This week a World Health Organization-commissioned study on the relationship between hormonal contraception and HIV risk was released. The study, published in the journal AIDS, is the third WHO-supported “systematic review” of the available data regarding the relationship between hormonal contraceptive methods and HIV acquisition in HIV-negative women. As with the previous systematic reviews, the new paper reports the results of a careful analysis of existing observational data related to rates of HIV in women using hormonal methods, which include oral contraceptives, injectable methods and implants.

The two previous systematic reviews concluded that there was no association between oral contraceptive pills and HIV risk. They also reported that there were mixed data regarding the injectable, progestin-only method known as DMPA or Depo-Provera. Some studies suggested that there was an increased risk, others did not. The new systematic review does not provide a definitive answer, but it states that the data to date, “strengthen concerns about DMPA.” For a field that has long dwelt in the completely gray area of “maybe or maybe not”, this is indeed a shift. The WHO has reacted accordingly, with a statement released shortly after the publication announcing that an expert review group will be convened to review the new data to determine whether a change in WHO guidance is warranted.

AVAC, along with the International Community of Women Living with HIV Eastern Africa (ICWEA), convenes a civil society advocacy working group made up of African women and their allies, who closely follow this issue. The working group will host a webinar with study authors and other resource people in the coming weeks. If you’re not already a subscriber, please be sure to sign up to receive our Advocates’ Network update for the latest information. In the meantime, here is a brief Q&A to help orient new and veteran advocates on these latest developments.

What is a systematic review?

A “systematic review” involves gathering all available evidence on an issue, evaluating the quality of that evidence and summarizing it to provide a reliable overview of knowledge on a topic. Such reviews are often conducted by teams of independent researchers who agree on a specific set of criteria for searching for evidence and for defining its quality. This was the approach used in the recently published paper.

Why are systematic reviews useful?

The systematic search process used to gather all available data is designed to find all relevant evidence in a transparent and replicable manner. This minimizes chances of missing data or choosing data in a biased way. Systematic reviews can summarize large amounts of information. This can be helpful to stakeholders who may not be reading all of the studies on a given topic and/or may not be able to reconcile contradictory findings. Since systematic reviews take all the evidence together, they can help provide a clearer picture.

What are limitations of systematic reviews?

Systematic reviews are only as good as the data that they are consolidating, evaluating and synthesizing. On this specific issue, the available data on questions about hormonal contraception and HIV risk all come from studies that were designed to answer other questions. (For example, the VOICE HIV prevention trial of oral and topical PrEP gathered information on women’s contraceptive use and also on their rates of acquiring HIV. Understanding how contraception may have impacted HIV risk was not a primary aim of the VOICE trial.) Information gathered from studies designed to answer other questions is termed “observational data”. All observational data can have confounding factors that may skew the findings. For studies around the HC-HIV question, there is the possibility that women who choose one method might be significantly different from women who choose another method. There might be something about women who choose to use a specific method that affects their risk of HIV, rather than the contraceptive method itself. Perhaps women using a specific method are also more likely to use condoms, or more likely to have multiple partners. Observational data cannot control for this type of confounding factor. That’s why a randomized trial—in which women agree to be randomly assigned a method rather than choosing—is thought to be the route to clarity. (For more on such a trial see below.)

Which data did the latest systematic review evaluate?

The new systematic review identified 10 new reports reports released since the last review was published in 2014. Five of these reports were considered “unlikely to inform the primary question.” The other five, along with nine from the previous review, were considered “informative but with important limitations.” These were used as the focus for the new analysis. Two of the newly included studies compared risk of HIV in women using different types of hormonal contraception. This is the first time that such head-to-head comparisons of different types of hormonal contraception have been available and included in a systematic review. (A total of 31 studies were included in the overall systematic review, but some of these were “unlikely to inform the primary question.”)

What are the key findings?

Data for oral contraceptive pills, the injectable NET-EN and levonorgestrel implants do not suggest an association with HIV acquisition, though data for implants are limited. Right now, there’s no evidence that other hormonal methods (ones that do not rely on DMPA) impact HIV risk. But for implants there’s just not a lot of information available.

