When Robin Nelson sought treatment for her daughter’s serious eating disorder in 2019, she hit a number of walls.
Her adult daughter had left a 72-hour psychiatric hold but couldn’t get into a treatment program near her San Francisco home. The first available appointment was 32 days ahead.
Nelson instead found her daughter a program at an Eating Recovery Center in Colorado — but her daughter’s insurance provider said it would be out of network. She ended up taking it, using her retirement and pension money to pay for it.
“It's something that definitely needs to be covered, and if an insurance company does not have the support for or the availability and there isn't treatment available within a certain area, that there should be flexibility or understanding that these are life-and-death situations,” said Nelson, a peer mentor and recovered anorexic herself.
Lawmakers have offered at least four pieces of legislation that would address a problem that’s believed to have worsened during the pandemic for a multitude of reasons: anxiety, occasional food shortages, isolation from friends and family, in-person treatment that is less available, and a link between obesity and the severest cases of COVID-19.
One bill resulted from Facebook whistleblower Frances Haugen's release of documents last year showing that Instagram’s algorithms can lead to mental health issues and eating disorders in adolescent girls. Facebook and Instagram are part of a company that has since rebranded itself as Meta Platforms Inc.
As the pandemic deepened the problem and lawmakers work on it, getting treatment remains as much of a struggle as it was for Robin Nelson. Congress’ previous efforts focused behavioral health legislation on other types of diseases.
Eating disorders, or EDs, are a group of mental illnesses that most commonly include anorexia nervosa, bulimia and binge-eating disorder. Contradicting a common misperception, about a third of sufferers are male and the diseases can affect young children and seniors.
An estimated 28.8 million Americans develop an ED in their lifetime, and 10,200 die each year, according to a 2020 Harvard T.H. Chan School of Public Health report. Johns Hopkins estimates that 95 percent of people who have an ED are between the ages of 12 and 25.
The National Eating Disorders Association said it saw a 107 percent increase in contacts to its helpline from March 2020 through December 2021.
“Insurance companies really shouldn't be the ones deciding ‘are you sick enough?’ because young people are dying,” said Elizabeth Thompson, NEDA’s CEO, adding that there has been a focus nationally to come together on reducing substance use. “We need to do the same thing for eating disorders.”
Katrina Velasquez, managing principal of Center Road Solutions, said the pandemic was a perfect storm for eating disorders, which thrive in secrecy.
“The pandemic really dug a lot of folks either into an eating disorder or put them deeper into it,” said Velasquez, whose organization represents the Eating Disorders Coalition. “But now they're having to do what they've never had to do. They’re having to eat in public, which is really scary for someone with an eating disorder.”
Rising rates and diagnoses of these types of diseases have not led to an increased emphasis on screening for eating disorders in primary care settings. Most medical schools don’t offer elective training on the diseases.
“We know that most people with eating disorders do first come to primary care, but studies show that over 90 percent of primary care providers feel like they've missed these diagnoses,” said Ellen Fitzsimmons-Craft, an assistant professor of psychiatry at Washington University in St. Louis, whose research focuses on using technology to screen, prevent and treat eating disorders.
In a January report, the Labor, Treasury, and Health and Human Services departments showed gaps in coverage for treatment. Two large plans covered nutritional counseling for diseases such as diabetes but not for mental disorders like anorexia nervosa or bulimia.
“The real issue at the heart of all of it is the enforcement: What can happen so that insurance companies actually adhere to the rules and regulations and if they don't, what vehicle is there?” said Cari M. Schwartz, a partner with Kantor & Kantor, which is representing a separate class-action suit related to mental health parity violations connected to nutritional counseling in New York.
Advocates are coalescing behind four pieces of legislation that they say could best improve prevention, treatment and research efforts. But only one bill would address the gap in insurance coverage, and that would involve only those covered by Medicare.
Sens. Amy Klobuchar, D-Minn., Shelley Moore Capito, R-W.Va., Tammy Baldwin, D-Wis., and Thom Tillis, R-N.C., have offered a bill that would authorize $5 million per year for fiscal years 2023 to 2027 for the Center of Excellence for Eating Disorders to continue the training, intervention and treatment initiatives established in 2016. Part of the University of North Carolina, the center is funded through HHS.
Velasquez said the bill could expand training to pediatric models and LGBTQ and minority populations.
Connecticut Democrat Richard Blumenthal and Tennessee Republican Marsha Blackburn, the chairman and ranking member of the Senate Commerce Consumer Protection, Product Safety and Data Security Subcommittee, are sponsors of a measure that would require social media companies to give users under 16 the ability to protect personal information and block some addictive features.
It would also allow users to opt out of some algorithmic recommendations and require yearly audits of social media companies to monitor the risk to youth and allow academic and advocacy groups the ability to use certain company data for safety research.
Thompson said social media algorithms can have negative consequences when someone is dealing with societal issues. The further down the rabbit hole you go, the more easily a diet plan could lead to dangerous results like cutting, she said.
“It would make it a lot harder for the person to kind of go through stuff,” she said, speaking in favor of the bill. “I think there's collective energy to get that one done. That should be a very easy lift.”
Senate Commerce hasn’t scheduled a markup of the Blumenthal-Blackburn bill.
Reps. Judy Chu, D-Calif., Jackie Walorski, R-Ind., and Lisa Blunt Rochester, D-Del., and Sens. Maggie Hassan, D-N.H., Lisa Murkowski, R-Alaska, and Capito have introduced a bill that would add Medical Nutrition Therapy, or MNT, as a covered benefit for people with an eating disorder under Medicare Part B. MNT provides an individual with a diet plan and education from a registered dietitian, but Part B only covers it for diabetes patients.
Eating disorders among seniors can be especially dangerous because of an increased risk for other comorbidities.
“There are many individuals who are older, not just in their 20s, that should have availability to assessments and modalities to treatment,” said Nelson, who is 68 and mentors a 60-year-old patient.
Sens. Cynthia Lummis, R-Wyo., and Klobuchar and Reps. Kathy Manning, D-N.C., and Vicky Hartzler, R-Mo., are the lead sponsors of bipartisan bills that would update existing law for local school wellness programs to incorporate mental health resources, including eating disorder prevention. Schools that provide free or subsidized lunches are currently required only to develop goals for physical activity and nutrition.
Congress came to eating disorders relatively recently. A 2016 law was the first to include provisions on eating disorders. The provisions increased education and training related to EDs and increased parity surrounding coverage of treatment.
The fiscal 2022 National Defense Authorization Act included language from an eating disorder recovery bill that would expand the eligibility for treatment under TRICARE from ages 20 to 64 and would provide training to military health providers to identify and provide referrals for these disorders. TRICARE is the health care program for active-duty military personnel.
Compared with the general population, military personnel and veterans are more likely to use diuretics and laxatives or excessively exercise.
Anne Marie O'Melia, the chief medical officer and chief clinical officer for Eating Recovery Center, a health care system focused on treating these diseases, said the primary risk factor for developing any eating disorder is dieting.
“It used to be fairly unusual to be hearing third graders talk about their body image,” said O'Melia, a pediatrician and child psychiatrist. Now “you have third graders getting onto Instagram, and you know and having access to this glorified version of fitness and unrealistic goals with regard to how they want their body to look.“
If you or anyone you know is struggling with an eating disorder, please call the National Eating Disorders Association’s Helpline at (800) 931-2237 or text “NEDA” to 741741 to be connected with a trained crisis volunteer.