November 21, 2015 Marion MacDonald

Breaking the Silence

A mother struggling to save her daughter's life becomes a powerful advocate for the Anna Westin Act

Linda Downey (fourth from left) and members of the Eating Disorders Coalition outside Congressman Joseph Kennedy's office in Washington D.C.

We are so proud of Emaleigh and her family! After years of struggling in silence, Emaleigh's mother, Linda Downey, decided go public when her insurance company refused to cover the cost of Ema's continued treatment at Mirasol. She traveled to Washington D.C., last month to advocate for the Anna Westin Act, which would mandate better insurance coverage for eating disorders, and took part in the MOM March Against Eating Disorders on the West Lawn of the U.S. Capitol. Seth Moulton, her local Congressman, said he has signed on as a co-sponsor of the Westin Act "due to the advocacy of Linda Downey." Here's the full story from a November 19, 2015, article by Paul Leighton in the Salem News:

BEVERLY — For years, the Downey family was not allowed to even mention the word "anorexia."

Emaleigh Downey was diagnosed with the eating disorder when she was 12 years old. She lost weight, missed school, suffered anxiety and depression, and became increasingly isolated.

"People don't understand eating disorders so I tried to pretend like I was normal," she said. "But having to keep everything in check and trying to participate in normal life activities was pretty much impossible. It took away any chance of me having a normal, functional life."

After eight years, the self-imposed silence is ending. The family is now speaking out on behalf of proposed federal legislation that would improve training and awareness of eating disorders and provide the same insurance coverage that other illnesses receive.

Linda Downey, Emaleigh's mother, traveled to Washington, D.C., last month to join advocates for the bill, called the Anna Westin Act. She took part in the MOM March Against Eating Disorders on the West Lawn of the U.S. Capitol and joined advocates to lobby members of Congress.

Linda Downey called her new-found advocacy "very empowering." "After eight years of feeling alone, I feel like I've kind of stepped out of myself for the first time," she said.

She was motivated to go public when her insurance company refused to cover the cost of Emaleigh's continued treatment at a residential program in Arizona.

Emaleigh, now 20, was attending Keene State College when her health began to decline significantly. She had attended six previous treatment programs in the Boston area with little success, so the family found a longer-term option, the Mirasol Eating Disorder Recovery Center in Arizona.

Sleepless in their hotel room in Tucson on the night before Emaleigh checked into the center, Linda Downey feared her daughter would not survive. She was so underweight that bones were protruding under her skin and her heart rate was in the 30s.

"I was terrified she wouldn't make it through the night," Linda Downey said. "I couldn't wait for daylight to get her to a safe place."

At Mirasol, Emaleigh said she developed a healthy relationship with her body through a form of therapy called trauma-releasing exercises. "I think what I found most helpful was that I was actually treated like a human," she said.

After five months at Mirasol, Emaleigh's treatment was interrupted by a letter from her insurance company announcing it would no longer pay for her stay there. The letter said that because Emaleigh had gained weight, her eating disorder was no longer "immediately life-threatening."

The Downeys say that interpretation epitomizes the misunderstanding that surrounds anorexia and other eating disorders. According to the National Eating Disorder Association, an eating disorder is a "bio-psychosocial" condition that must be treated as both a medical and mental health illness.

Linda Downey said the insurance company assumed Emaleigh was healthy based on the fact she had gained weight, without considering a variety of other factors.

"Just when the person is getting their footing, they're done," she said. "Weight restoration is only part of it. It's a much, much bigger, more complicated illness."

The Downeys filed multiple appeals with the insurance company, including a letter from Emaleigh's therapist saying if she were sent home too soon, it "could mean death for her." The insurance company still refused to pay for her continued stay.

The family took out a home equity line and paid for the final month of Emaleigh's treatment in Arizona themselves. They are also using her college money to help pay for her outpatient care now that she's home.

Advocates of the Anna Westin Act — named in honor of a young woman with anorexia who committed suicide in 2000 — say the legislation would mandate better insurance coverage for eating disorders. It would also provide training for health professionals, school personnel and the public to identify eating disorders and intervene early, and require the federal government to study the harmful effects of altered body images in advertising.

Congressman Seth Moulton of Salem said he has signed on as a co-sponsor of the Westin Act "due to the advocacy of Linda Downey."

On Downey's visit to Washington, Moulton's office had canceled an appointment with the Eating Disorder Coalition due to a scheduling conflict. But Downey decided to stop by his office on her own to drop off a packet and ended up meeting with one of Moulton's assistants.

"This is how democracy should work," Moulton said. "No big-money lobbyists, just a concerned mother who wants to make life better for those suffering with an eating disorder. I hope my support for the bill can make a difference." 

Emaleigh Downey said she is "in recovery," but her battle with anorexia will be a long struggle. Whatever happens, she is tired of keeping her secret. Like her mother, she said she plans to become more involved in speaking out and advocating for people with eating disorders.

"I'm sick of lying to people and holding back," she said. "Secrets keep you sick."