Annals of Activism
How to Survive a Footnote
AIDS activism in the "after" years
I see the police cars first. There are two of them parked on Park Avenue a block south of the Waldorf Astoria, and I appreciate that they’re there, because they show me where to go. I hadn’t been sure exactly where the protest was going to happen; the police always know. I can’t see any protesters from the corner where I am standing, so I close my eyes and listen. The soundscape of Manhattan is so mottled that you can always hear what you hope to, at least at first: a song, your father’s voice, someone calling your name. I think I hear organized, angry shouts, the beat of a drum. But those are ghost sounds, swallowed up by random clamor when I open my eyes.
I don’t want to be alone with the police, so I cross the street and walk once around the hotel, which takes up an entire city block. Gold accents the facade; warm lights and polished floors shine beyond the spinning doors. I walk west up 50th Street and turn the corner. There, nearly outnumbered by the cops, are the people I have been looking for. Not so many, but enough to constitute a crowd with a periphery, which is where I position myself — halfway between the angry and the enforcers — as I have done throughout the two decades I’ve spent working on and writing about AIDS.
It’s January 2015 and it’s so fucking cold that it isn’t possible to say whether the small turnout is a sign of the dwindling AIDS-activist movement or of people’s desire to avoid frostbite. The occasion is the Human Rights Campaign’s annual Greater New York Gala.
It’s a good time to be HRC, self-described as “America’s largest civil rights organization working to achieve LGBT equality.” State by state, barriers to LGBT marriage have fallen like dominoes, and the Supreme Court decision on the legal nature of the lifelong partnership between Thea Spyer and Edith Windsor is a sign of the seismic change on the horizon — by June, with the frigid air a distant memory, SCOTUS will have removed the last shreds of ambiguity, declaring that the right to marry belongs to all American citizens.
But with $38.5 million to its name, HRC isn’t stopping anytime soon. Alongside marriage equality, it has focused on issues of discrimination in the workplace. Tonight’s gala is “presented by” GE, and, with tidy reciprocity, HRC will be presenting the company with a Corporate Equality award. Along with Boeing, Anheuser-Busch, and eBay, GE scores high on HRC’s Corporate Equality Index. The index is part and parcel of its Americans for Workplace Opportunity campaign, which has, in the summer months, legions of clipboard-wielding volunteers setting dragnets in major American cities, querying: Doyouhaveaminuteforgayrights? Doyouknowyoucanstillbefiredforbeinggayinmanystates?
The IRS 990 form, with its space constraints and mandatory all-caps font, forces nonprofits to cram their achievements into telegraphic communications. In its most recent tax filing, HRC highlights this workplace campaign and credits itself with passing the Employee Non-Discrimination Act in the US Senate. It mentions, too, work at the state level to prevent discrimination against LGBT youth. Tacked on to the end of this sentence is the phrase “maintain and/or increase HIV/AIDS” — the sentence cuts off after that. HRC means to say something about what it does to fight HIV among LGBT people in America, but the point the protesters want to make tonight is that this truncated sentence, with its unintentional suggestion that HRC is contributing to the epidemic, is, as written, exactly right.
With their battery-powered bullhorn, card tables, and press kits in unmarked manila envelopes (I am the only press present, and with my long ties to AIDS work I am hardly neutral), the protesters are here to argue that HRC pays far too little attention to HIV. Rates of infection among young gay American men of color approach or outstrip comparable rates in sub-Saharan Africa, and an oft-cited, highly credible epidemiological projection forecasts that if things stay as they are, 50 percent of all young gay men in the US today will acquire HIV by the time they’re 50 years old. The protesters point out that there are just thirty-three pages devoted to HIV/AIDS on HRC’s website, which has, by comparison, 400-odd entries on marriage. They demand that the organization appoint a full-time, permanent staffer to work on AIDS issues instead of the one-year “HIV/AIDS Project Fellow” who is currently the only person working at HRC with a title that relates to HIV at all.
But they also point out something that’s more essential — so essential, in fact, that it’s astonishing to hear it said at all. “People with HIV are part of the LGBT community,” says Andy Velez, a Jewish–Puerto Rican former psychoanalyst and ACT UP veteran, who’s wearing an Elmer Fudd hat against the cold. “We are part of it, too.”
The fight against AIDS and the fight for LGBT rights haven’t been the same fight for a long time.Tweet
That anyone would need to make this argument — people living with HIV are part of the LGBT community — might seem strange. The marriage-equality revolution has coincided with a flourishing of movies, television shows, gallery exhibitions, and conferences devoted to the early history of AIDS and its activism. These chronicles — Dallas Buyers Club, Angels in America, The Normal Heart, How to Survive a Plague, We Were Here, and several other more or less mainstream films and plays — all tell a story about AIDS in America that places gay men, transgender women, and a smattering of lesbians at the heart of the battle against a modern plague. In this story, people with HIV are not part of the LGBT community, they are the LGBT community.
There is plenty of truth in this account. It’s true that gays and lesbians fought against death with a handful of allies while Ronald Reagan failed, for the first six years of the epidemic, to utter the word AIDS in public. It is also true that the more recent past has brought a level of acceptance of same-sex couples that would have been unthinkable even twenty years ago. But these eras are not sequential chapters of the same story, and treating them as such obscures the fact that the fight against AIDS and the fight for LGBT rights haven’t been the same fight for a long time. This rainbow-hued act of elision ensures that the tourists encountering the protesters circling under the Waldorf’s gold-and-milk-glass awning tonight cannot understand what is going on.
The sun has dropped and it is, incredibly, even colder than it was before. But the tourists stop and lift up their iPhones and ask me to repeat myself. This is ACT UP, the best-known AIDS-activist group in America, I say, and that is HRC, the largest gay rights group in America, and this protest is because the first group feels that the second one has failed it entirely.
