By the time the first national AIDS education campaign was launched in 1988, when 107 million brochures entitled "Understanding AIDS" were mailed to every U.S. household, there were 83,000 U.S. AIDS cases, and more than 45,000 people had died.
Twenty-four years later on May 9 in New York City, 500 people, mostly Caucasian men, gathered to discuss both long-term survival and alarming data by University of Pittsburgh researcher Ronald Stall suggesting that if current trends continue 50% of African-American men who turned 18 in 2009 and have sex with men will be HIV+ by age 35. Fifty-four percent of all men who have sex with men will be HIV-positive.
Before the panel discussion began for Is This My Beautiful Life? Perspectives from Survivors of the AIDS Generation, Windy City Times talked to individuals filtering into the auditorium of Baruch College's Mason Hall, in Chelsea.
Many in the room lamented the fact that AIDS service organizations have all but abandoned regular support programs for long-term survivors. So have national gay organizations, like HRC and the nation's network of "equality" organizations panelists said.
Worse yet, gay/bi men are only about 2-6% of the U.S. population (depending on who you ask), but are the fastest growing group of new infections, 63% of total infections in recent years. There has been a 12% rise in HIV transmission for men who have sex with men between 2008 and 2010, the year for the latest estimates. The rise occurred even as rates dropped in all other populations.
Originally from Chicago, Yvonne Ghareeb, a 23-year staff veteran of Broadway Cares/Equity Fights AIDS, one of the evening's sponsors, said in a voice tinged with concern that she's saddened so many survivors are forgotten. "And suicides are up with long-term survivors," said the former Off-Broadway theater coach.
In fact, it was the Dec. 18, 2012 death of Spencer Cox, 44, early ACT UP participant, who apparently had stopped taking his HIV medicines, that moved his friends to act. Cox was featured in the Oscar- nominated documentary How to Survive a Plague. His unexpected death pushed friends to revamp The Medius Institute for Gay Men's Health, originally active in 2006-2007, and now reconstituted as the Medius Working Group, and a program sponsor. His medical proxy, Carly Sommerstein, said, "Early in the epidemic activists were in media's face. That needs to happen again. Survivor support is down. Infections are up."
The Medius Institute for Gay Men's Health advocated for research into the emotional, mental, and physical stresses facing gay men in midlife. Two papers by Cox, one on gay men in midlife and the impact of AIDS, and another on the role depression plays in risk-taking behaviors are online under Writings by Spencer Cox at www.treatmentactiongroup.org .
In media interviews after his untimely death and on the night the NYC meeting, Cox's friends wondered aloud if their buddy lost his way. A New York Times blog at the time of his passing asked if Cox had succumbed to "pill fatigue," since doctors indicated he apparently had stopped taking HIV medications.
"I've been lost since surviving," said Pennsylvania native Sean McKenna, now an NYC resident. At one point, McKenna authored Love Danny, Advice from a Positive Perspective, which ran in WCT and other publications. McKenna said in a concerned voice, "I'm always waiting for the other shoe to drop, especially with my health." He feels too old to begin a new career and too young not to have one.
HIV stigma has stymied McKenna too: "I feel treated like the 'bad gay' who got infected, not the 'good gay' who didn't." He readily cites reported low levels of safer sex being practiced by g/bi men and asks "How do we close the gap, where's the disconnect?" One disconnect McKenna talked about with resentment is how Gay, Inc., devoted exclusively to equality issues, has abandoned gay men, a theme panelists also explored.
The formal panel opened with a segment from How to Survive a Plague. A local screening of the film is set for Center on Halsted June 6, 5 p.m. when Chicago Department of Public Health, the Illinois Department of Public Health and ViiV Healthcare hosts an HIV testing seminar. The film covers the dark days of 1987, when the country was six years into the AIDS epidemic, a crisis that was still largely being ignored both by government officials and health organizations—until the sudden emergence of the activist group ACT UP in Greenwich Village, largely made up of HIV-positive participants who refused to die without a fight.
The June 6 event offers free, rapid HIV testing available all day in observance of National HIV Testing Day at Center on Halsted, 3656 N. Halsted St., Chicago. The program begins at 5 p.m. with keynote speaker Dr. Robert Dodge, University of North Carolina School of Medicine. Free dinner will follow followed by the film at 7 p.m. in the Center's Hoover-Leppen Theatre. For information and registration, contact HIVrsvp@centeronhalsted.org; 773-472-6469 ext. 403.
Panel moderator Perry Halkitis set the NYC evening's tone by commenting that if World War II's generation was the "greatest" the AIDS generation was the "bravest".
Peter Staley delivered the evening's most dramatic indictment, echoing what audience member McKenna said privately. "I feel abandoned by Gay, Inc., by the same organizations who built their national platform on what was originally put into place by AIDS organizations, something they now forget," Staley argued. He wondered how much lower HIV infections might be, instead of rising so rapidly in recent years among gay men, "if HRC devoted 5 or 10% of their budget to prevention and education."
Staley also touched on the big AIDS elephant in the room—current HIV drugs are easier to take and produce fewer side effects making HIV treatment a vastly different experience for younger men. "The death and dying, the constant diarrhea, body changing lipodystrophy (loss of facial and limb fat, distended belly), they ain't seen it," Staley said. "We need to meet young men where they are. Listen to them and their concerns."
Connecting his thoughts to both Staley and audience member McKenna,
Joe "JoeMyGod" Jervis noted how guys in their online bios refer to themselves as "clean" which means "I'm not infected. If you are you're dirty."
ACT UP veteran Jim Eigo, who has returned to weekly meetings, said his experience with younger men has been positive, especially when they discuss Plague and United in Anger, another history of AIDS film. Eigo said, "It really registers when I explain how we used to say to each other 'Will the last man in Chelsea turn out the lights.'"
Jesus Aguais, who was 20 years old in 1988 when he learned he was infected shared that empowerment comes "when your political mind wakes up. You're not supposed to witness all that death so young," telling the audience how he transported the ashes of four friends back to Venezuela. He underscored what Staley noted: That's not the experience of younger infected men today. HIV is no longer a death sentence. It's successfully treatable, although as was murmured from the audience "That doesn't mean you want it."
Collectively, panelists weaved data, and the lack of it, around the themes of unresolved grief and guilt for survivors; the lack of data on HIV-related suicide, and "syndemics," a clustering of pressures faced by individuals—old age, HIV, isolation, depression. "Much of what we need to know just isn't collected or studied," said Mark Brennan-Ing.
L. Jeannine Bookhardt-Murray, M.D, brought a moment of laughter to a sometimes-somber evening. "I expected to witness two events in my life, the election of an African-American president and a cure for AIDS. We got one. Now it's time for the other!"
Program sponsors were ACRIA; The Actors Fund; Aid for AIDS International; Broadway Cares/Equity Fights AIDS; Callen-Lorde Community Health Center; Center for Comprehensive Care; Center for Health, Identity, Behavior and Prevention Studies at NYU; Friends in Deed; Gay Men of African Descent; GMHC, Harlem United; the Lesbian, Gay, Bisexual & Transgender Community Center; SAGE; Sero Project; and Treatment Action Group.
Panel photo: Panelists, left to right: Jesus Aguais, Mark Brennan-Ing, Ph. D.; L. Jeannine Bookhardt-Murray, M.D; Jim Eigo, and Joe " JoeMyGod" Jervis, Peter Staley. Perry Halkitis, Ph.D., moderator.