The new, higher-quality data on DMPA, added to previous information, increase concerns about DMPA and HIV acquisition in women. The cumulative data strengthen concerns that DMPA might be increasing women’s HIV risk. It’s not definite, but it’s looking more likely than it did the last time the data were reviewed.

This is the first time a systematic review has offered an estimate of the possible impact of DMPA on HIV risk.

The study states that, “Recent analyses contradict the hypothesis that differential over-reporting of condom use by HC users explains observed associations between HC use and HIV infection in some studies. The argument that women who use DMPA also use fewer condoms than women who choose other methods has been suggested to explain previous data. It’s important to note that this review directly addresses this argument and supports research suggesting that it is not valid.

What happens now?

WHO has said that it “will convene an expert review group later in 2016” and “assess whether current WHO guidance needs to change in the light of a new review of data.” It’s important to note that even if the guidance did change, DMPA would still be a key method to make available to women. It is discrete, long-acting and a good choice for women living with HIV, since ART may reduce the efficacy of contraceptive implants.

What will happen with the ECHO trial—the ongoing randomized trial evaluating contraception and HIV risk?

The ongoing ECHO trial is evaluating HIV risk among women who agree to be randomly assigned to receive one of three contraceptive methods: the copper intrauterine device (IUD), the Jadelle implant or DMPA. All of the women receive a standard HIV prevention package—condoms, behavior-change counseling, and STI screening and treatment. Protocols for providing PrEP are being developed on a site-by-site basis. About 1,000 women of the estimated 7,800 who will participate in the trial have been enrolled to date. The trial is being conducted at 12 sites in four countries: Kenya, South Africa, Swaziland and Zambia. ECHO investigators have indicated that the systematic review will be shared with the trial’s independent Data Safety and Monitoring Board, which will make a recommendation about what, if anything, might change based on the new data.

What’s the advocacy agenda?

It’s still in formation, as the data are new. The full paper is not yet freely available and much discussion needs to happen in the East and Southern African countries where this question is most relevant. But, here are some preliminary thoughts:

Women most directly impacted by this question must have a chance to participate meaningfully and directly in discussions around messaging and next steps. This includes women in East and Southern African countries where both HIV risk and DMPA use are high. It also includes Black women and other women of color in the United States who are disproportionately at risk of HIV and far more likely to be prescribed DMPA than white women. WHO should gather these women for a meeting with the review’s co-authors. This meeting should inform the “expert review group” slated to meet later in 2016. There should be civil society participants who attend the expert review group meeting and have an opportunity to make a presentation as part of the official program.

Method mix has to become an even more urgent priority. Method mix is the term the contraceptive field uses to describe having a range of contraceptive options available for women at the clinics and programs where they access services. With heightened concern regarding DMPA, it is even more important for women to have access to a range of choices. This must be a priority for all major initiatives working toward reproductive health and HIV integration, adolescent sexual and reproductive health and HIV prevention in East and Southern Africa. The scenario many advocates would like to see is one in which DMPA remains an option even as other choices become widely and easily available including injectables like NET-EN, implants and the IUD. There is much to be learned about which methods women want at which stages of their lives.

Put PrEP in the mix. If women taking DMPA are supported with access to daily oral PrEP—i.e., they can get the meds, take them regularly, etc.—then the question of HIV risk is, if not moot, redefined. Oral PrEP is the only woman-controlled method that isn’t used at the time of sex that is available today. Access is expanding. These data should accelerate that work.

WHO, UNAIDS, PEPFAR and FP2020 should, with urgency, fund the revision and dissemination of the communications framework on HC-HIV to reflect the new data. This communications framework is the only tool available for immediate use to help policy makers, service providers and others act on the new findings. It could be rapidly updated to reflect the latest information and distributed to all of the countries where this issue is relevant. In the absence of strategic communications, the reports of “increased concern” will leave women, providers and policy makers confused and perhaps misinformed.

