The long read: As reports of a mysterious plague swept through the homosexual community in the 1980 s, activists developed shock tactics to get the help they desperately needed.

The experience of demise, which had bind 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 32 nd Street in Manhattan just after two oclock, wending sedately towards the stark black doorway of the Cutting Room, a performance space hosting the memorial service for Spencer Cox, one of the countrys most recognisable Assistances activists. Long before the glass doorways swayed open, a line stretched down the block. Taxis deposited luminaries from the worlds of science and medicine, of theatre, ad, 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, slackened by age or disease or a reluctance to re-enter the community of the grieving. Even the nimble among them wore haunted express. If you knew what to look for, you assured in their faces the burden of a shared past, the years and years of similar services. This was what survivors of the beset looked like.

The crowd swelled to 500. Some among them were adorned in mementos: faded protest buttons or T-shirts with militant mottoes. This was the generation that opposed 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 revolutionary protest organisation 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-1 990 s, when the advent of effective medication eventually staunched much of the succumbing. In the decades since then, it had seemed that the menace had receded, at least in America. But death convoked them one more time.

Few people represented the outbreaks long history in America more than Cox. A college dropout, he was just 20 years old when he received his grim diagnosis. Dedicated only a few months to live, he threw himself into Act up, becoming a central player in the movements treatment and data committee, where patients and their advocates puzzled through the social sciences 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 maintained no facet of their own lives with HIV offstage not his rapid viral mutations, his enlarging lymph nodes, the humiliating and painful diarrhoea that regularly sidelined him, or the cruel complication that turned his left eye cloudy and useless.

That was how I first gratified him. In the winter of 1988, I was reporting for the Village Voice. He brought me his latest laboratory results to help describe how certain experimental medications were thought to work, and how, in fact, they uniformly 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 , has still not been able to grow a beard. But he displayed a researchers grasp of his own cellular tapestry and a facility for rendering complex immunological principles into everyday speech. He was anything but self-pitying. Reaching into a canvas army surplus container, he spun a sheaf of his own laboratory results across the table towards me, accompanied by a line from Bette Davis that was lost on me. Until shortly before then, Cox had learned much of what he knew from the movies, especially those of the 1940 s and 50 s, 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 for New York magazine, the New York Times, GQ, Newsweek, among others, and among the most effective therapy advocates in the field. But his seminal accomplishment came in the area of biostatistics. It was Cox who conceived the medication trial inventions that in record time helped to bring to market the therapies that stopped HIV from being an automatic death penalty. He claimed no credit for this, and until shortly before his death merely a few insiders were aware that a self-taught person with Aids had made this history-changing contribution.

As motions go, the one Act Up spearheaded against HIV was unique. The virus induced its traumatic appearance at different times across the globe perhaps as early as 1920 in what is now known as the Democratic Republic of Congo. After sporadic cases through the 1970 s, the viral outbreak was first reported in New York City and California. On 3 July 1981, Center for Disease control released a report stating that symptoms now known to be typical Aids-related maladies had been exhibited by 26 lesbians humen. That same day, the New York Times reported 41 cases of Kaposis sarcoma a rare and often rapidly fatal kind of cancer affecting 41 gay men in New York and California. Health authorities in the United Kingdom acknowledged the first cases there subsequently that year, and outbreaks reached a handful of European and African nations in 1982. Today , no country has been spared, and 35 million are infected.

But throughout the plague years when no effective treatment existed, and death was quite nearly assured New York City remained the epicentre of the disease, and America the main obstacle to research and therapy. It took two years for the citys mayor, Ed Koch, to acknowledge its existence publicly. President Ronald Reagan waited six. But their words were hollow. Both continued to practise obfuscation, budgetary strangulation, and aggressive apathy even as the number of dead Americans passed 20,000, and 1.5 million more were believed to be infected. By the end of 1986, the citys lesbian ghetto was a tinderbox. Along Christopher Street you could see the dazed looking of the doomed, skeletons and their caregivers alike. There was not even a false-hope pill for physicians to prescribe. The estimations we heard were that half the lesbian humen in New York were already infected, and for the rest of us it was simply a matter of time.

