NATIONAL COMMISSION ON AIDS SOCIAL AND HUMAN ISSUES WORKING GROUP SEATTLE, WASHINGTON JULY 30, 1990 9:00 A.M. VOLUME I PAGES 1-171 CO VERLYN DECKERT, RPR 16442 ~ 13TH AVENUE SOUTHWEST SEATTLE, WASHINGTON 98166 (206) 244-0678 ™ COMMISSIONERS PRESENT JAMES ALLEN JOHN GOLDMAN SCOTT ALLEN JUNE OSBORN HARLAN DALTON EUNICE DIAZ LARRY KESSLER MARY BYRNES (Executive Director) VERLYN DECKERT, RPR 16442 - 13TH AVENUE SOUTHWEST SEATTLE, WASHINGTON 98166 (206) 244-0678 SPEAKER: Jon Fuller Gail Barouh David Woodring Linda Meredith David Schulman Robert Greenwald Venita Porter Sean Duque Nancy Campbell INDEX OF TESTIMONY (Volume I) P. Catlin Fullwood Jeffrey Sakuma Margo Bykonen Robert Wood Charlton Clay Dave Purchase PAGE 16 20 23 50 55 62 67 83 92 115 123 137 143 149 VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 (July 30, 1990 — 9:00 a.m.) MR. SCOTT ALLEN: Good morning. This is the Working Group for the Social and Human Issues and we are here in Seattle to deal with some of the partnership issues that Seattle has been known for. Let me introduce the Commissioners: To my far left is Larry Kessler from AIDS Action Committee in Boston; Eunice Diaz from the Los Angeles area and the Assocciate Professor at USC and she has worked extensively with the Hispanic community. Harlan Dalton, Professor of Law at Yale and editor of AIDS in the Law; and Dr. June Osborn, the Chair of the National Commission, who is the Dean of the Public School of Health in Michigan, University of Michigan. I'm Scott Allen from Dallas. This is John Goldman, a lawyer in private practice in New Jersy and former president of the National Hemophiliac Association, and Jim Allen from NAPO -- and what does NAPO stand for? MR. JIM ALLEN: National AIDS Program Office. MR. SCOTT ALLEN: From NAPO and working with the Secretary of Health; and Mary Byrnes is the Executive Director of the National Commission. June, would you like to say a few words about the Commission as a whole and then I will be more specific VERLYN DECKERT, RPR 10 il 12 13 14 15 16 17 18 19 20 21 22 23 24 25 about what we are here for. MS. OSBORN: Well the National Commission on Aids was recruited by an act of Congress which was part of the first major AIDS legislation in late 1988. As it was designed by Congress, its considerable purpose was to be as independent as possible and to be responsible for both the executive and the legislative branches of government. So of our 12 voting members, five were appointed by the Senate and five by the House and two by the President. And in addition, three cabinet secretaries are exofficio members or as it needs. We have a two-year mandate. We began our work just slightly less than a year ago in the beginning of August, once all the appointments were made. And over the two years to follow, we are to be as proactive as well as reactive as we can be in guiding both the executive and the legislative branches of government on issues of national policy in an effort to bring that along and to improve and develop national consensus concerning the AIDS epidemic. To do that, we have about three different forums of Commission activities. Because of the nature of our membership, one of our club voting members is a member of Congress and in addition, three cabinet secretaries are regularly in attendance at our full hearings. Therefore, ~ -VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 most of those hearings we hold in Washington are on an every-other-month basis. On alternate months we have been trying to do side visits in areas of the country which are prototypic of the features of some of the epidemic that we feel need a lot of attention and that's the second mode of activity. And then a third represents the division into small working groups of members of the Commission to focus on particular issues in a variety of ways. This, as Scott Allen will say in just a minute, is the one vote and one of the largest working groups looking at human and social issues and has met in several locales around the country as a way of accumulating both the experience and the feelings of the people involved in the epidemic in different locales. So I'm actually not a member of the working group but the kind of rich testimony that has been part of the activity makes it a privilege for me to be here and I'm glad that the Commission's been made so nicely welcome. Thank you. MR. SCOTT ALLEN: Any Commissioner can come and we are very happy that June has joined us on several occasions. And let me explain to you what we are dealing with. We started out in Boston several months ago dealing with testing and early intervention, and had a round-table VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 discussion and so forth in that meeting and felt like we needed to look at it further and to look at the continuum of care models and so forth. So we decided to have a meeting in Dallas where we're dealing with continuum care models dealing with health folks and getting their perspective as well as community-based organizations and then looking at obstacles to care. And we had more of a reasonable approach, the balance playing to all of the crucial and excellent testimony. And we felt like we needed to move on out here to the west and get some perspective from this area and look at partnerships, as we have heard so much about Seattle and the partnerships and how things have worked well together. And doing some background reading, it sounds very encouraging. But of course, we want to hear from you all and want to hear what we can expect in the future. So we are very pleased at this time for you to come to help us out in this process and let us then begin with the first panel. Jon Fuller is a Doctor from the Jesuit Urban Center, Boston, Massachusetts; and Gail Barouh, from Long Island Association for AIDS Care in Huntington, New York; David Woodring from the National Native American AIDS Prevention Center in California; and Linda Meredith, ACT UP Women's VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Committee, Washington, D.C. What do you say that we have six minutes and the timer will go off at six minutes and then you will have ene. minute to wrap up. So you will have seven minutes altogether and so be sensitive to the time so we can have a dialogue with you all at the end of your formal testimony. So let's begin with Jon Fuller. MR. FULLER: Good morning. I appreciate your invitation to share some reflections on the pastoral needs of persons infected with HIV, to discuss barriers to the effective provision of that care, and to suggest ways in which the delivery of pastoral services might be improved. I believe that the relationships that HIV-infected persons develop with their physicians and with their pastoral ministers are archetypical; both represent critical needs of the human person. Physicians and ministers have privileged access to one's relationship to some of the most primordial themes of human existence, | including one's experience of and attitude toward pain, illness, loss and death, and of one's understanding of and relationship with the divine. As an AIDS clinician in San Francisco and Boston, I —e . . have had many clients, often without formal religious ts affiliation, who have manifested an intense desire for contact with pastoral personnel to assist them in dealing VERLYN DECKERT, RPR 10 1i 12 13 14 15 16 17 18 19 20 21 22 23 24 25 with the spiritual challenges that HIV infection presents them. Both of these roles need to be made available to a person who is struggling and suffering from this life-threatening illness, and in my experience it is as important for clients to be able to develop ongoing, long-term relationships with their pastoral providers as it is to do so with their clinicians. Both relationships are commitments that will hopefully be maintained through | all stages of HIV-related illness, quite often including the client's death. However, having described the central role that ministers should have in comprehensive AIDS care programs, it is no more reasonable to ask an unprepared physician to respond competently to an AIDS patient than it is to ask an untrained minister to deal well with the professional challenge and personal engagement that