“A community that is not seen cannot be effectively served.” Notes from the United States Conference
In September 2019, our team headed out to Washington DC for the United States Conference on AIDS (USCA). Center Director Dr. Rob Stephenson and research staff attended many workshops focused on the plan to end the HIV epidemic in America. Here is a recap of the main themes of the conference:
Day 1, by Leland Merrill
One of the most powerful moments of USCA was the protest staged during the first day’s plenary. The protest began after Centers for Disease Control and Prevention director, Dr. Robert Redfield, spoke about the agency’s new plan to end HIV by 2030. Throughout his interview, Redfield spoke of “developing innovative care delivery systems, community-specific plans and a redirection of resources,” all of which sounded progressive. However, these plans held little weight for community activists, as many claim the CDC often falls short when developing new plans to actually include people most affected by the epidemic.
Community members quite visibly reminded USCA attendees of the very human side of the conversation via protest signs; examples read “clusters are people,” “eye’s off my virus,” “we are not infections,” and “consult with our communities.” These messages were succinct, direct reminders of human experience that we must be mindful of when conducting research. Though research aside, I was grateful just to witness community members courageously sharing their stories, because as researchers, we know there is inherent value in simply listening.
In addition to sharing experiences, protesters responded to Redfield’s interview by voicing their critiques and demands. Topics included:
Molecular HIV surveillance and HIV criminalization, particularly the lack of consent within this system.
Hiring community members when producing data about the community, especially trans women of color, considering how this community is disproportionately affected by the epidemic.
Ending the misgendering of trans people within HIV statistics
Ensuring that federal resources are going to the communities, especially communities of color.
Many of us were already tuned into these realities, but were reminded of community concerns around consent, proper inclusion, proper allocation of resources and accuracy of identity within data. As our center launches new initiatives it is vital we recall the experiences shared. For me, this protest was a powerful reminder of why we do the work we do.
Day 2, by Catherine Washington
The second plenary guided us through the history of the HIV epidemic accompanied by testimonials from people living with HIV. This plenary was hosted by Gilead and included appearances/words from the leaders of prominent organizations. These are the leaders of groups that serve those within the community who are most marginalized such as: Trans/GNC/non-binary folks, latinx and black people, native American people, and everyone who sits at the intersections of those identities.
"Protest is in the DNA of the movement"
It was stressed that these community led efforts are what have initiated and sustained the fight against this epidemic then and today. And that in particular, progress cannot be made without community involvement. Especially involvement though protest, which was said “is the DNA of the movement” and has been at the heart of the establishment and growth of the National Minority AIDS Council (NMAC)
Day 3, by Michael Miller-Perusse
One of the milestones included in the History of the Epidemic plenary session was also the subject of the third plenary: U=U. I also had the privilege of attending one of their breakout sessions, where I heard the origins U=U.
The U=U campaign was started in 2016 by a group of people living with HIV (PLWH) who formed the Prevention Access Committee (PAC). When these individuals discovered the research that showed PLWH who were on antiretroviral treatment could not transmit HIV, they were furious: Why had their care providers, people who knew this fact, kept this information from them? So, those at PAC—including Bruce Richman, the Founding Executive Director of PAC and the U=U campaign—took this info into their own hands. In partnership with leading scientists in the field, they released a Consensus Statement (a.k.a. the Swiss Statement) based on this research. Since then, U=U has spread to nearly 100 countries via over 900 community partners, being translated into 15 languages and counting.
At the plenary session we got to hear the stories of multiple U=U ambassadors, all of whom shared the sentiment, “As someone living with HIV, U equals U has changed my life!” After the anger of being denied this information subsided, they shared, relief followed. It was as if they had a weight lifted from their shoulders—the weight of responsibility to not bring harm upon the ones they loved. No longer did they feel like disease vectors, but human beings. They could love others again. They could love themselves again. They wanted everyone living with HIV to feel this same feeling.
During his speech, Bruce Richman made a bold statement on the future of our efforts to end the HIV epidemic. There are approximately 400,000 PLWH in the US alone who are not engaged in care. According to both Bruce and Dr. Anthony Fauci—the Director of the National Institute of Allergy and Infectious Disease—all of our prevention efforts are important. However, it is reaching these 400,000 people, getting them into care, and helping them reach undetectable, if they so choose, that is the singular priority in not only improving the health of PLWH in the US, but in ending the epidemic itself.