Spencer Cox, the pivotal AIDS activist who co-founded two important and ongoing initiatives, died this morning at Columbia Presbyterian of AIDS related causes. He was 44 (March 10, 1968).
As a very young man fresh from Bennington, where he studied Theater and English Literature, he arrived in NYC after finishing just 3 years. He was diagnosed with HIV soon thereafter. By 1989, at age 20, he had become spokesman for ACT UP during its zenith through the early 90s. A member of its renowned Treatment & Data committee, and later co-founder of TAG (the Treatment Action Group), he schooled himself in the basic science of AIDS and became something of an expert, a “citizen scientist” whose ideas were sought by working scientists. In the end, Spencer wrote the drug trial protocol which TAG proposed for testing the promising protease inhibitor drugs in 1995. Adopted by industry, it helped develop rapid and reliable answers about the power of those drugs, and led to their quick approval by the FDA.
Even before ACT UP, he began work for amfAR, first as a college intern, eventually going on staff as assistant to Director of Public Affairs, responsible for communications and policy. He left there to co-found the Community Research Initiative on AIDS (now the AIDS Community Research Initiative of America, ACRIA) with Dr. Joseph Sonnabend and Marisa Cardinale. At ACRIA, he ran public affairs and edited all publications.
From 1994 to 1999, he was Director of the HIV Project for TAG, where he did his groundbreaking work in drug trials designs. He designed the drug trial adopted in part by Abbott as they were developing Norvir, the first Protease Inhibitor to head into human trials. It had an “open standard-of-care arm,” allowing people on the control arm to take any other anti-AIDS drugs their doctors prescribed, versus the arm taking any other anti-AIDS drugs plus Norvir. It was this study that showed a 50% drop in mortality in 6 months. Norvir was approved in late 1995. Though the results were positive, the proposal sharply divided the community, many of whom thought it was cruel to withhold Norvir on the control arm. Spencer defended himself in a controversial BARON’S coverstory that made him, briefly, the most-hated AIDS activist in America. Ultimately he was vindicated.
“Spencer single-handedly sped up the development and marketing of the protease inhibitors, which currently are saving 8 million lives,” says TAG executive director Mark Harrington. “He was absolutely brilliant, just off the charts brilliant,”
After the plague was transformed with the drug revolution, he was the first to see there would be a psychological burden to address in the gay community members who survived the worst of the epidemic. He founded the MEDIUS INSTITUTE FOR GAY MEN’S HEALTH, a think tank focusing on gay male emotional health. MEDIUS produced several important reports but failed to find the financial support it needed to continue his work.
His HIV infection was initially responsive to the medications, but he began developing resistance around 2000. He was hospitalized in 2009 with AIDS related symptoms, but eventually returned to health. He entered Columbia Presbyterian on the 13th.
I interviewed Spencer many times over the years, perhaps even in the NYT pages. I quoted his prescient observations in 2008 in this article: http://nymag.com/news/features
I also feature him in the 2012 film HOW TO SURVIVE A PLAGUE. He wrote about that experience his last blog for POZ: “If I have one piece of advice for young, aspiring activists, it is to always hold on to the joy, always make it fun. If you lose that, you have lost the whole battle.”
In an outtake from my interview with him, which I am posting on FB today, he describes what, if any, lessons came from the plague, and from the remarkable effort it took to develop effective drugs, 15 years after HIV’s first headlines in 1981:
“What I learned from that is that miracles are possible, miracles happen, and I wouldn’t trade that for anything. I wouldn’t trade that information for anything. I don’t know what’s going to happen. I don’t know what’d going to happen day to day. I don’t know what’s going to happen next year. I just know, you keep going. You keep evolving and you keep progressing, you keep hoping until you die. Which is going to happen someday. You live your life as meaningful as you can make it. You live it and don’t be afraid of who is going to like you or are you being appropriate. You worry about being kind. You worry about being generous. And if it’s not about that what the hell’s it about?”
Born Patrick Spencer Cox — in Decatur GA, I believe.
David France | Producer/Director
“How to Survive a Plague”
A memorial service for AIDS activist Spencer Cox will be held on Sunday, January 20 at The Cutting Room, 44 East 32 Street (at Park Ave), New York City. It will run from 3 to 6 pm. Please be sensitive and ensure priority seating for family and friends.
Spencer Cox’s family and friends are honored to announce the establishment of three memorial funds in his name, in lieu of requests for flowers and other sentimental gestures he would likely find deplorable. We hope that everyone will consider giving — and digging deep — to help these organizations:
Broadway Cares/Equity Fights AIDS
[If donating online, please write "Spencer Cox" in the "in memory of" field.]
Ali Forney Center
[A page for donating in Spencer's memory has been set up by the Ali Forney Center.]
