Buying Time for 30 Years

SUMMARY On the 30th anniversary of the first report of AIDS, long-time activist Matt Sharp reflects on his fight to survive and thrive with HIV.

By Matt Sharp

Progress is marked in various ways, and sometimes it is difficult to recognize, especially if it takes 30 years and involves a sexually transmitted infectious virus. This is a common perspective among many people today who cannot imagine what it was like when AIDS tore through the gay community in the early '80s and '90s. They were unaware either because they were not around or were not even born yet.

Imagine for a moment the spread of an unknown plague killing young, healthy gay men in the prime of their lives. All before cell phones and the Internet, red ribbons, antiretroviral medications, and the new research into an HIV cure. The progress we have seen is real, yet it can be surreal for people like myself who lived through the epidemic of our time.

My own perspective living with HIV these past 30 years is unique, not only because I am still alive and thriving at 54 years old, but also because I was part of a community of incredible activists who -- along with major scientific advances and some luck -- were responsible for the progress we see in treating HIV/AIDS today. I have been very active in my own survival process, which has involved taking many risks.

Having recently spent time in Los Angeles, I was reminded of my early adult years there -- coming out in 1981, the first days of the epidemic. I remember my own "seroconversion syndrome" one chilly autumn week when I was in bed with what I thought was a bad flu. At the time there was no rapid HIV tests or counselors, no flashy ad campaigns urging safe sex. But I recovered from that short illness unaware that I had become infected with the ticking time bomb of a virus not yet identified as HIV.

The first time I heard about HIV was in an alarming essay written by Larry Kramer, first published in the New York Native in 1982, entitled "1,112 and Counting," referring to the death toll at that point. The essay was a community call to action. Shortly thereafter there was an incredible mobilization in the gay community, including professionals and lay people, artists and civil libertarians, who came together to do something about this new plague.

ACT UP (the AIDS Coalition to Unleash Power) was formed, and within a short amount of time a "good cop/bad cop" civil disobedience and diplomacy strategy was employed to counter AIDS stigma and fight for treatment. ACT UP maximized savvy media campaigns, civil disobedience, and grassroots HIV treatment education. The group, with chapters across the U.S. and later around the world, literally forced the government and pharmaceutical industry to conduct more research FASTER! Many ACT UP members are still alive today, yet sadly many died tragic deaths before they could take advantage of the treatments they had fought for.

Later I moved to Texas and then to Oklahoma to further pursue my professional ballet career. I didn't find out I was HIV positive until 1988. Even though I had incredible support and the best medical care in Oklahoma City, AZT (Retrovir) was just becoming available and I was not coaxed onto treatment. Because I read everything I could get my hands on about HIV, I knew I needed the most current treatments to stay ahead of the virus that was slowly invading my body, so I decided to move to ground zero, San Francisco.

In 1992 I joined ACT UP/Golden Gate as my friends and lovers were dying. We attended funerals weekly. We stationed buddies on hospital shifts to be with people who had been abandoned by their families, only to watch them succumb to a horrid fate that we knew we ourselves were susceptible to. We held our own guerrilla clinics in private apartments, administering toxic IV drugs like compound Q, desperate for anything that might keep us alive.

Some of us focused on treatment activism. Most of us were completely self-taught, reading and learning about the latest advances in medical journals and finding "creative ways" to attend medical conferences. We held scientific journal clubs on Saturday mornings, inviting young researchers to teach us about HIV pathogenesis and any hopeful advances on the horizon. We spread the word in lay terms to the community at large, urging testing, treatment, and care to all who would listen.

As I lived through that fast moving yet perilous decade, I began to waste away from unknown causes. I had no appetite and couldn't eat. I had constant diarrhea and low-grade fever. My T-cells were dipping into the double digits. As with many of my AIDS activist comrades, I entered several clinical trials of experimental treatments we had learned about and fought for, only to witness slower HIV progression, but progression nonetheless. Knowing I was taking risks by enrolling in trials, I knew I had to do something dramatic, and I reversed the wasting syndrome by participating in the first large study of a new growth hormone product called Serostim.

