Did you know there were more new diagnoses of HIV in Europe in 2014 than at any point since the 1980s? In fact, Europe is home to the fastest growing HIV epidemic on earth. Faced with this fact, many people are taking prevention into their own hands as they begin to seek ways to secure PrEP even though access is highly limited in the region. In a new report by the PrEP in Europe Initiative we tell these stories.

Oral PrEP using TDF/FTC, known to be almost 100 percent effective at preventing HIV infection when taken as prescribed, was recently approved by the European Commission. This allows for the ARV combination of tenofovir and emtricitibine to be marketed as HIV prevention across the European Union.

Yet outside of France, where PrEP is available through the national health system at no charge, it is not available to anyone in a European health system unless they pay full price for the medication and find a doctor willing to write a prescription for it. Costs can reach several hundred euros per month. It has been available in the US through public and private health insurance plans for over four years now.

Gay men and other MSM in Europe are aware of the unacceptably high numbers of new diagnoses in their communities. These rates tell us that condoms alone are simply insufficient to protect all those at risk all of the time. The analogy with birth control is worth considering: women do not solely rely on male condom use to prevent pregnancy. Gay men, and other people at high-risk are therefore desperate to get their hands on the new blue pill, trademarked by the company Gilead as Truvada.

In “PrEP Access in Europe” by the PrEP in Europe Initiative, we set out the ways in which people across the European region are securing PrEP outside of traditional health systems and often outside of medical supervision. These include sharing pills among friends, smuggling pills into Europe from abroad, ordering generic versions on-line, and buying them on the black market. Emergency HIV prevention regimens for the ‘morning after’, formally known as PEP, contain Truvada and are therefore also being mined for the blue pills, with the rest thrown in the bin.

These DIY (Do it Yourself) approaches are worrying to physicians and PrEP advocates alike. One concern is that some people may be taking PrEP without a confirmed HIV-negative test result. Being sure you are HIV-negative when starting PrEP, and going for regular HIV tests are key to safe, successful PrEP use. TDF/FTC can also have side effects, both minor and, in rare instances, severe that can only be dealt with in the context of a health setting—so home-based PrEP might be a risky manoeuvre. Lastly, inadequate dosing or irregular drug supplies are not suitable when it comes to PrEP, just as they aren’t suitable for ART. For example, popping only one pill at the weekend, or a few pills here and there, won’t provide protection.

The Report shows that, in the absence of government and health authority action, DIY PrEP is the outcome. The fault does not lie with people who are seeking to take control of their HIV prevention options but with the national authorities that have failed to act.

The report calls on European governments and health authorities to take immediate action to make PrEP available to populations at imminent risk of HIV as a matter of urgency. Read the full report here.

Rebekah Webb is an HIV advocate and policy analyst with over 20 years of experience. She is a founding member of the PrEP in Europe initiative, currently sits on the Prevention Portfolio Steering Committee of the European AIDS Treatment Group, and is a partner in the management of AVAC’s European ROAR advocacy program.

It’s been five months since the first ever consultation about PrEP for gay African men was held in South Africa. (Yes, there was consensus at the meeting at the outset to use the term “gay men”, rather than MSM, and also to be clear that we were not addressing the specific needs of transwomen, an urgent and separate agenda.) It’s terrific to be able to share the meeting report from the April consultation, and to provide the first of a series of ongoing updates, in this case from Kenya and Uganda, about work to expand access to oral PrEP to all the Africans who need it!

From Kenya, the key population focused organization HOYMAS held their HIV/AIDS Champions’ Day in Nairobi on Monday this week. This year HOYMAS focused their HIV/AIDS Champions’ Day on highlighting the advocacy needs for new prevention options including oral PrEP. The event provided a platform for participants to exchange best practices, strategies for advocacy and ideas that advance the overall goal of prevention of HIV. One highlight from the meeting was when Brandon, who was named Kenyan PrEP ambassador by a Kenyan health organization known as LVCT, won the PrEP User of the Year.

Earlier in September, the Uganda LGBTQ community, led by Sexual Minorities Uganda (SMUG), held a meeting to discuss expanding PrEP access that put gay men at the center.

I am personally intrigued by the resilience of SMUG and of the entire Uganda LGBTQ community, even in the midst of the unrest. In the past six weeks alone, they have endured terrible police brutality at a Pride-related event, cancellation of the main Pride parade and ongoing harassment and stigmatization. In the midst of these rights violations, and their crucial work as human rights’ defenders, SMUG is also helping to ensure that the right to health is upheld. I salute them.

The September 9 meeting, held at a secure location, brought together about 25 participants from civil society organizations, members of Uganda’s LGBTQ community and members of SMUG. Some of the participants were attending a PrEP advocacy strategy meeting for gay men for the first time.

Richard Lusimbo from SMUG, the lead organizer of the meeting, reports that there was a deep sense of urgency within the members of the community who were at the meeting and others who were following on social media. You can get a sense of the lively discussion by searching #PrEP4MSM on Twitter he questions debated by meeting participants included: “Where has PrEP been?”, “Why don’t we have it yet?”, “How do we make this important prevention method available for our community now!?” Lusimbo noted, “The key word is ‘NOW.’” They want it now and they deserve to have access to it now!

The meeting participants stressed that community members need to be empowered with more education and information about PrEP. Many people are still confused about the difference between PrEP and PEP. PrEP stands for pre-exposure prophylaxis. It is an HIV prevention strategy in which HIV-negative people take an oral pill once a day before coming into contact with HIV to reduce their risk of infection. PEP stands for post-exposure prophylaxis. PEP is an HIV prevention strategy in which HIV-negative people take a short course of ARVs after possible exposure to reduce their risk of HIV infection. Basic questions that members of the community might be having about PrEP need to be asked and answered.

Some of the participants expressed the fear of continued stigmatization and homophobia in the country that might be heightened if PrEP is considered only for MSM. They stressed the need for PrEP to be rolled out for all populations at risk, as WHO has recommended, so that the Uganda government can support it without singling out specific populations.

Participants also expressed the need to come up with a clear communications strategy to inform the community about PrEP and to address misconceptions.

Further allies in PrEP advocacy in Uganda such as Health GAP helped members challenge the myth that lack of government funding in the short term should hold back implementation advocacy.

We are very excited about the ongoing PrEP advocacy and the work to create demand for prevention options for all populations in Africa, especially those most at risk. Ongoing collaboration with our Africa partners supports a broad and crucial effort—engage with national governments and other stake holders, advocate for the development of national PrEP guidelines and make sure there is community awareness of PrEP.

Watch this space for how the group moves forward in the weeks to come.

This article, originally posted on the US-based Betablog.org, 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 PleasePrEPMe.org. 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.