Then one morning in December, bus shelters and bank windows in a large part of Manhattan were covered with large, ominous posters, featuring a pink triangle floating against a black background. This was a potent reminder , not at all an obscure one, of how homosexuals were marked by the Nazis in the camps. The global LGBT movement had long ago reclaimed the pink triangle to signify autonomy. It was the symbol used for lesbian pride marches, on the covers of homosexual publications, on T-shirts from homosexual cruises. But on the mysterious poster, the triangle had been inverted no longer pointing downward like a yield sign, it was depicted there as a pyramid, invoking cosmic power and strength.

Beneath this image was an apprehending message in blocky white letters: SILENCE =D EATH.

Three thousand of these posters ran up, from the East River to the Hudson and stretching north from the Village through Chelsea to Hells Kitchen and the Upper West Side, and as far south as SoHo not just in the lesbian ghetto but in the outposts of the arts communities where allies might find meaning in the message. For a long time, those posters, produced by an anonymous collective, were all anybody “was talkin about a”. Who was behind them? What did they mean? It was obvious that the posters were addressing those of us living inside the beset. Component of the message was easily discerned: on the current course, we were surely doomed. Less clear was what these posters were asking us to do. The slogan suggested a corollary. We knew what the opposite of death was. But what kind of non-silence was being called for?

The fuse was illuminated, and in early 1987 Act Up was formed following a fiery township session at Bailey House, a residency at the far end of the West Village where Christopher Street gratified the Hudson River. Conceived as a place for homeless people with Aids to live out their last days, “its become” the citys LGBT community centre.

Calling itself a diverse group of individuals united in indignation and committed to direct action to end the Aids crisis, Act Up adopted a deceptively simple demand: narcotics into bodies. The New York group grew to several hundred members, described by word of mouth, and chapters quickly proliferated, including in London. Though most were people who were new to political action, the leaders of Act Up were shrewd and relentless, attacking the government and the pharmaceutical industry in mass demonstrations. It took them little time to realise the scientific problem would require leadership: which narcotics into bodies? Even six years into the beset , nobody had a hypothesi for beating Aids.

The Aids campaigner Spencer Cox. Photograph: Walter Kurtz

Spencer Cox joined a small committee to take on the science, hoping that by arming themselves with its language, they could engage scientists in meaningful dialogue. They passed among themselves used textbooks on immunology and virology, cellular biology and medical statistics( they also read Derrida, Foucault, and Genet ). And with the assembling armies of Act Up activists standing outside the doors, they marched into the dorms of science as unwanted then begrudgingly accepted, then admired collaborators. They called this their inside/ outside strategy.

Act Up redrew the blueprint for activism in a media-saturated world, providing inspiration for groups such as Black Lives Matter, pro-democracy activists in Moscow, and even a new generation of Americans mounting daily protests against Donald Trump.

It revolutionised everything from the route medications are researched to the style doctors interact with patients. Ultimately it played a key role in catalysing the development of the frontline narcotics that, following a major breakthrough in 1996, are now maintaining 16 million people aliveworldwide, returning to them the promise of a near-normal lifespan. Some had been merely breaths away from their own deaths. But after a few weeks on treatment they rose from their hospital beds and, against all reasonable expectations, went home to resume an ordinary life. So dramatic was their resurrection that stupefied physicians 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 narcotic combinings. The countrys best physicians tinkered with salvage regimens specifically for him, accomplishing numerous barely-in-time rescues. For more than half his life Cox careened from one medical trauma to another, maintaining his trademark cheery facade, though over day he had grown weary. The last hour I ensure him he spoke of feeling run down. When he checked into the hospital a few a few weeks later, his immune system was severely compromised, putting him at risk of a host of fatal infections.Doctors diagnosed hypoglycemia and severe pneumonia. By the following Tuesday, at 44 years old but wracked and worn as an ageing guerrilla soldier, he died from complications of Aids.

So ran the global Aids pandemic in its fourth decade. A precise number of deaths cannot be fixed, as the majority have occured in the field of sub-Saharan Africa seldom visited by doctors or census takers. At the time of Coxs death, the body count was as high as 40 million virtually twice the desolation of the bubonic beset that threatened humankind in the 14 th century. In the US, 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. Some deceased was downed as suicide statistics, having opted pills or bullets or the high-rise window.