The first report of the virus that came to be known as HIV was published on June 5, 1981, in a Centers for Disease Control and Prevention circular that documented five cases of a rare pneumonia in “previously healthy gay men.” The Reagan Administration was slow to react to a disease that was initially believed to afflict only men whose lifestyles classified them as deviant, perhaps even deserving. As the CDC dutifully reported mounting numbers of AIDS cases — roughly one thousand in early 1983, more than four thousand just one year later — Reagan said nothing. By the time he gave his first public address on HIV, in 1987, tens of thousands of Americans had already died from AIDS.
In the face of this neglect, heavily impacted communities formed their own groups for support, advocacy, and activism. One of these was ACT UP, the radical activist organization whose weekly meetings in New York, Boston, San Francisco, and many other major American cities became centers for sharing scientific information, formulating demands, and planning “actions.” Actions ranged from blocking the major bridges and tunnels of New York City, to carrying the body of a fallen comrade through the streets for a “political funeral,” to shutting down Wall Street. These actions, along with attention-grabbing graphics, helped to define the group as one of the most visible faces of the AIDS response. The protests often targeted the drug-development process, demanding that possible remedies move into human clinical trials more quickly and that the US Food and Drug Administration speed up its review and approval process for promising compounds.
Eventually, in 1995, a life-saving biomedical breakthrough arrived with the development of protease inhibitors, the class of HIV drugs that eventually became the cornerstone of the first successful AIDS treatment. When protease inhibitors arrived, one era of the AIDS crisis was over.
Many stories of the plague years in America end with this victory. Sometimes a coda is appended to acknowledge that the crisis itself isn’t over, referencing ongoing epidemics in Africa and, less often, in black and brown populations in America. What’s often missing from these analyses is an era that I’ve come to think of as the “footnote years” of AIDS activism: a sliver of about five years, from 1996 to 2001, in which a specific urban, queer-identified American activism played a role in changing the global response to HIV, and sought, less successfully, to use this work as a jumping-off point for a broader quest for justice.
Anne-christine wore leather pants, smelled of musk oil, and seemed guided, in turns, by scientific acumen and star-based intuition.Tweet
What happened in those years can’t be contained in a coda. Nor can it be credited with all the victories that came later — but it was an era in which AIDS activism began winning remarkable victories in the global arena, and the era in which the AIDS and LGBT agendas cleaved apart. As such, it helps explain the impasse at which AIDS and LGBT activists now find themselves.
I got my first job in HIV/AIDS in February 1996. After graduating from college in 1995, I had returned home to New York City armed with a biology degree, a plan to be a writer, and a predilection for butch women in low-riding jeans. I found work at Out and used my biology vocabulary to endear myself to Anne-christine d’Adesky, the Pulitzer-nominated journalist-activist who covered HIV for the magazine.
Anne-christine wore leather pants, smelled of musk oil, and seemed guided, in turns, by scientific acumen and star-based intuition. She asked questions about T-cells that could make career immunologists question their assumptions, and she hired our managing editor, a downtown performance artist, because she was a Virgo. I didn’t know anything about HIV, but I’d pointed out to Anne-christine that an enzyme and a protein were the same thing during one of our fact-checking sessions, and somehow that had been enough. I knew even less about the arc of the HIV/AIDS movement, and how significant the recent development in treatment really was: the first protease inhibitor had been approved by the FDA just two months before I met Anne-christine.
Used in combination with existing HIV drugs like AZT, protease inhibitors stopped HIV from copying itself and wreaking havoc on the body. Nautical blue and white, pumpkin yellow and imbued with a glycerin shine, the pills looked like riches. As soon as people started taking effective combination HIV treatment, their health returned. It was astonishing. The world I found myself in was undeniably after — after the dying, after the government neglect, after the quack remedies and homeopathic pipe dreams, and after the unadulterated grief and anger of people caught in a plague that was hidden in plain sight.
With all this, one might imagine that in 1996 some celebration or commemoration would have been in order, something that would have made the contours of this era apparent to me. But there was nothing of the sort. Fact-checking articles for Anne-christine, I dialed phone numbers off a list she’d printed up. Some of the names belonged to scientists, many more to those who had survived. Call Spencer, she’d tell me. Call Michael, call Richard, call Gregg. The people who answered the phone always sounded busy, and sometimes sounded angry. They didn’t sound happy. Often, they grew chatty when I posed my questions about the drugs’ side effects — nightmares, hallucinations, explosive diarrhea, kidney stones, and more. But sometimes they didn’t warm up to me at all.
“You’re just calling to cherry-pick for free,” one activist barked when I called to interview him for an article on anal cancer. The whole idea that anyone who hadn’t buried countless friends or patients or both was earning a living off the virus was, at that point, scandalous. This activist who had HIV, who worried constantly about anal warts and pap smears, was supposed to give me his information so that I could get paid? He knew that that money wasn’t going toward buying meds or paying off credit-card bills I’d racked up when I thought I was going to die. It was going toward the next pair of red Doc Martens, a bottle of Jolene bleach to burn my hair blonde, a table filled with vodka gimlets. It was money that was being made off AIDS, paying for an AIDS-free life.
Most of the men I called were living with HIV and had abandoned their careers or, given how young they were, not started them at all. They were not doctors or public health professionals, and everything they had learned, everything they were beginning to teach me, they had learned for their own survival. I wanted so badly to earn their respect that I tried to keep my ignorance a secret. I didn’t ask them why they weren’t happier, or at least a little relieved, given the miracles that combination treatment achieved.
