White House HIV Town Hall Meetings in LA & SF Oct 16, 18
Town hall focuses on L.A.'s battle with HIV/AIDS|
Advocates hope Sunday's event at Hollywood High School will help them gain more funding and more diversity in AIDS research.
John J. Duran, a lawyer and member of the West Hollywood City Council since 2001, was one of the first to join the Los Angeles Men's Study in 1984. In the mid-'80s, "everybody that I loved or had loved was dying," he said. (Genaro Molina / Los Angeles Times / October 15, 2009)
By Molly Hennessy-Fiske
October 16, 2009
John Duran was a young lawyer living in West Hollywood in 1984 when he joined what would become one of the nation's longest-running studies of HIV/AIDS.
"They were going to try to figure out what this thing was that was killing gay men," Duran said.
More than a thousand men signed up for the Los Angeles Men's Study, part of the Multicenter AIDS Cohort Study, or MACS, that also included 5,000 men in Chicago, Baltimore and Pittsburgh. During the next 25 years, the study generated scores of scientific findings as the group of mostly white, openly gay volunteers tested HIV-positive and sought treatment.
This week, with White House officials visiting Hollywood to discuss the administration's new national AIDS strategy at a town hall meeting, advocates reflected on the study's legacy as they prepared to call for more diversity in AIDS research.
As of last year, the population living with AIDS in Los Angeles County was 40% Latino, 35% white and 21% African American, according to the county's Department of Public Health.
When the L.A. Men's Study was proposed by Dr. Roger Detels, then dean of the UCLA School of Public Health, the population living with AIDS was far less diverse: 75% white, 13% African American and 11% Latino.
Detels started by recruiting gay student volunteers but wanted a bigger group. He posted ads in gay magazines and contacted gay activists and lawyers, among them Rand Schrader at the L.A. Gay and Lesbian Center in West Hollywood.
Detels told potential volunteers they would have to take blood tests, and submit to physical exams and surveys twice a year. Although their records would remain confidential, they would have to tell him their names.
Schrader, who had recently become the state's first openly gay municipal judge, was among the first to volunteer. Many others refused.
"This was the midst of the sexual liberation movement, bath houses were flourishing, gays and lesbians were seeing renewed levels of recognition in society and there was concern this would set us back," said Schrader's then-partner, Geo- Cities founder David Bohnett, who did not join the study.
Within about a year, Detels had recruited 1,647 volunteers, mostly middle-class professionals motivated by fear of the mysterious new disease.
Actor Dale Reynolds, 65, was living in West Hollywood, read about the study in Frontiers magazine and immediately signed up. "I had so many friends dying around me, I felt I really had to do something," Reynolds said.
Duran, then 25, joined the study at the urging of roommate Jon Stiller, also 25, who was working as an executive assistant.
Tests later showed that about half of the volunteers were HIV-positive.
When the first HIV test was developed in 1985, Duran, Stiller and Reynolds were tested through the study's UCLA clinic. Reynolds and Duran were negative. Stiller was positive, and he was devastated.
"I pledged to him that I would stand by him no matter what," Duran said.
All three continued to be tested for the study, Reynolds and Duran every six months, Stiller every three months.
The next year, the study began to show evidence that unsafe sex leads to HIV, which causes AIDS.
As Stiller got sicker, in and out of the hospital with infections, Duran admitted in his surveys to risky behavior, including unsafe sex.
"I was in a very dark place," he said. "Everybody that I loved or had loved was dying."
Reynolds remained HIV-negative but was attending more funerals, including one for an African American friend in Inglewood whose family insisted he died of cancer, not AIDS.
Stiller tried AZT and other antiretroviral drugs, but in 1992, he died. He was 33.
Schrader died a year later. He was 48.
By then, Duran and Reynolds had each lost more than 100 friends to AIDS.
Duran would walk through the heart of West Hollywood on Santa Monica Boulevard, haunted by the sight of AIDS patients with telltale purple Kaposi's sarcoma lesions. He figured it was inevitable that he, too, would be infected.
In 1994, Duran tested positive. His doctor told him he would not live to see the millennium. But he stayed in the study, started taking AZT and, later, protease inhibitors.
In the late 1990s, Detels realized some people were missing from the study -- African Americans and Latinos.
The percentage of Los Angeles County's AIDS cases diagnosed among white men dropped from about 56% to 34% from 1991 to 1998, while the percentage of cases among Latino men increased during the same period from 25% to 40%, and among African American men from 17% to 23%, public health surveys showed.
Yet only about 10% of MACS volunteers were minorities, mostly because researchers had recruited openly gay men. Many African American and Latino men who had sex with men did not consider themselves gay.
