Iowa CITY, Iowa (AFP) – Margaret Tillotson is on her way 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 only weighed 113 pounds.
Now, her health has improved and she is back in school, thanks to what she calls the lifesaving inpatient program at University of Iowa Hospitals and Clinics for patients with eating disorders.
“I wouldn’t be here if this program didn’t exist,” said Tillotson, who has been accepted into the program six times in the past three years.
But after hospital officials announced plans to phase out the program later this fall, Tillotson is concerned about her ability to access a higher level of care if she relapses.
Patients and health care providers say the 13-bed inpatient unit is the only program of its kind in Iowa, and closing it could lead to unequal access to treatment.
Patients “will have to get out of the situation, or they won’t get treatment at all,” said Dr. Sarah Schwatkin, a Fort Dodge psychologist who specializes in treating eating disorders.
The Des Moines Record Reports suggest that patients facing this possibility include people like Tillotson, who rely on Medicaid for health care coverage. The state insurance program has historically refused to cover members for care in out-of-state programs such as those in Omaha, St. Louis, and the Twin Cities.
The cost of care varies by patient condition and length of stay, among other factors, but experts estimated that residential care was about $1,237 per day in 2018 and 2019, according to a report from the Harvard T.H. Chan School of Public Health.
Tillotson, who is registered with Iowa Total Care, said she has been denied coverage of eating disorder programs outside Iowa “more times than I can count.”
“I don’t know where I’m going,” she said. “My family can’t pay out of my pocket to get out of state.”
Peggy Nopolos, UIHC’s chief of psychiatry, said University of Iowa Hospitals stopped admitting patients to the unit last week.
She said current patients will continue on the residential program until they have completed treatment and are discharged from the hospital.
Nopolos said the residential program served 125 people in the past fiscal year.
The Inpatient Eating Disorders Program cares for the most severe patients whose disorders put them at risk, both medically and psychologically.
Typically this includes patients with life-threatening illnesses, such as malnutrition, who require around-the-clock medical care and behavioral health support.
Many patients with eating disorders also have other mental health conditions, such as anxiety and depression.
A 2020 report from Harvard University estimates that 9%, or 28.8 million, Americans will experience an eating disorder in their lifetime. The report also estimates that 10,200 deaths occur each year as a direct result of eating disorders.
UIHC’s Eating Disorders Program will continue to offer outpatient services and a partial hospitalization program, which includes structured therapy sessions on weekdays.
Officials said in a statement that patients requiring acute care would be taken to hospital.
Ultimately, UIHC officials made the decision to phase out the residential program due to the overwhelming demand in Iowa for more mental health care, Nobulus said.
According to hospital officials, the Iowa City health care system is seeing “unprecedented numbers of people with acute mental health crises arriving at our emergency department.” They did not provide exact numbers.
This is compounded by the fact that Iowa ranks among the worst in the country in terms of the few inpatient mental health beds per resident, Nopolos said. Iowa has about 24 psychiatric beds for every 100,000 residents, according to a 2021 study in the International Journal of Environmental Research and Public Health.
To help alleviate this strain, an eating disorder inpatient unit designated for patients with a wide range of acute behavioral health needs will open later this fall.
By doing this, the hospital will be able to serve more patients each year. The average inpatient condition for acute behavioral health patients is about 10 days, Nobulus said, while residents of the eating disorder program receive treatment that lasts for “several months.”
“An entire 30 percent of our adult psychiatric beds are dedicated to inpatient care for our eating disorder program, and opening these beds to public acute mental health care will allow us to serve nearly three times the population of Iowa,” Nobulus said.
Only four patients remain in the inpatient program as of Sunday, April Bannister, according to the unit’s current patient told the Des Moines Registry.
Bannister, a 22-year-old from Iowa City, has participated in the program seven times since February 2021. She was most recently accepted on July 20 after her therapist found out she had lost weight.
When hospital leadership announced at the September 1 meeting that they would phase out the program, Bannister said she saw many employees cry. Her social media posts about the meeting helped create a profile change.org The petition has garnered nearly 7,500 signatures as of Monday.
The petition contains dozens of comments from former patients and family members of patients who participated in the program, raising alarms about the phase-out and a call for hospital leadership to salvage the inpatient program.
One commentator, Angela Kirchner, said her daughter nearly died of anorexia, adding that it was “extremely difficult to find a cure”.
“This is a devastating loss for the many who are suffering, both patients and families,” she wrote. “We need more mental health treatment in Iowa, not less.”
The Iowa Eating Disorders Coalition raised similar concerns in a letter to University of Iowa Hospitals last week requesting additional information about the hospital’s future steps to provide care for patients with eating disorders.
“In addition to advocating for eating disorder treatment resources within the state, our long-term plan is also to increase our advocacy efforts to address the appalling refusal to cover out of state for higher levels of care,” coalition officials said in the statement. Letter submitted to the Des Moines Register.
“We also plan to discuss concerns and encourage treatment coverage with Iowa 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 efforts to reach more patients.
But she believes the way to get more family “isn’t to get rid of the eating disorder program.” She worries that eating disorder patients who can’t travel out of state will be hospitalized without getting the intensive treatment they need.
“Without therapy and therapeutic meals, this program would be nothing,” Bannister said. “If you take those resources and put them in the hospital, yes, you’re stabilizing them medically, but you’re not going to solve any underlying issues.”
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