David France on the AIDS activists who changed the world

29 November 2016

We publish David France's How To Survive A Plague on World AIDS Day, December 1st. Read an extract from this powerful and profoundly moving story of how activists and scientists saved millions of lives. 

The experience of death, which had bound them together a quarter of a century ago, unexpectedly reunited them on an unseasonably warm January afternoon in 2013. 

They made their way down East Thirty-second Street in Manhattan just after two o’clock, wending sedately toward the stark black doorway of the Cutting Room, a performance space hosting the memorial service for Spencer Cox, one of the country’s most recognizable AIDS activists.

Long before the glass doors swung open, a line stretched down the block. Taxicabs deposited luminaries from the worlds of science and medicine, of theater, advertising, and media, of activism, art, and academia, people from all over the United States, from Europe and Africa.

Many of them were hollow cheeked and balanced on canes or on one another, slowed by age or disease or a reluctance to reenter the community of the grieving. Even the nimble among them wore haunted expressions.

If you knew what to look for, you saw in their faces the burden of a shared past, the years and years of similar services. This was what survivors of the plague looked like.

The crowd swelled to five hundred. Some among them were adorned in mementos: faded protest buttons or T-shirts with militant slogans. This was the generation that fought AIDS from the dawn of the global pandemic. Most had been members or supporters of the AIDS Coalition to Unleash Power, or ACT UP - the radical protest organization that started in New York City but went on to count 148 chapters in 19 countries, with perhaps 10,000 members at its peak.

The movement collapsed in the mid-1990s, when the advent of effective medicine finally staunched much of the dying. In the decades since then, it had seemed that the menace had receded, at least in America. But death convoked them once again.

Few people personified the epidemic’s long history in America more than Cox. A college dropout, he was just twenty years old when he got his grim diagnosis. Given only a few months to live, he threw himself into ACT UP, becoming a central player in the movement’s Treatment + Data Committee, where patients and their advocates puzzled through the science of virology, chemistry, and immunology.

Their insights won them audiences with researchers in the deepest corridors of science - audiences, then respect, then working partnerships; it was the first time patients had joined in the search for their own salvation.

Cox, a consummate networker, illustrated the developing science by submitting his own health complications to the scrutiny of reporters. In his drive to give the disease a face, he kept no aspect of his life with HIV offstage - not his rapid viral mutations, his enlarging lymph nodes, the humiliating and painful diarrhea that regularly sidelined him, or the cruel complication that turned his left eye cloudy and useless.

That was how I first met him. In the winter of 1988, he brought me his latest laboratory results to help describe how certain experimental drugs were thought to work, and how, in fact, they routinely failed.

We met in a dark coffee shop late in the morning. Short and smooth faced with dark eyes and floppy black hair, he arrived Brando style in industrial work boots, jeans tight as a sunburn, and a black leather bomber jacket over a white t-shirt - the uniform of ACT UP.

His youth disarmed me. He looked like a teenager, not yet able to grow a beard. But he displayed a researcher’s grasp of his own cellular tapestry and a facility for rendering complex immunological principles into everyday language. He was anything but self-pitying. Reaching into a canvas army surplus bag, he spun a sheath of his lab results across the table, accompanied by a line from Bette Davis that was lost on me. Until recently, Cox had learned much of what he knew from the movies, especially those of the 1940s and ’50s, or the theater, which had been the subject of his aborted education.

Over the ensuing years, he became a principal source for much of my AIDS reporting, and among the most effective treatment advocates in the field. But his seminal achievement came in the area of biostatistics.

It was Cox who conceived the drug trial innovations that in record time helped to bring to market the therapies that stopped HIV from being an automatic death sentence.
 
He claimed no credit for this, and until shortly before his death only a few insiders were aware that a self-taught person with AIDS - by training an actor - had made this history-changing contribution.
 
Since that stunning breakthrough in 1996, the new treatments had reached millions of people worldwide, returning to them the promise of a near-normal life-span. Some had been just breaths away from their own deaths. But after a few weeks on treatment they rose from their hospital beds and, against all reasonable expectation, went home to resume an ordinary life. So dramatic was their resurrection that stupefied doctors began calling it the Lazarus effect.

And yet the pharmaceutical marvels Cox fought so hard to bring into existence failed him in the end. His infection proved to be resistant to many drug combinations. The country’s best doctors tinkered with 'salvage' regimens specifically for him, accomplishing numerous barely-in-time rescues.

