Over the past 20 years, people living with HIV in the United States have seen a drastic improvement in their overall quality of life. But the medical achievements that have made those lives better and created longer life expectancies have not benefited all communities.

In fact, some communities still have higher rates of new cases of HIV, the virus that causes AIDS. This is especially true for Black gay and bisexual men. Black queer men are six times more likely to die as a result of HIV-related complications when compared with queer men of different races.

In addition, in the most recent available data, Black queer men made up 26% of all new cases of HIV in 2019 despite making up less than 3% of the total U.S. population.

Finally, data released in 2016 revealed that if the rates then of new HIV cases persisted, an estimated 1 in 2 Black queer men would acquire HIV in their lifetime.

For comparison, those rates mirror the prevalence of HIV in sub-Saharan Africa in 2003 when the international community began sending help, including then-President George W. Bush, who approved and implemented his Emergency Plan for AIDS Relief program.

To this day, sub-Saharan Africa is still considered the epicenter of the AIDS crisis and accounts for nearly 70% of the world’s HIV infections.

The prevalence of HIV in the Black queer community has been well documented in academic research, including my own, which demonstrates that when patients’ treatment plans include access to health care and other social services, the patients stay healthy longer.

The question of risky behavior

The wide reach of HIV in the Black queer community is not due to members of that community having more sex, or using protection less, or having more partners than queer people of other racial or ethnic backgrounds.

In fact, long-standing studies have shown that when Black queer men have access to appropriate health care, they use condoms more often, and test themselves for HIV more often, than queer men of other races.

For example, a study conducted in 2018 found that young Black gay men reported lower rates of sexual risk behaviors, fewer sexual partners and more lifetime HIV tests, but still maintained the highest number of new cases.

Studies published in 2012, 2015, 2019 and 2021 have shown that the increase in HIV infections in the Black queer community is not about the number of sexual encounters.

According to those studies, Black queer people have a higher risk of contracting HIV than those others because their communities are more tightly knit – despite behaving more safely than others.

As a result of social stigma and discrimination, Black queer men are more likely to have sexual relationships within their own racial group. Given the already high prevalence of HIV in this group, this concentration increases the likelihood of encountering a partner living with HIV and increases the risk of HIV infection.

A perfect storm of racism and homophobia

Preventive measures such as preexposure prophylaxis, or PrEP, have completely revolutionized the field of HIV treatments.

Available as an injection, a daily pill or on-demand dosage, PrEP is known to be 99% effective in reducing the risk of acquiring HIV when taken as prescribed.

But in order to receive PrEP, for instance, one must first locate a provider who is willing to prescribe the medicine. There are examples of doctors simply refusing to prescribe it out of fear of “increased promisciuty.”

This sentiment is often rooted in racism and homophobia.

Even if one locates a provider, there is also the ever-looming issue of insurance and affordability. A month’s supply of Truvada, one of the two FDA-approved PrEP drugs, is nearly $2,000 without insurance, while a generic version costs $30 to $60 per month.

Though HIV care and PrEP are broadly covered under the Affordable Care Act, that often means only the cost of the prescriptions. Patients are frequently surprised to learn that the lab costs of blood tests and analysis of PrEP are not always covered, nor are additional tests for other medical conditions, such as diabetes or high blood pressure.

This is problematic because in order to stay on PrEP, you must engage in quarterly check-ins and bloodwork.

Lowering the risks

HIV prevalence is highly concentrated in the South, which accounts for over 50% of new HIV cases. The region also has the highest fatality rate for Black queer men.

My research typically uses interviews of Black queer men to better understand how Black gay men experience and face structural barriers such as access to testing and adequate housing.

Most men I interview are living with HIV and offer insights on their lived experiences and professional expertise with great vulnerability and power.

For example, Travis – a pseudonym – is from Little Rock, Arkansas, and is living with HIV. “If I’m worried about where I’m going to sleep or how I’m going to afford medicine, I don’t care about getting tested,” he explained. “I am not gonna come to my appointment to get poked with needles.”

Research shows Travis is not an outlier.

Issues such as housing, employment, transportation and concerns about costs of health care are major obstacles in staying healthy.

Another man I interviewed lives in Los Angeles and pointed out that the younger generation has had limited education about the risks of Black gay life.

“We don’t even think about the fact that so many young Black gay men were never taught about HIV and condoms in school,” he said. “We don’t learn that.”

Deion Scott Hawkins does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.