An AIDS activist participates in a clinical trial for the cure.

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.

I remember when we asked if gene therapy would ever be successful for HIV. But that’s what we’ll find out in this and other studies moving forward. For me, I may be able to increase my lagging CD4 count possibly for six months to a year and maybe more, until there is another strategy. This has been my strategy for survival, one new protocol at a time, staying ahead of the game, buying time.

We have been taught to believe that since HIV integrates with human DNA that it becomes incorporated in our genetic material forever. But there is now more hope that ridding the body of HIV, or at least reaching a stage of drug-free remission, may be entirely possible. 

In the study I have enrolled in, my own cells are drawn from my veins and then introduced in the laboratory to tiny molecular scissors called zinc finger nucleases that slice the gene for CCR5, a co-receptor important for HIV to grab onto, from my own CD4 cells. The changed cells are then expanded by the billions and infused back into my body with hopefully only mild flu-like symptoms the day of the infusion. Of course the long-term effects are unknown, as they were with AZT.

I have been waiting for this moment for many years before we even knew there might be a possibility for a technology that could lead to what is known as a functional cure. It is risky, but I don’t have many options that would increase my t-cells. The hope is that the CD4 cells will become resistant to HIV during their life span and my healthy CD4 cell numbers will increase until the infected cells die off. It may lead to the possibility that I can stop HIV drugs…all of these hopes still theoretical.

So, as I look back on all the successes and failures I realize that this experiment I am undertaking may also fail, but scientists will learn from the information and take it to the next step, just like all other research. But this time the information may lead to the end of this horrific pandemic that has invaded our world. And I will live on to sign up for the next research trial and continue to fight for the cure that we all need.