By Kambiz Shekdar, Ph.D.
Why do we say “I’m HIV-positive” or “I’m POZ,” but not “I’m gonorrhea-positive,” or more affectionately, I’m GONO-POZ?” Since this issue of my monthly column about the twists and turns on the path to finding a cure for AIDS comes out weeks before Valentine’s Day, I thought I’d write about some of the ways in which we think and speak differently about AIDS compared to other sexually transmitted diseases.
Perhaps when there is hope of beating a condition or disease we refer to it as something we have—as in, I have pancreatic cancer, I have a bad hip, or I have gonorrhea. On the other hand, when we believe we must be resigned to live with it forever, maybe that’s when we may, instead, self-identify with it as a way of owning it and finding agency. I am diabetic, I am bipolar, I am hypertensive.
Some gay men even speak about disclosing their HIV status as “a second coming out,” as if having HIV is as much a part of their identity as being gay itself. At the height of the AIDS epidemic, when few had hope of curing HIV/AIDS, owning the deadly disease may have been a helpful coping mechanism. After all, how else could one grapple with an ugly virus that would insist on running through one’s veins until it killed them despite any and all their efforts?
Internalizing and labeling ourselves with a disease can backfire. Consider the following (invalid) proclamation from some long-time AIDS activists just as the first hints of a possible cure started to emerge: “We now have the means to end the global and U.S. HIV epidemics, even without a vaccine or a cure.” A comment by Dr. James Hudspeth, a researcher who studies the science of hearing at The Rockefeller University, may shed some light on how some of the same people who once charged the streets in a fight for their lives could put down their arms. After a lecture about his work, Dr. Hudspeth remarked that it was the deaf community who rose up in opposition when a cure for certain kinds of deafness was first in the offing. A cure threatened their sense of community and identity. Somewhat similarly, when Asperger’s Syndrome was first included in the broader diagnosis of Autism Spectrum Disorder it was “Aspies” who protested, angered at the loss of their sense of self-identity.
Does anyone remember when George W. Bush stood in front of the “Mission Accomplished” banner during the early days of the Gulf War? Despite our heavy arsenal of treatment and prevention drugs, we are far from winning the fight against AIDS. Yet in light of the prophylactic use of AIDS medications like TruvadaÒ for PrEP, the thinking in some corners goes like this: “If you do happen to contract HIV while taking PrEP (chances are you won’t), you’ll potentially go from taking one pill a day to taking one pill a day,” or so says Grant Roth, an HIV peer counselor, ending his statement with an emoji shrug, as if to underscore the banality of it all.
This is not the time to become cavalier. An estimated 37 million individuals are currently living with HIV/AIDS worldwide. There exist two individuals who have recently been cured of AIDS. Using biotechnology originating from The Rockefeller University, Research Foundation to Cure AIDS (RFTCA) intends to develop a broadly-applicable cure for all those in need based on the science underlying the first two reported cures. Everyone can help by extracting HIV/AIDS from our psyches by choosing to say “I have HIV,” not “I’m POZ.” With a cure, HIV/AIDS may one day be serious, but temporary; and in at least that way, no different from gonorrhea.
Kambiz Shekdar, Ph.D. is a biologist, a biotech inventor, a gay man, and the president of Research Foundation to Cure AIDS (RFTCA). Visit FreeFromAIDS.org to help accelerate a cure for AIDS. Contact firstname.lastname@example.org to inquire about joining RFTCA’s founders’ circle.