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People with cancer or HIV could lose Medicaid under new work rules, advocates say

Dr. Mehmet Oz, who leads the Centers for Medicare and Medicaid Services, explained the new work rules coming to Medicaid on Tuesday in the  White House briefing room.
Julia Demaree Nikhinson
/
AP
Dr. Mehmet Oz, who leads the Centers for Medicare and Medicaid Services, explained the new work rules coming to Medicaid on Tuesday in the White House briefing room.

Advocates for people with serious illnesses, like cancer and HIV, say the strict Medicaid work rules that the Trump administration released this week are likely to put ongoing treatments in jeopardy.

States must put the work requirements into effect by January 1. That was already a tight timeline, says Adrianna McIntyre, assistant professor of health policy at the Harvard T.H. Chan School of Public Health.

"It takes states literally months — usually years — to make the types of changes to their systems that they needed to make for this new rule," she says. "They were severely constrained by the timeline having a year and a half from the time of the law being passed to implement all of this."

At stake is health coverage for 68 million low-income Americans on Medicaid, the health insurance system jointly funded by states and the federal government.

States must "make the changes, test the changes to make sure they're not going to break the system, and then go live," McIntyre says.

The nearly 400-page interim final rule released Monday makes that process even harder. For months, federal officials have been meeting with states informally and giving them guidance, and states understood that people with conditions where continuous health insurance coverage was really important would be exempt.

"What the rule says, as published, is that that's actually not enough," McIntyre explains. "The condition or the disease needs to be actively interfering with your ability to work. So people with early stage cancer who are in radiation treatment but still have the capacity to work, or people who have HIV but can still technically work, are not exempted from the work requirement."

McIntyre and others foresee situations where a person newly diagnosed with cancer, who is working, loses Medicaid because they don't fill out the paperwork correctly. That could lead to patients losing coverage when they need it most.

Pitched as "a path to prosperity"

Republicans have long heralded work requirements as a way to encourage personal responsibility.

Dr. Mehmet Oz, administrator of the Center for Medicare and Medicaid Services, presented the policy to reporters at the White House Tuesday.

"If you're sitting at home, which is true for the millions of people who are able-bodied on Medicaid, on average, you're spending 6.1 hours watching television, or just hanging around," Oz said. "So, as a path to prosperity, Congress very wisely said, 'Let's get you back into the workforce.'"

One conservative group closely aligned with the Trump administration, the Paragon Health Institute, wrote in a statement that the rule "strikes the appropriate balance between necessary program integrity protections and accommodations for those who genuinely need assistance."

Republicans passed the new rules in their big budget bill that President Trump signed on July 4, 2025. That law, which passed without any Democratic support, used major cuts to Medicaid to fund Trump's policy priorities, including tax cuts and the crackdown on immigration.

The work requirements are part of a $900 billion cut to Medicaid, and they are designed to limit who can be on the state-federal health insurance for people with low incomes. The Congressional Budget Office estimated that about a third of that $900 billion cut comes from the work requirements. CBO also said 5 million people will lose Medicaid coverage.

Most on Medicaid already work 

The new requirements apply in the more than 40 states that expanded Medicaid under the Affordable Care Act. For years, that has meant any low-income adult who does not have access to affordable insurance at work could enroll in Medicaid.

Starting in January, adults in those states, from age 19 to 64 will have to periodically prove that they are either working, going to school or volunteering at least 80 hours a month. Alternatively, they will have to prove that they are exempt from the work requirement.

Most adults who get Medicaid are already working, according to an analysis of government data by the health policy research organization KFF. About 1 in 5 people are not meeting the 80 hours-per-month threshold, KFF found, and this population had barriers that kept them from the workforce. Some could not find jobs; others were laid off; others had retired.

Advocates warn of dire consequences

Medical groups and advocates for patients uniformly panned the rule. A coalition of 48 patient organizations wrote in a joint statement: "Our organizations are deeply concerned the interim final rule does not protect people with serious or complex health conditions and would instead dramatically and inappropriately increase the number of people who will lose their healthcare coverage."

Carl Schmid, executive director of the HIV + Hepatitis Policy Institute, had been lobbying for months for people living with HIV to have a blanket exemption to no avail.

"We're just going to lose people to Medicaid and then they're going to get sick and then they're going to die," he says. "So, yeah, I'm upset."

He says his group will file comment on the final rule, and start lobbying state by state to try and get exemptions. He thinks there will be lawsuits filed as well. (Comments are open on the interim final rule until July, and the government has the option to make changes to it or not.)

The American Academy of Pediatrics also urged the government to change the rule.

"The new burdensome requirements that many parents will face under this rule will ultimately undermine families' health and financial stability," Dr. Andrew D. Racine, the president of the AAP, wrote in a statement. "The policies to narrowly define who qualifies for exemptions will add to the state costs to administer the program, create headaches for families trying to navigate the bureaucracy, and harm the very people that Medicaid is meant to serve."

No help to find work

Jennifer Wagner, who analyzes Medicaid eligibility and enrollment at the left-leaning Center on Budget and Policy Priorities, points out that there's no funding here to help people find or keep work, as there is in other public programs with work requirements, like food assistance.

"That just implies or suggests that somebody could get a job if they wanted — they just need a little shove," she says. "Which just reflects a complete lack of understanding of what people are actually going through."

She expects that, rather than improve workforce participation, the complex rules laid out by federal health officials will cause chaos and confusion. "We know from past experience in Medicaid and other programs that it's usually the eligible people who lose coverage because of the work requirement," she says.

"Even if there's an exemption on paper that they qualify for, even if they are compliant technically of the policy, the act of reporting it — understanding what they have to do, filling out the right paperwork, providing the right verification if necessary — there's so much that can go wrong in that process that often leads to eligible people losing coverage," Wagner explains.

Some Republican-led states are launching the requirement early, but most are expected to launch by January 1.

Copyright 2026 NPR

Selena Simmons-Duffin reports on health policy for NPR.
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