Groups focused on sexual and reproductive health and rights should join with HIV-focused advocates for an integrated advocacy agenda. This is not solely an HIV issue, though many of the advocates following it to date have been more closely aligned with HIV-related issues. The systematic review should trigger better integration of advocacy, innovation and collaboration between HIV and SRHR communities.

The famed ‘60s-era American band, the Grateful Dead, once sang, “Oh well, a touch of gray kinda suits you anyway.” That’s certainly true when it comes to aging… but when it comes to the “gray area” of uncertainty about matters of individual and public health, that touch of gray is harder to live with. Nevertheless, that’s where African women and their allies have been for many years—missing a clear answer about whether there is an association between the use of DMPA/Depo-Provera and increased risk of acquiring HIV. The new systematic review doesn’t make things black and white, but it does move the discussion forward. Anything less than immediate, proactive action is unacceptable.

AVAC was shocked to learn of the attack by the Uganda police force on the LGBTI community in Uganda during their peaceful Pride celebration. Reports that police beat and assaulted Ugandan citizens who were peacefully celebrating Pride is both troubling and completely unacceptable. This kind of attack poses public health implications; studies show that when gay people face discrimination—including abuse and attacks like this—they are less likely to seek HIV testing, prevention and treatment services.

In 2012, there were 1.5 million people living with HIV in Uganda and 140,000 new HIV infections. Globally, gay men are around thirteen times more likely to become infected with HIV than the general population. Safe access to HIV prevention and treatment services for all people, everywhere, is a matter of urgency.

AVAC stands in solidarity with our friends and partners in Uganda and elsewhere who face stigma and discrimination. And we join with allies demanding that the Uganda authorities investigate this unlawful arrest. These and other incidents of discrimination and repression should be treated with gravity.

We urge the government of Uganda, and all governments around the world, to protect the human rights of lesbian, gay, bi-sexual and transgender people. Until this is done, we will not be truly able to end the AIDS epidemic.

Happy August! Every International AIDS Conference leaves a paper trail. If you were in Durban for the meeting that ended nearly two weeks ago, you’re probably still finding pamphlets, stickers and business cards in the corners of your luggage. And if you stayed home, you’re probably wondering how to wade through the piles of publications—maybe not paper, but plenty of links to PDF documents. Here at AVAC, we’d like to help—with a quick tour of AVAC Report 2016: Big Data, Real People—and a look at the Durban sessions that related to its core messages.

Data measure progress to targets. But what’s counted matters. In Big Data, Real People, AVAC argues that for too long, prevention targets have counted things that weren’t linked to impact. HIV testing, which is not in and of itself protective against HIV, is one example. “People reached” with billboards or other messages is another. And we’d add referrals for services—with no accounting for whether those referrals led to linkages. For new cases of HIV to begin to go down, the targets need to be sharper, and the investment in prevention needs to increase to match. In Durban, a panel on targets helped frame what this could or should look like.

The “youth bulge” was also a recurring theme throughout the conference. There are far more young people alive today than there were at the start of the epidemic—especially in sub-Saharan Africa. This means that even if current rates of new cases of HIV don’t go up, the absolute numbers of young people diagnosed with HIV every year will increase. That we haven’t seen an enormous jump so far says that some things may be working—but more is definitely needed. AVAC Report takes a close look at what needs to happen to ensure that the surge of activity focused on adolescent girls and young women in sub-Saharan Africa leads to impact. The Report includes graphics on the “youth bulge”, the data gaps in young women that must be filled, and the cycle of transmission in South Africa. To see how these came up at the conference, check out AVAC’s Micheal Ighodaro’s remarkable plenary, and this session on the cycle of transmission that links young women and older men in South Africa.

Then there’s the matter of ending AIDS. Is it possible? Is it even the right thing to be talking about given that funding for global AIDS actually declined in 2015? These questions came up throughout the conference and are also tackled in the Report. For AVAC’s part, there are some critical steps that need to be taken for this to be a viable goal: closing the funding gap, adopting a vastly improved approach to collecting and acting on prevention data, and keeping a committed focus on research for an AIDS vaccine and other long-term solutions.

