When José moved his family to the United States from Mexico nearly two decades ago, he had hopes of giving his children a better life.

But now he worries about the future of his 21-year-old-son, who has lived in central Illinois since he was a toddler. José’s son has a criminal record, which could make him a target for deportation officials. We’re not using the son’s name because of those risks, and are using the father’s middle name, José, because both men are in the U.S. without permission.

José’s son was diagnosed with schizophrenia and bipolar disorder last year and has faced barriers to getting affordable treatment, in part because he doesn’t have legal status. His untreated condition has led to scrapes with the law.

Mental health advocates say many people with untreated mental illness run the risk of cycling in and out of the criminal justice system, and the situation is particularly fraught for those without legal status.

“If he gets deported he’d practically be lost in Mexico, because he doesn’t know Mexico,” says José, speaking through an interpreter. “I brought him here very young and, with his illness, where is he going to go? He’s likely to end up on the street.”

Legal troubles

José’s son has spent several weeks in jail and numerous days in court over the past year.

On the most recent occasion, the young man sat nervously in the front row of a courtroom in the Champaign County courthouse. Wearing a white button-down shirt and dress pants, his hair parted neatly, he stared at the floor while he waited for the judge to enter.

That day, he pleaded guilty to a criminal charge of property damage. The incident took place at his parents’ house earlier that year. He had gotten into a fight with his brother-in-law and broke a window. His father says it was yet another out-of-control moment from his son’s recent struggles with mental illness.

Before beginning proceedings, the judge read a warning aloud — something that is now standard practice to make sure noncitizens are aware that they could face deportation (or be denied citizenship or re-entry to the U.S.) if they plead guilty in court.

The young man received 12 months’ probation.

After the hearing, he agreed to an interview.

Just a couple of years ago, he says, his life was good: He was living on his own, working, and taking classes at community college. But all that changed when he started hearing voices and began struggling to keep his grip on reality. He withdrew from his friends and family, including his dad.

One time, he began driving erratically, thinking his car was telling him what to do. A month after that episode, he started having urges to kill himself and sometimes felt like hurting others.

In 2018, he was hospitalized twice, and finally got diagnosed with schizophrenia and bipolar disorder.

José says that during this time, his son — who had always been respectful and kind — grew increasingly argumentative and even threatened to hurt his parents. The psychiatric hospitalizations didn’t seem to make a difference.

“He asked us for help, but we didn’t know how to help him,” José says. “He’d say, ‘Dad, I feel like I’m going crazy.’ “

José’s son says he met with a therapist a few times and was taking the medication he was prescribed in the hospital. He was also using marijuana to cope, he says.

The prescribed medication helped, he says, but without insurance, he couldn’t afford to pay the $180 monthly cost. When he stopped the meds, he struggled, and continued getting into trouble with the police.

Undocumented and uninsured

For people who are both undocumented and living with a mental illness, the situation is “particularly excruciating,” says Carrie Chapman, an attorney and advocate with the Legal Council for Health Justice in Chicago, who represents many clients like José’s son.

“If you have a mental illness that makes it difficult for you to control behaviors, you can end up in the criminal justice system,” Chapman says.

People with mental illness make up only a small percentage of violent offenders — they are actually more likely, compared to the general population, to be a victim of a violent crime.

Chapman says the stakes are extremely high when people without legal status enter the criminal justice system: they risk getting deported to a country where they may not speak the language, or where it’s even more difficult to obtain quality mental health care.

“It could be a death sentence for them there,” Chapman says. “It’s an incredible crisis, that such a vulnerable young person with serious mental illness falls through the cracks.”

An estimated 4.1 million adults under the age of 65 who live in the U.S. are ineligible for Medicaid or marketplace coverage under the Affordable Care Act because of their immigration status, according to the Kaiser Family Foundation.

Among them are those who are undocumented and other immigrants who otherwise do not fall into one of the federal categories as lawfully in the U.S. People who are protected from deportation through the federal government’s Deferred Action for Childhood Arrivals policy, or DACA, also are ineligible for coverage under those programs.

For many people in all those groups, affordable health care is out of reach.

Some states have opened up access to Medicaid to undocumented children, including Illinois, California, Massachusetts, New York, Oregon, Washington and the District of Columbia, according to the National State Conference of Legislatures. But they lose that coverage at age 19, except in California, which recently expanded eligibility through age 25.

For those who can’t get access to affordable health insurance because of their undocumented status, medical care is largely limited to emergency services and treatments covered by charity care or provided by community health centers.