It would take me years to begin to ask this question and to realize that failing to ask — given my age and provenance — betrayed my ignorance more clearly than any query could have. Years later, when I did ask men who’d survived whether those years had been ones of gladness, they said no, not at all. Untreated HIV in America had killed tens of thousands of men, women, and children. The drugs had ended this killing, but they had arrived late. For much of the 1980s, the government’s homophobia had manifested itself in budgetary stinginess and public-health heel dragging. Some portion of the dead need not have perished at all.
Few soldiers return home from war feeling triumphant. They miss their fallen comrades, and civilian life is unfamiliar, perhaps even banal. To continue on is to betray the dead and to have to come to terms with the past. “First, the things I resist remembering,” wrote the gay, conservative writer and editor Andrew Sullivan in the opening sentence of his 1996 New York Times Magazine article “When Plagues End.” “The things that make the good news almost as unbearable as the bad.”
It should be the task of the society to which warriors return to commemorate their valor. But, in 1996, the majority of Americans were barely aware that a plague had taken place, so there was little reckoning with what had just happened. There was no permanent memorial: as the lesbian activist, writer, and ACT UP veteran Sarah Schulman wrote in her book The Gentrification of the Mind, “The names of our friends who Ronald Reagan murdered are not engraved in a tower of black marble. There has never been a government inquiry into the fifteen years of official neglect that permitted AIDS to become a worldwide disaster.”
It was clear that issues of race, class, gender, and globalization all had to be tackled.Tweet
As commentators on the post-1996 era of gay life, Schulman and Sullivan stand at opposite ends of a political spectrum. Schulman identifies Sullivan as a poster boy for the “gentrification” of gay and lesbian politics after 1996, with its drive toward “assimilationist” goals like marriage rights and the right to serve in the military. Sullivan, on the other hand, used his 1996 essay and subsequent writings to critique post-AIDS circuit parties and sexual activity as a traumatized, escapist response to the crisis. What Schulman and Sullivan share is a tendency to view the post-1996 years through the lens of what had come before — the ways that the plague did or did not get remembered or processed, and at what cost.
Such a focus on memory can obscure the present, and Schulman and Sullivan both gloss over the work of activists who, post-1996, thought it was neither time to stop and memorialize nor time to forget and move on. After 1996, most people living with HIV still didn’t have access to the new, powerful medications, whose costs topped out at nearly $40,000 a year. This reality was one of the catalysts for a new wave of radical, multi-issue activism that built on the model used by ACT UP New York.
To this group of activists, it was clear that issues of race, class, gender, and globalization all had to be tackled if the partial victory of antiretroviral therapy was going to spell a true end to the epidemic. These issues had come up within ACT UP — most chapters having been dominated by white gay men — and in the reshuffling after 1996, they came to the fore. The activists who articulated and tackled these issues could be found in some of the treatment-oriented activist groups — San Francisco’s Project Inform, New York’s Treatment Action Group and AIDS Treatment Data Network — and also in groups focused on race and class, like Housing Works, ACT UP Philly, and others. This was the kind of activist community, made up of a mixture of younger dykes and veteran activists, that I found myself in when I returned to New York.
In 1998, Anne-christine launched HIV Plus, Out’s new quarterly magazine focused on HIV, and she took me along. At first, the only computer in the office that dialed up to the internet was in the advertising department; it ran Netscape and froze all the time. I made calls on a princess phone with a sticky coiled cord. All the staffers at the magazine were friends, and so Anne-christine flung me invitations to parties, ’zine launches, happenings. But I had returned to New York City with a severe anxiety that had me walking Broadway from 59th Street down to the tip of Manhattan on many nights, so, while I wanted nothing more than to accept the invitations, I always turned them down.
Activist meetings were another matter. I knew how to work better than I knew how to play, and, in the final years of the 20th century, there was plenty of work to be done. New York’s mayor, Rudy Giuliani, was waging a holy war in the name of quality of life on squeegee men, peep shows, and public sex in all its manifestations, from movie-house gropings to sex clubs to the decimated but still extant demimonde of gay sex on the abandoned Chelsea piers. A group called Sex Panic had emerged as a counterweight to conservative voices within the gay community, who were arguing that the sex-positive culture of the pre-AIDS years had to be abandoned so that gays could “grow up” and gain the kind of mainstream acceptance the nascent campaigns for marriage equality and open service in the military were aiming for. Sex Panic collaborated with ACT UP New York on protests and argued that Giuliani’s attempts to shut down sex shops and triple-X movie theaters would actually hamper public health, since accessible, unpersecuted venues for sexual pleasure were the best defense against paranoia and misinformation.
What is it you do? I asked her. Information architecture, she said, making small squares in the air with her hands.Tweet
That October, a young gay man named Matthew Shepard was battered and tied to a wooden fence on a frigid Wyoming roadside. Four months later, a Guinean immigrant, Amadou Diallo, reached for his wallet and fell in a hail of forty-one police bullets on a doorstep in the Bronx. As many HIV journalists brushed up on biblical references — Lazarus, raised from the dead, appeared over and over in those early treatment days — others began to turn to economics and patent laws as the focus of their reporting. The new, life-saving protease inhibitors, like other antiretroviral drugs and also the drugs used to treat common coinfections like cryptococcal meningitis, were patented by profit-seeking pharmaceutical companies, putting them far out of reach for people in many parts of the world. Clinicians in South Africa and elsewhere had no choice but to tell patients who reported the headaches signaling crypto that it was time for them to go back to their villages and die.
