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The Riddled Death Of Spencer Cox

by Chivas Sandage on January 12, 2013

in Analysis,Chivas Sandage,HIV/AIDS

Post image for The Riddled Death Of Spencer Cox

Chivas Sandage writes a profound tribute to Spencer Cox and challenges us to question why the man who wrote the breakthrough drug trial protocol that saved millions of lives likely died because he didn’t take his medication.

I wanted to write a tribute titled “Didn’t We Get Arrested Together?”—Spencer’s favorite pick-up line—but hit a wall of questions. How could a key activist and spokesman for the pivotal organization ACT UP, a co-founder of the Treatment Action Group, and the director of the HIV Project for TAG—a self-taught “citizen scientist” who passionately fought and won the battle against AIDS for himself and for all of us for almost twenty-five years—so quietly succumb to AIDS-related pneumocystis pneumonia at the age of 44?

If Spencer Cox wrote the controversial, groundbreaking drug trial protocol that saved millions of lives, why would he stop taking the medication that he helped make available and which had already saved him, ultimately gambling with and finally inviting his own death?

Why would key AIDS activist Mark Harrington and others claim that Spencer had returned to using methamphetamines when some of his closest friends counter that’s not true—not the man they knew in his last years?

How could Spencer’s significant contribution to AIDS research—co-designing and personally writing the drug trial for the early protease inhibitor that was approved in only six months, making AIDS no longer a death sentence—go unattributed to him in David France’s recent Academy Award nominated documentary How to Survive a Plague? He’s a handsome face in numerous frames and a felt presence. He has a few lines. The addition of a single brush stroke could have helped define Spencer’s role (and notable character) in a film that understandably focuses on the more prominent activists. In fact, France made a powerful clip of Spencer’s last interview for the documentary available on YouTube and Facebook but it isn’t in the film. That haunting footage is just an outtake. How ironic for a man who had been an actor and playwright to see himself so faintly sketched into the story of his life. After the filming and screenings and parties, how did he feel about having a minor part in his legacy, while he was dying of the disease he so victoriously fought?

After defending his controversial protocol in Barron’s made him, as France says, “briefly, the most-hated AIDS activist in America,” how is it that he came to be considered a friend by thousands in the gay community in addition to friends from college and high school and countless people who never met him in person yet corresponded with him frequently—even daily—on Facebook and other social networking sites?

Even some of those closest to Spencer through the years are struggling to understand the mystery of this brilliant, generous, devilishly quick-witted, charismatic, and complex man’s death. When obits claiming Spencer died of AIDS-related illness were followed by others linking his death to drug addiction and/or not taking prescribed medications, Internet discussions flared. More obits and articles and blog posts about him (and comments on all of the above) continue to roll out. Strangers, fellow activists, colleagues, exes, old friends, mentors, and conservative trolls all have something to say.

Spencer500The scroll of his Facebook wall is full with weeks of remembrances, links and photos. In one Bennington-era snapshot, a gorgeous, dark-haired boy wearing a disheveled, untucked, deeply unbuttoned white shirt carries a long-stemmed red rose between his teeth and looks right into you.

Follow Spencer’s tracks and you’ll be reminded and/or learn: AIDS is #6 among leading causes of death for Americans between the ages of 25-44; gay and bisexual men of all races account for the majority of those with HIV; Black and Latino communities are significantly and disproportionately affected; half of the 1.1 million who are HIV positive in this country do not have health care; one out of every five people with HIV is unaware they are infected; depression and risk-taking behaviors including substance abuse and unsafe sex amongst middle-aged gay men are all diagnostic symptoms of PTSD.

Spencer was a veteran of the war we don’t call war; he was a hero amongst heroes that are largely unknown to most of the nation. His death makes every bit as much terrible “sense” as my combat photographer father’s death from a “war-related” illness called alcoholism-induced cirrhosis of the liver. Spencer just lasted a little longer than my dad after returning home from the front lines. Combat veterans like Spencer struggle to ever fully return. When you’ve fought that hard and seen the faces of men you love—so many still just sweet-faced boys—collapse around you, one after another, slowly or quickly dying, some in your arms while others live but are never the same again, it changes you.

How can day-to-day life ever compare to the steady, cyclic adrenaline rush of literally fighting for your life and the lives of those around you, or the deep-seated camaraderie of surviving, eating, drinking, and partying with men who you share a bond with like no other you’ve known, or working harder than you know how to, doing work that makes a difference—even makes history. How, after all that, how do you settle and stay settled in the “civilian” life year after year, decade after decade?

