When Anthony Randolph received news that he was HIV-positive, his first thought when hearing his diagnosis was, “I’m going to die.”
Randolph was in his 40s at the time and his doctor asked him if he wanted to live. When he answered yes, she told him to take his medication every day.
“And I took that to heart,” he said. “And I take my medication every day because I want to live.”
That was 20 years ago.
Randolph is one of more than one million people in the U.S. living with HIV. According to the Centers for Disease Control and Prevention (CDC), about 13% of those people don’t know they have the virus and need testing.
“I never thought that I would live this long,” he said.
The medication Randolph takes is one of the many life-saving advancements in the fight against the HIV/AIDS epidemic in the US. Despite major advances in the fight against the virus, many worry progress is being undone due to sweeping cuts by the Trump administration. Those cuts included a massive job cut last week at federal health divisions responsible for tackling HIV whether through research or expanding access to medication.
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The move came as part of Health and Human Services Secretary Robert F. Kennedy Jr. making good on his promise to transform government health care agencies. According to HHS, these changes are a part of a broader restructuring plan meant to “Make America Healthy Again.
“The entire federal workforce is downsizing now,” RFK Jr. said. “So this will be a painful period for HHS.”
Within days of the massive downsizing, RFK Jr. said some programs and personnel were reinstated. Still, uncertainty looms over health initiatives like those centered around communities most vulnerable to the HIV epidemic.
According to the CDC, an estimated 31,800 people acquired HIV in the U.S. in 2022, with the virus affecting some groups more than others. While HIV infections decreased 12% from 2018 to 2022, according to the CDC, the majority of new infections in 2022 were among gay, bisexual and other men who reported male-to male sexual contact.
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Dr. Yury Parra, the medical director of Harlem United, pointed to social and structural inequities that render these communities vulnerable like stigma, discrimination and limited access to healthcare and housing.
“When you see we’re still losing lives because of HIV or having patients acquire HIV, I see that more as a failure of our society, not necessarily the individual,” she said.
Harlem United, an organization working since 1988 to advance health equity, assists clients like Randolph with not only healthcare but also housing and resources for harm reduction.
“HIV affects all communities, and it should be a disease that we could prevent today,” Dr. Parra said. “That's why it is really concerning that in 2025, after having come such a long way in HIV prevention and treatment, we could be risking all the advancements that we have done.”
"And it's not just the medication alone,” she added. “It's empowerment. It's education. It's recognizing that individuals will make the best choices that they can for themselves if we provide them with the information and honor their autonomy.”
Dr. Parra said Harlem United is “certainly at risk” to potential changes under the Trump administration, including Republican budget proposals to cut Medicaid.
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“We are health centers. We're a recipient of funding to allow care to be given to patients who are not insured because of a number of reasons,” she said. “We're in a constant planning, asking for advice, asking what the other sister organizations are doing so that we can all organize and come together.”
Dr. Parra said she’s lost patients as young as 20 years old, but with recent progress in HIV prevention and treatment she helps patients who live long lives.
“Even within the last decade that I have been practicing medicine, it's so beautiful when I have a patient in their 60s and their 70s and they're coming to me and we're talking about their high blood pressure. We're talking about their diabetes, or they need a walker, and HIV is the least of their concerns,” she said.
“There's a lot more progress to go and we need to get there,” Randolph said
“From the beginning, we didn't even have HIV. We just had AIDS. Then we learned. We developed more. Then we learned about HIV and the difference. Then we learned about the different medications that we can take that will save us. It's been a progression, a steady progression. Why stop now? Why not wait until there's a cure?” he added.
Randolph, who is now a grandfather, said Harlem United saved his life.
“Harlem United made me aware that I more than just a disease,” he said. “I'm not going to let three letters run my life. I'm more than just three letters.”
