Alive & Kicking!'s fastfax

News That Matters to People Living with AIDS/HIV

published by We The People Living with AIDS/HIV of the Delaware Valley

Issue #114: March 2, 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 drfair@critpath.org and type the message SUBSCRIBE in the message section. Sources for some information in this issue include the Medical Tribune, Reuters Health Information Service and the Philadelphia Inquirer.

Region gets 45% increase in Ryan White supplemental funds

PWAs prioritize new TPAC spending

Rizzo attacks Prevention Point

US may apologize for Tuskegee experiment

Clinton frees Medicaid MDs on treatment options

Studies show health improves with treatments

Glaxo moves ahead on new protease inhibitor

Region gets 45% increase in Ryan White Supplemental Funds

According to unconfirmed reports from Washington, DC, Philadelphia has faired very well in this year's competitive application to receive federal Title I Supplemental Ryan White funds to provide services for people living with HIV/AIDS in the region, reportedly receiving a 45% increase over last year's Philadelphia Supplemental award.

This year's unconfirmed Supplemental allocation to Philadelphia is $6.4 million, up from $4.4 million last year. Last year Philadelphia took a major hit in its Supplemental award, losing $1.8 million or a 23% decrease from the prior year's award.

Federal Ryan White allocations provides two forms of funding directly to the Philadelphia region for AIDS services. The basic award is based on a formula which includes factors such as AIDS case load within a region. This award, called a formula award, is non-competitive. The region receives $7.0 million in formula Ryan White this year, up from $6.02 million in 1996 and $4.12 million in 1995.

The supplemental award, however, is based on a competitive process between qualifying cities across the nation who have a high reported case load of AIDS within their region. After last year's loss of $1.8 million in supplemental money for the Philadelphia region, the city's AIDS Activities Coordinating Office (AACO) and The Philadelphia EMA HIV Commission, the region's Ryan White Title I planning council, decided to work together in preparing this year's supplemental application, along with consultants hired from Washington, DC. Mick Maurer and Mark Davis, now the current Commission Co- Chairs, were at that time the Co-Chairs of the Commission's Supplemental Application Committee.

This year represents the first time that AACO has allowed such a high degree of community and consumer input into the preparation of the supplemental application, which has apparently resulted in a major increase in funding for the region.

It is unclear how the new money is to be distributed throughout the community, since the money will be available for services by the beginning of April. Normally the money would be distributed through a competitive process between local AIDS service providers who would respond to a Request For Proposals (RFP) issued by the city where the provider would ask for some of the available money to support services to people living with HIV/AIDS they were proposing.

Since that process usually takes several months to complete, there has been no word how it would be distributed this year to meet the new spending priorities set forth earlier this year by the Commission.

Some members of the commission contacted by fastfax expressed elation at the prospect of receiving much-needed additional funds in the region, and said that how those funds get distributed will be at the top of the Commission's next meeting agenda.

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PWAs prioritize new TPAC spending

Over 150 people living with HIV/AIDS showed up at a packed meeting on February 25th to decide how The Philadelphia AIDS Consortium (TPAC), this region's Title II Ryan White Planning Coalition, would prioritize spending of over $400,000 in new Ryan White care dollars. The consumers, after going through an education process at the meeting to learn about what services can be funded with Ryan White dollars as well as where current dollars are being spent, decided on five priorities which will guide the allocations of the new money. The five priorities chosen were, in order, emergency financial assistance, extended access case management, translation/interpretation, respite care, and food services.

The process for priority setting, the first all-consumer process ever used in this region, was the result of a February 13th TPAC Board of Directors meeting where it was decided to hand over the responsibility for setting spending priorities for new state AIDS dollars to consumers (people living with HIV/AIDS or the parent/legal guardian of a child living with HIV/AIDS).

The unprecedented move was proposed by the TPAC Priorities Committee, co-chaired by Alicia Beatty of The Circle of Care and Michael Hinson of The Colours Organization, who reported to the Board that the Priorities Committee unanimously supported the move of priority setting responsibility to the consumers of services who are supposed to be served by those dollars. Also unanimously supporting the move was the TPAC Consumer Caucus. Some consumers reported problems at the consumer priorities setting meeting, including a lack of consideration given to suburban consumers by city consumers. Additionally, despite outreach efforts there were no Asian/Pacific Islander (API) consumers who attended the meeting, reflecting the concerns of API advocates who were concerned that cultural barriers would keep API consumers from attending.

