When health data meets immigration enforcement: What you need to know
By Faisal Karimi/Nowruz Media (California Health Journalism Fellowship)
Federal actions involving immigrants’ Medicaid data have raised urgent questions about privacy, access to care and the role of journalists in explaining complicated policy changes.
That was the focus of a panel, “When health data meets immigration enforcement: What journalists need to know,” at Health Journalism ‘26.
The panelists suggested that journalists should avoid treating Medicaid data-sharing as a narrow legal or policy story. Instead, they should report it as a public health issue with direct consequences for immigrant families, including children who are U.S. citizens. They urged reporters to explain what is known, clarify what remains legally uncertain and avoid creating unnecessary fear. Meanwhile, they should show how confusion over data privacy can cause families to delay care, drop coverage or avoid clinics altogether.
Panel moderator, Lara Salahi, said the intersection of health care, immigration policy and data privacy has become “one of the most consequential, if not confusing, areas for journalists to cover.” She said new federal actions allowing some Medicaid data to be shared with immigration authorities have triggered lawsuits, court injunctions, policy reversals and widespread uncertainty among patients, providers and state agencies.
Reporters across the country, she said, are already documenting a chilling effect: families delaying care, parents withdrawing children from health coverage, missed clinic appointments and confusion among health care workers about what information can and cannot be shared.
Sarah Grusin, a senior attorney at the National Health Law Program, said the legal framework around Medicaid data is complicated because several laws apply, including HIPAA, the Social Security Act and the Privacy Act.
“There’s not one clear set of rules,” Grusin said. “There’s a lot of intersecting statutes, and a lot of them turn on the purpose of the information-sharing.”
Grusin said state Medicaid agencies collect information when people apply for coverage, but not every family member’s immigration status is relevant. For example, when a child who is a U.S. citizen applies for Medicaid, the immigration status of a parent generally is not needed to determine the child’s eligibility.
The larger concern, Grusin said, is what happens after states submit Medicaid data to the federal government. Litigation has created a patchwork of rules, with some court orders applying only to states that joined lawsuits.
“This makes messaging extremely difficult,” Grusin said. “We don’t know what’s going on.”
Leo Cuello, a research professor at Georgetown University’s Center for Children and Families, said the data-sharing issue should be understood within a broader climate of immigration enforcement, Medicaid eligibility changes, public charge debates and misinformation.
He described the situation as a “fast-motion train wreck” and said immigrant families are experiencing “uncertainty, relentlessness, chaos.”
He said many children in immigrant families are U.S. citizens and may lose access to care because parents are afraid to fill out forms, visit clinics, or keep coverage.
Cuello urged journalists to explain both immigration risks and health risks. He said people also need to understand the consequences of avoiding prenatal care, discontinuing asthma medication, and skipping vaccines or regular medical visits.
Anna Claire Vollers, a Stateline reporter, said fear can spread faster than policy. She urged journalists to verify claims carefully, avoid overstating legal risks and build trust with vulnerable sources before publishing their stories.
Faisal Karimi is the Chief Editor of Nowruz Media, California.
