For decades, people applying for Medicaid were told their personal information — including their names, addresses and immigration status — would not be used for immigration enforcement.
But a December court ruling changed that. And that change has sent ripples of fear through families and communities.
"My daughter's life depends on Medicaid," says P., who asked that NPR identify her by her first initial only.
P. and her family have legal immigration status, but she fears that the health insurance keeping her medically fragile daughter alive could also put her family at risk of being detained or deported by immigration authorities.
For decades Medicaid promised eligible immigrants they wouldn't share information with immigration authorities. It was even explicitly written on government websites. Those commitments are no longer on the Medicaid website.
The promise was meant to assure eligible immigrants "to feel comfortable that they can access their care without fear of putting their immigration status into jeopardy," says Cindy Mann, who oversaw Medicaid during the Obama administration and now works at the legal and consulting firm Manatt Health.
Mann calls the change, which the Trump administration began quietly last year, a "180-degree reversal of longstanding policy."
'Anxiety every day'
P.'s 11-year-old daughter has Rett Syndrome, a rare neurological condition that makes it hard for her to eat, breathe, walk and talk.
"She receives in-home support," P. says, along with frequent visits to cardiologists, pulmonologists and other specialists. "She also receives [physical therapy], [occupational therapy], speech, aquatic therapy on a weekly basis."
All this care would cost tens of thousands of dollars without Medicaid — the joint state and federal health insurance program for more than 70 million people with low-incomes or disabilities.
P. says she and her husband are allowed to work in the U.S. legally and have private health insurance through their jobs. They have two children who qualify for Medicaid coverage because of disabilities.
"It brings us an amount of anxiety every day," P. says. She's had friends detained by immigration authorities and she worries about her family's safety. This is the case even though everyone in P.'s family has legal status, including two of their children who are citizens.
Unusual requests
Twenty-two states have sued to stop federal health agencies from sharing Medicaid data with the Department of Homeland Security, including Arizona, Michigan and New Jersey. At the moment, following the December ruling in federal court in San Francisco, Medicaid can share names, addresses and other identifying information for people who are in the country unlawfully with immigration officials. In the remaining 28 states including Texas, Kentucky and Utah, there are no limits on what Medicaid data can be shared with Immigration and Customs Enforcement and other entities.
Some other recent federal actions are raising new alarms.
One former state Medicaid director told NPR they received what they described as a highly unusual request from the federal government in summer 2025 — a list of mostly Latino-looking last names, with instructions to check only immigration status.
The director, who spoke on condition of anonymity because they were not authorized to discuss federal communications, said that's not how these reviews typically work. Usually, states are asked to review all criteria — income, disability and immigration status — to determine eligibility for the program, not single out one factor.
The director says they were floored. After reviewing the cases, they found everyone on the list remained eligible to continue with Medicaid.
Last August, the federal agency that oversees Medicaid, the Centers for Medicare & Medicaid Services (CMS), started a new initiative to review immigration status of Medicaid enrollees. The agency said in a press release it would start sending monthly enrollment reports with names of people it needed states to verify.
The Department of Homeland Security did not respond to NPR's questions about whether the data has been used for immigration enforcement. In the Federal Register and in a memo issued in October 2025, ICE says that it is rescinding a 2013 policy that said CMS and HHS data would not be used for immigration enforcement. The Associated Press first reported on the Trump administration's change in July 2025.
Choosing between care and fear
At Venice Family Clinic in Los Angeles, staff say patients are increasingly asking whether it's safe to remain on Medicaid.
Pattie Lopez manages the clinic's health insurance department. She says one patient became so worried about the policy change that she dropped her coverage — only to return after struggling without it.
"She found it incredibly hard to go without health coverage," Lopez says. "Now she's here taking a risk because she needs her medication."
Venice Family Clinic is qualified to receive special federal funding to take care of vulnerable communities, and 80% of its 45,000 patients rely on Medicaid. If people drop coverage but still need care, the clinic could face financial strain. It has already frozen hiring and is looking for other ways to cut costs.
Andrew Cohen, an attorney with Health Law Advocates in Massachusetts, said that for people already enrolled in Medicaid or other programs, the federal government likely has their information already.
"So remaining on coverage may be no additional risk," he said. "But there are instances where it may not be safe for everybody."
Some immigrants may be weighing whether to sign up or continue coverage. For P., though, walking away from Medicaid isn't possible.
"We don't have any other option," she says about dropping coverage for her severely disabled daughter. "We will have to risk that."
Without the coverage, she says, it's her daughter's life that would be at risk.
