WELLNESS STARTS WITH AWARENESS - CD8 T cells - The Body

Photo © Russell McGonagle
Life Savers
On the front lines at the FDA
by Matt Sharp
I
was recently honored to retell the history of AIDS activism for
a workshop at the Food and Drug Administration in Rockville,
Maryland. I spoke on a patient representative panel about how
AIDS activists “got in the door” at the FDA, eventually speeding up
HIV drug approval and changing the way drugs become approved
for all diseases. I was on that AIDS battlefront, and I am an FDA
patient representative myself, having sat on the Antiviral and Blood
Product advisory committees—which meet to discuss data on the
latest developments, so my perspective was useful in telling the
story of AIDS activism and the FDA.
It was a most inspiring workshop that reinvigorated my desire,
passion, and commitment for the work I’ve been doing for almost 20
years. Patient advocates representing people living with Alzheimer’s,
breast cancer, lymphoma, Parkinson’s, and many other diseases
attended this 9th FDA Patient Representative Workshop. (Th e
word “patient” signifi es passivity and is troublesome for me; more
on that later.) Some of the reps were survivors, many living for 10
or more years with their disease. Others were parents, brothers or
sisters, husbands or wives of people either still alive or deceased.
I was so moved by the compassion and energy of these advocates.
Th ey were hungry for information about how activists became
so successful in turning around the course of AIDS. Th ey wanted
to know how they did it—how we got to the place we are today and
what our strategies were. Th ey wanted to
know how we dealt with an apathetic gov-
ernment and how we mobilized our community.
I was eager to share the information
and to tell the compelling story of how
far we had come in such a short time with
such a complex disease in such an apathetic
world.
Th e advocates were diverse, but the
majority were women. There were new
advocates and more seasoned ones. Some
had represented their communities on FDA advisory panels for
new drugs, others were meeting each other for the fi rst time. Th e
breast cancer survivors were the most outspoken and were very
knowledgeable. Two members spoke about their own issues with
clinical trial outcomes and surrogate markers, which brought up
memories of similar debates we had in HIV with the use of changes
in CD4 counts to show whether a drug worked or not. Th e interaction
reminded me of ACT UP Golden Gate meetings in the ’90s in
San Francisco where we reserved space for breast cancer activists
on our weekly meeting agendas. We helped to mentor them, we
helped plan and coordinate their demonstrations, and we helped
educate them on the science. Th ere we were, a ramshackle group of
biker-jacketed and Doc Martin boot-wearing gay men and lesbians
mentoring housewives from the suburbs. A very bright torch was
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passed in those days to other passionate and desperate advocates
who were simply fi ghting for their lives. It was beautiful seeing
some of the fruits of our mentoring with the breast cancer advocates
at this FDA meeting.
All through the day I was approached with detailed questions
about AIDS history—how we strategized and mobilized. A sickle
cell anemia advocate asked me how to get a new group of sickle
cell advocates to focus on the issues of their disease—a question I
still hear in the HIV community. Th e patient representatives were
anything but “patient,” but a real force, sponges soaking up the
information, desperate to learn in order to embolden their fellow
survivors. At the same time there was an overwhelming respect for
each other, for human dignity and survival. Th ese were the new
AIDS activists, survivors acting on their own behalf, for their own
situations and their own lives.
Suddenly I felt like more of a veteran than ever before with
a whole new crop of advocates for other diseases. Th ere was an
unspoken understanding among all of us regarding the battles we
face and the challenges we have just to survive. It was a camaraderie
that I haven’t seen before and the power in the room was clear. How
can people who are not suff ering from life-threatening conditions
hold so much power and control over those who are fi ghting for
their lives?
Suddenly I felt like more of a
veteran than ever before with
a whole new crop of advocates
for other diseases.
But all in all, the message was clear to me over the course of
a few days. Th is gathering of a group of empowered “patients” was
not about how eff ective empowered people could be to change the
drug development process, but was more about the collective power
of human bonding to end human suff ering.
Vito Russo, a long-time AIDS activist and ACT UP member
said in 1988, “Remember that one day the AIDS crisis will be over.
And when that day has come and gone there will be people alive
who will know that there was once a terrible disease, and that a
brave group of people stood up and fought and in some cases died
so that others might live and be free.” Substitute other conditions
for AIDS in Vito’s quote and you can attribute the same sentiment
to all patient advocates, who are trying to make a diff erence for the
sake of their own lives and survival. e
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