In 2001, Detels got permission from study organizers to recruit more minorities. This time, he contacted South Los Angeles churches and Latino AIDS groups. He added a testing clinic at Harbor-UCLA Medical Center in Torrance and paid volunteers $20 to $25 plus bus fare to attend appointments.
Researchers in the other three cities did similar recruiting, and within a year they had added 400 minority volunteers, doubling the percentage.
Phill Wilson, chief executive of the Los Angeles-based Black AIDS Institute, knew several black men recruited for the study. But he said the study remained "West Hollywood-centric."
The study now costs about $3.5 million annually and is funded through 2013, when it may end, Detels said, having run its course.
Duran, who was elected to the West Hollywood City Council in 2001 and has since risen to prominence as one of a handful of HIV-positive lawmakers, has seen the level of HIV in his blood become nearly undetectable. He still gets tested twice a year for the study.
In April, Detels and study staff gathered on a Sunday afternoon at Akasha restaurant in Culver City to honor surviving volunteers, 85% of the original group. About 400 men attended.
Volunteers mingled with researchers and discussed the study's results, including more than 1,000 research papers that detailed, among other discoveries, how men became infected with HIV, how long it took them to develop full-blown AIDS and why some resisted infection.
711 volunteers die
Detels took a banner that listed case numbers assigned to 711 local volunteers who died during the study. The group had a moment of silence in their honor.
But minority AIDS activists like Wilson wish the pool of volunteers had been more diverse and the results more useful for those they serve.
"What we are left with is the legacy of how HIV was initially mischaracterized" as a white, gay disease, Wilson said, noting a shortage of data concerning African Americans, who are more likely than whites or Latinos to become infected with HIV and die from AIDS.
The Office of National AIDS Policy is drafting a National HIV/AIDS Strategy for the first time, similar to strategies required for foreign countries to receive U.S. HIV/AIDS funding.
White House officials plan to release the strategy after gathering public input online and at town hall meetings. The strategy is expected to guide federal funding for HIV/AIDS research and programs.
On Tuesday, Wilson met with a group of AIDS activists at his office near MacArthur Park to prepare for the town hall from 4:30 to 6:30 p.m. Sunday at Hollywood High School. Most were concerned about state budget cuts that slashed L.A. County HIV/AIDS program funding this summer by $11 million -- almost half.
Wilson urged them to ask Obama's AIDS czar, Jeff Crowley, for more research supporting African American and Latino HIV/AIDS programs. Crowley said in an e-mail that the White House plans to prioritize funding for those at greatest risk of becoming infected with HIV, including African American and Latino men who have sex with men.
Alfredo Vargas, 25, was born in South Los Angeles the same year MACS started but never heard of it. He was working part-time for an HIV/AIDS outreach group, counseling peers at local nightclubs about safe sex, until he was laid off last summer because of state funding cuts. He plans to attend the town hall meeting to represent minority youth.
"What is the Obama administration going to do to help us out, to keep ourselves negative or, if we're positive, to take better care of ourselves?" Vargas asked. "They need to learn the importance of why we need the things we do."
Experts meet in SF to formulate federal AIDS policy
Erin Allday, SF Chronicle Staff Writer
Friday, October 16, 2009
Hundreds of AIDS and HIV experts - including doctors, patients and public health advocates - will attend a highly anticipated meeting in San Francisco tonight with White House officials to address the need for a federal strategy to battle the infectious disease.
President Obama has pledged to create the nation's first formal HIV/AIDS strategy, and tonight's meeting is one of at least 13 events planned to gather ideas from AIDS experts.
"We're not making progress in the epidemic because we don't have a coordinated plan, with specific outcomes and goals that have measurements attached to them and accountability attached to them," said Mark Cloutier, executive director of the San Francisco AIDS Foundation.
The meeting, which is being held at UCSF's Mission Bay Conference Center, is open to the public. It starts at 6 p.m.
Shortly after taking office, Obama created an Office of National AIDS Policy to develop a strategy for reducing the rate of infection and providing support to patients living with HIV and AIDS.
Organizers expect the conversation tonight to focus on reducing the number of new infections, improving the long-term health of patients, and reducing treatment disparities.
"They're clearly trying to get the pulse of the constituent groups," said Steve Morin, director of the Center for AIDS Prevention Studies at UCSF. "This calls attention to the domestic epidemic, which has not received the kind of attention it should have over the past eight years."
When: Today, 6-8 p.m.
Where: Robertson Auditorium, Mission Bay Conference Center at UCSF, 1675 Owens St., San Francisco
Who: Open to the public