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MAPP says no to PWAs in planning process
Milan resigns, condemning MAPP report
City Council questions Prevention Point project
Studies says lesbian HIV risk underestimated
PCP sometimes mistaken for TB: study
PEHAAP, which MAPP has said should be allocated several million dollars to enhance capacity of minority organizations to deliver AIDS services, is an outgrowth of the 8th District AIDS Task Force, put together by West Philadelphia state senator Hardy Williams in November.
In a February 11th letter advertising the meeting, Williams called PEHAAP "the recognized planning vehicle for the African American community."
The African American service providers prevented from participating in PEHAAP included several who had earlier been part of the planning group, and some of which had, in fact, been invited to the meeting by MAPP executive director James Roberts. MAPP provider groups prevented from entering the meeting, held at Presbyterian Hospital, included BEBASHI, The Craig Foundation, We The People, Ecumenical Information AIDS Resource Center, Colours, and Parents Against Drugs. WTP, EIARC and Colours each had been invited to the meeting.
Philadelphia HIV Commission Manager Sonya Hunt-Gray was permitted to attend the meeting, but co-conveners of the HIV consumer caucuses of both the Commission and The Philadelphia AIDS AIDS Consortium were not.
The PWA group which sought to participate in PEHAAP included several members of We The People and other people living with HIV/AIDS. When they asked what PEHAAP would do if they tried to enter the meeting room, Williams spokesperson Barbara Chavous said "we will kick you out."
The incident highlighted growing concern among African American people living with HIV/AIDS that the MAPP-sponsored process is dominated by a small group of providers and political figures and is unresponsive to the real needs of PWAs.
Roy Hayes, co-chair of the TPAC HIV Consumer Caucus, former MAPP Steering Committee member, and an advocate for African American PWAs for ten years, said he was "personally hurt" by PEHAAP's decision. "We've spent years trying to get people to pay attention to us. We thought that a group which says it wants to help African American people living with AIDS would be more willing to listen. Instead they say they want to 'kick us out.'"
"Nobody chose who belongs to PEHAAP or MAPP except themselves," Hayes continued. "We are not giving up on the hard-won right of PWAs to have real power in who gets money to help us, black or white. They've proven we can't trust them. They have no right to speak for us or for the African American community. We have to do our own thing."
Hayes said that the dispute was not a race issue. "We've always said the same thing. No one should be able to make decisions about our lives behind closed doors. We have a right to be there and we will fight for it."
Melody Walker, housing counselor for We The People, said Williams asked at the incident "why he had never heard of We The People until now." We The People is a 4,000-member coalition comprised primarily of low-income, African American people living with HIV disease and a major service provider in the African American community. Walker said her response to Williams was, "Why haven't we heard from you until now?"
According to Hayes, MAPP executive director James Roberts and associate director Gerald Wright supported the decision to exclude the PWAs and the other groups. One Day At A Time executive director Steve Pina supported Hayes' participation in the meeting because of his long-time involvement in MAPP.
Williams said that the meeting was "by invitation only," and that he would be willing to convene a separate meeting to hear from the group as well.
Most MAPP member organizations -- including those who attempted to attend -- had not been invited to the meeting. It was unclear who had received an invitation.
WTP's Walker said that "you don't make decisions about people's lives 'by invitation only.' This is not a banquet. This is serious business."
Joe Cronauer, WTP executive director, was the only white PWA who participated in the effort to attend the meeting. He also serves as President of the Philadelphia AIDS Consortium.
Cronauer said that PEHAAP's decision was ironic, especially since the AIDS Consortium recently developed a priority-setting process which relies directly on PWAs for the first time.
"No group has done a more effective job of making clear the importance of listening to African American people with HIV in making decisions than We The People," said Curtis Osborne, WTP Life Center Coordinator. "We've always supported the agenda for increasing funding for minority organizations, and our support for that principle is not diminished. But it appears that PEHAAP and MAPP don't care enough about us for us to support them in that role."
Osborne said that We The People's African American members and others were working with other African American groups to develop a "real agenda created from a diversity of African American PWAs and service providers for what needs to happen about AIDS in communities of color. We're sick and tired of the politics. We will no longer be silent on this issue."