come with doing AIDS ministry. I have heard of priests who have refused to see HIV-infected patients or have insisted on giving communion with gloves and mask on. One particularly poignant case of the damage that can be done by such ill-equiped ministers is forever burned into my memory. A young man who was critically ill in an intensive care unit asked to see a priest in order that he might be VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 i9 20 21 22 23 24 25 10 anointed and receive communion. His lover at home was also struggling with the AIDS diagnosis. The priest on call who came to see this young man told him that he would anoint him and give him communion, —— but only on the condition that he first renounce his — (SME longstanding relationship with his lover. Desperate to SL a a receive the sacraments in his failing state, he agreed. Unexpectedly, his lover died at home that night, and this young man had to deal not only with the death of his = Le ne partner, but with his own renounciation of their caring = 3 —~ = ee relationship that had been extracted from him under eee ne _ duress. Although this story occurred some seven years some Seven years ago, I regret to say I've seen similar attitudes played pacer attitudes —eut—during this past year. When several such unfortunate experiences occurred at San Francisco General Hospital where I trained as a resident, members of the nursing staff who knew that I was a seminarian would frequently approach me to ask for the names of priests who could provide better informed and more sensitive AIDS care. I'm happy to say that many qualified persons made themselves generously available and that many persons at the AIDS epicenters have excellent track records in this regard. The clinical pastoral educational programs at San VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 11 Action, a Franciscan Brother and a Sacred Heart Sister as i "anata apne anco hea Francisco General, at St. Clare's, in Manhattan, and at Deaconess and the city hospitals in Boston are all examples of programs that not only provide superb care to their own clients, but also comprehensively train other ministers from around the country to carry on the excellent work being done in these institutions. While I have described the real probability of the poorly equipped pastoral ministers, these are by far outstripped by the thousands of competent and committed individuals who provide pastoral assistance to HIV-infected persons on a daily basis in all parts of the country. One patient I worked with at Boston City Hospital ms ee TO al? enjoys telling the story that he has a priest for a a SSC‘tS doctor, a Franciscan Sister as a client advocate at AIDS ee Rg buddies, and has a_ sister of Notre Dame de Namur as his oo NS a == nurse from the Boston Visiting Nurse Association. ee Providing AIDS pastoral care presents some unique challenges, not all of which are due to the medical realities of this disease with which other providers must also contend. At least in my own church, many of those providing AIDS care do so under a considerable burden. While some have been officially appointed to do part-time or full-time AIDS care and are financially VERLYN DECKERT, RPR — rc et ers 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 12 supported for doing so, many others have entered this work as a second, third, or even fourth career and must personally bear the burden of getting themselves trained in the work and then must frequently Support the volunteer hours that they give by other full-time work. Only very rarely is professional pastoral care financially supported through healthcare agencies or AIDS organizations. I have heard ministers describe their experience of having to be discreet about doing AIDS ministry, either because they will be labeled as gay by their peers or superiors because of their interest in AIDS work or because they are concerned about putting themselves in delicate situations if in their work they privately encourage education about condoms to reduce HIV transmission or if they support bleach distribution or needle exchange programs for addicts. Pastoral ministers frequently have to bear the burden of tremendous anger and resentment directed towards the churches of which they are a part. Many gay men express the feeling that they are only welcome in the church when they are sick and dying, and they want to be accepted and welcome in the church community when they are in good health as well. Equally do Catholic positions regarding condom education and needle exchange programs increase the VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 13 division between the church and AIDS groups, making it more difficult for individual pastoral providers to effectively overcome the resistance which can become built up toward an institutional church which many individual ministers represent. Condom-throwing protests at the ordination in Boston several weeks ago are one example of the anger that is held by many towards the Catholic church and specifically towards its response to condom education. But despite the fact that AIDS ministery may be fully supported, be cast under a cloud of suspicion, and can be burdened by relationships to the institutional church of which one is a part, it is also indisputable that a tremendous amount of competent pastoral care is being courageously provided at the grass-roots level. This work for many represents a vocation call that is rooted ina strong faith conviction that allows their work to thrive despite minimum financial or psychological supports. Beyond the relationship that any individual has with his or her pastoral minister -- is that one minute? Let me move to my recommendations. First, as models for the comprehensive care of HIV-infected persons are being developed and refined around the country, fit is critical that pastoral providers be given their appropriate place on the AIDS care team. VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 14 Unless there is a consensus that comprehensive AIDS care programs should make a variety of pastoral services available to their clients, this aspect of care can never hope to compete with research and clinical care for space and dollars. And this has already happened at my own institution, financial support and physical space for providing this care will simply not be forthcoming. A central role for ministers should exist not only in the inpatient setting where it has traditionally been supported even in the public health sector, but especially in the outpatient and home-care environments where patients frequently initiate and develop ongoing provider relationships and where the majority of HIV-related care is being provided. Second, pastoral providers doing AIDS care usually work on a shoestring budget and have a difficult time making ends meet. This makes it difficult or impossible to pay tuition and conference fees for the professional development in the ongoing training that these workers need as much as any other other member of the AIDS care team. Support for the training and development of these professionals, as has been partly accomplished through NIMH-funded grants, could go far to guarantee competent persons will be available when called upon to respond to VERLYN DECKERT, RPR 10 11 12 13 i4 15 16 17 18 19 20 21 22 23 24 25 the spiritual needs of these patients. It is also critical that once they are trained, these ministers be given adequate opportunity to be refreshed and supported by one other -- I'm almost done -- as burnout can be extreme and individuals will need to leave this work after a few years if not properly supported. It would be extremely helpful for this Commission to recommend that all professional ministerial training programs, both graduate school and hospital based, develop ee curricula in pastoral care specifically designed to See pn a , prepare their trainees to constantly care for this a ns ee population. Finally, while small segments of scientific AIDS meetings, such as the International Conferences on AIDS, have been devoted to ethical and pastoral care issues, these are more frequently carried on in separate corridors and without facilitated diaglogue between