Shepard, Diallo, the protection of public sex, and the price of antiretrovirals all came up at the meetings I started to attend. Many were held in the apartment of Sharonann Lynch, a southern-born New York transplant. The apartment was on 5th Street between Avenues A and B. There were juice glasses in the cabinets, whiskey on top of the refrigerator, ice cubes fished from the freezer’s hoary depths. Cat Power on the stereo, a menu for Benny’s Burritos on the floor. Five flights up, no elevator. Everyone still had day jobs; few people worked in AIDS. Sharonann worked at a corporation, which was a good thing because of the copy rooms, the reams of paper for making flyers, the all-night access. What is it you do? I asked her. Information architecture, she said, making small squares in the air with her hands. I had never heard of such a thing.
I met Sharonann for the first time at a meeting to plan Matthew Shepard’s political funeral. On October 19, 1998, a group gathered in and around the square park outside the Plaza Hotel. One thousand people had been anticipated. When many times that number showed up, it became clear that marching down the sidewalk would not suffice. There was no permit for marching in the street, but the size of the crowd decided the matter. The first wave of people filed out into the traffic lanes, sat down, was arrested, and filled all the paddy wagons the police had brought. The next waves of marchers stayed on their feet, flowed out across the asphalt, and began marching down the long throat of Fifth Avenue.
Marshals, designated to guide the crowd, wore pink ribbons on their arms. The police tracked these ribbons, moving up from the back of the crowd and arresting the leaders. I had a band around my arm even though I knew nothing of marshaling and was both terrified and electrified by the pleasure of using the street for something for which it was not intended. I stayed close to a more experienced friend, and, with two other women, we ran down the sides of the crowds, coming to intersections and then locking elbows, directing people this way and that. Turn, we shouted. Turn, turn, turn. We ran even when the cars started moving again, threading through traffic. We stopped only when the police hemmed us in on a side street, and then we linked arms and sat down as they started riding their horses into the crowd.
Sarah Schulman was also at the march for Matthew Shepard. “It was a transitional crowd,” she wrote in The Gentrification of the Mind. “There were guys in suits, a lot of younger people who’d never been in a real demonstration, and a lot of friends from the old ACT UP days.” Yes, I thought when I read this line. The crowd had been extraordinarily mixed. There’d been men and women whose bodies bore the signs of those first regimens of pills, their side effects nearly as gruesome as the symptoms of the disease — wax-melted faces and spindle-stick arms, pot bellies on the women and hollow cheekbones on the men — and then there had been my childhood best friend, the one who wouldn’t come to dyke bars with me because they made her uncomfortable but who was nevertheless in the crowd that night. But in Schulman’s book, the younger people have been forgotten by the end of the paragraph. “We’d seen it all,” she says of the crowd. “It was an action of the emotionally experienced.”
It was and wasn’t. It’s true that the older activists had laid the foundation for actions like this one, but it’s also true that, for me and for many other people, this was the first time we’d disobeyed the law en masse and felt that defiance soothe our grief and anger. Schulman, somewhere in the crowd, felt that there was nothing new under the sun. And yet that was, in many ways, the night my life began.
The October 19th Coalition, as the group that planned the Shepard march had come to be known, transformed in short order into Fed Up Queers, a scrappy activist troupe whose members were among the first to be arrested protesting Diallo’s killing and could be found breaking up Log Cabin Republican fund-raisers one night and taking on Rudy Giuliani the next. In 1999, members of FUQ, an acronym that delighted everyone involved, joined forces with the Columbia University professor Alan Berkman and many other groups to launch an organization called Health GAP. Health GAP would become the most successful American AIDS-activist organization of the after era.
The work of the increasingly globalized AIDS-activist movement was to get drugs to everyone who still needed them. One thing that separated the early HIV epidemic from, say, Ebola, is that HIV ravaged Western and African countries alike. So when the new medications brought health to people living with HIV in wealthy countries but not to those in poorer ones, the sense of inequity was guillotine sharp. Groups like Health GAP worked with growing activist movements in places like Brazil, Thailand, and South Africa to pressure the American government and drug companies to stop blocking access to AIDS drugs.
One Saturday afternoon in June 1999, I went to a meeting in an apartment on East 11th Street that was filled with familiar faces from FUQ and Health GAP and the other shifting and overlapping activist groups of this period. The apartment had the parquet floors of an older person’s home — by which I mean a grown-up’s. I was 26, and still what the veteran AIDS activists who had stayed on referred to, not quite kindly, as a “peach” or a “baby dyke,” even though on National Coming Out Day I had wheeled my office chair over to my boss to confess to her that I sometimes dated men. There were comfortable chairs at the meeting, but I sat on the floor. As usual, I didn’t know where the bathroom was and wondered why there weren’t any snacks. Unlike the meetings on 5th Street, though, this one was happening during the day. There were people I didn’t know, people with kind smiles, rail-thin frames, and urban-professional garb that looked slightly more polished than the protest T-shirts and jeans of my Alphabet City nights.
Later I’d come to recognize these as distinctive traits of activists working on international health and human rights, a group whose familiarity with global politics and relationships with activists in other countries would prove key in the coalition-building era that lay ahead. That day, all I registered were small changes — new people, daylight — and those two things were enough to suggest that the scope of our work was growing. Al Gore had declared his candidacy for the presidency of the United States, granting us an opportunity to protest his stance on HIV treatment: he’d been the Clinton Administration’s front man in supporting the big drug companies in a lawsuit against South Africa, which had written the right to produce generic drugs into its constitution. This threatened business interests, and Gore had been trying to get the South Africans to back down.