Spencer Cox_1The meetings, support networks, protests, and actions that punctuated Spencer’s days as a younger man simply don’t exist in the same way or to the same degree as they once did. In the minds of many, the AIDS epidemic is supposedly “over.” But we’ve got half a million people taking a handful of relatively expensive drugs every day. And no cure. And no vaccine.

Yes, it appears that what we have is a pharmaceutical dream—continual demand with no end in sight.

The person I most want to ask about Spencer is Spencer. So I went to him—went to his words—looking for clues.

Nothing I’ve read prepared me for what he had to say about his last months.

I happened upon his outed Gawker alias “FrenchTwist40.” About two and a half months before he died, he got caught up in a volley about class issues in America. The article in question was about one percenter Westgate CEO David Siegel who threatened his employees with closure if Obama were to be re-elected. Someone made a random comment about a perceived welfare queen standing in line at the grocery store with six kids supposedly holding IPods. A discussion about benefits and fraud started up. As FrenchTwist40, Spencer challenged the other commenter to “try living on it.” Suddenly, he began to speak very personally:

Look, I have a disabling illness. It won’t last forever, but for the moment I’m stuck with it. And the thing about it is, it’s not constantly disabling. Some days, I’m fine, and get around with no problem. Other days, I’m curled in 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.

And the biggest problem in terms of getting work? I don’t know in advance which day is gonna be which. Which makes me an undependable employee. If you saw me on one of the good days, you’d assume I was gaming the system. Why? Because you don’t know what else is going on. And you also don’t know about the choices between things like food and medicine that I’m making. And whenever some zero-tolerance wise-ass decides I need to recertify, that means I have to haul OUT of bed, no matter how sick I am, and go sit for hours in a waiting room, or run all over town trying to collect various papers from doctors, etc., which yes, is often mind-bogglingly awful if, say, it’s a nausea day. So your zero-tolerance for fraud policy? It’s actually a less-than-zero tolerance, because some people simply aren’t going to be able to get through all that. They won’t be able to pull the bullshit together until they’re forced to, when their benefits get cut off, and by then who knows how many days that means without food, medicine, or what penalties for late rent. So MY point is, mind your own damned business. There’s enough oversight that we know fraud is NOT, despite what you say, terribly rampant. And if you’re busy judging someone else’s haul at the checkout, then guess what? Maybe you need another hobby, but you’ve got too much time on your hands.

And P.S. It’s not just YOUR tax dollars going to fund these programs, any more than it’s MY premium dollars going to pay your medical bills whenever you file an insurance claim. I paid taxes for a lot of years in this town to ensure that programs like this WOULD exist for people who need them. I now need them, and feel not the slightest compunction about using them. Nor do I need some busy-body balefully eyeing my grocery cart trying to decide what I deserve and what I don’t. And if you tried to tell me directly, I would quite rightly tell you to mind your own fucking business.

Which is what I’m telling you now. Mind your own fucking business.

Spencer let his opponent have the last word. But his own final comment on the subject reminds me that the name he chose for his organization—“Medius”—can be traced back to the Latin for “the middle finger.” Spencer had the ability to give it while being intensely intimate and making himself entirely vulnerable to the kindness—or lack thereof—of strangers.

Perhaps our questions can lead us toward greater understanding and inspired action. I’m also reminded of what he said in his outtake clip about the breakthrough protease inhibitors that have saved the lives of millions: “What I learned from that is that miracles are possible. Miracles happen.

May Spencer’s death disturb us enough to do something. Something big, like he did. May we find the courage to restart and support the Medius Institute for Gay Men’s Health—the legacy he intended to leave his community and the world. May we break the silence that isolates people living with HIV/AIDS and cultivates depression, feeding PTSD and its myriad symptoms. May we demand universal health care in this nation so that no one has to choose between food and medicine. May we break the silence that still equals death.

If Medius had received the funding it needed and deserved, Spencer might be alive. May his death haunt us long enough that we learn to understand and solve the riddles that killed him, before they kill us.

Editor’s note: This article has been updated to make certain facts clearer.

Image of Spencer Cox (top) courtesy of Other images courtesy of Facebook with the exception of the Bennington-era photo by Debra Eisenstadt Morgen.