ethicists, theologians, clinicians, and pastoral providers. While many of the theological controversies that my own church deals with must ultimately be dealt with internally, increasing dialogue between policy makers, clinicians, theologians, and ethicists regarding the interface of moral theology and our developing understanding of the complex notion of the common good and VERLYN DECKERT, RPR 20 21 22 23 24 25 16 public heaith could certainly be better facilitated as we struggle to deal with this expanding epidemic. MR. SCOTT ALLEN: You almost did it. It always scares me. It's a hell of a long way, but thank you for trying to be sensitive. Gail is next. Gail Barouh. MS. BAROUH: Good morning. My name is Gail Barouh, I'm the Executive Director of the Long Island Association for AIDS Care, or LIAAC. Today I'm here to talk to you about the -- MR. DALTON: Excuse me. But the reporter is going to go crazy if you don't slow down. MS. BAROUH: Part of it is that I come from new York. Today I'm here to talk to you about the surburban community-based spectrum on AIDS. Long Island is and has always been the nation's surburban area with the highest incidence of AIDS. The Centers for Disease Control on Long Island, Nassau and Suffolk Counties, which is LIAAC Territory Number 19, is at the top 25 cities with the highest incidence of AIDS. Nassau and Suffolk Counties cover 1,200 square miles and have a population of 2.6 million. These 2.6 million are popularly thought of as white middle and upper middle class nuclear families who commute to good jobs, go to the beach in the summer, who park at least two cars in their garages. They better have two cars, because Long Island VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 17 has almost no public transportation. These simple facts lead us to look below the lows of surburban life. Transportation, housing, healthcare, even hunger are problems for a growing number of Long Islanders who don't have the income it takes to keep up. After all, drug abuse is also taking its toll. Long Island has many minority populations, including Blacks and Hispanics and gays, who are living without much of the recognition and social support found in cities of comparative size. AIDS is a horrible way to get attention, but it's turning the focus on long overlooked members of the Long Island comnunity. An example of this, Blacks represent 7 percent of Long Island population but 27 percent live with AIDS. Hispanics are about 4 percent but 7 percent are AIDS cases. Gay men are estimated to be approximately 10 percent of the popupation but account for 35 percent of people with AIDS. A majority of Long Islanders AIDS cases relate to intravenous drug use. In fact, Nassau County ranks fifth in the nation for intravenous drug-related AIDS. And there's more grim reality in surburbia. Our area has a large single population and a high divorce rate. We suspect that this is a partial explanation for our high number of people with AIDS, which is nearly three times VERLYN DECKERT, RPR 10 Li 12 13 14 15 16 17 18 19 20 21 22 23 24 25 18 the national average of 9 percent. Twenty-six percent of LIAAC caseload is female. Also 10 percent of all cases have had hetrosexual contact. Among our teenagers, drugs, lifestyle, proliferation of runaways, sexual abuse, prostitution, and even intravenous steroid use are contributing to their growing risk of HIV infection. As the agency pushed ahead, providing client volunteer and prevention techniques, we encountered many barriers. Some we expected, others took us by suprise. Here are four obstacles we didn't expect. We encountered continual fear, reluctance, and denial on the part of politicians, physicians, dentists, hospitals, long-term care institutions, to both working with and planning for people with AIDS. In 1987, county-wide elections resulted ina Republican majority in Nassau but a democratic majority in Suffolk, the first in decades. This inter-island party, which left the county with a complete lack of government structure, led to real problems in trying to get them to work together on AIDS. The Island PWA population has not naturally drawn tegether because of AIDS. Sometimes the common background of AIDS brings about a growing disparity of belonging among diverse groups as it has in many cities. On Long Island they are holding on to the old sterotypes such as VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 19 homophobia, racism, sexism, and an intolerance towards the homeless and poor. Finally, we have received little support from either the business community or other philanthropic foundations. Beyond small grants for specific projects, no other corporation or foundation has demonstrated much concern about AIDS on Long Island in terms of dollars or cents in education. Following is an analysis of the various modes of transmission among the LIAAC clients. Forty-two percent intravenuous drug use, 35 percent gay, 10 percent hetrosexual, 7 percent bisexual, and 3 percent transfusion related, 2 percent children, 1 percent unknown origin. Of this total population, 28 percent are minority group members, 26 percent are women, and 11 percent come from a family in which more than one person has AIDS, usually a mother and a child. Although much has to be done on state and local government levels, here are four recommendations for changes on a national level. Nunber(Gne) consideration needs to be given to separate reporting procedures for ee surburban and rural areas with high incidence of AIDS. a ee . Number two, the Centers for Disease Control should count all cases of HIV infection, not just cases of full-blown AIDS. Number three, surburban and rural areas ESS EIT es, “VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 20 RAL IAL eer tr S have many people who are diagnosed and counted in the cities and then move home to the surburbs to live and receive treatment. This issue must be addressed. On Long Island, over a third of all cases are migration cases that ae all ee were counted elsewhere. — And finally, the federal government should sponsor a pilot study focusing on surburban and rural areas outside of major cities to look at the changing face of the epidemic, for instance, increases of infection among women and multi-family members and with hetrosexual transmission. Thank you. MR. SCOTT ALLEN: David. MR. WOODRING: Mr. Chairman and Members of the Commission: Thank you very much for the opportunity to speak with you regarding the social and human needs of our first citizens who are infected and impacted by HIV. First and foremost are the issues surrounding confidentiality. Indian Health Services has tried to assure Native people that their records are kept private, yet we know that most of the workers in the area clinics are related to patients being serviced. This ' begins with testing and continues through the medical and emotional care of the individual. Without better TR _ re ian assurance of confidentiality, many Natives will not and ee cannot will seek treatment. ae ree VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 29 21 Given the accessability to alternate testing and treatment, many on reservation land have no means for transportation. In fact, many CHR's are not informed about alternatives and those who are informed fail to actively help individuals seek these services. Case t ae management 1s something that none of my people understand. eee - ae Saas In the urban setting, most Natives must seek help from already established AIDS service organizations, many of which have not been informed about the customs and living conditions and level of knowledge in the Native community. Native people have no concept for long-term care and the choice of hospice doesn't exist. In those communities where HIV is a reality, the only thing that is consistent is the fear and denial of its existence. Many medicine nage a I any men will not treat the HIV-infected people for fear of ‘See ere losing credibility within their community. Many Native — people believe that as long as they deny this illness, that their community is unaffected. —_ Although Indian healthcare has made important strides with the Indian people, the facts show that BIA tribal government has done nothing