AIDS 2018: The Story is Vulnerable

Emily Bass is the Director: Strategy & Content at AVAC.

“Making yourself vulnerable means looking in the mirror,” said David Malebranche in his plenary speech today (July 26) at the International AIDS Conference in Amsterdam. His talk was pure power and poetry, and I (yes, it’s Emily Bass here again) would probably be well-advised to get out of the way and just transcribe it, but instead I’ll urge everyone to view it in its entirety (what do you think comes up with a Google image search for idiot?!) and, in the meantime, look in the funhouse mirror of the conference a bit more.

What do I see when I look at myself? A white, American, feminist, writer, mother and rights-based social justice activist with a passion for queer and women’s issues who has focused her work on HIV in biomedical issues for much of her career. Rights is in that list, but it’s more context than primary subject—until this week, when, as lead rapporteur for Track D, which focuses on human rights, I’ve looked at the conference, combination prevention, and myself differently. (Check out daily summaries here.)

Here’s what I see at the conference: The biomedical prevention field that is one of my professional homes has both an obligation and an opportunity to merge science and rights. So do I. The field, with historic and ongoing acknowledgment of the human rights issues that affect whether a program works or a product gets used, has laid a fair foundation. But in many parts of the world, foundations stay bare for years. Especially if money is lacking. We need to build, together, a deeper, more systematic, detailed and intentionally-designed approach to a hybrid rights-and-science agenda. The anti-HIV criminalization movement says it perfectly: human rights plus science equals HIV justice.

The signpost at this intersection of rights and science? Combination prevention. It’s a destination we haven’t arrived at yet. Not me, not the biomedical prevention field, not the broader AIDS response.

From both the human rights and biomedical perspective, the AIDS response is largely missing the boat on combination prevention, with sloppy definitions, inadequate funding and poor adaptation of evidence. Fortunately, Wednesday’s plenary speaker Nduku Kilonzo, director of Kenya’s National AIDS Control Council, said as much in her tremendous presentation, highlighting a “prevention crisis” and calling for reinvigorating primary HIV prevention and delivering differentiated prevention programs. Peter Piot, another Thursday plenary speaker, said much the same thing, pointing out diminishing prevention funding and that the quality of funding matters as much as the quantity—and dollars dedicated to censorious programs that prevent discussion of comprehensive sexual and reproductive health are not high quality.

Yesterday also brought the release of data from several trials that were, when launched, billed as “combination prevention” trials. The Botswana Combination Prevention Project (BCPP) and the SEARCH study both claimed that moniker—and then defined the approach quite differently, as did PopART (HPTN 071), a study in Zambia and South Africa that has not yet released data. In Hall 12, the largest room in the conference center, BCPP reported a 30 percent incidence reduction in communities where individuals with HIV were initiated on ART compared to those who were treated according to national guidelines. While BCPP included that buzz-phrase “combination prevention” in its name, the other element in the combo package was HIV testing, which is not, in itself a prevention tool, unless all people who receive a test result, positive or negative, also get linked to evidence-based prevention or treatment.

SEARCH went much further, defining its package to include same-day ART, treatment for diabetes and hypertension, and testing for malaria and TB. This trial, which ran in Uganda and Kenya, did not find evidence of greater incidence reduction in those who received the package, though it did see significant reduction in viral load, TB diagnoses, hypertension, knowledge of status and linkage to treatment in the intervention arms compared to the control. Why no incidence reduction? One answer, offered by SEARCH principal investigator Diane Havlir, is that SEARCH had an “active control” arm insofar as all communities had access to ART under government programs, and the control arm also had health fairs at the beginning and end of the three-year trial.

There is much to say about what the studies did and didn’t find—and why. In this particular note, I want to call attention to the results but also to a broader issue, which is that neither defined combination prevention in ways that reflected the evidence available at the time that they were launched. For example, in the context of study countries, they could have but did not include data on the number of infections averted when voluntary medical male circumcision is taken to saturation coverage (80 percent) among target male populations. Data on oral PrEP arrived later in the trial periods; data from the DREAMS Initiative programs on the impact of layered structural interventions for adolescent girls and young women must be integrated in any meaningful examination of combination prevention.

