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. (The word "patient" signifies 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. They were hungry for information about how activists became so successful in turning around the course of AIDS. They wanted to know how they did it -- how we got to the place we are today and what our strategies were. They wanted to know how we dealt with an apathetic government 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.
The 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 first time. The 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. The 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. There 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 passed in those days to other passionate and desperate advocates who were simply fighting 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. The 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. These 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. There 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 suffering from life-threatening conditions hold so much power and control over those who are fighting for their lives?
But all in all, the message was clear to me over the course of a few days. This gathering of a group of empowered "patients" was not about how effective empowered people could be to change the drug development process, but was more about the collective power of human bonding to end human suffering.
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 difference for the sake of their own lives and survival.