 18 | States. And our Medicaid reimbursement rate is 19 | ranked fourth lowest in the country. 20 Physicians are currently being 21 | reimbursed under the 1978 pay schedule. It means 22 that they are getting fifty-five cents on every 23 | dollar of care that they deliver. So, many © | 24 | private physicians and health care institutions 25 | refuse to care for Medicaid patients and thus use ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 130 this as a straight-faced bonafide rationale for not caring for HIV patients. Due to the abundance of small employers and self-employed individuals in our state, a high percentage of the population has no health insurance. It's estimated that more than twenty-five percent of our population compared to fifteen percent nationally is uninsured. To shed some light on that problem in particular, I want to give you a few statistics From our University of New Mexico Hospital HIV Clinic. Thirty-six new patients were admitted HIV-positive symptomatic from January to April of ‘90. Fifteen of those were indigent, ten are self-pay patients. That means that seventy of the new patients are uninsured. Self-pay generally means little pay or no pay in our systen. Of the remaining eleven patients, four were qualified for Medicaid, one receives Medicare and six have private insurance. The self-pay folks are charged approximately $500.00 for the initial medical visit. The basic bare bones of what their year of care can look like will amount to about $10,000.00 a year including lab work, Pentamidine prophylaxis, AZT and the physician’s ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 131 fee. If they go into the hospital once, an average hospitalization of about $6,300.00 which comes to §16,300.00. I'm not sure anyone I know even the middle-income people can make out-of-pocket expenses of $16,300.00. I also wanted to make two points: One is that in our Planning Project this year, we discovered that New Mexico State's Correctional System has signed a contract with an insurance carrier that specifically excludes any kind of services with symptomatic HIV disease. When I asked the Medical Director what would happen to people when they developed symptoms or became seriously ill, he answered, they will leave prison under a compassionate release provision. It is mind-bogglig to consider the economic, systemic and social barriers to providing care and to receiving that care with that tragic scenario. And then finally, I think in our attempt as health care professionals to serve the expanding and changing population of HIV issues, we must face the possibilities that we ourselves may be the barriers. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 132 The barriers are our delusions about the HIV epidemic about who it is we're going to be serving and who we are in it; our limited expertise and care for people who have problems with drug abuse, alcoholism or who are chronically mentally ill; our conscious and unconscious prejudices about ethnicity, race, gender, and sexual preference; and our professional and institutional isolation and arrogance is a big problem for us. Finally, our naive grandiosity in believing that our professional training has prepared us for that panoply of human suffering. I feel that we must continue to support ourselves, our friends and our loved ones and our colleagues to cultivate in continuing to allow the HIV epidemic to open our hearts and our minds. Thank you. REV. ALLEN: Donna. MS. ANTOINE-PERKINS: Good morning, Reverend Allen, Dr. Osborn, Ms. Byrnes, an@ members of the Commission. In the great state of Mississippi, the needs. are high and resources are low for combatting the HIV infection. The low economic and educational levels in Mississippi in ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 134 socioeconomic status of the state, an ever-widening gap between the health needs in terms of HIV and existing resources to meet these needs becomes glaringly visible. During the past decade, the transmission of the human immunodeficiency virus and the development of related illnesses has emerged as a serious public health crisis affecting Mississippi residents. For the period May 1989 through April 1990, Mississippi has had a case rate of seven point three per one hundred thousand population placing the state twenty-fifth among states for AIDS case rates. Through June 1990, nine hundred and eight cases of HIV infection have been reported to the Mississippi Department of health. Of these nine hundred and eight of HIV infection, one hundred and thirty-two has subsequently been reported to the department as AIDS cases. AIDS in Mississippi parallels that ona national scale. The majority of Mississippi cases has occurred in adults ages twenty to forty-nine years... Although all races have been affected, trends both nationally and statewide indicate increases in infection rates among minority ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 1i 12 13 14 15 16 17 18 19 20 21 22 23 24 25 135 populations. National estimates indicate there are fifty to one hundred persons infected with the virus for every AIDS case currently reported. By applying the national estimates to Mississippi, an estimated pool of approximately five thousand to ten thousand individuals infected with the virus may be established. The expected trend of the epidemic in Mississippi over the next three years is for infection rates to move sharply upward. As many as two hundred and twenty to two hundred and thirty new cases in 1990, two hundred and sixty new cases in 1991. And by the end of 1992, three hundred and twenty-five new cases are expected. Additionally, the percent of cases among nonwhites has been increasing steadily and is expected to continue in this trend. Mississippi currently has two residential facilities for persons living with AIDS. One is in the city of Jackson which is the Sandifer House and the other is located on the Mississippi Gulf Coast. These are the two most urban areas of the state and the two with the highest incidence of infection. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 136 The Mississippi PWA/HIV Coalition operates these homes and is now negotiating to purchase three more, one of which will be located in North Mississippi. The Mississippi PWA/HIV Coalition is also assisting four clients per month with any of the following: Rent, mortgage, utilities, etc. It has been stated that many more individuals are in need of assistance; but due to inadequate funding, they are unable to provide this service for the numbers in need of it. It is projected that these figures will increase at much the same rate as for temporary shelter. According to officials at the Mississippi Department of Mental Health, programs funded by the state indicate that there are approximately three hundred fifty-seven residential primary treatment beds, a hundred fifty-seven transitional treatment beds, forty beds at the Mississippi State Hospital and twenty-five at the East Mississippi State Hospital. HIV counseling and testing is not being conducted at any of these facilities. Resources are not available to provide this service. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 137 However, alcohol and drug abuse officials state that on occasion it has come to their attention unofficially that they are treating HIV-infected clients in their system. Currently in the state, there are eleven pediatric or medically-fragile foster care beds. These beds are for children determined to be medically-fragile. There are no children with AIDS occupying these beds. However, the Department has recently prepared a proposal to increase the number of medically-fragile beds by six which will include HIV-infected or AIDS children. Medically-fragile as defined in Mississippi is one who requires daily care in addition to routine child care, that is approximately equivalent to care in a nursing home, skilled nursing or SSI eligible or enrolled. For example, requiring frequent hospitalizations or is technologically-dependent. Due to the progressive deterioration of HIV-infected or AIDS mother’s health, they may not be able to actively participate in the care giving of their children. Therefor, other means of support are going to be needed. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 1] 12 13 14 15 16 17 18 19 20 21 22 23 24 25 138 The pediatric medically-fragile program is not, given its present participating numbers, going to meet the needs for the numbers of babies projected over the next five years. Fven with the possibility of obtaining the six beds being proposed, there will still be a tremendous shortfall on beds needed to care for these children. Our state department of health currently provides AZT to persons with HIV infection providing they have an absolute CD4 cell count of —_ five hundred or less. | The department currently has twenty-three Serer AZT now and thirty-six on the list. Last week, we received word that continued additions to the waiting list may no longer be possible. I don’t know what’s worse; to tell someone they are number twenty-seven on a waiting list of thirty-six or to tell them we are no longer accepting names for the waiting list. Also, many of these individuals know that there are a few ways to move up on this waiting list. Either someone has qualified for medical assistance or someone has died. The program, however, does not cover the cost of ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 139 equipment necessary to administer some of the medications. Aside from the coverage provided by Medicaid, the State of Mississippi currently provides for no other methods of payment for treatment and services for the HIV-infected AIDS population. We are doing what we can, given the resources we have; however, we cannot continue to operate on limited financing and expect to meet the needs of our citizens. Our state and federal governments must become more responsive financially if we are to realistically battle and defeat this monster called HIV. Thank you. REV. ALLEN: Rebecca. MS. LOMAX: Good morning, Ladies and Gentlemen of the Commission. I want to thank you for the opportunity of coming here to this hearing today. I have met some of you privately, but I find you as a collective body somewhat intimidating. I’d like to say first of all that Il don't pretend to be an AIDS expert, but I think I have a very good grasp of the political and economic issues that impede the delivery of a ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 140 continuum of care to people living with AIDS in my state, Louisiana, New Orleans. I hesitate to talk about political issues because politicians tend to be a little testy when I do, but you have to understand the politics of my state and my city. Indeed, probably the politics of the south to understand the task that we face. The expectation in some locations is that groups will work together for the common good. The expectation in Louisiana is that there wili be contentiousness, there will be factionalism, there will be racism, there will be sexism and there will be lots of secret meetings. Our legislature just passed the most restrictive anti-abortion bill in the nation. In opposing an amendment which would allow for abortion in case of incest, a state representative said publicly and I quote, “Inbreeding is how we get championship race horses”. Need I state more about the enlightened politics of my state? Louisiana has created a classic catch-22 system with its Medicaid bill. A person who is applying for benefits must apply for Supplemental Security Income -- that's welfare -- and Social ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 141 Security disability at the same time. Any person who receives SSI also receives Medicaid health care coverage. The maximum SSI paid in Louisiana is $386.00 per month. The state allows an income from all sources of $20.00 a month over SSI. That means that a person who has a total income of $406.00 or less retains Medicaid coverage. A person with a total income of $407.00 loses their Medicaid coverage. Most people who have been employed and paid into the Social Security system will receive Social Security disability benefits in excess of the four hundred and six dollar limit. It is ironic that those people who have never paid into the Social Security system fare better than those who have. It is also ironic that our state with its very low SSI limits is actually putting people into the already overburdened public health care system who could continue to receive health care in the private sector with Medicaid coverage. At any given point in time, only about twenty percent of people living with AIDS in Louisiana are covered by Medicaid. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214) 520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 142 To the best of my knowledge, we have not had a single person admitted to a nursing home. We are either told that the beds are full or that the staff lacks the expertise to deal with these patients. We believe that Louisiana's Medicaid reimbursement rate of $47.40 per day for skilled nursing care has a lot to do with these refusals. Those people who need this level of care often must utilize expensive hospital beds because they have go no place else to go. Housing is a critical need in New Orleans. Our housing stock is generally expensive and substandard. Project Lazarus, owned by the Archdiocese of New Orleans, is our city’s only dedicated house for people living with AIDS. It was expanded last year from seven to thirteen beds with the help of a renovation project grant from the Health Resources and Services Administration. We need the same range of housing options for people living with AIDS as we do for | any group of people who may experience i if deteriorating health. Apartments that can accommodate walkers, wheelchairs, congregate living, group homes. And it needs to be : subsidized because of our limited income. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 143 We need home care and personal care attendant services to help people stay in their homes. And we need the flexibility to allow people to move back and forth between those arrangements as their needs change. We have not been successful in working with our local housing authority which is considered and I quote troubled by RUD. And HUD is having its own problems. They've had two career HUD officials resign rather than move to New Orleans. There's something wrong with what we've been doing with preventive education and how we've been disseminating that information about HIV through the media, and I don't know how to fix it. We're seeing the changing face of AIDS in Louisiana. More minorities, more drug abusers, their children, increased numbers in rural areas. And we're providing in the words of the grant-makers culturally-sensitive AIDS education provided by minority leaders. But how effective have we been when ten years into the epidemic, we are still answering questions about toilet seats and mosquitos. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 144 Information indicates that newly Giagnosed cases of AIDS are declining in gay men. We hear that this very information is being used by our legislators to reduce funding. Please do not misunderstand what I'm about to say. I well understand the problems of drug abuse in this country. I know the waste of human life and the desperate need for effective treatment. But every time I turn on the news, I see coverage of the very real and present danger of drug abuse and drug trafficking. Perhaps it is that AIDS is becoming almost too subtle for our media, maybe even for the American public. It's carried on TV and the written media as a special, a health problem of the very few. Maybe it's still seen this way by our policy-makers. Where have all these people been while we’ve been talking about the transmission of demographics of this disease; or were we saying it wrong so that they didn't hear us? In August of 1989, the United States Department of Health and Human Services announced that early intervention of AZT can delay the onset of AIDS in people who are HIV-positive, but we're ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 li 12 13 14 15 16 17 18 19 20 21 22 23 24 25 145 not seeing the numbers of HIV-positive people asking for treatment that we anticipated. Ana we're not experiencing a great increase in requests for confidential counseling and testing. Is it lack of information? Is it that the information has been misinterpreted and people think that AIDS is now curable? Is it denial? Maybe information and education are again the issue, but I believe that there are also other considerations. In our state, only one hundred and eighteen people with monthly incomes of $1,047.00 or less receive AZT via HRSA grant that's administered by the Department of Health and Human Services. The person who is employed and earning approximately $1,100.00 a month -- that's an annual income of $13,200.00 a year -- will not be supported by this system of ours and cannot qualify for this AZT. AZT costs right now are a little over $200.00 a month. How can a person who is earning a little over a thousand dollars a month spend one-fifth of that income on one prescription ina city where the basics of life -- food, shelter, ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 146 utilities -- all of that are very expensive and at a time when this person may need more than just that one prescription? Health insurance at least partially reimburses prescription medication costs. But many businesses and agencies cannot afford the cost of traditional indemnity plans. The Archdiocese of New Orleans employs over seven thousand people. It offers its employees a choice of HMO's but has dropped its option for a traditional indemnity plan because of the cost. The last cost quoted to the Archdiocese in 1989 for an individual person was over $200.00 per month. For a family, it was over $600.00 a month. Our employed HIV person may not have insurance coverage because his company may not be able to afford insurance coverage or he may not be able to afford the employee's share of that coverage. But what about the BIV person though who is covered by health insurance? Why isn't he receiving early intervention? It's so simple that it’s painful to those of us who have not been through this before. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 147 He doesn't want to obtain a preexisting condition that might prevent his obtaining health insurance should he change jobs. He wants to prevent moving into the public sector of health care. He wants to save his care for when he really needs it, when he has AIDS. The service needs are complex, and many people with AIDS and HIV are new to the heaith and social services systen. They may be new to the city drawn there because services are not available in their hometown or their home state. They need help knowing what services are available and they need help assessing those services. They need to have case management available to then. I know that my time with you is very brief, but I have one final point. Politics does interfere with the delivery of services in our state. But for Louisiana and for Mississippi and for other states that are struggling hard to rebuild shattered economies, the primary barrier is inadequate economic systems. I know that people who wrote the criteria for the Department of Health's AZT program. They were pioneers in AIDS, and they understood the needs; but they had to make ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 148 critical decisions on the best use of limited resources. They had to decide who could get into the lifeboat. My friends, without critical federal funding from the Federal Government, states such as ours will be making many more life-threatening decisions. Thank you. REV. ALLEN: Thank you. Any questions from the Commissioners? MR. DALTON: I have a question for each of you actually. I'd like to thank the State of Mississippi -- words I thought I'd never say -- for birthing a couple of our panelists and John Hopkins University for a couple of careers. Let me start with Ms. Lomax and move backwards. You asked a rhetorical question. 