A Powerful Tool. Out of Reach for Most
In the U.S., women account for a fifth of new infections.
But a persistent lack of education means few even know about the highly effective medication known as PrEP.
When sexual health advocate Masonia Traylor speaks about HIV prevention to young women around the United States, her goal is to tell them about a pill that is 99 percent effective in preventing transmission of the virus.
As long as they take it daily, if they happen to have unprotected sex with someone who is HIV-positive, they won’t get infected.
It’s a tool that the HIV community could have only dreamed about during the early days of the AIDS epidemic, but it’s long been out of reach for many people.
Although the U.S. Food and Drug Administration approved a drug combination called Truvada (for prevention) in 2012, a 30-day supply of the preexposure prophylaxis, or PrEP, cost anywhere from $1,600 to $2,000. Insurance coverage has varied widely, and patients often faced high out-of-pocket costs or had to rely on patient assistance programs offered by the federal government or drug manufacturer Gilead.
But this year, in a long-awaited public health milestone, PrEP became more affordable or even free. Cheaper generic versions are now available for less than $50 a month, and health insurers must offer PrEP at no cost as a preventative service under the Affordable Care Act.
Public health officials hope that making PrEP—which blocks a key HIV protein the virus needs to replicate—more accessible will finally put a dent in the persistent rate of new HIV infections. The rate has fallen 8 percent in the overall population, from 37,800 new cases in 2015 to 34,800 in 2019, but the decline was mostly among young gay and bisexual men.
The trajectory of the women’s epidemic, however, is still as depressing as ever. This is especially true for women of color living in one of the 57 U.S. counties, territories, and states where more than half of all new infections occur. In the United States, women accounted for a fifth of the nearly 7,000 new infections in 2019 and nearly a quarter of the 1.2 million people living with HIV, according to statistics from the U.S. Centers for Disease Control and Prevention. (Globally, women make up half of 1.5 million new HIV cases each year.).
If you’re a Black woman, you are 13 times more likely to get infected than a white woman; Hispanic women have quadruple the risk.
By the Numbers
And yet, according to the most recent statistics, very few women regard PrEP as their salvation.
The CDC says the women who may benefit from PrEP are those who consistently engaged in anal or vaginal sex without a condom in the past six months, had an HIV-positive partner, or shared needles while injecting drugs. In 2020, out of 227,000 U.S. women who were estimated to be in that high-risk group, only 10 percent had filled a prescription. By contrast, 28 percent of nearly 1 million eligible men or transgender women sought out PrEP that year.
“The PrEP uptake is discouraging when you have such a powerful intervention from a public health perspective,” says Jennifer Kates, senior vice president and director of global health and HIV policy at Kaiser Family Foundation, a nonprofit organization focusing on national health issues. “It’s one of the most effective tools we have, but women have been overlooked as a target audience.”
Barriers to Education
Traylor, 34, didn’t know much about the risk of HIV to women when she was diagnosed at age 23. “I was devastated. I got it through heterosexual sex. I had been with only two different people,” she says. Although a new generation of antiretroviral medications has made it possible for her to embrace what she calls a “dope life,” she has made it her life’s work to try to spare others the trauma she’s endured. “I was angry for six years,” she says.
There was the emotional fallout: First came the terror that Traylor’s daughter, who was born shortly after her diagnosis, would be infected. (The baby was fine.) Or that Traylor wouldn’t live long enough to raise her. Or that her children would be bullied or discriminated against because of her status. Or that men would refuse to date her if they knew she was HIV-positive.
Then there’s the physical toll: The medications that keep her alive can come with side effects, such as diabetes, cardiovascular disease, kidney problems, and bone loss. Research also suggests HIV-positive people age faster at a cellular level and have an increased risk of cancer.
During her educational presentations, Traylor has found clues to why young women may not be interested in PrEP—even when cost is less of a barrier. For starters, the ads they might have recently seen for PrEP in their cities or on social media aren’t aimed at heterosexual women. “People think it’s just for gay men,” she says.
Then there’s the fact that women ages 25 to 34 accounted for the largest share of new U.S. infections in 2019. For them, the disease doesn’t trigger the widespread fear it did in the 1980s and ‘90s. That’s when reports circulated about HIV-positive children being banned from school, or HIV-positive workers being fired from jobs, and Americans thought that HIV-caused AIDS was the most urgent U.S. health problem.
“My message is that PrEP is here if you want to use it,” she says. “You don’t deserve HIV when it can be easily prevented.”
But it’s impossible to discuss women’s awareness of and access to HIV prevention options without mentioning race, given that Black women routinely make up more than 60 percent of new infections among females, says Dazon Dixon Diallo, who founded the Atlanta-based organization SisterLove in 1989.
“If you don’t think that race and gender haven’t played a role in our exclusion, then you’re not living on this planet,” says Diallo. “It’s not a surprise we’re still fighting for inclusion.” Like many other critics, she’s quick to point out that the lion’s share of HIV funding has been earmarked for men.
The PrEP story is no different, she says, explaining that women and girls aren’t being educated about the availability of the HIV prevention drugs. Neither are sex and reproductive healthcare providers or staffers in family planning clinics. Currently, many doctors refer patients to infectious disease specialists—an intimidating practice that could potentially turn off some people.
Expanding Available Options
Perhaps the most recent blow to women was the announcement in October 2019 that the FDA had approved a second-generation PrEP drug called Descovy for men and transgender women only. The move prompted now-CDC director Rochelle Walensky and Robert Goldstein of Massachusetts General Hospital to write a piece in the New England Journal of Medicine with the headline “Where Were the Women? Gender Parity in Clinical Trials.”
