‘The eating disorder is the tip of the iceberg’: Survivors try to get Congress on their side
Johanna Kandel endured a 10-year war with anorexia, bulimia and binge eating disorder. Now she’s talking policy
Just after 12:30 p.m., right in the thick of lunchtime, we elbow our way into the busy Longworth Cafeteria. It’s Johanna Kandel’s lunch break, so she orders a Diet Coke and a substantial salad packed with chicken, tomatoes, peppers and “lots of cheese.”
“I’ll probably get a coffee and a cookie after,” she adds.
It’s a pretty typical chick-chat (what I cleverly call a chat between chicks) — aside from the fact that Kandel, who’s enjoying food right across from me, once endured a 10-year war with anorexia, bulimia and binge eating disorder. Today, she’s a fully recovered author and advocate for others overtaken by similar mental illnesses.
“For me the line in the sand between disordered eating and an eating disorder has been when you can no longer do life,” she says.
Her organization, the Alliance for Eating Disorders Awareness, is just one of many member groups within the Eating Disorders Coalition that converged on the Hill on Tuesday for their annual advocacy day.
It’s hardly the first visit to the Capitol for Kandel, who has been advocating in D.C. for 17 years. The routine is familiar: Long walks down endless hallways. Lightning-fast meetings with harried but receptive staffers. Fifteen minutes to tell your story, pivot to policy and hope that something sticks.
The goal this year is to push for the Nutrition CARE Act, a yet-to-be-introduced bill that would extend nutrition therapy to recipients of Medicare struggling with eating disorders.
The effort already has the backing of Democratic Rep. Judy Chu, and Kandel is hoping to get some momentum going.
“You can’t just have a general mental health provider. You need someone who’s specialized,” Kandel says, stressing the importance of targeted care. “The eating disorder is the tip of the iceberg — it’s really underneath that you have to work on.”
First up on her list of lawmakers to visit is Mario Diaz-Balart, followed by Lois Frankel, Debbie Wasserman Schultz, Alcee L. Hastings and Ted Deutch. Most of them are out of the office, so she meets with aides instead.
Advocacy can be a slog, both for the people waving the pamphlets and the congressional staffers on the receiving end. But Kandel sees progress. She points to the recent 21st Century CURES Act as a victory, since it boosted eating disorder education for primary care providers.
As for her own story, she’s willing to tell it over and over, as many times as it takes. Last year, a casual conversation with a former congressman in a Rayburn Building elevator led to a phone call from the member days later seeking advice. His daughter had an eating disorder.
“The coolest part is when you go home and a few weeks later you notice that the member that you met with … agreed to co-sponsor the bill,” Kandel says. “That’s really the ultimate goal.”