By the mid-90s people with HIV began using a new class of drugs called protease inhibitors in combination with some of the older treatments. I had managed to stay alive long enough to use these new regimens, now known as highly active antiretroviral therapy (HAART). But because I had built up resistance to most of the available drugs by participating in dozens of clinical trials and expanded access programs, HAART was only minimally effective and I knew I was just buying time.

In the years that followed I entered a highly experimental and invasive thymus transplantation trial, flying across the country to Vermont where I went on toxic transplant drugs and had my abdomen cut open. The only advantage to that study was to show that thymus transplantation could be successful in HIV positive patients. Since I had started the new protease inhibitors, the transplant had no tangible effect.

By the turn of the millennium, AIDS had taken its toll on the gay community, injection drug users, and people of color. Now the pandemic had reached astonishing proportions across the globe. Some 90% of AIDS cases occurred outside of the resource-rich U.S. New drugs were working for those who could access them, yet the disease still spread.

By the time I moved to Chicago in 2000, I had gone on disability but was healthy enough to know I was not at the end of my rope. I tried another promising new treatment known as Fuzeon (enfuvirtide or T-20) that was injected under the skin twice daily. I knew about the drug because treatment activists had been meeting with the company developing it. But the drug was simply not effective enough to change the paradigm, at least for me, and it was the most expensive drug in the AIDS armamentarium.

Dozens of HIV drugs came on the market in just 20 years. The turn-around in the amount death and dying were remarkable in the U.S. and other wealthy countries. Yet less developed countries in Africa, Eastern Europe, and elsewhere were seeing an explosion of AIDS that was deteriorating economies and ending hundreds of thousands of precious lives because of poor health care, stigma, and lack of access to antiretroviral treatment.

Miraculously, I maintained by own health, going back to work in 2004 and staying fit with regular gym workouts. In 2008 I was the second person to receive expanded access to the first drug in a new class called integrase inhibitors, in combination with a new protease inhibitor that I had not yet tried. I had astounding success, bringing my virus levels to undetectable for the first time, but my T-cells remained stubbornly low.

With the new treatments many people with HIV returned to health and work, getting on with their lives. But new complications appeared and the phenomenon of aging began affecting those of us who had been fortunate enough to live to tell the story of AIDS. ACT UP chapters had long been abandoned and the community became unusually apathetic. The epidemic was still raging in the rest of the world, and much of the attention to AIDS went there. Antiretroviral drugs were not reaching everyone who needed them even in the resource-rich U.S., where the epidemic remained flat. Hope for a vaccine began to fade, and mention of the word "cure" was verboten.

I was still buying time looking for something to boost my T-cells despite having had undetectable virus for 4 years. Then came the news of the incredible case of one man from Berlin who was cured of AIDS. He had received a life-saving bone marrow transplant for his leukemia using HIV-resistant donor cells. The result appeared to be a fluke that was ignored by major scientists until a few doctors -- including prominent University of California at San Francisco researcher Stephen Deeks -- and long-time AIDS community leader Marty Delaney brought attention to the case.

Today there is real hope for a cure based on new energy and excitement from a dedicated group of researchers and AIDS treatment activists. We know that there will be significant barriers to total HIV eradication, yet there will most likely be strategies moving towards a functional cure, perhaps enabling people to stop antiretroviral drugs. The process is slow as much is yet to be understood, but after 30 years this is real progress.

I still stay involved in HIV/AIDS after 30 years to help lead the cure effort with some of the same treatment activists I knew from the early days. I recently enrolled in a risky gene therapy protocol mimicking the Berlin patient's success. For me much has not changed in 3 decades except that I can look back and say I am still buying time and will not stop fighting until there is a cure.

6/3/2011