in the way of service delivery or HIV education. Unlike other communities, there is no true community organizations. Church groups, Boy Scouts, Girl Scouts and the like are missing in the Indian VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 22 community on reservations, and in the urban setting those community groups do not specifically serve Indian people. More attention must be given to the elder and clan / mothers of the tribe. Until this happens, AIDS will never pe 2A AR AS OR mes er a es NANO SEY be seriously recognized by Native people or thought to be the threat to the community that it is. One of the reasons for this lack of attention is the subject of homosexuality. For generations the subject of homosexuality was never an issue, but now, HIV has seen the emergence of discrimination, abandonment, and isolation from our own people. Substance-abuse workers see no need to deal with HIV in their counseling because HIV is still "their" disease. This comes from lack of training on their part, but more importantly from the challenge each of them deal with on a day-to-day basis. Many counselors, social workers, and CHR's feel that HIV could be more effectively dealt with by the recognized AIDS educators in the area. We must work diligently in our communities to mainstream AIDS services so the community can respond. Support groups do not exist in the ower — — Native community -as .a rule and those that do are built eee ee 1 = oe ne a around alcohol abuse and recovery prograns Everything connected with HIV falls on the shoulders of the AIDS educator. Those educators are challenged beyond belief. They are the area of education and VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 23 emotional support, transportation for the patient, advocate for the patient, and many experience discimination because they too have been labeled. Many Natives must drive 30 miles or more just to go shopping and many of them have no electricity or running water. Diets suffer and overall care becomes piecemeal at best. If the Natives get sick, they must either wait for their regularly scheduled appointment or be forced to sit sometimes for up to eight hours as a walk-in, many times suffering but not able to explain their problem because of confidentiality. If we are to successfully meet the challenge of HIV in Native communities, we must all work together for one common goal. We must recognize the majority of Native children want to learn about HIV and this gives them a power that none of us ever had. This barrier is the greatest of all, for if we continue as we are now, Indian people will see an end to the seven generations and the circle will be broken. I thank you again for the opportunity to speak here. MR. SCOTT ALLEN: Linda. MS. MEREDITH: I think everyone knows that women as a group have less access to healthcare in this country for 7% a economic reasons. In addition to that, women choose not egret to access a system which recommends invasive medical . VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 24 0 yh procedures or abortion counseling rather than informed choices as the norm. Lesbians face additional barriers because we have less frequent gynecological exams given the fact that we do not use contraceptives. And because of the discussion that occurs with doctors about that lack of need for contraception, we are often faced with homophobia in the medical environment as well. To avoid homophobia in the work place, many lesbians do not chose traditional employment with health insurance benefits or they may be self-employed. Women are the fastest growing group in this country to be infected by HIV. Their numbers increased last year by 45 percent alone. The lack of access, either because of economic reasons or their refusal to access, has translated to a staggering fact: Women with AIDS ive 15 andzachalt | Weeks from diagnosis to death. The average white gay man lives 3 39 months. In order to combat these alarming trends, women with Hiv infection must be able to access a CDC definition which informs them of their clinical manifestations of their disease, a legal, medical, and social services system which supports the needs of women with AIDS, an ACTG system which is committed to including women in the development of life-saving treatments, and safe-sex VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 25 education designed to educate women, not to absolve their male sexual partners from responsibility. Access to a CDC-defined diagnosis is critical for receiving Medicare, Medicaid, and SSI. Women are frequently denied access because the current definition of AIDS as established by CDC is based on ARC which has been defined and categorized in men. For example, chronic candida yeast in the mouth is a CDC-defined ORI but chronic vaginal candidiasis is not. Indiviguals who qualify for SSI receive $463 a month, ce ag not an insignificant amount. You must have one of the ST a EE diseases that's on the cpc list to immediately access these benefits. Since wotten's symptoms are not on the list, they must go through years of appeals and attorney's Seer — — fees. Often they are dead or near death before they're able to qualify. Meanwhile, a man with thrush can — a aaa promptly come in and receive his SSI check the following Te ee te te week. I met a woman with AIDS. This woman, let's call her Ann, was sued 18 months ago for custody of her two children by the children's paternal grandmother. The grandmother sought custody because Ann was HIV-infected. Custody was awarded to the grandmother primarily because re oe a Ann refused to show up for the hearing. When I talked to ea — Ann, she said she simply couldn't face the guilt and VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 0,7 1 % humiliation of showing up at the hearing. Ann's only wish is to retain custody of her children before she dies. The Court intends to give her back her children back if she can only improve her living conditions. But to do that, you see, Ann needs the money from SSI and Ann's cervical cancer is not on the official list of diseases. For every case of hetrosexual AIDS transmission from an infected woman to a man, there are 12 cases of hetrosexual transmission from an infected man to a woman. It's unclear what biological or social mechanisms can account for this pattern and I don't see any interest in the CDC to tell us why. Oy i} The CDC also refuses to investigate the probability of woman-to-woman transmission, even though a paper that was printed in Montreal by Denise Ribble describes 10 percent of women who were studied contracted HIV as a result of woman-to-woman sexual contact. mer, Women with HIV disease live in fear of a legal, medical, and social service system which offers punishment for, rather than assistance with, the special problems that they face. At a recent ACTG meeting, a site coordinator who worked in Worcester, Massachusetts, told me of three women who had lost custody of their children because their VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 27 anonynity was compromised when they accessed the ACTU there. Affected women are often women of low socioeconomic groups who prioritize their survival by buying food, paying rent, caring for their children. Their personal healthcare is not on their list of priorities. Social services must be made available for women with AIDS, allowing them the resources to take care of their medical needs. Let me tell you about a woman, I'll call her Marie, who enrolled in clinical trials at Montefiore Hospital in New York. During her enrollment Marie become pregnant. She was told that she could continue in the trial if only she would have an abortion. When the abortion was performed, Marie was also sterilized. She knew nothing of the fact that they intended to sterilize her. A lawsuit has been filed on her behalf by the Center for Constitutional Rights in New York. Is it any wonder that women with AIDS are afraid to enter these systems? a )) Only 5 percent of all persons enrolled in the ACTG system are women. Women are excluded from trials for a variety of reasons. First of all, before enrollment is granted, a woman must provide evidence of adequate birth control. While the