Warning bells are ringing as HHS hands over Medicaid data to ICE

The latest immigration-related action from the Trump Administration has serious implications for healthcare organizations serving low-income patients. HHS has allowed immigration officials at ICE to access key demographic data of Medicaid beneficiaries in certain states – including their names, home addresses, ethnicities. and immigration status.

According to a data sharing agreement obtained by the Associated Press, “ICE will use the CMS data to allow ICE to receive identity and location information on aliens identified by ICE.”

In other words, ICE can use Medicaid data, provided in good faith with the long-held expectation of confidentiality, to target and potentially detain and deport people without legal status who may be receiving emergency Medicaid coverage and healthcare services in states that allow non-US citizens to participate in healthcare programs funded by state tax dollars.

What happened?

While some Medicaid officials resisted the handoff, emails obtained by the AP show that top advisors to HHS Secretary Robert F. Kennedy, Jr. ordered the release of datasets on individuals in California, Illinois, Washington State, and Washington, D.C., in June. Under the agreement, Department of Homeland Security (DHS) officials can access data elements including names, addresses, birth dates, Social Security numbers, and ethnicity and immigration status.  

ICE agents can’t directly download the data, but they can access it during regular working hours until September 9, giving them plenty of time to develop lists of individuals they may wish to target for detention raids.  

“They are trying to turn us into immigration agents,” an anonymous CMS official told the AP.  

A swift response from nearly half of states

Twenty states, with California at the forefront, quickly sued the Trump Administration for  “silently destroy[ing] longstanding guardrails that protected the public’s sensitive health data and restricted its use only for purposes that Congress has authorized, violating federal laws including the requirements of the Administrative Procedure Act.”  

The lawsuit noted that “Congress itself [has] extended coverage and federal funds for emergency Medicaid to all individuals residing in the United States, even those who lack satisfactory immigration status,” and that “the context in which CMS shared this data with ICE casts serious doubt on the government’s explanation for its actions,” which is ostensibly to ensure program integrity. 

The government countered with its own statement from HHS spokesman Andrew Nixon who said, “HHS acted entirely within its legal authority – and in full compliance with all applicable laws – to ensure that Medicaid benefits are reserved for individuals who are lawfully entitled to receive them.” 

However, the states pursuing legal action disagree with this assessment. The suit demands the “impoundment, disgorgement, and destruction of all copies of any Medicaid data containing personally identifiable, protected health information that has already been unlawfully disclosed to DHS and DOGE,” the new government agency launched by Elon Musk that has been granted unprecedented access to a variety of sensitive government datasets in order to accomplish politically motivated goals. 

What does this mean for patients and healthcare organizations? 

For low income individuals, regardless of citizenship status, Medicaid is a lifeline that Republican lawmakers are eager to cut off. After drastically cutting close to $1 trillion in Medicaid funding over the next ten years, potentially throwing 10 million people off their health insurance, this latest effort could make it even more difficult for highly vulnerable communities to access basic care services.  

People of uncertain immigration status may avoid seeking care if they know ICE agents might be waiting for them at the clinic, leading to higher rates of preventable disease and worse outcomes for patients. 

In addition, a surge in crisis-level health events, coupled with reticence on the part of patients to fully participate in their own care in fear of being reported to ICE, could result in avoidable expenses that cost the health system much more than just allowing beneficiaries to retain access to preventative care.  

The move also puts healthcare organizations squarely in the middle of a complex battle over the detention of suspected non-citizens. Healthcare providers have already expressed concerns over ICE agents making their masked presence known on hospital campuses, and have anecdotally reported that patients are already avoiding care due to fears over being caught up in raids. 

The National Immigration Law Center has even released a guide for clinicians and healthcare administrators explaining how to protect their patients from immigration enforcement actions while maintaining their trust to ensure they will feel comfortable accessing necessary care. 

In a time when workplace violence and physical attacks on healthcare staff are on the rise, this added dimension of requiring clinicians to put their bodies on the line to protect the basic humanitarian principles of access to care is likely to increase burnout and further exacerbate shortages of qualified clinicians.  

What happens now?

As of July 17, officials were seeking a court order to block the sharing of data, says California Attorney General Rob Bonta, but it’s unclear if the damage has already started to impact patients.   

The Trump Administration appears to be continuing to pursue similar access to other datasets related to assistance for low-income individuals, including SNAP data, according to NPR. States that fail to comply with this latest request may lose program funding, further imperiling citizen and non-citizen beneficiaries who depend on government assistance to stay alive. 

It’s clear that the administration is planning to keep implementing mass surveillance activities as broadly as possible, which is likely to have wide-ranging implications for organizations charged with providing fundamental services for their communities. 

Healthcare organizations should review available resources around their legal rights and responsibilities in regard to immigration-related issues and be prepared to address challenging, quickly changing situations at the intersection of privacy, civil rights, and ethical considerations. 

Jennifer Bresnick is a journalist and freelance content creator with a decade of experience in the health IT industry.  Her work has focused on leveraging innovative technology tools to create value, improve health equity, and achieve the promises of the learning health system.  She can be reached at [email protected].