It’s been nearly a decade since New York state launched “Ending the HIV Epidemic,” an initiative to help reduce the spread of HIV and AIDS. Data shows it’s working, but there are still hundreds of new diagnoses every year.
And much like any other medical treatment, it’s not cheap. Those high costs can be overwhelming for many patients.
“It was, like, either you die working or you quit your job and go on benefits,” said Jeffrey Feliz-Ybes, who is living with AIDS.
That’s the decision he faced in 2010 after a devastating AIDS diagnosis.
“My viral load was in the millions. I needed to go on medication right away,” he recalled.
It was called Atripla, a pill taken once a day.
“I believe the cost at the time was $2,600 that came out of pocket,” Feliz-Ybes said.
He was employed and had health insurance, but couldn’t afford rent and even had to ask his sister for money. The cost was unsustainable.
“I had to disclose what was really going on with me in my life," Feliz-Ybes said. "I didn’t want to disclose at that time, but I had to.”
His story, unfortunately, is not unique.
“We are seeing a true erosion of access to health care to vulnerable populations in our country, and this does include people who are living with HIV and AIDS,” said Richard Haldeman, a physician assistant at Whitney Young Health.
Haldeman said around 500 out of about 100,000 people were living with HIV in 2021.
“That translates to about 111,000 people in the state of New York,” he said.
But Haldeman pointed to another statistic. In 2013, there were more than 2,800 new diagnoses in New York, while in 2021, there were about 1,400. He credits the state’s Ending the Epidemic initiative.
“Looking to identify people who have HIV who may not know it. Once we diagnose, link them to appropriate care and the third arm is to make available pre exposure prophylaxis, or PrEP,” he said.
Whitney Young is one of many organizations across the state specializing in expanding services to low-income individuals and those without insurance. It’s a one-stop shop with HIV specialists, case managers and insurance enrollers.
“So that we always have continuity of care," Haldeman said. "We don’t have people miss medications because of non-medical related issues.”
More than a decade after his diagnosis, Feliz-Ybes is managing the disease.
“I’ve regressed my AIDS to HIV, so I can live well and undetectable,” he said.
He’s also back to work, helping others navigate their treatment thanks to a New York City-based private, nonprofit community health plan called Amida Care.
“I’m being that example that I want to see in the world,” Feliz-Ybes said.
Asked if he ever thinks about where he’d be without more affordable access to his medication, the answer was grim but honest.
“At the stage where I was at, I wouldn’t be here today. Let’s just be real,” he said.