David Fair, who last week produced a controversial report on the distribution of federal AIDS funds in minority communities, told fastfax he agreed that PEHAAP would not work as an effective AIDS planning process. "I'm relieved to finally be able to say that my work is not, and has never been about PEHAAP, MAPP or any other provider. My only commitment is to do what I can to help PWAs get the power they have a right to. I'm tired of being used by people who don't have the best interests of PWAs or their community at heart,"
PEHAAP and MAPP have betrayed their real intentions, Fair said. "When you turn your backs on the people you claim to be there to help, your motives have to be questioned. In seventeen years of advocacy, I have never heard of an AIDS services planning body that refuses to allow PWAs to participate. It shows how morally bankrupt PEHAAP really is. We need a truly representative, PWA-focused African American planning process if we really want to see real services developed and real people getting them," he said.
Milan, who had held his post for 20 months, was the sixth AACO director since 1987. He had no public comment on his resignation other than to release a copy of his letter to Health Commissioner Estelle Richman announcing his action.
In his letter, Milan noted that under his leadership, minority participation in AIDS planning processes had increased dramatically. He severely criticized the MAPP report, saying that its definition of "minority" organization was faulty and that the report was "replete with conditions, caveats and self-serving conclusions that make reasoned critique of it worthless."
In a separate statement issued by Richman, she called the report "inaccurate and inflammatory."
Criticism of the report, which MAPP had requested as part of a separate African American planning process it said was required by what it has called the "failure" of the city's HIV Commission, focused on the definition of "minority" and the characterization of the city's health center network, which receives Ryan White funding, as "white." Milan, who like Richman is black, said he was insulted by the characterization.
Milan also leveled angry criticism at David Fair, who was requested to do the analysis by MAPP, although he did not name him in his letter of resignation. Milan said he had been undermined from within because Fair now works as administrator of a program affiliated with the Health Department as a consultant.
Milan, who is HIV+, said in his letter that he did not "intend to devote previous time or T-cells" to the effort to defend himself, and that he would not "administer a system where political and racial pressure and devious acts prevent people and acts of good will from flourishing."
Most AIDS service providers and activists expressed disappointment at Milan's decision, although supporting Milan's desire to take care of his own health. The Consumer Caucus of the HIV Commission called for him to reconsider his decision, and asked him to join the HIV Commission if he decided not to seek to return to his job. The full Commission also asked him to reconsider his resignation.
Fair, who authored the report, said in a statement that he had, in a phone call and a letter, discouraged Milan from taking this action and that MAPP's report was not directed at either Milan or Richman individually. He said that the debate over racial allocation of AIDS funding had been going on for over ten years, and that his report did not place blame or censure on the current AIDS leadership. Fair said that he applied the standards required by MAPP, using federal definitions of "minority" authorized by the U.S. Centers for Disease Control, to the analysis he conducted and had not produced the report as a personal statement or to undermine Milan's leadership. He quoted his report as specifically stating that it was not intended to indicate that "the best interests of people living with HIV/AIDS would be well served (or even better served) by a minority provider, or that HIV/AIDS funding should be distributed solely on the basis of the race of the provider agency leadership." He said that the Health Department was "over-reacting" to information which, although not so detailed, has been a major subject of debate in AIDS allocations since the system began.
Fair also said that he believed that political pressure from elected officials reacting to AIDS allocations was responsible for Milan's "apparent belief that he was not going to be able to do his job. Those political interventions exist beyond you, me or anybody else," he said. "We need everyone, including Jesse, to help make sure that PWAs don't suffer because of them. If we'd only be responsive to communities of color in planning and allocations, the politicians would go away."
Health Commissioner Richman has made no public comment on her plans for the future of AACO leadership in light of the week's events. Some AIDS advocates have said they are fearful that community-based planning for AIDS services was threatened by the political intervention of elected officials and some AIDS groups, and that the progress made under Milan's leadership in involving people living with HIV/AIDS, particularly those from communities of color, might be undermined if money is allocated to meet separate political objectives.
City Council questions Prevention Point project
Members of City Council grilled city health commissioner Estelle Richman and her substance abuse program director, Mark Bencivengo, last week about the city's support for Prevention Point, a syringe exchange program operating in North Philadelphia and Kensington.
The debate took place at the annual health department budget hearings in City Hall.
The issue apparently arose after a complaint from a neighborhood resident to City Councilman Frank Rizzo, Jr. The Councilmembers did not call for de-funding of the program, but questioned its effectiveness as an HIV prevention tool. Citing concerns that needle exchange encourages continued addiction, Council President John Street asked Bencivengo why the program did not simply pay addicts for their used needles, without giving them replacements.
It was unclear whether the criticism would affect future support for Prevention Point. City funding is used for the program because state and federal allocations prohibit funding such programs with traditional funding sources.
While some local elected officials continue to oppose needle exchange strategies, Federal health officials last week endorsed them, although stopping short of calling for the use of federal funds for them.
