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Medicaid had promised that recipients' names, addresses and immigration status would stay private for decades. A December court ruling changed that. Now some data can be shared with immigration authorities. As Alex Olgin reports, some families face a painful choice about whether to get care.
ALEX OLGIN, BYLINE: The U.S. has some of the best medical care for people with rare conditions. That's why P and her family moved from Brazil to the northeast in 2016.
P: My daughter's life depend on Medicaid.
OLGIN: P's 11-year-old daughter has Rett syndrome, a rare condition that makes it hard for her to eat, breathe, walk and talk. P asked that we use her first initial only because even though she and her family have legal immigration status, she fears being detained.
P: She receives in-home support, and she also receives PT, OT, speech, aquatic therapy on a weekly basis.
OLGIN: That care, plus lots of doctors' visits, 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. When P heard the Trump administration planned to share names and addresses with immigration authorities, she panicked. P says her and her husband have private health insurance through work. They have Medicaid for their daughter and another son, who has a disability.
P: It bring us an amount of anxiety every day. Your friends are around you that are just being arrested, and you don't know if that can happen with you, too.
OLGIN: Even though data in some states, including California, Illinois and Washington, has already been shared with immigration authorities, it's unclear whether it's been used to identify individuals for enforcement. DHS didn't answer NPR's questions about that. But the fact it's being shared at all upends decades of promises by Medicaid.
CINDY MANN: It's really a 180-degree reversal of long-standing policy.
OLGIN: Cindy Mann oversaw Medicaid during the Obama administration and is now a partner at the legal and consulting firm Manatt Health.
MANN: The promise is really to assure people who are eligible for Medicaid to feel comfortable that they can access that care without fear of putting their immigration status into jeopardy.
OLGIN: That commitment is no longer on government websites. Mann says historically, the only reason Medicaid should share personal data with the federal government is for oversight - things like confirming eligibility. The Department of Health and Human Services told NPR that's what it's doing with these requests. But patients are calling Pattie Lopez to ask if it's safe to stay on Medicaid. She manages the health insurance department at Venice Family Clinic in the Los Angeles area. One woman was so scared, she dropped it.
PATTIE LOPEZ: She found it incredibly hard to go without health coverage, and so she came back. And, you know, she's like, now I'm here taking a risk because, you know, I need my medication.
OLGIN: Eighty percent of the community health center's patients rely on Medicaid. If people drop it but keep coming in for care, the clinic could face serious financial strain. It's already frozen hiring and is looking for other ways to cut costs. Andrew Cohen is an attorney with Health Law Advocates in Massachusetts. He says for those already enrolled in Medicaid or other programs, the federal government may already have their information.
ANDREW COHEN: So remaining on coverage actually may be no additional risk. There are instances where it may not be safe for everybody.
OLGIN: In December, a judge temporarily limited Medicaid data-sharing in 22 states that sued, including Arizona, Michigan and New Jersey, restricting it to people who are in the country unlawfully. In the other 28 states, like Texas, Kentucky and Utah, there are no limits.
For NPR News, I'm Alex Olgin.
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