History marks the beginning of the American AIDS epidemic as June 5, 1981 in Los Angeles, when a case of five previously healthy gay men were reported to have pneumocystis pneumonia (PCP). Healthy people do not contract a disease like PCP, which had been largely confined until then to patients on medication to suppress their immune systems for an organ transplant or cancer patients on chemotherapy.

Though not stated explicitly, the language of the report, by omitting race, implied that the five young active homosexuals were White, which they were. But there were two more documented cases, not mentioned in the notice, and these sixth and seventh cases were Black — one of them a gay African-American, the other a heterosexual Haitian.

Dr. Michael Gottlieb, the lead author of the report said he is often asked why he didn’t include in that first report the documented case of the gay African-American man.

“Until recently, I wouldn’t have thought it mattered,” said Gottlieb, “But in retrospect, I think it might’ve made a difference among gay Black men.”

Thanks to the success of lifesaving antiretroviral medication pioneered 20 years ago and years of research and education, most HIV-positive people today can lead long, healthy lives. In fact, over the past several years, public-health officials have championed the idea that an AIDS-free generation could be within reach — even without a vaccine. But unknown to most Americans, HIV is still ravaging the Black male gay community.

Last year, the Centers for Disease Control and Prevention predicted that if current rates continue, one in two African-American gay and bisexual men will be infected with the virus. That compares with a lifetime risk of one in 99 for all Americans and one in 11 for White gay and bisexual men.

To offer more perspective: Swaziland, a tiny African nation, has the world’s highest rate of HIV., at 28.8% of the population. If gay and bisexual African-American men made up a country, its rate would surpass that of this impoverished African nation — and all other nations.

The crisis is most acute in Southern states, which hold 37% of the country’s population and as of 2014 accounted for 54% of all new HIV diagnoses. The South is also home to 21 of the 25 metropolitan areas with the highest HIV prevalence among gay and bisexual men. Jackson, the capital of Mississippi, has the nation’s highest rate — 40% — of gay and bisexual men living with HIV, followed by Columbia, SC; El Paso, TX; Augusta, GA; and Baton Rouge, LA.

The South also has the highest numbers of people living with HIV who don’t know they have been infected, which means they are not engaged in lifesaving treatment and care — and are at risk of infecting others. An unconscionable number of them are dying: In 2014, according to a new analysis from Duke University, 2,952 people in the Deep South (Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee and Texas) died with HIV as an underlying cause, with the highest death rates in Mississippi and Louisiana. Among Black men in this region, the HIV-related death rate was seven times as high as that of the United States population at large.

Including gay Black men in the initial literature and understanding of the origins of the disease and its treatment, said Gottlieb, could have meant earlier outreach, more of a voice and a standing for Black gays in HIV/AIDS advocacy organizations, and access to the cultural and financial power of the LGBTQ community that would rise up to demand government action. But 35 years of neglect, compounded by poverty and inadequate local health care infrastructure, have left too many Black gay and bisexual men falling through a series of safety nets. 

This has been true of even the most recent advances. In 2010, the Obama administration unveiled the first National HIV/AIDS Strategy, an ambitious plan that prioritized government research and resources to so-called key populations, including Black men and women, gay and bisexual men, transgender women and people living in the South. With a mandate to “follow the epidemic,” several pharmaceutical companies and philanthropic organizations also started projects to help gay Black men, particularly in the Southern states. That same year, the Affordable Care Act and later the expansion of Medicaid in more than half of the country’s states linked significantly more HIV-positive Americans to lifesaving treatment and care.

Prevention Drug Not Getting to Blacks

In 2011, HPTN 052, a study of 1,763 couples in 13 cities on four continents funded by the National Institute of Allergy and Infectious Diseases, found that people infected with HIV are far less likely to infect their sexual partners when put on treatment immediately instead of waiting until their immune systems begin to fall apart. This “test and treat” strategy also significantly reduces the risk of illness and death. The data was so persuasive that the federal government began pushing new HIV/AIDS treatment guidelines to health care providers the following year. And in 2012, the Food and Drug Administration approved the preventive use of Truvada, in the form of a daily pill to be taken as pre-exposure prophylaxis (commonly called PrEP). It has been found to be up to 99% effective in preventing people who have not been infected with HIV from contracting the virus, based on the results of two large clinical trials.

An estimated 80,000 patients have filled prescriptions for PrEP over the past four years, but only a small percentage of Black people use PrEP to prevent contracting the virus, accounting for only 10% of prescriptions; the vast majority of users are White. Many Black gay and bisexual men either can’t afford PrEP or don’t know about it — they may not see a doctor regularly at all, and many medical providers haven’t even heard of PrEP. A CDC report in February noted that only 48% of Black gay and bisexual men effectively suppress the virus with consistent medication, and the numbers are even lower for these men in their late teens and 20s.

Turning things around would mean expanding testing and providing affordable treatment for those who are positive — to stop sickness and dying and also to block transmission of the virus. It would also require getting information and medication, including PrEP, to those most at risk. Even more challenging would be reducing the stigma, discrimination and shame that drive gay and bisexual men to hide their sexuality and avoid the health care system — and making sure providers have adequate resources and understand how to care for HIV patients.

Trump Cutting Back on HIV Funding

Experts in the field have grown increasingly worried about the new administration’s commitment to fighting the disease. Soon after President Trump’s inauguration, the web page of the Office of National AIDS Policy, the architect of the National HIV/AIDS Strategy, was disabled on the White House website. The president’s proposed budget includes a $186 million cut in the CDC’s funding for HIV/AIDS prevention, testing and support services. The congressional fight over the repeal of the Affordable Care Act, and the president’s declarations that “Obamacare is dead,” have conjured a disastrous return to even more alarming conditions, like waiting lists for medication.

“The key to ending the AIDS epidemic requires people to have either therapeutic or preventive treatments, so repealing the ACA means that any momentum we have is dead on arrival,” said Phill Wilson, chief executive and president of the Black AIDS Institute, a Los Angeles-based nonprofit. “For the most vulnerable, do we end up back in a time when people had only emergency care or no care and were literally dying on the streets? We don’t know yet, but we have to think about it.”

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