Combination prevention also, per this conference, must address rights infringements. In a powerful, information-packed session (WEPDD01), researchers from Kenya, Canada and Russia described how food insecurity, gentrification and housing insecurity respectively were independently associated with having a detectable viral load (Kenya). The same was noted for lack of access to health services (Canada) and risk of sharing injection equipment or using a syringe after someone else (Russia). Given the emphasis on U=U (undetectable equals untransmittable) as a prevention tool (the co-chairs choice session also saw data showing U=U is true for men who have sex with men!), integration of methadone maintenance treatment, policies and practices supportive of housing and food security and decriminalization of sex work and drug use are all evidence-based components of true combination.

Do these things need to be evaluated in trials? Not necessarily. In pointed remarks from the floor of a session on PEPFAR engagement on different thorny issues, Ambassador-at-Large and PEPFAR head Debbi Birx compared the investment in combination trials with investment in national-level programs taking key interventions to scale. “My opinion on this, not the US government’s, is if I look at what Namibia did, they got the same results as PopART, SEARCH and BCPP—these three studies cost more than all the PHIAs (Population-level HIV Impact Analyses) put together. We have to relook at how we invest and what we invest in.”

To date, the PHIAs have captured a remarkable level of incidence reduction accomplished mainly through scale-up of testing, treatment and achievement of virologic suppression in people living with HIV. That’s significant but not adequate to dropping incidence to the levels that would be classified as epidemic control. What gets us all the way? Scale up at a level not yet attempted, or even funded, of the elements of true combination prevention. And, as David Malebranche told his fellow Black same-gender loving comrades, “Let’s love on ourselves.” He wasn’t talking to me, nor should he have been. But he offered an invitation, as I heard it, to pose these questions: When you look in the mirror do you love what you see? Do you love it if you admit what you don’t know, if you cease to be the expert? Does the definition of combination prevention look different? I know I will be checking myself on these questions more frequently in the months and years to come.

AIDS 2018: The Story is Messy

Emily Bass is the Director: Strategy & Content at AVAC.

As the International AIDS Conference gets underway, AVAC is here with a look at what’s happened so far, what’s ahead and a reminder of the ways you can track the developments whether you are in Amsterdam or following from afar.

Actually, it’s one AVACer here, writing this initial update—Emily Bass—and in a departure from our usual update style, I am going to step out from behind the organizational “we”. Here’s why: On the eve of the official opening ceremony, it’s already clear that the story from Amsterdam is that ending epidemic levels of new HIV diagnoses depends on building services and societies that recognize individuals as wonderful, wild, weird, whole people, with more specificity, respect and rigor than ever before. It also depends on activism, nasty women and their male allies, everyone demanding change, refusing to play nice. We’ll feature further updates here and on Twitter throughout the week—but here’s one woman’s view of the meeting so far.

The most obvious messiness concerns the safety signal with dolutegravir (DTG), an antiretroviral with a magnificent resistance profile and minimal side effects that was and still is poised to be rolled out across sub-Saharan Africa. One of the conference’s first protests today—with a strong presence from AVAC’s COMPASS partners—centered on women’s right to access dolutegravir, even though a study in Botswana identified a possible relationship between the drug and a risk of a fetal abnormality known as neural tube defects.

The advocacy agenda for DTG exemplifies today’s complexity: women need to be given full information about the risks and benefits of DTG and alternative regimens; they need access to long-acting contraception if they desire it; they need to be able to set their priorities and have those matched by their health provider. Initial information about possible safety concerns with DTG led WHO to state that the drug was not recommended for women of reproductive age, a blanket statement that caused great concern about women’s right to choose their treatment options—at any age. At a satellite session today, WHO released updated ART recommendations that specify dolutegravir as first-line for women and adolescent girls with effective contraception or not of childbearing potential as well as pregnant women, from eight weeks after conception, breastfeeding and adolescent girls. The shift to language around “childbearing potential” versus “of reproductive age” was welcomed by advocates, as was the recognition of the need to give all women, as well as men, the choice to use this drug that is implicit in this recommendation.

