I should really be dead of AIDS by now, but I’m celebrating my 60th birthday instead.
Twenty-seven years ago, I was counting down my final hours in a rented basement apartment in Washington, D.C., with little hope of surviving the bitterly cold mid-Atlantic winter of 1995. With my last remaining energies, I was quietly preparing to die in all the small ways I had seen friends and lovers do, or fail to do, in the 14 years since the plague began to take us. I formulated my advance medical directives in case I lost my ability to communicate my needs. Though my possessions were few after years of impoverishing illness, I wrote a will. I consoled my conscience, making overdue confessions and apologies to family, friends, lovers, comrades, and an enemy or two. I discussed the disposition of my bodily remains with my family, preparing them for what was sure to come, and making my wishes known. To hasten my exit should my discomfort grow unbearable, I secreted away a sufficient cache of palliative drugs. I surrounded myself with a strong network of care, including the heroic Dr. Douglas Ward, with his attentive staff, and my ever-true best friend, J.B., both within a half-block walk or a phone call, seemingly night and day. And most importantly, but with admittedly greater difficulty, I accepted the foreseeable, inevitable terminus, and resigned myself to death.
The careful reader might have noted, however, that I specified I had little hope of survival, which, as the truly desperate know well, is an entire universe away from a world of no hope.
So, while I did all in my power to be ready for death when it called, I also did everything in my power to bar the door. Because my lab results had not revealed a single diagnostically measurable T-4 cell in more than a year, I pursued, with Dr. Ward’s expert guidance, an aggressive regimen of prophylaxis treatments meant to prevent potentially fatal opportunistic infections that could take advantage of my ravaged immune system. Because the drugs themselves caused a whole array of side effects and symptoms, and because the biggest immediate threat to my life was AIDS Wasting Syndrome, I smoked illegally obtained cannabis to calm nausea, enhance appetite, relieve pain, and ease fears. I dosed oral morphine at 120 milligrams per day to dramatically slow my alimentary system, and I laced my tea with opium tincture when I required yet more relief. Because I was allergic to the go-to prevention for pneumocystis pneumonia, I inhaled what seemed like gallons of aerosolized pentamidine. Because Kaposi’s sarcoma, with its tell-tale purple lesions that had become the scarlet letter of AIDS, was spreading across my forehead, buttocks, back, and legs, I injected a sickening dose of interferon for more than a year, and submitted to a series of energy-draining radiation sessions. Because I suffered a hitherto untreatable and ubiquitous one-cell parasite, harmless to those with healthy immune responses but ultimately fatal to those without, I tried experimental and off-label treatments, including, with special permission from the Food and Drug Administration (FDA), the strictly controlled leprosy drug, thalidomide. I did all of this, going further to avoid death than I had ever believed I would have the strength to go, because of this one little hope.
In some ways, the story of the cause of this little hope parallels the story of my own illness. In 1987, as I was being discharged from the U.S. Navy for homosexuality and learning I had contracted HIV, Merck pharmaceuticals was gearing up a new research project at a dedicated facility in West Point, Pennsylvania, looking at the protease enzyme, a key component of HIV replication in human cells. By inhibiting the protease, Dr. Irvin Sigal hoped to interrupt the replication process to combat HIV in a way that existing drugs like AZT could not. Over the next eight years, in spite of the death of Dr. Sigal in the crash of Pan Am Flight 103 over Lockerbie, Scotland, Merck led the way in the development of this key component of what would become the first effective combination therapies for HIV in the late 1990s.
I had first read about protease inhibitors in a brief note John James reported in AIDS Treatment News at the end of 1990, but they remained a mystery until rumors of their efficacy began to bubble up from the limited human trials in 1993. In 1994, as I cared for a dying friend, stories of miracle-like recoveries joined the scuttlebutt. Protease inhibitors seemed to work; Hoffman-LaRoche and Abbot began developing their own versions, trying to catch up with Merck.
