Founded famously 25 years ago in author and screenwriter Larry Kramer's Manhattan apartment, Gay Men's Health Crisis has always touted itself as first in the fight against AIDS.
In the earliest years especially, that was not a particularly envious position to be in.
Triage probably overstates the condition of the organization's infrastructure at the outset. Run by volunteers for more than a year, with a hotline housed in one of their homes, GMHC found itself fielding desperate calls from sick gay men with nowhere else to turn and battling with hospitals where those overcome by a devastating and terrifying new range of illnesses could often be found languishing in their own excrement.
The group's founders spent hours on the phone with federal health officials scrambling to keep tally of the dead and dying and ran into stone walls trying to get the attention of Ed Koch's City Hall. They initially faced glum prospects in trying to raise money to fight an epidemic pegged immediately as a disease of gay men and injection drug addicts.
A quarter of a century later, even as thousands of organizations worldwide battle AIDS, GMHC, with an annual budget of roughly $25 million, remains a behemoth in the field. Its history, innovations, and market share, of course, give it tremendous influence in the fight against the epidemic, but also impart burdens of their own.
Less than two years after its founding, Kramer, one of a half-dozen key movers in its early days, defected, charging that the group lacked the vision and guts the epidemic demanded. Fifteen years later, GMHC came under fire from other AIDS groups, particularly Housing Works, for what critics said was an overly cozy relationship with the Giuliani administration and its efforts to restructure the delivery of city HIV services.
Most recently, grassroots activists, some with significant records of AIDS advocacy themselves, have faulted the group for an inadequate response to the scourge of crystal meth use among New York's gay men (see accompanying sidebar on Page 5).
As GMHC approaches its 25th anniversary fundraising dinner on March 12, its current leaders – CEO Dr. Marjorie Hill and Robert Bank, the chief operating officer – and Rodger McFarlane, a founding volunteer who became the first paid executive director in 1983, sat down with Gay City News to discuss the group's legacy in fighting AIDS and the challenges faced today. McFarlane, who now heads up the Gill Foundation, a Denver-based gay philanthropic organization launched by software entrepreneur Tim Gill, was in New York on February 15 for a gathering of past and current top leaders of GMHC.
What emerged quickly in the discussion were the disparate experiences that led each of the three AIDS leaders into the battle.
McFarlane was asked about Randy Shilts' characterization of him – in his history of the early AIDS epidemic, “And the Band Played On” – as a young gay man who prior to 1981 did not feel discrimination due to his homosexuality and could not understand the radicalism of political activists around him.
“It wasn't just me,” he said. “There was a whole generation of us who were politicized by AIDS. People laying in the emergency room and dying untreated was the reason.”
The late '70s was a time of youthful exuberance, with Studio 54 in its heyday.
“I kept saying to Larry Kramer early on, 'Some of these people have been working in civil rights for hundreds of years,'” McFarlane recalled. “I mean some of these people had dedicated their whole lives to it… None of us were involved in that. We were at the party.”
Bank perhaps belonged more to the crowd that McFarlane observed from afar.
“I came out of a social justice background,” he said, referring to the burgeoning gay civil rights movement of the 1970s, typified by the late Tom Stoddard, who began his career with the New York Civil Liberties Union, was a pioneering gay rights law professor, and went on to serve for six years leading Lambda Legal, the LGBT public interest legal organization.
Like McFarlane, Hill was introduced to the epidemic by the illness of a friend – but in this case, an African-American woman, Lorraine, from the San Francisco Bay Area, diagnosed with GRID, or Gay-Related Immune Deficiency, as AIDS was first dubbed. Lorraine had trouble locating a doctor who could help her in her own community, and Hill hooked her up with a physician in New York, but she survived less than a year after arriving.
Several years later, working as a psychologist at Kings County Hospital in Crown Heights, Hill again confronted AIDS – also outside the stereotypical gay male context – in the form of family crises emerging in the African-American and Afro-Caribbean communities. She recalled seeing young children with unexplained emotional problems coming from families caring for a member with AIDS.