LGBT advocacy groups felt as if they could pivot away from issues connected to HIV in good conscience.Tweet
Sharonann Lynch was there, with a yellow steno notebook in her hands. People were planning to drive overnight to Gore’s campaign kickoff in Carthage, Tennessee. It was springtime, and the wind was green and sounded like ripping paper. The group suggested chants. “AIDS drugs for Africa,” I said, and Sharonann wrote it down. She put a gold star next to it, and afterward, on the sidewalk, I squinted at the sun and discovered my eyes were wet, and I was smiling.
They drove overnight to get there. I didn’t go along, but there it was in the New York Times the day after: AIDS drugs for Africa. The story ran along the bottom of a page. It felt like cheating in a way — to come up with a story and then make someone else write it down — but also like winning, in the best possible way.
Throughout this period, the nation’s major gay rights groups had begun throwing their money, political weight, and organizing machinery behind marriage equality and the rights of LGBT servicemen and women. This shift wasn’t an expansion of an HIV-focused agenda but rather a true shift away from HIV. The HIV-related issues that persisted in the US derived largely from the racial and economic disparities between who got treatment and who didn’t and therefore weren’t personal to the affluent, white demographic behind most of the major LGBT organizations. Besides, antiretrovirals had turned HIV into a chronic but treatable condition. With AIDS increasingly in the hands of public health professionals whose efforts and expertise were directed toward service provision — testing, counseling, and treatment education — LGBT advocacy groups felt as if they could pivot away from issues connected to HIV in good conscience. People working on both fronts were adopting a more “establishment” orientation; clinics, barracks, and city halls were the new theaters of operation.
At the same time, the global AIDS-activist movement was coming into its own. It was an optimistic time, and HIV was just the beginning. At meetings where plans were made to loosen the pharmaceutical companies’ control over HIV drugs, the phrase “wedge issue” often entered the conversation. HIV was the leading edge of an attempt to confront global inequalities of all kinds.
“AIDS crystallizes the biological and structural violence of a whole global system in which poverty kills by direct and indirect means,” wrote the authors of Global AIDS: Myths and Facts, an activist anthology published around this time. HIV was and is a wedge issue in part because of the long course of the disease, the many years that most people living with the virus have before they become ill. A symptomatic person with malaria can’t think straight; a person with untreated tuberculosis ought not be in a boardroom. Cholera is debilitating; ditto Ebola. And so it was that people living with HIV began to stand in, literally, at the big tables of board meetings, for people living with malaria and tuberculosis, too. Tackling diseases of poverty meant tackling poverty as well. A robust component of the activism focused on enshrining human rights — protections against gender inequality, homophobia, and the criminalization of sex work and injection-drug use — as essential to the work of treating AIDS.
The activists I worked with were now traveling farther afield: there were long nights and extra passport pages, coffee breath and MacBooks on flights to Qatar and Washington DC and São Paulo and Bangkok for a stream of actions aimed at the pharmaceutical industry, the Office of the United States Trade Representative, the World Trade Organization, and a range of national governments.
I took a well-paying job as an HIV reporter for a big nonprofit focused on HIV-prevention research. I moved to a railroad flat on State Street in Brooklyn and hosted African women who’d come to New York for organizing meetings, HIV conferences, and DC lobby visits. They told me how cold New York City was, hoisted their weight up the stairs at Hoyt-Schermerhorn, chided me for calling spaghetti a proper meal.
By 2000, the global fight for HIV drugs involved a multipronged campaign aimed at world trade regulations that hobbled developing countries’ rights to make or import generic versions of the life-saving drugs needed to stem health emergencies. This led to a major victory: there were huge drops in the price of antiretrovirals, and, in 2001, the UN secretary general Kofi Annan called for a global “war chest” to fight AIDS and started seeking funding for what would eventually become the Global Fund to Fight AIDS, Tuberculosis and Malaria.
Then a force that no one envisioned pancaked these years — the years of the wedge issue and the arc of history bending toward justice with a generous curve that touched down on the visible horizon. These years were crushed into a footnote. Put an asterisk there, or a cross. Because now Giuliani was putting on a hard hat and racing downtown, and people were screaming and the cops were running and there was chaos in the Manhattan streets once more.
In the same State of the Union address in which he launched the war on Iraq, George Bush launched PEPFAR, the President’s Emergency Plan for AIDS Relief. It was the largest disease-specific international-public-health initiative the US government had ever funded, or is ever likely to fund.
Prior to September 11, Bush had already discovered that attacking gays, sex education, and women’s right to control their bodies played very well with a Christian-fundamentalist constituency that had, before his election, been largely moribund. PEPFAR came from the same President who had systematically scrubbed the US Centers for Disease Control and Prevention website of references to condoms and was enforcing an abstinence-only curriculum for sex-education classes across America. It came from the same leader who had, as one of his first acts in office, reinstated the Mexico City Gag Rule, which prohibited recipients of US foreign aid from so much as uttering the word abortion, and who would, as part of the PEPFAR rollout, stipulate that organizations receiving PEPFAR funds sign a pledge repudiating sex work.
With his embrace of African AIDS, Bush effectively de-gayed the issue in the global arena.Tweet
As early as the Reagan era, there had been a de-gaying of the US government response to AIDS. This gained legislative teeth in 1988 with a law, on the books to this day, that prohibits HIV education campaigns from “promoting homosexuality” — hence posters explaining that you can’t get HIV from doorknobs but none explaining how to have safe, pleasurable anal sex.
With his embrace of African AIDS, Bush effectively de-gayed the issue in the global arena. The terrorist attacks offered Bush unprecedented leeway in deploying US money and power across the globe, and PEPFAR was widely interpreted as an effort to display American compassion as the country prepared to wage war in the Middle East. The role that mounting pressure by American AIDS activists played in persuading Bush to take on this particular humanitarian project gets short shrift in many accounts and isn’t mentioned at all in the “official” account of PEPFAR’s creation penned by veteran health reporter John Donnelly.