We hope you’ll visit the AVAC Report 2016 page, where you can find downloadable graphics and PDFs of our Executive Summary and the full Report. We’ll be mailing out hard copies in the coming month. If you’d like one, or many, please let us know!

We didn’t know how it would go.

We knew it would take a lot of work—and even more frustration. We also knew it was an exciting new venture, especially in a time of headlines like, “Biomedical Prevention is Experiencing a New Frontier”. Our goal was for the first ever Research Literacy Networking Zone (RLNZ), set up in the Global Village at the 21st International AIDS Conference in Durban (AIDS 2016), to be place where conference goers and community members could unpack the science and the status of HIV prevention, treatment, and cure research. We hoped people would come, we hoped it would be a valuable service for attendees and mostly we hoped it would broaden awareness and support around these fields.

We never anticipated that our hopes would be exceeded—through five days of constant action in the Global Village, the buzz at the RLNZ was nearly relentless.

AVAC and partners IRMA, NHVMAS, TAG, WACI Health, and WRHI worked together to make the Zone come to life. We spent five days on our feet distributing materials, playing educational games, running sessions, and mostly, talking to people. We saw formal sessions with dedicated speakers draw participants who filled the space and spilled into the aisle-way around the Zone. We saw the impact of having a researcher sit in a circle, rather than stand at a podium, to speak with community members. We saw the power of working one-on-one to make sense of data from an infographic about the effectiveness of PrEP for women. We saw what can happen when someone from Philadelphia sits on a couch with someone from Nairobi and talks about vaccine research in their respective countries. It’s hard to capture in words the richness we experienced, but here are some highlights of what we saw, heard, and felt in the Zone.

Monday: Today’s highlight came when Nobel Laureate Françoise Barre-Sinoussi made a surprise appearance at the session Understanding HIV Cure Research. She took the microphone, ignored the podium and warmly addressed the large group attending the session. She urged them to find meaningful ways to explain “cure” to their communities. Much of the session’s discussion focused on the meaning of “functional cure”, “remission” and “sterilizing cure”, highlighting the importance of being able to explain these terms in lay language. Many walked away with a new appreciation for the challenges of cure research and the many steps along this path.

Tuesday: Another leader in the AIDS world visited the Zone today—Emilio Emini, the Director of HIV at the Bill & Melinda Gates Foundation. Dr. Emini has a long and distinguished career in HIV research and may have been the perfect person to sit with community members and discuss research issues across the board. Dr. Emini caught our attention at this session when he said the research field will be taking a page from colleagues working on the contraceptives pipeline. Like them, he wants to roll out what we have, as imperfect as it is, while we urgently seek new options that address the needs of end-users. As various HIV prevention research fields move into later phase trials and potential rollout, this is a space to watch!

Wednesday: One of our highlights today was a packed session about advancing PrEP advocacy. We heard loud and clear in this session, and all week, that people know PrEP. This is a marked difference from even two years ago at the International AIDS Conference in Melbourne, highlighting the rapid expansion and success of PrEP advocacy at community, policy, healthcare and funding levels across the globe.

Thursday: Preventive vaccines were on the table at the Ask the Researchers session. Community members heard in lay language about this exciting time for multiple vaccine concepts and movement into efficacy trials. But one highlight came outside the day’s formal sessions. Foot traffic had died down a bit as Thursday was the last full day of the Global Village. During a quieter moment, three women arrived at the Zone wanting to play our “Test Your Research Literacy” game. They may have been mostly motivated to win a T-shirt for answering one of the questions from the hard column, but when they didn’t quite have the answers, they combed through the fact sheets and other tools available in the Zone until they found the info they needed. Prizes well-deserved!

Friday: Exhausted but inspired, we broke down the Zone. Looking around, we reflected on this packed week, which our co-organizers, advocacy partners, visitors, and research representatives across the board agreed in force was a massive success. Maybe it was the plants and their welcoming green, I thought, that invited so many people in and made the Zone a comfortable space. Maybe it was the striking posters from Chicago’s PrEP 4 Love campaign. The moment these posters went up in the Zone, people stopped, stared, said things like “Those are beautiful,” and “Thank you for including people with real bodies,” and then asked, “What is the Research Literacy Zone all about?”

