Low-income Americans struggle to access life-saving treatment for eating disorders

The pandemic has exacerbated many mental health issues, and eating disorders are no exception: ER visits for girls with anorexia and bulimia were twice as high in January this year as they were were not three years earlier.

What has not kept pace is how government-funded insurance programs have responded to the crisis. Families are struggling to get adequate care on plans designed to help the very people who can’t afford the expensive treatments high-income Americans turn to.

The Covens family, who live just outside of Raleigh, North Carolina, found themselves trapped due to barriers to care. Their daughter Penny, who went from 90lbs to 63lbs in just three months when she was 12, was first admitted to hospital in June 2021 when her parents realized how bad she had become thin. Penny was so emaciated that hospital staff informed state child protective services that she was malnourished, prompting an investigation. Even so, the hospital sent Penny home the next day, saying there was not much they could do for her.

At the time, Penny was one of more than 38 million children in the United States whose families benefit from health insurance plans funded by federal and state dollars. The Covens didn’t earn enough to pay for private insurance, but their state-funded CHIP plan — a program for families who earn too much money for Medicaid — limited their options when it came to Penny’s care.

Penny suffered from severe anorexia. The hospital told his mother, Robin Sinton, that he was already “overwhelmed” with children in his psychiatric unit. Instead, Penny was put on a waiting list and told it would be months before she could hope to get therapy covered by her insurance plan. His plan also did not cover a dietitian, an essential part of treating anorexia. His insurance network’s inpatient eating disorder programs had no openings.

Illnesses like anorexia and bulimia have the second highest death rate of any mental health condition, behind only overdose deaths. They are also complex conditions that generally require a medical and psychological approach to care. But even with the Biden administration’s efforts to expand mental health services to young people, government-funded insurance plans are not required to cover treatment beyond what is deemed “medically necessary” in a hospital. And that’s a highly subjective call.

Bloomberg reached out to all 50 state health systems, asking for information about the types of treatment covered by state-funded programs for eating disorders. Of the 18 states that responded, including Penny’s home state of North Carolina, all said they were required to cover inpatient treatment and most outpatient services. But then the details get murky. Since coverage depends on medical necessity, a third-party organization is usually hired to weigh in. Several states that do not have in-state residential centers also do not cover out-of-state care.

Gregg Montalto, a pediatric eating disorder specialist at Lurie Children’s Hospital in Chicago, said more than half of his patients are covered by government insurance plans, which is a problem because many residential facilities for eating disorders of food do not take this type of insurance. “There are only glaring inequalities in access to care,” he said.

As her condition worsened, Penny traveled back and forth to various hospitals while her parents struggled to find a therapist or an insurance-covered residential facility.

It’s not uncommon. Sara Buckelew, director of the eating disorders program at the University of California, San Francisco, said her hospital has seen some of the same young patients readmitted more than 15 times. Hospitals are meant to be a safety net, they are not adequate places to receive treatment for months, added Jillian Lampert, chief strategy officer of Accanto Health, which runs treatment centers for mental disorders. food and acts as an advocacy group.

With nearly 2 million young people expected to have an eating disorder before the age of 20, the cost to the U.S. healthcare system is high, said Bryn Austin, founding director of the Strategic Training Initiative for prevention of eating disorders at Harvard Chan School of Public Health and Boston Children’s Hospital. According to a study co-authored by Austin and published in Deloitte Access Economics, eating disorders cost the US healthcare system an estimated $4.6 billion a year.

But the real financial burden extends beyond the health care system, with families bearing the brunt. Nearly a quarter of people with eating disorders sought care from a family member or close friend, the study found. Penny’s mother, for example, would like to find a job to help pay the family’s medical bills, but when her daughter came home from the hospital, she had to sit with Penny at mealtimes, making sure that she ate six times a day and was not purging. The total financial costs borne by people with eating disorders and their loved ones were $23.5 billion from 2018 to 2019, including $363.5 million in out-of-pocket payments for health care.

From the start, Robin fought to get more care than Medicaid would provide for her daughter. “The hospital is sending my daughter home this week. She eats no food, is on a tube, far from recovering and there is no place that will take the insurance. I don’t understand the point of having even the ‘residential’ part of the insurance if no one accepts it,” Robin wrote to the North Carolina Medicaid Ombudsman last October.

The Covens tried everything they could while Penny was home, but caring for a child with an eating disorder is often a losing proposition.

‘We literally sat and watched our daughter deteriorate as we waited for the end of the year’ at which point they might try to switch insurance plans to one that covered things like residential care, Robin said.

In the end, to get Penny into a facility Robin thought she could trust, the Covens uprooted their lives even further. By removing one of their other daughters, then 21, from their insurance plan and asking her to move out, they had one less dependent and would qualify for an income-based swap plan. Developed under the Affordable Care Act, these types of plans allow families to “shop around” for subsidized options available through public partnerships with private insurers. The Covens were able to secure a Cigna plan, which was still inexpensive, but gave them more options for Penny’s treatment.

More than a year after she was first admitted to hospital, Penny finally secured a place at a residential facility in Texas, more than 1,000 miles from her home. At the centre, Penny received the care she needed: 24-hour support, individual therapy and individualized nutritional advice. She is now back home with her family and attending a day program about 50 minutes away by car, which is covered by the Covens’ new insurance plan.

Yet rare family visits to the Texas facility required airfare and hotels, further straining the budget. And the center also asked for $7,000 upfront, the full amount of the Covens’ franchise.

“I’m sitting there saying, ‘Oh my God, it’s August. What if she doesn’t get better? What if we’re still in this loop next year and I pay seven grand every year in January?” Robin said. “We’re going bankrupt. This is madness.”

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