This series was supported by The Pulitzer Center. This story is the last of the four-part series.
Geography doesnʻt seem like it should play a role in the landscape of eating disorders treatment, but in fact families and patients living in rural areas, small towns and cities, and less populated states have far less recourse when it comes to treatment options than those on the East and West coasts and big cities in between.
Thatʻs the reality Todd and Kimberly Peterson* faced in 2019 trying to get help for their daughter Brittany, who was diagnosed with anorexia at 13. (*MindSite News has changed their names to protect their confidentiality at their request.)
“Sioux Falls has about 250,000 people, and at that time there was just one person we could find that was seeing patients with eating disorder issues,” Todd said. Working with that therapist, they put a family-based treatment plan into action, but Brittany lost weight rapidly over the next few months.
“At that point, the therapist recommended doing inpatient hospitalization or residential treatment, and she was pretty serious about it,” said Todd. “She said if we don't do this, she was afraid Brittany might not make it through.”
That was when the Petersons discovered that there wasnʻt a single residential treatment center in the entire state. After an extended search, they found a placement in Chicago, a nine-hour drive away. The distance became even more problematic when Brittany was stepped down to partial hospitalization (PHP), requiring Kimberly to take a leave of absence and find an apartment in Chicago while Todd remained in Sioux Falls caring for the coupleʻs other two children.
“What a hard time of life to be completely isolated only because you don't have treatment in your own hometown,” Kimberly said “She was so young to be so far from home. It was really hard on her.”
The dearth of local treatment options again came into play again when Brittany completed outpatient treatment and returned home four months later.
“She was still actively battling her eating disorder all of that next year and she didn't have a group that she could go to here, whereas in Chicago she had gotten so much peace and comfort from having other girls who knew what she was going through,” said Kimberly. “And we as parents had no support group.”
Research conducted by the EAT Lab at the University of Louisville and Project HEAL in Maryland shows that the Pettersonsʻ experience is not uncommon. A survey of eating disorder patients between January 2021 and June 2022 found that 34% of eating disorder patients were unable to find a treatment provider nearby, while 19% had no treatment centers available in-state.
“It’s a tragedy how we’re not serving our farmers, our rural communities,” said Faith Carlson, who became Brittany’s therapist and then opened her own disorders treatment practice, Victus Recovery, in Sioux Falls.
“Our Native American populations on our reservations have zero coverage, none. Thereʻs nobody helping, no access to resources. This is an untouched population and it’s alarming.”
With a background in nonprofits and community clinics, Carlson was determined to take Medicare and Medicaid when she set up her clinic.
“I went through the process of becoming approved, and then I submitted the claims for six months, and not one of my claims got reimbursed," she said. "I wasn't going to send these patients to collections. I wasn't going to ask for money from people who are already struggling. So I had to make the very hard decision to stop accepting public insurance in order to build my business and keep the clinic open.”
In a written statement, Chris Bond, a spokesperson for America’s Health Insurance Plans (AHIP), an insurance trade association, noted that health plans follow the latest guidelines on reimbursement.
“Data on denials rarely take into account the overwhelming number of claims that are submitted from doctors that have extensive gaps in the accuracy and completeness of information provided, meaning health plans are regularly having to follow up to confirm correct billing and diagnostic codes” as well as proper treatment, he wrote.
In addition, Bond wrote that states, employers, and federal regulators “ultimately have an outsized and often final say on what benefits are included for consumers… Every aspect of insurance is regulated or reviewed by state insurance commissioners and federal regulators.”
Melanie Haiken is an award-winning journalist who has written for Smithsonian, National Geographic, the BBC, CNN, AARP, Health magazine, MindSite News, Sierra magazine and the Washington Post, among others. She has a personal interest in this subject of eating disorders. “As the mother of a child who spent many years in treatment for anorexia and bulimia, I encountered these barriers myself. And in the parent support groups I attended, I shared the experiences of other families hit hard by the expense of treatment and the denials of insurance support."
