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Page 12 AIDS FOCUS Living With AIDS Services and Empowerment for PWAs Critical Task for AID Atlanta The typical rebuttal to any individual who's statements are critical of AID Atlanta focuses on how much good the agency accomplishes, how many clients they have served or how important the agency's services are to people with AIDS or ARC. However, it is precisely for these very reasons that it is vitally necessary to scrutinize the current functioning of AID Atlanta. The recent Robert Wood Johnson (RWJ) Foundation report offers the Board of Directors of AID Atlanta an opportunity to examine key areas of the agency. Unfortunately, the response of the Board at last Wednesday's meeting was generally to discount the significance of the unfavorable feedback and the individuals who compiled the report. At the AID Atlanta Board meeting, the RWJ Foundation was repeatedly compared to an "accrediting organization" by Board Member Don Smith. Dr. Smith opined that AID Atlanta needs to take this type of feedback "with a grain of salt". Accrediting organizations, however, do not provide direct funding to organizations they review. There exists a basic difference between accrediting agencies and funding organizations. Funding organizations have an inherent obligation to investigate how their financial awards are being utilized and have the option of discontinuing funding. Also, the content of the feedback offered by the RWJ site review team does not lend itself to being taken with "a grain of salt", as Dr. Smith suggested. Buren Batson, Executive Director of the agency, stated during the course of the meeting that the individuals who conducted the site visit were "...a group of academicians who know nothing about management" The individuals involved in the site visit may know nothing about management but their credentials and reputations suggest that they are experts in evaluating the outcome of management i.e. services rendered. The issue of lack of minority representation on the Board was also addressed during the meeting. It was stated that this seemed to be a problem for AIDS service organizations in other cities. Nancy Paris, Vice President commented that she felt the lack of minority representation on AID Atlanta's Board was "more reflective of Atlanta titan the rest of the country". The meaning of this statement was lost to most of those in atlcndcncc. It could be interpreted in many ways, few of which would encourage increased minority representation on the Board. During the course of the evening, a Board member commented that there "...must be a lot of powerlessness in being a PWA and we should listen to our clients". AID Atlanta recently increased the number of PWA/PWARCs on its Board of nineteen voting members from one to two. AID Atlanta must be willing to not only listen to their clients, but insure direct input by actively soliciting increased PWA/PWARC representation on its Board. AIDS service organizations in other cities have recognized the value of substantial PWA representation on their governing boards and key committees. There is, indeed, an initial sense of powerlessness in an AIDS or ARC diagnosis and routes for self-empowerment seem limited by the current structure of AID Atlanta. It would seem a primary goal of an AIDS service organization should be to foster empowerment for its clients via active involvement at the policy-making level of the organization. AID Atlanta staled their intention to establish a PWA/PWARC advisory committee to the Board last year, but the committee still does not exist AID Atlanta has indeed made major accomplishments in its relatively short history. Its staff and volunteers are dedicated and caring individuals whose contributions are critically important to the clients they serve. When people express hesitance to volunteer their time or money for political reasons, I emphasize the importance of the mission of the agency. We must continue to donate our money and our energy, but we must also insist on accountability and responsiveness from the Board of Directors. It is evident that there are members of the Board who are concerned with providing PWA/PWARCs with services and encouraging their empowerment Others, however, continue to foster the sense of powerlessness our community experiences in this epidemic. - John Kappers John Kappers is a PWARC, employed as personal director at a local hospital. He is involved in several AIDS activist organizations. Updates AIDS Drugs Updates No breakthroughs were reported at the July 14 Atlanta conference on AIDS drugs but there was promising unofficial word on a National Institutes of Health (NIH) study combining AZT and DDC and news that AL 721 is losing favor among physicians and some persons with AIDS. This second conference to update information on experimental AIDS therapies was held at Emory University's Woodruff Auditorium and was led once again by Atlanta physician-researcher Dr. James Braude, who was joined onstage by Dr. Barry Gingell, medical information director of the Gay Men's Health Crisis, infectious disease expert Dr. Carlos Lopez, and insurance representative Dan Easton. In the NIH study, persons taking AZT and DDC on alternating weeks reportedly have suffered no significant side-effects past the 40-week mark and are deriving the benefits of both drugs. This is especially good news for persons unable to tolerate the side-effects sometimes caused by full-dose AZT, and of strong interest to researchers seeking potential early intervention treatments for persons who's immune systems show signs of declining into