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Achievements and Disappointments: From Cape Town to Chicago

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Teresia Otieno
Wednesday, November 2, 2016

Teresia is a seasoned advocate for gender equality and sexual reproductive health and rights, especially for HIV-positive women. She is passionate about promoting HIV prevention strategies that work for women and girls. Teresia was a 2014 AVAC Advocacy Fellow and a founding member of the Personal Initiative for Positive Empowerment (PIPE Kenya). She is the vice chairperson of ICW-EA and represents the region in the ICW Global International Steering committee. She is a counselor by profession and currently volunteering with ATHENA Network in community engagement on gender eqality and HIV.

In 2014, at the peak of my excitement as an HIV prevention advocate and an AVAC Fellow, the first Research for Prevention (R4P) Conference was held in Cape Town. I left that conference anxious but hopeful about a few things: The outcome of the FACTS 001 microbicides trial, the outcome of PrEP demonstration projects in different countries, how implementation in the real world would look, and the start of the much-talked-about ECHO trial that will answer key questions about whether certain hormonal contraceptives increase the risk of HIV acquisition.

In the time in between Cape Town and Chicago a lot has happened in all of these areas, and so much remains to be done.

A few months after leaving Cape Town, new findings came out about FACTS 001. There was no evidence of overall protection associated with the gel tested. Younger women were not correctly and consistently using the gel, and therefore were not protected.

Results from PrEP demonstration projects showed that discordant couples using oral PrEP had very low levels of HIV transmission – reducing the risk by up to 96 percent. More demonstration projects with different populations are currently underway and will answer questions related to implementation. In Kenya and Uganda, the open-label demo projects continue to record high adherence rates among discordant couples.

We know PrEP works but availability is limited. In most African countries, PrEP is not yet part of public health programs. In a few places it can be obtained at demonstration sites that target specific populations. Kenya and South Africa are the only African countries where Truvada (the brand name for drugs used as PrEP) has been approved and it is now available in South Africa’s public health system for certain high-risk populations. Regulatory applications have been submitted in Botswana, Lesotho, Malawi, Mozambique, Swaziland, Tanzania, Uganda and Zambia (see complete global map here).

“People at high risk of HIV are more likely to take PrEP if [they are] drawn out,” said Dr. Elizabeth Irungu of the Kenya Medical Research Institute who was in Chicago for R4P. Drawing out people at high risk means many things including outreach, reducing stigma, and using innovative approaches to overcome structural barriers such as distant or understaffed clinics, prejudiced service providers. It also calls for training health workers and strengthening health and community systems. We still don’t have PrEP guidelines in most countries; Kenya for example has made big strides in PrEP and other prevention tools, yet policy makers are yet to develop guidelines, which instruct health workers on how to administer PrEP. At R4P 2016, Kenyan policy makers promised to do so by 2017.

In the US, PrEP is widely available to those at risk. However, there are disparities in access there too: 70 percent of those accessing PrEP are men; although 75 percent of new infections are among people of color, only 25 percent of them are accessing PrEP. And the disparities go on and on. Communication campaigns should reach out to women and people of color who are at higher risk of acquiring HIV.

The discussion around hormonal contraception and the risk of HIV acquisition was filled with uncertainty in Cape Town. The World Health Organization (WHO) had issued a statement that women at high risk of HIV should be encouraged to use condoms alongside the hormonal contraceptive known as Depo-Provera. The uncertainty about Depo’s effect on HIV risk stems from conflicting and unclear observational data. Only a randomized controlled trial can resolve the question, “Do hormonal contraceptives like Depo-Provera increase the risk of HIV acquisition?” When ECHO was initiated advocates called for a four-arm trial but with not enough resources ECHO kicked off as a three-arm trial of Depo-Provera (or depo), a copper intrauterine device (IUD) and Jadelle (an implant). NET-EN, another injectable and potential fourth arm of the trial, was omitted from ECHO. What do we do in the meantime as we wait for ECHO results?

For me, the human rights issues are striking. Women considering Depo-Provera need accessible and complete information about this issue so they can make informed decisions. WHO is slow to respond to additional data about Depo's potential for increasing risk and inconsistent in continued engagement with local communities in Africa.

Civil society organizations and advocates will continue to push for a mix of birth control methods and the funding to support it in all settings, including rural areas so that women will have a range of options to choose from. Engagement and consultations between WHO and advocates must continue. Conversations should be brought to communities; leaving no one behind. Most importantly, the conversation should be taken to the broader movement for sexual and reproductive health and rights (SRHR). All stakeholders should work and collaborate with sites that deliver reproductive health services, keeping PrEP access a high priority along with other SRHR services.

Sitting in a Chicago conference center, R4P’s home this year, I heard calls for innovation, with more and better tools that women can use and control. And leaders were calling for engagement across the biomedical frontier. “We need to work towards an HIV cure,” urged Ambassador Deborah Birx of PEPFAR, while also calling for the delivery and implementation of what we have. In short, Birx said we need to integrate programs, disseminate science, and engage communities meaningfully to shape the agenda for research and implementation.

Although there’s a lot that needs to be done to make Amb. Birx’s hope a reality, I’m more hopeful after Chicago than I was after Cape Town. Science continues to deliver – now it’s time for us as advocates, service providers, governments and funders to effectively implement what’s been delivered to us as we work towards new possibilities for tomorrow.