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News That Matters to People with HIV/AIDS

for the week ending March 24, 1996

HIV Commission thwarts effort to limit community role

Federal officials to meet with Philadelphia blacks on AIDS crisis

National Academy of Sciences endorses syringe exchange

Hyperthemia treatment safe in patients with advanced HIV

Senate votes to repeal new HIV ban

Patient sues hospital for rooming him with HIV+ man

S.Africa insurer offers policies to HIV+ people

Salk vaccine trial begins

FDA delays action on human growth hormone

TPAC agrees to amend RFP, hires interim director

HIV Commission thwarts effort to limit community role

At what was billed a joint meeting of the city's new HIV Commission and its subcommittee called the CARE Committee, heated debate erupted at the announcement that the Commission Co-Chairs, Dr. Ted Kirk and Guy Weston, had been unilaterally appointed by Health Commissioner Estelle Richman to also serve as the CARE Committee Co-Chairs.

At the meeting AACO Director Jesse Milan said that the structure and functioning of the CARE Committee was "on the table" for discussion, although at the beginning of the meeting a piece of paper demonstrating a structural change in the position of CARE was passed around which, in addition to being unable to appoint its own Co-Chairs, took away the CARE Committee's ability to meet and function independently.

The CARE Committee was established as a separately functioning subcommittee of the HIV Commission last Spring when Commissioner Richman announced that the function of Title I Ryan White Planning Council was being taken away from The Philadelphia AIDS Consortium after months of criticism about its inherent conflicts of interest and insensitivity to the concerns of people of color and people with HIV/AIDS.

Richman created the HIV Commission and the CARE Committee in an effort to foster greater community involvement in the planning process and restore public confidence in AIDS planning and allocations of city, state and federal funds.

The attempt to change the structure this week's Commission meeting would involve stripping from the CARE Committee, which was formed last fall but still has never met as a group, the ability to ever meet as a group independently as well as ever being able to appoint its own leaders from the community as Co-Chairs.

Despite AACO's efforts to reduce the role of the CARE Committee, a two-part motion sponsored by Commission HIV+ representative Mark Davis was passed unanimously by the Commission which gave back the right to the CARE Committee to meet independently. It also requests Commissioner Richman to vacate her appointments of the CARE Co-Chairs in favor Co-Chairs which would be appointed by the CARE Committee itself.

Although this week's Commission meeting was billed as a joint meeting, CARE Committee members were not allowed to vote or even sit around the table with the Commission members, but were instead assigned seats at the edge of the room.

At the meeting a variety of AIDS activists and service providers, some of whom serve on the Commission, joined in opposition to the idea of CARE not meeting independently, generally expressing concern that such a move would remove a valuable layer of community involvement in the process and therefore give the city a measure of control which goes against both the spirit and letter of the law which regulates the functioning of Ryan White Planning Councils.

Most common among the concerns was that the city was required to stay at "arm's length" from the planning process, which the national Ryan White legislation calls a "wall" between the grantees (in this case, the city of Philadelphia) and the planning councils. The planning councils -- in the Philadelphia area, the HIV Commission -- composed of members of HIV-affected and infected communities, have control over the planning and priorities setting processes which guide the allocation of Ryan White AIDS dollars.

Commission members cited several examples of the city not maintaining that "wall," including the attempt to eliminate the CARE Committee as an independently meeting body, the unilateral appointment of the CARE Co-Chairs by the city, Commission/CARE staff who reported to the city instead of the planning group, and the fact that the Commission and its committees have not yet been allowed to work with the city in determining how to use the Commission's own planning budget, which is about three quarters of a million dollars annually.

The Commission charged its Co-Chairs to deliver its requests to Commissioner Richman. Several activists at the meeting, including We The People's executive director Joe Cronauer, vowed to "do whatever it takes" to make sure that the process is responsive to the community, not the city, but also expressed optimism that Commissioner Richman, who designed the original planning system, "would move in favor of the Commission's and the community's wishes."

