An act propelled by two Minnesota senators seeks to improve the plight of those suffering from eating disorders and prevent future cases from starting.
The Freed Act would allocate research money to the National Institutes of Health to better investigate the causes of eating disorders and improve treatment methods. The research would also seek to improve public data on eating disorders, including morbidity and mortality rates.
The act was sponsored Sen. Al Franken, D-Minn., and recently introduced by Sens. Amy Klobuchar D-Minn., and Tom Harkin, D-Iowa.
“The fact is, we don’t know nearly enough about diagnosing, treating and preventing these diseases,” Franken wrote in a statement. “Today’s legislation is a major step forward in understanding eating disorders and how to stop them from destroying lives.”
When patients with less obvious eating disorders visit their doctors, it’s not uncommon for them to hear lines like “You look great, I wish all my patients looked like you,” said Jeanine Cogan, policy director of the Eating Disorders Coalition.
“People who were appropriately trained on the symptoms of eating disorders would know that telling someone they look great is the worst thing you could say,” she said, “because it totally dismisses the fact that they’re really sick.”
For Cogan, ignorance surrounding eating disorders among health care professionals is one of several indications of the need for legislation that will alleviate and prevent them.
“If medical professionals don’t get that, and they instead respond out of ignorance or stigma, then they do harm,” she said.
The House version of the bill, sponsored by Rep. Patrick Kennedy, D-R.I., was introduced last year.
Klobuchar said she was inspired to work on the issue after meeting Kitty Westin, a Minnesota native whose daughter, Anna, died of anorexia 10 years ago.
“When you talk to her, it’s very hard to think that we don’t need to do more about this. We do,” she said.
At the University of Minnesota, about 5.3 percent of students reported struggling with an eating disorder, according to a 2007 Boynton Health Service survey.
Of those, 2.4 percent said they had been diagnosed with anorexia in their lifetime and 1.8 percent with bulimia.
The NIH spends about $1.20 in research funding per person with an eating disorder compared with $159 for someone with schizophrenia, which has a much lower incidence rate, said Jillian Croll, director of education, research and program development for the Emily Program, a Minnesota company that offers comprehensive eating disorder treatment.
“That just gives a sense of how little research money there is in eating disorders,” she said.
Much of the bill centers on insurance coverage. The Senate version would require Medicaid to cover eating disorders.
This is a vital component to the bill, Cogan said, recounting the story of a Pennsylvania woman who died of an eating disorder two days ago. She received Medicaid but could not get treatment because the assistance program didn’t provide coverage for her disorder.
“She really wanted treatment,” Cogan said. “She was actively trying to get better.”
That could place a large burden on care providers, who would receive a dramatic reduction in compensation for their services through Medicaid, Croll said.
“It’s like asking a cancer center that usually provides treatment that costs $1,000 to do that for $100,” she said. “That’s sometimes how different the Medicaid reimbursement rate is than what it actually costs to deliver the care.”
With federal health care reform working to improve Medicaid reimbursement, Klobuchar said she doesn’t see that being a problem.
“I’m more concerned about kids dying from anorexia,” she said. “Unlike some things – like cancer – there might be some really clear things we can do if we get our act together to stop girls from developing eating disorders, or for that matter, boys.”
The House version of the bill includes more dramatic insurance coverage provision, requiring that all insurers who cover physical health also provide coverage for eating disorder treatment.
The bill’s Senate version would create patient advocacy groups that would support them as they navigate complex insurance issues that arise from denial of care.
“We’ve had interactions with insurance companies who are frankly despicable in that practice of saying, ‘You have that benefit, but can’t use it,’ ” Croll said.
Under the bill, all federally funded obesity programs would also need to address eating disorders.
The bill would also establish a grant program to train health care professionals – in school and in the workplace – how to appropriately address eating disorders.
“Most physicians get between zero and two hours of eating disorder education in medical school,” Croll said. “Yet they often are on the front lines of screening or assessing someone with an eating disorder, and they just don’t have enough information.”