Press Release

Data gaps hinder global efforts to reduce HIV infections, AVAC report warns; improved data collection and reporting needed to meet looming global AIDS targets

Contacts

Mitchell Warren, [email protected], +1-914-661-1536
Kay Marshall, [email protected], +1-347-249-6375

In a report issued today, AVAC warned that major gaps in global HIV/AIDS data stand in the way of delivering HIV prevention advances to millions of people who need them most. The report identifies several critical weaknesses of today’s HIV prevention data collection and monitoring systems and offers a concrete roadmap for closing these gaps. The report, Big Data, Real People, was issued ahead of next week’s International AIDS Conference in Durban, South Africa (July 18-22), where advocates will demand action to speed HIV prevention research and delivery.

“In an era in which big data are expected to improve essentially every part of our lives, there’s no excuse for HIV prevention data systems to be so uneven, incomplete and inefficient,” said Mitchell Warren, AVAC’s executive director. “To have any chance of ending the epidemic by 2030, we need to be collecting and accounting for every bit of useful information from every person living with or at risk for HIV.”

The need for improved HIV prevention data systems is particularly pressing given the UNAIDS “fast-track” goal to reduce new annual diagnoses to no more than 500,000 by 2020. Earlier this month, UNAIDS reported that the number of new HIV infections has remained near 2 million per year for the past decade.

Report identifies specific HIV data gaps, recommends solutions

AVAC’s report focuses on four critical data gaps that must be addressed to effectively prioritize, target and measure the impact of efforts to develop and deliver HIV prevention advances.

Specifically, today’s HIV prevention data are:

  • Not sufficiently broken down by age, gender, income status, key population status and other vital categories
  • Missing or incomplete for key populations most in need of prevention, including adolescent girls and young women, men who have sex with men, transgender women, and others
  • Not tied to useful HIV prevention metrics and indicators, so that it is impossible to know whether prevention programs are actually averting infections and improving health
  • Not effectively informing the HIV prevention research agenda

To overcome these weaknesses, the report outlines three critical strategies that should be pursued most urgently:

1. Standardize and systemize data collection and reporting for HIV prevention

Understand, measure and report on the risk level of people testing HIV-negative; create and measure linkages to evidence-based prevention for people at substantial risk; and use a standardized “Prevention Data Dashboard” to continually evaluate progress. Such dashboards would consolidate and arrange available data to illuminate critical prevention gaps and help the global community, governments and funders better conceptualize their HIV prevention programming and evaluation. AVAC’s report provides a model dashboard for decision-makers to adopt.

2. Improve use of data for adolescent girls and young women

Ensure that a growing volume of available data can be applied in a meaningful way. As a first step, funders, implementers and governments need to do a better job of defining and segmenting this population; map who is investing in what and where; put adolescent girls and young women in control of core aspects of the data-collection enterprise; and adopt gender-specific indicators tailored to girls and women.

3. Put research on the “fast-track” and countries at the center

Fit biomedical HIV prevention research into comprehensive prevention plans tied to national targets for incidence reduction. Countries and research institutions must invest time and resources in stakeholder engagement; ensure that research priorities are informed by epidemiological and other quality HIV data; and develop national research plans for meeting the prevention needs of specific, affected populations.

The new report and related resources, including downloadable graphics, are available now at www.avac.org/report2016.

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About AVAC: Founded in 1995, AVAC is a non-profit organization that uses education, policy analysis, advocacy and a network of global collaborations to accelerate the ethical development and global delivery of AIDS vaccines, male circumcision, microbicides, PrEP and other emerging HIV prevention options as part of a comprehensive response to the pandemic.

MPT Products in the Pipeline: Selected highlights

This table shows which MPTs are further along in testing for both sustained-release and on-demand products. Women will have different needs and preferences throughout their lives. An array of different types of products is key to meeting the varying needs of different women. Excerpted from the MPTs factsheet.

What Should the Next US President Do? Advice for Hillary and Donald.

On behalf of IFARA, thebodypro.com recently posted two videos. In the first, Jim Pickett, director of Prevention Advocacy and Gay Men’s Health at the AIDS Foundation of Chicago, spoke with Robert Grant, MD, MPH, Mike Cohen, MD, Ian McGowan, MD, PhD, FRCP, and Mitchell Warren about HIV prevention research presented at this year’s Conference on Retroviruses and Opportunistic Infections (CROI).

New prevention tools, such as a safe and effective vaginal ring and the prospect of long-acting injectable agents are exciting news, panelists agreed. However, these tools are only as good as their implementation — as is the case with already approved methods, such as oral pre-exposure prophylaxis (PrEP). This includes finding and effectively treating people living with HIV, because those with an undetectable viral load do not transmit the virus.

Panelists would advise the next US President to invest in long-term research, including the search for a vaccine, cure, fund open-label studies of the vaginal ring, and provide treatment and prevention services to as many people as possible — especially women and men of color.