HeavenSent Bulldog Rescue
[Checks are best, with "In memory of Spencer Cox" added to memo/note line.]
All donations are 100% tax deductible.
The International Association of Providers of AIDS Care will be establishing a scholarship fund in Spencer’s memory.
New York Times Obituary
Spencer Cox, AIDS Activist, Dies at 44
By BRUCE WEBER
Published: December 21, 2012
Spencer Cox, an AIDS activist whose work with a cadre of lay scientists helped push innovative antiretroviral drugs to market, creating the first effective drug protocols to combat the syndrome, died on Tuesday in Manhattan. He was 44.
His death of AIDS-related causes at the Allen Hospital in Upper Manhattan was confirmed by his brother, Nick.
Mr. Cox was a prominent voice in the fight against AIDS for more than two decades. After three years as a student at Bennington College in Vermont, he moved to New York. By 1989, at age 20, he had joined the AIDS Coalition to Unleash Power, better known as Act Up, the organization devoted to pushing government and private industry, often with demonstrations, sit-ins and other tactics, to dedicate more resources for AIDS treatment and prevention.
In 1992, he was among the Act Up members who formed the Treatment Action Group, known as TAG, to focus on accelerating treatment research.
Along with other TAG colleagues, Mr. Cox schooled himself in the science of AIDS, the workings of drug trials and the government approval process. While still in his 20s he represented people with AIDS in high-level meetings with the Federal Drug Administration and other agencies and private companies.
“You can’t understand how incredibly scary it was for him to sit down at the table of the F.D.A. Anti-Viral Advisory Committee as the ‘P.W.A. representative’ and take on the scientific establishment,” David Barr, an original TAG member, wrote in a Facebook post about Mr. Cox. He added: “It took incredible courage and a whole lot of arrogance. You need to understand how lonely it was to sit at those tables, how much you felt like a complete fraud, yet also right and right to be there.”
In 1995, when antiretroviral drugs known as protease inhibitors began to show promise for treating AIDS patients, Mr. Cox designed a human drug trial for one of the earliest, ritonavir, which was being developed by Abbott Laboratories. The trial created two groups: one would continue taking the medications already prescribed by their doctors and receive a placebo, the other would continue on their medications and also receive ritonavir.
The plan was controversial because no one wanted to receive a placebo, and many AIDS patients and activists believed the best course of action was to approve the drug first and test later. Mr. Cox’s design, however, allowed for both speedy data gathering and a relatively accelerated approval process.
After six months, those on the ritonavir had half the mortality rate of those on the placebo; the drug was approved on Feb. 28, 1996. The next day, a rival drug developed by Merck, indinavir, was approved as well.
“Spencer pushed for data-driven decisions,” Dr. Anthony S. Fauci, director of the National Institute of Allergy and Infectious Diseases, said in an interview on Wednesday. “He wanted the facts and was always very meticulous about getting good data rather than just screaming for getting something approved. It’s a great loss. He was part of a historic group of people.”
Patrick Spencer Cox was born in Atlanta on March 10, 1968. His parents, Jerry and Beverly, were both accountants. At Bennington, he studied theater and literature and aspired to be an actor and playwright. He discovered he was H.I.V. positive shortly after arriving in New York. His mother and brother survive him.
A young Mr. Cox can be seen in the documentary about Act Up, “How to Survive a Plague.” In recent years he wrote on AIDS issues for POZ and other publications, and founded a short-lived organization called the Medius Institute for Gay Men’s Health, which was concerned with issues faced by gay men as they grow older, among them loneliness, depression and substance abuse.
Mark Harrington, the executive director of TAG, said Mr. Cox himself struggled with an addiction to methamphetamines. Some months ago, he said, a despairing Mr. Cox had apparently stopped taking his medication.
“He saved the lives of millions, but he couldn’t save his own,” Mr. Harrington said.
Mark S King
Grief Is a Sword: A Eulogy for Spencer Cox
This eulogy was delivered at “Spencer Cox: A Celebration of Life,” a memorial service held on Sunday, Jan. 20, 2012, at The Cutting Room in New York City.
I want to remember the activist. I first met Spencer when he started showing 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.
Spencer started by joining ACT UP’s most intimidating committee. The Treatment and Data gang was a pack of know-it-all divas who expected new members to climb the learning curve fast and burn their own paths. He did both in short order and quickly earned the respect and friendship of these self-taught expert activists. It didn’t hurt that he was one of the few who could out-smoke Mark Harrington, or that he provided a constant soundtrack of dark humor to our often depressing work.
But it’s when our activism started to pivot that Spencer really began to shine. AIDS treatment activists began with fury and blind hope that if we just pushed hard enough, we could force the system to find the cure or near-cures that were surely out there. But they weren’t, and a simple bureaucratic fix wasn’t going to save us.
