Building People-Centered HIV Advocacy: Lessons from AIDSWatch and the Health Law and Policy Clinic

By Margaret Preigh, HLPC Student

This spring, the Health Law and Policy Clinic (HLPC) gave me the opportunity to travel to Washington, D.C. for the AIDSWatch conference. AIDSWatch, the largest constituent-led HIV federal advocacy event in the country, is organized by AIDS United, the U.S. People Living with HIV Caucus, and the Center for Health Law and Policy Innovation (which runs HLPC). At the event, HIV advocates—including many people living with HIV—meet to share stories, learn, and advocate for policies that support the HIV community, individual, and public health. AIDSWatch consists of two days of learning, followed by a day of advocacy on Capitol Hill.

While volunteering with HLPC staff at the registration desk on the first day, I immediately noted the close-knit relationships among the conference attendees. Many people greeted each other with hugs and questions about families, and they extended this warmth to me as a newcomer. Building the soft skills to interact with community members as an “outsider” and center lived experiences in advocacy is an essential skill I continued to build at AIDSWatch.

The first two days of the conference consisted of a plenary session and workshops. The plenary session wove together my clinic work, focusing on Medicaid work requirements, with the broader political landscape as it relates to people living with HIV, touching on issues like language and cultural barriers and immigration enforcement as impediments to receiving essential health care and wraparound services.

The first workshop I attended was a roleplay showing the life of an individual just released from incarceration following conviction for an HIV-related crime. HIV-related crimes criminalize the conduct of people living with HIV or use HIV status as an aggravating factor for other offenses, regardless of whether this conduct carries any risk of transmission (for example, spitting is criminalized in some states, despite scientific evidence that this activity carries no transmission risk). Narrated by someone who had been incarcerated, the roleplay showed the struggle of affording HIV medication, testing, court-mandated counseling, and more in addition to the typical expenses of release. The presenters described how people charged with an HIV-related offense may be required take regular polygraphs regarding their sexual activity (which they pay for), report sexual encounters to their parole officer, register as a sex offender, and more. It was shocking to realize how unfairly and severely an HIV-related conviction disadvantages a person for life. It was equally impactful to realize how people living with HIV may have to shape their lives around these laws, an effort that most people without HIV never notice.

The second workshop I attended focused on historic protest art of the Latine HIV movement. It began with a presentation of art created by Latine activists. Though the words of the posters were in Spanish, it was interesting to see how, as someone who does not speak the language, I still understood the message. For the second half of the workshop, participants screen printed our own protest posters. Many of us carried these posters to the rally at the Capitol building the next day.apitol building the next day.

The last workshop I attended focused on advocacy priorities for sex workers. What struck me most was how the double stigma of living with HIV and being a sex worker impacts the ability to access care. Since being a sex worker is both stigmatized and criminalized, many sex workers don’t feel safe disclosing their employment to physicians. This is in tension with the increased care needs people living with HIV have. This session stressed the unique needs of different groups of people living with HIV.

On the final day of AIDSWatch, the nearly 600 advocates in attendance headed to Capitol Hill to speak to our representatives in Congress. It was my first time on the Hill, and I was glad for the help HLPC staff offered in preparing my advocacy pitch to lawmakers. With their support, I explained the importance of continuous care for people living with HIV, and how Medicaid work requirements disrupt care, causing personal and public health concerns. My group of advocates from Massachusetts spoke with staffers from the offices of Senator Elizabeth Warren, Senator Edward Markey, and Minority Whip Katherine Clark, and had the opportunity to speak to Representative Jim McGovern himself.

I am very grateful for the opportunity to attend AIDSWatch, and honored by the opportunity to learn from and advocate alongside the HIV community. There is a tension between being a person not directly impacted by bad policy and wanting to help those who are impacted. Effective advocacy as an outsider means stepping back and centering people with lived experience to articulate the changes the community wants prioritized, as opposed to speaking over them to pursue well-meaning policies that don’t meet their needs. Law school teaches me how to do the conceptual side of advocacy, but not the human side. Experiences such as this allow students to learn soft skills essential to any legal career while benefitting their community.