Though so much has changed, so much is still the same. Around countries around the world, two million people still die from Aids every year because the cost of the effective medications under a dollar a day is prohibitive.In America, where the cost is 50 times higher, a federal law has provided the therapy to indigent patients since 1987. This policy was adopted after intense lobbying by leaders of the gay community, but access to the medications was still spotty, because a prescription was required and many patients could not afford the initial pay necessary to visit a doctor.The year Cox died, 13,711 other Americans died of Aids. As in 1981 the outbreaks very first year most belonged to communities that were stigmatised, marginalised, dreaded, or detested. Cox had begun his journey through the plague as a gay human at a time when most Americans supported laws criminalising homosexuality. He finished his life altogether dependent upon social services for his day-to-day living, on probation for war criminals conviction after a descent into drug addiction.

Few of his old colleagues knew about Coxs last days. The members of Act Up had drifted far apart. Even Coxs old HIV-positive support group, the members of which had relied upon each other at the high levels of the crisis and vowed to be at one anothers side when the time came, scattered once Aids became a condition that could for the most component be managed. When we realised we werent going to die, told David Barr, who convened the subsistence group, we all got sick of each other.

Act-Up protesters at the Gay and Lesbian Pride march in New York City, in 1988. Photograph: The New York Historical Society/ Getty Images

That could not have been foreseen at the support groups height. In the epic struggle for survival that consumed the beset years, these men Barr, an attorney by train; Peter Staley, a former bond trader; Gregg Bordowitz, an experimental filmmaker; Derek Link, a former bookstore clerk; Mark Harrington, a movie archivist were among the recognised generals, the architects and administrators of the movements public health strategy. Successive presidential administrations tried their insights, and Nobel prize-winners adopted their criticisms. Global pharmaceutical companies succumbed to their demands, at first out of anxiety of guerrilla protests, later out of respect for their intellects. Espousing their reputations for arrogance and insolence, and their high profile, they had jokingly called themselves the HIVIPs. That anyone with HIV had a chance for an ordinary life was thanks to the work these men did.

Yet their extraordinary journeys had rendered them mostly unprepared for an ordinary life. In countless routes, survival proved as hard to adjust to as the beset itself. Many in the at-risk communities shared this paradox, whether or not they had been infected themselves. Nobody left those years untouched by what they had witnessed , not only the mass demises 100,000 lost in New York City alone but also the foul truths that a microscopic virus had exposed about American culture: legislators who greeted the plague as proof of Gods will, doctors who rejected the main victims medical care, ministers and often even parents who withheld all but the barest shudder of heartache. Such disloyalties would be impossible to forget.

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 organisation to bring attention to these unanticipated problems. In our hour of victory, depression and isolation were growing. So was a disorder labelled survivors guilt, an idea that bind the survivors more to the dead than to the living. Add to this the unrecognised health repercussions common among those diagnosed in the 1980 s including rapid ageing issues, and an onslaught of end-of-life cancers and conditions. Cox insured 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 lesbian people who never experienced the plague. His new organisation 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 dialogue, he bitterly complained that the community that inherited the advances he helped construct, who lived integrated lives as lesbian Americans, who went on to fight for marriage equality and against discrimination in the military, whether or not they had 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 wasnt until after he died that I learned that Cox, a regular poster on the website Gawker, use the nom de plume Shanghai Lil to describe his agony in those final months. Some days, Im fine, and get around with no problem, he wrote. Other days, Im curled in[ the] foetal posture in bed the whole day( and more often, several days ), racked with ache the whole period. Some days Im on the subway getting the stink-eye from some old or pregnant dame who clearly wants my seat, and cant tell simply by looking at me that Im sitting because Im on my style home from a doctors appointment, and if I stand for one more minute, Im going to fall on the ground.

