Coming together for HIV advocacy

“No one wants to be pushed off a ledge they helped to build.”

Aquarius Gilmer, a striking young, black gay man wearing a bright lime green blazer, touched my shoulder as he delivered these powerful words. I struggled to keep my emotions in check as Gilmer, senior manager of Government Affairs and Advocacy at Southern AIDS Coalition, spoke eloquently to the audience about the need to honor long-term survivors of HIV and the work done before us, as we pass the torch to a younger generation of HIV advocates.

I had the privilege of sitting on the panel “Fostering Cross-Generational Collaboration in HIV Advocacy” with an amazing group of fellow HIV advocates that included Gilmer; Raniyah Copeland, CEO of Black AIDS Institute; and Guillermo Chacón, president of the Latino Commission on AIDS; and facilitated by the multi-talented Gabriel Maldonado, the young CEO of TruEvolution, Inc.

The session, as described in the program, was “designed to respond to areas of urgent, emergent, and unmet community needs,” and convened “a diverse group of HIV/AIDS advocates from different generations.”

Maldonado posed the following questions to the panelists:

Do you believe we can achieve meaningful outcomes in addressing health disparities and access to care, not in spite of, but with this administration [in the White House]?

How do we develop unified responses while still honoring the distinct and unique beliefs, approaches, priorities, and needs of different jurisdictions and communities?

Is there a role for community-based organizations who do not choose to fully medicalize their operations, primary care, or outpatient services? Are they sustainable?

What practices and approaches do we need to strengthen and replicate, and what practices or approaches should we abandon?

Held on the first day of this year’s United States Conference on AIDS, people in the audience seemed eager to hear about how to facilitate discussions between generations to address the issues facing the HIV community under the current administration in the context of its Ending the Epidemic (EtE) plan. As a long-term survivor I reminded people that we have been here before. In the 1980s, in the midst of an epidemic, our president at the time (Reagan) wouldn’t even mention the word AIDS, and yet we came together as a community and developed the tools and strategies we needed to survive.

Following the panel discussion, the room was divided into two groups, and participants shared their experiences while coming up with ideas and strategies for their own local EtE plans.

Key conclusions, taken from a follow-up report of the session, which was sponsored by Merck, are summarized below:

Intersectional advocacy is important—cross-generational, but also cross-cultural, cross-racial, etc.

We need to find common threads and move past prejudices

The HIV community should not marginalize long-term survivors

Be open to engaging and “walking down the path” with full knowledge that it may not work, but also allow room for the other party to grow/evolve

Advocacy in the current political climate and engagement with this administration is difficult, but not impossible

Utilize “Suspicious integrity”—engage but continue to question motives and potential downstream consequences

Acknowledge the discomfort and inherent tension of working with an administration that has engaged in behavior that “dehumanizes” members of the HIV community

We must remember that the HIV community already has power and resources

Taking a long view—and remembering previous victories—can empower us in these trying times

Look to our history, challenging administrations have come and gone. HIV advocates know how to work with hostile administrations

It is important now not to forget those who came before

Ending the Epidemic will require the community to bridge rifts within itself and to build relationships with non-traditional partners

Introduce collaborations and coalitions of local organizations and institutions to share data, and reduce silos [separating issues] and redundant or contradictory efforts

Look to other disease approaches (HCV, syphilis, STIs) for successful strategies

Engage the media to lift up stories of people living with HIV

“We must ensure that any ‘Ending the Epidemic Plan’[s]—nationally and locally—are not only aspirational and theoretical, but that they are actionable and tangible,” Maldonado told POSITIVELY AWARE in a subsequent email. “Grassroots leadership is essential to translating the needs on the ground in federal and state policies. Clinical and social service providers must hold the architects of the ‘Ending the Epidemic Plan’ accountable as we strive for innovation and culturally-responsive programs and services.”

The report went on to say that, “The panel exhorted the attendees to realize the powers and resources already at their disposal in the historical record. The final presentations noted that while jurisdictions within and external to the EtE plans have distinct needs that will require unique strategies, they have much in common. There are strategies that all advocates can promote, such as: stakeholder engagement that involves non-traditional partners like homeless services, faith-based institutions, the justice system…methods for reporting that promote accountability; and speakers bureaus to allow [people living with HIV] to tell their own stories.”