That’s a promising shift towards a woman-centered approach. It’s an approach that puts ART programs in the midst of the unfinished—perhaps not-even-started—business of integrating sexual and reproductive health and rights with HIV services. It is easy to say that DTG rollout can and should continue in the context of expanded contraceptive access—far harder to figure how this will happen. The challenges are serious: family planning and ART services are still frequently siloed; retrograde and misogynist US government policy is limiting what PEPFAR can provide or counsel; and unmarried women face tremendous stigma about accessing contraception in many countries, not to mention the enduring stigma associated with HIV.

“Let’s have an Integration Index,” said Helen Rees, Executive Director of the Wits Reproductive Health and HIV Institute and AVAC board member, at today’s satellite session on hormonal contraception and HIV. The session was itself a landmark example of integration in that AVAC co-convened this session with Family Planning 2020 (FP2020), a global initiative focused on expanding contraceptive access. Beth Schlachter, FP2020’s Executive Director, was part of the distinguished panel of activists and researchers. Her introductory presentation provided a more robust platform than ever before for these discussions at the International AIDS Conference. The conversation centered on sexual health and reproductive rights, using that lens to look at the ECHO trial, among other things. ECHO is evaluating the copper IUD, Jadelle Implant and DMPA (also known as Depo Provera), to understand whether any of these impact women’s risk of HIV. The trial is slated to release results in 2019. With less than a year to go, panelists agreed that women needed better information from people they trust and more choices on the shelves to back up those conversations, no matter what results come from the trial! These next steps are complex, personal and essential to effective programs.

That theme—keeping the focus on people who will use products and acknowledging differences within groups of adolescents, sex workers, men—echoed throughout other sessions. It was a central point in a Saturday pre-conference on demand creation organized by the OPTIONS Consortium, key to a Sunday women’s prevention session and front and center in Zeda Rosenberg’s (IPM) full-throated call for systemic and non-systemic prevention options at the Monday satellite on biomedical research.

This type of “human-centered design” isn’t nice-to-have, it’s need-to-have—and yesterday—if the world wants to get serious about the prevention crisis that’s been making pre-conference headlines. AVAC has been sounding the alarm about this issue for years and there is no pleasure at all in seeing the crisis reach such proportions that it is now at centerstage. What there is, instead, is a hope that the recognition of this emergency will lead, finally, to primary prevention programs that take evidence-based interventions to scale in the populations that need them. These programs necessarily include VMMC, oral PrEP, reduction of gender-based violence and stigma, and comprehensive harm reduction.

This is messy work because it’s not entirely, or even mostly, medical. It’s the work of communication, negotiation and social marketing that reaches people where they are with messages that affirm and do not frighten, and that make agency and action seem possible in societies where those things are not often granted to girls and young women, gay men, transgender people and so many others.

On the way to writing this update, I ran into two women who were, years ago, mentors, role models, guiding lights in how to write and work and fight for justice. They were both living with HIV and had been diagnosed well before antiretrovirals were a reality. We found each other serendipitously and sat for an hour in the still-calm conference center and talked about what had happened in each of our lives, how none of it matched the neat narratives of news stories and documentaries about the fight for AIDS treatment, the launch of PEPFAR, the course of the global AIDS pandemic. We talked for a long time, left nothing out. The stories were messy. They were the reasons that my two friends had survived.

Announcing the Call for 2019 AVAC Advocacy Fellows

AVAC is pleased to announce the call for applications for its Advocacy Fellows program, now in its tenth year!

Consider applying to be a 2019 Advocacy Fellow and join the 63 Fellows and alumni of the program! We are looking for innovative and bold people and ideas to influence and improve how HIV prevention research happens or how new biomedical interventions are rolled out.

This update provides information on the Advocacy Fellows program, the application process, link to a short informational video and details on an upcoming informational call for interested applicants to be held on Tuesday, 7 August 2018.

The submission deadline for Advocacy Fellows applications is Friday, 7 September 2018. Download application materials at www.avac.org/fellows-application-materials.

About the Program

AVAC’s Advocacy Fellows program was launched in 2009 with the goal to support and expand the capacity of advocates and organizations to monitor, support and help shape biomedical HIV prevention research and implementation worldwide. The program is guided by AVAC’s conviction that effective and sustainable advocacy grows out of work that reflects organizational and individual interests, priorities and partnerships.