Recognizing access difficulties associated with this first-ever all consumer process, the TPAC Priorities Committee subsequently authorized separate suburban consumer priorities meetings to be held in each of the suburban counties Chester, Montgomery, Delaware and Bucks and that these priorities would guide spending in the suburbs.

Additionally, the committee agreed to accept case studies recently done on approximately 20 APIs who are living with HIV/AIDS, and that priorities recommendations mentioned in these case studies would be "worked in" to the city's priorities. Details on how the API priorities might be "worked in" were not agreed upon by press time.

The next step for TPAC after priorities are set is for the Priorities Committee to recommend to the Board specific percentages of money to be spent on a given priority. After Board approval, a Request For Proposals (RFP) will be written and released to the community asking providers of services to send in a proposal describing their ideas on spending money to meet the priorities which the consumers have set. The money is expected to be released for services in July.1

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Rizzo attacks Prevention Point

At a recent City Council hearing on the Health Department's budget, Councilman Frank Rizzo launched a surprise attack against the city's needle exchange program, Prevention Point. At a prior City Council meeting, Rizzo expressed surprise at the size of Prevention Point project, which exchanged 700,000 sterile needles last year for dirty needles, which have the potential of harboring HIV and transmitting it to an IV drug user who shares the needle with a person who is already infected.

Although offering no proof, Rizzo claimed that the needles could be sold on the "black market," and that the program should be immediately suspended until an investigation is conducted.

The attempt met with resistance from twelve other council members, particularly Angel Ortiz, who pointed out that the program works, saves lives and the Health Department is doing a good job administering it.

A majority of the Council voted to table the discussion at the suggestion of Frank DiCisso, who retracted his initial support of the Rizzo move.

Councilwoman Joan Krajewski, who co-sponsored the resolution with Rizzo, asked that the Health Department come back to the Council and answer questions about Prevention Point before the March 27th when final approval of the Health Department budget is expected. Prevention Point is the region's only needle exchange program, and is dependent on the city for 70% of its funding.

Although recent studies of similar programs have shown a two-thirds reduction in HIV transmission among participants in needle exchange programs when compared to IV drug users who do not participate in such a program, it is still against the law to use State or federal funds to support such a program.

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US may apologize for Tuskegee experiment

A generation after it was learned that black men were used as guinea pigs for the study of syphilis in the infamous Tuskegee experiment, the government may be moving closer to a formal apology.

An open discussions of the government's deception in the famous experiment is believed to be critical to overcoming distrust in the African American community about AIDS. President Clinton's apology in 1995 to the victims of secret Cold War-era radiation experiments may have set the pattern, Dr. David Satcher, head of the Centers for Disease Control and Prevention, said in an interview.

"That's the kind of thing we would anticipate, but we don't know at this point what would happen," he said.

The Tuskegee experiment was conducted in Tuskegee, Ala., between 1932 and 1972. The government withheld treatment from 399 men with syphilis so they could study how it spreads and kills. The men weren't told they had the disease. Nor were they given penicillin after it became the standard treatment in 1947.

The study became public in 1972 with a story by The Associated Press.

To the black community, it was a betrayal that caused a distrust of public health officials that lingers to this day.

Dr. Louis W. Sullivan, former U.S. health secretary and now president of Morehouse School of Medicine in Atlanta, said it would take a monumental effort for the government to regain the trust of black people.

"This is not going to be easy and it's not going to happen overnight," Sullivan said. "Twenty years later, we are still wrestling with the damage that's been done. Science needs to be open."

Since 1973, the government has paid $10 million to a total of 6,000 victims of the Tuskegee experiment and their heirs in an out-of-court settlement of a class-action lawsuit. "It's unfortunate that the government has waited over 20 years after the litigation and over 60 years since it started to apologize," said Fred Gray, the Tuskegee attorney who brought the lawsuit. "If one does come, I hope they would make it in a proper fashion."