Since then, manufacturer Gilead has launched a separate trial for more than 5,000 women in South Africa and Uganda that compares oral pills Truvada and Descovy, and a third drug, a sub-cutaneous injectable that lasts for six months. “We heard feedback that people often don’t want a daily pill,” says Moupali Das, HIV Prevention Clinical Development Lead at Gilead Sciences in San Francisco. However, the results aren’t expected for a couple years. Advocates such as Krista Martel, executive director of the nonprofit Well Project, applaud the drug maker’s move, but she says women are missing out in the meantime. “Descovy is marketed as a better PrEP that doesn’t have the same risks of bone loss and kidney disease, but women only get access to generic Truvada,” she says.
There might be other options available before then. In January, the FDA is expected to approve a monthly intra-muscular injectable drug for HIV prevention called Cabenuva, made by ViiV Healthcare, which is majority owned by GlaxoSmithKline. Similarly, a monthly vaginal silicone ring that was developed by the International Partnership for Microbicides delivers an antiretroviral drug; it was approved in Europe last year and is now under review at the FDA.
New Drugs Aren’t Enough
Yet public health experts warn that new drug approvals alone won’t improve health equity among the minority groups who suffer the most from HIV infections. One reason is the dismantling of health services offered to them.
In 2019 nearly 900 health clinics under the federal family planning program Title X lost funding—slashing their services by half—as part of a so-called “domestic gag rule” prohibiting funding if staffers referred patients to abortion providers. “Many family planning and women’s health clinics provide preventative services, including HIV counseling and testing, that many poor women might not be able to get elsewhere,” says Jewel Mullen, associate dean for health equity at Dell Medical School at the University of Texas at Austin.
There is some good news—and potential funding—on the horizon. As part of the 2022 fiscal year budget, President Joe Biden requested $275 million for HIV prevention and testing—an increase of $100 million over the previous year. The White House initiative would include efforts to increase access to HIV testing and PrEP in sexual health and Title X clinics. “The new HIV strategy talks about the missed opportunities to provide HIV services in these settings,” Harold J. Phillips, director of White House Office of National AIDS Policy, told National Geographic in an email. “We must scale up these services to better close the disparity gap, especially among minority women.”
And as of this summer, the Affordable Care Act requirement that mandates health care providers offer PrEP at no cost by 2021, now includes coverage of support services such as HIV prevention and care, pregnancy and sexually transmitted infection testing, counseling, and kidney monitoring.
The part of the story that most frustrates advocates, though, is the silent barrier that’s rarely discussed: stigma. In 2017 researchers surveyed nearly 600 Planned Parenthood female patients from cities with high infection rates in Connecticut. They found that these women had negative associations with PrEP; 37 percent believed others would think they were promiscuous, and 32 percent worried that others would think they were HIV-positive. Thirty percent said they would feel ashamed to tell others that they used PrEP and anticipated disapproval from family, sex partners, or friends.
Another challenge is that some women don’t want to talk frankly about their sex lives with health care providers, especially the number of partners they have and whether they use condoms, for fear of being judged, adds science and policy researcher Judith D. Auerbach. Part of the issue is how the medical community talks about PrEP; the CDC guideline “labels people as ‘at risk,’ as if you’re a risky person,” says Auberbach, who’s also a professor of medicine at the University of California, San Francisco.
Reframing PrEP as Empowerment
A more successful approach would involve bigger discussions about women’s overall sexual health. “The question should be, If you’re sexually active, what concerns you most? I should be able to tell you my story and then have a conversation about prevention,” says Diallo of SisterLove. “It’s centered on their wellbeing, pleasure, and desire, and not our desire to stop the spread of disease.”
That shift in framing HIV prevention as “self-care” is behind a so-called human-centered program aimed at high-risk adolescent girls and young women in South Africa that was funded by the Bill & Melinda Gates Foundation. PrEP is positioned as a tool in your personal journey that includes sexual satisfaction and protecting your health; an educational poster encourages participants to imagine the path to “Becoming a Queen” in their relationships.
That’s also the message behind the CDC’s recent “She’s Well” campaign aimed at increasing awareness of PrEP among women and healthcare providers. One video features drawings of racially diverse women holding a blue pill accompanied by captions, including: “I take PrEP because I’m in control,” “I take PrEP because I love my sex life,” and “I take PrEP because I’m worth it.”
“We’re learning new lessons that even if people are at risk, they might not be thinking about it. There’s a lot of research that they want to talk about their relationships and sexuality in an open, comfortable place. Those are the programs we need to deliver,” says Mitchell Warren, executive director of AVAC, a nonprofit organization focused on global HIV prevention. “We need to say, PrEP is here. It might be helpful to you. It’s not for an at-risk group. It’s for anyone who wants to be safe and secure and empowered against HIV.”
That includes Brit Williams, 31, an education professor who lives in Minnesota and Georgia. She started taking PrEP in 2018 after learning about it from her Black gay friends who live in Atlanta, a city with a high HIV incidence rate. “I was actively dating around and wanted to make sure I was being safe,” she says. “I take birth control in order to prevent an unwanted pregnancy. I thought, What can I add to my toolkit?”
Williams, who is Black, is willing to become a local ambassador to spread awareness of PrEP to other women. “Put me on a billboard in Atlanta,” she says. “We need to see the faces of women in our communities.”
Editor’s Note: This story was supported by a grant from the Economic Hardship Reporting Project.
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