For over half his life Cox careened from one medical trauma to another, maintaining his darkly comic facade, though in recent years he had grown weary. The last time I saw him he spoke of feeling run-down. When he checked into the hospital a few weeks later, his viral load was overbearing and his T-cell count, which had been in the healthy range, had sunk to just thirty, putting him at risk for a host of fatal infections. Doctors diagnosed hypoglycemia and severe pneumonia. By the following Tuesday, forty-four years old but wracked and worn as a guerrilla commandant, he died from multiple complications of AIDS.

So went the global AIDS pandemic in its fourth decade. A precise number of the dead can’t be fixed, as the majority have fallen in areas of sub-Saharan Africa unknown to doctors or census takers. At the time of Cox’s death, the body count was as high as forty million, which is nearly twice the devastation of the bubonic plague that threatened human-kind in the fourteenth century.

In the United States, the official count was 658,507 dead by the end of 2012 - an approximate figure, despite its ring of precision. In the early years especially, many people were declared dead from other causes in order to spare the relatives from stigma or because doctors mistook the symptoms. Or the deceased went down as suicide statistics instead, having chosen pills or bullets or the high-rise window over the inevitable.

Though so much has changed, so much is still the same. Around the globe two million people still die from AIDS every year because the cost of the effective medicines - under a dollar a day - is prohibitive.

In America, where the price is fifty times higher, a federal law provided the treatment to indigent patients since 1987, adopted under intense lobbying by gay leaders, though access to the medicine was spotty nonetheless, because a prescription was required and many could not afford to visit a doctor.

The year Cox died, 13,711 other Americans were claimed by AIDS. As in the epidemic’s very first year, most belonged to communities that were stigmatized, marginalized, feared, or hated. Cox had begun his journey through the plague as a gay man at a time when most Americans supported laws criminalizing homosexuality. He finished his life entirely dependent upon social services for his day-to-day living, and on probation for a criminal conviction after a descent into common drug addiction.

Few of his old colleagues knew about Cox’s last days. The members of ACT UP had drifted far apart in recent years. Even Cox’s old HIV- positive support group, men who had relied upon one another in the way one does in wartime and made a blood vow to be at one another’s side when the time came, scattered once AIDS went from a mostly fatal disease to a condition that could for the most part be managed. 'When we realized we weren’t going to die,' said David Barr, who convened the support group, 'instead we all got sick of each other.' 

That could not have been foreseen at the support group’s height. In the epic struggle for survival that consumed the plague years, these men - Barr, an attorney by training; Peter Staley, a former bond trader; Gregg Bordowitz, an experimental filmmaker; Derek Link, a onetime bookstore clerk; Mark Harrington, a film archivist - were among the recognized generals, the architects and administrators of the movement’s public health strategy.

Successive presidential administrations sought their insights, and Nobel Prize winners adopted their critiques. Global pharmaceutical companies succumbed to their demands, at first out of fear of guerrilla protests and later out of respect for their minds. Embracing their reputations for arrogance, insolence, and prominence, they had jokingly called themselves 'the HIVIPs.'

That anyone with HIV had a chance for an ordinary life was thanks to the work they did.

Yet their extraordinary journeys had rendered them mostly unprepared for an ordinary life. In countless ways, survival, unexpected as it was, proved as hard to adjust to as the plague itself. Many in the at-risk communities shared this paradox, whether or not they’d been infected themselves.

Nobody left those years uncorrupted by what they’d witnessed, not only the mass deaths—100,000 lost in New York City alone, snatched from tightly drawn social circles—but also the foul truths that a microscopic virus had revealed about American culture: politicians who welcomed the plague as proof of God’s will, doctors who refused the victims medical care, clergymen and often even parents themselves who withheld all but a shiver of grief.

Such betrayal would be impossible to forget in the subsequent years. As when the gates of Auschwitz were thrown open at last, this new era only made it possible to finally grasp the hideousness of what came before. 

The burden of memory was something Cox spoke about with deep insight. Sensing its toll on the mental health of survivors, he formed a new organization to bring attention to the second crucible. In our 'hour of victory,' depression and isolation were expanding problems. So was a syndrome labeled 'survivor’s guilt,' an idea that bound those who remained more to the dead than to the living.

Add to this the unrecognized health consequences common among those diagnosed in the 1980s - including rapid aging issues, and an onslaught of end-of-life cancers and conditions. Cox saw all of this coming. He issued white papers and penned op-eds, but despite those efforts, he was unable to spark the interest of researchers or funders, much less of the generation of gays who never experienced the plague. His new organization withered, and he sank deep into his own depression and isolation.

I remained closer to him than most of his friends over his final year. In our last conversation, he bitterly complained that the community that inherited the advances he helped wrought, who lived integrated lives as gay citizens, who went on to fight for marriage equality and against discrimination in the military, whether or not they’d been infected, had abandoned his generation and forgotten the events that had shaped them.