1 guess I'd like to have you answer it. You observed that in the wake of publicity about utility of AZT and early intervention and the like, we aren't seeing an increase in people looking for testing or coming forward. You offered several possibilities for why that might be, but I guess I wanted your best judgment on that. Why is it that -- MS. LOMAX: I think I also said I ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 149 don't know how to answer the question. MR. DALTON: Yeah, but I didn’t believe that. MS. LOMAX: I think probably the economy definitely in your states -- and Mississippi is my home state, so I smile when she was talking, too. The economy definitely interferes with the delivery of services. As long as people who have the funds to distribute are having to decide that the $13,200.00 a year you have to pay for your own, I don't think we're going to have a lot more people coming forward. That's pretax dollars. MR. DALTON: Thank you. For Ms. Antoine, I wanted to ask you about substance abuse services in Mississippi. In your remarks and in your prepared statement, you gave us a sense of the number of beds available, but no sense of what the demand is. And I guess I was curious about the extent to which drug treatment is available to those who wish it in the State of Mississippi. And secondly, as I understood, you said that in the Department of Mental Health progran, the HIV counseling and testing is not being ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 150 conducted except perhaps informally in some places. And I think you suggested that the explanation given was cost. And I wanted to make sure I heard that and register how appalling I find that if it's true. MS. ANTOINE-PERKINS: The demand for treatment in terms of beds being occupied is fairly high. These are beds that are funded by the State Department of Mental Health. These are not exclusive of private hospital beds out there. These are public beds. However, in talking with one of the -- the lady who is over the Division of Alcohol and Drug Abuse is on my coalition for my planning grant. There are no counseling and testing services going on now in these programs; but she is interested in looking at doing something with this. However, her word is not the last word: on that. MR. DALTON: Okay. Delicately put. MS. ANTOINE-PERKINS: Thank you. I'm from Mississippi. MR. DALTON: I see. Ms. Voorhees, I trust you're getting paid by He-man Chewing ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 151 Tobacco Company for your plugs. I wanted to ask you, you talked about previous linkages and you gave us one example which is really very helpful for me. And namely, how to deal with private doctors who in their heart of hearts are willing to help HIV patients, but don’t want to become known as the AIDS doctor. And you talked about providing I guess space for them in the public health facility, and which is something I hadn't thought about. I wonder if you have some other examples of what you refer to as creative linkages. MS. VOORHEES: Yeah. At this point, we are starting an early intervention program through the Health and Environment Department. That's where the money was approrpriated. I'm sorry. It was appropriated in the Human Services Department and has been subcontracted out to the Health and Environment Department because Human Services couldn't do it. There was someone creative enough to say I can't do it. That's a new one for us. And you also have at this point a pastoral care training that has been extremely successful in our state that is sponsored and ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 152 supported by the largest AIDS service organization for people who are interested who are professional pastors and also people who are coming from a church perspective. | That partnership has been fostered by the archdiocese and by the New Mexico Conference of Churches working together with that AIDS service organization. They saw that there was a way in there that wasn't going to upset people to begin with. And, in fact, Don and I were talking about this the other day. We think that this has become now a mental health service to the community. I wouldn't like to say push that in terms of that's why we're doing it; but, in fact, what we do is we treat groups of people who bond with each other and also who then see HIV under a microscope. And they're able to apply it toa much larger picture. MR. DALTON: I have one other. You ended up with something I thought was provocative and painful suggesting that we ourselves may be the barriers to care. What I'd really like to ask you is if you have some sense of ways in which this Commission might Find itself if we’re not ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 153 careful being a barrier to care. You might even would like to answer that, but could you just give us more thoughts about the way in which those of us who are devoting all of our energies and time to working with AIDS who in some ways get in the way of what we're trying to accomplish. MS. VOORHEES: Two things cross my mind: One is that you as a group already are doing something that I mentioned in terms of cultivating leadership, being role models, being a mixed salad that works quite well together. That's really obvious in your presence yesterday in that meeting. I was struck by how supportive you are of each other and supportive you were. And in your comments to people on these panels who have been supportive in terms of what you appreciate about what people are doing. So, there you are as our role model. And at the same time, that may be the biggest danger. So many people who I know who have done this over an extended period of time have burned out in some way or another. Few of us are able to actually admit that. And I think someone mentioned this ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 154 morning the conversation that she was taking some time off and wanting to come back to the frontlines. I would ask you all to keep doing your own individual supportive work, your own investigation. It's the only way that I can see that other people can be affected when they feel your presence. That's really a transformational thing that happens to people when they know that you take care of yourself and that you have the courage to say when you’re not. DR. KONIGSBERG: Again, I would like to complement this panel. We've had some excellent testimony today. I'd like to address a couple of questions to Janet Voorhees. First of all, I really am impressed with what you're doing in New Mexico and being in a low -- quote low-incidence state, Kansas, and relate to what you're discussing. So, I may find some excuse to go to New Mexico to get some consultation. MS. VOORHEES: Piease do. DR. KONIGSBERG: I find it a fascinating state. One of things that is particularly ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 li 12 13 14 15 16 17 18 19 20 21 22 23 24 25 155 fascinating about New Mexico is the fact that it is a tricultural state with the Native Americans, Hispanics and Anglos. Can you talk a little bit about any special efforts that you've had with Native Americans? That's the main concern that I have. MS. VOORHEES: I hesitated how much to go into Indian Health Service in my presentation. I hesitated so much, I didn't say it specifically. DR. KONIGSBERG: Don’t hesitate so much. MS. VOORHEES: Okay. It is very difficult to explain the way that the Indian Health Service works even when you ask Native Americans. What we have done to answer your question is on our planning grant, we have specifically asked people from Indian Health Service to join us as well as to do -- we've done are sort of a mini version of what you're doing. We go all around the state and ask people on the reservations and from the pueblos to come and tell us what their situations are. What we find there is that because its so rural, because it's such a tightly-knit society ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 156 © 1 | when someone goes to get tested, they might run 2 {|into their aunt who exactly is the person drawing 3 | the blood. 4 So, what we have done is to try and set 5 | up an alternative transportation reimbursement 6 | system where people can come to other regions to 7 |] get tested. That has helped actually. It's 8 | increased the number of Native Americans 9 | three-fold in the last year. 10 There is also now collaboration going on 11 | between the Health and Environment Department and @ 12 | IHS at the state level. And they're really 13 | advocating it at the federal level to figure out 14 | how to deal with situations like what happened 15 | this year. 16 IHS did not release the money for AIDS 17 | for the Fiscal year that we are now in until May 18 lst. I guess that will never happen again. There 19 {was enough of a stink made finally by enough 20 | people. Those sorts of groups. 21 DR. KONIGSBERG: I was also 22 | intrigued with your comment about the -- it takes 23 | some courage to say that you can’t do something in © 24 | public agencies which does take some courage. It 25 | also takes some courage to say you can do it and I ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 PO 10 11 @ 12 | 13 14 15 16 17 18 19 20 21 22 23 @ 24 25 157 guess the point is knowing when to say I can and when to say someone else needs to. And that's a tough decision. Thank you. MS. DIAZ: Just one question for Janet and one question for Rebecca. Janet, how do you keep the enthusiasm in those that work around you within the planning constraints of normal use in the future that will need implementation at the local level? I kind of find myself torn with the whole idea of the private projects, the planning projects that really may show some hope down the tunnel, but we're really not sure of how that will all come together in terms of the dollars and resources that are needed to implement these plans. I just wanted to know if you could give us a word of wisdom on that. MS. VOORBEES: I wish I could. It's the question that we've asked since we begun these planning grants how to do something without implementation, how to keep the continuum and how to keep the momentum going. I see it on three levels: One is funding obviously; one is systems implementation. But the other is consciousness-raising. We have ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 158 really had a good time in this last year. I hate to say that. I actually struck it out of the grant proposal because I know that will sound rather Californian. But, in fact, having people come together and having national leaders -- you know, June’s with us last month. We have had other people come nationally to give us a real shot in the arm. You all really do bring not only authority and expertise, but you bring the feeling to people, the experience to people that they are important. And that's what we have tried to do in this process is to remind people that they really can come up with a solution for this. When I saw these little faces in February looking back at me at the first planning symposium saying tell us what to do, I think I need to go get another job. But what has happened in the interim is that by not doing, by keeping our hands away for a change, people have come up with fabulous solutions to things and new alliances. MS. DIAZ: Thank you so much. Rebecca. You didn't talk about what your agency ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 159 or program does. I'd just appreciate your concentrating on describing the global situation in New Orleans. But I know that you are one of the few funded RWJ programs that is doing a really tremendous job in Louisiana. I happened to have been there in the training of Hispanic ministers to address HIV in congregations. And I hear so much about what you’re doing. In a capsule, could you tell us what it is you're funded for? MS. LOMAX: New Orleans AIDS Project was originally funded as a consortium of services in New Orleans by the Robert Johnson Foundation. We received additional funding two years ago from Health Resources Services Administration. And at that time, we also received a second RWJ grant, which is the one you attended at the Regional AIDS Benefit Network. We have spread out into portions of five states providing training to ministers and to congregations. In order to leverage the similar resources that Scott was talking about earlier, care teams to go into the home and support the care givers and provide the supplementary volunteers. It's been, I think, very successful. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 160 It's been a rough job, too. The New Orleans AIDS Project has funded health education. It's funded primary care services through Charity Hospital in New Orleans. Health education services in our city right now primarily are with no AIDS task force. Our part of the project has been mental health and case management services. So, that's what we’ve tried to develop. We're all looking now at where we're putting all of those to bid for funding as this money runs out. MS. DIAZ: Thank you. REV. ALLEN: Any other questions? All right. Well, thank you very much. We appreciate your input. And I will like to make one announcement before we break for lunch. There is a sign-up sheet outside for public comments on the blue tablet. And if you would like to make public comments between three forty-five to four fifteen. If we have enough time, each presentation can be three minutes. (Short recess.) REV. ALLEN: I'd like for the next panelists to come forward for the one thirty testimony. Roslyn Cropper, Desire Narcotics and ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 161 Rehabilitation Center, New Orleans; Jean Derry, Field Operations Division, Oklahoma Department of Human Services; Paula Elerick Espinosa, Southwest AIDS Committee; and Steve Hummel, Good Samaritan Project, Kansas City, Missouri. I’d like to begin with Jean Derry, Roslyn, and Paula, and Steve. MS. DERRY: I told you I'd be back. My name is Jean Derry. I'm with the Department of Ruman Services in Oklahoma City. I’m the Department AIDS Coordinator. I’m just proud to be here. Thank y'all for inviting me. 1 shouldn't be here today. The person that should be here today is a gentleman who was a dear friend of mine, my mentor whose name is Tom Self, who is the associate director of the Department of Human Services. Earlier in this past decade, he was diagnosed with AIDS and put Oklahoma in an extremely unique position. We had an official very highly placed in our human services agency who had access to the governor, to other public agencies, who had AIDS who made AIDS very real to people very quickly, who made it very difficult for them to say, no, this is not important, this ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 162 is not real in Oklahoma. Tom was astute enough and realized that he wasn't going to be around forever. He coerced out of me a commitment about a year and a half ago that when he became too ill to continue to build programs and to get people to work together in Oklahoma that I would do that and I made that commitment to hin. Tom did two very important things in Oklahoma: One was he worked directly one-on-one with PWA's who were having problems and essentially was their case manager, whatever their income base may have been, whether they were in trouble with their employer, and were still working or if they were trying to access Medicaid benefits. The other very important thing that Tom did was talk with high level officials and speak for persons with AIDS in Oklahoma. Re gave us two very -- he gave us kind of a mixed blessing in that we got way ahead on a lot of things and we fell very far behind in others. Before Tom became unable to work, he said, Jean, I want you to do two things. I want you to develop a case management program and I ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 163 want you to develop a coalition of people in Oklahoma to carry on what I've been doing. I said, okay, that’s easy. The first thing I did was get ona plane and come down here and spend a day with AIDS ARMS and learned a great deal and then I have replicated what they have done ina public agency rather than ina private agency. We don't have the look of AIDS ARMS, but we have the feel of AIDS arms. We opted not to provide that program through Medicaid because of the economic restrictions, financial restrictions. We instead found extra monies through Title 20 programs, social services block grants and have funded in that manner. We have placed two case managers in Tulsa and two in Oklahoma City who were essentially dedicated to serve the persons in those counties, which comprise about sixty to seventy percent of our AIDS-diagnosed cases in Oklahoma. We had difficulties almost immediately after they were placed with accessing nursing home beds and long-term care in general. We have been very fortunate in Oklahoma in that we have a Title ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 164 19 operating long-term care programs called NTMC, Non-Technical Medical Care, and we have been able to use this very creatively along with family and friends and others to provide care. Nursing home care continued to be needed in Oklahoma. We couldn’t get it. We eventually made contact with the civil rights office here in Dallas, the Regional Civil Rights Office, David Winters, Ted Carl, and a representative of Oklahoma. They did some investigating. They talked with our Medicaid director. There are still investigations I understand to be done for nursing homes in Tulsa that have been financially sanctioned. They have had Medicaid monies withheld. They are appealing that currently. We don't have obviously the results of that appeal, but that will weigh heavily where we do go in the immediate future with access to nursing home beds. We’ve talked a lot in the last couple of days about this issue because I can throw this out the window. It's been said in many ways. We've talked about the need for national health care and that's true. We need it. There's no doubt. The reality is what we have. What the Federal ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 165 Government, and the state government puts a lot of big bucks into is Medicaid. I think what we've got to focus on at this point is taking Medicaid and making it work for as many people as we can as well as we can, and I'm talking in terms of broadening the scope of services as well as broadening the eligibility criteria. There's a lot of work to be done there, and I think instead of pushing the river, I think we can just ease the direction of the flow a little bit and maybe take things that are already moving and kind of direct which way they go. I think that will be helpful to us. The main things I wanted to talk about today or I wanted to talk with you -- time goes too fast. We have been able to use a lot of state money and again we've used Title 20 money to shore-up surfaces that were not able to provide through the Title 19 program through Medicaid. Again, Oklahoma is an institutional state. Medicaid reimbursement drives the services that we have. We would sure like to see some changes in Medicaid reimbursement incentives. We have been able to provide state money ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 © 12 13 14 15 16 17 18 19 20 21 22 23 25 166 for family members to provide NTMC rurally where you can't find anybody else to provide it. We would like to see Medicaid allow family members in those circumstances to provide that. Medicaid doesn’t work well with this disease. It doesn't work just real well with any disease. AIDS has just highlighted the flaws and the apparent weaknesses in that program. And I'd be happy to answer any further questions. Thank you. REV. ALLEN: We will have dialogue after all the testimony. Let's see. Paula Elerick Espinosa. MS. ESPINOSA: Before you start timing me, I just wanted to thank each of you for the interest you've taken not only in general but by your questions here today. It’s very encouraging, as some of us said at lunch, to know that we are being listened to. REV. ALLEN: Now, how could I time that? Okay. MS. ESPINOSA: I'd like to thank you for your dedication and efforts and more than anything for allowing me to speak to you today. I share with my colleagues here as well as in E LLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 PO 10 1i 12 13 14 15 16 17 18 19 20 21 22 23 24 25 167 El Paso and West Texas the belief that AIDS has