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Federal officials to meet with Philadelphia blacks on AIDS crisis

Top Clinton Administration officials -- including those responsible for allocating over $20 million in federal AIDS funding to the Philadelphia region -- will be in Philadelphia on Saturday, March 30th, to hear from local African American community leaders about the AIDS crisis.

The meeting, which is open to the public, will be held from 10 a.m. to 1 p.m. at Temple University's Anderson Hall Auditorium, on Berks Mall between 11th and 12th Streets.

Among the federal officials participating in the "Federal Minority HIV/AIDS Conference" are Dr. David Satcher, director of the U.S. Centers for Disease Control and Prevention (CDC); Dr. Eric Goosby, director of HIV/AIDS policy for the U.S. Department of Health and Human Services; and Brenda Gales, another CDC official. HHS secretary Donna Shalala and White House AIDS Policy Director Patricia Fleming have also been invited, but had not yet confirmed their participation.

The meeting will be hosted the Minority AIDS Coalition, a coalition of over 20 neighborhood based organizations serving the African American, Latino and Asian communities in Philadelphia, and One Day At A Time, the city's largest substance abuse recovery program, in collaboration with U.S. Rep. Thomas Foglietta (Democrat-Philadelphia).

In Philadelphia, almost 70% of AIDS cases reported over the past year have been African Americans, with an additional 12% in other minority racial groups. Only 1 in 5 new AIDS cases in Philadelphia are white, according to data released earlier this month by the Philadelphia Department of Public Health.

The Minority AIDS Coalition provides a wide variety of services related to the HIV/AIDS epidemic in the city's communities of color, through the Minority AIDS Project of Philadelphia and Vicinity. Services include HIV prevention and education programs, case management, meals, substance abuse and mental health services, and advocacy activities. One Day At A Time (ODAAT) has provided housing, substance abuse counseling, risk reduction education and practical support services to low-income people with HIV/AIDS in Philadelphia for almost ten years.

"AIDS in Philadelphia is decimating our communities -- especially our young people, sexual minorities and women -- yet most of the federal attention to AIDS in Philadelphia has been directed elsewhere," said Steven Pina, executive director of ODAAT.

Noting that members of the local Minority AIDS Coalition were excluded from participation in the Philadelphia HIV/AIDS Commission established last year by the health department, Gerald Wright, president of MAC, said that the March 30th meeting will be the first time that people from the communities most affected by AIDS will be able to talk directly to federal officials.

The HIV/AIDS Commission is charged with recommending how the city spends almost $15 million in Ryan White CARE Act Title I funds as well as city and state AIDS funding.

"The efforts of the federal government -- which under President Clinton has always recognized the priority for developing HIV/AIDS services in minority communities -- have not been working," Wright said.

"We're hopeful that we can have a dialogue with federal officials at this meeting which will help them better understand why their money is not getting to the people who need it most, and that we'll leave the meeting with a more direct relationship that better meets our needs as a community," Wright said.

"We have been consistently frustrated in our efforts to communicate directly to those on the federal level about what actually happens to their money when it comes to our region," ODAAT's Pina added. "While African Americans are the most heavily impacted population when in comes to AIDS, less than 20% of money for services to people with AIDS is spent in minority-run projects."

Pina said that One Day At A Time's citywide network of neighborhood AIDS resource centers -- called "extended service centers" -- have traditionally been ignored in allocations of federal AIDS funding because they are not linked with big AIDS organizations based in center city.

"The Clinton Administration will finally hear the truth about AIDS among African Americans in Philadelphia at this meeting," Pina said. "We're deeply grateful to Congressman Foglietta for his foresight in making this meeting happen."

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National Academy of Sciences endorses syringe exchange

A National Academy of Sciences study, conducted by 15 experts at Congress' request, has found that syringe exchange programs can reduce the spread of HIV among drug users without encouraging drug use.

