In a sign of growing frustration with the rollout of the federal Ending the HIV Epidemic plan, dozens of activists stormed the U.S. Conference on AIDS (USCA) opening plenary session on Sept. 5 to demand that the Centers for Disease Control and Prevention (CDC) better involve community in decision-making around the goals and implementation of the plan.
On behalf of the activists, Jaron Benjamin of Housing Works read three demands to CDC director Robert Redfield, M.D., on the USCA stage at the Marriott Marquis Hotel in Washington, D.C. The demands included an "independent community partnership mechanism" for the Ending the HIV Epidemic by 2030 initiative, a moratorium on the use of molecular surveillance and attention to concerns about the security of data and its uses for HIV criminalization, and the creation of a place for community to be directly involved in pre-exposure prophylaxis (PrEP) negotiations with Gilead Sciences regarding the issues surrounding the CDC's patent for Truvada (FTC/tenofovir disoproxil fumarate) as PrEP. (It has been reported that the CDC and U.S. taxpayers have not collected any of the profits from Truvada for PrEP.)
Since the plan was first announced at the State of the Union address in February 2019, community advocates and organizations have tried to walk a fine line between trying to engage the plan in good faith and being skeptical that the plan would reflect the interests of the community -- given many of the policies of the Trump administration that contradict any effort to end the HIV epidemic. But CDC and other government agencies have been consistent in reiterating their desire and intention to engage with communities first and foremost, saying that each county and state that is a direct beneficiary of the efforts must involve community in developing their local strategies.
I have attended nearly every conference since February at which federal agencies have presented the framework of the strategy (they have yet to release a full document of the strategy and implementation plan) -- including the Conference on Retroviruses and Opportunistic Infections, the National HIV Prevention Conference, SYNChronicity, and ACTHIV -- and community participation and engagement in the strategy from the national, state, and county level has nearly always been emphasized. But the activists at USCA sent a message that they don't feel there have been any channels for true partnership with community.
"It is impossible to end the epidemic through biomedical interventions alone," said Ronald Johnson, chair of the People Living with HIV Caucus. "The CDC must commit to uphold the dual principles of meaningful involvement and racial justice in the HIV response."
Tensions with community advocates around more transparency in CDC efforts related to the plan have been building since the summer. On July 3, the CDC announced it was giving grants to DeKalb County, Georgia; Baltimore City, Maryland; and East Baton Rouge Parish, Louisiana, to "jumpstart activities to further reduce the number of new HIV transmissions." I was told by several sources at the time that this move alarmed many advocates, who felt as though funds were beginning to roll out without a clear strategy in place, nor with any community input. In a letter dated June 26, 11 organizations with constituencies in the Atlanta metro region sent a letter to CDC stating that they were concerned with a decision to grant $1.5 million to DeKalb County without any plan for community input on why the county was chosen for a direct grant, and how community might be involved in planning the best way to spend those resources.
It is these kinds of decisions that seem to be raising concerns about transparency and accountability toward communities, sparking the activists to take the stage at USCA.
"You ask the community what is needed and what will work, and when we answer, you work with us," said Malcolm Reid, program manager with THRIVE SS. "All progress in the fight against HIV has been made with the community and when the community forced it. No more closed-door meetings, no more listening sessions without feedback. We must be heard."
"I really do want to acknowledge the important role that activism has played in getting us where we are today," said Redfield, responding to the activists after their demands were read. Redfield noted that he was going to meet with the advocates on stage to discuss their demands further.
The plenary session at USCA was structured almost television-interview style, with the host of MSNBC's weekend show AM Joy, Joy-Ann Reid, talking with key government stakeholders. The first conversation was with Redfield, who not only discussed the tenets of the program but also answered some tough questions from Reid about the extent to which community members can count on a federal plan when the Trump administration has been trying to dismantle the Affordable Care Act and remove any federal protections from discrimination for LGBT people, while separating children at the U.S./Mexico border from their parents if they are living with HIV.
"Stigma has no role in public health," said Redfield. "I don't want people to be stigmatized for who they are. I want people to feel joy for who they are. I want people to join us in this journey in this collective effort to end the HIV epidemic and do it in the name of all the people we've loved and lost."
"We are not confused about who is most impacted by this epidemic, and they are the communities that are most surveilled and policed," Naina Khanna, executive director of Positive Women's Network, said. "And this administration is literally attacking those communities -- black people, immigrants, trans folks."