HIV advocates rally on Capitol lawn, meet with congressional offices at 30th anniversary of AIDSWatch

Originally posted by AIDS United on 3/21/23.

FOR IMMEDIATE RELEASE

HIV advocates rally on Capitol lawn, meet with congressional offices at 30th anniversary of AIDSWatch

Contact: Warren Gill, wgill@aidsunited.org
(202) 599-8259

WASHINGTON — More than 350 HIV advocates from 37 states rallied Tuesday on the lawn of the U.S. Capitol before heading to meet with 182 congressional offices. The advocates were in Washington, D.C., as part of the 30th anniversary of AIDSWatch, the largest constituent-led HIV advocacy event in the country.

AIDSWatch is produced by AIDS United, US People Living with HIV Caucus and the Center For Health Law and Policy Innovation at Harvard Law School.

Actor John Roberts, who voices Linda Belcher in Bob’s Burger, spoke at the rally and encouraged advocates to tell their stories. He said, “Of course, statistics and data are important, but they don’t always convey the lived experiences of those living with and vulnerable to HIV. We are more than statistics. Your story is a powerful tool that helps lawmakers understand the impact of their decisions.”

In his opening remarks to AIDSWatch, Jesse Milan Jr., president and CEO of AIDS United, encouraged attendees, saying “We’ve never missed a beat. We’ve never missed a year, whether virtual or in person, of telling Congress our stories.”

He continued, “Nothing has stopped us for 30 years, not COVID, and we won’t be stopped now. We won’t be stopped by MAGA, racists and homophobes. We won’t be stopped by politicians who want to dismiss trans youth. We won’t be stopped by legislators who want to ban drag queens. And we won’t be stopped by governors who want to give back tax-payer money to stop HIV in their states. We won’t be stopped by Kevin Mccarthy. We won’t be stopped by Mitch McConnell. We won’t be stopped by anybody with a cold shoulder or a cold heart. Nothing will stop us in our advocacy until no one else is ever diagnosed with AIDS. No one else ever dies of AIDS. No one else ever acquired HIV. And all of us living with HIV, live a long and healthy life. Nothing will stop us.”

Elizabeth Kaplan, director of health care access at the Center For Health Law and Policy Innovation, shared that she has been living with HIV for 38 years, since she was a young child. She said, “There have been times when I have told my story, especially as a younger person, because I wanted to be seen, and because I wanted HIV to be seen. And there have been times when I have not told my story, because HIV does not define me or how I live my life. This is a space where I want to share my story, because telling our stories and being seen is the heart and the strength of AIDSWatch. We are stronger when we weave our stories and voices together, and together, we can create change.”

Martha Cameron, vice chair of the US People Living with HIV Caucus, echoed the importance of the stories of people living with HIV. She said, “Remember we are the subject matter experts. When you go to the Hill tomorrow, tell your story. That is the most important tool that we have. And politely make your demands known.”

She then laid out some of the issues the advocates were seeking to address. She said, “We must ask for access to comprehensive care for people aging with HIV and longterm survivors, people who were born with HIV. Very soon, people who acquired Medicaid during COVID might be losing it by the end of this month. I think that’s unacceptable. In this era of inflation, we got flat Ryan White Funding, and then there’s also the need to continue fighting for employment services for people living with HIV.”

In addition to the 30th anniversary of AIDSWatch, 2023 marks 30 years since the creation of the White House’s Office of National AIDS Policy. Sandra Thurman was an advocate who attended the first AIDSWatch, and then later served as the director of the office in 1997 under President Bill Clinton.

Thurman shared her experience at a plenary session. She said, “The voices of people outside and the partnership with people inside becomes really important because sometimes we’re at odds if we’re in government with what folks want to do from outside. But creating partnership and understanding that there’s always going to be some tension. We’re working with each other to get the most important things done and tell those messages.”

Harold Phillips, the office’s current director, also spoke. He shared, “Part of the challenge, as my part of my job, is trying to get different stakeholders and different groups who sit around the table to understand the statistics. The fact that HIV is, yes, a public health threat, but HIV is a result of systemic and structural racism. HIV impacts our Black lives. Our quality of life. And so having those conversations, whether it’s in the White House at the Gender-based Policy Council, whether its with stakeholders at Congress, whether or not it’s the Economic Development Council, whether or not it’s the Department of Labor and trying to get them to understand the role employment plays, is all part and parcel of the work of the ONAP director.”

ABOUT AIDSWATCH: AIDSWatch is organized by AIDS United, the Center for Health Law and Policy Innovation, and the US PLHIV Caucus. It is the largest federal HIV advocacy event of its kind. Participants are trained in effective advocacy skills and are coached on how best to share this information with policymakers and their community. After training, participants meet with members of Congress to share their personal stories about the impact of current policies on their community, highlight the importance of HIV as an issue for their constituents and present a face for the issue. Learn more on the AIDSWatch page.

ABOUT ORGANIZING PARTNER, AIDS UNITED: AIDS United’s mission is to end the HIV epidemic in the U.S. through strategic grant-making, capacity building and policy. AIDS United works to ensure access to life-saving HIV care and prevention services and to advance sound HIV-related policy for populations and communities most impacted by the U.S. epidemic To date, our strategic grant-making initiatives have directly funded more than $118 million to local communities, and we have leveraged more than $184 million in additional investments for programs that include, but are not limited to, syringe access, access to care, capacity-building, HIV prevention and advocacy. Learn more at AIDS United’s website. 

ABOUT ORGANIZING PARTNER, CENTER FOR HEALTH LAW AND POLICY INNOVATION, HARVARD LAW SCHOOL: The center advocates for legal, regulatory and policy reforms in health and food systems, with a focus on the health, public health and food needs of systemically marginalized individuals. The center’s broad range of initiatives aim to expand access to high-quality health care and nutritious, affordable food; to reduce health- and food-related disparities; to develop community advocacy capacity; and, to promote more equitable, sustainable and effective health care and food systems. Learn more at the Center’s website.

ABOUT ORGANIZING PARTNER, THE US PLHIV CAUCUS: The Caucus is a group of networks, organizations and advocates dedicated to the Denver Principles and the meaningful involvement of people with HIV/AIDS.  We seek to create a diverse and accountable culture of leadership and engagement at both state and national levels. Learn more at the Caucus’s website.