created opportunities for positive change in all areas of society. That is the underlying theme that keeps me going on a daily basis. I come to you today from a border community. El Paso and its sister city Juarez, Mexico, represent the third largest metroplex in Texas with a combined population of over two million. Barriers to development and delivery of AIDS-related services in a border community are as much a reflection of the challenges posed by the stigmas associated with this disease as they are symptoms of an overburdened health care delivery system. A local insurance carrier estimates that as many as fifty percent of El Paso's population may be without medical insurance. The reality in a community with one of the lowest per capita incomes in the nation, is that an overwhelming number of citizens, in a city whose population is seventy percent Hispanic, are under- or unemployed and twenty-seven percent of our population of seven hundred thousand live at the poverty level. To understand barriers to AIDS patients, ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 168 one must understand how health care is utilized by this indigent population. The county hospital, Thomason, is not a last resort for medical services of this disadvantaged population. It is the first response to medical emergencies that could have been avoided with preventive primary care, treatment or social services. The result of this dependence on Thomason Hospital is an overburdened health care systen. Not only must Thomason care for a majority of El Paso's population, it absorbs the costs of caring for another unique population: Undocumented workers from Central and South America, primarily from Mexico. A few weeks ago, an HIV-infected baby was born in Thomason to an HIV drug abusing Mexican woman all of eighteen years old. This HIV-infected newborn is now in the custody of Child Protective Services of the United States Department of Heaith and Human Services. The severity of this situation is underscored by the recent approval by the board of directors at Thomason Hospital to request a sixty-seven percent tax increase from the county government. Who will pay the bills and who will ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 169 provide the needed services? We have heard that federal dollars are not guaranteed. But, in a border community, a federally-impacted community, solutions cannot fall solely on the shoulders of already overextended taxpayers. When we examine the needs for persons who are HIV-infected, we are forced to take into account the viability of our entire health care infrastructure. In a global context, AIDS may be the catalyst for creative restructuring of our national health care systen. The single greatest barrier to social services are the economic realities of this community that I've outlined above. Additionally, specific barriers to social services the persons not only along the border face, but in the rural areas we serve in West Texas and in Southern New Mexico must also be discussed. To leave out West Texas from these proceedings would be to ignore the problems of two point six million people residing in a hundred and thirty-five square miles or roughly the land mass of New York, New England, and part of Pennsylvania. If we were our own state, and there are rumors floating about succession, we would be ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 170 the fourth largest state. One point six million of these people reside in rural areas. For most of us, distance is an abstract concept; but in West Texas, it is a very real challenge. Let me begin with barriers to social services in the rural areas of West Texas. The rural areas are characterized by traditional moral values, and these communities are not very tolerant of diversity directly affecting the delivery of health care especially to HIV-infected individuals. In El Paso, as in the rural areas of Texas, homophobia does still affect the quantity and quality of social services available. Dentists and private physicians are a rare commodity. And when they are available, homosexual men, in particular, are still very reluctant to take advantage of these services, In rural areas that extend from Van Horn to Amarillo and Odessa, the isolation of AIDS patients is more severe due to ignorance and prejudice that has been not eliminated. Thirteen counties in West Texas do not have a physician. Diagnosis of AIDS cannot be done without a ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 171 physician and the communities then cannot prove the needs for social services and funding. Twenty-six counties do not have hospitals. In counties that do, administrators cannot take the risk of accepting AIDS patients that may cost the hospital $70,000.00. Rural hospitals already represent the increasing number of failing hospitals. A consequence of non-existent hospital or physician resources obviously is the lack of social workers that go along with that. In rural areas, there is no such thing as confidentiality. When your only support system is the Texas Department of Health coordinator or nurse, it is quite obvious you are sick or ill when the TDH car pulls up to your house. The "Coming Home“ phenomenon or the numbers of AIDS patients who return home are not accounted for formally after being diagnosed elsewhere. In El Paso, there are particular barriers associated with culture, education, and economics, in particular some culture items. In the Hispanic and Mexican tradition, the male insertive does not consider himself to be homosexual. The homosexual in the act is the ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 172 passive male. The direct consequences are denial of risk, of diagnosis, and complete resistance to care. Bisexuality has placed the entire family structure, but in particular women and children, at high risk for HIV infection because Hispanic men, more commonly than their white counterparts, will maintain a facade of heterosexuality while secretly engaging in sex with men. Homophobia in the Hispanic family also leads to denial even if the route of transmission was heterosexuality or IV drug abuse or substance abuse. Certain communities are isolated from information and services in particular in the poorer areas and subsections of our city that are separated from any kind of technology or health services. In addition, the lack of transportation, illiteracy and bilingualism pose additional barriers. El Paso has a staggering number of teenage high school dropouts who remain isolated from the social programs they desperately need and we are already seeing how this will affect HIV numbers. In all of this, there are successes that ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 il 12 13 14 15 16 17 18 19 20 21 22 23 24 25 173 we shouldn't ignore. El Paso has had, like other communities that have spoken here today, a planning program that has been going for a year now. We are coordinating services along with all the other West Texas counties in Texas, that is, Midland, Odessa, Harlingen, Lubbock, and Amarillo. But above everything, planning cannot be done in a vacuum. Health care cannot be delivered in a vacuum. And we were discussing at lunch quite interestingly that when you discuss planning for early intervention programs, one of the responses you will get and one of the responses I got from the physician at the BIV clinic is: What will you do to ensure that this clinic does not go under when you are sending us those newly discovered patients through this early intervention programs to the clinic. That isa very real concern that we have. The other real concern is that planning can be done; but when there is no implementation, it's probably going to be fruitless. And that would be the final recommendation I would leave with you. And that is that community-based organizations experienced in providing services ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 174 must be granted the opportunity to establish continuity with these successful programs. Funding over longer periods of time is imperative for long-term effectiveness in our response to this epidemic. Because funding is granted ona yearly basis, as you know, energy and time must be focused every year with no guarantee of sustained funding. This process is unproductive and very stressful, and proven programs can often lose very, very successful grounds that they have made. Thank you. REV. ALLEN: Steve. MR. HUMMEL: Honorable Members of the Commission: I'm the Executive Director of Good Samaritan Project, Kansas City, Missouri's largest AIDS Service Provider. At Good Samaritan Project, we provide a wide range of social services including volunteer programs, home health care, emergency assistance and counseling. We also have several education and prevention programs and a National Teen education hotline called Teens TAP (Teens Teaching AIDS Prevention.). The number is 1-800-234-TEEN. In the Metropolitan Kansas City area, we have approximately twenty-five hundred cases of ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 175 AIDS and eight to ten thousand HIV-infected. At the project, we currently serve five hundred clients and project as many six hundred by December of this year. In Kansas City, we have four frontline AIDS service organizations: Good Samaritan Project, Kansas City Free Health Clinic, SAVE Home - providing hospice and limited housing, and Heartland AIDS Resource Council - a food market for PWA'’s with AIDS. Luckily, these organizations work closely together, share resources, train volunteers, and do some kind of fundraising. We are also fortunate to have a city-wide AIDS Council, whose mission is to provide leadership in facilitating and advocating a planned and coordinated response to the AIDS crisis in the metropolitan area. Broad representation on the AIDS Council of community leaders, including corporations, foundations, United Way and hospitals has begun to break down some barriers that exist in Kansas City. We are fortunate in the State of Missouri to have a committed and active Bureau of AIDS Prevention within our Health Department. In ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 176 1989, the Bureau of AIDS Prevention started a new program called Care Coordination. The goal of this program is to assist in the delivery of services and facilitate access to entitiement programs including a Medicaid waiver through case Management that employs the skills of social workers and nurses. In 1990, Good Samaritan Project signed its first contract with the Bureau of AIDS Prevention to become a satellite of the Care Coordination program as a pilot project. If we are successful, which I believe we will be, this program will include other contracts with AIDS service organizations across the state and continue to grow as a project. All of this may sound encouraging and it is. Agencies in Kansas City, Missouri, work well together and share the burden of the crisis. If it wasn't for our ongoing lack of funding for care services and expansion, continued education and prevention, I might have little reason to be here today. There are four critical] areas that must have attention in the coming year if we're able to maintain a level of quality services in our ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 177 community. These are: Social services, medical services, education, and long-term care and housing. Good Samaritan has over the past twelve months experienced a sharp increase in requests for social service intervention. Great numbers of clients seek emergency assistance for rent, utilities, and medication. In the last eighteen months, I've seen a disturbing new trend develop which includes families with one or more infected member, including children and single mothers with one or more children. Not only do these families have extraodinary financial needs - two families in one week had over $600.00 in utility shut-off notices. And this is a common phenomenon for us, but most need child care for all or part of the day because their parent is ill or hospitalized or one parent is overwhelmed by the needs of the other ill spouse. We have no way to keep up with these requests, and other social service agencies in our community are as strapped for emergency services and funds. Currently, our case manager to client ratio is one to a hundred and fifty. Standard ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 178 practice suggests one to thirty or forty-five. We make do with volunteers, but have no choice to add staff this year or begin turning clients away. Additionally, we are seeing large numbers of clients who have serious drug addiction problems that compound HIV disease and in some cases, supersedes HIV. For these clients, access to treatment is often impossible if the desire for treatment exists. Our staff counselor is overwhelmed by the huge needs for sensitive and informed mental health services for over a hundred eighty-one of our clients. Therapists who are trained and affordable for outside referral are rare. We are convinced that sensitive therapy is extremely effective in stabilizing clients physically and emotionally. Those clients who have professional assistance are more able to meet the challenges of HIV disease in many cases, find their physical condition improved or stabilized over a period of time. In the area of medical needs, our most critical problem is the lack of trained physicians in private practice and in public health institutions. Physicians in Kansas City who see ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 il 12 13 14 15 16 17 18 19 20 21 22 23 24 25 179 people with HIV disease have large caseloads and long waits for new patients, some up to three or four weeks. Public hospitals and clinics are at maximum capacity or lack trained doctors and nurses to effectively treat the many manifestations of HIV. Our clients struggle to maintain health insurance premiums once they become disabled or lose work and fear their level of care will diminish once they are on Medicaid. REV. ALLEN: Excuse me, Steve. So we can have time for questions and answers, your written testimony can be submitted into the record and give you an opportunity for dialogue. I hate to cut you off, but if you want to make your closing remarks. MR. HUMMEL: Sure. To close, each service provided in Kansas City, Missouri, recognize that unless we receive greater funding in twelve to eighteen months, we will be forced to draw the line and stop taking new clients. After five years of service, funders continue to work with suspicion that AIDS has developed in Kansas City, although, this is beginning now to change. I can only guess that ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 5) 16 17 18 19 20 21 22 23 24 25 160 funds will be as usual, too little, too late to respond to our crisis of need. REV. ALLEN: Charlie. DR. KONIGSBERG: A couple of points and questions of Steve Hummel. I think it's important to point out that there's a perception that in the midwest, in fact, a lot of mMidwesterners I think believe that AIDS is a somebody else's problem. I think we may have talked about this before. While I'm not sure I totally agree with the case count, the fact is that Kansas City, Missouri, looking at both states, is not alone in this area and does have many problems. I wonder if you would elaborate a little bit. One of the concerns that we as the Sante Fe Tri-~Regional was some way to pull together the two-state area and there have been some discussions about it. For those of you not Familiar with the Kansas City metropolitan area, it does cover both Kansas and Missouri. Kansas City, Missouri, Kansas City, Kansas, which is Wyandotte County, which is one of our highest case rate areas in Kansas and Johnson County in Leavenworth also are ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 181 impacted from AIDS. But it does raise a number of issues that are difficult to deal with in terms of planning a total service package across state lines, across county lines, across city lines. It's quite complex. And, Steve, do you want to elaborate on that a little bit? MR. HUMMEL: Well, I think there traditionally has been a real separation in the city between the Kansas side and the Missouri side and I think that continues with the disease. The AIDS counseling has made some efforts to bring greater cooperation between health departments. But the Kansas side is mostly suburban and very wealthy and also has a real problem with denial that the disease exists in that community, and as well as hunger, homelessness, and other problems. We serve about a hundred and fifty clients on the Kansas side. We try to work with the health department in that area, but many of our clients end up moving across the state line to access Care Coordination and Medicaid waiver services. And this is very common that we'll end up advising some of our clients to get across the state line so that they are able get some of those ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 182 kind of services. However, Kansas offers other public funds that for some of our clients it's better for them to move from Missouri to Kansas when they're still physically capable to have access of those funds. DR. KONIGSBERG: Are those social service funds as opposed to health funding? MR. HUMMEL: Yeah, be it entitlement programs. | DR. KONIGSBERG: That's what I thought. MR. HUMMEL: Right. DR. KONIGSBERG: The case figures that I have available to me on metropolitan Kansas City are something over eight hundred including the Kansas side. But the number of infected is as you state and certainly would indicate that it will be a continuing problen. Thank you. MR. GOLDMAN: Jean, I was wondering have you found that the civil rights investigation and the results had any changes in attitude on the part of nursing home and other attendant care institutions to be more accepting? MS. DERRY: No. It has changed the ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 183 manner in which they respond to our requests for nursing home beds. They no longer say we're full or they no longer say we don't take AIDS patients; they say I'll have to get back to you on that. And there was -- since you brought that up, there was a comment made in the earlier panel before lunch that they’re a forty-seven dollar a day rate was keeping nursing homes from providing the care and that's not been our experience at all. We established a hundred and twenty-eight dollar a day rate which is three times our normal rate for nursing home care just for AIDS patients and got no takers. The only facility we've been able to place AIDS patients in took them at a forty dollar a day rate and has shown that their cost is no more great than their typical geriatric patients. MR. GOLDMAN: Do you have any idea or an explanation as to what their reluctance is? Is it simply a matter of -- MS. DERRY: They have a number of fears, mostly relating to loss of staff, loss of residents. The facility that we have had sex with -- sex with? Take that out of the record. Success with. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 184 (Laughter. ) REV. ALLEN: You have had what? What did you say? MS. DERRY: Well, you know, I've got safe sex on the brain. We've had a lot more safe sex than we have success. I better stop while I'm ahead. MR. DALTON: You just kept going on. MS. DERRY: What was the question? MR. GOLDMAN: You were going to elaborate on the perception of nursing homes and why they were reluctant to take patients with AIDS. MS. DERRY: Okay. In the facility we have had success with did call in their residents and the families of the residents and explained to them upfront we are going to accept patients with AIDS. They called in their staff and told their staff the same thing. They had one employee who resigned. She came back one week later and asked for her job back. They had no residents leave. They had no extensive costs above what Medicaid would reimburse for. We offered to pay ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 185 with state funds, if necessary, additional charges that they could document that would be pertinent specifically to an AIDS patient and there were none that I am aware of at this time. So, we happen to have a very good relationship with the AIDS Commission at our Health Department and Department of Human Services. And we have had the Health Department out doing training at these nursing homes. We've offered them every kind of service we can think of. I don't know what to do next other than we are waiting to see what the results of this hearing are or the appeal. MR. DALTON: Is there anything different about the nursing home with which you have had successes than the others other than that fact that you're discussing? MS. DERRY: Well, I guess what I could describe as it's a small kind of mom-and-pop operation as opposed to one of the large corporate Franchise kinds of facilities. They had a couple of vacancies. It's not a new facility. They didn’t have a lot of huge overhead costs and so forth, but their care was excellent. It was very clean. All of the patients that we've placed ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 186 there have been very happy there. That's the primary difference, I guess. MS. ESPINOSA: I have a point on that because we have a very similar situation where we have one nursing home that has taken the initiative and educated the family members, the residents, as well as the staff for over a year now. And I, just from a personal opinion, believe having talked to the administrator of that nursing home as well as recently the administrator of the nursing home that have refused, on every day the reason changes to take a client with AIDS. It has a lot to do with the leadership of the administrator. And one approach has been to discuss with the administrator and the successful nursing home making that program, an education in-service program, a model for the rest of the administrators and having her as the administrator approach other administrators to get this education done within their staff because it is the law, and currently we're waiting for corporate approval of that idea. But I think what it boils down to is the ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 187 leadership of the individual nursing homes and how willing they are to accept the inevitable. MR. DALTON: What a wonderful idea, using the nursing home that you have success with, those administrators as trainers of other places. MS. ESPINOSA: Yeah. It has to be within the -- you know, the inside leadership, I think. Because coming from the outside, 1 think that's also another reason is we must appear to be threatening to get on the phone, which I just did out of desperation. I said, all right, you want to play the game, we’ll play. If the only alternative we have is to file a formal complaint, then we will do so. And they have come back and said go right ahead and that's where we're at. MS. DERRY: If I may, the response we have had to that very same kind of activity was they -- the other nursing home administrators or owners where this person had encouraged to continue to take AIDS patients as if there's anything they can do to help and, you know, in other words, keep the monkey off their back. MR. HUMMEL: I want to make a comment on this. In Kansas City, we have the same ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 188 problen. We don't have nursing homes that takes anyone except in St. Louis. There was a hundred twelve referrals to long-term care from the state that have been documented and only four of those people were placed ina nursing home outside of St. Louis that has four beds. And at this point, several organizations in the ACLU and a very large law firm in Kansas City are looking at a class suit to be filed in federal court and it's becoming a very real possibility -- probability at this point because we see this as the only way to finally change this Situation. Because we believe the same thing will occur. One nursing home opens its doors, it becomes the AIDS nursing home and it goes no further than that. DR. KONIGSBERG: I wanted to follow up a little bit with the nursing home question particularly to Ms. Espinosa and Jean Derry. I guess one of my functions as the state heaith official is to regulate nursing homes and hospitals, which I guess my question is: Did that enter. into it at all in terms of that part of the. state government would be one question and then could you elaborate a little as to exactly what ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 189 Hickfa'’s (phonetic) interest was and what rulings they had to bring about some pressure to allow access for persons with AIDS and HIV disease into nursing homes? MS. DERRY: Basically the policies that Hickfa used related to the Medicaid assurances that our department agreed to in accepting Medicaid monies; and we, in turn, then got those assurances from the facilities that we contract with, that they would not discriminate against any persons on the basis of race, sex, handicap, etc. We employed those policies in that. I'm not sure about your question with the hospital and nursing home regulations in that regard. DR. KONIGSBERG: It was primarily the nursing home that I was concerned about. MS. DERRY: Okay. MS. ESPINOSA: That would be exactly the same policy structure we would follow as well and that is the assurance that has been agreed to. It’s no different and our nursing homes have signed that. DR. KONIGSBERG: So that Hickfa was then responsive and helpful in this regards. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 190 MS. ESPINOSA: Well, he doesn't -- you're ahead of us in that sense. For us, that’s the next step, to see whether they will enforce that or how far it's going to have to go before. MS. DERRY: We most recently received the letter from Hickfa to the Medicaid directors laying out those procedures. Our experience in Oklahoma, however, began back in January or I suppose right after Christmas and things seem to have been formalized at the federal level since then. DR. KONIGSBERG: Thank you. MR. DALTON: A question for Paula Elerick Espinosa. Anything about the story you told about the hospital, Thomason Hospital, that took the patients from Mexico. And then you indicated that the county hospital board of trustees had decided to ask for sixty-seven percent increase in Funding from the county. You didn’t indicate whether they had voted to increase the funding sixty-seven percent. You raised the question who's going to pay for this. I guess my question is: What does happen along the border when the counties along the border wind up initially providing the ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 191 services for people coming across the border? How does that lay itself out? I can't imagine that those counties are inclined and capable of -- MS. ESPINOSA: No, it’s impossible. And this is just a recent occurrence. This is just -- everything is so recent that -- this is, I think, last week that the request was made for this increase. In addition to that, the consequence will be the shutting down of certain services including nightshift, emergency room, which has a direct impact on how we manage emergency admissions for HIV infection and get them admitted to the hospital and taken to alternative care. But to answer your question, the county cannot be responsible for the cost of the care that Thomason ultimately has to deal with because -- and it’s only because this is very new to us. But years back, there was a lawsuit to -~- for the federal funding to be inputted into this system because that's the only solution really for that community and that may have to be taken up again if this is going to be resolved. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 192 In our city, there is a fed-up taxpayers organization, I think, something similar to that, that has just built a community cultural center, an indian reservation cultural center, an old theatre being renovated. People cannot give in more. I mean that's really the bottom line. I don’t think it's an opposition to these things, but it represents how overextended our tax base is. It is so incredibly taxed already based on what we are able to give. And the solution I think is going to have to be perhaps the county government getting involved in putting the pressure on the Federal Government to come to the table and get some solutions because we can't turn anyone away. Or maybe that’s what it will lead to is turning people away at the door at Thomason without -- MR. DALTON: And wait for them to sue -- MS. ESPINOSA: Pardon? MR. DALTON: And then waiting for them to -- are you putting the burden on them to sue the county? MS. ESPINOSA: Maybe that's what's going to have to happen because they’re -- I know ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 193 that they're not in a position to vote and they will tell] you that they will not vote for any kind of tax increase. It hasn't happened and it’s not going to happen. But now they're in a position where they have to make a decision. You can't turn away somebody from your county hospital for assistance after a sixty-seven percent increase. I mean if it had been a ten percent increase, I think they probably would have discussed it and compromised it. But this is a pretty point-making figure and it's drawn all of our attention. And in El Paso, that's why I focused on it. AIDS is just part of this entire system. If our county hospital collapses, the next in line is the Southwest AIDS Organization. That's inevitable because we cannot go on supporting our clients without that kind of assistance, without that kind of care. REV. ALLEN: I have a couple of questions along that line. Are you aware or could you explain to us about the relationship between Juarez and El Paso and some of the health initiatives that have been going on, who in the health department are meeting together, and ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 194 talking about education, and so forth? MS. ESPINOSA: There is a really strong, probably the most national issue is the coordination between both sides for TB control. That's just a phenomenal problem. But along with that comes the dialogue for other problems, one of them being perhaps education for AIDS. That is not happening yet. I think they’ve discussed it in terms of problems, but there are so many other problems. There's TB, the environment, water sewage contamination. All of these issues sort of take precedence, but yet the flow of AIDS is no different. It crosses both ways. The gay community in Mexico are interfaced with our gay community and vice versa. Just recently in the paper they had an article on transvestite prostitutes, IV drug users along the border. Juarez is, from my mother's house, walking distance. From the University of Texas at El Paso, the honor's office you look out into your first generation Mexican/American student you look out into Juarez, not of the United States. We are one community. If that is what we can say, we are one community and our problems are one. And yet, the county government or the city government of ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 195 Mexico is very reluctant with respect to AIDS to admitt to any problen. And so, organizations in Mexico have been forced to sort of take on the work for clients who are HIV-infected without any resources. And the few resources that they have usually come from some collaboration on the El Paso side. And AIDS aside, all of these issues you talk to someone involved in runaway youths and gay youths and any kind of problem that they'll say to you, what we need is initiatives to be able to share our dollars, our programs or our dollars through our programs. If I can't go into Juarez and deal with this problem, it's not going to be solved because we just lose the ravel. It just continues. We lose that link and the problem resurfaces. And if this proves anything, this collaboration with TB, it will be that in order to deal with AIDS along the border it will require that kind of partnership. REV. ALLEN: Do you find a lot of irrational hostility in El Paso and so forth? What are you dealing with in that respect? ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 196 MS. ESPINOSA: I wouldn't necessarily call it hostility, but I would say that we are at a turning point in El Paso. We are seventy percent Hispanic; and in the grassroots organization that I belong to, the talk is, you know, yes, tiempo, it’s time that we start empowering ourselves to take positions of power and this is a Hispanic community. And there is this tension in El Paso of Hispanics being tired of not being able to make the decisions that affect their lives. And the political face of politics is changing and of government. And so, there's that tension. Hostility is not really a word I would use. I think that as a community we get along however. But when you talk about AIDS services, we do ~~ there's the same tension you find in any of the communities. There’"s territorial defiances. We are seeing as -- somebody else accused another organization earlier today of being a gay white male organization and yet the reality is our caseload is primarily Hispanic, our staff is primarily Hispanic, and we are not able to defer sort of that territorial control to the ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 197 Hispanic leadership because they are unable to deal with the homosexual population that they must serve if they were going to deal effectively with AIDS. So, there are tensions that are racially based, but they're not necessarily hostile. They do prevent the delivery of health care, though. Recently we had a collaboration with one of our foes who are now sort of one of our partners ina grant writing session and I think that that’s -- it’s becoming a reality that we're going to have to work together if we're really going to be effective in our community REV. ALLEN: Okay. Anything else? MS. DIAZ: Paula, are you working with the border initiatives at all funded by cCbDC for collaborative work between those border towns here and border towns in Mexico? MS. ESPINOSA: Well, we follow the border initiatives that our health department is taking as Reverend Allen asked with our issues. But in terms -- and we've sort of created our own initiatives with community-based organizations of Juarez. Yes, in Juarez. And our organization has interfaced with two organizations, one that does outreach to gay prostitutes and the other that ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 li 12 13 14 15 16 17 18 19 20 21 22 23 24 25 198 does outreach to IV drug users and their wives and families. And what we do is come to the table to discuss what we can do. We're limited. We can't really even represent our organization because that would be violating the law, but we can go as individuals and say how can we help you to start a program. MS. DIAZ: You might be interested that California recently held a first conference between Mexico and California on AIDS. So, there will be a full transcript and edited monograph and I think it will be helpful to you. MS. ESPINOSA: Very much so, yes, yes. Thank you. MS. DIAZ: Okay. REV. ALLEN: Any other questions? Thank you very much. MS. ESPINOSA: Thank you. REV. ALLEN: The next group of individuals Henry Masters; Luis Fuentes; George Buchanan, Director of North Texas Comprehensive Hemophilia Center, Dallas; Don Maison, AIDS Services of Dallas; and Ted Wisniewski. Do you want to begin, Ted? ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 199 MR. WISNIEWSKI: Members of the National Commission on AIDS, 1 would like to focus on one concept related to our national response to the AIDS/HIV epidemic, and that is, we need more direction and we need it now. I articulate this focus from the perspective of our New Orleans and Louisiana AIDS services configuration. We have been fortunate to have captured virtually every source of federal HIV-directed funding. In some ways, we might be used as a case study to examine what happens when these resources are poured into an area without significant interagency foresight and direction. Despite the noble guidelines in grant RFP's and the best of intentions on the part of project directors and program staff, these grant initiatives cross through an absolutely overwhelmed health care system and service providing community. Early intervention is perhaps the single most important reason for our system's collapse, a system built on multiple informal relationships between community endeavors and health systems programs. Yet, perhaps our response to the demand ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 200 for early intervention can serve as a focal point around which we can build the services configuration that is meaningful, rational, compassionate, and effective. We can only do this if significant federal support and leadership is forthcoming. Six examples of why we need such leadership are as follows: Number one, with limited resources, we are currently struggling with choices of quality versus quantity. Through our previously developed structures and community-based origins push us to uphold quality. The research data, the medical system and the public health tracking and treatment recommendations pull us to manage quantity. Secondly, this tension is further exacerbated in impoverished areas where, quote, hierarchy of needs, close quote, is a very real experience. Federal initiatives that do not give projects the authority or resources to work within communities struggling for mere survival will ultimately do very little to impact the epidemic. Concretely, as mentioned this morning, the pie is just not big enough. But even if enlarged, we need your help in drawing the bold ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 20) lines. It is hard to imagine that we will be able to continue, quote, demonstrate our service models 1£ significant dollars will need to be distributed amongst a substantially enlarged number of infected persons. From a national perspective, help us tease out our most successful approaches so that we might best target our limited funds. Number three: The research is done and the recommendations are very clear, but we have no real way to provide early intervention. Our current waiting period for persons to access public care in Louisiana is greater than six months. The cost for AZT alone to treat next year's expected population at our clinic is better than double our current total clinic's operating budget. The federal AZT support is only a small fraction of what is needed, and the vast majority of these patients are not disabled and thus do not qualify for Medicaid. Clearly, we need your leadership to work with the pharmaceutical industry in lowering the costs. We also need funding for massive volumes of required T-cell studies. Priority should be given to either changing federal Medicaids ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 202 disability regulations or, on the other hand, expanding the AIDS definition to help finance these costly care mechanisms that are now recommended. Fourth, though perhaps clustered in a broad category of human services, medical health care and psychosocial support services do not usually always collaborate effectively. In having to choose priorities, it is hard to imagine that traditionally separate groups will find it easy to work together. Plainly put, physicians and hospitals need to be taught and reimbursed for working with human service workers and community organizations - and the reverse is also true. Persons with skills to translate between such diverse groups and systems .should be sought and promoted. Fifth, even more specifically, we need your guidance to assure that primary health care services and case management services are managed together; though their sites of service provision will be inpatient and outpatient, hospital and home, institution and community, primary health care and case management must articulate a conjoint purpose in response to the HIV epidemic. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 203 Concretely, if out of hospital care is our goal, we must include health care providers and hospital administrators in the development and administration of case management systems to make sure that we move beyond mere community philosophy to institutional nuts and bolts together. Sixth, the administration of pediatric and adult services response is duplicative locally and irrational nationally. The sheer numbers of infected persons and the dollars allocated really call to question how we qualify ourselves as a compassionate nation. Only through federal] leadership can our displaced biases be refocused on a truly humane response. In addition to the above six points, I have offered some more detailed recommendations in your packets that were previously submitted to HRSA National Advisory Committee. Item number 1389 are particularly pertinent to our discussion today. Thank you. REV. ALLEN: Luis Fuentes. MR. FUENTES: (Monologue in Spanish.) Now my English is also sketchy. Good afternoon. I just wanted to say really a very important message. The language is a very ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 1] 12 13 14 15 16 17 18 19 20 21 22 23 24 25 204 important thing we're going to address here. My name is Luis Fuentes and I'm with a group called AVES from douston, and I'm going to have to just basically side with my colleagues. I think they've done a wonderful job bringing in the problems. So, I'm going to present a general overview: The needs of agencies from the Government. We need education. We need services. We also need technical assistance. There are no cooking recipes. We all know that. There’s no specific steps to follow. I think like a family, a program needs to be nurtured, needs to be guided, needs to be educated, and disciplined if required. Problem number one that I’m going to express here is that sometimes we put a program for Hispanics, we sometimes translate that into Spanish and we think that it's appropriate for those who do not speak English. Well, we might be hearing the same label as Hispanics or Latinos, but there is no unit in our community. We come from different backgrounds, from different countries. - We got different lingos. We're very aiffferent. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 il 12 13 14 15 16 17 18 19 20 21 22 23 24 25 205 So, we need to let the target community design their own progran. They will accept it and they will take it better under their wings. We need to empower then. We got three different groups within the Hispanic community. We've got the newly arrived that doesn't have any commands of the language, facing cultural shocks, and socioeconomical differences. We've got the dualistic individuals. I think I’m going to label myself in that category that we’re trying to get acculturated with command, but we still have very strong cultural ties. And if we're talking about my mother, you know, you better stop it because I'm not going to tolerate that. So, that's the way, you know, my Mexican heritage shows here. So, we have very strong ties in traditional family and friends. And then we have the A-traditional. Okay. And I'm sure that the Hispanic community and the whole Texas area is going to kill me for this, but we label that within ourselves the coconut, brown on the outside and white on the inside by name only. Okay. Sometimes we make a mistake of this individual as Latino or as Hispanic and they do not have the ties to their ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 206 © 1 | community because they’ve been fully 2 jacculturated. More labels. 3 This areas needs to be specifically 4 | addressed to design any kind of program or 5 | education or health services. The solution for 6 |} this year is empowerment again. It is going to be 7 | hard to work with some of these individuals and 8 | ask me where our grassroots organization, but 9 | allow us to design our own progran. They will 10 | accept it better and they will help you to promote 11 |] because that's their program. © 12 You need to get participation from these 13 | individuals. Insure their monies. We do need 14 | money. I can hear the same song over and over 15 | again. Top forties here. We need more money. 16 | Okay. But this money should be directed to 17 | minorities, directly to groups that are really 18 | working in the community. 19 There are some -- and when you put 20 | panels like this, do not just include a Hispanic 21 leader. Include members of that community. 22 | Hispanic leaders sometimes we get so wrapped up in 23 | our reporting and administrative requirements that © 24 | we lose touch with our community. We also need 25 | technical assistance. A lot of times, we know how ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 207 to do the work; but we need help in planning. Administrating and reporting. Second problem: Always assume he or she is bilingual; he or she speaks Spanish. We have all this material in Spanish. Isn't that enough? Well, we are assuming and you know what happens when we assume. Not because you have a neighbor or our maid who is a Hispanic individual, that makes you an expert to rate another person as bilingual and bicultural. You need to be sensitive. There are other cultural issues that we need to address. AIDS does not stand alone. We got sex roles; we got families; we got family involvement; we got machismo; we got homosexuality cultural perceptions. We have a lot of problems that need to be addressed. It’s not just Spanish what we need. We need sensitivity and biculturism. Let me just give you a quick example here. One of my clients went to a counselor. And this individual counselor, this Hispanic lady, for about an hour -- okay, and just to show you that there's a lot of respect -- she didn't say anything. She was just nodding and saying okay, ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 208 okay, okay. Just to find out that the -- after an hour, this individual didn't understand a bit of English at all. You call this sensitivity? And this from a professional. The solution, we need to hire individuals -- we need to be selective. You need to do some -- we need to do some search and research. Don't just settle for just the token. Not because you're Hispanic or you're brown or you have brown hair or black hair. That does not make an expert. And another thing: Degrees will not help you if you're not sensitive enough. There is a program in the area. That's all they need. Well, let me tell you about this one here. A greater number of agencies are getting more and more involved in the fight against AIDS. Why? Because there is more money. Okay. And they are more powerful than small agencies. So, they put much better, more complete with better objectives and more evaluation than us. So, they get the funding. It's a lot easier for federal agencies to fund some of their programs when we small agencies do not have a track record. Well, how are we going to get a track record if you don't ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 li 12 13 14 15 16 i7 18 19 20 21 22 23 24 25 209 help us out? They put beautiful reports, wonderful. They manage to cover their reports very well. So, you need to also watch the small underdog agencies. We struggle and sometimes we collapse and you see us as failures. So, you see. I’m glad that we didn't fund then. So, we try to work with large agencies; but there is a lot of turf protection. And that doesn't just happen in the Hispanic community. That happens in any group of people. REV. ALLEN: One more minute, Luis. MR. FUENTES: So, please become watchdogs for the monies and the program. And just to conclude, I want to just give you four key words that I use myself. I practice what I preach. Observe. The language, the Giscrimination, the politics, the education, the culture, the shame, the guilt, the phobias, the denial, the behavior, and all that. Observe, watch. And listen to the affected ones, to the family, the loved ones, the community, the church, ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 210 © 1 | the school, the children. Also listen to the 2}pain, the fear, the anger, their concerns. 3 Now, trust. Trust yourself first and 4 |] your ideals and then earn the trust of the 5 | community. If you don’t earn the trust of your 6 | community, it's not going to work. 7 Now it's time to roll up your sleeves 8 |and get to work. By observing the phobias, the 9 | fears, by listening to the pain and the fear, 10 | their pride and by earning their trust, only then 11 | you can help. They’11 tell you what they need. @ 12 And you can do one of three things just 13 | to conclude. Get involved directly, provide 14 education or services. Get involved indirectly. 15 | Help us in politics, advise and support. Or 16 | kindly, please get out of the way. Muchas 17 | Gracias. 18 REV. ALLEN: Thank you. George 19 Buchanan. 20 MR. BUCHANAN: My name is George R. 21 | Buchanan. I'm a Professor of Pediatrics at the 22 | University of Texas Southwestern Medical Center 23 | here iin Dallas. My specialty is Pediatric @ 24 | Hematology-Oncology, and one of my particular 25 | interests is hemophilia. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 | ee Le 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 211 I direct the North Texas Comprehensive Hemophilia Center which provides care to most hemophiliacs in North Texas. As you know, many thousands of hemophiliacs were infected with HIV during the early 1980's and as such constitute a large and unique group affected by this tragic epidemic. Hemophilia is an inherited condition affecting one in seventy-five hundred males. It is characterized by a delay in blood clotting following minor injury. The treatment consists of intravenous infusions, thirty or more times a year, of a blood product that contains the missing clotting factor. During the 1970's, home infusion and even self transfusion programs were initiated and comprehensive treatment centers were developed to assist these patients to lead more normal lives. It became clear that hemophiliacs were capable of having a normal life span and, moreover, that their care was highly cost-effective. However, tragedy struck in the early 1980's when the plasma pools used to produce concentrate became infected with HIV. By the time that HIV was identified as a cause of AIDS in ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 212 1984, more than twelve thousand of the twenty thousand hemophiliacs in the United States were infected with the virus. Over thirteen hundred hemophiliacs have developed AIDS which is now the leading cause of death in these patients. Now, hemophiliacs certainly share with other risk groups many of the medical and psychosocial features of HIV infection. But this population I think is unique. For instance, many of these individuals are older children and adolescents, an age when HIV infection infrequently occurs in other risk populations. Most are heterosexual in their orientation. Hemophiliacs represent the entire socioeconomic and cultural spectrum of citizens in the United States. Most infected patients exhibit no other high-risk behavioral characterisitcs predisposing to HIV infection. Most importantly, as a group, hemophiliacs are no longer at risk of new HIV because of technical advances in virus inactivation of the plasma concentrates. Now, £Lrom my perspective here in North Texas, I can speak fEFirsthand about the tragedy of HIV infection in hemophiliacs. Over two hundred boys and men with hemophilia attend the North ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 213 Texas Comprehensive Hemophilia Center in Dallas. Over eighty of these are infected with RIV and sadly several have died of AIDS including a number of patients whom I cared for, for more than a decade. The HIV epidemic is certainly a disaster for every one, but especially so for these patients and their families. I know the focus of this Working Group is identification of the social barriers encountered by these patients and I'd like to briefly outline some of those specific to the hemophilia population including economic barriers, cultural barriers, psychosocial barriers, barriers in the professional support systems and briefly, geographic barriers. The economic barriers for these patients are overwhelming. The costs associated with hemophilia care have quadrupled during the past five years coincident with the development of safer, fewer blood products devoid of HIV. Hemophilia is now the most expensive of all chronic medical conditions, with typical costs of fifty to one hundred fifty thousand dollars per year just for the blood products vital for life. Even patients with excellent private insurance are ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 oe —- 13 14 15 16 17 18 19 20 zi 22 23 25 214 approaching their lifetime caps, creating worry and uncertainty about future coverage. Many hemophiliacs have become indigent and face the stringent and often inconsistent guidelines promulgated by Texas Medicaid. The state agency charged to provide assistance to families with chronically ill children including hemophiliacs; that is, CIDC or Chronically I11 anda Disabled Children Services in Texas -- has been woefully short of funds for coverage of hemophilia and complications such as HIV infection. Although a recent tax increase effective just a couple of weeks ago is aimed to remedy this problem in the short term, there is great uncertainty whether this barrier can be effectively reach in the future. The State's Hemophilia Assistance Program for adults is also grossly underfunded with just $250,000.00 annually appropriated for all hemophiliacs in the State of Texas. This is hardly enough to provide meaningful assistance for three or four patients much less the several hundred who require health. Moreover, the adult program covers only the cost of blood products and does not provide ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 li 12 13 14 15 16 17 18 19 20 21 22 23 24 25 215 for assistance for AZT, immunologic testing, hospital charges, etc. Cultural barriers also exist for the hemophilia population. These individuals often have no one to talk to about their condition. They can't go to their friends, neighbors, teachers or associates and discuss openly their fears and concerns. What about support groups and governmental agencies? Unfortunately for the hemophlia population, most such groups focus primarily or exclusively on the gay population or other individuals such as intravenous drug users. Moreover, until recently, most AIDS/HIV support groups in Dallas and other communities have not included children and adolescents and their families. Many of my patients with hemophilia and HIV infection exhibit an intense anger toward the gay community, in a sense blaming them if you will for their new affliction. Therefore, it's impossible it encourage these patients to participate in support groups that include these other patient populations. Related to these cultural barriers are ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 216 several psychosexual ones. Most of our HIV-infected patients are adolescents and young adults and many of them are sexually active. The transmission of HIV to their sexual partners is a potential problem of great magnitude. Several studies have shown that ten to twenty percent of the sexual partners of hemophiliacs are infected with HIV. And according to the CDC, over fifty such sexual partners have already developed AIDS; and on too many occasions, the virus has been passed on to the unborn children of hemophilia couples. The need to counsel these patients and inform them about the safest possible sexual practices is readily apparent. The degree of stress and anxiety faced by these patients has been overwhelming resulting in problems in forming and maintaining stable relationships. Moreover, the advice that pregnancy be avoided has added another dimension of stress in these patients and their spouses who strongly desire to have children of their own. An additional barrier for these patients and their loved ones relates to inadequacies in the professional support systems available to ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 il 12 13 14 15 16 17 18 19 20 21 22 23 24 25 217 then. During the past twenty years, the main health care providers for hemophiliacs have been pediatric and adult hematologists like myself and other professionals whose orientation has been toward bleeding difficulties and muscoloskeletal complications, not HIV. Those of us who received our training in hemophilia before the HIV epidemic were ill-prepared to deal with complex psychosocial issues in adolescents and young adults, human sexuality, risk reduction, management of infection, etc. This has put the patients and their families ina really difficult situation, Since the doctors that they have counted on most were ill-prepared to deal with their needs. Now, fortunately, some progress is being made in addressing the outstanding adequacies in the professional support systems. REV. ALLEN: About one minute. MR. BUCHANAN: Okay. An infusion of funds from the CDC and Office of Maternal Child Health to the network of federally-funded comprehensive hemophilia treatment centers has been allocated for HIV education and risk reduction. This initiative has allowed for an ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 218 assembly in centers such as ours of a team of psychosocial professionals skilled at dealing with HIV and at educating hematologists and other classical hemophilia care providers about these new and overwhelming problems. The hemophilia centers have begun to form effective linkages with community-based organizations, governmental agencies and support groups in order to bridge the knowledge and service gaps. The last barrier I wanted to mention is geographic. In the two hundred thousand square expanse of North Texas, many of our hemophilia patients live on farms, ranches, and in small towns many hundred miles away from Dallas. Many of them, especially adults, remain in the closet too afraid to be identified as a hemophiliac or to be tested for HIV and often unaware of the dangers in transmitting the virus. It's not feasible for them to come to Dallas on a routine basis. Fortunately, there is an effort underway to begin to provide outreach to this patient population. So, I think some progress is being made. And in my own opinion, in order to ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 219 eliminate some of the barriers that I have addressed, we must address continued education to the unique needs of the hemophiliacs. And I believe that the highly successful model programs for comprehensive hemophilia care across the nation should be used as a structure to expand HIV support and treatment programs. And I think that providers of services to patients and other risk groups could benefit greatly by carefully examining the hemophilia model and applying its multidisciplinary approaches to other risk groups. REV. ALLEN: Thank you. Before we have the dialogue time, there are two individuals that are not here at the moment that are scheduled to be here. I believe Henry Masters and Don Maison both are not here at this point. We are going to go on and to do the dialogue time. And perhaps, if they arrive later in this time frame, we can have a chance to hear them. I just wanted to be clear that we want to be sensitive to those that we have scheduled. Unfortunately, they're not here; but it's very fortunate for us that you all are here. So, we want to have the time for questions and answers at ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 220 this point. Are there any questions? Don. MR. GOLDMAN: Thank you. Dr. Wisniewski, you have referred to the needs for additional funding and the inadequacies of the systems that you're forced to operate under. To what extent does your state and local communities provide a reasonable response in your judgment to the needs that you have? MR. WISNIEWSKTI: On the local community level, the budget for public health in local New Orleans is very small and in essense funds a few programs that are RIV-directed primarily through DC funds that go to prevention and education. Our whole setup in Louisiana and New Orleans is that public health care is largely funded by the state. So, you're really looking to the state system for the level of support and commitment. The budget that we received from the state -- the first budget that was allocated was two years ago and that was at a level of $870,000.00, with some willingness to pick up some AZT costs. But the only planning and funding for AIDS care really went to one place and that was ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 221 one clinic. There has been no impetus to look at funding services elsewhere. And, in fact, the level of the budget has remained the same since. So, we've been heavily dependent on the federal