Paul Carr has lived with HIV for two decades, and he continues to fight to change the virus’ narrative from death sentence to survival story.
Since joining the gay men’s health crisis in the 1980s, Carr has known over 130 people who’ve passed away from the disease, which affects more than one million Americans.
Carr, who lives in Rye, was diagnosed with HIV in 1997—a condition considered a “death sentence” at the time. Now, he leads a normal life, along with about 60,000 Americans who’ve lived with HIV for 20 years or more.
“I had the opportunity to live a life that my friends, those that’ve passed, no longer do. I think that’s what keeps me going,” Carr said.
Carr continues to support the gay community that has embraced him since his teens. His mission is to ensure people with HIV get access to proper care.
“With the advent of anti-virtual viral medication, people have in fact been living longer with HIV and AIDS,” said Kelsey Louie, the CEO of the Gay Men’s Health Crisis (GMHC), an organization that assists with everything from mental health to meals.
“At the rate we’re going in New York State, I think we’ll end the AIDS epidemic by 2020. We have the data, and we have the tools—and what we need now is the political will,” Louie said.
While medical advances have certainly allowed HIV patients to live longer, the community fears decreased access to affordable care could negate those advances.
Organizations such as the Ryan White HIV/AIDS Program exist to provide treatment services to the uninsured or underinsured—covering about 52 percent of Americans with HIV, amounting to about half a million people each year.
Nevertheless, changes to the general health care bill could be devastating to the community.
As Carr looked over the Senate health care bill, he noted, “With what is just coming out now, I might not be able to afford my Medicaid. What do I do then?”
He recalled an old video when Trump visited the home of Ryan White the day after the teen passed away from AIDS. He hopes the president will instill more compassion in his legislation because lives depend on it.
“We all know what happens to people who don’t take their HIV medications,” Carr said. “You die.”