With PEPFAR, Bush — antichoice, antiscience, antigay — became the world’s most influential anti-AIDS advocate. It was an unexpected move that would cloud the American left’s analysis of the AIDS movement for years to come, causing it to consistently underestimate PEPFAR’s potential.
The first years of the program saw massive grants go to organizations founded and run by evangelical Christians who denounced homosexuality and women’s reproductive choice even as they were tasked with implementing AIDS services whose success depended on a stigma-free and open-minded approach to all clients. One such organization was Shepherd and Anita Smith’s Children’s AIDS Fund — one of a number of Bush-era grantees linked to antigay, antichoice ideologies that continue to receive PEPFAR support today. These official US government investments ran alongside another American funding stream that did not pretend to be about public health at all: Scott Lively and other evangelicals were pouring money into the coffers of preachers and politicians who stoked antigay sentiments and would ultimately support antigay laws in countries like Uganda.
But in spite of these investments and ideological trappings, PEPFAR had, and has, tremendous strengths. It had, and has, a military scale and ambitious targets — in 2003, Bush declared a goal of treating two million people with antiretroviral therapy in the next five years. To meet this target, massive action was required. Rather than giving funds to national governments and letting them decide how to distribute them, PEPFAR retained the right to decide who got the money and what they did with it. Often this meant giving NGOs the funds to start clinics, rather than supporting state-run facilities. The argument was that NGOs could provide higher-quality services than governments and that they could “scale up” programs at a faster rate. It was and is a controversial position. But the reality is that without US money (contributed not only through PEPFAR but also through the Global Fund to Fight AIDS, Tuberculosis and Malaria, launched a year earlier in response to Annan’s call), there really wouldn’t be much of a global fight against the AIDS epidemic, particularly in countries whose health budgets depend on foreign donors.
When the money began to roll in from PEPFAR, grassroots groups saw their budgets balloon overnight. The global movement, which had retained an intimate feel, became increasingly professionalized and localized, focusing on the details of AIDS programs at a national rather than an international level. At this point, AIDS activists had to shift gears. The expertise in treatments, patent laws, and international trade policy that had defined the fight for global access wasn’t sufficient to address the questions that arose now that funding was secure. What did an effective antiretroviral-therapy program look like in Africa? Did it entail drugs alone, or drugs plus social services like support groups and income-generation and school-fees programs? What lab tests were needed to monitor progress and detect potential drug resistance? And how could people be supported in taking their drugs every day even when they started to feel better — a pill-taking paradigm that had few precedents in resource-poor settings?
In the PEPFAR era, global-health professionals began to dominate the discourse about how antiretroviral programs should be delivered, displacing the activists of the previous era. But it wasn’t as simple as one cadre moving in and the other moving on. In the years immediately following the advent of PEPFAR, a number of the activists I had come to rely on as mentors, sounding boards, and sparring partners moved to Africa to gain the expertise needed for this new world. Sharonann Lynch and her partner, Rachel Cohen, moved to Lesotho — neither of them were doctors, but together they helped the Doctors Without Borders program there scale up antiretroviral therapy in record time. Others headed to South Africa for stints with the AIDS Law Project, TAC, or SECTION27 — all NGOs that sought to situate the HIV response in a broader political, rights-based, post-apartheid agenda. Health GAP, which had been a volunteer organization, hired professional staff, and its core members began cycling through eastern and southern Africa.
In 2004, as Uganda’s PEPFAR-funded free-AIDS-drug programs were getting off the ground, I got a Fulbright grant and moved to Kampala to report on what happened when the money arrived. Uganda had been dubbed the poster child for an effective AIDS response on the African continent. President Yoweri Museveni, the canny guerrilla fighter who seized power from Milton Obote in 1986, had sent soldiers to Cuba for training shortly afterward and been dismayed by the medical reports that came back: many of them had tested positive for HIV. He began to sound the alarm about HIV, corralling clergy into providing HIV education from pulpits. When PEPFAR came along, his wife, a born-again Christian, was all too ready to champion the abstinence-only education that so pleased Bush’s Christian-fundamentalist allies. I’d fallen in love with the country on my first visit several years earlier, and I decided to return when it became the centerpiece of early PEPFAR. The first PEPFAR-purchased pill was swallowed by a Ugandan teacher at a clinic in Mbuya Hill, under the outstretched arms of a giant statue of Jesus.
From then on, I crisscrossed the country to sit in clinics, visiting antiseptic-smelling rooms with stout nurses in starched pink-and-white uniforms and programs that were innovative to the point of near utopianism: medicines delivered on motorbikes to treat entire households, footlockers of drugs in pickup trucks traveling to the farthest rural reaches so that the sick and weak did not have to come to the clinics. The results of PEPFAR at this point were thrilling. The number of people on antiretroviral therapy in Uganda doubled over the course of about twelve months, and the range of programs funded made it seem as though the vision of the world that we’d been demonstrating for might actually be coming to fruition. Yes, the First Lady held a parade of virgins and seemed to use every tool at her disposal to undermine condom promotion, particularly for adolescents and young people, who were supposed to be faithful until marriage. But all of this felt, at that time, dwarfed by the enormous power of the programs providing the drugs that hadn’t been there before.