grants and Robert W. Johnson grants which are expiring this fall. MR. GOLDMAN: Do you think it's fair for different levels of governmental agencies to expect that other levels of government agencies will join with them in partnerships and that it's reasonable for the Feds to expect that there will be some state funding and vice versa and there will be local contributions to the process as well? MR. WISNIEWSKI: It seems very real, but I think you've heard some of the testimony this morning from Ms. Lomax. The reality for the projects and project directors and people up on the frontlines is that that doesn't exist. And besides our impetus from the bottom up, we also need the federal push in a way to ensure those kinds of partnerships in cooperation if indeed it seems reasonable. REV. ALLEN: Let's stop the ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 222 questioning since we just started it and go ahead and have the testimony from Henry. It's good to have you back. Henry is from Arkansas Department of Health. DR. MASTERS: Arkansas, as you know, is a rural state. We have a population of about two point four million. And one of my concerns is that since the frustration is that, I do not believe that we have the tools that are necessary right now to adequately target a specific population and to actually monitor the infection in our state with AIV. I'd just like to give you some background overview and then express some of my concerns with regards to barriers for effective control and prevention of HIV in Arkansas. We have had three hundred twenty-two Arkansans who have been reported with AIDS since 1985. Sixty-two percent of these people are already dead. We have an estimated seventy-five to a hundred persons who returned from other states and are now residing in Arkansas. The number of people, of course, in Arkansas with HIV infection are expected to increase. In fact, we estimate there are about ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 223 four thousand people currently living in our state with HIV infection; and we expect this number to increase to about seventy thousand by the next eighteen months. As of June 1990, we have had more than seven hundred people reported to our health department who have positive HIV antibody serology. HIV antibody reporting in Arkansas is required by law and has been required by the State Board of Health since 1988. We have five counties in our state that contain thirty percent of our state's population, but sixty percent of the AIDS cases. We are in the early phase of the epidemic. Recent analysis of sixteen thousand four hundred ninety blood specimens that were obtained during 7 blind HIV antibody survey of child bearing women reveals a very low seroprevalence rate of point zero five five percent. When we stratified these people who were tested by race, white persons, nonwhite, we saw a marked disproportionate impact on nonwhites in our state as well as greater risk for infection. Among nonwhite childbearing women, it was ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 224 twenty-one point four times greater than for white women. And that's one of the highest levels that I'm aware of, During each successive decade -- and I think it’s extremely important that the Commission understand the relationship between syphilis and HIV infection because it has a very marked impact on minority communities, particularly those in Arkansas. During the successive decades, the annual incidence of syphilis in the United States has steadily declined at about two percent per year until about 1986 when we had a one percent increase over the preceding year and that was followed by twenty-six point eight percent increase the year after that, 1987. So, the syphilis in this country is resurgent. In fact, I've calculated the accumulated excess cases of syphilis from 1986 through 1988 and get a figure of around eighty-eight thousand cases. In Arkansas, syphilis morbidity, the resurgence of it, has really paralleled that which is coming in the United States as a whole. I was looking at syphilis and HIV ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 225 infection in Arkansas to try to get a better handle on where we should target our prevention activities and what barriers there may be that exist. By analyzing fifteen thousand nine hundred eighty-eight specimens in which the physician who submitted the specimen requested HIV antibody and syphilis serology, we found a very high statistical association with syphilis and HIV infection at least marked in the blood specimens. We don’t know if the infection of syphilis is new or old however. P value is highly Significant. And we look at specimens obtained from patients who use our public clinics, five percent of our people who testified positive for syphilis had also HIV infection. And when you look at the people who had HIV infection, twenty-eight percent had positive serology for syphilis among our public. Many of the risk behaviors that place a person at risk for HIV infection are the same for syphilis. And despite the availability -- and this is what worries me. Despite the availability cof good diagnostic tools and curative medical therapy for syphilis, it is still resurgent in ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 il 12 13 14 15 16 17 18 19 20 21 22 23 24 25 226 this country and in Arkansas. And the greatest impact has been borne by nonwhites. It’s likely that unless the barriers to effective control of the current syphilis epidemic are identified and renewed that HIV infection rates across the country will accelerate. And the greatest impact is going to probably be felt by the minority communities in this country. REV. ALLEN: Henry, you have one more minute. DR. MASTERS: Okay. We are operating right now with a very crude surveillance system. And I think what we need to do is one of the barriers at least for prevention is to be able to identify target populations. Any time a state like ours has a level of low seroprevalence rate is discounted in terms of being in need of resources. I think that a better use might be made of using, for example, surveillance techniques that we utilize in our state. Inmates are voluntarily tested. Most of them choose to be tested and we also have a blinded study. Inmate populations have about a -- an AIDS case rate that is five times higher than the ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 227 general population. I think by seroprevalence data possibly on inmates entering our systen, that we could perhaps gain better ideas of -- detect better changes in prevalence over specific geographic areas. We have used this technique in the area of tuberculosis and we were able to identify geographic areas of our state, one county that had a dramatic increase in tuberculosis. The other problem that I want to mention, and I've got probably ten seconds left, is literacy. We have low levels of literacy in Arkansas. The literature in the America Responds to AIDS Campaign, one pamphlet entitled How You Won’t Get AIDS is targeted or has a readability level of ninth grade. Sixty-eight percent of the people who are at high risk in our prison systems are reading at the sixth grade level or below. I think we desperately need appropriate educational materials that are appropriate for people who have low levels of literacy. Thank you. REV. ALLEN: Thank you very much. Now, for anymore questions from anyone on the panel by the Commissioners? ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 228 MR. DALTON: First, just a brief question for Dr. Masters. You indicated Arkansas has had mandatory HIV reporting since 1988 I believe. DR. MASTERS: Yes. MR. DALTON: Have there been any attempts to study the impact of mandatory HIV reporting as against the period prior to 1988 on people coming forward for testing? DR. KONIGSBERG: Is it with names or without names? DR. MASTERS: It is by name and address. I have actually tried to look at it and what I've done is using our state data base, all the specimens that come to our lab for processing, some of them are obviously coded. The names are coded with alpha numeric codes or just a numeric code. And I looked at the seropositive rate between specimens that we received over all different codes versus those that were not coded as far as I could tell. And there isa statistically higher seropositivity rate among specimens that are submitted coded ina fashion that you cannot identify the individual. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 229 Although we do have reporting by name and address, if the specimen comes to us in a way which we can’t identify the individual, we still go ahead and process the specimen and also we are not able to contract tracing obviously. Partner notification. However, we do have two anonymous testing sites in our state. And so, we have tried to minimize the impact that mandatory reporting by name and address might have. This was a law that Was passed in our state, but some of us were not real happy about it. But apparently, people are finding ways to be tested without identifying themselves if they don’t feel comfortable. MR. DALTON: And you're simply trying to change your views that those that go through the anonymous system or find some other way of being tested without being identified by Name and address tend to be more seropositive? DR. MASTERS: Right. Statistically, significant. MR. DALTON: Okay. I’ve been accused of prior to meet with the commission of Dr. Beatty. And this is a wonderful panel for that. So, we can sort of sit back and relax for a ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 230 second. Actually, Dr. Wisniewski, in your testimony or prepared remarks, your point four, you talked about the need to somehow try to make doctors more sensitive to psychosocial kinds of issues. And complaining that physicians and hospitals need to be taught and reimbursed for working with human services organizations and the reverse is also true. And then persons who fail to translate between such diverse groups should be sought and promoted. I guess I wasn't sure what you meant by that or sure what it would take to train doctors to be sensitive to psychosocial issues to engage in counseling and the like. One way of putting the question to Goctors that, in fact, are retractable. Certainly, in my experience, it's difficult not only for someone other than myself in the legal profession, but even for other doctors to get doctors to come forward for in-service trained even around the scientific aspect of AIDS, much less the fact that those were -- Dr. Buchanan was good enough to say that he and other doctors involved in hemophilia were really kind of ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 231 blindsided by this new disease insofar as required things like dealing with sexuality and Psychosocial things and the like. I guess I wondered what can be done about this problem. MR. WISNIEWSKI: Certainly, this is a problem that's being struggled with in many ways in programs funded such as the ETC’s are finding that that is indeed true. I think we have to look at a number of practical things that might be brought to bear. One that strikes me is that case management systems do look at funding into disciplinary teams, meetings between various professionals; but in some systems, they don't necessarily stipulate that they need to be physicians. If that were made to be a requirement, both the physicians could be enticed somewhat by that financial mechanism as well as just the interchange that begins to happen when you put that professional in a room with others 1 think could be brought to bear. Another issue I think is that we need to look at how and to which group of physicians we ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 232 fund and give authority over some of the AIDS programs. I'm impressed by what I see some of the developments along primary care, general practitioners, general internists, pediatricians obstetricians, people who have some of the skills that were mentioned. These are people that need to be put in leadership positions for this epidemic. And I think these are within the physician group translator types of people who can educate their physician peers about some of these very sensitive issues. A physician's going to listen to a physician before they will listen to somebody else. So, I think those are a couple of ways of attacking the problen. MR. DALTON: Though as I understand, the hierarchy within the profession you may not -- well, those may not be the people at the top of the internal hierarchy. MR. WISNIEWSKI: That may not be true, that’s right. MR. DALTON: Dr. Buchanan, do you have any thoughts about that? MR. BUCHANAN: Didn't have anything to add. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 MS. DIAZ: I’d like to ask Dr. Masters and Mr. Fuentes a little bit about your last thought, Dr. Masters, regarding the American Response to AIDS educational program. You hit on a very interesting point because not only is that appropriateness in the literacy issues an issue that we have struggled with in the minority communities, but also the Fact that many of these Mexicans really can be impacted and creative with the kind of sensitivity Wisniewski talked about in his remarks. I'm just wondering if you could elaborate as to some kind of thought you have. It's interesting that a person with STD and AIDS perked up your level. Is observing that kind of thing as having an effective weapon for reaching so many of our people, but I got a common thread from both of you that you feel that the communication to the targeted publics, particularly minority communities, really needs to be much more refined in terms of things you're talking about. And I'm wondering if you have some thoughts and comments about that. DR. MASTERS: Yes, I do. I got my ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 234 sensitivity to this issue while I was Medical Director for Department of Corrections where so many people are in the system. And when I saw the literature for the America Response to AIDS Campaign, I realized that many of those people would not be able to understand it. We have the technology right now to mount a very aggressive campaign for people who have low levels of literacy using portable computers that have graphic animation, body of interfaces. We could teach people about HIV infection and other diseases, diabetes, hypertension, etc., and do it ina way that they would not even have to use a keyboard. They could even touch the screen. We could, if we wanted to, learn something about the knowledge, attitudes and beliefs of behavior of people who have low levels of literacy. Virtually, nothing is done. And it’s very difficult to tailor education materials when you have no data base from which to operate. Right now at the Arkansas Department of Health, I put together a task force that is working on a project that would make at least available to our inmates and our community health ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 235 center clients who also have low levels of literacy a system by which they could learn. And we would have a way of tracking changes in their responses to questions over time using computers that generate images that are animated and audio. And I think that we need assistance from other people in a project like this. I think it’s of importance since there are so many people in this country who just are functional illiterate. MS. DIAZ: You're not aware that the National Red Cross just completed a project on HIV education for Hispanics that is just totally visual, nonwords at all. So, you might want to make contact while you are developing yours; but it is something special. MR. FUENTES: We deal mainly with the preliterate and the illiterate and also there's the population that my colleague was talking about with individuals with a sixth grade educational level or less even if they're English speaking. And we use a lot of cartoons. We use a lot of photo stories. And we also kind of just put the literature outside. We don’t use ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 236 literature as the main tool. We go into their homes. We go into this community groups. And we do a lot of talks. And we just sit down and first let's discuss it. Okay. Let's not put the pamphlet between us. Okay. And I assure the individual that, yes, you’re going to get something to take home and read. Also, the terminology that we or the lingo that we're used to using like homosexual, bisexual. They don't understand it. If you call them homosexual, they just call you that back, okay, because they think it's a curse or something nasty. So, we have to simplify all this terms. You know, for us HIV infection, oh, yeah, everybody knows about it. Well, for them, it's not. You have to just go back to the basics and explain how the new system works and how the virus is transmitted and also use stories from your own community without names, of course. But, you know, bring it home. MS. DIAZ: Thank you. MR. DALTON: Let me pursue where you ended up in your remarks. You quite correctly said it's appropriate for people who want to do ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 237 something about the AIDS go to the experts mainly those who are directly affected. But I’m not sure where to go from there. Among other things, you said observe many things including people's phobias. And I guess my question is ~- and then you came to the helping sex. We should help by observing phobias within your community or my community. Since we have to do more than observe or someone has to do more than observe, I'm just curious what you would suggest are ways in which we can deal with various phobias within our community including homophobia. MR. FUENTES: Well, the phobias are going to be there. It's going to be very agifficult for us to break through this barriers. The barriers are going to be there like it or not. Same thing with revision. We work with a bishop in the Houston area. You know, he -- I have to respect his principles and he's going to have to respect mine; but we work around this. You know, be aware that the phobias are going to be there. The homophobia and the AIDS phobia in the community. So, you have to just respect that and work around that particular ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 238 point. MR. DALTON: I respect there are sometimes ways of working around, agree to disagree and moving on from there. I guess my question though is: Do you see any way to, in fact, alter some of the phobias? MR. FUENTES: Well, just by being there, by being a friend, we're -- you know, by just not dwelling on it simply because in the Hispanic community, you're not talking about -- or from the Hispanic community point of view is that sensitive issues, you don't talk about it. But again, by respecting their points of view, by being there regardless of their denial, you know, slowly they’re beginning to open up. But you don't shove it down their throats. It’s just like, okay, we know that your son is gay. But okay, let's not talk about it. But I'm going to be here regardless. I'm going to go to the hospital, call me any time; and I'll be there. And they're beginning to realize that sexuality and AIDS is not the issue. Humanity and morals is the issue. And you are the friend that they need. And then before you know it, you got ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 239 them in your hand. MR. DALTON: I guess I wanted to ask a related question of George Buchanan. You had mentioned that often times hemophiliacs don't have support groups, people they can talk to about what they're going through, and particularly, I guess HIV-infected hemophiliacs. And then part you said it was because many hemophiliacs are angry with the gay community because they feel that the latter are responsible for their disease. I think it doesn't necessarily have to be the case. One of the things that struck me by the commissions in the South of Georgia was that there was support groups there that were multiracial that involved hemophiliacs as well as IV drug users as well as gay men and people who were some combinations of those. Maybe that's unusual. It certainly is much more uncommon and likely effective that a system of support groups is -- different support groups of different people. But I guess my question is: Have there been efforts to your knowledge within the hemophilia community in Texas to deal with that ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 16 i9 20 21 22 23 24 25 240 particular set of understandable particular anger and but nevertheless to move beyond or again is that one of those things that you sort of accept and work around? MR. BUCHANAN: I'm not sure that we accepted it or are happy about it, but we'’ve made some efforts working with our hemophilia population to establish some linkages with them and some of the local support groups that, you know, usually are linked to one of the gay agencies. We just had some difficulties in getting agreement and willingness to go. And, you know, a lot of these young men needed some help and needed somebody to talk. Where we have been successful I think more in the last year or two is establishing support groups in the center and in the local chapter of the National Hemophilia Foundation. That at least is effective for a smaller number of patients and couples with that that are effective. But we have not been able to make any progress like what you mentioned in Georgia. I don't know what the lay of the land is in Georgia. