It seems like a long time, about a half of my life, that I’ve lived with HIV. Looking back on the days when HIV was not even named yet I can hardly believe I have survived this long. My struggle for survival has been rocky yet I’m lucky to be alive despite the toll on my battered immune system by a devious virus. But I’ve also been tenacious and resilient in trying drug after drug and enrolling in many risky clinical trials, always looking forward to the next treatment, making it to a ripe old age of 54.
Almost from day one I read everything there was about this disease. I ordered fact sheets from Project Inform where I am now on staff, leading advocacy efforts to find a cure. I taught myself, as many of my comrades did, to learn all there was to learn about HIV and the immune system it attacked. As a member of ACT UP I was arrested in civil disobedience actions, fighting for everything from stigma and discrimination to NIH funding and FDA inaction. Things have quieted down due to the success of the very drugs many people tested in those clinical trials. But I recognize that a life of antiretroviral medications just won’t cut it, for me and for the millions of HIV+ people, especially when there is now a concentrated effort to find a cure. I feel like we deserve an end to this fight.
Today, almost 22 years after my diagnosis I am in an early phase clinical research study to test a gene therapy concept that may lead to more answers towards a cure.