Two Women, Both with Stories Showing How Hard It Is for Women to Get PrEP

September 12, 2016

This article, originally posted on the US-based, is a strong reminder that PrEP access for women is facing significant hurdles in the US and around the world. AVAC is working with partners including the US Women & PrEP working group and current Fellows Nigeria’s Amaka Enemo, Zambia’s Chilufya Kasanda and South Africa’s Ntombozuko Kraai, to address this critical gap.

One year: That’s the amount of time it took for Elena and Freya1—two women with HIV-positive male partners—to figure out how to access pre-exposure prophylaxis (PrEP) and get their first prescription filled after finding out about this option for HIV prevention. Both women live in the Southern US—in states with some of the highest rates of HIV infection. Both women identify with a race/ethnicity disproportionately affected by HIV (Elena is African American, Freya is Hispanic). And both are HIV-negative—and wish to stay that way.

Their respective experiences—having to advocate for their own health and demand access to an effective HIV prevention drug—highlight the many challenges women still face in accessing, paying for, and even getting information about this effective way to prevent HIV.

“When I read about PrEP for the first time, I thought, ‘Is this real?’ And then I got a little upset. I even asked my OB/GYN after the fact, ‘Why didn’t you ever tell me about this?,’” said Elena.

After three years, PrEP use by women still lags behind use by men

Truvada-based PrEP was approved by the FDA for the prevention of HIV in 2012. Just last month, the drug’s manufacturer, Gilead Sciences, released data on the number of people starting Truvada-based PrEP in the US. In three years—from the third quarter of 2013 to the third quarter of 2015—the number of people taking PrEP in the US has increased by 523 percent. But when you look at the breakdown by sex, it’s clear that men (especially men who have sex with men) are responsible for the increase.

The Centers for Disease Control estimate that about 468,000 women in the US have substantial risk for HIV and may benefit from PrEP, but only a relatively small number of women have accessed PrEP in the US to date.

In fact, from 2012 to 2015, the number of new women starting PrEP per year has declined over time, with about 2,600 women starting PrEP in 2012 to about 2,500 each starting in 2013 and 2014, and a little less than 2,500 starting PrEP in 2015. PrEP uptake among African American and Hispanic women is significantly less than that of white women.

Compared to men, PrEP uptake by women has steadily lagged behind—with less than 2,500 women initiating PrEP in 2015 (compared to over 19,000 men in that same year).

Women won’t use PrEP if they don’t know it exists—or that it could work for them

“It was surprising to find out about something that I might be able to use that I had never heard about before,” said Elena. “And then when I started doing research online about PrEP, all I found were articles about PrEP for gay men. I thought—there’s no way I’m going to be able to get this. Very few things online said anything about PrEP for women.”

Susan Alvarado, who coordinates a PrEP study for cisgender women at AIDS Project Los Angeles, said that she’s seen similar responses from women she’s spoken to about the study. At a presentation at a community event, she found women in attendance didn’t know about PrEP, or through it was only for men who have sex with men. When doing outreach in the HIV community, she found that people knew about PrEP but were surprised to hear about a project specifically for cisgender women.

There isn’t consumer demand for PrEP from women because there haven’t been many marketing campaigns targeting women who may be vulnerable to HIV, said Shannon Weber, MSW, director of HIVE and founder of Targeting women who may be at risk for HIV, she said, is difficult.

“There isn’t a club, or a clinic, or a bar that higher-risk women go to chat and hang out with other women at substantial risk. Gay men have done a great job identifying gay-friendly doctors and places they can get reliable health information. And even from an online perspective, it’s more challenging to target campaigns and ads to women at substantial risk than it is to target gay men. It’s a little more like, ‘Who is this group?’”

Which means that there isn’t the same “buzz” in the community about PrEP for women as there is for men who have sex with men, said Dázon Dixon Diallo, DHL, MPH, CEO of the women’s reproductive justice nonprofit SisterLove. When PrEP was first brought to the public space, she said, it was marketed as an HIV-prevention option for adult men and women. That changed, though, and many agencies began delivering information about PrEP specific to men who have sex with men.

“Most women don’t know about PrEP, so they can’t ask about it,” said Jessica Terlikowski, the director of prevention technology education at AIDS Foundation of Chicago. “They can’t demand what they don’t know about.”

Women may not be worried about HIV, or think of themselves as ‘at-risk’

Another challenge, said Diallo, is that many women—including African American women at other women at risk for HIV—may not consider HIV infection as a possibility or believe they are at risk.

“Women don’t think about relationships in terms of ‘risk-taking.’ And they don’t think in terms of ‘sexual behavior.’ They’re thinking in terms of relationships, which many times women may perceive as ‘safe.’ If I’m in a committed relationship, or I don’t have multiple partners—or even if I do—I may feel like I ‘know’ that person or those people. So there are some real issues around risk assessment,” said Diallo.