The panel reviewed all available research and released its report, recommending in Sept. 1995 that the ban on the use of federal funds for exchange programs be lifted. The report also called for states to rescind laws that restrict the sale and possession of syringes.

According to the report, injection drug use accounts for a major proportion of the new HIV infections in the United States, and sharing of injection equipment is the main mode of transmission among addicts. The authors of the report also recommend that the Surgeon General should make the requisite determination to lift the current ban on using any federal funds for needle exchange programs.

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Hyperthemia treatment safe in patients with advanced HIV

The results of the first FDA-approved trial of whole-body hyperthermia designed to treat people with AIDS with Kaposi's sarcoma indicate that this procedure is safe and may have a future therapeutic role in HIV infection.

A multicenter team, led by Dr. C. R. Steinhart of Mercy Special Immunology Services in Miami, evaluated the safety and efficacy of whole-body hyperthermia in six homosexual men with AIDS. The patients were between the ages of 20 and 50 years of age, had CD4 counts of less than 200 mm3 and had at least three Kaposi sarcoma lesions. None of the patients had opportunistic infections and none were receiving antiretroviral therapy or chemotherapy at the time of the procedure. The subjects underwent one hour of whole-body hyperthermia at 40 or 42 degrees Centigrade. No adverse side effects were observed during treatment.

While the effects of whole-body hyperthermia treatment were transient, Dr. Steinhart was "...encouraged by some of the immunological and virological results. KS lesions partially regressed immediately following whole-body hyperthermia in all subjects but returned to pretreatment status in five of six patients at one week." Dr. Steinhart reports "...a statistically significant reduction in HIV RNA immediately after cool-down in the 42 degree Centigrade treatment group before returning to pretreatment levels at 1 week post-whole-body hyperthermia."

Based on these results, Dr. Steinhart believes that "...whole-body hyperthermia is safe in subjects with advanced HIV disease and that it may have a role in treating HIV infection. A larger controlled trial involving two treatments in less [severely] immunocompromised subjects is currently in progress to test this hypothesis."

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Senate votes to repeal new HIV ban

The Senate voted Tuesday to repeal Congress's new law requiring the dismissal of military people infected with HIV.

The Senate approved the repeal by voice vote and with no debate as part of a comprehensive federal spending bill. The House would have to agree for the repeal to take effect.

President Clinton signed into law a $265 billion defense bill containing the new HIV ban but announced that he opposed the ban and would not fight any court challenges to it.

Top defense officials including Defense Secretary William Perry and Gen. John Shalikashvili, Chairman of the Joint Chiefs of Staff, also opposed the ban, saying military people should be allowed to serve as long as they are fit.

The Defense Department estimated 1,049 military people are infected with HIV. Backers said HIV-infected Lakers basketball star "Magic" Johnson proves HIV is not disabling before AIDS is contracted.

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Patient sues hospital for rooming him with HIV+ man

A Tennessee appeals court has refused to dismiss a lawsuit filed against a hospital in which a former patient claimed damages for not being informed of the HIV-positive status of his hospital roommate.

Judge Henry F. Todd ruled that the policy of housing HIV-positive patients with HIV-negative patients was appropriate. However, Judge Todd said the complaint "...alleges that Mr. Bain was placed in a room with an HIV patient secretly; that is, without disclosing to Mr. Bain that his roommate was infected by HIV." Judge Todd ruled that this latter issue must be decided by a jury.

In Bain v. Wells, Jerry Bain, a former patient at an alcohol and drug rehabilitation center in Lebanon, TN, occupied a room with an individual who was HIV-positive. Mr. Bain shared a toilet with the roommate, who had sores on his buttocks, and accidently used his roommate's razor. The roommate later died of AIDS. Although he tested negative for HIV antibodies, Mr. Bain sued his physician and the hospital for "...damages arising from intentional infliction of emotional distress and loss of consortium."