By 1995, as final stage AIDS closed in around me, activists had seen enough. They pushed for expanded compassionate access — some way to provide these new promising drugs to patients like me, patients too ill to either participate in the FDA trials or wait until the drugs were approved. Merck balked at first, claiming the supply was too limited; the trial subjects needed every milligram Merck could manufacture, they said, and doing anything that might undermine the approval process could imperil more people with AIDS. Only after activists hired outside experts to show Merck how and where to minimize product loss during its manufacture did Merck finally agree to a limited compassionate access program for the very ill. The other two drugmakers soon followed, announcing similarly limited programs. Of the tens of thousands of dying people with AIDS who needed protease inhibitors, these programs would together supply fewer than 5,000. To overcome the problem of how to fairly distribute such limited supplies among so many, the drugmakers announced, in the summer of 1995, that they would choose the lucky few through computer-randomized selection processes. The media dubbed these processes the “lotteries.”
I still have in my archives the letter I received from Merck in August, confirming that my application to the Crixivan Program for People with Advanced HIV Disease had been accepted. “Because there is a very small supply of the drug,” the letter explained, “only 1,100 people were randomly selected to be in the study. All people that registered for the program were put in a random order. The first 1,100 people were selected … Everyone else was given a waiting list number.” My waiting list number was 9870. In other words, everyone already enrolled in the study would have to die or discontinue the study for some other reason, along with another 9,869 study applicants, before I would have a chance of receiving Crixivan through the lottery. As the summer lurched into fall, it was clear that my number had not come up in the Hoffman-LaRoche or Abbot lotteries either.
With the full onslaught of winter, my hopes began to dim, but I never gave up. There was talk of accelerated approval of Crixivan, controversy over the low dosing of Hoffman-LaRoche’s Saquinavir, and questions whether Abbot, not launching its compassionate access program for Norvir until January 1996, could ever catch up with its competitors. Then, on my 33rd birthday, as I had nearly surrendered that last little hope, Dr. Ward telephoned to tell me he had received a supply of compassionate access Saquinivir for me. I started it immediately, at higher than the earlier, recommended, but controversial dose, along with two other HIV drugs I was already taking. Within weeks, long before the accelerated approval for Crixivan was finalized in March, I rose from my bed like Lazarus.
My unlikely survival is only one small footnote in the yet largely untold story of how scientists, activists, patients and, in the end, even the government came together to change the course of the AIDS epidemic. The last months of 1996 brought an utter transformation of the disease that is now hard to fully appreciate. While it was not the “end of AIDS,” as some were criticized for then claiming, it was nonetheless the end of hopelessness. Sadly, to this very day, poor people with HIV, people of color with HIV, incarcerated people with HIV, and otherwise marginalized people with HIV often lack access to education, medication, and care. This tragic truth remains a challenge to us all, but not even this inexcusable failure can overshadow the triumph represented by the development of protease inhibitors, the genius and dedication embodied by those who made it possible, and the determination and compassion of those still working to address the lingering inequities in HIV treatment. The importance of this turning point in AIDS history and, by extension, the importance of this turning point in queer history can hardly be overstated. The liberated LGBT world we enjoy today, where young queer kind feels free to eschew the closet and live openly, rightly demanding an equal part in all things, was forged in the crucible of the AIDS epidemic, and rose implacably from its ashes. It is a world I could barely imagine in 1995, when I did not believe I would live to celebrate my 40th birthday, never mind my 60th.
For all the difficulties I face as an aging, long-term AIDS survivor, I remain grateful for my 11-hour reprieve, and I suspect I’m not alone. Although I’ve never met any of the other survivors who were rescued from near-death by the 1995 lotteries, I nonetheless sense we are peers, sharing a special kinship with good fortune, with all those who made the lotteries possible, and with each other. I’ve always wanted to hear their stories. Moreover, in a world again wracked by pandemic, I believe their stories of unlikely survival need to be heard. Arguably, a complete and honest accounting of the AIDS epidemic and its crucial turning points also requires their stories.
To these ends, independent queer filmmaker Carly McCarthy is following me on my search for other survivors who participated in the 1995 lotteries, as well as activists, scientists, care providers, and others with first-hand accounts of the lotteries. If you or someone you remember participating in the lotteries in any way, I urge you to share your story with us. With your help, and the support of the community, we can together document this rarely told episode in AIDS and queer history.