When HIV first made headlines, there was little consensus among medical professionals and public health officials; many myths were embedded into our psyche and into the persisting narrative for the HIV and AIDS communities. I worked for a local non-profit which provided case management and educational prevention services for people living with HIV or AIDS (PLWHA). The specific program I developed focused on providing education for PLWHA and providing in-home HIV testing for their partners. I also went into communities to provide them with HIV 101 presentations; I went to middle schools, high schools, queer youth organizations, colleges, and inpatient D&A facilities. The amount of misinformation still circulating through society fueled my commitment to ensure folks were receiving correct information. In my experience, misinformation influences negative attitudes toward PLWHA. Those attitudes were difficult to grapple with and even more difficult to change. While I found this frustrating, I also understood the fear and its origin.
The first several years of the epidemic were marked by government silence, medical inaccuracies, and negligence, which left the Reagan administration with bloodstained hands. The community most affected then—and still today—was the gay community. When I read “And the Band Played On” by Randy Shilts, a firsthand account of those years, it blew my mind open, broke my heart, and angered me into action. While PLWHA have benefited from greater medical understanding and magnificent life-extending medications, the social barrier stands firm. It seems that a cure may be discovered before society ever evolves on its treatment towards PLWHA.
Would HIV infection rates still be this high (approximately 50,000/year in the U.S., according to the Center for Disease Control and Prevention) if this disease had initially affected predominately white heterosexual folks of a higher socioeconomic status? I would bet almost anything that, no, the infection rates would be lower. I also believe that Ronald Reagan would have uttered the letters HIV in his speeches sooner than six years into the epidemic if the primary affected demographic had been anyone but gays, sex workers, people of color, injection drug users, and the poor. The level of intentional negligence on behalf of the federal and state governments in the beginning of the epidemic set the tone for how PLWHA have been and are still (mis)treated within society and the justice system.
More to come in my follow-up article on the justice system and the stigmatizing and illogical criminalization of behavior on behalf of PLWHA. I have observed much silence on the matter even from the queer organizations; instead, as previously noted, efforts were focused on achieving same-sex marriage above all else.
Unlike people with cancer, PLWHA are often subject to speculation about how they were infected in order to determine if they are worthy of support, understanding, or pity. That sort of dialogue is invasive, unfair, and robs these individuals of their dignity. The most grueling barrier the HIV and AIDS communities face is not access to medicine, side effects of medicine, or lack of a cure—it is HIV and AIDS being treated like a social disease and a false measure of a person’s character or choices. HIV does not discriminate, and neither should you.
Stay engaged in this discussion, while I prepare a piece which may be challenging and upsetting to many; if a person is HIV-positive or is living with AIDS, should they be legally obligated to disclose their status before sex with a partner?