On HIV and AIDS, Our Community is Not Paying Enough Attention
On a summer day when I was around ten years old, my aunt and uncle walked into our house and plunked down a dark grey binder with four capital letters in white: “GMHC.” In small lettering below, it spelled out the acronym: “Gay Men’s Health Crisis.” I don’t remember what the binder contained, but I do remember how I felt when I read the cover. Scared. Angry. Hopeful. Grateful. I knew immediately that it had to do with AIDS, I hated that I didn’t understand what was going on, and I was angry that it didn’t seem like the adults did either. At the same time, I was happy that we were admitting it was a crisis, and that there was at least one whole binder full of everyone’s best guess at how to approach it.
When I was a kid and a teenager, HIV and AIDS felt urgent and omnipresent. For gay and bisexual men, transgender women, and IV drug users, it almost felt as if you were just waiting for the day when you got your diagnosis. There wasn’t really any other conceivable path. Every time you tested negative, it was like you’d gotten a reprieve. As friends, family, and lovers got sick, we felt devastating sadness, survivor’s guilt, and overwhelming hopelessness.
Today, we observe the 26th World AIDS Day and much of the urgency and hopelessness we felt about HIV/AIDS two and a half decades ago has eased. Progress in HIV treatment means that the life expectancy for people living with HIV is almost the same as for people living without HIV. Studies show that daily PrEP (Pre-Exposure Prophylaxis) use lowers the risk of contracting HIV by up to 92%.
As exciting as these developments are, there’s a significant negative impact connected to the loss of urgency and our community’s resulting failure to maintain the same level of education and advocacy. According to a new study by the Kaiser Family Foundation, gay and bisexual men are now less likely to get tested as often as advised – seven in ten have been tested at some point in their lives (which leaves 30% who have never been tested), but only 30% have been tested in the last year. This isn’t an indicator of irresponsible behavior. Instead, it’s a reflection of systemic failures.
More than 1.2 million people in the United States are currently living with HIV and AIDS—and about 15% of those aren’t aware of their status. In 2011, gay and bisexual men accounted for over half of all new AIDS diagnoses in the U.S., yet more than half of gay and bisexual men say that a doctor has never recommended they get tested for HIV. Six in ten say they rarely or never talk about HIV when they visit their doctor. The numbers for people of color and transgender women are even starker.
At this year’s U.S. Conference on AIDS, I attended a session about how to establish stronger ties between HIV/AIDS organizations and LGBTQ organizations. While the participants recognized the shared history of the movements, it was clear that the two had developed along distinctly different paths. The separation has contributed to backslides we’ve witnessed in testing and new infection rates.
To be clear, I’m ecstatic that there’s reason for hope, and for a decreased sense of anxiety among those at highest risk for transmission of HIV. The fear, incomprehension, and despair we felt in the 80s and 90s was abhorrent. Still, we can’t let complacency translate into a failure to educate our community and ourselves about the continued risk of transmission as well as the current landscape of treatment and prevention.
The Crisis is still a Crisis.
Two decades ago we couldn’t imagine a world free of AIDS. Today, the possibility of a world without new HIV infections feels only slightly outside our reach. I feel an immense amount of privilege knowing that I work for an organization that encourages me to carry on the work of my aunt and uncle and a generation of other advocates. For more on how the National LGBTQ Task Force continues to engage in this fight, as well as a glimpse into her work doing street outreach in the late 80s and early 90s, check out our Deputy Executive Director, Darlene Nipper, speaking with Michael Kaplan of AIDS United here:
I hope you will stand with us as we refocus the movement on this issue, partner with groups like AIDS United, and continue to create the types of change that will have a lasting impact on the fight against HIV/AIDS.
by Meghan Maury, National LGBTQ Task Force Policy Counsel