concept of adequate is subjective, the interpretations at various sites are diverse. VERLYN DECKERT, RPR 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 28 An ACTG coordinator in the Bronx told me that almost any response is acceptable because they don't want to include women in their trials. A site coordinator in New Orleans told me that they have such rigid criteria that they specifically design those criteria to exclude most female applicants. The New Orleans site also told me that they refuse to admit individuals who are IVDUs and are not enrolled in a drug treatment progran. This philosophy presumes two things. First, that there are enough treatment programs to go around, and secondly, that IVDUs are irresponsible. Neither of these presumptions are true. ACT UP chapters and others across the country have regular needle-exchange programs for people who want to obtain clean needles and to voluntarily dispose of dirty ones. This doesn't sound to me like behavior of people who have a death wish. It sounds to me like behavior of people who are trying to save their life. Timing for blood collections during the pharmacokinetics phase of trials may be unnecessarily ere enc nea? rigid, often requiring a 48-hour sample when children must To nccg ' be picked up from school or cared for in the hospital, often resulting in missed appointments and removal from protocols. If NIH grant professionals can require institutional -VERLYN DECKERT, RPR 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 ‘29 assets such as libraries and computers to receive federal funding, why can't they require the provision of primary care physicians, routine gynecological assessments, child care and transportation? Finally, according to a study by Johns Hopkins, women do not believe they are at risk. More than 40 percent of the women that are now affected did not know that they had engaged in high-risk behavior. Safe-sex education is not reaching women in a way that is clear and believable or in a way that results in long-term behavioral changes. The language used to describe safe sex for women sends a clear message of guilt. The majority of data on women's safe sex presented at the Sixth International ee a Conference in San Francisco described the development of Pe a. Materials on the use of condoms in women. Excuse me, but ON ss the last time I checked, a condom fits on a penis. =e Further, the increasing use of the term vertical transmission sends an incorrect message to women, that it is their responsibility for HIV infection to a newborn. What about horizontal transmission that occurred at the time of conception? RRR ge me There is virtually no information on safe-sex guidelines for lesbians. The government's disinterest in this area, lesbian invisibility, and denial are all (Ooo “ eS telling us that we are not at risk. This simply cannot be a ( VERLYN DECKERT, RPR 10 li 12 13 14 15 16 17 18 19 20 21 22 23 24 25 30 true since I know that lesbians share needles, sleep with men, and engage in sexual activities which may put us at risk. Oppression is the absence of choice. For women with AIDS, the oppression kills. Something must be done immediately to give back the choice because in this case, choices save lives. MR. SCOTT ALLEN: Thank you. You may have other parts of testimony in the dialogue. One of the things that we have done originally is not only have we interacted with you all, but we want you to interact with each other. So let's have an open time of questions and responses and feel free to jump in MS. DIAZ: I have a question for Dr. Fuller. I was very interested in your concept of some type of academic certification for pastoral care related to AIDS, and that really hits home. I have concentrated a lot of my efforts during the last years working with pastoral groups who have seen the need for that. I'd just like some thoughts on how you feel what could be done in an interdenominational type of venue so —_— tp it just wouldn't be Catholics preparing their own for AIDS work, or what type of thing might be more of an ree _ ee interdenominational type of focus that could give us the ifi i Ai ifi j ad might be done certification or academic qualifications and mig SR VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 31 in that type of team spirit that you are talking about. MR. FULLER: Well I think there are already a number of currently acceptable pastoral education national organizations that certify ministers from all ae denominations _to MS. DIAZ: Chaplins? MR. FULLER: Chaplins, right. And many hospitals require a certification before they can take those persons on staff. So it's just a question of adding subject matter to the topics or CPE training required to be educating them nov. MS. DIAZ: I think the CPE program, at least what I'm acquainted with, really concentrates a lot on the inpatient provision of pastoral care and I like what you said in terms of focusing on outpatient and home-care services as well. MR. FULLER: The second way that that structure is already in place is that many minister training programs, seminaries or graduate schools often have a Master Divinitive program, kind of a national basic certification for people in the pastor forum as a profession. There is no national licensing board that are as a group as far as I'm aware, but many of these groups do meet on an interdenominational basis and can certainly share the concepts of including, for instance, education VERLYN DECKERT, RPR 10 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 32 about working with addicts, the minority members, transmission of HIV infection, so that their ministers will feel comfortable working in an HIV setting. MR. DALTON: I have actually three questions, so I can make them brief. Gail, I was struck by your testimony about how similar a lot of what you have said is to what we have heard from people talking about the problem with AIDS in rural America. In fact, you yourself drew the parallel and that was very useful for me. In your recommendations, however, one of them was the CDC should count all cases of HIV infection and not simply cases of full-blown AIDS. My question, I guess, is whether you then would recommend mandatory reporting of people who have HIV? MS. BAROUH: No, I would not recommend mandatory reporting. I think I was talking more along the lines with that women have such difficulty in being in the guidelines of full-blown HIV infection, which is the same problem that we have seen in Long Island, that the guidelines have not changed. We have many cases similar, of women who are declined from CDC because the doctors never assumed they have AIDS MR. DALTON: I can understand, for example, arguing that opportunistic infections that affect only women should be entitled as a way for AIDS diagnosis or VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 33 something less than full-blown AIDS should be entitled for federal entitlement or state entitlement. But I don't understand how you can say that -- MS. BAROUH: I think that's more along the lines of what I have been saying, that those changes have to be made. We have to report our cases to the state now on AIDS and ARC, using AIDS and ARC. And we have three to four ARC deaths per month. So we have three to four more ARC deaths per month and they are not getting any entitlements or other social benefits because they are not full-blown AIDS cases. Those procedures must be changed. MR. DALTON: For David Woodring. You began your testimony about talking about this particular problem of confidentiality of the infected Native Americans because the person that you might be dealing with may be somebody you know very well and may be somebody we know. I guess I'm wondering what can be done about that, a NIE because obviously there are drawbacks to having outsiders en ee ne in the position of AIDS counselors for the very same reasons that you also pointed out in your testimony. What a oo do you suggest? MR. WOODRING: My file itself has a confidential tag Lt ——__ Set a, oy e =e a A lot of times, like I say, if the patient comes in and is VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 34 not on an appointment basis, then they sit there in the waiting room around