Why Folks Nationwide Are Heading to D.C. on March 31 to Advocate for HIV/AIDS

We don’t need to tell you that the landscape for everything related to HIV/AIDS is especially fraught right now. The new presidential administration has frozen HIV/AIDS funding globally and either frozen or complicated funding here in the U.S. in myriad ways.

Meanwhile, Congress is considering big cuts to programs that people living with (or at risk for) HIV here in the U.S. rely on, such as Medicaid and the Ryan White CARE Act. Now more than ever, folks living with HIV and their allies have to stand up and tell their elected leaders in Washington, D.C., the importance of these life-saving programs.

And for 32 years, that’s been the core purpose of AIDSWatch, AIDS United’s annual convening in D.C. of people living with HIV/AIDS and their allies. It’s a time not only to learn from one another in workshops and plenary sessions but to go to the Hill and sit directly across from one’s elected officials to tell the personal stories behind why this funding is so important. And it’s also just plain fun—a rare occasion for those of us who see each other on social media and Zoom calls to be together in person. (Hugs welcome!)

AIDS United asked a wide array of folks attending this year’s AIDSWatch (March 31-April 2) what’s motivating them to go. Here’s what they said!

CARL BALONEY, JR., CEO-elect, AIDS UNITED

“This year’s AIDSWatch may be the most consequential one in years because we are at a pivotal moment for HIV policy in the U.S. With the future of critical programs like PEPFAR, the Ryan White Program and Medicaid under scrutiny, we must remind lawmakers that every dollar invested in HIV care and prevention saves money down the road—and more importantly, saves lives. Cutting corners on public health isn’t just bad policy; it’s a moral failure. Human lives are not bargaining chips, and we cannot afford to let political gamesmanship dictate who gets access to lifesaving care. AIDSWatch is our opportunity to make that clear and ensure that our leaders prioritize real solutions that end the epidemic.

“AIDSWatch is also a time for us to be in community together in person, which a lot of us badly need right now. Online organizing is great but there’s nothing like being able to give one another hugs.”

SHEKINAH ROSE

Age: 63

Diagnosed with HIV: 1985

Lives in: Pittsburgh, PA

Involved with PWN-USA, U.S. Caucus of People Living With HIV, PrEP4All, Positively Trans

“I’m going to AIDSWatch because it’s so important for Democrats and Republicans alike to not cut HIV funding, prioritize PrEP access for all and preserve Medicaid and Medicare. This will be my second AIDSWatch. Last year, we had a strong contingent of people from Pennsylvania and some really robust meetings with our legislators on the Hill. We had the chance to educate them about HIV criminalization and how it impacts us as people living with HIV. We thought our meeting with one elected’s office would be 10 minutes, but they gave us a full half-hour.

“Also, as a transgender person at a time when transgender people are under attack, I’m going to AIDSWatch because if I’m not at that table, then I’m the meal! I need to be able to sit face to face with our leaders and show them who I am as a transgender woman living with HIV.”

MESSIAH ADONIS

Age: 26

Partner is living with HIV

Lives in: Las Vegas, NV

“As a Black transgender male, I’m attending AIDSWatch again because it’s vital for us to be visible in all important places! And because I loved every part of it last year! It was filled with community and true love and I learned so much about things like HIV criminalization. I’m showing up on behalf of my partner who is living with HIV and cannot be there. And also for a friend who killed himself in high school when he found out he had HIV because he didn’t want to have to tell his family that he was gay. I think cutting HIV programs right now would be like cutting out free school lunches for kids. My partner is so sweet and if he can’t get the medicine he needs, that’s going to affect his health. And that hurts me as well.”

ASIA BETANCOURT

Age: 62

Diagnosed with HIV: 1994

Lives on: Staten Island, NY

Overdose prevention worker

“This is going to be my first AIDSWatch. I’m going to connect with people who live the same struggles I do. It’s important to me right now with the Trump administration funding freezes and what they’re doing to the lives of people living with HIV globally right now. We need to tell our electeds that they need to keep putting funding into research for a cure to HIV.

“Also, I’m a Medicaid recipient. I want to tell them to show their humanity by not cutting that program. You can’t just leave us all hanging out on a limb. It would affect our community horribly.

“Also, I’m very social and I just love meeting people!”

RHEA DEBUSSY, PhD

Age: 34

HIV-negative, white transgender woman

Director of external affairs, Equitas Health, Columbus, OH

“I’m attending AIDS Watch, because I want to build upon our community’s rich history of HIV activism. As a transgender woman who works in legislative affairs, I’m thankful for the opportunity to join colleagues and community members from across the country for this important event. And at a time when funding for HIV treatment, prevention, and resource programs is under constant attack, I can’t think of a more important place to be than the halls of Congress.”

TOMMY CALLOWAY

Age: 37

Diagnosed with HIV in: 2010

Lives in: Omaha, NE

Program coordinator, AIDS United

“I’m attending AIDSWatch because advocacy is personal for me. As someone who is living with HIV and has spent years working in HIV prevention and community engagement, I know firsthand how policies impact real lives. I have previously been an ADAP recipient. With in the current political landscape, there is massive concern about plwHIV having continued access to resources that help afford medical care. I want to push for more funding that supports not only plwHIV but also the HIV workforce. We have come so far but still have a long way to go. I also enjoy the social side of AIDSWatch that allows me to connect with other advocates from around the country.”