The plaintiff's physician, Dr. Wayne Wells, prevailed in an earlier summary judgment, but the court ordered that the case against the hospital and its owners proceed to trial.

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S.Africa insurer offers policies to HIV+ people

South African life insurer Metropolitan Life Ltd. has launched what it says is the world's first life insurance for people infected with HIV.

The company said the service, designed for applicants who had been refused life coverage because of HIV infection but who did not yet show AIDS symptoms, could expand its policyholder base by one million people.

"We are the first company in the world offering life cover on a commercial basis to HIV-positive individuals," general manager marketing actuary Riaan van Dyk said.

He said an attempt had been made in France to provide life cover for HIV-infected people, but it had been a non-profit government-driven project involving the pooling of funds from a number of insurers. "It did not work very well," van Dyk said.

He said Metlife estimated that about 1.5 million people in South Africa were infected with HIV. Of these, some 80 percent or one million would qualify for the new product.

In order to qualify for Metlife's cover the applicant had to be between the ages of 15 and 55, asymptomatic and in stage one or two of infection according to World Health Organization definitions, van Dyk said.

He said the policy, which had been designed in consultation with HIV and AIDS interest groups and lobbies, had been launched to satisfy market need as the epidemic in the region worsened.

"There is a growing AIDS epidemic in Africa. We are in a different league to the rest of the world and South Africa is just the tip of the iceberg," he said.

"We estimate that in the next 10 to 15 years, 20-25 percent of South Africa's economically active population will be HIV-positive. Considering the eventual outcome of the epidemic, it makes business sense to be in this market."

Medical experts have said that between 18 and 27 percent of the entire South African population of more than 41-million will be infected with HIV by 2010.

Metlife had considered developing an AIDS-related product for over four years, and now had enough information to make it financially viable, van Dyk said.

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Salk vaccine trial begins

A nationwide clinical trial of a therapy that fights HIV by stimulating the immune system finally began this week after years of advocacy by people living with HIV, especially in Philadelphia.

This is the largest trial of such a treatment ever conducted. Up to 3,000 HIV-infected individuals will participate in this trial testing Remune, a therapy proposed by Dr. Jonas Salk, who developed the first polio vaccine.

This therapy could provide physicians with an entirely new weapon against HIV that complements the anti-HIV drugs now available. Remune works in combination with antiviral drugs to attack HIV, the virus which causes AIDS. Antiviral drugs get into infected cells to shut down the machinery that manufactures HIV. Remune is designed to direct the immune system to attack and kill these infected cells. These two complementary weapons may be important in the fight against HIV. Remune is the first treatment designed to stimulate the immune system of HIV- infected patients to move into an FDA approved Phase III trial, the final stage of clinical trials.

The Phase III trial will involve HIV-infected individuals treated at more than 50 medical centers around the United States, including Philadelphia, and is designed to determine the effectiveness of Remune in slowing the progression of HIV infection to AIDS. This trial is being led by Dr. James Kahn of the University of California, San Francisco and Dr. Stephen Lagakos of Harvard University. Remune is being developed by The Immune Response Corporation (Nasdaq: IMNR), a company co-founded by Dr. Jonas Salk.

This trial will be conducted in individuals with CD4 T cell counts between 300 and 550, the stage of the disease during which opportunistic infections generally begin to appear in HIV-infected individuals. Remune is designed to stimulate an individual's immune system to attack HIV-infected cells and thus slow the progression of the disease.

"This clinical trial may become a model for future HIV therapy development. The trial is designed to allow patients to continue all current therapies including the new protease inhibitors and other approved HIV treatments," Dr. Lagakos said. "It will determine the ability of Remune to improve upon the current standard of care for HIV infection."

Dennis J. Carlo, Ph.D., president and chief executive officer of Immune Response said, "Dr. Salk had hoped to live to see the final results of this trial, which he believed would have provided a significant benefit for individuals infected with HIV. In working toward completing his mission against AIDS, we also expect to begin clinical trials in HIV-infected children to treat the youngest victims of this disease."