Spencer and the other science geeks led this pivot. We could no longer take shortcuts around the tenets of scientific discovery. We must instead devise new and creative methods to use those basic tenets for our ultimate goals. Spencer, in particular, became almost religious about this new science-driven activism.
He and the other geeks started the pivot by challenging the hard-fought and hard-won orthodoxy of gay men threatened by AIDS from our politically active enclaves in New York and San Francisco, from neighborhoods like Greenwich Village, Chelsea and the Castro. We demanded and got our quick FDA approvals. We used our often gay and truly heroic HIV specialists, becoming experts together, custom tailoring novel regimens from approved and unapproved treatments alike. Over time we got more AZT knockoffs approved, with less and less applicable info on how to use them to actually save lives.
That’s when the science geeks made their courageous play. Spencer slammed the status quo. He testified before the FDA about the accelerated approval of the third AZT knockoff, d4T, saying, “The approval of therapies based on inadequate, ambiguous, uninterpretable or incomplete data offers severe and potentially insurmountable difficulties in the future evaluation of new treatments. This is the deck with which the current therapeutic house of cards was built.”
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. We were family, albeit one with lots of incest happening.
Spencer played a key role when TAG launched an audacious campaign challenging Hoffmann-La Roche’s blatant attempt to get their protease inhibitor approved without providing the necessary real-world data on how to use it. I remember having my doubts at the time. Should TAG really go out on a limb like this, infuriating most of the other AIDS groups that sought to defend our hard-won regulatory reforms?
Spencer patiently walked me through the arguments for challenging the self-help orthodoxy we ourselves had helped build. He made his case not with science or statistics but with ethics. This was about moving beyond a status quo that provided the illusion of serving only a privileged few. This was about serving the greater good. This was about health care for all, built on a democratization of data, not just drugs. We needed answers, not just access. We needed clinical trial data that could be used for standards of care in all resource settings so that the guessing would end and clear treatment guidelines would save the greatest number of lives.
He was right, of course, and today we have highly detailed treatment guidelines, backed by interpretable data and adjusted for resource settings around the world. Eight million people 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?
This death hit us hard. We have grappled to make sense of it. Why did he stop his meds? What role did his struggle with crystal meth play? Was this a failure of community? Are there lessons we can learn?
These aren’t just nosy questions by idle bystanders. There are thousands of survivors of the plague years who, in small ways and large, feel damaged and vulnerable. All of us have felt the pain and helplessness of watching a friend struggle with meth.
The details of Spencer’s own struggle with it, or even if there was a struggle this past year, remain shrouded in the wildly divergent opinions of those who knew him. I saw him after his return to New York, and he was the Spencer of old, campily dismissive of almost everything and everyone, cutting in his humor and with grand plans for the future, including walking the red carpet at the Oscars. He shined at the premiere of How to Survive a Plague, comforted Sarah Jessica Parker after a screening a few weeks later and wowed a crowd of health care workers at St. Luke’s Hospital during a post-screening panel we did together just a few weeks before he died.
What we do know for sure is that a great deal of his life came crashing down in 2008 because of his struggles with addiction, and he was still far from rebuilding that damage. The debate that has ensued since his death between frustrated community activists and harm reductionists is worth having. We need to find some common ground that is neither complacent nor stigmatizing.
Given Spencer’s activism, his treatment interruptions were confounding. There were at least three over the last decade, all resulting in dangerous hospitalizations. When asked why, he would evade, probably realizing that the answers would be too painful to explain.
His last burst of activism was explanation enough. 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 its problem anymore.
That is Spencer’s call to action, and we should take it on.
Maybe we’ve overanalyzed his death. The whys might be better explained by this young man’s complexities, his genius and wit, and the flip side of that coin: his very human imperfections. The larger issues his death raised for our community should be explored but not manipulated from what was, in the end, a man’s uniquely beautiful, courageous and fallible life.
It is his activism I will remember.
In Paul Monette’s Last Watch of the Night: Essays Too Personal and Otherwise, he writes of his lover’s death from AIDS and his own imminent one in the essay “3275,” which is the plot number of Monette’s gravesite with his lover’s on Revelation Hill at Forest Lawn Cemetery:
We queers on Revelation Hill, tucking our skirts about us so as to not touch our Mormon neighbors, died of the greed of power, because we were expendable. If you mean to visit any of us, it had better be to make you strong to fight that power. Take your languor and easy tears somewhere else. Above all, don’t pretty us up. Tell yourself: None of this ever had to happen. And then go make it stop, with whatever breath you have left. Grief is a sword, or it is nothing.
WATCH (Extended insights and background):