“Mothers would tell me, 'Johnny, Hakeem, Shakira doesn't know it, but my brother is at home dying of AIDS,'” Hill recounted. “And in another room, Johnny, Shakira would be telling a nurse or social worker, 'My uncle has AIDS. My mother is going to get AIDS. I'm going to get AIDS and we're all going to die.'”
McFarlane was vivid in his recollections of the earliest years of his political awakening, beginning with the flood of calls he received the very first night on the hotline he volunteered to run out of his apartment.
“One-hundred twenty-five scared people. And fucked-up people,” he said. ” I mean they were sitting in shit in Mount Sinai and NYU. We had a patient set on fire. This stuff was surreal. We had people literally beaten up with bats and thrown out of their apartments. You can't make this shit up.”
In the face of this crisis, the Koch administration was – to borrow Kramer's unforgiving language – criminally negligent.
“It was not that they dropped the ball,” McFarlane said. “It was more aggressive than that. It's not that they didn't get it. They didn't want to get it. We were in the middle of an economic recovery of New York. The '70s had been horrible here. And they had just turned that corner… It was all about commerce and tourism and corporate headquarters coming back. They weren't about to say anything like this. It wasn't just like they didn't get it or the research hadn't been done or the epidemiology. They dug their heels in.”
He credited a number of bureaucrats, in city government, in the Cuomo administration in Albany, and at the federal Centers for Disease Control and Prevention (CDC) for doing what they could, but qualified those observations by saying, “Not that we had a god-damned dime or any access to power.”
McFarlane also talked about the highly unorthodox tactics often required. Discussing efforts to create some semblance of surveillance over the spread of the disease as early as 1981, he said, “That was me and Larry on the phone yelling every day at Jim Curran at the CDC, 'You've got to at least make them count the bodies.' We were literally violating confidentiality because CDC would report 30 cases and I'd be like, 'But Jim, I have 50 down this week.' So Jim and I would be on the phone and actually read the names to each other.”
When Kramer broke with GMHC, faulting the organization for failing to make a comprehensive stab at ending the epidemic, he dismissed the group as a bunch of “Florence Nightingales.” McFarlane still bristles at those words, coming as they did from a man who was his lover at the time and has remained a close friend, but he is also able to see the bigger truth they reflected.
“Don't call me Florence Nightingale, bitch,” he remembered thinking, perhaps even saying. “And you call me in the night when you're sick. You know who you're going to call and you call me whenever one of your friends is sick.” Still he acknowledged, “The fact was that we were taking care of dying people and we were not mitigating root causes… We were not civically engaged. We were not advancing research. We were not advancing testing. We were not advancing prevention. We were just basically taking care of sick people, which you must do – it isn't an either or.”
Kramer's dissatisfaction and the anger many other gay men felt over the community's continued helplessness and vulnerability and the government's inaction led in 1987 to the founding of ACT UP. McFarlane is unstinting in his praise of that development.
“The accomplishments of that activism are unequivocal,” he said. “Accelerated approval of investigational new drugs. New applications of old drugs. Statistical alternatives to double blind placebo-control studies. Consumer oversight of FDA approvals. Consumer oversight of NIH research appropriations. State drug assistance programs. Consumer oversight of Medicaid reimbursement formularies. Things that have ramifications far beyond AIDS with implications for hundreds of millions of lives.”
Never before GMHC and ACT UP had sick people organized politically on their own behalf, he said.
Still, much of the criticism that GMHC faced in its first half-dozen years was misplaced, McFarlane insisted.
“People including Mr. Kramer ask why didn't we do this first instead of that,” he said. “There's this notion that there's this strategic planning process, this rational approach… I was living my life organically. My friend is dying in the emergency room. I run over there. Somebody else calls me. Their friend needs a referral… It was quite literally your friends and your lovers laying in shit dying and being kicked out by their families. No one planned, 'Oh, we will go build a social service organization or we will build an advocacy organization.' This was very organic and very real time.”
