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Issue #133: July 13, 1997
FASTFAX is available by fax in the 215 and 610 area codes at no cost, or by mail anywhere for $20.00 per year, by calling 215-545-6868, and by E-mail by contacting and type the message SUBSCRIBE in the message section. Sources for some information in this issue include AIDS Treatment News and Au Courant.
Richman "suspends" plan to fund PEHAAP
WTP members demand ouster of holistic practitioner
AmFAR ends support of community trials
Pressure for Scott ouster mounts
Richman "suspends" plan to fund PEHAAP
Health Commissioner Estelle Richman announced today that she was "suspending" a plan to divert $200,000 to an AIDS group organized by State Sen. Hardy Williams of West Philadelphia until she could investigate numerous complaints filed by people with AIDS and AIDS groups in the city's African American community.Her action came after a boisterous demonstration by about 50 members of We The People and others outside the center city headquarters of the AIDS Activities Coordinating Office. It was announced by AACO co-director Joe Cronauer, who came down to the protest after receiving a list of five demands from the protesters which included an immediate agreement to stop the payment.
Richman had announced July 2nd that she was awarding $200,000 to the Philadelphia EMA African American Planning Group (PEHAAP), formed by Williams from among a small group of his political allies last year.
Williams had sought the funding so he could set up PEHAAP, which he has called the "recognized planning vehicle for the African American community," as the mechanism through which AIDS services in minority communities are managed and funded.
The plan created an uproar of protest among African American people living with AIDS and AIDS service providers in the African American community. Representatives of all of the major AIDS service providers in the city's black community have said that Williams has excluded them from his group, and he and Barbara Chavous, a consultant who works closely with Williams, forcibly prevented a small group of people with AIDS from attending a public meeting of the group several months ago.
The award included $100,000 Richman will find in the city health department budget, and the shift of $100,000 presently utilized by the Minority AIDS Project of Philadelphia (MAPP) to manage several million dollars of AIDS contracts funneled through the group by the city for black AIDS organizations. It was unclear what impact the shift of funding would have on present MAPP operations, although sources said that Williams' plan was to have PEHAAP take over management of MAPP with the funds.
MAPP currently receives close to a half million dollars to manage city contracts for minority groups in the city, as well as additional funding for "capacity building" and "technical assistance."
Most of the organizations funded through MAPP -- who have already complained that MAPP and its parent organization, the Greater Philadelphia Urban Affairs Coalition, has been ineffective in managing their city contracts -- are considering pulling out of the arrangement if Richman ultimately decides to go ahead with her plans to shift the funding to PEHAAP.
Two leading black AIDS organizations, BEBASHI (Blacks Educating Blacks About Sexual Health Issues) and the William J. Craig Memorial Foundation, left MAPP two years ago, and receive their funding directly without using MAPP as a fiscal conduit.
A coalition of African American people living with HIV/AIDS, AIDS service providers and others was convened last week by We The People to try to convince Richman not to go forward with the PEHAAP funding. We The People, which was one of the founding organizations of MAPP and is the largest minority AIDS-specific service organization in the city, had previously criticized both PEHAAP and Williams for forcibly preventing African American PWAs from attending PEHAAP meetings several months ago.
PEHAAP is mostly comprised of Williams' political allies from West Philadelphia, including community activist Novella Williams and Chavous. The only black community organization with involvement in AIDS services which has participated in the group is One Day At A Time, the North Philadelphia-based recovery house network. ODAAT has been plagued by personnel and tax problems over the past year, recently removing its director of AIDS services and agreeing to pay the Internal Revenue Service over $50,000 in taxes on unreported income, according to informed sources at the organization.
Concern about ODAAT has also been heightened by the recent theft of five computers, which contained confidential information on AIDS clients, from one of its neighborhood AIDS service centers.
A letter signed by 23 people with HIV/AIDS and 13 advocates and staff of AIDS service organizations was sent to Richman on July 7th expressing "vehement opposition" to the decision to fund PEHAAP. The executive directors of most African American AIDS organizations -- including We The People, BEBASHI, Colours, Unity, the Craig Foundation, and the Ecumenical Information AIDS Resource Center -- also signed on the letter.