Alvarado said that a similar view can be found among women in the Latina community. “I think this happens a lot with our women,” she said. “They don’t see the risk because of the relationships they find themselves in. They may think, ‘I’m married,’ or ‘I only have one partner. Why would I need to be concerned about HIV?’ And even if their partner is being unfaithful, they’d rather not know.”

This sentiment stands in stark contrast to the deep-seated fear of HIV that many men who have sex report experiencing—and then report seeking PrEP to alleviate.

There’s no consensus on who should be providing PrEP to women

Both Freya and Elena reached out to their OB/GYNs in the hope that their reproductive and sexual health care providers could offer and prescribe them PrEP. Both had their requests rebuffed or denied outright.

Freya’s provider said she needed to find an infectious disease specialist to provide PrEP, while Elena’s didn’t know enough about PrEP to prescribe it.

“Provider training is an issue,” confirmed Weber. “Most of the provider trainings have been geared toward HIV providers, gay men’s sexual health providers—and very few have been directed toward women’s health providers, although that is shifting. It would take a coordinated, national effort to broadly train women’s health providers around HIV prevention counseling—beyond condoms.”

Both Elena and Freya were eventually able to find providers willing and able to prescribe them PrEP, but it took a while. Over the course of months, Elena contacted her fiancé’s doctor and his Ryan White advocate, and her primary care doctor—none whom were able to prescribe PrEP. Through a support group that she and her fiancé attend for those affected by HIV at an LGBT center in her region, she was linked to a PrEP specialist, who was finally able to help Elena start PrEP.

Freya heard from her OB/GYN that she wasn’t considered “high risk” enough to start PrEP, even though she was dating an HIV-positive man. Her OB/GYN said she wouldn’t be able to prescribe it since she wasn’t familiar with the medication, but that she’d do a little more research on it. She asked her, in the meantime, to reach out to HIV specialists, which Freya did. They, in turn, said they only served HIV-positive patients.

So she looked online for help—eventually finding assistance from HIVE, an organization based in the San Francisco Bay Area, which linked her to a provider at the University of Miami who eventually helped Freya start PrEP.

“It was crazy, that someone in San Francisco—all the way across the country—was helping me get where I needed to be,” said Freya.

This issue—of providers’ willingness to provide PrEP services—goes part and parcel with existing problems that women have accessing HIV counseling and testing through reproductive health service providers in some areas already, said Diallo.

“We have women diagnosed with HIV who tell stories about how long they went never being tested until they demanded it for themselves. It makes sense for all GPs [general practitioners] and other providing services to women to be educated to provide sexual health assessments, HIV testing and PrEP guidance,” she said.

Terlikowski, through the Midwest HIV Prevention and Pregnancy Planning Initiative, is working on just this issue—to bring PrEP education to women’s health care providers operating in the Midwest.

“Family planning settings are such crucial points, because the majority of women get their care from a family planning provider. A recent survey of family planning providers indicate they need more training to have the knowledge and skills to offer and manager PrEP. We’re really excited to have this program where we can help meet some of those needs—and to help make sure that conversations providers have with women are about their overall sexual health needs, go beyond ‘What are your contraception needs?’,” said Terlikowski.

And so far, the response by providers has been very positive, said Terlikowski, especially among nurses, who have shown great interest.

Affordability affects access and uptake

Elena said that she doesn’t have a better option than PrEP when it comes to HIV-prevention, so she’s willing and able to incorporate it into her regular routine. “Gilead covers the cost of the pill for me. I got a pharmacy card with help from the person at the LGBT center. But I will say this—I still have to pay for my labs—which I will need to get every three months. I get a bill for my labs and I’m on the hook for $300-something dollars.”

Freya had some difficulty, once she finally got a prescription, getting it filled. The pharmacy in a local grocery store chain wouldn’t fill the drug they considered a “specialty” medication, and referred Freya to a national pharmacy chain. Freya dropped her prescription off and received an assurance that her insurance company would cover it. Two weeks later, they asked her if she wanted to apply for copay assistance, which she had to enroll for separately.

“Access is the final piece,” said Weber. “If you look at where most women are acquiring HIV and at the most vulnerable women—Black women in the South—those are the states where the Affordable Care Act has not been rolled out. This is going to push forward the racial inequality in HIV acquisition among women. Even if you train providers, if they don’t have a way to bill for these different services, women will see that they’re not being allowed to access basic health care prevention.”

“People are expected to be responsible for their sexual health, but we don’t have easy access to these resources. My advice is to ask the questions, and be persistent,” said Freya.

1 Not her real name.