I wasn’t sure, but something worked.

A group of advocates lingered on the couches as we packed up. I stopped and nodded to one, a 2016 AVAC Advocacy Fellow, who was taking his final opportunity to charge his phone at our charging station. I said, “You are going to miss this place.” He responded, “This is our home.” I realized then that the most important ingredient in all of this was the people. The people with their questions, their hunger to learn, their desire to debate, and their ability—in this space—to interact and engage in research. Just as in research, it was the people themselves that were the most important metric of success of the Research Literacy Networking Zone.

This was a first for an AIDS conference—but it surely can’t be the last.

See you at the next Zone!

Throughout the week AVAC didn’t try to be comprehensive, or even objective. Our priority was to be alert, curious, sometimes critical and always committed to prevention. Observations from advocates and scientists brought exciting and sobering news from the frontlines, of which there are many, about what works and what doesn’t. Take a look at our conference diaries for what we saw, what we heard, what we learned, and how we stood up.

Reflections from Durban – Day 6 at AIDS 2016

After all the presentations, talking, and advocating, success depends less on a few days in Durban and more on a reimagined AIDS response—one that brings urgency to the major gaps in treatment, prevention, funding and human rights that we’ve just explored in so much depth for a few concentrated days in Durban. So rest up. We’ve got lots of work to do.

Respect the Data, Respect the People – Day 5 at AIDS 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.

I Bleed, I Rise – Day 4 AIDS 2016

Hello again! It’s day four of Durban week. Some folks may be starting to feel saturated with talk and facts. You may have missed lunch or a session you wanted to get to. Maybe, just maybe, you feel a little short-tempered with the conference hub-bub or the problems of the world, but a source of fresh energy coalesced on today with a galvanizing message: I bleed, I rise.

The Vagina Dialogues – Day 3 at AIDS 2016

At its best, today’s dialogue was led by and for women and centered on rights, realities and engaged discussion on the whole body, from head to toe and heart to mind. In some fascinating sessions, the vagina seized center stage and all but lost the head and heart that go with it. Today, in our update, we’ll try to put the pieces together and so, of course, the theme is: The Vagina Dialogues.

Long Waits and Long Queues: Hurry Up! – Day 2 at AIDS 2016

It’s Day 2 of the daily updates… and the conference has just barely begun with the official opening on Monday evening. Not everything is in motion, though. Long queues to undergo security screening are keeping people standing in place or, at best, shuffling along. The security lines do have an upside though… they’ve provided our theme for today: Hurry up!

Magical Thinking and Surge Pricing – Day 1 at AIDS 2016

The streets in and around the International Conference Center in Durban are thronged with badge-wearing delegates, the Uber taxi prices are surging, and there are already piles of publications scattered across the floor of some of the session rooms where the pre-conferences have taken place. And all this means that there are already things to report, even though the official meeting only starts tomorrow.

More on AIDS 2016

For even more about AIDS 2016 and additional resources, visit www.avac.org/aids2016.

It’s the end of the week and the last of the Durban diary entries from the AVAC team. Bags are bursting with materials, goodbyes are rushed and coffee is extra strong after a long and sleep-deprived week. As AIDS 2016 draws to a close we reflect on the week and reimagine a new way forward.

Reflecting on the New

At AIDS 2016 we found ourselves in a new zone—the Research Literacy Networking Zone, to be specific. AVAC and partners, IRMA, NHVMAS, TAG, WACI Health and WRHI, were on their feet for five days distributing materials, running sessions, playing educational games, and most importantly, translate lots of questions about HIV research into understandable language. Everyone came to the Zone, including Nobel Laureate Françoise Barré-Sinoussi and Emilio Emini, the Director of HIV at The Bill and Melinda Gates Foundation, and a steady stream of conference goers and Durban community members. Next week look out for a full update with a montage of what we saw and heard at the Zone!

