GMHC was first, and that challenge was daunting

Volume One, Issue 24, March 2 - March 8, 2007

File photo by Donna Aceto
Rodger McFarlane, GMHC’s first executive director, with its current leaders, Dr. Marjorie Hill and Robert Bank

BY PAUL SCHINDLER

Founded famously 25 years ago in screenwriter and novelist Larry Kramer’s Manhattan apartment, Gay Men’s Health Crisis has always touted itself as first in the fight against AIDS. Initially, that was not an envious position to be in.

Triage overstates the organization’s infrastructure at the outset. Run for more than a year by volunteers, GMHC fielded desperate calls from sick gay men with nowhere else to turn and battled hospitals where those overcome by devastating illnesses could 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 in Ed Koch’s City Hall. Fundraising was difficult in fighting an epidemic pegged immediately as a disease of gay men and injection drug addicts. Even with thousands of organizations worldwide today battling AIDS, GMHC, with an annual budget of roughly $25 million, remains a behemoth. Its history, innovations, and market share give it tremendous influence, but also impart burdens.

Kramer, one of a half-dozen key movers early on, quickly defected, charging the group lacked vision and guts. Fifteen years later, GMHC came under fire for what critics charged was a cozy relationship with Giuliani administration efforts to restructure HIV service delivery. Recently, some grassroots activists with significant AIDS advocacy credentials have faulted the group for an inadequate response to the scourge of crystal meth use among New York’s gay men.

As GMHC approaches its 25th anniversary fundraising dinner on March 12, its current leaders — CEO Dr. Marjorie Hill and chief operation officer Robert Bank — and Rodger McFarlane, a founding volunteer and the first paid executive director who now heads the philanthropic Gill Foundation, sat down to discuss the group’s legacy and current challenges. The three described disparate experiences that led them into battle.

McFarlane explained that pre-AIDS he lived largely removed from the nascent gay rights movement. “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. “None of us were involved in that. We were at the party.”

Bank was part of the crowd that McFarlane observed from afar. “I came out of a social justice background,” he said, pointing to earlier activists who cut their teeth pioneering gay organizations in Stonewall’s wake.

Like McFarlane, Hill discovered the epidemic through the illness of a friend — an African-American woman, Lorraine, diagnosed with GRID, or Gay-Related Immune Deficiency, as AIDS was first dubbed. Lorraine had trouble locating a doctor, and Hill hooked her up with care. She survived less than a year.

Working as a psychologist at Kings County Hospital in Brooklyn several years later, Hill next confronted AIDS — also outside the stereotypical gay male context — in African-American and Afro-Caribbean families caring for a loved one with AIDS but who came in with children experiencing unexplained emotional problems. “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’s recollections of his political awakening are vivid, beginning with the flood of calls he received the first night on the hotline he volunteered to run out of his apartment. “One-hundred twenty-five scared people,” he said. “ I mean they were sitting in s--t 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.”

Facing 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.” He credited a number of bureaucrats, in city government, in the Cuomo administration in Albany, and at the federal 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.”

When Kramer broke with GMHC, faulting it for failing to make a comprehensive stab at the epidemic, he dismissed the group as a bunch of “Florence Nightingales.” McFarlane still bristles at those words, but he is able to see the bigger truth they reflected. “The fact was that we were taking care of dying people and we were not mitigating root causes,” he said. “We were not civically engaged. We were not advancing research. We were not advancing testing. We were not advancing prevention.”

Kramer’s dissatisfaction and the anger many other gay men felt over government inaction and their continued vulnerability led to ACT UP’s founding in 1987. McFarlane is unstinting in his praise of the group. “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… Things that have ramifications far beyond AIDS.” Never before GMHC and ACT UP had sick people organized politically on their own behalf, he said.

Still, much of the criticism of GMHC 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… I was living my life organically. My friend is dying in the emergency room. I run over there. Somebody else calls me... No one planned, ‘Oh, we will go build a social service organization or we will build an advocacy organization.’”

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.” Banks saw his lover Eddie, a jazz pianist, become ill with AIDS and four years later die.

Despite a nearly flailing fight against a sudden killer, GMHC was not without its resources—and in McFarlane’s view what distinguished this epidemic from the chronic health crises that face poor people was 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.”

But McFarlane remains exasperated that it was not good public policy, but a celebrity’s death that contributed most to advancing the cause. “Rock Hudson was absolutely crucial in mobilizing show business,” he said, and then, his voice rising, continued, “Not the public health service. Not the American Medical Association. Not the academy. Not the CDC. It was f--king 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, committing the federal government to ongoing prevention, research, and treatment funding.

But private giving remains critical to organizations such as GMHC—government funds account for less than 40 percent of its budget.

It has become almost reflexive 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. 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. Almost half live in Manhattan, and the racial breakdown is just about even among blacks, whites, and Latinos.

But with perception key, 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.”