ALEJANDRO AGUILERA

Age: 51

Year diagnosed with HIV: 2005

Lives in: Minneapolis, MN

“I’m attending this year’s AIDSWatch because it’s a vital necessity given the challenges we are facing. It’s a golden opportunity to maintain and build on relationships we established last year as we engage in this bipartisan effort. Let’s make sure none of us are left behind!”

BRADLEY ROSWELL

Age: 68

Diagnosed with HIV: 1992

Lives in: Traverse City, MI

Member of the Northern Michael Ryan White Advisory Board

“I’m going to AIDSWatch because I don’t want to end up having to pay two-thirds of my income for HIV meds because they cut funding. I’m a military veteran who travels up to five hours south every six months to see my infectious disease doctor in order to not have to pay for my meds out of pocket. I depend on the federal Veterans Administration for all 29 of the medications that I take. I’m also living with Parkinson’s disease and low-grade prostate cancer.”

BROOKE DAVIDOFF

Age: 46

Diagnosed with HIV: 2010

Lives in: Kansas City, MO

HIV peer educator

“I’m going to AIDSWatch to have the opportunity to speak truth to power, which isn’t a chance everyone gets. I’m excited to have received a scholarship. I’ve never been to D.C. or met in person other members of the U.S. People Living with HIV Caucus, which I’m a part of. I also love politics and advocacy.”

BRANDI “BEE” VELASQUEZ

Age: 44

Diagnosed with HIV: 1996

Lives in: Portland, OR

Oregon state lead for Positive Women’s Network-USA

“I’m going to AIDSWatch because Oregon is very underrepresented there. Last year, I was the only person from Oregon there. That fuels my determination to advocate even louder in these critical times. As in past years, I’ll talk about funding for HOPWA (Housing Opportunities for Persons with AIDS), which I’ve benefited from for 14 years via Cascade AIDS Project here in Oregon. A lot of our electeds from Oregon are new this year—that’s why it’s even more crucial that I shop up as a person at the table living with HIV. I want to tell them that without this housing support, my healthcare would not be as stable as it is today—housing is healthcare!

“Plus, I absolutely love seeing all my PWN sisters whom I rarely get to see in person. And hopefully the cherry blossoms will be out in D.C.! I always take a moment for myself at AIDSWatch.”

MICHAEL LUCIANO

Age: 58

Diagnosed with HIV: 1987

Lives in: Charleston, SC

linkage to care manager and peer services coordinator at Palmetto Community Care

“I’m going to AIDSWatch because it’s crucial to remind our electeds from South Carolina that our state has an ongoing HIV problem. Our HIV rates continue to be higher than we’d like them to be. I’ve been to AIDSWatch the past nine years, including virtually during Covid, and while our S.C. reps haven’t backed up all our asks, they’ve always been on the right side when it comes to basic support for Ryan White. Because S.C. hasn’t and likely won’t adopt expanded Medicaid, ongoing federal funding for Ryan White is really crucial for people living with HIV here. The state alone can’t afford it!

“Also, seeing my reps at AIDSWatch allows me to have an ongoing relationship with them and their staff here in my congressional district. And finally...I just love the fellowship of AIDSWatch!”

SONYA JEAN MILLIMAN

Age: 53

Diagnosed with HIV: 2017

Lives in: Baton Rouge, LA

harm reduction and prevention coordinator at Capitol Area Reentry Program; vice chair of local Ryan White Advisory Council

“I’m going to AIDSWatch this year to make some damn noise. I want to tell the story that when I went on HIV meds, I went in three weeks time from being able to pass my virus to someone sexually to not being able to because of quickly becoming undetectable on meds. I want to tell them that if I were not on a combination of Medicare and Medicaid, my meds would cost me $3,800 a month out of pocket, which annually is more than I make in my job. Plus, my whole life is about working with people with HIV, many of whom are unsheltered. We need these programs!

“I also love AIDSWatch because I get to spend time with my friends in the community—people I call my ’framily!’ I went last year for the first time and it was actually the first time in my life that I was inside the buildings where our federal government operates.”

JUAN MICHAEL PORTER II

Age: 42

Diagnosed with HIV in: 2015

Lives in: Brooklyn, NY

senior communications manager for Global Black Gay Men Connect; former senior editor at TheBody.com

“I’m going to AIDSWatch this year because I feel that sitting on the sidelines at this moment is unacceptable. In my first years with HIV, I’d have died if I hadn’t gotten my HIV meds and care through Ryan White’s ADAP (AIDS Drug Assistance Program). Knowing that those programs can just go away due to discontinued funding is so scary. I have private insurance now but there are so many people in the U.S. who have no other options. So we have to show up and use our lived experience to tell our stories eloquently to our representatives. Other activists have been doing this work for decades—now I want to show up and do my part! Seeing the faces of folks who’ve been in this fight so long has always energized me. Now I want to be the face that someone else looks to.”

This story was commissioned by AIDS United, an organization whose mission is to end the HIV epidemic in the United States through strategic grantmaking, capacity building, and policy advocacy. Visit their website to learn more about initiatives like AIDSWatch. 

---

Read More About:

• #Advocacy
• #Community