Last month I attended a summit about raising HIV/AIDS awareness in the gay community. It was a spirited discussion, as we all sought to determine where we might best invest our efforts to have the most impact.
Much has changed in this world since I first tested HIV positive in 1992. Today’s extraordinary treatment options have far fewer side effects and less toxicity than when I was on AZT back in the early days of the epidemic. Today, more HIV-positive people are living longer than ever before due to treatment. For many of them, death is more likely related to smoking, heart health or a cause other than the virus itself. Today we know that early treatment is not only critical to extending and improving the quality of life of people living with HIV, but can reduce the likelihood that they will transmit the virus to their sexual partners by 96 percent!
Yet for all that change, some things remain incredibly the same. Our greatest unchanged reality continues to be stigma. Today, while CDC estimates over 1.1 million Americans living with HIV, there are still far too few warriors who are out with their status. Most keep it close to their chest, fearing that disclosure may result in rejection, discrimination, a lifetime of loneliness, or even prosecution.
We’ve tried to slice and dice awareness of this disease, looking at communities one-by-one. Zeroing in on the disproportionate impact of HIV among men who have sex with men, among African Americans, among youth, among those in the the U.S. South, and among so many other communities.
We have created National Black HIV/AIDS Awareness Day (Feb. 7), National Women and Girls HIV/AIDS Awareness Day (March 10), National Native HIV/AIDS Awareness Day (March 20), National Asian & Pacific Islander HIV/AIDS Awareness Day (May 19), Caribbean American HIV/AIDS Awareness Day (June 8), National HIV/AIDS and Aging Awareness Day (Sept. 18), National Gay Men’s HIV/AIDS Awareness Day (Sept. 27), National Latino AIDS Awareness Day (Oct. 15), and the mother of all awareness days, World AIDS Day (Dec. 1).
Yet much of what all these days ask of communities is to simply raise their awareness and concern about AIDS, and while important, is that enough? They allow HIV/AIDS to remain an abstract thought for the vast majority of communities, and leave other communities wondering when their day will come.
A national awareness day focusing on gay men and HIV, for instance, will do far less to bring home the realities and awareness of HIV among gay men than personal discussions with my gay friends about my life as an HIV-positive gay man. The same, I think, would apply to my life partner. His mom will be far less moved by a national day focused on blacks and HIV than her son’s own coming out with his status.
What we really need is a National HIV Coming Out Day.
We need a day where HIV-positive individuals -- straight or gay, black or white, old or young -- step forward about their status. We need a day that can really raise awareness of HIV, put a face to the virus, and help move the dial in getting others to decide to be tested or engaged in care.
We have the tools to end the epidemic. But stigma remains a barrier to our success. It is stigma that keeps too many from wanting to know their status, to face rejection, discrimination, or possible prosecution. It is stigma that keeps many more in fear of disclosing their status, and thus avoiding getting the HIV care they need.
Yes. We need a National HIV Coming Out Day -- to create a movement of people living with HIV that changes the national discourse.
It will take time. And the unfortunate reality for some will be that it’s just not possible right now. It may jeopardize their jobs, their relationships and so much more. But where we can, we must. As more and more step over that hurdle, come out with their status, and talk with others about what it means to be living with HIV, the more we can shift those possibilities.
We need a National HIV Coming Out Day. A day where we face the reality that America is living with HIV, that our friends and family need to be tested, that those infected can live better through treatment, and that we can get to an AIDS-free generation.