Possible federal cuts to HIV program worry patients and medical providers in NC

Phyllis Williams was devastated when doctors diagnosed her with HIV in 2015. She had contracted the virus during a blood transfusion, and she felt her life would never be the same.

Hurtful comments from neighbors, family members and friends added to her stress. Some called her “nasty” or looked at her in disgust. She struggled to maintain her relationship with her husband, and she felt alone.

Williams, now 74 and living in Robeson County, found support from the Ryan White HIV/AIDS Program, a federal initiative launched in 1990 to help low-income residents living with HIV access medical care, medication and support services. She said the program paid her electricity bill for four months when each cost more than $1,000. It provided vouchers for air conditioner vents during summer months and covered the cost of her eyeglasses.

“I’ve never met them,” Williams said of program officials, “but they’re beautiful people.”

During his State of the Union address in 2019, President Donald Trump vowed to end new HIV transmissions in the country by 2030. Six years later, the Trump administration has moved to reduce funding for HIV initiatives, including several components of the Ryan White program. Funding for the $2.65 billion program could nearly be cut in half, impacting dental services, education and training for medical professionals, and HIV treatment research strategies.

North Carolina received about $16.4 million in April from the Ryan White program, less than half of the $36.7 million it received last year. The federal Health Resources and Services Administration told state health officials more money could be on the way but is not guaranteed.

More than 6,000 people in North Carolina are enrolled in the Ryan White HIV medication assistance program, accounting for nearly 15% of those living with the disease across the state, according to the N.C. Department of Health and Human Services. More than 3,400 are enrolled in medical and support services through the program.

With their funding uncertain, some North Carolina organizations that receive Ryan White money have started to cut programs and discharge patients. The Southern Regional Area Health Education Center, which is based in Fayetteville and serves several counties in the Sandhills, could have to eliminate services for more than 100 patients, according to HIV program coordinator Yvonne Early.

Potential cuts to Medicaid are compounding concerns about any drop in HIV funding. The One Big Beautiful Bill Act the U.S. House passed this month includes a Medicaid spending decrease of almost $800 billion. If the bill becomes law, the federal Medicaid payment rate would drop below 90%, which could mean an end to Medicaid expansion in North Carolina.

“These are some major concerns going forward that our government probably has not looked at or thought about, or don’t care,” she said. “We don’t know what the future holds for our patients.”

Patients in rural areas

The United States has seen a drop in HIV cases. Infections declined 12% in 2022 compared with 2018, according to the Centers for Disease and Prevention.

The South has more people living with HIV than any other region: 506.5 per 100,000 people. North Carolina has seen a rise in HIV rates. More than 41,000 people were living with HIV or AIDS in 2023, up from 35,457 in 2018, according to the N.C. Department of Health and Human Services. .

Cumberland County, where the Southern Regional Area Health Education Center is located, in 2023 had the second-highest HIV rate of newly detected HIV transmissions among North Carolina’s 100 counties, with 30.2 per 100,000 people.

HIV rates in North Carolina are highest in poor areas, where there is typically less access to health care. Nearly 900 people in Bladen, Columbus, Robeson and Scotland counties are living with HIV, according to NCDHHS.

Robeson and Scotland counties also had among the highest newly diagnosed HIV rates in 2023, with more than 25 new diagnoses per 100,000 people. Bladen and Columbus counties saw between 20.1 and 25 new diagnoses per 100,000 people, according to NCDHHS.

Lack of transportation can be a barrier to treatment, particular in rural areas. Early said the Southern Regional Area Health Education Center cut a Ryan White-funded program that provided patients transportation to appointments.

Without proper treatment, human immunodeficiency virus can progress to AIDS, which severely weakens the immune system and makes patients vulnerable to other infections and cancers.

Early said some patients at Southern Regional Area Health Education Center have expressed concerns about losing Medicaid benefits. Since state lawmakers expanded Medicaid in 2023, about 650,000 additional people have enrolled in the program.

North Carolina is one of 12 states that imposed a “trigger law” that says the expansion would be reversed if the federal match rate fell below 90%.

“Medicaid is the single-largest provider of insurance coverage for people living with HIV,” NCDHHS said in a statement. “Eroding access to Medicaid coverage could result in increased HIV cases and deaths.”

Williams said she enrolled in Medicaid shortly after she was diagnosed with HIV. It covered the costs a few years ago when she had three heart attacks and three strokes, she said. But those who enrolled under Medicaid expansion could lose benefits.

“Unfortunately, we don’t have an answer,” Early added. “We don’t know what the government is going to do. That’s what I tell patients.”