Respect the Data, Respect the People: Day 5 at AIDS 2016

July 21, 2016

We’ve rounded the corner here in Durban. With just one full day to go, we’re drilling down into the foundation of the global effort to defeat HIV, which rests on two fundamental imperatives: Respect the Data, Respect the People.

Respect the Data, Part 1

We gathered at 7am this morning for a satellite session on hormonal contraception (HC) and HIV, put together by the WHO’s Reproductive Health and Research Department. The program provided an update on ECHO, a randomized trial looking at the impact of three contraceptive methods (the copper IUD, Jadelle implant, and the injectable progestogen-only method DMPA or Depo Provera) on HIV risk. The main event, though, was a presentation by Chelsea Polis, a senior research scientist at the Guttmacher Institute. Polis presented results of the latest systematic review of observational data regarding contraceptive use and HIV risk. Systematic reviews, explained in depth here, look at all existing data on a topic and apply strict criteria to identify high-quality studies. These high-quality studies are then examined as a group to see what sorts of conclusions they support.

Two prior systematic reviews of the data on hormonal contraception and HIV concluded that some studies show evidence that DMPA increased women’s risk of acquiring HIV, while others do not. There was, in short, official uncertainty. The latest systematic review has a different conclusion—an association exists between DMPA and heightened risk. Dr. Polis said, “Newer data are increasingly concerning and converging around HR 1.2-1.6.” In lay-person terms, “1.2-1.6” means that an HIV-negative woman using DMPA would have a 20–60 percent increased risk of acquiring HIV compared to an identical HIV-negative woman who was not using DMPA. This is the first time that a systematic review on DMPA has moved out of the realm of uncertainty and taken the additional step of estimating the risk of infection. (It’s important to remember that overall risk of HIV for many women is quite low and that there are only some communities—largely in East and Southern Africa—where DMPA use and HIV prevalence are both high enough to warrant concern. In addition, in a companion systematic review of hormonal contraception and ART, DMPA seems to have no negative interactions with ART and may be one of the better contraceptive choices for women living with HIV.)

What’s next? AVAC and collaborators will push WHO and other stakeholders to respect the data. Partners like the International Community of Women Living with HIV-Eastern Africa (ICW-EA) will be front and center as the group that anchors collective action in Africa on hormonal contraceptives, organized through the HC-HIV Advocacy Working Group.

Current WHO guidance is based on the previous systematic reviews. Women at risk of HIV who choose DMPA should no longer be counseled about uncertainty. Now counseling must reference the new findings of an increased risk associated with DMPA. As we, and others, have said for years, whenever and wherever women receive this kind of counseling, alternative, comparable and long-acting methods must also be available for them to choose. This range of choices, also known as contraceptive method mix, is a must-have. Now more than ever.

Respect the People, Part 1

Many African advocates follow the HC-HIV question closely—attending WHO consultations, participating in the ECHO trial’s Global Community Advisory Board, and educating and informing their own communities. These advocates expressed surprise to learn the WHO satellite program results were released without a single panelist from civil society. This led to an eleventh-hour invitation for civil society to attend—which we did, in force. A mobilizing flyer called for advocates to “make some noise”. We have to assume that this flyer is what caused the session organizers to include a slide we haven’t seen anywhere else at the conference reminding participants to show “respect”. This slide was nowhere in evidence at yesterday’s plenary when Dr. Aaron Motsolaedi was interrupted. We heartily agree that everyone in the HIV community has a right to be heard, and that right means all stakeholders should receive timely invitations to share their views, informed opinions and valued input. A slide like this isn’t the way to create that environment. We look forward to WHO’s proactive engagement with African women who are impacted by this issue and working on it with urgency, all the more so now that powerful new data is reshaping what we know about the risks.

Respect the Data, Part 2

The single most important data point from AIDS 2016 is undoubtedly from the funding analysis that shows an unprecedented decline in resources for global AIDS. Representing the work of the Resource Tracking for HIV Prevention R&D Working Group, AVAC has provided preliminary findings to this critical field of inquiry in an oral abstract. Our findings show investment in biomedical HIV prevention research and development has declined significantly, from US$1.25 billion in 2014 to US$1.18 billion in 2015. Funding is down in nearly every sector (except industry) and for almost every prevention option. Resource tracking holds great value for advocates. AVAC also collaborated with FCAA, TAG, MSMGF, CEGAA Health GAP staffer, former AVAC fellow and superstar Maureen Milanga on a workshop titled Advocates Guide to Resource Tracking. Panelists shared their diverse projects on resource tracking, and Maureen stunned with her incredibly insightful perspective as an advocate. She has found ways to use RT data to demand changes and accountability from government bodies. We put together a guide to resource tracking for all you activists looking to get into the RT game!

Respect the People, Part 2

Cure research is incredibly complex. As a field of research it seeks to rid the body of HIV completely or send the remaining traces of virus into a perpetual state of inactivity—without ART. Doing this requires multi-stage protocols of potent products, some with intense side effects. Also, people who participate in cure studies usually stop ART regimens—exchanging proven strategies that preserve health and provide prevention benefits for partners in favor of experimental and unproven strategies. How should these trials be designed and conducted, and how should they engage participants and other stakeholders?

At a session today on Community Engagement in HIV Cure-related Research, AVAC’s Jessica Salzwedel provided a look at how to apply the Good Participatory Practices Guidelines for HIV Prevention Research. A key take-home from the session was that communicating concepts behind cure research, even the concept of cure itself, is complicated. A lot of work will need to go into translating all this for multiple communities and in multiple languages as cure trials roll out in more and more countries.

Respect the People and the Data

Today’s program also featured a tribute to Dr. Ward Cates, a tremendous scientist, advocate and friend to many of us in the HIV prevention arena. For everyone who knew him—and everyone who touched the projects he worked on—Cates showed us what it means to deeply respect people and data. AVAC’s annual report, Big Data, Real People, is dedicated to Ward. We remain inspired by him, and miss him every day.

Friday at the Conference

And if you’re still keen on more coverage after this update, head straight to, the official scientific news reporter from the conference. The aidsmap team has been churning out great articles covering the myriad studies presented here.

The Global Village finished up its fun and dynamic programming today, but there are still some intriguing sessions on tap for Friday. And don’t miss the closing session where the rapporteurs do the party trick of the week—distill a five-day conference into a 90-minute session.

  • 11:00 – 12:30 – Why Do We Need Prevention Justice in the Era of Bio-medical Interventions?, Session Room 13
  • 11:00 – 12:30 – Prepped for PrEP, Session Room 1
  • 11:00 – 12:30 – HIV Prevention in Women, Adolescents and Girls, Session Room 11
  • 14:15 – 17:15 – Rapporteur & Closing Session, Session Room 1

Keep following on social media and stay tuned for a final wrap-up tomorrow!