AIDS 2018: The Story is Messy

July 23, 2018

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.