When Virginia resident Melanie Stephens opened a letter on Aug. 31 laying out coming changes to Medicaid, she had a panic attack. The letter, reviewed by NBC News, explained the new federal work and reporting requirements for Medicaid recipients that are slated to take effect on January 1, 2027, threatening the healthcare coverage of roughly 10 million Americans. Congress approved the changes last year with the passage of President Trump’s so-called “One Big Beautiful Bill,” leaving state governments scrambling to prepare for the most substantial change to the program in decades.

Stephens and her husband, Greg, are full-time caregivers for their 22-year-old daughter, Rachel. Rachel requires intensive, round-the-clock care, including nourishment through a feeding tube and medication facilitation five times per day. “There’s no one that could possibly care for her medically, or emotionally or cognitively,” the pair said, adding: “She would have no will to live.”

Melanie long led these tasks until Rachel’s health declined so drastically during the pandemic that Greg was moved to leave his job as a physician last year to help. With both of them acting as full-time caregivers for their disabled daughter, they will be exempt from the 80-hour-per-month work or community service requirement that will apply to most eligible adults starting next year. But they will still face the added burden of being required to recertify their exemption every six months. 

“Our concern is not so much on our part because we are thorough,” Greg Stephens said. “Once it leaves us and goes to a Medicaid worker to process, that’s where we are concerned they’re going to miss a deadline or fall through the cracks, and we have no control over that.”

The challenges of receiving Medicaid are something he never considered until his family was directly affected, he said, even admitting that, as a physician, he often judged patients who received Medicaid. “We spent months calling other insurance companies and other agents and trying to find another way, and there was no other way,” Melanie Stephens said.

The fact that tens of millions are likely to lose coverage or experience unnecessary disruptions as a result of the bill’s new administrative requirements was at the center of congressional debate last year. The Republican senators and representatives who ultimately passed the bill were unmoved. They argued that the legislation targeted waste, fraud and abuse, with Senate Majority Leader John Thune insisting at the time that the law “doesn’t cut Medicaid.”

But even if it technically doesn’t cut the program, health care experts say people will lose coverage because of the unnecessarily burdensome red tape alone. It’s “fighting government for something that you’re entitled to,” said Virginia Health Secretary Marvin Figueroa, adding that the pending coverage losses were “a predictable surprise.”

A new, $2 million campaign aims to soften the blow that the changes are going to have. Organized as an independent nonprofit, Keep Your Care was founded by the Service Employees International Union and two health care advocacy groups, Caring Across Generations and the Healthcare Education Project.

The organization’s goal is to educate states and Medicaid recipients about changes and how to keep their coverage, including which requirements and exemptions may apply to them, and track reporting deadlines. Its work centers on seven Medicaid expansion states where millions stand to lose care: California, Georgia, Illinois, Michigan, New York, North Carolina and Virginia.