Advocacy in action at AIDSWatch 2024

By Anu Dairkee (MD, JD), CHLPI Clinical Fellow

On March 18 and 19, 2024, CHLPI’s Health Care Access Team Director Liz Kaplan, Staff Attorney John Card, and I, along with three students from the Health Law and Policy Clinic, joined hundreds of advocates at AIDS Watch 2024 to promote policies that will end the HIV epidemic in the U.S. AIDSWatch is co-presented by CHLPI and is the nation’s largest annual constituent-based HIV advocacy event, where the motto is “Nothing about us without us.” People living with and vulnerable to HIV from around the country come together each year at AIDSWatch to advocate that Congress continue the fight to end the HIV epidemic.

Much of the conference programming focused on improving equity in the U.S.’s HIV response. For example, a plenary session on health care equity featured several advocates, researchers, and providers talking about how HIV has impacted them and their communities. Among the many afternoon sessions offered was a panel I moderated on immigrant health justice and ending HIV, where panelists from three organizations (Apicha, La Clínica del Pueblo, and AIDS Foundation Chicago) discussed their experiences with increasing awareness of and access to culturally appropriate HIV care in immigrant populations. The panelists discussed the importance of anticipating how the political climate would affect HIV care for immigrants and implementing processes that allowed them to deliver care to immigrant communities that had come to depend on them. The panel also discussed how involving immigrants in their care by connecting with trusted members of the community has helped to increase their outreach. Overall, the panel focused on the importance of meeting new immigrants where they are in their journey and supplying them with spaces for both treatment and opportunities to connect with other immigrants and services that can help them with housing, connecting with members of the LGBTQ+ community and immigration services.

The conference programming was filled with stories of survival, moving memorials for advocates recently lost to the epidemic, and a sense of community that left me feeling like I had just been embraced in one big continuous hug. It was inspiring to see so many people living with HIV lifting each other up and finding ways to support the community.

On Tuesday, AIDSWatch participants and speakers attended more than 200 meetings at the Capitol with members of Congress and their staff. CHLPI staff and students attended meetings alongside advocates from Massachusetts and Hawaii, and had the opportunity to discuss various issues related to ending the HIV epidemic and to CHLPI’s work directly with congressional staff. I had the privilege of spending a thrilling day on the Hill with longtime advocate  Keiva Lei Cadena, co-executive director of Positive Women’s Network. Keiva used storytelling, a powerful tool for advocates with lived experience, to encourage members of Congress to support increased funding for the Ryan White HIV/AIDS program, while I relied on CHLPI’s expertise to support new legislation which would require copays made by or on behalf of an enrollee to count towards health insurance out of pocket maximum requirements. Pairing people with lived experience, who can tell their personal story, with policy advocates is an incredibly effective way of messaging to Congress.

Being a part of an advocacy event like AIDSWatch gave me the opportunity to see first-hand the effect that lived experience and policy advocacy working hand in hand can have. The event cemented for me my chosen path in the law of combining my experience as a physician with my knowledge of the law and the outstanding training I am currently receiving in health law policy at CHLPI to advocate for improved health care access for communities whose voices are so often not heard or suppressed.