As a college student in rural Georgia, Covin found out she had HIV after going to the school’s health clinic for birth control. Upon learning her positive status, her first thought was, “Will I be able to have children one day?” Her doctor, who was white, offered little comfort. “I asked him if I could have kids, and his response, to this little Black girl in the office by herself, was, just as long as I realized that my children were going to be orphans.” The experience made her determined to combat misinformation like the kind she had received from that doctor — and to provide education and emotional support to others. Now the mother of an 11-year-old son and 6-month-old daughter, Covin works for The Well Project, a nonprofit focused on helping women and girls living with HIV and those at risk of contracting it. Part of that work includes spreading the word about PrEP, which the U.S. Food and Drug Administration approved in 2012 for the safe and effective prevention of HIV. The medication, sold in oral form under the brand name Truvada, is 99 percent effective against contracting HIV from sex when taken daily. In 2021, the agency approved an injectable version called cabotegravir (Apretude) that’s administered every two months, in part to help people who can’t adhere to a daily pill regimen. But the existence of these medications isn’t enough: Many of the people most in need of PrEP face the most difficulty getting it. A decade after its release, a frustrating web of discrimination and bureaucracy stands in the way of PrEP access for many — particularly for Black women, Black and Latino gay and bisexual men, and young people.
Black Women Face Unique Challenges in Terms of HIV Prevention
According to the Centers for Disease Control and Prevention (CDC), Black women are disproportionately impacted by HIV, compared with women of other races. But a study published in the Journal of Acquired Immune Deficiency Syndrome in 2021 found that doctors are swayed by racial bias when deciding who is or isn’t a good candidate for PrEP. Shawnika Hull, PhD, an assistant professor of communication at Rutgers University, was the lead researcher on that study, which found that healthcare providers who scored high on a modern racism measure were less willing to discuss PrEP with Black women — or prescribe it to them — compared with white women. “One of the most common factors in women’s consideration of their own use of PrEP is whether or not their healthcare provider supports that decision,” Dr. Hull says. “So, if the healthcare provider introduces it or discusses it with her, she’s far more likely to intend to use it.” But, Hull adds, “One of the common factors that leads healthcare providers to prescribe PrEP is that the patient is asking for it, so this creates a circular problem where women don’t really know about it, but they’re looking to their doctors for guidance, and doctors are only going to talk to them about it if the patient asks.” Hull’s research found that healthcare providers may lack confidence in a Black woman’s ability to adhere to a medication schedule, which often goes back to negative stereotypes. Updated guidance from the CDC might change the impact of these racist beliefs, Hull says. “The new clinical guidelines from the CDC recommend that providers talk to every single patient who is over the age of 18 and sexually active about PrEP, so I think that has the potential to move the needle,” she says.
Getting on PrEP Can Be Challenging for Black and Latino Men Who Are Gay or Bisexual
Black and Latino gay and bisexual men also struggle to get PrEP prescriptions. Kenyon Farrow, a managing director at the nonprofit PREP4ALL, says that assumptions about who PrEP is meant for can get in the way. “A lot of people think PrEP is either just for gay men or for people who have a lot of sexual partners,” he says. “I would say that PrEP is for anyone who just wants to take their sexual health into their own hands and not rely on a partner to wear a condom or assume someone’s serostatus [HIV status] based on how they look.” Even when a person is interested in taking PrEP, the process of acquiring the medication can be difficult, which Farrow knows firsthand as a Black gay man who has been on PrEP since 2015. At the age of 40, while serving as the policy director at Treatment Action Group, he ran into bureaucratic hurdles when trying to get his prescription filled. It took two days of phone calls before he was able to get the pills he needed, he says. “I think about a 22-year-old trying to access PrEP,” Farrow says, envisioning a younger and less empowered person than himself encountering the same obstacles he did. “They just may have given up when facing those early barriers.” Farrow believes that part of the reason Black gay men aren’t as likely to take PrEP is that drug companies have marketed the regimen primarily as a kind of “boutique prevention pill” for white gay men, particularly those living in large cities, who tend to have better health insurance. “Over the course of the last decade, we’ve seen HIV rates drop pretty precipitously among white gay men, and kind of flatline among Black folks and particularly Black gay men, and actually start to increase among Latino gay and bisexual men — because of the problematic infrastructure of accessing PrEP,” he says. According to the CDC, between 2010 and 2019, the rate of new HIV infections among gay and bisexual men decreased 32 percent for white men, but stayed nearly the same for Black men and actually increased 16 percent for Latino men.
Young People Also Need Better Access to PrEP
Chris Owens, PhD, MPH, an assistant professor of health and kinesiology at Texas A&M University, was the lead author of a study published in AIDS and Behavior in 2021 that found that parental support impacted access to PrEP among adolescent sexual minority males. Dr. Owens explains that there are three main barriers to youths accessing PrEP: logistics, lack of parental support, and providers who may be reluctant to prescribe PrEP. “We just do a really poor job of giving youths the tools to advance their sexual well-being,” he says. “We don’t teach youths about evidence-based sexual health practices, condom use, consent, or HIV and other sexually transmitted diseases,” Owens says. “PrEP is just one item in that sexual well-being toolkit. Some researchers have compared PrEP to birth control pills but for HIV — and that’s probably a good comparison. Birth control pills can prevent pregnancy, and PrEP taken daily can prevent HIV.”
People in Certain Parts of the U.S. May Have More Difficulty Getting PrEP
As Farrow notes, the uneven rollout of the Affordable Care Act means that people living in certain parts of the United States may have more limited access to PrEP. Currently 12 state governments — many of them in the South — have chosen not to accept billions of dollars in federal money to expand their Medicaid programs for poor people and working class people in jobs that do not provide healthcare. To help address the cost of care and issues with inequitable access, in March 2022 the Biden administration renewed a program called Ready, Set, PrEP that makes daily oral HIV medications available for free nationwide. It’s a welcome stopgap, but for people already living with HIV, it’s not enough. It’s no wonder that Covin returned to Philadelphia, despite how much she appreciated her life in Georgia. “Because of those experiences in smaller rural communities, I don’t feel like that is the best place for me to live with HIV,” she says. “I need to stay close to where I know they’re getting the funding to provide me with labs, and meds, and just overall care, even if I fall outside of some income limit. I need to be able to have support just to know that I will be okay.”