Chivas picChivas Sandage’s first book of poems, Hidden Drive (Antrim House, 2012), places Ada with Eve in Eden and explores same-sex marriage and divorce. Her essays and poems on gay marriage have appeared in Ms. Magazine,The Naugatuck River Review, Upstreet, Same-Sex Marriage: The Moral and Legal Debate (Prometheus Books, ‘04) and are forthcoming in Knockout Magazine. Her work has also appeared in Artful Dodge, Drunken Boat, Evergreen Review, Hampshire Life Magazine, The Hartford Courant, Manthology: Poems on the Male Experience (Univ. of Iowa Press, 2006) and Morning Song: Poems for New Parents (St. Martin’s Press, 2011). Sandage holds an MFA from Vermont College of Fine Arts and a BA from Bennington College. She lives in Connecticut with her wife and daughter and blogs at

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konkrypton January 12, 2013 at 3:41 pm

As someone who has fought HIV/AIDS for going on 25 yrs now, I can understand how someone like Spencer who had "done his bit for king and country" could become tired of fighting. It takes pushing yourself daily to just get through the day, sometimes. And considering I woke this morning from a dream about using, I can imagine someone falling off the wagon when they get tired of fighting.

Lord, I appreciate his response to the spiteful comments about "welfare queens." I, too, am collecting disability, which I continually have to remind my Republican relatives that I worked for and earned, and it's not very much money. In fact, I'm below the federal poverty line. If I didn't have a friend to live with to help with rent, utils, etc. I wouldn't be in very good shape myself.

Whatever Spencer's problems, it's a shame he didn't reach out to someone for help. That, to me, is the biggest tragedy here. He obviously felt he couldn't trust anyone, or that he didn't want someone judging him if he did fall off the wagon. I wish I could have helped.

Chivas_Sandage January 14, 2013 at 1:07 am

Konkrypton, thank you for taking your time to write about these issues & your life. 25 years is…a long time to keep fighting. Yes, I can imagine getting tired. Even giving up. I think that's what happened to my father. He gave up. It took me decades to fathom how & why. But I get it now. I don't think I'd be as strong as Spencer, as strong as you. I have no idea what happened to Spencer. I do hope that asking the questions can somehow contribute to the larger conversation that's been going on for decades. I hear you about the "welfare queen" issue (I'm sure Spencer was pun-aware of that one!). Yes, that's a subject I've lived as well & agree that until you've personally experienced the "lifestyle," it's best not to judge. Lastly, may you thrive.

JustMeJoeyd January 12, 2013 at 6:09 pm

This is a great article that provokes a lot of thought. I believe that the stigma associated with being HIV-positive and it's association with sex they many of us grew up with hiding combines for one helluva mind fuck. My own issues with intimacy and poor self esteem lead me to take more risks in my attempts to find love. It has taken ten years since being diagnosed for me to realize I'm more than the societal labels we attach to ourselves. I still have a long way to go in rebuilding my self esteem and am very grateful to be here to do the work I need to do. I've given up at times, been incredibly self destructive, and been angry with corporate America over the financial incentive to never find a cure for HIV. I can certainly understand how Spencer may have let his guard down just long enough for pneumonia to take hold. I cannot explain why he is gone nor why I am here. Spencer left a legacy that will be remembered and I hope he knows that.

Chivas_Sandage January 14, 2013 at 1:21 am

Thank you, JustMeJoeyd, for your honesty and perspectives on the stigma and on your life. I'm grateful to hear your compassion for Spencer–and your anger with the forces that don't prioritize finding a cure. I hope you have support. I'm glad you're here! I hold your words close.

AngelOfDeathJr January 13, 2013 at 9:43 pm

You may care deeply for Spencer, but Chivas, you have no idea what you are talking about. Spencer did NOT have to make the choice between food and medicine. Spencer had his medication covered by Medicaid and he was also receiving other financial aid from the government, which included food stamps. His friends in New York were looking out for him and he was eating regularly, sometimes luxuriously! What was going on at the end of his life is so much more complicated than what you have extrapolated here. I cannot BELIEVE you used an anonymous comment posted on a website like Gawker as your "research"! Spencer NEVER wanted this comment to track back to him OR HE WOULD HAVE POSTED IT UNDER HIS NAME: SPENCER COX. This is both sad and shameful. Shame on Gawker for outing him and shame on you for failing to fact check. You are obviously a poet, not a journalist. Stick to what you know going forward.

Chivas_Sandage January 14, 2013 at 12:44 am

Thank you for your words, Angel. I respond below… Oh, & by the way, Gawker did not out his alias. Someone else did—on Gawker. I’m sorry if my wording implicated Gawker.