It’s unclear how many people have been deported because of issues linked to mental illness; good records are not available, says Talia Inlender, an attorney for immigrants’ rights with the Los Angeles-based pro bono law firm Public Counsel. But estimates from the ACLU suggest that tens of thousands of immigrants deported each year have a mental disability.

Inlender, who represents people who have mental health disabilities in deportation hearings, says when the lack of access to community-based treatment eventually leads to a person being detained in an immigration facility, that person risks further deterioration because many facilities are not equipped to provide the needed care.

On top of that, she says, immigrants facing deportation in most states don’t generally have a right to public counsel during the removal proceedings and have to represent themselves. Inlender points out that an immigrant with a mental disability could be particularly vulnerable without the help of a lawyer.

(Following a class-action lawsuit, the states of Washington, California and Arizona did establish a right to counsel for immigrants with mental illness facing deportation. For those in other states, there’s a federal program that tries to provide the same right to counsel, but it’s only for detained immigrants who have been properly screened.)

Medicaid for more people?

Chapman and other advocates for immigrants’ rights say expanding Medicaid to cover everyone who otherwise qualifies — regardless of legal status — and creating a broader pathway to U.S. citizenship would be good first steps toward helping people like José’s son.

“Everything else is kind of a ‘spit and duct tape’ attempt by families and advocates to get somebody what they need,” Chapman says.

Critics of the push to expand Medicaid to cover more undocumented people object to the costs, and argue that the money should be spent, instead, on those living in the country legally. (California’s move to expand Medicaid through age 25 will cost the state around $98 million, according to some estimates.)

As for José’s son, he recently found a pharmacy that offers a cheaper version of the prescription drug he needs to treat his mental health condition — so he’s back on medication and feeling better.

He now works as a landscaper and hopes to get back to college someday to study business. But he fears his criminal record could stand in the way of those goals, and he’s aware that his history makes him a target for immigration sweeps.

José says his greatest fear is that his son will end up back in Mexico — away from family and friends, in a country he knows little about.

“There are thousands of people going through these issues … and they’re in the same situation,” José says. “They’re in the dark, not knowing what to do, where to go, or who to ask for help.”

This story is part of NPR’s reporting partnership with Side Effects Public Media, Illinois Public Media and Kaiser Health News. Christine Herman is a recipient of a Rosalynn Carter fellowship for mental health journalism. Follow her on Twitter: @CTHerman

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Updated at 3:10 p.m. ET

President Trump has made price transparency a centerpiece of his health care agenda. Friday he announced two regulatory changes in a bid to provide more easy-to-read price information to patients.

The first effort targets hospitals, finalizing a rule that requires them to display their secret, negotiated rates to patients starting in January 2021. The second is a proposal to make insurance companies show patients their expected out-of-pocket costs through an online tool. That proposed rule is subject to 60 days of public comment, and it’s unclear when it would go into effect.

“Our goal is to give patients the knowledge they need about the real price of health care services,” said Trump. “They’ll be able to check them, compare them, go to different locations, so they can shop for the highest-quality care at the lowest cost.”

Administration officials heralded both rules as historic and transformative to the health care system.

“Under the status quo, health care prices are about as clear as mud to patients,” said Center for Medicare & Medicaid Services Administrator Seema Verma in a written statement. “Today’s rules usher in a new era that upends the status quo to empower patients and put them first.”

As NPR has reported, hospitals are currently required to post their “list prices” online, but that information has been very hard to use and doesn’t tell consumers much about what they are likely to pay. The new rule makes hospitals show what they really pay for services — not the list prices — and requires them to make that information easy to read and easy to access.

“I don’t know if the hospitals are going to like me too much anymore with this,” Trump said in a White House news conference Friday afternoon. “That’s OK.” He later added, “We’re stopping American patients from just getting — pure and simple, two words, very simple words — ripped off. Because they’ve been ripped off for years. For a lot of years.”

The second rule Trump announced Friday (which is a proposed rule, still subject to public comments before being finalized) affects insurance companies. It would essentially make insurers give patients their “explanation of benefits” upfront. It would require insurers to explain how much a service would cost, how much your plan would pay and how much you would owe — before the service is performed. The idea is that patients could use that information to shop around ahead of time for a better deal — assuming a better deal can be found, and the service isn’t a medical emergency.

Certainly these rules would give patients more information than they currently have. The other promise of these rules — that they will bring down health care costs — is more of an open question.

In public comments for the hospital rule, hospitals argued that having to make their negotiated rates public would backfire — if a hospital is charging less than another one nearby, it could theoretically raise its price to more closely match its competitor’s.

Secretary of Health and Human Services Alex Azar dismissed that argument on a call with reporters Friday morning.

