Migrants often can’t access US health care until they are critically ill – here are some of the barriers they face

“Can you tell me about cancer care for the undocumented?” I asked Henry during an interview. He was a doctor who volunteered his time at a community-based clinic designed exclusively for low-income undocumented migrants.

I use pseudonyms throughout this story to protect migrants’ identities.

“It’s bad,” Henry said. “Cancer care for the undocumented is not there. It’s just not there for the most part. They’re dying of cancer. Period.”

“So where do they go?” I asked.

“They don’t,” he responded solemnly. “They either go back to their home countries or they just live with it until they die. That’s what happens.”

As a medical sociologist and expert in health care disparities between noncitizens and citizens, my research explores the many ways that health care and immigration collide.

Though most migrants have some form of legal documents like passports, visas and identity cards, I use the term “undocumented” in this article to refer to those whose documents are expired, invalid or otherwise missing. I feel the term is useful because it captures a heightened sense of insecurity and instability that many migrants face in their daily lives.

According to Migration Policy Institute estimates, more than 11 million undocumented migrants are living in the United States, and many of them are ineligible for health coverage. Though some states are working to challenge this, undocumented migrants remain one of the largest uninsured populations in the country.

For low-income undocumented migrants, navigating the U.S. health care system involves a number of risks, challenges and consequences that often make them sicker. My research is designed to shed light on these experiences.

Chilling effects: Self-denied care

In their 2020 article in the “Journal of Health and Social Behavior,” sociologists Andrea Gómez Cervantes and Cecilia Menjívar shared the story of a 30-year-old undocumented Mexican woman they called Amelia, who was apprehensive about taking her husband to the hospital for care. During an interview with the researchers, Amelia said she was afraid the hospital would check their immigration status.

“We decided that when we get sick, it’s better if we don’t go [to the hospital],” Amelia told the researchers. “We heal alone, we heal ourselves at home, or we would go to the Mexican store asking about medicines that we knew from Mexico or here in the stores.”

Restrictive immigration policy and a fervent anti-immigrant environment creates what immigration scholars call “chilling effects” for undocumented migrants. It makes safe spaces like hospitals and clinics feel unsafe. Fearing that health practitioners will out them for their legal status, many migrants decide to forego seeking care altogether.

According to the National Immigration Law Center, most health care providers are not obligated to ask about their patients’ legal status. Legally, the institutions of health care and immigration are supposed to operate separately, but this could change.

For example, in early May 2023, Florida Gov. Ron DeSantis signed Senate Bill 1718, which, among other things, requires hospitals to ask their patients about their immigration status.. Though migrants will have the option to “decline to answer,” questions about legal status will likely be enough to deter many from seeking care. It’s still yet to be determined whether other states will follow suit.

Why IDs matter: Waiting for care

Adrian, an undocumented Mexican man, needed to see a doctor to have his hernia surgery scheduled. He handed his ID – a consular identification card issued by the Mexican government – and insurance card to the check-in staff member, who responded with a smile and gestured toward the waiting area: “They’ll call you in shortly.”

Adrian’s surgery was scheduled later that afternoon.

That same day, Rodney, an undocumented Honduran man, arrived at a different clinic, also in need of a hernia surgery. However, two things distinguished Rodney from Adrian. The first was that Rodney’s pain was far more intense. Small movements caused Rodney severe pain in his abdomen, and if he pushed himself too far, his intestines could become strangulated, leading to a cutoff in blood flow and death. The second distinction was that Rodney had no ID.

“I’m sorry,” the staff member said. “Without an ID, I can’t check you in.”

Disheartened, Rodney left the clinic with a hand pressed to his stomach. The pain continued, and the waiting game began.

Like other low-income undocumented migrants without an ID, Rodney was unable to legally access a primary care provider and obtain a referral to surgically fix his hernia. This meant that Rodney had no other choice than to wait for his hernia to turn into a life-threatening situation, at which point he would be eligible for emergency care under the 1986 Emergency Medical Treatment and Active Labor Act.

Rodney’s case was one of many that emerged in my study about how low-income undocumented migrants navigate today’s health care system. Checking for IDs is a routine practice in medical settings. For health practitioners, IDs are necessary for medical reimbursement claims.

When undocumented migrants cannot provide an ID, they are often denied care and begin a trajectory of exacerbated suffering. For some, this means having their long-term care needs relegated to private, medically unaccredited personal care homes. For others, this means an involuntary waiting game where, for many, death seems like the only possible way out.

Under the current system, emergency care becomes possible for low-income undocumented migrants without an ID only after their bodies fail. For Rodney, care was only possible if he let his hernia worsen. In another case in my study, Pedro, an undocumented Mexican man with a urinary tract abnormality, had to wait for his kidneys to completely shut down before he could seek emergency room services.

“I’m just tired,” Pedro told me. “Waiting all the time. And now, I’m waiting to die.”

Health practitioners vow to “do no harm,” but when it comes to immigrant health care, the system is set up in way that legally inhibits them from “doing good.”

Medical deportation: Repatriated by hospitals

Legal scholar Lori Nessel opened her article in the Indiana Journal of Global Legal Studies with the story of a 20-year-old undocumented Mexican migrant construction worker she called Quelino. After accidentally falling over 20 feet to the ground, Quelino became comatose for three days and woke up with severe spinal injuries. The hospital treated Quelino for a few months but could not seek reimbursement for ongoing care because of his legal status.

Just before Christmas, and without obtaining Quelino’s consent or notifying the Mexican Consulate, the hospital put Quelino on a private plane to a Mexican hospital that was ill-equipped to care for him. After a year of suffering in this hospital, Quelino died.

Quelino experienced what immigration scholars call “medical deportation.” Also referred to as “medical repatriation,” medical deportation refers to the practice of forcibly removing low-income, uninsured, undocumented patients to other countries, often without their consent.

While the term “deportation” might suggest involvement from U.S. Immigration and Customs Enforcement, border patrol officials are not involved in medical deportation. Hospitals facilitate medical deportation without any government oversight.

The 1986 Emergency Medical Treatment and Active Labor Act requires hospitals to treat everyone – citizens and noncitizens – in emergency cases. After patients are stabilized, the law also requires hospitals to transfer or discharge patients to “appropriate” medical facilities. Hospitals want to accomplish this quickly because they are not reimbursed for post-emergency care. Ongoing care is expensive, and undocumented migrants’ ineligibility for health coverage makes it nearly impossible for migrants to cover costs.

Consequently, hospitals – recognizing that it is cheaper to transfer low-income undocumented migrants to another country than to continue caring for them in their own facilities – sign off on medical deportations to save money. This happens to hundreds, if not thousands, of migrants, according to sociologist Lisa Sun-Hee Park of the University of California, Santa Barbara.

This is what immigrant health care looks like today.