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Rob Newells is an Associate Minister at the Imani Community Church in Oakland, California, and serves as Executive Director for AIDS Project of the East Bay—a community-based organization serving the most vulnerable and marginalized communities in Alameda County since 1983. He was a 2011 Fellow of the Black AIDS Institute's African American HIV University Community Mobilization College and has been a biomedical HIV prevention research advocate with AVAC's US PxROAR group since 2012.
I looked around a conference room at HIVR4P and said to myself (and my Facebook friends), “Where are the African Americans?” Chicago has lots of African Americans, but this research-heavy conference was lacking in community representation. (Shout out to the folks like Matthew Rose from NMAC and Noël Gordon from HRC, and also an R4P plenary speaker, doing the very necessary national and international policy and advocacy work, but as one colleague put it, “Who represents black and brown men in the US?”) African biomedical HIV prevention research advocacy is strong. African American research advocacy could use a boost.
It’s natural for black men working in HIV to attend conferences geared towards community like National African American MSM Leadership Conference on HIV/AIDS and Other Health Disparities (NAESM) and the United States Conference on AIDS (USCA), but we also need be in those spaces that are geared towards the researchers who are developing new strategies that will eventually be implemented in our communities. There’s no reason for the disparities in PrEP awareness between black people and white people that exist today.
Advocates like those I joined in being honored with receiving the 2016 Omololu Falobi Award for Excellence in Biomedical HIV Prevention Research Community Advocacy, have been trying to get the word to our communities since before the US FDA approved Truvada for PrEP in 2012. We’ve got to stay ahead of the curve.
After a few years of relative calm on the HIV prevention research front, the San Francisco Bay Area is now looking at four major studies, which will be recruiting participants at the same time (more info below). The HIV epidemic in the US disproportionately affects black MSM, which means they are also targeted for enrollment in these studies. And the way gentrification has affected demographics in San Francisco (black people made up 13.4 percent of the population in 1970, down to less than 6 percent today), black men 15 minutes across the bay in my hometown of Oakland which is still about 27.3 percent African American (down from 46 percent in 1980) will be heavily recruited to participate in these studies. And the data keep telling us that black men have lower health literacy than other groups – not only in the community, but also on the front lines of the HIV workforce as noted in the Black AIDS Institute’s 2015 “When We Know Better, We Do Better” report.
Black men need to be in the rooms where scientists are discussing their research because it affects us directly. As advocates, it’s our responsibility to help our communities understand sometimes hard-to-understand clinical trial results and their implications. We can’t wait to get to 1-in-2 black MSM diagnosed with HIV before we start taking HIV in black communities seriously.
On a community level, we have to talk about sex and sexuality. The young people who shared their experiences during the symposium “How to Talk to Me About Sex” told us that they learn from their friends and social media and the Internet. Not talking about sex responsibly in community is not helping prevent STIs, pregnancy, or HIV infections.
HIVR4P is focused on HIV prevention research, and black men from the United States were vastly underrepresented. The things being studied today may be the new prevention tools we’re rolling out in our communities in a few years. We have to be talking about them now. And for those of us who act as resources for clients and friends, we need to be able to answer (and ask) questions about these studies. Who should participate? Why would anyone participate? Which study might be the right study for you?
Locally, we have the AMP Study and Gilead’s F/TAF for PrEP study recruiting now. A long-acting injectable study is ready to start recruiting. And we expect to see a new vaccine trial start up in 2017. And California is a Medicaid expansion state, so most people already (theoretically) have access to Truvada for PrEP covered by their health insurance plans. You don’t have questions?
Conferences like HIVR4P are where advocates can engage in conversations with colleagues and researchers from around the world. It’s where we come to understand the issues around various biomedical HIV prevention methods and start to think about how to share what we learn with our communities. (Dennis Burton’s plenary presentation on “Progress in Neutralizing Antibody-based HIV Vaccine Design” helped me understand bNAbs for the first time since I started paying attention to them at HIVR4P2014 in Cape Town.)
I recognize my privilege. Not everyone gets awarded scholarships to attend meetings like HIVR4P. Fortunately, the conference sessions are available online for everyone to access. The Chicago Black Treatment Advocates Network hosted an AIDS2016 Report Back on the South Side at the same time as HIVR4P. (I missed a symposium session to Uber over for a couple of hours.) However we get the information, we have to improve our health literacy in general, and our biomedical HIV prevention research literacy specifically. Sharon Hillier’s plenary talk on “Rings and Things” is a reminder that Truvada for oral PrEP is just the tip of the iceberg. There are new options coming. We have to be ready. It’s past time for more African Americans to get with Solange and pull up “A Seat at the Table.”
“This sh*t is for us... Sometimes we don’t trust... This sh*t is for us.”