Opinion: NYC must reinstate vital funding for HIV care to end the epidemic

Miguel, whose name has been changed for privacy reasons, has had trouble keeping up with his health care since he arrived in New York City as a child. Miguel lives with HIV and struggled, in the past, to stay on top of lab work and necessary doctors appointments as an undocumented immigrant. Those difficulties made his HIV hard to manage, as is the case for many New Yorkers with unstable living conditions and undocumented statuses.

Miguel brought those challenges and fears to Callen-Lorde’s Undetectables program, where care navigators work with patients who are out of treatment to understand their worries and connect them to primary care providers. There are $100 gift cards available every three months to individuals whose blood work shows their HIV viral loads are too low to be found on a test, or “undetectable.” Continued treatment helps keep viral loads down, preventing transmission of the virus, while the gift cards help patients access food, transportation and child care – all facets of life that can make showing up for doctors appointments difficult. Undetectables is designed to keep hard-to-reach patients engaged in their health care, and I’ve seen it work firsthand since I became Callen-Lorde’s chief executive officer in 2023.

Miguel was overwhelmed with emotion during one fraught meeting with his navigator. He was ineligible for services through the city’s HIV/AIDS Services program and couldn’t keep a job. In response, the navigator checked his lab work and found him eligible for a gift card, breathing relief into his day and giving him another reason to continue forward with his HIV care.

The Undetectables program is just one of Callen-Lorde’s initiatives available to patients with HIV, and it represents a lifeline for people who otherwise might not be able to maintain their health care. It’s a way to break down the disparities marginalized patients can experience and slow the spread of the virus, which is an essential part of Callen-Lorde’s goal to stop the HIV epidemic. However, planned city budget cuts to the tune of $5.7 million threaten Callen-Lorde’s ability to continue the program.

Beginning July 1, cuts at the Department of Health and Mental Hygiene would completely eliminate Callen-Lorde’s $243,000 contract to run Undetectables, throwing the future of individuals like Miguel into jeopardy. Vulnerable people living with HIV would lose one of the few avenues they have to earn financial rewards that make continuing care easier and help achieve better outcomes. Our staff, too, would lose a vital opportunity to engage with and help patients that could be otherwise unreachable.

Moreover, the slashes would decimate a wide-ranging program that we know works. Nine organizations around New York have launched Undetectables initiatives since Housing Works began the city’s first in 2014. According to a 2019 University of Pennsylvania study, Black patients, those experiencing homelessness and those with substance use issues benefit the most from the program, which nearly doubled the share of studied individuals whose viral loads were suppressed over two years.

Getting and keeping patients like Miguel undetectable significantly improves their own health outcomes and reduces their health costs well beyond the entire annual cost of this program.

The department’s proposed cuts also come at a time when new HIV infections have plateaued in the city. According to the department’s own data, there were about 1,600 New Yorkers newly diagnosed in 2022, a number that is on par with 2021. The data also shows that Black and Hispanic New Yorkers, men who have sex with men and other vulnerable groups continue to be disproportionately impacted while progress on improving care outcomes remains “flat.”

While we are avoiding a substantial increase in cases, I see the plateau as alarming evidence that we need to double down on investments to end the HIV epidemic.

Miguel’s story and those of other individuals helped by the Undetectables program are proof that the city must reinstate this vital funding. Without it, consistent HIV care would be out of reach for too many New Yorkers who are patients at Callen-Lorde and other health care organizations around the city that are fighting to care for people regardless of their ability to pay. While there has been promising news coming out of the budget negotiations, we are calling on the city to follow through and reverse a total of $5.7 million in cuts to HIV funding and other community-based services. Simply put, it’s a matter of life or death.