“This is a canard,” he said. “Point me to one sector of the American economy where the disclosure of having price information in a competitive marketplace actually leads to higher prices as opposed to lower prices.”

Larry Levitt, executive vice president of the Kaiser Family Foundation, pointed out on Twitter that the penalty for hospitals that defy Trump’s transparency rule was “quite weak.”

“A maximum fine of $300 per day,” he wrote. “The technical term for that is ‘chump change.’ I wonder how many hospitals will just pay the fine.”

There’s also an open question about whether these rules will survive legal challenges. Another Trump administration proposal to show drug list prices in television ads was blocked in the courts.

“We may face litigation, but we feel we’re on a very sound legal footing for what we’re asking,” Azar told reporters.

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The Democratic debate is less than a week away, and it’s likely that health care will once again take center stage. Once again, the candidates will spar over the best way to achieve universal coverage. Once again, the progressives will talk up the benefits of “Medicare For All” while the moderates attack it for its high cost and lack of choice. Just like the last debate. And the one before.

But it’s not the repetitiveness of the health care debate that bothers me. As a medical student, what bothers me is that the current health care debate is myopically focused on health insurance.

Although health insurance coverage is important, it’s only part of the picture. If the goal of our health care system is to keep Americans healthy, insurance will only get us so far. Health is about much more than access to health care.

Asthma triggers when you’re homeless

Take the case of a patient I helped treat this past summer, a young man in his early 20s who came into the emergency department experiencing severe shortness of breath. I could hear him wheezing before I even walked into the room.

He was sitting on the stretcher, breathing rapidly, and leaning forward with his hands on his knees — the classic “tripod” position signifying respiratory distress. After the resident physician and I determined he was having an asthma attack, we controlled his symptoms with steroids and inhalers and monitored him until he improved.

As I was preparing to discharge the patient, I briefed him on some of the asthma triggers he should avoid. When I advised him to keep the windows closed to minimize his exposure to pollen, he told me that the shelter where he was staying didn’t have air conditioning. It was 83 degrees outside that day.

Health insurance couldn’t prevent his next asthma attack. He needed a better and more stable housing situation.

Food deserts and no ride to the doctor

The same was true for a second patient of mine who was admitted to the hospital with diabetic ketoacidosis, a life-threatening complication of diabetes resulting from poor blood sugar control. After he recovered, we discharged him home to a food desert, a neighborhood where grocery stores and fresh-food markets are scarce and where following a low-carbohydrate diet is next to impossible. Health insurance cannot solve the food insecurity in his community.

Nor could health insurance enable a third patient of mine — who’d had vascular surgery to re-open a blocked artery in his leg — to return for his follow-up visit. Had he done so, we would have caught his post-operative infection early. As it happened, however, he had no way of traveling the 15 miles from his home to our clinic, and his infection worsened to the point that we had to amputate two of his toes. Health insurance didn’t address his transportation barriers.

Fortunately, all three patients were insured. Indeed, I’m grateful to attend medical school in Massachusetts, which has achieved near universal health insurance coverage. But sometimes insurance isn’t enough. I constantly see cases like these in which acute health problems arise due to factors seemingly unrelated to medicine. Universal coverage, while a worthy goal, does not translate into universal health.

Who will fix holes in the social safety net?

A recent study that rated U.S. counties based on health outcomes found that access to medical care accounted for only 20 percent of a county’s score. The other 80 percent was more readily attributable to social and economic factors like the ones affecting my patients, including housing instability, food insecurity, and access to transportation.

The health care dialogue in this political race has been dominated by the notion that we need to cover everyone, a principle I fully support. But even if we achieve that, it will only get us a fraction of the way to our goal of better health for all Americans. The German health care system is widely praised for its universal coverage, robust primary care, and low out-of-pocket costs for medical care. But it is nonetheless plagued with health disparities. In some cities, life expectancies of neighboring communities differ by up to 13 years.

To neglect these social factors in our public discourse on health care would be a mistake, not only because they are important to public health but also because policymakers are often better equipped to tackle social factors than they are medical ones. Evidence suggests that providing stable housing to homeless populations in urban areas, for instance, contributes to significantly reduced mortality.

Insurance coverage is a critical determinant of health. We should discuss it. But candidates for president should also discuss their plans to strengthen communities by addressing homelessness, food insecurity, and the other social factors that underpin America’s health gap.

Thus far, these issues have received scant attention in the Democratic primary race and in the larger political dialogue about health care. We need to broaden the conversation from a narrow discussion of health insurance to a holistic conversation about health.

Suhas Gondi is a third-year medical student at Harvard Medical School. A version of this essay originally appeared in Undark, the online science magazine.

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