The Advocacy Fellows program provides support to emerging and mid-career advocates to design and implement advocacy projects focused on biomedical HIV prevention research and implementation activities in their countries and communities. These projects are designed to address locally identified gaps and priorities. Fellows receive training, full-time financial support and technical assistance to plan and implement a targeted one-year project within host organizations working in HIV or related advocacy. Host organizations are critical partners in the program and Fellows’ projects can be an opportunity for an organization to further develop its own work in this field.

The Fellows program focuses on low- and middle-income countries where clinical research on new biomedical HIV prevention options or the HIV cure is planned or ongoing; or where there is implementation or plans for rollout for proven HIV biomedical interventions and where there is exploration of strategies for integration of HIV and sexual and reproductive health to reduce risk.

HIV Prevention Research Advocacy Fellows are:

  • Emerging or mid-career community leaders and advocates involved or interested in advocacy around biomedical HIV prevention research and implementation.
  • Individuals with some experience or education in the areas of HIV and AIDS, public health, international development, women’s rights, communications and/or advocacy with key populations, such as adolescent girls and young women, sex workers, gay men, other men who have sex with men, transgender men and women and people who inject drugs.
  • Based in low- and middle-income countries where biomedical HIV prevention clinical research is planned and/or where implementation of multi-intervention prevention packages is planned, ongoing or emerging.
  • Able to collaborate with English-speaking mentors.

Please visit www.avac.org/pxrd to identify countries where research and implementation is ongoing or planned and to learn more about the research. For a list of ongoing trials, visit www.avac.org/summary-tables.

Learn More

Prospective applicants or host organizations who want to learn more about this program or have questions about the application process are encouraged to:

Register for the call here.

If you have any questions about the Fellows program or the application process, please email fellows@avac.org.

Applications are due by FRIDAY, 7 SEPTEMBER 2018.

Please share this information with your partners, and we look forward to receiving your application!

Tracking HIV Prevention @ AIDS 2018

Welcome to the first in a series of AVAC updates ahead of and during the 22nd International AIDS Conference, which will be held in Amsterdam, The Netherlands, July 23–27.

In this update we highlight some events and activities AVAC and partners are leading on or active in (and hope to see you at!) as well as the sortable HIV Prevention Roadmap of relevant sessions and activities at the conference. To keep up with the latest, bookmark our AIDS 2018 page and check it often for updates from the conference!

HIV Prevention Roadmap

The International AIDS Conference includes hundreds of sessions, side events, marches and meetings—many focused on HIV prevention research and implementation. This Excel sheet allows you to sort by focus; the PDF version has everything mapped out day by day. If there are events that are not on the roadmap but should be, please email us.

Global Village Zones

Research Literacy Networking Zone and HIV Prevention Marketplace
AVAC, in partnership with AfNHi, EATG, NHVMAS, TAG, and Wits RHI, is excited to host the Research Literacy Networking Zone (Booth 523 in the Global Village) at AIDS 2018. The RLNZ brings together advocates, researchers, community educators and local community members to network and discuss ongoing and planned HIV prevention, cure, treatment and implementation research.

This year, the RLNZ is also partnering with the HIV Prevention Marketplace Zone, which is being hosted by a number of seasoned HIV prevention advocates from east and Southern Africa who are Alumni of or currently participants in AVAC’s HIV Prevention Advocacy Fellows program. This Marketplace Zone will be a space where HIV prevention advocates, delegates and community members can come together to network, strategize and have informal discussions on current and future HIV prevention strategies as well as rollout of new interventions. Join us at Booth 525 in the Global Village.

In addition to features like a Help Desk (come with all your questions about prevention research!) and recharging area (for mind, body and devices), there is a robust schedule of events at the Zones. We hope that you’ll include some of the Zone sessions in your plan for the week! Keep an eye on our AIDS 2018 page for the schedule of events.

Pre-Conferences and Satellite Sessions

Click for details on select pre-conferences and satellites that AVAC and partners are participating in!

Stay tuned for additional updates as the conference kicks off!