“There’s a pill?!”
A young man named Fortune drove me to the International Convention Center in Durban 2 weeks ago to attend the 2016 International AIDS Conference. What started out as polite small talk resulted in an engaged discussion about new HIV prevention options that have recently become available on the South African market. Specifically, we were discussing oral PrEP (pre-exposure prophylaxis), a pill that reduces the risk of HIV transmission upwards of 90 percent when taken daily by people who are HIV negative. It is just the first of a number of new HIV prevention innovations coming down the pipeline, including other pills, a vaginal ring, and long-acting injections.
For the past year, FSG has been working as part of the OPTIONS Consortium, a USAID-funded, 5-year initiative led by FHI 360, AVAC, and Wits RHI to accelerate the market launch and uptake of new HIV prevention technologies. Fortune himself illustrated the challenges of this perfectly—with hope in his voice he asked about effectiveness, followed-up with questions about where he could get it, and then wondered why he didn’t know about it already. “Would you actually take it every day?” I asked back, channeling some of the field’s skepticism about adherence by young PrEP users. “Of course I would,” he answered, “That’s why I’m asking you all of these questions!”
But getting PrEP to everyone who needs it is tricky. Truvada, currently the only form of oral PrEP on the market, has been used primarily by men who have sex with men (MSM) in the United States and it was just approved in South Africa and Kenya in the past 10 months. So far, only South Africa has made it available for use in clinics that serve sex workers who are at highest risk of HIV infection (HIV prevalence rates among the sex worker population in South Africa are estimated at 60 percent) and it will likely also be made available to MSM in these countries (in South Africa, estimates of HIV prevalence amongst MSM ranges from 13 – 49 percent). But no governments have committed to making this available to the broader public and specifically to adolescent girls and young women aged 15 to 24 who are at increasingly high risk of contracting the disease. In South Africa, HIV prevalence rates range from 5.6 percent for girls aged 15 to 19 years old, ballooning to 31.6 percent for young women aged 20 to 24 years old. Such a sharp rise in HIV prevalence is driven by interrelated factors of a practice of transactional sex in exchange for financial resources, age-disparate relationships between younger women and older men, and the difficulty these young women face to advocate for condom use in their relationships.
PrEP could be a hugely valuable option for these girls—one that they can take at their own discretion without the consent of a partner—but the availability of new options has raised many new questions for national ministries of health and global donors. The pills remain expensive, and while cheaper generic options are currently awaiting regulatory approval, the proposition is still costly relative to existing options like condoms. With this cost burden, how do we decide who should have access to PrEP and how do we reach those at “highest risk” for HIV? How do we support adherence of a daily pill regimen so that we actually realize HIV prevention impact? How do we tackle the prevailing gender norms and social stigma to empower and enable young women to actually use PrEP?
There are many reasons to believe that these challenges can be overcome. Reaching adolescent girls and young women was one of the most discussed topics at AIDS 2016. Most prominent was DREAMS, a $385 million partnership between PEPFAR, the Bill & Melinda Gates Foundation, Girl Effect, Johnson & Johnson, Gilead, and ViiV Healthcare in 10 African countries with a goal of reducing new HIV infections by 40 percent among adolescent girls and young women by 2017. Beyond DREAMS, understanding how best to prevent infections in this demographic was raised by everyone from the World Health Organization, to UNAIDS, to Population Council and AVAC, to Wits RHI from South Africa and LVCT Health from Kenya. And we are seeing new innovations in the field, from self-testing kits that will enable people to test for HIV in the privacy of their own homes (like this one that I got to see in action at the conference) to new data collection and information dissemination channels, like UNICEF’s U-Report, which leverages SMS to capture real-time data and provide HIV counseling remotely.
Most importantly, we heard the voices of young women using HIV prevention. The OPTIONS Consortium organized 2 sessions at AIDS 2016, focused on end users of oral PrEP and some users of the upcoming Dapivirine Ring being developed by the International Partnership for Microbicides. At both, young women spoke up about their challenges and why they wanted access to these new HIV prevention technologies. They reminded us of the importance of health care workers, noting that it often “feels like you’re being interrogated” or that “you will just be turned away” if you ask about HIV as a young person. They noted how difficult it was to adhere to a daily regimen, because taking a daily pill made it feel “like you already have HIV.” And they noted that sometimes their own family members are the biggest barrier, as one young woman noted her aunt “thinks the pills make us crazy, so she keeps throwing them away.”
But we also heard how important it was to have HIV prevention options that women can control. “In South Africa, we marry young and we are told to do what our husband wants,” one young woman said. A young sex worker noted, “Sometimes, I want to use a condom, but he—he has the money and he doesn’t want to. So I hear him and I listen to him.” At one session, a young woman from the audience who was participating in the Dapivirine Ring trials stood-up and shared, “I will continue to use the ring for me and for other girls coming after me, so that they can also make their lives strong and well. This is our tool.” One transgender women shared the “relief” that she felt being on PrEP.
The job of public health officials, donors, and advocacy groups is to help make the promise of HIV prevention a reality for women and girls as soon as possible. Through the OPTIONS Consortium, FSG will be working with in-country advocates in Kenya, Zimbabwe, and South Africa to explore scenarios to make oral PrEP available to adolescent girls and young women in a way that will make effective use of national government and donor resources—for example, by working to identify delivery channels that can be leveraged in a cost-effective way to reach those at the highest risk for HIV transmission. If we get this right, it will lay the groundwork for all of the other products that will be coming down the pipeline in later years.
“Make PrEP famous!” one young panelist urged us. It is the perfect rallying cry for our work ahead.