Bank well knows that.
“I was a volunteer in '85, '86,” he recalled. “What did I know? I wasn't a clinician. I was a young lawyer. I was doing it because you would hear stories about parents coming in and taking everything and locking the door. Often both men were sick, looking out for each other.”
Bank would in time go on to run legal services at the agency, which he managed until his recent appointment as COO. He would also see his lover Eddie, a jazz pianist, become ill with AIDS and four years later die.
Despite what must surely at times have been nearly a flailing fight against a sudden killer, GMHC was not without its resources-and in McFarlane's view the one that distinguished this epidemic from the chronic health crises that face poor people, here and abroad, is that it affected rich gay white men.
“That's why I could pick up the phone and call a congressman,” he said. “That's why I could call the New York Times. That's why I could produce a play at the New York Public Theater [Kramer's “The Normal Heart”]. That's why I could go from $200,000 one year to $5 million the next year to $15 million the next year to $20 million the next year.”
McFarlane, however, remains exasperated that it was not good public policy, but rather the death of a matinee idol that contributed most to advancing the cause.
“Rock Hudson was absolutely crucial in mobilizing show business and as trivial as that sounds it was show business that legitimated this issue for America,” he said, and then, with his voice rising, continued, “Not the public health service. Not the American Medical Association. Not the academy. Not the CDC. It was fucking show business and, early, most specifically Broadway.”
By 1990, GMHC and the AIDS community generally reached a significant milestone, with the passage of the Ryan White AIDS Care Act, which committed the federal government to ongoing prevention, research, and treatment funding. Still, private giving remains critical to organizations such as GMHC-government funding currently accounts for less than 40 percent of the group's annual budget.
It has become almost reflexive for the media to talk about the changed face of AIDS. Indeed the disease is the leading cause of African-American women in New York 25 to 44. And African-American women with HIV here are nine times more likely to die than white women who have the virus.
Yet AIDS is still very much a crisis in the gay community. Bank pointed out that the three largest concentrations of AIDS in the U.S. are found in Manhattan – Chelsea first, and then Harlem – Los Angeles, and central Brooklyn. Among GMHC's clients, 55 percent identify as gay or lesbian, and nearly 80 percent of the total are men. Nearly a third are over 50, almost half live in Manhattan, and the racial breakdown is just about even among blacks, whites, and Latinos.
But perception is always key-and many wonder how long GMHC can depend on the generosity of givers whom gay men for the most part brought to the table two decades ago.
“I like asking for money,” Hill said, recalling what she told the board last fall as they considered her appointment. “I have a great product and a great team and a great reason to ask for money.”
2007: STATE OF THE BATTLE
As they reflected last week on the mission, struggles, and progress at Gay Men's Health Crisis over the past 25 years, Dr. Marjorie Hill and Robert Bank, the organization's top two officials, also fielded questions about pressing issues at the fore in recent years.
Their responses ranged from cautious defense of the agency's achievements to more expansive discussions.
During the past half-dozen years, crystal meth use among New York City gay men – and its relationship to HIV transmission – became a critical community concern. In 2003, two activists, Bruce Kellerhouse and Dan Carlson, launched the HIV Forum, hosting a series of town meetings on the topic. Within six months, Peter Staley, a longtime AIDS activist, began funding anti-meth bus-shelter posters out of his own pocket.
GMHC issued its first major report on crystal in July 2004.
Yet, a year and a half later, Kellerhouse remained unconvinced that the group was doing enough, saying, “GMHC, truthfully, they continue to do what they do best which is to suck up all the community resources. They are lacking in visibility for HIV prevention for gay men.” Early this year, Spencer Cox, who in 2005 founded the Medius Institute to promote policy progress on gay men's health, implicitly took aim at GMHC when he told Gay City News, “A lot of the AIDS organizations, for example, only stop by our neighborhoods when they've got their hands stretched out for a donation. It speaks volumes that the first anti-meth programs in Chelsea were created and funded by concerned individuals.”