everybody else, feeling bad, waiting . to hopefully get seen. Most do get seen, but how much do they really get in care if it's 4:45 and they have been there all day long? MR. DALTON: Thank you. And Linda Meredith, I think this is the first time we have heard the L word in any of our hearings, so I want to ask a little bit more about that. I appreciate your talking about other women with AIDS besides lesbians. But I would like to focus on a particular piece of -- and also the invisibility of lesbians. But another is obviously the interest in lesbians that make it clear that as a group you are at lower risk than personally any other imaginable group. And yet, lesbians obviously are among those who are infected with the virus in part in that some lesbians do sleep with men and some lesbians do share needles. Where do we go with this? I mean, how do we sort of bring the visibility of the issue of lesbians affected with HIV and the problem of woman-to-woman transmission without at the same time putting you behind the eightball in a sense? MS. MEREDITH: Well first of all, I think that there are a couple of ways that you can go about it. First of all, the cbc is not interested in investigating woman-to-woman transmission, and if somehow they could be VERLYN DECKERT, RPR 11 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 35 encouraged to investigate whether or not various sexual behaviors among lesbians indeed do result in infection and to talk about that in literature, it might be good to put people into the mind set that that could happan. Another thing, you know, there's a real taboo in the lesbian communities about talking about really what we do sexually. And if you admit that you have slept with a man, then, you know, people sort of ostracize you. a some ways that has to be changed and the way that we sort So in of try and go about it in ACT UP is to host forums where lesbians can come and sit down in a safe environment and really open up about what they do sexually. And I think when you get lesbians to talk about their sexual behavior, then they start to get it that some of those things also put them at risk for HIV. MR. KESSLER: All four of you have alluded to the problems of stereo types, meaning discrimination. And I'm just wondering whether any or all of you might comment on what this Commission might do or say to help to break down some of those barriers. I was struck by that common theme. I mean, it's not that we haven't heard it before, but that's the first time in my memory that all panelists at ay one time talked about these barriers, whether it be _— Ig pe perception of gays, or if it involves pastoral, lesbians — =e VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 36 who have been with men, other problems in terms of communities, homophobia, increasing reservation in Native Americans, all of which are something that we have been seeing and hearing. But I'm wondering whether any or all of you want to comment on what this Commission might do, Say, or recommend. MR. WOODRING: One of the things I think that we could recommend, we need a national health policy in this country. We are not going to wake up Tuesday morning and do it, so why can't we make AIDS the vehicle to start that? Then we won't be worried about sterotypes if we have national health insurance. People, no matter how much you teach them, are still going to discriminate, if that's how they want to be. MR. FULLER: One way that I could recommend among the various denominations is to specifically address the national organization that represents each of the churches and specifically encourage them not only to let AIDS education be more forthcoming in training programs, but also to make it a little bit of kind of ministry specifically needed right now, one that requires special training and special resources and be given a respect from the top down, not from the current situation where it's the grass roots who often find the resources to get into the ministry, so be sorted by policy and by materials. VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 37 MS. MEREDITH: Somewhere, people are going to have to stop passing the buck. We sat down with Dr. Felgee (phonetic) on Friday to talk to about him about some of these same issues, and we were told again that AIDS clinical trials was not where people should come for healthcare and that it wasn't his job and that it was totally from a scientific research. So no one's doing it and everyone's passing the buck; it's not my job, it's not my job. We proposed to him to design trials which could be called something like the increase on longevity on women with AIDS when you compare them taking AZT alone to them taking AZT and having routine gynecological care. I mean, why can't you sort of free associate a trial design that could open up access to social services that could open up access to routine healthcare for people? But people pass the buck. So somewhere we have to identify whose front it really is and then, you know, really make them accountable for that responsibility. Because what I hear from a lot people is, It's not my job. MR. KESSLER: Dr. Fuller, I would like you to take your stole off and put your stethocope on. Do you want to comment on, I know you see a lot of poor individuals, a lot of women with AIDS. Do you want to comment on that? MR. FULLER: I fully support the testimony, VERLYN DECKERT, RPR 12 10 Li 12 13 14 15 16 17 18 19 20 21 22 23 24 25 38 especially the ones, for instance, relating the relationship of homopathic environment to cervical cancer. It's certainly an opportunistic infection and should be labeled for women. It's also true that I think the medical models, subspecialty models, that are developed for AIDS care centers has largely involved people from pulmonary medicine and infectious diseases and primary care, And in our hospital in Boston, I find where one-third of our clients are women who have yet to develop a working relationship with a gynecologist and obstetrician. Women are coming in the hospital, are screened for HIV, and ———s don't have any guaranteed follow-up in the HIV setting. —_— 7 enna, . MR. GOLDMAN: To David, I'm just wondering to what extent are the problems that you are relating more generalized in terms of the inadequacy of the Native American healthcare system as opposed to dealing with issues involving AIDS and HIV? MR. WOODRING: Well that starts the barrier, lack of communication and treatment, because most AIDS cases are systematized. Even though it has a good system and it does work, HIV has just brought it out even more. And we have Natives besides myself that have been in the hospital with AIDS. No one anywhere could get any kind of cooperation, any kind of understanding, and they told me VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 39 each time to go in and talk to the dying. That seemed, as we all know, to bring a message home, talk to somebody that has this. But out of the eight that have died in New Mexico, yT-”--—. seven of those were not able to be embalmed and their a arcane laa families want them embalmed. But because the only people a eres doing funeral work on Indian reservations were Indians who took off for other areas, seven of those bodies were not embalmed and now those people are coming in and their families are having deep trouble having to deal with that. I think a lot of the things that HIV is showing us is the inadequacies that we have in the healthcare system anyway. I keep taking my care to Indian Health Service because I know there are more Natives that will need care and the doctors have to have experience. But I do have Medicaid and I could go anywhere I wanted to. MR. GOLDMAN: Let me ask you a question, if I may. You talked about the, if I heard you correctly, the failure of some of the communities affected by AIDS and HIV infected to work effectively together and refrain from Ort some of their discriminatory actions even with each other. rr TN What kind of suggestions do you have or how do you propose i to get some more cooperation in that area? ee MS. BAROUH: One of the changes, not changes, but one of the policies that we continue at LIAAC which has been VERLYN DECKERT, RPR 10 li l2 13 14 15 