The United States has a proven treatment to reduce HIV infection risk by up to 99%. The health system just needs to get better at offering it. In 2021, the country had more than 36,000 new HIV diagnoses, yet PrEP (HIV pre-exposure prophylaxis) is used by fewer than 1 in 4 people who would benefit from it.
PrEP is preventive medicine—like statins to avoid heart disease—for HIV-negative people who risk infection through sex or drug use. Efforts to expand PrEP use include the U.S. Ending the HIV Epidemic (EHE) initiative to reduce new HIV infections by 90% by 2030. Health officials in Philadelphia, an EHE priority area, are partnering with LDI Fellows, the Penn Center for AIDS Research, and the Philadelphia Department of Public Health, in improving PrEP programs.
PrEP access is inequitable: People who are Black or Hispanic/Latino are overrepresented in new HIV diagnoses and women are 19% of new diagnoses, yet 10% or fewer of individuals in these groups obtain PrEP prescriptions.
Why? Stigma. LDI senior fellow Sarita Sonalkar, an associate professor of obstetrics and gynecology at the Hospital of the University of Pennsylvania, says that HIV and sex are often stigmatized in women. Devaluing people who use drugs, LDI associate fellow Maria Christina Herrera says, “contributes to both the overdose epidemic and the HIV epidemic.”
Philadelphia collaborations by LDI senior fellow Stephen Bonett, an assistant professor at Penn’s School of Nursing, suggest approaches for destigmatization. One is universal PrEP counseling. “Everyone gets the info,” he says. “It’s just part of comprehensive sexual health services.” Another is culturally relevant, humble care that acknowledges the cultural background many people bring to relationships and how little we know about others. “This puts patients and medical providers on an equal plane,” Bonett says. Having health workers with lived experience in the community also builds trust.
Herrera agrees: Trusted messengers reduce stigma. For people getting substance use care, certified recovery specialists—peers with lived experience and training in nonjudgmental communication—are “a surefire way to get patients to hear about PrEP.”
The messengers LDI senior fellow Dalmacio Flores works with are parents of LGBTQ+ children. Some communities have persistent stigma that particularly affects queer youth of color, he says. Flores, also an assistant professor at Penn Nursing, was part of a team that surveyed 400 self-identified Black gay and bisexual U.S. males, aged 18 to 29. Family support was associated with lower stigma and higher positivity about PrEP. However, open communication with parents about sex and drugs was linked to higher PrEP stigma, possibly because of parental discomfort and cultural attitudes about HIV.
The findings show the need for Flores’ Parents ASSIST program of animated information videos, piloted over the past few years, with a randomized controlled effectiveness trial in the works. “Parents are with their young person everyday,” Flores says. “They often provide health insurance, so inclusive, nonstigmatizing conversations about HIV and PrEP and normalizing insurance for health care around sexual behavior is more powerful than any public health message.”
Presenting PrEP as preventive, “like the pill but for gay kids,” normalizes it, Flores says. Flores also helps community and religious organizations, schools, and nonprofit groups communicate with LGBTQ+ youth about sexual health.
Nonjudgmental presentation of PrEP promotes interest in the treatment. LDI associate fellow Caroline Darlington—a Ph.D. student at Penn Nursing and Master of Law student at Penn Carey Law—with LDI senior fellow and Penn Nursing Professor Peggy Compton, surveyed 233 women vulnerable to HIV infection about PrEP awareness before seeing an informational video, and their intention after the video to start PrEP within three months. Overall, 42% were aware of PrEP before, but after learning about PrEP, 63% intended to initiate.
The study was part of the Just4Us trial led by LDI senior fellow Anne Teitelman, an associate professor emerita at Penn Nursing, who says these results show that “awareness and knowledge are key. PrEP has been approved for 12 years, but women who haven’t heard of it are hesitant, like we saw with the COVID vaccine.” Many cisgendered women who know of PrEP think it is for gay men, Teitelman says, so publicizing that PrEP is established HIV prevention for anyone—cis, trans, gay, straight, using or not using drugs—could increase uptake.