I moved back to America in 2006 but returned to Uganda two to four times a year over the next decade to visit the same clinics, watching as the Obama era dawned and funding for PEPFAR came under attack. Obama’s chief advisers pointed out that keeping people with HIV alive with antiretroviral therapy was a lifetime promise — the recession had begun, and they threw around terms borrowed from the housing crisis: a “treatment mortgage,” they said — suggesting that if people kept on starting therapy on the American dime, we’d find ourselves on the hook for countless years. I watched as an Obama directive led clinics to try to cap their rolls, halting the enrollment of new clients needing treatment. (I also talked to the doctor, Peter Mugyenyi, who leaked that directive to the New York Times and got it reversed.) I saw the motorbikes get sold and the mobile vans get parked as funds dried up and utopia — always expensive — gave way to cheaper and dingier reality. And I watched as Uganda, whose AIDS response had once been lauded as a model of success, slipped back in time: rising rates of new infections, reactionary policies, rudimentary responses.
I made my last long trip to Uganda in 2012, when I was five months pregnant with my second son, ankles swollen and uncomfortable in the equatorial heat. I went because I still could, and because a dear friend was leaving and I loved his house on Lake Victoria more than I loved most places in the world. It was time for him to go, though. My friend was gay, and bills criminalizing homosexuality had begun to appear before the Ugandan parliament.
On one of the last nights of my visit, we went to a gay bar in the center of town. I had been married to my husband for six years by that point, but walking into a room filled with lesbians and gay men still felt like coming home. Alone on the dance floor I twisted my wrists and my hips and smiled all while keeping half an eye out for someone charging through the door in an explosive vest or a military uniform. A woman with cropped hair and low-slung jeans clapped her hands on my waist from behind and pulled me close to her. I’m pregnant, I thought. Also, I’m not even gay anymore. I danced with her anyway, a strange fluttering in my chest — the moth wings of a former life banging against my ribs. But when the song ended, I ran from the dance floor to find my friend.
We’d be natural allies, I thought, the LGBT groups and the groups working on HIV.Tweet
It was no surprise to me at all when, some months after my friend’s departure, Museveni signed a bill criminalizing homosexuality into law. President Obama called it “odious”; secretary of state Hillary Clinton publicly condemned it, too. US-based LGBT rights groups, including HRC and an umbrella group known as the Council for Global Equality, demanded more concrete action. All of a sudden, everyone in the world — by which I mean my world: the left-leaning, globally oriented world — seemed to care about Uganda, to be deeply concerned about the fate of people like the woman who’d been fearless about touching me on the dance floor.
I felt possessive in a way — all this attention and outrage with almost no context or analysis of who Museveni was or why he might be using gays as a scapegoat at this moment in his decades-long presidency. But mostly I felt hopeful.
We’d be natural allies, I thought, the LGBT groups and the groups working on HIV. Since there were fewer and fewer groups focused on the intricacies of PEPFAR and the need to preserve its funding level, I figured that any attention to Uganda by LGBT groups — with their strong historical affinity for AIDS issues, even if those issues weren’t front and center for them anymore — would be good. Surely we could make common cause.
There was also the fact that AIDS was a huge problem for the Ugandan gay population, known, in public-health parlance, as men who have sex with men, or MSM. In 2010 — the first time that it was measured — HIV prevalence among gay men in Kampala was 13.7 percent, more than triple that of adult men in the general population. That study, which was funded by PEPFAR, became a critical advocacy tool both for anti-HIV organizations and for people focused on LGBT rights. By enumerating gay men and other MSM, the study proved homosexuality existed — a not-negligible step in a region where presidents have a propensity for declaring that there are no gays among their citizenry.
Despite this, my fantasy of the two movements joining forces to take on homophobic legislation on the one hand, and faltering support for PEPFAR on the other, proved to be short lived. American LGBT groups were rightly adamant that the US government, as a major donor to Uganda, take concrete steps to show that it opposed the legislation and were ultimately successful in demanding a review of all US government aid to the country. A surprisingly prominent related demand was that PEPFAR itself be condemned for aiding, abetting, and funding homophobic organizations as part of its program. As the LGBT movement saw it, it was not merely a matter of condemning the Ugandan government, but of the US government acknowledging its own contributions to the country’s antigay climate.
Exhibit A in this regard was the Inter-Religious Council of Uganda, an organization that had publicly and vociferously supported the antihomosexuality bill and also received millions of dollars of PEPFAR funding. IRCU had been on the radar of some internationally focused US-based LGBT groups as a “homophobic implementer” receiving PEPFAR funds for years, even as its AIDS-treatment rolls swelled into the thousands. There was no question that it needed to be defunded, but there were real questions about how to take this action without harming PEPFAR’s HIV programs in a country whose epidemic was heating up again after years of decline. Ultimately, the money that had been going to IRCU was given to an Australia-based multinational called CARDNO, which also handles the cleaning up of oil spills, the planning of parks, and the building of military infrastructure.
Having spent years watching Uganda struggle to build a sustainable HIV-drug program using its own governance structures and clinics, I found it hard to see the entrance of CARDNO as an unqualified victory for the fight against HIV. And I learned that that made me part of the problem from the point of view of LGBT rights–oriented activists who felt that people working on HIV had long ago abandoned human rights and were willing to accept outrageous bad behavior as long as the pills kept coming.
Certainly this was not the grand fight for social justice we once imagined. One of the ways that the AIDS-activist movement may have lost its way in recent years is in allowing its focus to narrow to an increasingly technical agenda. But the focus on where and how governments and PEPFAR and the Global Fund to Fight AIDS, Tuberculosis and Malaria invest is animated by the same commitment to the mastery of technicalities that ACT UP–era activists brought to analyzing the AIDS-drug pipeline. Now, however, this wonkishness is seen as a sign of selling out, rather than of digging in.