Chivas_Sandage January 14, 2013 at 12:18 am

Angel: No, I’m not a journalist. I’m an essayist & a poet. I chose to not “fact check” Spencer’s words because I believe he’s probably a reliable source regarding his own life. This is not a biography; it’s a brief essay—& an attempt to open a discussion. If Spencer was not telling the truth—then that reveals another truth. The more I learned about Spencer, the more his death haunted me. Asking these questions is not comfortable. In the end, I wanted to give Spencer a voice. I’m sorry that my words—well, Spencer’s words—are so upsetting for you. Yes, I know nothing. I ask a lot of questions. I absolutely respect that his situation & death were deeply complex. But if Spencer, as you say, was on Medicaid & food stamps, that means he might have struggled with limited resources—as he himself described. Perhaps there’s some truth, then, to what he said? Are you saying we shouldn’t ask questions? If we don’t try to understand what killed him, how does that help those who, like Spencer, have lived for decades with AIDS & continue to struggle? Are you saying we should be silent?

markashaw January 14, 2013 at 1:05 pm

Thank you, Chivas, for that beautiful essay on Spencer.

I was at Bennington from 80-83 and during those years I was, quite happily, the public face of homosexuality on campus. The primary reason for my Bennington meltdown in 1983 was, having worked in public health before college, I had a fairly good understanding of what the future held for gay men, including me.

I was talking to a younger gay friend about those years, explaining that every day I had to prepare myself for death – closely examining myself in the shower for anomalies, monitoring each cold or panic-induced night sweats. My younger friend observed that I wasn't preparing myself for death, but preparing myself for diagnosis. I’m convinced that every gay man who survived that initial massacre is damaged in ways no one acknowledges.

The cure, for me, was ACT UP (in Baltimore). I was able to channel that rage & fear, with beautiful people I loved who were experiencing the same rage & fear. We were, after 3 years, able to transform how AIDS was prevented, diagnosed, funded & treated. Then, it was over.

My problem with David France’s film is this – it’s all there is. It’s as if it never happened. In fact, it’s as if 1980-1990 never happened.

I didn't know Spencer, but I understand, and grieve, profoundly for another of us lost.
So, thank you for honoring him, and all of us who survived.

Chivas_Sandage January 18, 2013 at 10:13 am

Mark, I struggle to imagine living with that level of daily consciousness about one's own mortality—especially starting at such a young age. After 2 relatively "mild" cancer scares, I know how that sharp awareness instantly realigned my life & perspective & lurked behind every thought. To have that last for decades? I hold your words & your experience close. Thank you for writing about the challenges as well as the substantial support you found in ACT UP. I hope that the powerful & riveting documentary How to Survive a Plague–followed by the tragic loss of Spencer–will wake us up to the fact that survivors do indeed need the profound support & activism that Spencer tried to offer when he started Medius.

jcmiami January 15, 2013 at 10:31 pm

in my late 40's and was diagnosed with AIDS 7 years ago. Luckily for me, I'm able to work, have insurance and have a semi-regular life. Only my intimate friends and family know of condition and – so far so good – my health has remained good almost all due to the anti-viral meds I take. Now that I'm living with this disease and I can honestly say HIV has become a "silent disease." No one talks about it anymore, it's thrown into the back-burner like it never happened – BUT – infection rates are still increasing among younger gay men. Only when I see my MD do I see other poz patients but they don't even make eye contact. This leads me to why I think HIV has become an "emotional" disease. Funds are being cut from programs which had support groups for poz people. There is no "longer a cause." The "gay community" is really not even a community anymore, its like almost all society now – "each man to fend for themselves." HIV discrimination is also very alive and well – and VERY rampant among gay men which should be the opposite. You do feel isolated, you feel alone, you feel "dirty" sometimes, you get depressed – in fact – I believe depression is probably the #1 reason why there are high suicide rates, high risk behaviors/self destructive behaviors, substance abuse among HIV poz people. Believe me, I have suffer from a lifetime of clinical depression and the emotional "consequences" of HIV stigma have more than once triggered depressive episodes. I didn't know Spencer Cox but I can almost bet on my life – behind his death lurked depression – a consequence of what I mentioned earlier

Chivas_Sandage January 18, 2013 at 10:36 am

Thank you for describing your life, the stigma & discrimination you witness, & the overwhelming force that is PTSD-related depression. I'm glad to hear you're in good health, can work & have insurance! And it sounds very lonely. I hope that you can find community & support. Yes, I think ACT UPs "new" battle cry should be "SILENCE STILL = DEATH"

lexy924 January 17, 2013 at 4:56 pm

Thanks for writing this and honoring Spencer in this way. I want to remember my friend from Bennington as the advocate and relentless fighter that he was rather than enduring unnecessary speculation about the days leading up to his death. I am proud to have known Spencer. Your essay reflects that same sentiment. Thank you.

Chivas_Sandage January 18, 2013 at 10:47 am

Lexy, thank you. Your perspective & support means so much to me. With gratitude, C.

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