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 241 MR. DALTON: I suspect -- I was quite curious about Georgia. It may just be the folks were all together and banded together because there was no support for anyone other than others who were also infected. That may be the Quasimodo approach to support. REV. ALLEN: Don, you had something you wanted to say. MR. GOLDMAN: Is there an adult program? MR. BUCHANAN: Yes, there is an aduit progran. MR. GOLDMAN: And that's where? MR. BUCHANAN: It's also at our institution? MR. GOLDMAN: Which is? MR. BUCHANAN: University of Texas Southwestern Medical Center. MR. GOLDMAN: Is that the same as Parkland? MR. BUCHANAN: Parkland is one of the hospitals in that complex. MR. GOLDMAN: Could you talk for a moment about the transition and what the problems are with the transmission between the children and ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 242 adult programs particularly in terms of the economic and social barriers that are involved and some of the funding patterns? MR. BUCHANAN: Sure. I think it's a good question. I think until recently, roughly three years ago, we really didn't have too much of an adult program. Adult hemophiliacs could come to the center, but there wasn't a physician particularly interested in it. There wasn't a multidisciplinary program like we had with children. That resulted, I think, in part ina lot of hemophilia population in North Texas among the adults being dispersed among this or that private physician and this or that clinic or institution and no real progran. Now, that has changed. We have received funding now for a Full-time adult hemophilia coordinator who is interested in it now. So, that now the transition -- it used to be a very adifficult and unwielding one for me and some of my adolescent young adult patients who get used to coming into our program for years and years and felt comfortable with it. They felt that sometimes they were being cast out to the wolves when they turned twenty-one. And then ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 243 particularly, with HIV on top of that. Now, instead of coming to pediatric hemophilia program which also dealt with AIDS education, now they were going to the county hospital to the AIDS clinic for their HIV-related care. And that's been changed fortunately. So, I think that’s better at least for the patients in Dallas who identify themselves with our hemophilia program. The problem is the patients out there in Fort Worth and Amarillo and Abilene and other cities in the distance. And that's where we're still having some problems. REV. ALLEN: Larry, you had a question. MR. KESSLER: My question is for Mr. Fuentes. Considering the tension we've heard about and we've seen all over the country actually between some of the ethnic and racial groups between the various levels of culture, cultural groups and then the gay community, what’s your feeling about the impact of the pending demonstration that I had read about last night at the Cathedral in Houston? I was trying to read between the lines there and I got anxious about what that was going ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 244 to do, but I'd rather hear from what you think it's going to do to the relationship between Hispanics and the gay community in Houston and the AIDS movement in general. MR. DALTON: Larry, what is the Gemonstration you're referring to? MR. KESSLER: There’s an Act-Up demonstration at a Cathedral. And apparently, Houston has a Hispanic bishop. I thought that was sort of a very interesting dynamic, and it's around AIDS, abortion, women's rights. And there’s a fourth issue, but I'm not sure what it was. MR. FUENTES: The Bishop San Pedro. It’s against him. He is also a board member of the Greater Houston AIDS Alliance. And this Act-Up Houston group is trying or -- were asking for his removal. And I think -- personally, I think it's a move, a wrong move here because again he might not be presenting the church views; but as an individual, he’s trying to build inroads into the disease, into the fight against AIDS. We have a lot of political problems as probably everybody knows in Houston. And since we ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 245 got three main political bodies which is the city, the county and now another one, the Alliance, it's a lot of struggle between agencies, between groups. But I've been learning all along the way and again, it's by observing what others are doing and by learning their mistakes is like it or not, we have to work together. We have to just, you know, kind of just say, okay, you know, slap my hand. I’m sorry. But let's go back and have at it again. We're working with the AIDS Foundation with gay and lesbian Hispanic groups. We're working with lesbian Latino groups which are very a they're kind of just it’s not our problem type attitude. But again, we have to work together. There's no way that we're going to be able to pull this alone. And so, there's a lot of friction and we have a lot of cultural barriers, a lot of cultural differences; but I think again by observing, by listening, you can very easily switch from one track into another. We got a powerful mind, and you don't have to just design a program for Salvadorans or ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 246 design a program for Mexicans or Mexican Americans. No. Just be careful when you’re addressing this population. You can use exactly the same tool. Just make sure it is not offensive to any of those individuals. But how you present it, it's very important. So, you got to be sensitive. You know, Bishop San Pedro and myself have workea together on a couple of programs already, believe it or not. And I just go to church when one of our clients dies. You know, I'm being honest. And he called me up one time and he said, well, let's do an educational progran. And here, I got all my condoms and lubricants and syringes and bleach and all that. And then I got to the church on a Sunday and I said okay, where do I set up. And he said outside. Okay. And I said fine. You know, I was really thinking that it was a miracle happening there and he was going to let me do it inside the church. But again, you have to work with the tools that you have. You know, I was glad. I was outside the church. He was inside. He was preaching morals. You know, I was preaching, you know, protection now. And he ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 said okay. MR. KESSLER: Sounds like a minor Miracle anyway. At least you got on the ground. MR. FUENTES: He’s a realistic man. He knows that morals are not going to stop it now. It's going to be a long-range job and he’s working on that. But I also tell him hey, give me a chance. We need to stop it now. So, let's work together in parallel. Let's not cross the roads. It took us a while. MR. KESSLER: But in terms of this particular action, is it going to help move him? Is it going to set back relationships or do you think it’s a wash? MR. FUENTES: I don't think so. think this group -- first of all, Act-Up Houston is very politial. It's not supported by the community nor the gay community nor the general community because on Sunday there was a demonstration and we had a curing demonstration in downtown Houston. And our demonstration was about two thousand people. And we were just asking, you know, cure AIDS now. Allocate more funds. There was two thousand people. On this Act-Up ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 248 demonstration to remove the bishop from the alliance board, there was probably about ten people that demonstrated. So, that tells you. MR. KESSLER: You've already had it. It’s already occurred. MR. FUENTES: Yes. It's over and I don’t think it's going to have any consequences. DR. KONIGSBERG: It got a lot of TV play. That was the main thrust of the story. REV. ALLEN: Any other questions? MR. DALTON: Just one last question for Ted. You indicate in your testimony you said early intervention is perhaps the single most important reason for our systems collapse. At our round table yesterday, one got the impression that there is no early intervention yet. I was curious what you meant by that statement? MR. WISNIEWSKI: I have a question and comment to this work group as well regarding early intervention. So, I'm glad you asked that. In our program in New Orleans, we've been doing, in essence, what is now recommended Since about 1987. But there's a sharp increase in demand for those monitoring and beginning early ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 249 AZT treatments by a very large population. It strikes me that the task that's just ahead is to combine or take a good hard look at what we've talked about today with what was discussed yesterday. Because this, too, has got to be worked out and it's got to be worked out soon. I guess my question or comment is and it comes out of a sense of urgency not just to this working group but to the whole commission. It strikes me that perhaps we could have anticipated this about a year ago. It seems that the CDC data, the NIH clinical data about the efficacy of the drugs and some of the things we were learning through the services demonstration projects, we probably could have sat down and anticipated what we're living with right now about a year ago. And it seems that a real challenge to you is to look at speeding up that kind of interagency dialogue that needs to happen and drawing frontline people who are experiencing that frustration into helping translate federal guidelines or initiatives into what’s really needing in terms of the progran. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 250 And I just wanted to encourage and push this work group as well as the others into exactly that kind of thinking and strategy. REV. ALLEN: By any chance, do you have something to say to that, Charlie? DR. KONIGSBERG: I think that very skillfully sums up perhaps the whole purpose for the two days and I hope our report maybe when it is written would kind of sum up on that note. You know, we can make that case with a lot of federal policies; but in very few cases had they done what they did with HIV which is saying this is the standard of care. There are other instances. It's been done with, for example, the second measle shot set the standard of care. And I've used the same terms which is a strange one in public health, but I've used it in clinical terms and then not backing it up with the money to do it. That’s small compared to this situation, but I think that's a terribly important point. REV. ALLEN: Any other questions? If not, I have to remind you all that if you would like to make comments during the open-to-the-public comment time, please sign the ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 251 form in the back. Again, it’s going to be three minutes for each individual that would like to state something. So, we'll take about a fifteen minute break. (Short recess.) REV. ALLEN: I would like to make a change in the schedule of the summaries of today's proceedings. The Commissioners have asked Jeff to put that in writing. And due to the airplane schedules of the Commissioners, most of them are going to have to leave right after the comments from the public. So, that's one change in the schedule, first. And then Don is going to keep the time for us for three minutes a person. That will be just about the time allotted. So, the first person on the list is Margaret Gallimore. MS. GALLIMORE: My name is Margaret Gallimore. I’m the Director of the Mathis House. I have been running the Mathis Hospice House, whichever one you want to call it. I sent out for my nonprofit and it came back hospice, not house, what I originally named it after. But my whole point in being here that I ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 252 know for a fact that I take care of PWA's in my home that I rent to take care of the PWA's. I have never had a grant. I do it on my own. The organizations in Dallas -- if you want me to name, I will name them -- I'm known for Names, and I will point the finger. But it is true what the doctor who was sitting here in this seat -- I couldn't see his face -- was saying. It just revolved around just the gay community. If you try and get into it -- 1 don't discriminate because I have everyone. I take care of black, green, purple, Hispanics. I've gone to Houston. I took a film at my house to show them there where and how to do it. And I flew back. I don't get any funds. Why is it taking them so much money for Dallas to have all this funding, not other states and the money and not be seen or not any have it coming to me and I am the only person in that house? The ones that's dying on my own. So, whether the three minutes is up -- put me under a lot of pressure. REV. ALLEN: We weren't going to have comments, but if you didn't use up all your three minutes, we can have comments. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 instance, that agency, AIDS ARMS. there called the family. the guy lived five days. arrangements, So, And they went and upset the family. I'm very upset about it. 253 Do you have a licensed MS. DIAZ: hospice? MS. GALLIMORE: Yes. MS. DIAZ: How many beds? MS. GALLIMORE: Six. MS. DIAZ: Full? MS. DIAZ: That is correct. MS. DIAZ: How do you get your referrals? MS. GALLIMORE: Beg your pardon. MS. DIAZ: How do you get your referrals? MS. GALLIMORE: From Parkland Hospital. Well, now I'm going to have to call Names. In fact, this last past week, a good for a very bad situation came up. And Buck Buckingham is the manager of The person that worked The guy hadn't died. The mother's flying in here thinking that her son is dead and But she called and asked if the person wanted to go make funeral but didn’t ask how the patient was. That's INC. ELLIOTT & BROWNLOW, DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 254 cold-blooded. MS. DIAZ: Do you serve primarily blacks and Hispanics or all? MS. GALLIMORE: No. I've always -- I've had less -~ because that's what I'm saying. I've had less blacks than anything. I've had lawyers, doctors, designers, the whole nine yards. One guy owned his own island. But when everyone takes what he has, well, then he don't have anything. MS. DIAZ: How do you fund yourself? MS. GALLIMORE: Me. That's what I’m telling you now, I’ve never had funding, but I also don't get -- whenever you go to the hospital or whenever I'm called there, Parkland calls me, you don't cut off your nose to spite your tace. That's their only means of getting -- whether you’re rich over here and you can afford to go to a private doctor. Fine. You go to a private doctor. But one day, if you have the virus, you're going to get sick and down and out. Just because you're up and your friends may be supporting you, when you get down where he can’t ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 1 | hound you anymore. 2 REV. ALLEN: Let me say this 3 | Margaret, if you would like to submit written 4 | statements to the Commission, they can be 5 | incorporated. Unfortunately, the time is up; but 6 | your input in the Commission is not -- if you 7 | would like to write down your comments, it can be 8 j submitted into the record. 9 MS. GALLIMORE: Are you going to 10 | put it in his hand? 11 REV. ALLEN: Excuse me. 12 MS. GALLIMORE: Are you going to -- 13 | when I mail off things, that never get there or 14 just like the organization. 15 " REV. ALLEN: It'll get there. 16 MS. GALLIMORE: I didn't get the 17 | call. It was a volunteer. I said well, then you 18 should fire the volunteer. 19 REV. ALLEN: Well, submit the 20 | testimony, whatever you would like, in writing. I 21 just wanted to be sensitive to the folks here that 22 | have signed up to give them the equal amount of 23 time, but your comments can continue on and the 24 dialogue can continue on beyond this point. 25 MS. GALLIMORE: Thank you. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 1] 12 13 14 15 16 17 18 19 20 21 22 23 24 25 256 REV. ALLEN: Don Schmidt. MR. SCHMIDT: I won't even use all my three minutes. I just wanted to tell you -- I want to talk a little bit about the conspiracy of silence. I believe the first time on your agenada anywhere in this country that anyone talked about the issues of dying with dignity in terms of physician-assisted death was raised by me earlier today. I was really --~ this was never raised to the previous commission, never discussed in none of their decisions. I felt it was appropriate to raise it today because we have seen recent polls in Time and Newsweek seeing that the majority of Americans believe that those with terminal illness may -- should have an access to physician assistance in this area. And I think the time is right to talk about what we know has been a major issue for a minority of those with terminal illness in this country across the board. And clearly, in my experience some folks choose voluntary euthanasia. I think you cannot avoid talking about ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 this. I believe if you're not going to do it in this context of social and human services, I would strongly encourage you to do it in bioethics specific hearing at some point. I would hope you don’t get through the rest of your year plus and avoid this issue. L don't expect we're going to resolve it. We’re going to hear from the docs and the legal barriers, but we need to get it on the table among the other issues talked about in terms of barriers because it is a barrier. You're talking about living and dying with AIDS. And it’s a very significant barrier in the process of dying from AIDS. Thank you. REV. ALLEN: Gary Swisher. MR. SWISHER: I wanted to thank you for allowing me to take this time. I'm Gary Swisher. I’m the Director of Health Services for Oak Lawn Community Services here in Dallas. Thanks for listening so compassionately the last two days. I don't envy your position of making recommendations and taking those back and turning them to the powers that be. There's an issue that I'd like to touch on that -- actually, I'm going to be echoing what ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 258 you've heard from Ted. And I can't say Ted's last name either. But one of the issues is the lack of leadership that we've seen. Now, HRSA has done some very good things. They stepped over the sides and worked hard to get RWJ and combined that with one of our demonstration programs. What I have not seen on the federal level is the consortium and the sharing and the coordination. Where is NIMH? Where's NIH? Where is AmFar with their programs? Why are they not taking what has been done in the last few years? Demonstration programs have been funded. They have been demonstrated. They have been proven that they're effective. It's time not to stop demonstrating, to implement those programs and not create new demonstration programs for new departments to be funded, to be tested all over again. I think you'll find that Texas itself is a third world state in the way that we act politically. And we are not the most progressive, but we are also a very resourceful community. And that's in the gay communities, the