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FDA delays action on human growth hormone

The U.S. Food and Drug Administration has postponed its decision on whether to approve Serono Laboratories Inc.'s growth hormone to prevent AIDS-related wasting.

While an FDA advisory panel voted on March 1 to recommend against approval, citing safety and efficacy concerns, AIDS activists have been pressuring the federal agency to approve the drug. Serono Laboratories, a subsidiary of Switzerland's Ares-Serono SA, said through its spokeswoman Gina M. Cella that it is in "ongoing discussions with the agency." Serono claims its drug has demonstrated effectiveness in preventing loss of lean body mass with few adverse side effects.

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TPAC agrees to amend RFP, hires interim director

The Philadelphia AIDS Consortium board of directors adopted a motion from We The People representative Joseph Cronauer last week, amending its recent "Request for Proposals" for the allocation of over $1 million in state funding for prevention and education activities.

Although the board had directed that TPAC education funding be allocated according to a set of specific priorities, the RFP did not indicate that some populations and interventions had priority over others in terms of the allocations. Instead, the RFP listed communities affected by the HIV epidemic "in the order adopted by the board," rather than "in priority order," as the original board motion had stated.

The issue was considered important by many TPAC board members, because an earlier allocation process, which was supposed to follow the same priorities, resulted in most proposals addressing the highest priorities not getting funded, while proposals for efforts to lesser priorities received significant funding.

Under the provisions of the motion adopted by the board this week, all organizations who received the original RFP will receive a letter clarifying the language of the RFP, as will the city's Resource Allocations Advisory Committee (RAAC), which will review the proposals.

Board members were also concerned that the RFP was issued by TPAC without prior discussion by the board, and that it includes other priorities -- including very specific requirements about numbers of condoms permitted to be distributed, numbers of individuals to be contacted, etc., which had never before been seen or agreed to by the board.

In other action, the board agreed to postpone further discussion on its future until an April meeting, at the request of several board members who could not be present. The April meeting will discuss such issues as whether TPAC wants to continue as the Ryan White Title II Planning Council for the state health department, whether it will continue to make decisions as to which agencies are funded with state money, and the composition of its re-organized board.

Lawrence J. Hochendoner, from Harrisburg, was formally approved by the board as the interim executive director of TPAC, at the meeting. Hochendoner, who has no prior AIDS experience, is supposed to serve in his post for six months, during which time the transition to TPAC's new identity is scheduled to be completed. TPAC "acting co-president" Rashidah Hassan also announced at the meeting that she would be resigning from the TPAC board on April 15th, but that she intended to continue to work with Hochendoner in his efforts to consolidate TPAC's activities for the future.

Littrell to leave ActionAIDS

Meanwhile, ActionAIDS executive director Ennes Littrell has confirmed that she intends to resign from her post by the fall of this year. She said that ActionAIDS will conduct a national search for her replacement in that period.

Littrell has been director of the region's largest AIDS service organization since 1988. Under her leadership, ActionAIDS has grown from an organization relying almost solely on volunteers and a minimal budget to a major social service agency, serving several thousand people with HIV/AIDS annually with a staff of close to fifty and a budget of over $5 million.

Littrell is the latest of a string of early AIDS activists who have recently resigned from their posts. Her brother Jim Littrell, one of the founders of ActionAIDS, resigned as director of the Philadelphia AIDS Consortium last year, as did Rashidah Hassan, founder and executive director of BEBASHI. David Fair, founder of the city's AIDS Activities Coordinating Office, resigned as We The People executive director this month.

Former AIDS Task Force director Fran Stoffa and former Congreso director Carmen Bolden, both early AIDS program directors, resigned their posts over a year ago after criminal charges for theft were filed against them by the Philadelphia district attorney.

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