Reflecting on the Community Voices

The Truth Booth, an impromptu recording studio booth at the Global Village, and the What’sUpHIV blog amplified the voices of diverse delegates who took on a range of vital issues. At the top of the list; a global effort to defeat HIV should be grounded in perspectives offered by affected communities, key populations, young people, girls and young women—but these perspectives are woefully neglected. We heard from these missing voices, about the barriers they confront, and the role of activism as the conference returned to Durban.

Hear the voices from the Truth Booth.

Read news and opinions from advocates and journalists at What’sUpHIV including:

• AVAC Fellow Ntombozuko Kraai’s question about community on who is community and who speaks for community
• AVAC Fellow Lepheana Mosooane’s thoughts on big targets, corruption and reaching the people who need interventions

Dispatches from Durban

If you missed any of our updates from the week, check them out below!

• Respect the Data, Respect the People: Day 5 at AIDS 2016
• I Bleed, I Rise: Day 4 at AIDS 2016
• The Vagina Dialogues: Day 3 at AIDS 2016
• Long Waits and Long Queues: Hurry Up! — Day 2 at AIDS 2016
• Magical Thinking and Surge Pricing: AIDS 2016 update—Day 1

Rest and Reimagine

We think of Durban 2000 as a watershed, but the conference was only the beginning. It was the action that came next that made all the difference.

After all the presentations, talking, and advocating, success depends less on a few days in Durban and more on a reimagined AIDS response—one that brings urgency to the major gaps in treatment, prevention, funding and human rights that we’ve just explored in so much depth for a few concentrated days in Durban. So rest up. We’ve got lots of work to do.

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 www.aidsmap.com/aids2016, 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!

Hello again! It’s day four of Durban week. Some folks may be starting to feel saturated with talk and facts. You may have missed lunch or a session you wanted to get to. Maybe, just maybe, you feel a little short-tempered with the conference hub-bub or the problems of the world, but a source of fresh energy coalesced on today with a galvanizing message: I bleed, I rise.

• Day Three Recap
• Looking Ahead to Thursday

I bleed, part 1

That’s one of the signs that young activists held up during a powerful demonstration during the morning plenary session. The protest, directed at the South African government, involved singing, signs and a strong call for South Africa to provide condoms and sanitary napkins in all of its schools. That such an actionable demand is being made in 2016 is a reminder of both the work that remains, and the impact of simple things that can be solved quickly if people in power heed the voices of young activists.

I rise, part 1

AVAC’s own Micheal Ighodaro was among the plenary speakers on the stage when the action took place and the only speaker to express solidarity—rising with the protesters and holding a sign over his head. The reward for this action? An IAC employee raced over to ask him if he could hurry the protest along. Micheal, up on his feet with the other young people, did not comply.

I bleed, part 2

“The people who talk about leaving no one behind ask people like me to be polite, to stay calm, to grieve quietly, while my brothers and sisters are dying or imprisoned. Our bodies are seen as an abomination or deserving of HIV—and you still want to know the source of my rage. I cannot decorate this pain for you, I cannot make a beautiful homage, and I cannot invoke hope and prayers. I cannot smile. I need to see action now, today…” Micheal Ighodaro, Plenary Speech, July 20, International AIDS Conference 2016

These words need no additional explanation. We have posted the complete text of Micheal’s speech here and we urge those who weren’t there in person to watch the webcast when it becomes available.

Later in the day, Micheal and Nigerian comrades held a unique session in the Global Village that combined dance and discussion to promote the right of African gay men, other men who have sex with men and transwomen to access PrEP. The session opened with a video memorial to the 49 people killed in the mass shooting at Pulse, an LGBT nightclub in Orlando, Florida. The Global Village truly lived up to its name as LGBT people and their allies from every corner of the world shared in a moment of mourning for this loss.

I rise, part 2

Micheal’s plenary drew a standing ovation. We were proud to be there.

Prevention advocacy was also on the rise in amazing sessions across the conference today including a session on women’s prevention, moderated by AVAC’s Manju Chatani-Gada. Courageous women raised their voices to share their experiences using the dapivirine vaginal ring in the ASPIRE study in South Africa, using PrEP as part of the SAPPH-IRe demo study in Zimbabwe and using PrEP outside research settings in South Africa. They also answered questions about accessing it through the private sector. Women-controlled prevention is too good and important not to share in detail.

