Federal funding cuts, delays undermine HIV response in North Carolina

The first domino fell when the U.S. Centers for Disease Control and Prevention didn’t renew North Carolina’s $13.8 million HIV Prevention and Surveillance grant before it ran out on May 31. 

The second blow came when the North Carolina Department of Health and Human Services passed that nonrenewal along to 13 nonprofits across the state that had been using the money for HIV and syphilis testing.

“It was like, how are we going to deliver these services?” said Le Shonda Wallace, founder and executive director of SEEDS of Healing, a small nonprofit based in Castle Hayne that serves mostly New Hanover, Pender and Brunswick counties, with some clients in Onslow and Columbus counties.

In response to the lost funding, Wallace cut hours for her six-member staff, all of whom already worked part time.

In a head-spinning reversal, though, by late June, the state learned it would be getting the federal funding after all. Since then, officials have been working to get the money to nonprofits like Wallace’s. She expects the first payment will arrive sometime in August.

The temporary loss of the $55,000 grant — about a third of the nonprofit’s annual budget — caused “a lot of anxiety,” Wallace said. She recalled scrambling to cover the launch of a new clinic and programming for promoting HIV pre-exposure prophylaxis, or PrEP, a treatment used to reduce the risk of HIV infection.

Clawbacks and cuts in federal funding have become a hallmark of President Donald Trump’s second term. Health care has been in the crosshairs — everything from anti-smoking efforts to Medicaid to basic biomedical research.  

And the upheaval and uncertainty around federal funding for HIV and syphilis prevention aren’t over.

The state had to cut its team dedicated to long-form interviews of people living with HIV after losing $683,360 when a different stream of federal funding ended. Data collected has been showing how people are accessing care and living with HIV.

“Knowing how our care systems are working is central to controlling the spread of HIV,” NCDHHS told NC Health News in an email. 

Additionally, the $26.1 million award from the Health Resources and Services Administration Ryan White Program, received in April, is less than what North Carolina had been given previously, DHHS said. The state received $36.7 million the year before. 

State health officials were told that full funding would be coming, but said in the email that future funding for that program and for HIV prevention and surveillance remain uncertain. 

“DHHS is concerned that ongoing uncertainty about these funding awards could cause disruption and confusion for clients and those people who rely on care and prevention services,” officials said in the email.   

Prevention work affected

While syphilis cases have been declining the past few years, they’re still more than double what they were a decade ago, according to an NC Health News analysis of state data. Cases where the illness is passed to a baby during pregnancy or childbirth — congenital syphilis — have been on the rise in North Carolina.

An NC Health News analysis of state data shows that, overall, new cases of HIV have held steady. People with HIV can progress to full-blown AIDS if they’re not getting treatment, and new AIDS cases in North Carolina have declined in the past decade. Advocacy groups credit that decline to a combination of new treatments that are easier to adhere to, along with improved education and awareness. Wallace, however, cautioned that a rise in cases in younger generations indicates a need for continued education and awareness campaigns. 

Advocates say the cuts and delays in federal funding are affecting work in North Carolina to prevent the spread of sexually transmitted infections — from HIV to syphilis.

Mecklenburg County, which had the most new cases of HIV in 2023 and one of the highest rates of new cases in the state, is scrambling to rehire several disease investigators. These are workers who go into the community to talk to people who have contracted HIV, syphilis and other transmissible illnesses, help them get treatment and track who else might have been exposed.

They were cut before officials learned that the county’s $1.6 million allotment of the state’s HIV Prevention and Surveillance grant would be restored, said Raynard Washington, the county’s public health director. He said 11 posts were eliminated in all. Of those, three vacant posts were left unfilled, two were saved by using funding from a different grant, and six people were let go.

Of the six who were furloughed, five were disease investigators.

“Their real job is to disrupt transmission,” Washington said.

The department has half the number of people to track down and notify people potentially exposed to HIV and other transmissible illnesses until those jobs can be filled again. Rehiring is not always an option, Washington said, because some people already have started new jobs. Training replacements can take upwards of six months.  

The county also ended up having to pause its contracts with groups that provided testing in the community for about six weeks.

“Those individuals not getting that investigation done in a timely manner are potentially exposing people and/or potentially getting sicker themselves,” Washington said.

Medicaid cuts

The timing of the grant delay couldn’t have been worse for SEEDS of Healing, which Wallace started in honor of her mother, Luwana Daniels, who died from complications from HIV and hepatitis C. SEEDS stands for Sustaining Empowerment by Educating and Developing Sisters.

The organization serves anyone, but it has focused on Black women, who made up 70.7 percent of all North Carolina women with HIV in 2023, the latest year data are available. 

Under the prevention and surveillance grant, the nonprofit is tasked with serving 200 people a year, which amounts to 600 screening tests. Each person is screened for HIV, hepatitis and syphilis.

The SEEDS of Healing clinic was starting to provide treatment for hepatitis C, but the uncertain status of federal funding put a question mark on that just as they had built some trust with the community, Wallace said.

Earlier this month, state officials warned that cuts to Medicaid, which Congress recently passed, could threaten the health and economic stability of millions across North Carolina. 

The cuts to Medicaid could have an outsized effect on people with HIV who are treated through the program. Ongoing care is particularly important with HIV, which can be suppressed with antiviral drugs. However, lapses in treatment can allow the virus to resume replication, letting the disease progress and possibly be transmitted via sexual intercourse or through needle sharing.

Medicaid is the largest source of health care for people with HIV, according to KFF, a nonprofit that researches health policy issues. Nationally, about 40 percent of nonelderly people with HIV get their health care through Medicaid, KFF said.

In North Carolina, more than half a million people stand to lose their health care because of changes to Medicaid and to the Affordable Care Act Marketplace, DHHS told NC Health News. That could nullify most of the effect of Medicaid expansion in the state, which has enrolled 669,527 people since December 2023. 

“Eroding access to Medicaid coverage could result in increased HIV cases and deaths,” DHHS said, noting that expansion gave many state residents with HIV access to health care, some for the first time.

In emails to NC Health News, state health officials outlined their concerns, saying a decrease in federal funding could result in:       

• More HIV transmission due to reduced access to prevention methods (like PrEP), less outreach, testing and linkage to care, and people having more time with undiagnosed disease.

• Less ability to individualize outreach to help people with HIV access care and to help partners who have been exposed get tested. 

• Less capacity to “detect and respond to changing trends in HIV, syphilis, and viral hepatitis infections and to quickly identify and intervene in outbreaks to improve outcomes.” 

"Over the past few decades, we have made tremendous progress together toward the goal of eliminating HIV both globally and here in North Carolina," NCDHHS Secretary Dev Sangvai said in a prepared statement in May. "Sustained funding is essential, not only to prevent the spread of HIV but also to support the health and well-being of North Carolinians living with the virus.”

This article first appeared on North Carolina Health News and is republished here under a Creative Commons Attribution-NoDerivatives 4.0 International License.