The views and opinions expressed in this piece are the author’s and do not necessarily represent the position of Positive Women’s Network – USA.
“Preserving our Health and PrEParing for our Future.” AIDS Watch 2025 was from March 31 – April 2nd this year. I went to Washington. DC with 500+ advocates, people living with HIV and allies to grovel at the feet of the millionaires and billionaires. How do you bring empathy into rooms filled with apathy? How do I, how do we, impact people who seem hollow and soulless?
The opening panel from Monday evening featured Michael Elizabeth, the Director of Public Health Policy with The Equality Federation, Rachel Klein, the Deputy Executive Director at The AIDS Institute, and Lyndel Urbano, the Senior Director of Public Policy & Government Relations at Amida Car. They collaboratively reminded us: threats are not part of health care, control is. 40% of people living with HIV are on Medicaid. It’s also the largest source of HIV funding for meds and outpatient financial assistance. Over 270,000 trans people are on Medicaid. We, the people living with HIV, half who needed scholarships to fund our travel and hotel accommodations because at home we count quarters for groceries, dollars for gas and prescriptions. Counting calendar days, hoping our medication funds from the federal government continue to flow. Internally panicking, triggering already existing PTSD, while anxieties multiply the fears we silently live with, with HIV anyway.
To most of society, people living with HIV are undercover, living practically normal lives working everyday jobs under the radar. Not like these activists and I, out shiny and open. Regardless of if they are quiet or on the cover of POZ magazine, without Ryan White, ADAP, EHE, Medicare, Medicaid, or ACA, most of us could not afford the medications needed to survive. The monthly cost for most HAART is well over $4,000 a month.
Turning functional people into hospital and hospice patients because of taking away medications would be government sanctioned murder of its own citizens. Entitlement does not give you a pass for your negligence. How many human rights violations can one administration rack up? Never mind…
“We can not end the epidemic if we leave the vulnerable behind,” said Omar Martinez, a DACA recipient and Senior Manager of AIDS Policy Chicago during the ‘Stand Up Fight Back’ panel on Tuesday April 1st. They only know control; they only know fear, and emotions to them are a weakness. The plaque at the foot of the Statue of Liberty would need to be changed, if we are not willing to care even for our own sick. “The political landscape doesn’t change how much money is needed for the HIV epidemic,” said Drew Gibson, AIDS United’s Director of Advocacy. Our chances to thrive and survive relies on antivirals and alternatives don’t exist. “In the mist of all the chaos, you deserve a good life,” said Dafina Ward, Executive Director at Southern AIDS Coalition. Public health affects everyone. For us to End the HIV Epidemic, people who have acquired HIV require unaffordable medication to keep themselves undetectable and alive. Policy makers need to listen and understand that we know how best to continue this battle, however; we are fighting forces that want to rewind medical progress in an unfathomable way. “This movement needs to be lead and fought like never before,” said Jesse Milan Jr., JD, CEO Emeritus of AIDS United. This will result in an escalation of new HIV infections, and AIDS deaths that would have, could have been prevented. Without medication we will quickly overflow hospitals and hospice facilities nationwide.
When political negligence mirrors medical malpractice, obviously people living with HIV and allies needed to stand up and fight back, once again knowing our deaths would be premature. Without any humanity, politics fundamentals, like health care, are being threatened to be ripped away. “HIV isn’t just about medicine it’s about power. We demand full funding we are not a charity, it’s about survival.” said Malcom Reid, the Founder and CEO of the Unity Arc Advocacy Group, Speaker & Facilitator, Health Equality Advocate. He also runs the Policy Action HIV Caucus Committee I am on. These threatened programs work daily to quell the spread of outbreaks beyond their imaginations waiting in the wings. “The Minority AIDS Initiative was to break down barriers, help underfunded underprivileged people and restore trust in programs. The funders should not decide who gets to survive. Trust us, fund us, let us lead,” Reid continued. “We need sustained funding we need them to be committed to human rights and dignity.” Previous policies were in place for a reason, funding amounts were previously calculated based on community need and projection. “They need to reauthorize PEPFAR and the global funding to fight HIV, our communities are under guarded attack,” Reid said. Our voices of lived experience echoed thought the hallways of congress today. From newly diagnosed people, to Dandelions, and long-term survivors of every color, religion, nationality and sexual orientation imaginable.
We vocally expressed our vulnerable stories to congressional strangers, or their office staff, even to some political super stars, the majority mad with power, basking in control and domination. Surrounded by crown molded fancy offices filled with college-aged kids greeting us behind huge mahogany desks and eye-catching artwork. Our speeches were given, notes were taken, and business cards were exchanged, withheld breath we waited.
Is it possible? Can we help save our own and each other’s lives with the education of those in power? In the seats, elected people who were voted in by our neighbors will silently watch as access and funding to needed programs disappear. Do they hear us, do they understand the reality we face? Rolling back these safety nets will lead to the opposite of ending the HIV epidemic. After over 500 of us scattered into Senate and House offices where words like viral load and CD4’s were spoken, even brief HIV 101 talking points were brought up. Hopefully our words aren’t just echoes in the hallways and shiny floors reflecting our pleas, and our asks, speaking our truth into the faces of fear and power. Grovel, grovel, grovel, ‘please don’t kill us,’ repeats in my mind. Afraid to speak such rawness out loud and into the universe.
A Sharpe’s power should not outweigh the voices of hundreds, speaking for thousands. Embracing our horrifying privilege to rise up to this occasion. Collecting power from shared energy, enthusiasm as our white-knuckle grasp on one another grows tighter as cuts begin to float away. A conveyor belt of trauma, fear, and apprehensiveness, follow anxiety, and dread they all swarm around my heart and mind. We positive people won’t silently sit down, growing The Quilt patch by patch people the Trump administration would be sentencing to death.
Human rights dwindle while financial and health inequities rekindle a monstrous plan with no positive outcome for positive people, and those who love or care about them. How long does it take to know if it worked? Follow up with them at home was requested, this was not a one-time connection, we were there to begin relationship building with the hopes that our stories made an impact big enough to save each other and ourselves.