Asked about such criticisms, Hill was quick to distinguish the hard-hitting messages that Staley and the HIV Forum produced with the harm reduction approach long championed by GMHC. Harm reduction aims to engage those who practice risky drug or sexual behavior “where they are,” in a manner that its promoters argue is less judgmental, but more effective.
“HIV/ AIDS has taught us that one size does not fit all,” she said. “And there are some people who respond to fear and very intense messages and there are other people who respond better to a harm reduction approach and people who respond to everything in between. The challenge is how to cast a wide net. We need, as a community concerned about public health, to spend more time figuring out how to share our good practices rather than dictating how we should do what we do best.”
Bank said that GMHC's programs on crystal use have “transformed” lives, moving clients “from a place of dependence to a place of self-efficacy.” He also argued, “I think there was a lot of conversation around whether crystal was indeed in communities of color and I think we wasted a lot of time there.”
Hill and Bank were considerably more animated when asked about proposals from Dr. Thomas Frieden, the city's health commissioner, to end the requirement for written consent before an individual is tested for HIV. The commissioner says that the change will remove a key barrier to testing, and reduce the large number of New Yorkers who only learn they have HIV when they become symptomatic.
“We looked at the issue of whether you can scale up testing in New York City and in New York State and throughout the country without taking away written consent and we are completely satisfied that we can do it,” Bank said. “Because we've looked at the data. The data says that [it can be done] if physicians, health care workers routinely offer HIV testing in appropriate medical settings.”
Hill was more emphatic.
“I have never had a medical provider ask me, 'Would you like an HIV test, have you ever had an HIV test?'” she said. “Never in New York City, with medical insurance. With black doctors, white doctors, gay, straight. It doesn't matter. So there's something wrong. And if you tell me that they didn't ask me because they had to get a consent form, that's bullshit because, excuse me, with all the HIPAA forms, I have to sign away my next 10 children.”
Hill recounted a talk she gave about HIV testing at Mount Sinai Medical School, where students and faculty said they were not talking enough about sex in their education and wanted to visit GMHC to explore how to better engage the issue. She then took a shot at the critical failures of public health in New York.
“Now I think that Tom Frieden or the New York State health department or the Health and Hospitals Corporation are in a much better place to provide information to medical schools,” she said. “But we're willing to do it, because we think it's important.”
Hill noted that similar shortcomings plague the effort to bring sex education into the schools. GMHC sponsors a Little Sisters program where staffers work with schoolgirls on issues of sex and HIV prevention.
“But the way we get in, we have to have an in, so if the guidance counselor at the school is progressive and has a connection, we go there for six weeks and teach this as a group,” she said, adding, “We don't get a dime, not from the CDC – it's a CDC-approved program. We don't get a dime from the Department of Education, though they're glad to have us do it. We don't get a dime from the city. We do it because we think it's important.”
Bank was more direct about the intransigence of city education officials over AIDS.
“We haven't beaten the school thing yet,” he said. “There's no question about it.”
On hot button prevention issues, such as the down-low phenomenon and barebacking, Hill and Bank are adamant: both discussions are distractions and they are stigmatizing.
“I am appreciative that there is interest in the most important public health issue of our time,” Hill said of the media's fascination with men of color who have sex with men while living publicly heterosexual lives. “I am furious that it is only talked about in the context of demeaning and degrading black men. I mean what is that about? What is that about?”
For her, the bottom line, missed in the hype, is fundamental: “Everyone who is sexually active should be skilled in discussions around their own status and inquiry about their partner's status.”
Bank insisted that misplaced media attention does not get in the agency's way.
“We're doing fantastic work with these men,” he said.
On barebacking, Bank said that the alarming headlines and cable TV exposés are an unfortunate byproduct of “this country being unable to talk about sex.”
Asked if gay men themselves had not been part of the branding of the barebacking concept, Hill responded, “Well, there are lots of things that stigmatized communities brand. I don't necessarily subscribe to all of them.”