Watch the video on thebodypro.com.

In the second video, AVAC Policy Director Kevin Fisher spoke with Steven Wakefield and Ntando Yola about the development of a vaccine for HIV.

Wakefield called antibody-mediated prevention “the next holy grail.” Trials of broadly neutralizing antibodies that are infused every two months will start enrollment across the globe by mid-year, he said. However, a potential vaccine is just one component in a set of HIV prevention methods. Yola described HIV prevention as “a track field where products are racing each other.” Communities pin their hopes on each new prevention modality, but the focus needs to be moved from specific methods to overall prevention science, he believes. To that end, the science behind vaccine research needs to be explained in a way that people in the community can understand.

This video is also available at thebodypro.com.

Introducing PrEP Facts: Women’s Sexuality and HIV Prevention

Faith Landsman works for the CFAR Research Facilitation Core at the UCLA HIV Research Study Volunteer Project.

If women in the US want to start PrEP right now, most often they have to ask for it directly. The question is, how do women get PrEP if we don’t know that a pill to help prevent HIV even exists? While Planned Parenthood is rolling out PrEP services throughout the US, healthcare providers rarely offer PrEP to women, and even then often only if women disclose that their partner is HIV-positive. In a study published in the journal Contraception, (2016 May;93(5):463-9) researchers found that among family planning providers surveyed, most have limited knowledge about HIV PrEP and HIV testing, and report lack of provider training as the main barrier to PrEP provision.

In the Facebook group “PrEP Facts: Rethinking HIV Prevention”, founded by Damon Jacobs in 2013, its over 14,000 members have been promoting PrEP education and advocacy worldwide. Members advocate for one another with under-informed physicians, insurance companies, health departments and in interpersonal relationships. However, the membership is overwhelmingly men who have sex with men. “PrEP Facts: Women’s Sexuality and HIV Prevention”, a spin-off of the original PrEP Facts group, intends to do the same for women looking to take control of their sexuality and health. We want to empower women to be able to say, “I’m taking control over my risk for HIV infection.”

Join the conversation at www.facebook.com/groups/PrEP4Women!

Not If, But When: Gay men gather in Jo-burg to plot PrEP access

It’s been 12 years since I first encountered the notion of PrEP, which was at the AIDS 2004 conference in Bangkok. Before activists trashed Gilead’s booth for alleged trial misconduct, I sat in a session listening to then-Family Health International (now FHI 360) describe its trial designed to see if daily oral tenofovir could prevent HIV in sex workers in Cambodia. I was intrigued by the idea but later on, after several of the PrEP trials were shut down in a swarm of controversy, I lost both hope and track of the trajectory of PrEP. Fast forward over a decade later and PrEP is poised to become a success story. This is why last week’s meeting of mostly gay African men devising advocacy plans for PrEP access felt long overdue, but also perfectly timed.

First of all, the meeting, which was spearheaded by a coalition of out, proud, gay African men from AMSHeR, AVAC, Desmond Tutu HIV Foundation and MSMGF, among others, fell right in the wake of the musician Prince’s death. The gender-bending legend broke all rules about what black men should be and took ownership of his own path. Likewise, the PrEP meeting of over 80 participants made history as the largest gathering of gay and MSM African men to demand PrEP for HIV prevention as part and parcel to achieving social justice.

Keletso Makofane (MSMGF and Anova Health) summarized the importance of PrEP when he opened the meeting by stating, “PrEP is overdue but supposed to be delivered by the very systems that are failing us.” He went on to explain that PrEP is necessary for gay men on the continent “because of its efficacy and prevention power and because of the excitement of having sex in a way we haven’t for 30 years.” He also asserted that PrEP could be used as a catalyst to improve HIV care and health services in general. This set the tone for the remainder of the meeting which mapped out how to bring PrEP to scale for gay and MSM communities in Africa.

It’s difficult to capture all that was shared in the three-day meeting but below are some recurring themes.

One of the agreed-upon tactics was to ally with other “key populations”—those over-burdened and underserved communities—so that the push for PrEP for gay men is embedded within the demand for PrEP for all those at substantial risk. This would help avoid gay “exceptionalism” of which there are already reported rumblings.

Convincing national governments that PrEP for MSM would not be an added burden to already strapped health systems is key. To get around this, participants discussed the need for innovative service models that minimize impact on doctors, perhaps through nurse-led PrEP implementation, community-based delivery and self-testing. There’s also a need to tap existing providers such as STI clinics and reproductive health units. Activists at the meeting also discussed that another key way to convince governments of PrEP’s worth and desirability is through costing studies looking at models of test and start along with PrEP.

