IOWA CITY, Iowa (AP) — Margaret Tillotson is on the path to recovery.
The 22-year-old Burlington woman has struggled with anorexia nervosa for years. During her lowest point, Tillotson — who is 5-foot-10 — said she weighed just 113 pounds.
Now, her health has improved and she’s back in school, thanks to what she described as a life-saving inpatient program at the University of Iowa Hospitals and Clinics for patients with eating disorders.
“I would not be here if this program did not exist,” said Tillotson, who has been admitted to the program six times during the past three years.
But after hospital officials announced plans to phase out the program later this fall, Tillotson worries about her ability to access a higher level of care if she relapses.
The 13-bed inpatient unit is the only program of its kind in Iowa, and its closure could result in inequitable access to treatment, patients and health care providers say.
Patients will “have to go out of state, or they will not access treatment at all,” said Dr. Sara Schwatken, a Fort Dodge psychologist who specializes in eating disorder treatment.
The Des Moines Register reports that patients facing that possibility include people like Tillotson, who rely on Medicaid for health care coverage. The state insurance program historically has denied members coverage for care in out-of-state programs such as those in Omaha, St. Louis and the Twin Cities.
The cost of care varies on the patient’s condition and length of stay, among other factors, but experts estimated residential care was around $1,237 a day in 2018 and 2019, according to a report from the Harvard T.H. Chan School of Public Health.
Tillotson, who is enrolled with Iowa Total Care, said she has been denied coverage for eating disorder programs outside Iowa “more times than I can count.”
“I don’t know where I’m going to go,” she said. “My family can’t afford to pay out-of-pocket for me to go out of state.”
University of Iowa Hospitals stopped admitting patients to the unit last week, said Dr. Peggy Nopoulos, chairperson and departmental executive officer of the department of psychiatry at UIHC.
Current patients will continue in the residential program until they complete treatment and are discharged, she said.
In the past fiscal year, the residential program served 125 people, Nopoulos said.
The inpatient eating disorder program cares for the most severe patients whose disorder has placed them at risk either medically or psychologically.
Typically, that includes patients who are experiencing life-threatening illness, such as malnourishment, and who require round-the-clock medical care and behavioral health support.
Many patients with eating disorders also struggle with other mental health conditions, such as anxiety and depression.
The 2020 report from Harvard estimates 9%, or 28.8 million, Americans will have an eating disorder in their lifetime. The report also estimates 10,200 deaths occur each year as a direct result of eating disorders.
The Eating Disorders Program at UIHC will continue to offer outpatient services and its partial hospitalization program, which includes structured therapy sessions during weekdays.
Patients in need of acute care will be admitted to the hospital, officials said in a statement.
Ultimately, UIHC officials made the decision to phase out the residential program because of Iowa’s overwhelming demand for more mental health care, Nopoulos said.
According to hospital officials, the Iowa City-based health care system is seeing “unprecedented numbers of people experiencing acute mental health crises arriving in our emergency department.” They didn’t provide exact figures.
That’s compounded by the fact that Iowa ranks among the worst in the country for few inpatient mental health beds per resident, Nopoulos said. Iowa has about 24 psychiatric beds per 100,000 residents, according to a 2021 study in the International Journal of Environmental Research and Public Health.
To help alleviate this strain, the dedicated eating disorder inpatient unit will open to patients with a wider range of acute behavioral health needs later this fall.
By doing so, the hospital will be able to serve more patients each year. The average inpatient state for acute behavioral health patients is about 10 days, whereas residents in the eating disorder program typically receive treatment that lasts “several months,” Nopoulos said.
“A full 30% of our adult psychiatric beds had been dedicated to the residential inpatient care for our eating disorder program, and opening those beds to general acute care mental health will allow us to serve roughly three times as many Iowans,” Nopoulos said.
Only four patients remained in the inpatient program as of Sunday, April Bannister, a current patient in the unit told the Des Moines Register.
Bannister, a 22-year-old from Iowa City, has been in the program seven times since February 2021. She most recently was admitted July 20 after a therapist found she had dropped weight.
When hospital leadership announced in a Sept. 1 meeting they were phasing out the program, Bannister said she saw many staff members cry. Her social media post about the meeting helped generate a Change.org petition that has garnered nearly 7,500 signatures as of Monday.
The petition has dozens of comments from former patients and family members of patients who have been in the program, raising alarms about the phaseout and calling on hospital leadership to save the inpatient program.
One commenter, Angela Kerchner, said her daughter almost died of anorexia, adding that it is “incredibly difficult to find treatment.”
“This is a devastating loss for so many who are struggling, both patients and families,” she wrote. “We need more mental health treatment in Iowa, not less.”
The Eating Disorder Coalition of Iowa raised similar concerns in a letter to the University of Iowa Hospitals last week and asked for additional information on the hospital’s future steps to provide care for patients with eating disorders.
“In addition to advocating for in-state eating disorder treatment resources, our long-term plan is to also increase our advocacy efforts to address the appalling denial of out-of-state coverage for higher levels of care,” coalition officials said in the letter provided to the Des Moines Register.
“We also plan to discuss concerns and encourage treatment coverage with Iowa-based insurers, starting with Iowa Medicaid plans.”
Bannister said she understands the hospital’s decision to expand access to mental health care and supports the hospital’s effort to reach more patients.
But she believes the way to get more beds “is not to take away the eating disorder program.” She worries that eating disorder patients who can’t travel out of state will cycle through the hospital without getting the intensive treatment they need.
“Without the therapy and the therapeutic meals, this program is nothing,” Bannister said. “If you take away those resources and put them in a hospital, yeah, you’re medically stabilizing them, but you’re not going to solve any underlying issues.”
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