16 17 18 19 20 21 22 23 24 25 40 very successful is to not segregate our support group services from people with AIDS. Everybody has the common denominator that if they had AIDS they would want to be in a group Support or the common denominator that if a loved one had AIDS they'd want to be in a support group. That politically has had a lot of problems with the minorities being provided places, Such as hemophiliac organizations that are only for hemophiliacs with AIDS, and that follows suit. That's opened up and changed a lot of systems on line for us that we will not segregate our groups. We also will not label our volunteers or our case managers to only work with people like themselves, which is part of the requirement of working for our agency if you want to volunteer. You go where you are needed, not necessarily -- I mean, there are some things that are just practical. Obviously, if somebody is Spanish speaking, they can volunteer to work with Spanish-speaking persons, but we are trying much more to have more of an integration in the community. The biggest problem is that people with AIDS on Long Island really don't see that they have AIDS. Denial is just amazing. You can have people that have been sick for two years and they do not think that they have AIDS, which is something that we really came up with when we started VERLYN DECKERT, RPR 13 41 10 11 12 13 14 15 16 17 is 19 20 21 22 23 24 25 the HIV forum, which is just information for people who are HIV positive. And we had people who were ver ver TO peop Yr y sick showing up and saying j l I_ might be “positive. So the denial problem is the biggest problem I ee, ea ce for uss MR. JIM ALLEN: I have got a couple of questions. First, Gail Barouh, can you tell me in a little bit more detail, you indicated that it would be good to have additional statistics or epidemiological information about cases in surburban and rural areas. What is it that you need? MS. BAROUGH: For us, we need not to be seen as part of New York City, which is our biggest problem. I think that a lot of rural and surburban areas are sort of lumped together with the major cities that have maybe a different profile. Certainly ours is a different profile than New York City has. It's the separateness we need more than anything, because we feel that that would sound out the individual problems of the communities, not just the problems of the whole state or surrounding cities MR. JIM ALLEN: Let me suggest that that's the kind of information, rather than getting that from CDC, that wt you need to get that from the county health department and I (aR gees state health department. Part of the problem with statistics that come out of VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 42 a federal government agency like cbc is, first, it's compiled for the whole nation, you know, things get lumped. And secondly, because there is a chain of reporting from the individual physicians and clinics to the local health department, and then on to the state health department and then on to CDC, there's a loss of detail as you go up the chain. In addition, the states sometimes put restrictions on what CDC can do. There may be some states that say, for example, I know we can work with CDC. The states will restrict us from publishing any kind of that information. So that I would challenge you, rather than lashing out at eee — cpc th €—ts—not—doing anything, go to the county ieee health department and state health department and force a eg them to give you the a, l_of detail and publish the kind of statistics you need. ~—-ys““hanount We are trying to get the state to look at us as a separate area right now. We are two counties that cooperated with the state in reporting procedures. That is a local problem that we have to deal with, I agree. MR. JIM ALLEN: But if you can't get the cooperation at that level, there is no way by the time you get up -- MS. BAROUH: I just think it's important that the Commission as a whole understand. You are right, if we VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 43 can't even get it from a local health department we are in a lot of trouble and a lot has to be dealt with on a local level. MR. JIM ALLEN: I think the point is well taken by the Commission. The Commission needs to take a very clear position in terms of encouragement. We can tell the state and local health departments to not hide statistics, to make them readily apparent so that you can do the kind of local analysis that you need. Clearly, the data is very important to understand what is going on and to take appropriate actions. The point is very good. Linda Meredith, let me ask you also, in terms of the epidemiologic investigation, what proof do you have? Why did you say the CDC is not interested in the female-to-female transmission? MS. MEREDITH: Well, one thing is that it's just not on the reporting that they do. Okay? And the second thing is, I don't know of any study that specifically is Te ——s designed to even say that the possibility of lesbians exist. People do hetrosexual studies on women all the time and they presume that it's a hetrosexual population when they haven't even asked the question. So that kind of invisibility of lesbians in general and our sexual practices in specific. Lesbians -- under the current CDC definition, they have no idea what's going on with VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 44 lesbians nor do they really care. MR. JIM ALLEN: Let me just back up and look at it from a different perspective. And first of all, I'd just like to know, have you talked with them directly or has anybody gone to them and laid out your concerns? MS. MEREDITH: Well we talked to them ina demonstration in February that was about that whole issue of the CDC definition and about lesbians in particular. And it was in a very vocal way, it just didn't happen to be across a conference table. MR. JIM ALLEN: Let me encourage you to do that also. MS. MEREDITH: I don't see any sort of movement on the fact that they are going to change the definition. I just read a paper about the increased morbidity of women with HIV infection. And they talked about the fact that only 34.8 percent of the cases that they looked at fit into the CDC final diagnosis. And they didn't even tell us what happened to the rest of the people, nor did they like even intimate that they might be embarassed by the fact that over half of those people who had died did not fit in their definition. So -- MR. JIM ALLEN: They do review it and I have taken notes and I will go back and I will talk with them. But let me just reassure you that there is an awful lot of investigation that goes on very quietly. And you are VERLYN DECKERT, RPR 14 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 45 right, there aren't any large cohort studies where they recruit lesbians and follow that, because it would be extremely low payoff to have it. On the other hand, for every case that is reported, we work very closely with state and local health departments to try to get out all the facts and information. And for any case that doesn't fall within acceptable -- for any case that doesn't fall within recognized risk factors, where there doesn't seem to be a means of probable infection, there are a whole series, pages and pages of questions of asking this person, to try to reevaluate. So it should show up in that kind of investigation to the extent that it's hapening occasionally. MS. MEREDITH: If you look at the pie chart though, about 52 percent of women have high risk use. That separates us. Nine percent of women who are infected, you know, we don't know how they got it; as opposed to men, which I think is like 2 to 3 percent. So I mean, where's the fallout? What's happening? It's like triple for women. MR. JIM ALLEN: My guess is it's a very high proportion that are in fact sexual transmission, but it's a situation where a woman will tell you that she's had lots of, you know, any number of different sexual VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 46 nN partners, she doesn't know whether any were drug users or bisexual men, whatever. It's very difficult to get the level of detail. I think the point is well taken and I will make