Funding PEHAAP "would inappropriately give responsibility for capacity building to an entity that has no significant experience with the communities we represent," the letter said. "We are active participants in existing federally mandated HIV/AIDS planning bodies."
Curtis Osborne, executive director of We The People, said that separating out planning funding from the federally-mandated Philadelphia HIV Commission would violate the Ryan White CARE Act and make a "mockery" of the city's commitment to community planning.
Over half of the members appointed by Richman to the HIV Commission are people living with AIDS, most of them African American.
"Now that black people with AIDS are finally getting some say over the AIDS system after years of discrimination, the money grabbers are coming out of the woodwork to take our power away," Osborne said..
"Hardy Williams has had nothing to say about AIDS for years -- until he found a way to get some of our money through some back room scam," he continued. "He ignores people with AIDS, ignores African American organizations providing services to people with AIDS, and then the city turns around and tells him he's in charge. We won't have it."
Osborne noted that the city recently awarded over $2 million in grants for new AIDS services in minority communities, but Williams made no attempt to seek the funds for "new capacity."
"This is ludicrous," said Paul Gray, a person with AIDS who works at We The People. "Five months ago the Senator was so out of touch with our reality that he excluded people with AIDS from PEHAAP's meetings. Are we supposed to believe that he suddenly is now qualified to be our leader on this issue?"
"Sen. Williams has no track record of caring about people with AIDS. Most people with AIDS in Philadelphia are African American, most are poor, most are in desperate need of medical services and care," Osborne added. "This $200,000 back room deal takes that money away from the things we need to stay alive."
Guy Weston, executive director of the Ecumenical Information AIDS Resource Center, a North Philadelphia church-based AIDS service organization, said that Williams' plans violate federal rules that require community-based planning through federally-mandated "HIV planning councils." He said that Williams has claimed that Dr. Eric Goosby, director of the HIV/AIDS Policy Office in Washington, supports his demand for funding.
"It is highly unlikely that such as high ranking federal official would encourage a process that contradicts the requirements of the federal agency which allocates this funding," Weston said. "With this statement, PEHAAP undermines its credibility and they don't even know it."
Chanting "Hardy Williams, thief" and "HIV prevention, not Hardy Williams' pension," the AACO protesters, mostly members of We The People Living with AIDS and staff and clients of African American AIDS service organizations, demanded that Richman "cease and desist" from her plan.
The protesters said that if Richman has $200,000 available, it should be spent on direct care services for low-income people with AIDS.
WTP Life Center Director Melody Walker addressed the protesters, along with BEBASHI director Gary Bel, Colours' director Michael Hinson, and ASIAC director Richard Liu. Former AACO director David Fair also spoke to the group, noting that a similar effort by Williams to divert $100,000 in AIDS funds ten years ago was eventually stopped by Mayor W. Wilson Goode and then-commissioner Maurice Clifford, who instead used the money as seed grants for BEBASHI and the AIDS program at Congreso de Latinos Unidos.
HIV Commission co-chairs Mark Davis and Mick Maurer, AIDS Consortium director Larry Hochendoner, and the HIV Commission's new interim manager, Chris Bates, also participated in the demonstration, which briefly tied up traffic at Broad and Lombard Streets.
After Richman's decision to "suspend" the PEHAAP decision, Osborne, WTP executive director, said "We're happy Commissioner Richman has decided to back off on her plan to waste hundreds of thousands of AIDS dollars on a political scam. But we'll only be content when she assures us once and for all that this kind of corruption won't be tolerated."
"I don't know what kind of political pressures have led the health commissioner to promise to take $200,000 from the care of people with AIDS and give it away to a politician and his cronies, and I don't really care. "I don't know why the opinion of someone like Hardy Williams, who has no record of actually caring about AIDS or people with AIDS, counts so much more than mine does, or the opinion of the thousands of people with AIDS in Philadelphia that weren't allowed to be part of this decision. I know that it isn't politics that keeps me alive. I know that this kind of politics will kill me."
Osborne noted that federal law requires that there be a planning body to determine what happens with AIDS money that is appointed by the city and protected by the Ryan White CARE Act. "What the health commissioner is planning to do violates that law, and if necessary we will go to federal court to stop it."
Under the Ryan White Act, the city has two AIDS planning bodies: the HIV Commission and the AIDS Consortium. Both organizations joined in the demand that Richman withdraw her offer to fund Williams' group.
