At the risk of being dismissed for wallowing in ‘AIDS nostalgia,’ I want to explain why I’m participating in this year’s AIDS Walk Boston, a good 35 years after the first AIDS cases were discovered.
In the spring of 1986, I found myself in the intensive care unit at Tufts Medical Center. I was the only person visiting a dear friend who just five days prior had been diagnosed with pneumocystis pneumonia. At the time, this type of pneumonia was known as a difficult to treat opportunistic infection. It was also an indicator that my friend had AIDS. I listened to the respirator that helped him breath, and watched helplessly as his life ebbed away. I had no idea that this was not to be just one heartbreaking loss, but rather the beginning of a period of intense grief that would last for years, as countless of my friends died of the disease.
In those very early days, there was little outreach being done about AIDS in the Black community. In fact, it was hard to find any information at all. But then I met Larry Kessler, who had founded AIDS Action. I got involved as a volunteer, specifically to get the word out into communities of color that AIDS was something that as a community we needed to pay attention to.
I met other Black gay men at AIDS Action and we formed a support group specifically for Black gay men. It was so desperately needed. Due to the stigma of AIDS, many of my friends’ families were unwilling to admit what was happening to their loved ones when they got sick. After they died, family members often refused to acknowledge the cause. My friends and I quickly learned to speak in code about “cancer funerals” when we were with our extended families, in our churches, or out in the community.
When we were in more inclusive and safer gay spaces, such as local gay bars and clubs, we found that there too, few people wanted to talk about AIDS. Although the intersection of race and AIDS was acknowledged at AIDS Action, it was obvious that Black gay men were more likely to get sick and die faster than White gay men. We needed to give each other support and help find ways to get around some of the race-based barriers we faced in getting information, much less access to healthcare.
Three decades later, that greater vulnerability to HIV among Black gay men still exists. Last year, the U.S. Centers for Disease Control reported great news: rates of new HIV diagnoses had dropped 19 percent between 2005 and 2014. But new diagnoses were up among Black gay men by 22 percent, and had increased an astounding 87 percent for young Black gay men aged 13-24 years old.
The offensive trope that Black gay men are more likely to contract HIV because they take greater sexual risks has been thoroughly debunked by careful study. The simple truth is that racism has played, and continues to play, a significant role in the lives of Black gay men making them more vulnerable to HIV. Historically, as a community, Black gay men have had much lower rates of health insurance coverage, and when the coverage was there, the role that implicit bias plays in some parts of the health care delivery system resulted in poorer health outcomes for people of color generally.
Practically speaking, this means that Black gay men living with HIV are less likely to have suppressed the virus with medication and are more likely to transmit HIV to a sexual partner. Which explains the higher rates of HIV among Black gay men of color.
The work of raising awareness, and eliminating barriers to healthcare and medicine is not over. Getting Black queer men tested for HIV and treated with culturally sensitive and informed medical interventions is critical to lowering rates of HIV. It’s also important to encourage sexually active Black gay men who do not have HIV to ask their doctor about PrEP (pre-exposure prophylaxis), an anti-retroviral medication that, if taken daily, makes it nearly impossible to acquire HIV. Just as important, although more difficult to achieve, is reducing racism and homophobia, both explicit and implicit, among health care providers and support staff. A 2015 study published in the American Journal of Public Health found that nearly a third (29 percent) of Black gay and bisexual men said that they had encountered racist or homophobic behavior in healthcare settings. As a result, they were much less likely to seek out preventive care, such as HIV testing and treatment, on a timely basis.
People who know better do better. We owe it to those who didn’t make it, to do what we can now to end this disease, once and for all.
Gary Bailey, DHL, MSW, ACSW is Professor of Practice at Simmons College School of Social Work and at the Simmons School of Nursing and Health Sciences. He is a member of the AIDS Action Committee’s Advisory Council and a past Board chair of the AIDS Action Committee.