“I miss my ring,” Thobile—one of the participants from the ASPIRE study—said emphatically when asked if she would be joining the open-label study (HOPE) that has just begun inviting back participants from the study. She went on to say she did not feel it when she was having sex, and said she felt good wearing it. Mrs. Shabalala talked about her husband’s support and his involvement in her decision to join and stay in the trial. He waved at us from the audience and invited questions.

Bathabile, a sex worker, who had been part of the SAPPH-Ire demo study, said many sex workers did not take up PrEP initially “because they did not really understand what it was all about. The informed consent form was confusing and I had to ask people to translate it for me. But then I got it.” She talked about the stigma sex workers experience, and her initial distrust of the intent of the study. But she wanted to try it, she said, and has benefited from ongoing support.

Another woman at the session, Buhle, said she “recently rediscovered her sexual freedom as a young, African women on PrEP”. She spoke about her experience educating her physician about PrEP. Her doctor had no idea what PrEP was, confusing it for PEP. Buhle went onto the CDC website in her doctor’s office and they walked through the site together. She said her physician warned her repeatedly that the side effects would be too awful to bear. Buhle took it anyway. Six months later, she says adherence is easy. Now Buhle wants to see the use of PrEP normalized so that her friends will accept it too, and get the same benefits she does. “Make it funky to use,” she said. That’s what would work for her friends.

We need to hear more of this and all the time. It’s the only way to move beyond the numbers and the PowerPoints and reach real people in the real world.

I rise, part 3

As an antidote to any creeping impatience during tomorrow’s conference, we offer this poem by the great African-American poet Maya Angelou.

Still I Rise

Maya Angelou

And still I rise
You may write me down in history
With your bitter, twisted lies,
You may tread me in the very dirt
But still, like dust, I’ll rise.

Does my sassiness upset you?
Why are you beset with gloom?
‘Cause I walk like I’ve got oil wells
Pumping in my living room.

Out of the huts of history’s shame
I rise
Up from a past that’s rooted in pain
I rise
I’m a black ocean, leaping and wide,
Welling and swelling I bear in the tide.
Leaving behind nights of terror and fear
I rise
Into a daybreak that’s wondrously clear
I rise
Bringing the gifts that my ancestors gave,
I am the dream and the hope of the slave.
I rise
I rise
I rise.

Thursday at the Research Literacy Networking Zone

In addition to having a Help Desk (have a question about prevention research or looking for a resource—stop in!) and a comfortable space to rest your feet, come check out all the programming in the RLNZ (Global Village, Booth 606). See Thursday’s schedule below:

• 11:00 – 12:30 – What is Health Research and Development and Why Should Advocates Advocate for Increased Funding for Health R&D (PATH)
• 12:45 – 13:45 – How is that Rectal Revolution Coming? Update on Global Rectal Microbicide Research (IRMA)
• 14:15 – 15:15 – Engage Yourself: Responsible and Responsive Science (AIGHD)
• 15:30 – 16:30 – Ask the Researchers: Vaccine Research (HVTN)
• 17:00 – 18:00 – The PROUD Study: A video documentary and discussion (Nicholas Feustel, georgetown media)

A Few Sessions We’ve Starred

See below for a highly selective list of sessions for all the data geeks out there!

• 11:00 – 12:30 – Financing the Response to HIV: Show Us the Money, Session Room 1
• 11:00 – 12:30 – Targeting Reservoirs for Cure, Session Room 7
• 11:00 – 12:30 – Treat Early and Stay Suppressed, Session Room 12
• 14:30 – 15:30 – Using Funding Data to Advocate for Global and Domestic Resources in the Critical Push Towards the End of AIDS, Global Village Room 2
• 14:30 – 16:00 – The Use of Economic Interventions to Promote HIV Prevention and Treatment Objectives, Session Room 12
• 14:30 – 16:00 – The Future of Chemoprophylaxis: New Concepts, Session Room 6

Follow along in real-time on Twitter, and look for the next update on our blog tomorrow!