"PEHAAP does not now nor will it ever represent either the African American community or African American people with AIDS," Osborne said, noting that Williams had forcibly prevented black people with AIDS from participating in his group. "It's a front group designed to take money away from people with AIDS and give it to people who don't care about us."
Osborne continued: "African American people with AIDS have fought too long, too hard, and lost too much, for us to allow anyone -- health commissioner, mayor, AACO director, state senator, or corrupt agency head -- to take the progress we have made away from us. We think it's no accident that just at the time that African American people living with AIDS are finally at the table, someone on the outside tries to tear the table down."
"It will not happen. And if they continue to try to make it happen, we -- the people that this system is supposed to be all about -- will do whatever we need to do to stop them."
Osborne said that he has also asked for a meeting with the commissioner to further detail the concerns of the protesters.
WTP members demand ouster of holistic practitioner
On Monday, July 7th at We The People's monthly staff/membership program development meeting, several outraged members demanded that the staff remove Jennifer Baker Fleming, alias Ayisha Bey, from the weekly schedule of events at the We The People Life Center.Fleming/Bey has led a weekly workshop at the Life Center for several years.
"The membership had become extremely angry and vocal with their concerns over both Bey's holistic methods and the content of her workshops over the last two months or so," stated Rob Capone, We The People's Education Services Coordinator.
"Several members had approached me during the last month with concerns about whether or not her treatments were involved in the recent hospitalization of a We The People Board member. They also expressed anger over her comments and recommendations at several of her most recent workshops. They were telling me that she was using scare tactics in an attempt to sway them away from western medicine and into her holistic approach and that she was making unfounded health claims."
Capone said that members "were also telling me that she was making racial statements about the AIDS and drug abuse problems within the African American community."
Capone said he began sitting in on her workshops a couple of weeks ago and he was "deeply concerned over the way she was handling the Federal requirements that she obtain a referral from a physician before treating the members." She handed out a referral form and was telling the members "you don't have to see your doctor. Just get him to sign it."
During one of the workshops, a member reported that she was claiming to have saved a WTP Board Member's life. When confronted by Capone about whether or not she was making such a claim, she responded that she only said that he [the board member] had "testified" at her workshops that she had twice saved his life. When asked if this was before or after his hospitalization, she admitted that it was before.
Gerald Smith, a We The People member, told fastfax that "I was in one of her workshops a couple weeks ago when she began saying that the white supremacists were responsible for the drug problem in the African American Community." He said, "I responded that when I used drugs it was no one's fault but my own. I did drugs because I liked it, not because anyone forced me to. I then asked what any of that had to do with holistic healing. She didn't answer me, so I left."
Ellis Morrison, a We The People Board member and a member of the Positive Voices Outreach Team, stated "How can you trust someone who portrays herself as another race." He said that he was also concerned that Bey was constantly bad mouthing mainstream medicine. He stated that during her workshops she reads articles that focus on adverse side affects of some medicines and then speaks about people who she claims "testify" that she saved their lives.
"I feel that she is manipulating PWA's for her own personal gain and someone has to stop her before she hurts anybody else," said Morrison.
Sharon Greene, another long time member of We The People, reported having a bad experience with Fleming/Bey's holistic treatments. Greene said that Fleming/Bey recommended a treatment to her without asking any health questions or providing any warnings and that the treatment caused her to seek medical care at an emergency room. "I had a bad reaction to her treatment and ended up in the hospital with my blood pressure through the roof."
Nadine Tucker-Dorn, a We The People Board member and Co-Chair of Us Women, said that "after several incidents and illnesses of HIV positive people associated with Aisha and her herbs, I can only conclude that the membership made a good and intelligent decision." She said that "If she is going to be involved in holistic medicine within the AIDS community, then she needs to be licensed or certified and show proof that she has knowledge of the interactions between her treatments and the various medications that most people with HIV use."
"I am proud of the way the membership handled the situation," Tucker-Dorn said.
WTP Board member Ted Kirk, Ph.D., added that "If Ms. Bey is truly sincere and feels that she follows regulations for Ryan White funding, then where are the physician referrals? Where is the documentation of her claims? What are her credentials?" Kirk went on to say that "the membership is clear about their desires. True empowerment is their voice and that voice is clear regarding Ms. Bey."
