Community Health Workers and Patients Prepare for Medicaid Cuts

Dequia Rainey's patient, Joyce*, could barely eat.

She had severe dental problems and was unable to chew, meaning her food had to be blended or ingested as a liquid.

Rainey, a community health worker in North Carolina, feared Joyce was suffering from malnutrition, even as food surrounded her in nearby supermarkets and restaurants.

"There's only so much that you can blend-and I was able to obtain a juicer for her-but it's still not enough of the nutrients that she needed," said Rainey.

But the cost of dental surgery was too expensive for Joyce to afford.

Rainey attempted to find ways to help her get the medical care that she so desperately needed. She discovered a grant that might be able to help, but it would only cover the cost of surgery on a single tooth-only a small portion of the treatment Joyce needed.

Rainey explored Medicaid and Medicare as options, but Joyce was 60 years old-and didn't qualify for either health insurance program.

Then, in 2023, lawmakers voted to expand Medicaid in North Carolina to include 138% of the federal poverty level and adults aged 19-64. Finally, Joyce received health care coverage and got the dental surgery she required.

After years of drinking her food as smoothies, Joyce could chew solid food again. Rainey watched, relieved, as she gained weight back.

When Rainey saw lawmakers working to make the largest cuts to Medicaid in U.S. history, she thought of Joyce-and how much of a difference it made in her life.

The new law imposes burdensome work requirements and other red tape on people who get their health insurance through Medicaid expansion, like Joyce. The Congressional Budget Office estimates that over 5 million people will lose their health care from this provision alone, many of whom are still eligible for Medicaid but unable to keep up with the bureaucratic hurdles to keep their coverage.

Rainey, other community health workers, and patients who use Medicaid are preparing for how this could impact the landscape of health care in the U.S.

"You're going to increase costs because people are not going to have access to the proper care that they need," Rainey said. "It's going to cause so many barriers, so many limitations. And you're going to find an increasing influx of mental health disorders, chronic health diseases, you're going to see more impact of STDs. It's going to be a surge."

Preparing for additional red tape

In 2004, Maria Sutter was 28 years old and living in New York City. She had gone to college, received her degree, and jumped into her career at an architecture firm.

One day, as she was finishing a bike ride, someone hit her with their car.

Sutter survived, but sustained a severe spinal cord injury.

She moved back to Ohio and began navigating the Medicaid system for the first time in her life. It was a "whirlwind" to handle it after her accident, and Sutter couldn't believe how confusing it was.

"I definitely did not understand what was going on," said Sutter. "And, in fact, we made a mistake with the paperwork, and it didn't go through the first time."

Even though Sutter has now been on Medicaid for more than 20 years, recertifying every year is still "terrifying," and constantly leaves her with a barrage of questions cycling through her mind.

"Like, did I fill it out correctly? Did I fill something in wrong? Will somebody contact me if it's wrong?" she said. "And then I just kind of watch. Did it go through? Is it still pending? If it's still pending, is it my fault? Am I going to lose something? It's very nerve-racking."

The recent changes in reporting requirements-switched from once a year to every six months starting in late 2026-only compound that fear.

"It's not a way people should have to live, and the idea that you'll then have to recertify every six months... There's no breaking it for you," Sutter said. "You'll recertify and then you'll be ready to recertify again."

Sutter isn't sure if she will be part of the group that will have to file more frequently or not yet.

"The new requirements are still very unclear to me, which is part of the reason for my concern," she said. "The best I can do is try to stay informed, vigilantly check my email and traditional mail, and hope I don't miss information."

There are also new "engagement requirements" that mandate able-bodied Medicaid recipients to work, volunteer, or go to school for 80 hours a month, with exemptions for several groups, including people who are pregnant or recently incarcerated.

However, most people enrolled in Medicaid are already employed. When Arkansas implemented a similar policy, 18,000 people lost coverage in less than a year, primarily from confusion over the reporting requirements. There has been no evidence to show that work requirements increase rates of employment.

"It's purposely designing a system where you're set up to fail and that they want you to fail because then you won't be on the system anymore," Sutter said. "Or they want you to feel so insecure about it that you throw up your hands and say, 'I won't do this. This is too hard.'"

Community health workers and nurses at the Cherry Hill Free Clinic in Cherry Hill, New Jersey, share Sutter's fears. The clinic, who PIH-US has collaborated with for the last two years to promote the essential job of community health workers, provides free health care. The majority of patients are uninsured, though the clinic also serves critically underinsured patients, including those who only have insurance for emergency room visits, but not primary care or those with very limited employer insurance.

While the clinic does not have any patients with Medicaid, staff are expecting a large influx of patients who lose Medicaid coverage due to the new requirements, said Nurse Director Katherine Nguyen.

Cherry Hill Free Clinic Nurse Director Katherine Nguyen works to make health care available for free, primarily for those without insurance, through the clinic in Cherry Hill, New Jersey. Federal cuts caused the free clinic to lose a grant, and Nguyen expects their patient load to increase after slashes to Medicaid. Eleanor McCrary / PIH

At the same time, the Cherry Hill Free Clinic lost a federal grant in the spring, which was used to employ community health workers and a nurse. Federal grant funding was temporarily restored at the clinic, but it officially ended in July, said Nguyen.

"We're in this conundrum right now where people are losing access to health care through the Medicaid cuts, but then all the safety net organizations like us are also getting cut off at the knees," Nguyen said. "We're basically being asked to do more with less."

Pushing back against stigma

Destiny Murdock, a CHW in Maryland, was a Medicaid recipient herself many decades ago. Murdock is a survivor of domestic violence and stalking, which left her caring for three children as a single mother while constantly relocating and, eventually, changing her name and social security number.

During that time in her life, Murdock was able to access mental health services through Medicaid.

"I really don't know what condition my life would have been in, considering all that I went through, the trauma, (without it). Medicaid-it's about helping people get through their difficult seasons of health concerns. And then when they're better, they can do better."

Rainey, too, temporarily needed Medicaid. She was poor, working, and pregnant. When she was finally able to get on Medicaid during her second trimester, she discovered she had severe medical complications from her pregnancy.

"I was dying and didn't know I was dying," Rainey said. "If it hadn't been for having the right insurance-having any type of insurance-my child and myself would have died."

"That would have been my story," she said.

Amid the historical nationwide cuts to this program, both community health workers and past and present Medicaid recipients want to push back on the stigma surrounding it.

Sutter, who said Medicaid is what allows her to be as independent as possible, implored people to realize that one in four people will live with a disability throughout their lives.

"When that happens, you will need support. Someone in your family may have to compromise how they live or what they do-and then need help themself to help you. And so that is a lot of what Medicaid does. It provides a health benefit to people so that they can then provide support to others if and when the time comes."

Those who use Medicaid and community health workers who see its positive impact want people to understand how beneficial it is for society.

"We have a duty to help our people that are suffering regardless of race, creed, color or sex or gender," said Rainey. "It's a human concern. We are a society that is built to help one another, and to have these cuts performed will impede the impact of these populations that they were elected to serve."

*Pseudonym used to protect the patient's identity