minority communities, racial ethic minorities and all other ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 259 surface providers. And what we have done is try to organize and share and provide technical assistance among ourselves and we have not seen it from anybody else. And there's an organization I'd like for you to be aware of called Texas AIDS Network which is a statewide body comprised of eight service providers, coalition of PWA’s, local and county health departments and many, many, many interested individuals that has done a lot of work on the past two years to address the specific issue of HIV education, funding and services. And I think if more of the Federal Government would look at what's being done on the local level and following that example instead of giving examples for the local level to follow, we might be a little more progressive. Thank you. MS. DIAZ: Thank you. REV. ALLEN: Drew Dixon. MR. DIXON: My name is Drew Dixon. I'm with the Association for Retarded Citizens. I'd like to ask that you consider another barrier to the utilization of social and human services as they relate to the HIV/AIDS ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 260 epidemic. And that barrier is cognitive impairment. We must begin to include people who are mentally retarded and they have earned their national prevention strategy. But mental retardation is not like having the mumps. It's not a case of either you have it or you don't. An individual's level of understanding must be matched with the range of approaches. Prevention programs cannot be successful if, for example, they explain how to use a condom and tell all the goodness of that if the listener does not have a clue how to make change or take a bus to the drug store to get a condom. I put a side note that says it takes cunning wiseness to find ways of having unprotected same gender sex in congregate living situations, but that it takes two geniuses to have protected heterosexual contact in such environments. We've heard from a number of people addressing the availability of programs and the lack of availability of programs and support for local minorities. I suggest that the minority ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 261 group of people who are mentally retarded cross all ethnic and cultural boundaries. A minority group that we think so little of that we have historically isolated them in institutions or if they do live in a community, we place them in portable classrooms physically separated from the main school or other segregated settings. Further, we maintain myths, dangerous myths. Let us finally accept the fact that some people who are mentally retarded enjoy a range of activities that place them at risk of HIV infection. I understand that on the one hand, we often will have a mother who'll say you're not going to talk to my fourteen-year-old retarded daughter about sex and drugs. But I know on firsthand that we have programs whom we're teaching fourteen-year-old mothers who are mentally retarded how to care for their child. Obviously, the answers will not be easy but we must at least start asking the question. Being so limited in time, I've only addressed the question of prevention. I hope that ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 in future hearings, you will consider complex questions of how to provide services for people who are mentally retarded or have other kinds of impairment and are HIV-involved. I, of course, assume that you already have some ideas and plans to ensure the quality, not quantity of life for the children who have AIDS. It's important to note that it's been estimated in the next four years, AIDS will be the largest infectious cause of mental retardation in children under the age of thirteen. Thank you very much. REV. ALLEN: Thank you. May Pasquet. MS. PASQUET: My name is May Pasquet. I'm a Registered Nurse and I'm Director of the Infectious Disease Clinic at John Peter Smith Hospital in Tarrant County. John Peter Smith Hospital is the leading provider for indigent care in Tarrant County. I would like to speak today in support of human service organizations that pay a most important role in the care of our patients. Tarrant County has reported five hundred and eighteen cases of AIDS as of last week. Four ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 | 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 years ago, a portion of our medicine clinic was designated to provide outpatient care for patients infected with the HIV virus. At that time, we saw two to four patients per clinic per week and followed a caseload of twelve patients. Today, we limit forty-five patients per clinic and provide care for a caseload of three hundred and fifty patients. Men, women and children. One hundred and forty-six of these patients receive AZT, eighty-two receive prophylactic Pentamidine and we average eight patients in-house each day hospitalized for AIDS-related infections. The average daily cost for care in the inpatient setting for a patient admitted with AIDS-related diagnosis is $654.00. Compared to another patient admitted with another diagnosis, it is $443.00 per day. Due to limits in inpatient beds, our focus has been on outpatient care and the prevention of inpatient initiation because of limited funding in the public hospital. We have somewhat succeeded in this prevention of multiple hospitalizations for our patients through the development of many programs like case management, ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 264 development of IV procedural labs where patients can receive on an outpatient basis IV fluids, blood transfusions and antibody therapy, antifoamal therapy. But along with many other organizations, we're at a limit; and we are now requesting additional tax dollars from our county commissioners to continue to provide safe care. But our limited success would not have been possible without networking with many of the agencies and organizations like those represented here today. The need in the hospital setting is overwhelmed, but it does little good to provide medical care if it is not safe and effective. It does little good to provide medical care if funds are not available for medication, if housing is not available for the patient, if food is not available or transportation to and from hospitals, counseling and a support system for the patient. It takes all agencies I believe working together for the cause and that cause has to be the patient. People are available to provide what is needed if funds were available for those to do ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 265 so. The commonality which I've heard by all speakers today comes down to the need for education, organization and money. More patients have died of AIDS than have died in the Vietnamese War. I don’t wish to sound melodramatic, but I believe it's time for our local state and federal leaders to realize that we're at war with a deadly enemy. In our war efforts, we must be <~- MR. GOLDMAN: Can you just close up. MS. PASQUET: Yes. Our war efforts must be organized and confronted because daily we are on the verge of losing the battle. And I encourage this Commission to educate our leaders before we lose the war. Thank you. REV. ALLEN: Dan Rawlins. RAWLINS: Hello, my name is Dan Rawlins. I'm Co-Director for the TD -- Texas Department of Mental Health Mental Retardation, AIDS/HIV Prevention Training Project. Keeping in mind there's no time giving an introduction, I just want to say that my background is in education and substance abuse and for the last seven years has been working with HIV ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 266 education in one form or fashion or another. I also don't want to wear any of the hats that I have because I want to complain and then I want to make an emotional appeal to you. The first thing I want to say is that you're a smart bunch of people; and I know that when people come up to testify before you, you take a lot of things into consideration. When a state agency from Texas comes to talk to you, they feel like they're on trial. And the first thing they want to do is sing their own priase about how wonderful they've done in their efforts. I'm here to tell you that what we've done, while it has been an effort, is not at all wonderful and that there are still lots and lots of things to do. In September, we are facing a real crisis with the 72nd meeting of the Legislature. One of the people on the Legislative Task Force on AIDS, as Reverend Allen is familiar with, is going to be a person who leads the fight against any kind of positive direction and AIDS education and in health services, He will stop it at all costs. With that in mind, we have our own fight ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 here in Texas. What I ask on behalf of all educators, all of us here in the audience and all over Texas is that you try to help us by getting the gags off nationally. In other words, if you can stop guidelines such as the one that came down from CDC recently trying to tell us how to tell our people in our special population what it is we can say and what it is we can't say, if you can tell them to offer us comprehensive rational and sane and standardized guidelines for what needs to be done out there, fine. Failing that, tell them not to say anything and let us fight our own fight because what has happened to us makes it far more complicated. When we can talk about condoms, we need to talk about condoms. When we can talk about disinfection, we need to talk about it. We need to get bleach out to our outreach centers. There's no point in having an outreach center that tries to talk to the street addict if you can't tell him how to prevent STD's and HIV. They’1ll listen if we can sound real; and we can't sound real if we say that there are only certain things that we can do and certain things that we ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 268 can’t do. MR. GOLDMAN: Your time is up. RAWLINS: Thank you very much. REV. ALLEN: Earl Milton. MR. MILTON: I'm Earl Milton, Secretary Treasurer of True Health, Incorporated. Our company, in conjunction with the local Dr. Terry L. Pulse, placed thirty AIDS patients on our product in a one hundred and eighty day test. At the beginning of the test, sixteen of the patients measured above the five ninety-nine on the Walter Reid Scale which meant they had full-blown AIDS. Ali of them had some decree of AIDS. After a hundred and eighty days, none were above a five. At the start of the test, twelve of the patients immune system was dead. At the end of the test, only two still was nonfunctioning. At the beginning of the test, seven were totally functioning. At the end, nineteen were totaling functioning. Dr. Pulse released the results of this at the Advanced Immune Discovery Symposium two and a half weeks ago in San Francisco. Unfortunately, the press was not present. He stated at that time ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 269 that seven of the patients are currently negative. My request to you is to assign someone to look at our test, verify it and then help us secure the funds to make this product available to the AIDS population. I would like to give you our newsletter which shows the beginning and ending Walter Reid Scale score for each of the patients in the upper right-hand corner. And hopefully, on your flight back, you can take a look at this. Thank you. REV. ALLEN: Okay. Dennis James Kidder. MR. KIDDER: Again, my name is Dennis James Kidder. I'm an independent researcher who has been accumulating data over the last three and a half years -- I'm an independent researcher. I've been gathering evidence over the last three and a half years. I have before me the appeal that maintained the sodomy laws in the State of Texas in 1983 for Baker vs. Wade. Within this document are facts that you people don't know, for reasons I do not know. I have been trying to get to Mr. Bush, President Reagan, the National Institute of Health, the AMA, ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 270 the Journal of American Medicine, our own Texas Health Commissioner. I mean I can go on and on and on. I have visited with Parkland people. 1 have been harassed by the Dallas Morning News regarding my stories. I have been investigated by the Secret Service regarding my proclamation. And at this point in time, I am telling you right now, you are dealing with a problem you have no conception of. I have some handouts here for you that are going to overwhelm you. I'm going to let you digest them, review then, annihilate them or re-present them to me for explanation. That's at your own convenience. These facts that I present before you a based on the formation of all matters, the essense of all life. And it goes from the smallest of the small to the largest of the large. And I'm talking about the parameters of Cur universe and beyond. I have resolved Einstein's Theory of Relatively dealing with the form and force of gravity. And I will just stop at this time and let you review a couple of the things. If you want a momentary explanation, I will give it. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 REV. ALLEN: This is a part of your three minutes. MR. KIDDER: I understand. I have information packets here for you. A lot of you are humored by some of the little antecdotes and jokes that prevail. There are people that are dying. There are several members of the gay community I have tried to contact. I will not go into their names. They have their own burdens to bear. Your burden now is how to handle this problen. My profession at this time is to make you understand one thing: We need the end of the ignorance. We don’t need the jokes. We don't need the comedy. We don’t need anything else, but rational factual understanding and action. Intervention prevention means one thing: You stop it; you handle it, and you go no farther. There will be casualities. There are casualities. If we continue to joke, if we ride our airplanes back to our a little offices and don't do anything, yes, in fact, we have problems. I am done. REV. ALLEN: Okay. Emerson Emory. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 MR. EMORY: My name is Emerson Emory. I am a physician in the City of Dallas practicing in the South Dallas area. That's where my office is located. I was somewhat concerned, first of all, by the apparent secrecy of the visit of this Commission to Dallas, Texas. It took me a little doing to find out just what you were going to do and where you were coming from. Anyway, nevertheless, I am concerned because daily I read that AIDS is increasing among blacks in the United States. If that is true, then I think that the black medical health care people should be involved in some of it. Instead, in the City of Dallas, and perhaps this has been mentioned earlier -- I wasn’t here -- there is no treatment facilities for blacks. Ninety percent of the black population of this city lives south of Elm Street. There is no treatment facility for blacks in that particular ninety percent group. The black physicians are somehow left out of the whole thing of treatment or care of the AIDS patients. So, I'll be very brief and say that I hope that this Commission -- I don't know ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 273 how other cities are doing it, but I would hope that you would involve the blacks who practice medicine and other forms of health care in the community in this particular problem which seems to be increasing among my group. Thank you. REV. ALLEN: Thank you. Bill Hunt. MR. RUNT: My name is Bill Hunt and I'm Vice President of the Dallas Gay Alliance. I would ask the media not to use my picture. I've lost two jobs because I'm a person with AIDS and I don't intend to lose the one I have now. I wondered what it is that I could say to this Commission to impress upon you the urgency of the battle against AIDS. And for people like myself who are told that they could die a year and a half ago. I'm still here, I have testified before our own city council, before my county commissioners twice, before our state legislature when we marched on Austin. Our county commissioners who denied two weeks ago AIDS funding for AIDS prevention information for gay men, who have denied AIDS prevention information for teenagers despite the ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 274 fact that Dallas is number one in teenage pregnancy in the United States and number one and two in syphilis and gonorrhea in the United States Saying that this information will somehow encourage them to have sex. In 1987, "89, we begged for money for this AIDS prevention information to no avail. It will be this generation of teenagers who will die of AIDS, will pay the price for our county commissioners’ ignorance. The facts still remain that here in Dallas and nationally that women with AIDS die four times faster and that people of color die ten times faster. Still, we have no prevention programs in place directed at these groups. The city and county of Dallas put together a task force called the Community Response to AIDS and studied AIDS in Dallas for almost a year. That commission report, wonderful in its recommendation, still sits on the shelf in Dallas with one minor recommendation implemented and none of the rest of then. The Antidiscrimination Ordinance and Housing Public accommodations was tabled by city council and still sits on the table. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 275 The Texas Legislature who studied AIDS recommended $36,000,000.00 for AIDS funding for this biennium. We got eighteen million over two years. We waded through while the City of Dallas did their Dallas seroprevalence survey which at best is a snapshot of AIDS in Dallas. The conclusion: It's not as bad as we thought. They can’t handle what we have already. In Dallas last Tuesday, my friend Lupe waited, waited in Parkland emergency room for eleven hours. No beds. I’m sorry. Go home. Take some asprin. It will break your fever. He has pneumocystic pneumonia. It’s preventable, its treatable; but he will not be delivered -- Parkland Hospital will not deliver aerosolized Pentamidine even though we sued them in court to make them end the waiting list for AZT and for Pentamidine. Today, the AIDS clinic in Parkland will not allow Parkland patients access to Nelson-Tebedo Community Clinic Trials for experimental drugs, even though they can't take AZT, even though we would save the taxpayers money, even though it would allow those people a chance at life. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 276 We're looking at you for leadership because when you go home, this is what we have to deal with here in Dallas. MR. GOLDMAN: Sorry. Your three Minutes are up. MR. HUNT: Thank you. REV. ALLEN: It's unfortunate that we couldn't dialogue with each one of you about this. We appreciate your persistence in staying and being a part of this because we are here and very sensitive to the needs of people living with AIDS and very sensitive to our society and how we deal with this. And it encourages us that you are here saying we support you too. We have gone around this country and there has been a lot of participation, a lot of frustration by those in the audience, by us. And we take this task very seriously. And it's painful to see the tragedy before us. And it is awesome to think of the responsibility that we have in dealing with this. And we will be continuing to do the best we can. And again, thank you for being here because it means a great deal to us. So, thank ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 you. (End of Proceedings.) ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 ' 278 STATE OF TEXAS COUNTY OF DALLAS THIS IS TO CERTIFY THAT IL, LAURIF S. KOKORUDA, a Certified Shorthand Reporter in and for Dallas County, Texas, reported in shorthand and transcribed to the best of my ability the proceedings had at the time and place set forth in the caption hereof, and that the above and foregoing 277 pages contain a full, true and correct transcript of the said proceedings. This the 19th day of July, 1990. LAURIE S. KOKORUDA, Certified Shorthand Reporter in and for the State of Texas. CSR No. 2824 4205 Herschel Avenue Dallas, Texas 75219 ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090