sure I get it back to them. I would like to see you sit down and talk across the conference table though too. MR. DALTON: At the risk of publicly putting you on the spot, I assume that Jim Allen would be willing to try to facilitate such a meeting? MR. JIM ALLEN: Sure. MR. SCOTT ALLEN: I have one question -- actually, I have several that will wait until the end. One of the issues that you didn't bring up and I would like for you to address is the proportion of women of color that are ~ ee involved and the difficulty of racial barriers itself. MS. MEREDITH: I think everybody knows that women of color constitute 72 percent of cases. I didn't feel that it was -- I don't want to address a specific issue of women of color, although I know some of them. I would prefer for a woman of color to sit down at this table and ect ee = tell-you about those, which is why it's not in my testimony. Although there are some changes that are just < - exacerbated by the fact that it's a woman and it also may be a Black or Hispanic woman, but. she should tell you about that. VERLYN DECKERT, RPR 47 10 ll 12 13 14 15 16 17 18 19 20 21 22 23 24 25 MR. SCOTT ALLEN: We have that testimony. But I wanted your opinion of how have you interacted within the circles, of how much sensitivity there is to individuals of color. MS. MEREDITH: I'm thinking about the barriers to access that I described. I mean, sometimes people who are -- I don't want to stereotype this -- but sometimes people who are less well-educated or who do not have transportation to go from building to building to try to figure out the forms, to fill out the forms, cross the t's and dot the i's, are further denied access to a whole host of things that could be right there if they could just simply understand what they are. And so, you know, that has to do with low socioeconomic status. It often frequently coincides with the fact that you are either Black or Hispanic. Because you don't have from Square one the opportunities to educate yourself and to find out what is available to you. I really don't want to speak to that issue. MR. SCOTT ALLEN: Okay. I have another one. David, I have a question for you about the individuals that leave the community and return and the family support systems. Do you find the families are rallying around the individuals, the family members? And I hear there's a lot of ostracization from the VERLYN DECKERT, RPR 15 LO li 12 13 14 15 16 17 18 19 20 21 22 23 24 25 48 tribe itself, but what about the family and also the spiritual needs of the Native American and where does that come into play and is that a basis of some type of support? MR. WOODRING: Well, Right now, there's not much of the families rallying around. The basic immediate family where the person is actually physically living, they are. But they do not allow us even to know why they're there, what the problem is with that person. Because, like I said earlier, homosexuality was never an issue in our Indian communities, but now because of HIV a whole host of things are coming up. Most of the families have wanted to respond. There have been some which just flat turned away. My family wanted me to be with them. I was the first Native in Oklahoma who tested positive with the virus and the way they had to deal with me was to send me out of the state. Before that happened, while we were waiting for the test to come back to confirm that, everyone in the community knew what was going on. And my nieces and nephews, they quit going after a while to the grocery store because people would casually make a break from the line. So, that is also contributing to the lower life span of those who are HIV infected, We testified a little bit earlier about it, but I VERLYN DECKERT, RPR 10 1i 12 13 14 15 16 17 18 19 20 21 22 23 24 25 49 don't think we really touched on it. When I was diagnosed with ARC, I was sicker than I was with the AIDS diagnosis simply because I didn't know how I'm going to live, pay my rent, food, where will I be able to live and have any kind of livelihood. And there are many people in this country that have died who have died with ARC instead of AIDS. Like I said, you know, the small community groups that most communities have, that's not their people. And I tried to go out and talk to teenagers and I've personally talked to 6,000 this year already on AIDS. If this is the way we are going to have to develop and respond and depend on, we got big problems. MR. SCOTT ALLEN: Well, thank you all. Any more questions? Thank you very much for participating ana speaking to these issues. The next panel is David Schulman. David Schulman is with the AIDS-HIV Discrimination Unit, City of Los Angeles; and Robert Greenwald with the AIDS Action Committe, Boston, dealing with housing I believe; and Veneita Porter, Planned Parenthood, San Francisco; and Sean Duque, with PWA, member of the Board of Life Foundation, Honolulu, Hawaii. Did I pronounce that right? We will go in order of David Schulmanman, Robert Greenwald, Veneita Porter, and Sean Duque. VERLYN DECKERT, RPR 10 li 12 13 14 15 16 17 18 19 20 21 22 23 24 25 50 MR. SCHULMAN: I have seven minutes? I'll try to cover a number of different areas in my six minutes. First, I'm going to speak a little bit regarding what we in the City of Los Angeles have learned in dealing with AIDS discrimination itself. A great deal has now been written about AIDS discrimination and I would like to refer you to the items that we included in our packet. But I would like to emphasize one point in particular that needs to react with a lot of the testimony that I will be offering this morning and that has to do with emphasizing the importance ef combating the fear of epidemics itself, quite apart from the particular constellation of fears that are involved with HIV. We know about the issues regarding homophobias, fear of death and dying, fear of health dismissal. But as I have dealt longer and longer with interaction in the law and the epidemic, I am more and more convinced that some of the lack of national leadership and the ways in whoch law has filled in the — | . gaps has addressed a more primitive fear of social ns oe eter breakdown itself, and so to the degree to which lawyers and others can address this issue, which is somewhat independent of the fears connected to this particular disease, I think we will do a little bit better job. VERLYN DECKERT, RPR 16 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 51 I have attached a letter that my office sent to Edward Mercado who is the head of the office of Civil Rights for DHHS and I sent an exact same letter to Dr. Helen, encouraging DHHS to follow-up the hearing that was held, the workshop that was held last December, training ey National OSHA staff in AIDS discrimination techniques. See (Sep —h My collegues in New York and San Francisco and I assisted DHHS in putting this workshop together. There were not enough people attending, it was clear, because it was held in Washington and state, local, and federal agencies were not paying to get their people to Washington. I encouraged people then in follow-up letters ggg a lS and encouraged DHHS to fund regional programs. _ eee Te We have invented the model; we know how to do it; we have the staff available. I'm prepared to donate my time again and so are my collegues in New York and San Francisco, but it takes the push and I think the push has to come from you to say, Let's get the knowledge out and implement that knowledge. Next, I'd like to talk just a little bit about the private lawyer. Four years ago I was asked by the local Los Angeles County Bar Association to develop a training al program for volunteer lawyers. Based on my experience on not having an overwhelming group of people responding to AIDS education, I thought if we had 20 attorneys attend we - VERLYN DECKERT, RPR 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 52 would be doing quite well; 80 attended. And we had over 200 attorneys in the greater Los — ~ Angeles area, most of them from big city and ethnic— corporations, wanting to deal with human beings a little "Sc a om - Re ey bit in their legal practice and seeing the Bar's AIDS Ne Hospice Lawyer Referral Service Program as a way for them ~~, Tage