When grieving friends were packing away Coxs possessions after his death, they found a shelf of unopened medicine bottles and a drawer full of unfilled prescriptions. Apparently Cox had stopped taking his hard-won medicine, which accounted for his rapid demise. Angry speculation about this consumed his friends, but most agreed that it signalled a post-trauma syndrome unique to survivors. Many of the 500 people waiting outside the Cutting Room for Coxs memorial service 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 of the Cutting Room swayed open at precisely 2.30. The mood inside was largely sombre and reflective, despite the efforts of the pair of drag queens done up as Joan Crawford and Coxs totem, Bette Davis greeting mourners. A video played campy scenes from the old cinemas that always ran through Coxs mind and frequently spilled from his lips. The camp sensibility was lost on almost nobody except perhaps for Coxs mother, Beverly, who had travelled up from Atlanta. She steadied herself on the arm of Nick Cox, Spencers merely sibling, “whos also” homosexual. They took seats in the first row, alongside friends of the family. A moms grief was a thick wall around them.

When Larry Kramer arrived, one of the organisers took him by the arm. Follow me, I have a seat for you, he said, leading him through the crowd to the second row. Among the activists, Kramer alone was accorded this special therapy. No individual was more responsible for galvanising the Aids movement than Kramer. His plays, volumes, and op-ed pieces over the years pushed the lesbian community to demand that the world take notice. Now 77, he bided as busy as ever, though Aids had slowed him noticeably and he too felt a touch of the survivors syndrome. That morning he had seriously considered not arriving. What eventually motivated him to take a cab uptown was a need to stand with his fellow survivors, for whom his emotions were boundless. Love was always love, anytime and anyplace, Gabriel Garca Mrquez wrote, but it was more solid the closer it came to death.

Chip Duckett, a professional party planner who had organised the affair, strolled to the stage to begin the service. If there was ever any question that Spencer Cox would stop at absolutely nothing to be at the centre of attention he violated for over-eager laughter this is it.

He passed the microphone to a succession of speakers, eventually introducing Mike Isbell, Coxs partner for more than eight years. After their breakup, they had remained friends for many years, but as he had with so many people, Cox pushed Isbell away as his troubles grew. They had not was talking about some time. Spencer often didnt make it easy for people who loved him, Isbell began. The Aids epidemic traumatised Spencer, and I imagine this trauma bided with him until the end. I recollect being at dinner parties some of you were probably there or out to snacks with friends, when individuals would talk about living with Aids and Spencer would immediately reply, Im not living with Aids, Im dying of Aids! Hed say this in a tone of defiance, but I knew he was scared to death.

Isbell spoke of how ironic it was that Spencer lost his way after the treatments came and the lifesaving mission brought to an end. He desperately wanted another life outside of Aids, he said, looking around the overflow room. It seemed that in the treatment era, he was always in search of something but not finding it.

The author, Aids campaigner and lesbian rights activist Larry Kramer, founder of Act up. Photograph: New York Times Co ./ Getty Images

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 Coxs death and life. Staley was among a small group of people who had raced to Coxs side when they had learned about the final hospitalisation. By the time he arrived, Cox was already in steep decline: he had gone into cardiac arrest three times, and his kidneys had failed. Staley stood outside the hospital door as medical personnel rushed in and out. Staley could hear the defibrillator lifting Coxs chest off the table again and again. When Cox was stabilised, Staley and Tim Horn, another activist, were allowed inside briefly. Minutes later came another heart attack and the other brutal resuscitation.

From his telephone, Staley posted a note to a private Facebook message group where he had been coordinating is supportive of 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 had died. I slumped, lightheaded and bereft, against a plate glass window.

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

He told: I first satisfied Spencer when he started depicting up at Act up meetings in the fall of 88. 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 standardised regimens. Eight million lives saved. Its a stunning legacy, and so bittersweet. How could that young gay human, confronted with his own demise, respond with a level of genius that affected millions of lives but failed to save his own?

Staley spoke of Coxs last failed explode 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 humen from the plague years often suffered from, irrespective of HIV status. While many of us, through luck or circumstance, have landed on our feet, all of us, in some way, have unprocessed heartbreak, or guilt, or an overwhelming sense of abandonment from their home communities that turned its back on us and increasingly stigmatised us, all in an attempt to feign that Aids wasnt a number of problems any more.

He scanned the vacuum-quiet room. That is Spencers call to action, he told, and we should take it on.

This is an edited extract from How to Survive a Plague, published by Picador on 1 December. There will be a special screening on Thursday 1 December of David Frances film How to Survive a Plague at the Cinema Museum, London SE1 1, at 7pm; it will be introduced by Peter Staley .

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