When I spoke to people outside the AIDS field who were fired up about LGBT rights violations in Uganda, I learned that this sort of deep engagement was difficult for them to imagine because they believed PEPFAR was still the same Bible-thumping, prejudiced program it had been under Bush. They still saw it as an “evangelical gravy train,” in the words of an article published in the Nation that year, even though Obama’s PEPFAR, while underfunded, had at least been stripped of some of its more pernicious “faith-based” elements and had made massive investments in evidence-based prevention, including groundbreaking work with gay men.
I also heard, repeatedly, that global AIDS had all the money while global LGBT rights had none. Why should LGBT activists, who outside America don’t have the kind of corporate and institutional support that props up HRC, add their voices to the cash-rich, professionalized agenda of global AIDS relief?
Of all the explanations I heard for why the two movements couldn’t work together, the most startling was that it was impossible for LGBT activists to work with AIDS activists because there weren’t any AIDS activists left at all. There were only advocates, bureaucrats, medical workers, journalists. The suggestion was that radicalism in public health was essentially dead.
It is true that AIDS professionals far outnumber AIDS activists these days. When I returned from Uganda, I myself took a new job directing advocacy at an AIDS nonprofit. Given that I don’t have a master’s in public health, it’s a job I might not even be interviewed for today. The Consortium of Universities for Global Health reported that university-based global health programs increased from six in 2001 to seventy-eight in 2011, and universities, no longer drawing a distinction between global health as a career path and as an activist issue, have embraced the notion that they can create activists, teach activism. But the kind of activism that draws its strength from people living with or at risk of the disease they’re trying to fight can’t be taught in an institution where, as the public health journalist Helen Epstein has put it, students see “Africa as a career move.”
In the conversations I had with LGBT activists, it sometimes seemed as though PEPFAR itself was being offered up as proof that there were no more AIDS activists — as though its thunderous arrival had marked the end of an era the way AIDS drugs had in 1996. At least initially, the people who made this argument seemed to have little idea about the profoundly high stakes of the epidemic in 2015, or of the urgent work that a handful of people are still doing to fight it.
As of 2012, following years of no or minimal funding increases, PEPFAR still accounted for 73 percent of all bilateral aid for HIV and 49 percent of HIV assistance worldwide. It’s been accused, rightly, of questionable math when it comes to how many people exactly are being treated with PEPFAR-purchased antiretroviral medication, but a study at the end of 2014 showed that the program was directly supporting treatment for 4.5 million people. With a total of about 13 million people on treatment worldwide, this meant the US was paying in one way or another for more than a third of those on antiretrovirals. PEPFAR has also paid for the vast majority of medical male circumcisions — a simple surgical procedure that reduces men’s risk of contracting HIV by at least 60 percent — performed in Africa. It’s the closest thing to a single-shot vaccine that has emerged in the past two decades of the epidemic.
Today, however, PEPFAR is retreating from its male circumcision investments, leaving a yawning gap in many African countries that will without a doubt be filled by new, otherwise preventable cases of AIDS. Overall AIDS funding is falling at the precise moment when a combination of scaled-up male circumcision, antiretroviral access, and access to newer medical innovations like “PrEP” (pre-exposure prophylaxis) could actually bring the global epidemic to an end. But the effort to save what is good about PEPFAR and to critique its caprices, as part of a broader campaign to end the epidemic, is being carried out by a group of people so small they could go out to dinner without calling ahead for a reservation — a group too small to win the battles that still need to be won.
To expand these ranks, we need to understand and address the epidemic of amnesia that’s taken place alongside the viral rampage of HIV. The victories the AIDS-activist movement has secured have always come at a time and at a price that has made them difficult to celebrate. There were no celebrations for PEPFAR, because it came from a homophobic administration and with so many strings attached, just as there were no celebrations for the protease drugs, because they came so late, after so many had already died. These victories have therefore also been traumas, a reality reflected in the way successive chapters of the movement’s history have combined intense anxiety about the legacy of the past with a failure to recognize the demands of the present. The inflection points in this history have been too painful to assess with clarity.
The victories of the AIDS movement have also been, for the most part, victories of science. With each successive advance, we have ceded our bodies and our beloveds to the medical world. We have fought for this, but none of us, when we walk into a hospital or a clinic for ourselves or our comrades, feels gladness, or that we have come home. Home is, and was, the company of fellow activists. We cannot tend to each other well without recognizing and reconciling the ways that love and anger — the twin emotions of the early AIDS activist credo — both animate and confound the struggle.
Right now, this task is incomplete, endangering the efforts of current activists, including the African activists who’ve taken advantage of PEPFAR’s new openness to civil society–engagement to demand that the US government spend its money well in their countries, and the American gay men of color who’ve founded groups like The Counter Narrative, a leading voice in the fight for justice for Michael Johnson. (Johnson, a young gay man living with HIV, faces decades in prison after being convicted under statutes criminalizing the failure to disclose one’s HIV status to a sex partner.) These are the present front lines of an ongoing plague. What they will achieve and how they will be remembered remains to be seen.
On the night of the HRC gala, as I stand in front of the Waldorf, a limousine pulls up at the front entrance and idles for a long time. The windows are tinted black but the driver’s cellphone glows. Finally, without letting anyone out, it starts up again and drives off, perhaps to a side entrance around the corner. Other men attending — for it is mostly men — alight from limousines and taxi cabs shining Gatsby-gold on this dark night. They thread through gaps in the straggling, circling throng. Their suits are tapered, and their legs are slim, and they look like waterbirds picking their steps. They bow their heads as they walk. They do not acknowledge the protest at all, even though the chant, “HRC Fight HIV,” is anodyne. Who could disagree? One can imagine a raised fist, a friendly smile, a nod of solidarity or even a promise to carry the message inside. Instead none of them — not a single one in the hour that I stand watching, my ungloved fingers burning with the cold — even breaks his stride.