On Wednesday July 9th, at the monthly WTP Board meeting, Fleming/Bey attempted to persuade the Board of Directors to overrule the membership action and reinstate her workshops. During the debate, several members and board members reiterated their reasons for wanting the workshops removed. There was also a consensus that this was not even a board issue. One member and a guest were the only people in attendance who were supportive of Ms. Fleming/Bey.
During her pleas to the board Fleming/Bey remarked that her removal was "a witch hunt, orchestrated by staff." She also stated that "until I came to WTP the membership here was just laying around waiting to die," which drew several angry responses.
After Ms. Fleming/Beys remarks, WTP Board President Linda Smith stated that "The membership made a decision, staff responded, and the Board of Directors fully supports the staff response." After Smith's comments, Fleming/Bey started to leave, saying, "Forgive them Allah for they know not what they do."
AmFAR ends support of community trials
The American Foundation for AIDS Research (AmFAR) will end support of its Community Based Clinical Trials network at the end of the current three-year contract cycle in January 1998, except for funding to finish, analyze, and publish the trials still underway.The decision will affect Philadelphia FIGHT, the region's only community-based AIDS clinical trial network. FIGHT's community-based trials, which are also supported by a federal grant received through the Community Programs for Clinical Research in AIDS (CPCRA) network, have been highly successful in attracting low-income people and people of color into important AIDS drug trials since the group's founding in 1990.
Jane Shull, FIGHT executive director, said in a statement that "Philadelphia FIGHT is saddened by AmFAR's decision to withdraw support from the Community Based Clinical Trials network and to end its historic commitment to community based research. While we regret that AmFAR no longer feels that locally based research is worth their support, the ending of AmFAR's commitment to research in this city will not close FIGHT down, nor will it change FIGHT's goals."
AmFAR will begin a new clinical research program in which it will sponsor studies, but not be involved in their day-to-day management, according to a report by John James in AIDS Treatment News.
AmFAR president Arthur J. Ammann, M.D., said the change is being made because "AmFAR felt strongly that at this point in the epidemic, it needed flexibility to put out requests for proposals for very specific areas. Continuing to study drugs for their effectiveness -- the kinds of trials being done by government networks and by pharmaceutical companies -- is very expensive and beyond the Foundation's capabilities."
AmFAR has spent $30 million on CBCT trials since it started that network in 1989. Some of the 12 sites currently being funded, including FIGHT, also have other support from government or industry; others do not.
In a formal statement, Shull said that FIGHT "will continue our research; we will continue our education programs including Project TEACH; and we will continue to work toward the development of the Jonathan Lax Immune Disorders Treatment Center, which will begin its first pilot program this fall. AmFAR's funding represented about 11% of FIGHT's budget and we can survive that loss."
Shull noted that "FIGHT would not exist were it not for AmFAR's support for us in the past. It was a seed grant from AmFAR, quickly matched by the Graduate Health System and by AACO, that allowed FIGHT to begin its research in 1991 and we think it is important to remember that."
Nonetheless, Shull said, she is concerned at the impact the AmFAR decision will have on AIDS research. "There will be a more subtle loss, both here and nationally, that will affect the kind of research that can be done in AIDS and who will control the agenda. AmFAR has ended its commitment to community based research, at the same time that the National Institutes of Health threatens to end theirs as well. The idea of community based research has always been that patients and physicians in the community were close to the needs of that community, and their research would be driven by those needs, rather than by scientific publications and the grants that those publications attract.
"To a great extent we believe that community based research has been driven by community needs, for example, the first trials of prophylactic Pentamadine were done in the community, as were the only comparative trials of nutritional supplements for weight loss and wasting. Yet the pressures against this kind of research are enormous, and without the core support that AmFAR provided for its network for the past eight years, it will be harder and harder to launch trials that grow only or mainly out of community concerns."
Shull said that other important research will probably continue to be supported by AmFAR. "Basic research into the causes of the breakdown of the immune system with HIV and into immune reconstitution is critically needed. FIGHT has supported and continues to support basic research through our partnership with the Wistar Institute. Large strategy trials, which attempt to discover the best way to use and combine the drugs now available to us, will continue to be supported by the National Institutes of Health at least for the present. But future opportunities for patients and physicians to band together to try to meet the needs of people living with HIV in their communities, and design research studies that will respond quickly to those needs may very well be lost."
