March 7, 2016

Julie Patterson is an HIV prevention research advocate and public health professional who lives in Northeast Ohio. She is chair of the Case Western Reserve University/University Hospitals AIDS Clinical Trials Unit’s Community Advisory Board, a member of AVAC’s PxROAR program, and a member of the US Women and PrEP Working Group. This blog is one in a series written by community scholars who attended CROI 2016.

Being at CROI is like being inside a scientific tornado—data and results fly by, but they are difficult to catch. There is beauty in the force of it. Everyone is caught up, scientists and advocates alike. Once the dust settles, however, it is time to clean up and make sense of it all.

As I saw it, this year’s CROI was full of HIV prevention research victories.

It was incredibly moving to be a part of a standing ovation for the results of ASPIRE and the Ring study. A dapivirine vaginal ring used for HIV prevention has the potential to save the lives of millions of women around the globe. Also, new forms of PrEP and rectal microbicides are working their way through the research pipeline. They may eventually lead to even more options that increase pleasure during sex, are long-acting, give receptive partners control, and are designed to fit the different seasons of risk throughout one’s lifetime.

As advocates, however, these kinds of results are a beginning, not an endpoint.

Our job now—in light of the range of options noted above—is to demand further clinical research, open-label extensions, regulatory approval and rollout. For example, a ring cannot save a woman’s life if she cannot obtain it. Advocates must support the International Partnership for Microbicides (IPM) as they move forward for regulatory approval, and in the meantime, open-label studies should be funded to offer women who participated in the research the opportunity to continue to use the ring now that they know it’s safe and it works. It is unethical to do otherwise. Shall we tell women that a dapivirine vaginal ring can help to prevent HIV and then take it away? No. As the number of new HIV prevention methods expands, it’s important to keep our eyes on the prize: zero new transmissions.

Also at the conference, the US CDC released newly configured data that highlighted the situation in the US for gay/bisexual/same-gender-loving Black and Latino men who face a devastating lifetime risk for HIV. In the face of these data, we cannot rest. Systemic racism and structural violence are not predestined.

Noticeably, CDC didn’t run the numbers on trans* populations when they were calculating lifetime risk. If we don’t talk about trans* risk in these meetings, if we continue to make trans* people invisible in the data, who will act? We must continue to demand HIV prevention for transwomen, and especially transwomen of color, for whom the lifetime risk can be overwhelming. It was a step forward for the conference to host Dr. Tonia Poteat’s (Johns Hopkins University) brilliant plenary focused on Transgender Populations, but it is not enough. We must fight to keep trans* people in the forefront of prevention.

As AVAC, BAI and Community Educator Scholars, our job is to ask the hard questions, to dig deeper than the numbers, to contextualize the data. As a group, we bring history, anger, passion and wisdom to the research table. We voice the fears, the hopes, and the demands of our communities. Our strength is our presence and our collective effort.

Advocates are also tasked with translating what we’ve learned at CROI into information that people can use. We come home to our loved ones: people living with the virus; communities working to fight HIV; and vulnerable people who need this research and these results. As we share what we heard, we create consumer demand and the push that researchers need to move forward. Hope comes from this dialogue. The research to implementation cycle will continue, but only if we play our part.