"Needle exchange programs can be an effective component of a comprehensive strategy to prevent HIV and other blood-borne infectious diseases in communities that choose to include them," Secretary of Health and Human Services Donna Shalala said in a report released Tuesday. Last week, a National Institutes of Health conference also backed needle exchange as an aspect of AIDS prevention.
After an independent review of a few dozen pilot projects and scientific research programs, Shalala said there was evidence that needle exchange could slow the spread of HIV among drug users, their partners and children. One study, at Yale University, said infections could drop by a third.
Needle exchange has been controversial since the idea surfaced early in the AIDS epidemic, when it became clear that drug users were at high risk of contracting HIV and spreading it to their sexual partners and unborn children.
Critics of needle exchange have charged that it is tantamount to sanctioning intravenous drug use and that it would aggravate the drug problem in a population already at risk. Federal funds cannot be used for these programs, outside a pilot project context.
Backers said carefully designed exchange programs can slow the AIDS epidemic and also serve as outreach points to educate drug users and draw them into treatment programs.
Clues on HIV resistance found
Researchers at the University of Texas have found preliminary evidence of a way that immune system cells may resist infection with HIV, providing clues as to why a small number of people seem less susceptible to HIV.
The research, reported at the AAAS meeting in Seattle, is the first to suggest that the virus can sometimes be stopped after it has invaded white blood cells called lymphocytes.
"People can get infected, but the virus does not appear to spread well," said Miles Cloyd of the University of Texas Medical Branch in Galveston. Laboratory experiments with blood samples from more than 50 healthy volunteers who were exposed to HIV found that in as many as one in six cases the virus entered the lymphocytes and began duplicating its genetic material but did not complete the process.
More research is needed to confirm that a gene is responsible for the apparent resistance and to study the mechanism in larger groups of patients. Cloyd says he has "strong data" involving two homosexual men who were temporarily infected with HIV but later showed no signs of the virus.
Two other types of genetic resistance have been identified. In one, HIV can be blocked from entering vulnerable immune cells in resistant individuals who do not carry a key receptor, known as CCR5. The second involves combinations of protective immune system genes.
Studies say lesbian HIV risk underestimated
"The good news is that our research suggests that, as generally believed, most lesbians do not face a high risk of HIV infection," Dr. Susan Cochran of UCLA said in a recent university press release. "However, there is a smaller group of lesbians, who tend to be young and still may be unsure about their sexuality, who engage in activities that may put them at risk."
Dr. Cochran and colleagues surveyed more than 350 lesbians between the ages of 18 and 25 who resided in Los Angeles County. They found that 26% reported having sex with men in the previous year and 19% reported having sex with a homosexual man in the past 3 months. "The partners tend to be the people they socialize with, who are often young gay men."
In a second nationwide survey, involving more than 8,500 lesbian and bisexual women, Dr. Cochran found that respondents most likely to report having sex with a man in the previous year were younger, less educated, more likely to describe themselves as bisexual and less likely to be in a lesbian relationship. Black women were also more likely to report recent heterosexual activity. Overall, 12% of the respondents reported engaging in heterosexual sex in the previous year.
"What we don't know is what is the best way to target these young lesbians for educational programs," she said. "It may be best to target them as a part of IV drug users and other groups. Or it may be best to target through intervention that identifies them as lesbians. We need to test methods to determine what works best."
PCP sometimes mistaken for TB: study
by Jody A. Charnow
Medical Tribune News Service
Pneumocystis carinii pneumonia, common to people with AIDS, can mimic tuberculosis, according to a new report.
If doctors confuse the two, people with AIDS may receive inappropriate treatment and suffer prolonged illness.
In the Feb. 10 issue of Archives of Internal Medicine, researchers at the University of Southern California in Los Angeles describe four men who were found to have Pneumocystis carinii pneumonia (PCP) after initially being treated for tuberculosis (TB).
The four patients, all men with AIDS, had symptoms that included a cough, fever and chills, which also are symptoms of PCP. But these patients also had chest X-rays that revealed lung changes characteristic of TB, but not of PCP, said researcher Dr. Michael P. Dube, an assistant professor of medicine at USC.
The researchers also described a fifth male patient with AIDS whose PCP went undiscovered for three months. The patient had an infection with Mycobacterium avium complex (MAC) bacteria, and he had chest X-rays that showed lung problems that doctors attributed to MAC infection, Dube said.
Doctors decided to test for the Pneumocystis carinii organism when the four patients with suspected TB did not respond to treatment with anti-TB drugs, and chest X-rays of the patient with MAC infection revealed worsening lung problems, Dube said.
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