He felt erased, his suffering - which in the past had enlightened the public and challenged science - suddenly insignificant. His new policy was to talk as little about his personal health as possible. It wasn’t until after he died that I learned that Cox, a regular poster on the website Gawker, used the nom de plume 'French Twist 40' to describe his agony in those final months. 'Some days, I’m fine, and get around with no problem,' he wrote. 'Other days, I’m curled in [the] fetal position in bed the whole day (and more often, several days), racked with pain the whole time. Some days I’m on the subway getting the stink-eye from some old or pregnant lady who clearly wants my seat, and can’t tell just by looking at me that I’m sitting because I’m on my way home from a doctor’s appointment, and if I stand for one more minute, I’m going to fall on the ground.'

When grieving friends were packing away Cox’s possessions after his death, they found a shelf of unopened medicine bottles and a drawer of unfilled prescriptions. Apparently Cox had stopped taking his hard-won medicine, accounting for his quick demise.

Angry speculation about this consumed his friends, but most agreed it signaled a post-trauma syndrome unique to survivors. Many of the five hundred people waiting outside the Cutting Room recognised that they shared the symptoms. In the tradition of the movement, people in line accorded it an irreverent name - AIDS Survivor Syndrome, or ASS - and took it very seriously.

The doors swung open at precisely 2:30. The mood inside was mostly somber and reflective, despite the efforts of a pair of drag queens done up as Joan Crawford and Cox’s totem, Bette Davis, greeting the mourners. A video played scenes from the old films that always ran through Cox’s mind and frequently spilled from his lips.

The camp sensibility was lost on almost nobody except perhaps for Cox’s mother, Beverly, who had traveled up from Atlanta. She steadied herself on the arm of Nick Cox, Spencer’s only sibling, who was also gay. They took seats in the first row, alongside friends of the family. A mother’s grief was a thick wall around them.

Peter Staley was the last to speak. He had been unable to sleep the previous few nights, struggling to find the words to make sense of Cox’s death and life. Staley was among a small group of people who had raced to Cox’s side when they’d learned about the final hospitalization. By the time he arrived, Cox was already in steep decline. He’d gone into cardiac arrest three times, and his kidneys had failed.

Staley stood outside the hospital door as medical personnel rushed in and out. He could hear the defibrillator lifting Cox’s chest off the table again and again. When Cox was stabilized, Staley and Tim Horn, another activist, were allowed inside briefly. Minutes later came another heart attack and another brutal resuscitation.

From his telephone, Staley posted a note to a private Facebook message group where he’d been coordinating support for Cox. It landed in my phone with a vibration and a jingle as I stood in the cold morning sun on Sixth Avenue, a mile and a half away: Spencer passed. I slumped, lightheaded and bereft, against a plate glass window.

The four weeks between then and the memorial service had done little to dim Staley’s pain. He placed the pages of his planned eulogy on the small lectern, squinting into the harsh stage lighting to study the faces before him.

He said, 'I first met Spencer when he started showing up at ACT UP meetings in the fall of ’eighty-eight. We were all so young. I was younger than most. But he was seven years my junior.' 

He caught his breath, remembering.

'It was a wonder watching him wow the FDA, and in meetings with the biggest names in AIDS research, like Anthony Fauci. He earned the respect and the love of his fellow science geeks and those of us lower down the learning curve. . . . Eight million on standardized regimens.' 

'Eight million lives saved. It’s a stunning legacy, and so bittersweet. How could that young gay man, confronted with his own demise, respond with a level of genius that impacted millions of lives but failed to save his own?'

Staley spoke of Cox’s last failed burst of activism, and called on the weathered activists to snatch meaning from his death.

'He spoke out forcefully about the depression and PTSD that the surviving generation of gay men from the plague years often suffered from, regardless of HIV status. While many of us, through luck or circumstance, have landed on our feet, all of us, in some way, have unprocessed grief, or guilt, or an overwhelming sense of abandonment from a community that turned its back on us and increasingly stigmatized us, all in an attempt to pretend that AIDS wasn’t a problem anymore.'

He scanned the vacuum-quiet room. 'That is Spencer’s call to action,' he said, 'and we should take it on.'

 
It tells the story of the AIDS epidemic and the grass-roots movement of activists, many of them facing their own life-or-death struggles, who grabbed the reins of scientific research to help develop the drugs that turned HIV from a mostly fatal infection to a manageable disease.
 
Around the globe, the 15.8 million people taking anti-AIDS drugs today are alive thanks to their efforts.
 
'Epoch-making: the whole social and scientific history of AIDS, brilliantly told. Informative, entertaining, suspenseful, moving, and personal.' - Edmund White
 

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