full-form AIDS as evidenced by lowering T-cell counts. In other AZT news, an ongoing study suggests that persons receiving a half-dose of AZT for nine months appear to suffer no more infections than persons taking a full and more toxic dose over the same period of time. The study must continue for several more months before meaningful conclusions can be drawn, but the hope is that dose reductions will lead to fewer side-effects such as anemias and diminished white-blood cell counts. Also, a follow-up study reveals that after 72 weeks, AZT still appears to reduce infections and prolong life among some persons taking the drug. Evidence is now overwhelming that Texas Lawsuit May Set AIDS Care Precedents aerosol pentamidine is a highly effective prophylaxis against PCP in persons with AIDS and others who's immune systems are compromised (again as evidenced by T-cell counts below 200). The efficacy of this drug is one of the strongest arguments for persons to know their antibody status and regularly monitor the integrity of their immune systems. The efficacy of Dextran sulfate and Antabuse remains inconclusive. But a New Yoik physician following patients taking Dextran sulfate alone and in combination with other drugs reports rises (some of them significant) in patients' T-cell counts. However, this was not a controlled study in which variables could be accounted for, and the drug appeared most beneficial to persons with T-cell counts above 250. The FDA has recently approved further testing of Dextran sulfate, though regrettably not yet in combination with AZT. Faith in A1721 as an effective treatment for AIDS and ARC appears to be waning among both physicians and some PWAs. Word comes that the highly touted Israeli study was apparently deeply flawed and that a study of AL 721 in Munich concluded the drug rendered no clinical improvement to persons with AIDS. Dr. James Braude reports that approximately 25% of persons enrolled in Atlanta's placebo-controlled Ampligen study are experiencing rises in T-cell counts after nine months on either drug or placebo. Perhaps, one day, NIH will understand the importance of studying this drug and others in combination with AZT and DDC. A major lawsuit over substandard care of persons with AIDS in Dallas may establish national precedents on whether indigent patients have a right to health care. Parkland Memorial Hospital, a large county hospital comparable to San Francisco General, treats over 1,000 patients with AIDS, ARC or who are HTV-positive. Only one full time and one half-time physician are available to handle this patient load, which counts 700 patient visits per month. Typical AIDS patients are persons who lost their jobs as the disease progressed and exhausted their savings, thus becoming indigent The lawsuit brought by the Dallas Gay Alliance and the American Civil Liberties Union AIDS Project seeks to end these practices: • A waiting list for AZT. The cost of the drug is not the issue because the AZT is provided by a state program with federal funds. But the hospital does not assign enough physicians to monitor patients using the drug. The lawsuit also names the University of Texas Southwestern Medical Center, which provides medical personnel-students, residents, fellows and professors-for the hospital. This medical school rotates its personnel through all 132 of the clinics at Parkland Memorial, except for one-the AIDS clinic. This discrimination exacerbates the shortage of physicians in the AIDS clinic. The hospital admitted that in the one- month period from April 7 to May 6,1988, seven people on the AZT waiting list died. These were patients for whom AZT was medically prescribed but not available due to hospital policy. • Arbitrary denial of aerosol pentamidine prophylaxis and treatment The hospital's full time AIDS physician, after his recent resignation, pointed out that pentamidine costs the hospital about $100 per month per patient, while each hospitalization for pneumocystis costs the hospital $10,000 for the average stay of seven days, • Rationing of AIDS beds. Persons with AIDS have been forced to wait for a rationed AIDS bed until another patient is discharged or dies, even though other beds are empty. Patients ill enough to need hospitalization have had to wait 12 hours or more for a bed. The lawsuit was first filed in state court. Judges in Dallas are assigned at random, and a conservative judge was assigned to the case. But even he ruled against the hospital, forcing it to end the AZT waiting list, deliver aerosol pentamidine, and end the AIDS bed control. He gave the hospital 30 days to comply. Then the hospital moved the case to the federal court system. A moderate liberal judge, with a reputation for being very thorough and fair, had been assigned. Recently the Dallas Gay Alliance has asked the court for permission to change their pleading to a class-action lawsuit, one which would include 28,000 people and have a wider impact The ruling on this motion is pending. -San Francisco Sentinel - Terry Francis Information on these and other drugs are now available from numerous sources, including the Gay Men's Health Crises, Department of Medical Information, Box 274,143 WestTwenty-fourth Street, New York City, NY 10011; and Project Inform, 25 Taylor Street, Room 618, San Francisco, CA 94102. The toll-free national phone number is (800) 822-7422. The Atlanta Chapter of the National Association of People With AIDS 1132 W. Peachtree St.. 874-7926 meets the 2nd and 4th Thursdays of each month at 7:00 p.m. Membership is open to individuals with AIDS or AIDS Related Complex Next Meeting: August 11th