Half of Black gay men will be diagnosed with HIV, despite highly effective preventive treatments − why?

At a pharmacy in Iowa, a 42-year-old Black gay man couldn’t find a medication he needed. The pharmacist, a white woman, told him they didn’t stock that medication. But while he waited to pay for his other purchases, he saw another customer place the medication he just asked for on the counter.

“I felt really bad,” he said. “I think (when) people place their biases alongside their profession, it makes it difficult to access (health) services.”

One of these services include PrEP, or preexposure prophylaxis, a highly effective prescription medication that prevents the spread of HIV.

Black gay and bisexual men made up about 38% of the estimated 37,981 new HIV diagnoses in the U.S. in 2022. The Centers for Disease Control and Prevention estimates that approximately 50% of these men will receive an HIV diagnosis during their lifetime.

Despite being disproportionately affected by HIV, Black gay and bisexual men have one of the lowest rates of PrEP usage across all age groups. Many of them live in the South, which has the highest number of people living with HIV in the U.S. but very low PrEP uptake due to stigma, cost and homophobia. Other barriers include lack of trust in the health care system, discrimination, poverty and limited physician knowledge about PrEP.

PrEP faces significant barriers for widespread use among the most vulnerable populations. In 2022, only 36% of the 1.2 million people who could benefit from PrEP were prescribed the medications. As public health researchers studying why Black gay and bisexual men have low access to PrEP in Iowa – a rural state with growing rates of HIV infection, especially among sexual and gender minorities – we recently published a study that highlighted some ways to improve prevention.

Trust and discrimination

Non-Hispanic Black people comprise only 4% of Iowa’s estimated population of 3.1 million. However, they accounted for 24% of people in Iowa living with HIV in 2022.

A report from the Iowa Department of Health and Human Services found that only a little over 23% of people in need of PrEP in Iowa had active prescriptions in 2021. Another report found that a state program designed to expand PrEP access through telehealth, called TelePrEP, saw significant disparities in treatment initiation. Only 10% of the people who started PrEP through the program were Black. In contrast, 83% of those who initiated TelePrEP were white.

To better understand the factors that hinder or help Black gay and bisexual men in Iowa access PrEP, we interviewed 12 HIV-negative community members about their experiences with the drug. They were between 20 and 42 years old and lived in Johnson and Black Hawk counties, where there are some of the highest rates of HIV infections in the state. We recruited them through dating apps, social media platforms and local organizations.

Some men were concerned that using PrEP might create mistrust in their intimate relationships.

“[F]or you to engage in a sexual relationship with a partner, there needs to be a level of trust,” one participant said. “You having to take a drug before you engage in sexual activities shows there is no trust for your partner.”

Other men were concerned about experiencing stigma and discrimination. Some people in the gay community associate the use of PrEP with sexual promiscuity, leading to a fear of being judged for using the medication.

“If you are not hooking up, what would be the reason for you to be on PrEP?” one participant said.

Some men also had negative experiences with health care services, including being denied access to medications due to their race.

Most of the men felt that inadequate medical insurance was a major barrier to PrEP usage. Five of our participants had no medical insurance, and only two had public medical coverage. Some of the participants were students with restricted access to private insurance.

“There are lots of people who are uninsured,” said one participant. “It would be nice if the government can actually make this a thing that everyone can access – just like the self-test kit for HIV.”

Many of the men had little or no prior knowledge about PrEP. “Yeah, I’m not too conversant with PrEP,” one participant said. “That’s why I actually decided to come on this study, to actually learn more about it.”

Some men were afraid of the potential side effects of the medications. One participant was concerned about the risk of developing cancer from using the drugs in the long run. There is no evidence that PrEP increases cancer risk, but an HIV infection can.

Finally, some men were also worried about how effective the medications were and if they could rely on them if they had a partner living with HIV. However, when taken appropriately, PrEP can reduce the risk of sexually transmitted HIV infection by about 99%.

Populations interviewed for other studies have raised similar concerns about the treatment, including transgender women in Colombia and gay and bisexual men in the Midwestern U.S..

Improving access to PrEP

Despite the significant obstacles Black gay and bisexual men face in accessing PrEP in Iowa, our study also highlighted possible solutions.

Most of our participants agreed that public health awareness and education about PrEP are crucial. “You could reach out through the radio and flyers. You could put them in the barber’s shop, the salon, the supermarket,” one participant suggested. “I think those are public places that people could really access.”

Some highlighted the importance of developing culturally sensitive educational programs across various platforms to better engage the community. As one participant shared, “Conducting seminars and focus group discussion, and teaching people about PrEP could really help.”

Participants also suggested that providing PrEP regardless of insurance status would help address financial barriers to accessing this preventive medication. For example, free or cheap access to all forms of PrEP, especially for low-income earners at risk of HIV, could be a game changer.

Our participants also highlighted the role trusted physicians could play.

“To convince me to start something like PrEP, it would need to come from someone I already trust,” one participant said. “Their expertise and personal knowledge of my health would make their advice particularly persuasive.”

Oluwafemi Atanda Adeagbo receives funding from the University of Iowa and the National Institutes of Health

Joy Edeh 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.