"Miss Evers' Boys," an HBO fictional movie that premiered on February 22, deals with the study. Satcher, whose agency took control of the Tuskegee study in 1957 from the U.S. Public Health Service, said the movie will bring pressure on the government to apologize to the victims and their relatives.

"Nobody is comfortable with the fact that this part of our history is being openly discussed again," he said. "There is a certain amount of pain we all feel." "This movie was made about the past, but it might as well have been the present," said Dr. James Curran, dean of the Rollins School of Public Health at Emory University in Atlanta. "It's really about 1997. The palpable distrust across the nation makes me think we have a ways to go."

At a showing of the movie in Atlanta this week, black health professionals said the HBO movie may hamper efforts to stop the spread of AIDS in black communities. "It will likely set us back 10 years as we try to get ahold of HIV," said Sandra McDonald, an AIDS educator. "It's up to us to gain back this trust before we lose more lives." "These people were human beings and they were treated like rats. What are we going to do to ease that?" said Ray Glover, 20, a black Atlanta resident who watched the movie.

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Clinton frees Medicaid MDs on treatment options

In his latest move to strengthen consumer managed care protections in federal health programs, President Clinton has prohibited "gag" clauses in physician contracts with Medicaid HMOs.

The clauses usually are used to keep doctors from letting their patients know of expensive treatments that may not be covered or cost-effective for the HMO.

Last December, the administration banned the use of such clauses in Medicare contracts. Clinton, who has criticized the clauses as an unwarranted interference in the doctor-patient relationship, also reiterated his support for legislation that would outlaw the use of the clauses by private health plans that treat non-Medicare and non-Medicaid patients. It is unclear how widespread the use of gag clauses is. The American Medical Association has complained that doctors have been disciplined by HMOs for discussing treatment options that aren't routinely covered. HMO officials, however, deny such claims, insisting that the only restraints on the patient-physician relationship ban doctors from criticizing their own plan. The American Association of Health Plans has issued a statement opposing gag clauses, saying that it supports full and open communication between doctors and patients.

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Studies show health improves with treatments

The results of two trials of ZDV/3TC combination therapy indicate that meaningful clinical changes accompany decreases in viral load and increases in CD4 cell counts, according to a multicenter group.

A decreased risk of disease progression and death correlate with higher CD4 cell counts in HIV-positive patients, explained Dr. Andrew N. Phillips of the Royal Free Hospital School of Medicine in London and colleagues. More recently, researchers have established HIV plasma levels as a useful predictor of clinical disease. However, the relationship between clinical benefits and these disease markers has not been well documented.

In the current report, members of the North American Lamivudine HIV Working Group evaluated the effects of combination ZDV/3TC treatment with patient HIV RNA levels and CD4 lymphocyte count. A total of 620 patients were followed for 1 year and the incidence of clinical disease was monitored.

They found that compared with controls, patients who received ZDV/3TC treatment maintained significantly lower HIV RNA levels and higher CD4 cell counts. In addition, these subjects progressed more slowly to clinical endpoints: the unadjusted relative hazard for progression to AIDS was 0.16 with ZDV/3TC, compared to controls.

Based on these results, the investigators conclude that improvements in HIV RNA and CD4 levels correspond with clinical benefits. "However, further analysis, based on additional trials of different agents, is required before the degrees of such concurrence can be estimated with confidence."

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Glaxo moves ahead on new protease inhibitor

Glaxo Wellcome has begun a Phase III clinical trial of the second generation protease inhibitor 141W94/VX-478 to treat HIV infection in adults. Vertex Pharmaceuticals and Kissei Pharmaceuticals are also involved in the development of this new drug.

About 240 HIV-positive adults will be enrolled in the trial, which will be conducted in over 30 sites in the U.S., Canada and Europe. The subjects, who will have CD4 cell counts greater than 200/cubic millimeter and HIV RNA counts greater that 10,000 copies/mL, will receive 141W94/VX-478 in combination with zidovudine (Retrovir) and lamivudine (Epivir), or zidovudine and lamivudine only.

A similar Phase III clinical trial with HIV-positive children is planned to begin in coming weeks, according to Vertex officials.

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