Jim Pickett (IRMA), the formidable gay prevention activist with folk hero status, entertained participants with snapshots of PrEP promotions from around the globe. The audience was riveted by his hometown Chicago’s prep4love campaign, with pretty yet provocative pics of queer couples. But afterwards, some delegates were disheartened, saying they could not run such gay-forward campaigns in their countries. Not yet, at any rate.

Members from each of the 14 countries represented at the meeting caucused and drafted advocacy plans to jumpstart the post-meeting national coalition work. A WHO rep in attendance promised she’d take these national priorities directly to the WHO representatives of each country to be shared with their health ministers.

The meeting closed on an inspirational note. We now have a roadmap for PrEP as an entry point to bring real change, leading human rights activist and former AVAC Fellow Gift Trapence noted. Or, as another dearly beloved leader put it, “I got a lion in my pocket and baby he’s ready to roar.”

New Film Series Captures Activists United by Urgency for HIV Prevention in Europe

In January 2016, the European AIDS Treatment Group (EATG) and AVAC jointly convened the Second European HIV Prevention Summit in Brussels. This unique meeting brought pharmaceutical companies, public health experts, academics and leading scientists in the field of prevention research together with over 50 European community-based advocates for three days of information exchange and debate.

Participants discussed the latest scientific and policy developments in the field of HIV prevention and formulated demands for researchers, medicine manufacturers and decision makers. The community urged concerted action and clear financial and political commitment to achieve effective prevention of HIV/AIDS in Europe. Specifically, the Summit called for the accelerated approval and rollout of PrEP in countries across the region, following France’s recent example as the first and only in Europe to officially implement and fund PrEP programs for men and women at substantial risk of HIV. The meeting also concluded with a call for the continuation of research for HIV vaccines, and rectal and vaginal microbicides, along with better systems for tracking the epidemic, including where new cases occur and where and how access is happening.

The packed agenda of the European HIV Prevention Summit included detailed reports on and discussions about groups of people at highest risk of HIV across Europe, including gay men, trans people, sex workers, people who inject drugs, migrants and the African diaspora. Timely information from completed, on-going and planned PrEP implementation studies was presented along with new civil society initiatives to provide PrEP and other prevention tools to those who need it. For a rare moment, stakeholders involved in the field of HIV prevention could gather in a space to exchange scientifically sound and politically meaningful ideas about way of slowing down the HIV epidemic in Europe.

In order to make the meeting accessible to those who were unable to attend in person, EATG and AVAC commissioned a three-part video series designed to give an overview of the main topics of the meeting: PrEP, Testing & Treatment, and the Future of HIV Prevention. The first of these films, focusing on PrEP, is now available here. The meeting report is also available for download.

Px Wire April-June 2016, Vol. 9, No. 2

Px Wire is AVAC’s quarterly update covering the latest in the field of biomedical HIV prevention research, implementation and advocacy. This issue is an advocate’s guide to the past, present and future of the dapivirine ring for HIV prevention. Featuring a timeline of key milestones that could lead to licensure, a simple comprehensive Q & A, and a closer look at where sub-Saharan African women will have access to daily oral PrEP and/or the Ring via open-label extension studies.

Patchwork of Prevention for Women: Oral PrEP and the Dapivirine Ring

Participants in the ring efficacy studies will get extended access to the ring via open-label studies. But will they have access to PrEP? This map shows which sites will provide PrEP and which will not. Excerpted from Px Wire.

Dapivirine Ring—Past, Present and Future

AVAC’s new issue of Px Wire is an advocate’s guide to the past, present and future of the dapivirine ring for HIV prevention. It features a timeline of key milestones that could lead to licensure, a simple comprehensive Q & A, and a closer look at where sub-Saharan African women will have access to daily oral PrEP and/or the Ring via open-label extension studies. We hope this resource will be used to spark discussion and guide plans for further engagement.

Click to download the new issue of Px Wire.

The full issue of Px Wire, as well as our archive of old issues and information on ordering print copies, can be found at www.avac.org/pxwire.

Introducing Implementation and Access Resources on PrEP Watch

Daily oral PrEP is moving from an idea to an offering in more countries and communities every day. And in the places where it isn’t being offered, demand is growing!

To help advocates track implementation on the ground in detail, AVAC has developed a new section of PrEP Watch (a clearinghouse of information on PrEP science, research, cost, access and advocacy) focused specifically on implementation efforts underway.

On the Implementation Initiatives page, you can find information about some of the different initiatives funding PrEP implementation in sub-Saharan Africa, including the USAID-supported OPTIONS Consortium and the PEPFAR DREAMS Initiative. Information about funder-defined initiatives can help advocates understand who’s who and what’s planned—and to follow the money!

You can also learn about the full spectrum of work happening at country level in Kenya, South Africa and Zimbabwe. As PrEP is rolled out in additional countries, more case studies will be added.

PrEP Watch will continue to grow as PrEP introduction and rollout moves forward and as new efforts and initiatives are started.

Reach us at [email protected] if you have comments or questions.