"We must all ask ourselves what the cost of that loss to people living with HIV might be," Shull said.
AmFAR plans to start the new clinical research program with an RFP (request for proposals) issued in January 1998 for funding in July, and to issue new RFPs annually. This funding will be open to all qualified research groups, not only community-based groups. The kinds of studies which this program will fund "will be determined by outside advisory committees based on urgent research priorities in the epidemic," and AmFAR statement said.
According to Dr. Ammann, the total AmFAR funding for clinical research under the new program is expected to be comparable to what is being spent currently.
In addition, AmFAR plans grants to community-based organizations, starting in January 1998, "for outreach and education activities...to enhance the recruitment and retention of individuals into clinical trials available in their communities." This program will focus particularly on outreach to disadvantaged groups currently underrepresented in clinical trials.
Pressure for Scott ouster mounts
The Philadelphia Tribune, one of the nation's oldest and most respected black newspapers, has called on Mayor Rendell and Health Commissioner Estelle Richman to "dismiss" Richman's chief of staff, Richard Scott, who was convicted by a federal court jury in May of racial discrimination against four black employees while he was director of the city's AIDS Activities Coordinating Office (AACO).The Tribune editorial echoes a demand from ACT UP Philadelphia, and a petition drive in the city's black and PWA communities which has already obtained almost 2000 signatures.
Tyrone Smith, executive director of Unity, Inc., a leading black gay organization, obtained numerous signatures on the petition at an AIDS conference for African American churches last month. Heshimu Jaramogi, host of a radio show on WDAS-AM, has also called for Scott's removal.
Meanwhile, Kevin Feeley, spokesman for Mayor Rendell, said that it is the Mayor's position that the all-white federal jury that convicted "was just wrong" in its verdict. He reiterated that the Mayor's "view of the facts here is that there was no discrimination." Feeley told the gay newsweekly Au Courant that since Scott has been removed from any responsibility for AIDS programs, neither the Mayor nor Commissioner Richman see a reason why he should be removed from his post.
As chief of staff, Scott is responsible for administrative supervision of the Commissioner's office and for representing Richman to other health department staff. He was formally removed as director of AACO in 1994, after an uproar of protest from African American PWAs and AIDS organizations about what they alleged was his racial bias in the allocation of city and federal AIDS funding, and the inadvertent release by his office of the identities of four African American people with AIDS then serving on a city planning committee.
"I think it is a slap in the face to people of color with HIV and any person in the city with HIV for Richard Scott to remain employed by the city," said Jose DeMarco of ACT UP. "Scott called [black AIDS leaders] 'Amos and Andy'...and too flaky to run AIDS service organizations," DeMarco said, citing testimony in the federal court trial by David Fair, former AACO director and former director of We The People. "Scott also said that We The People, an organization run primarily by African American people living with HIV and AIDS, is incapable of running anything except a flophouse."
DeMarco said that "ACT UP will not rest until this man has been fired." The group is planning a "direct action" to dramatize its concerns, but details were not available at press time.
Clifford Boardman, attorney for the four plaintiffs who were vindicated in their discrimination complaint, told Au Courant that the city has appealed the jury's decision and is seeking almost $300,000 to have its legal expenses in defending Scott reimbursed by the plaintiffs. "They have no grounds to recover the money," Boardman told Au Courant. "They lost this case. There is no legal basis for granting fees to the losing party and the defense is well aware of this. The city is well aware of this and is wasting the taxpayers money." Boardman said that the plaintiffs will have to spend between $5,000 and $10,000 responding to the city's appeal.
"This is merely a tactic by the city of Philadelphia to do what it has been doing all along -- to make justice a bidding war," Boardman said. "Our position is that if the city tells the public it must respect the verdict when a jury verdict is detrimental to the black community, then the city must accept the jury verdict when it vindicates the black community."
ACT UP has asked those supporting its efforts to oust Scott to participate in its regular weekly meeting, held Monday at 7 p.m. at the Church of St. Luke and the Epiphany, on 13th street between Pine and Spruce in center city Philadelphia.
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