Time for 30 Years
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.
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.
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
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.
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
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.
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
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.
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.
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
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.
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
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.
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.
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
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.
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.
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.
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.
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.
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.