Josephine Ayankoya works for the San Francisco Department of Health’s Bridge HIV program and is a member of AVAC’s PxROAR program. This blog is one in a series written by community scholars who attended CROI 2016.
Attending the Conference on Retroviruses and Opportunistic Infections (CROI) for the first time was an excellent learning opportunity. In the midst of many of the world’s leading researchers in basic, clinical and translational science, I was excited to be among the first to hear about breaking news in biomedical research. While sitting through sessions, and talking with colleagues, I constantly reflected on what this research meant for my communities. My excitement about the progress in research was matched with a desire to build on the data. With every study that I learned about, I was further inspired to support multidisciplinary approaches to ending the HIV/AIDS epidemic.
This is why I found Dr. Gerald Friedland’s N’Galy-Mann Lecture on confronting HIV and tuberculosis in New York and South Africa to be incredibly encouraging. As Dr. Friedland spoke on his experience working with under-resourced, low-income communities of color, he highlighted the importance of understanding the context in which HIV disparities occur. Two quotes stood out to me as he spoke about overlapping epidemics that people at risk for HIV have always juggled. The first was that, “We have to meet marginalized and stigmatized populations where they are and increase resources where they live.” The second was a reminder that, “Declines in HIV have followed eras of activism that led to an increase of political will.”
Meeting underserved communities where they are, increasing resources where they are needed, and increasing political will are easier said than done. It takes sustained commitment, and strategic planning but these actions are possible. More than anything at CROI, I was reminded that data are powerful and should be used as a foundation for civic engagement efforts.
In the United States, Black men who are gay, bisexual, or same-gender-loving (GBSGL) carry a disproportionate burden of the HIV epidemic. For years, the Centers for Disease Control and Prevention (CDC) have reported that while new infection rates in most populations are stable, they are increasing among Black GBSGL men, especially young ones. At CROI, the CDC released data which estimated that throughout the span of their entire lifetimes, half of Black GBSGL men could be infected with the virus. It is a heartbreaking, yet sadly unsurprising, call to action.
As performer, activist Tim’m T. West stated, “It’s easier to blame victims when you can’t talk about systemic racism... when you can’t talk about institutionalized homophobia... Then Black men become responsible for their own dying. In that sense, ‘It’s something they brought upon themselves.’” We cannot talk comprehensively about the disparities among Black GBSGL men without talking about the effects that oppression and under-representation play on their health. It is impossible to fully understand this disparity without acknowledging how the blockage of Medicaid expansion in the Deep South hinders millions of Black people from accessing basic health care. There is a myriad of social, political, economic and cultural barriers that exacerbate HIV disparities.
The socio-cultural context in which Black men, and all African heritage people around the world, live is complicated. Mitigating the multiple challenges that lead to these disparities will take a lot of work. In the words of Dr. Darryl Wheeler, “It’s difficult, but it’s still worth doing.”
Our work as HIV/AIDS researchers, educators and advocates naturally aligns with the work of colleagues in the legal, health, urban planning and educational sectors of society. The people most at risk for HIV are dealing with a series of challenges outside of maintaining their sexual health.
I was thrilled to hear researchers Darryl Wheeler and Sheldon Fields talk about the results of the study HPTN 073 looking at PrEP uptake in Black GBSGL men, because it demonstrated how research can be used to meet marginalized people where they are. The study enrolled over 200 Black gay and bisexual men in three cities across the United States—Atlanta, Chapel Hill and Los Angeles. These men were engaged in a culturally-competent method of counseling called client-centered care coordination (C4). They were also offered access to PrEP. The study found that with C4, the majority of Black GBSGL men decided to initiate and sustain the use of PrEP. Men who attended more of the C4 sessions tended to use PrEP more often than those who attended less of the C4 sessions.
Not only did this research meet people where they were by responding to psychosocial needs that had not been fulfilled, it increased resources for those who need them most. I have known about this study for years, so I was proud of its outcome. It reiterated what many already know: the context in which HIV disparities occur matters.
We will never end the epidemic without strategically working to change public policy. It is critical to use data from studies like HPTN 073 to increase the political will of our elected officials to implement interventions proven to work. To truly address HIV, we’ll have to build and maintain coordinated advocacy movements with coalitions across different sectors of society.
As Dr. Friedland stated the first day of CROI, activism leads to political will and, in turn, the decline in HIV. Our individual and collective actions will determine what this era of HIV research, prevention and treatment will entail. In a time when we have more tools than ever to prevent HIV, no one should be getting infected and every person with HIV should be able to access treatment. I hope now, more than ever, we use evidence-based approaches to advocate for and with communities most at risk for HIV.
Let’s make this era one to remember. Let’s make this the era where data were used to change the many structures that influence HIV/AIDS disparities.