Australia’s former Vogue Editor Kirstie Clements shocked the nation this week when she revealed the inside life of fashion models, explaining a world where women eat tissue papers to curb hunger pains while maintaining dangerously low weight levels.
In the U.S., more than 10 million women suffer from anorexia or bulimia nervosa, considered the most deadly of all mental illnesses, according to the South Carolina Department of Mental Health. Nearly 10 percent of all those diagnosed with anorexia die within 10 years. Among adolescents, it’s the third most chronic illness in America.
Patti Lawrence, a former British model in the 1980s, knows the illnesses all too well. Now 47, she struggled with eating disorders throughout her modeling career. She went through a cycle of starving herself and overeating. At age 34, Lawrence hit a breaking point, prompting her to seek help.
“It was like some kind of horror story,” Lawrence told health journalist Colin Brennan. “ I remember standing naked in front of the mirror in the hotel bathroom and thinking: ‘My god, how can anyone come to this?’ I was so thin, you would wonder how I could even stand up. I also had other symptoms of anorexia — severe tiredness, palpitations and inappropriate hair growth.”
Emily Program’s Community Outreach Coordinator Keri Clifton wasn’t shocked by the scenario Clements painted. The organization, considered one of the largest outpatient eating disorder operations in the nation, exists to assist those struggling with eating and body image disorders — and lobby on behalf of a mental illness that, according to Clifton, is all too often swept under the rug.
The way in which Americans, lawmakers and insurance companies look at the epidemic is starkly different from the way other mental health issues are addressed.
“We (even) go to professional conferences, health conferences, and people will walk by and pat their bellies and say, ‘Oh, I wish I had one of those for the day … for a week so I could lose a few extra pounds,’ which tells me that they don’t understand the devastating impact that an eating disorder can have on a person’s life,” Clifton told Mint Press News.
Funding for anorexia research is minimal, with just $2 million of public funds spent in 2009 — this is compared to $243 million spent that same year on digestive diseases and $135 million spent on drug abuse research, another mental health disease, according to the U.S. Department of Health and Human Services.
“The amount of funding they get in terms of research dollars is exponentially larger. So, I think we still think eating disorders, in general, are a choice, they’re a lifestyle. But that’s just not the case. They’re a biologically-based illness. They are a complex illness,” Clifton said.
Research and funding for schizophrenia impacts an eighth of the individuals who struggle with eating disorders, yet it receives exponentially more funding than research related to anorexia.
“I think we still have a hard time grasping the differences between, say, physical health and and mental and emotional help,” Clifton said. “Legally, we have mental health parity, meaning treatment for someone with a physical issue should be matched for someone with a mental health issue, but unfortunately we still have this stigma around mental health.”
Struggling for care
The National Association of Anorexia Nervosa and Associated Disorders (ANAD) released a study indicating that up to 10 percent of those suffering from anorexia die within 10 years. That percentage increased to 20 percent over the course of two decades.
Yet only 1 in 10 people receive treatment for the disease, largely because of a lack of comprehensive care included in common health insurance packages. According to the Emily Program, nearly 15 percent of patients are denied coverage in Minnesota.
A 2010 survey by the ANAD indicated that 96 percent of eating disorder professionals claimed their patients’ lives were put at risk because insurance policies denied coverage, causing early discharge and increasing the risk of rehospitalization.
Much of the work that has been done to advocate insurance coverage of anorexia was sparked by the mother of Minnesota native Anna Westin, who died of anorexia in 2000 after her insurance company denied medical coverage of her disease.
“Anna died of her eating disorder really after being denied the care that she needed that would have saved her life,” Clifton said.
In an interview with PBS News, Kitty Weston explained the agony she and her family experienced when her daughter was denied coverage — and when her daughter died after that denial of coverage.
“The insurance company, who had never talked to Anna, had never seen her, didn’t really know anything about her, said that it wasn’t medically necessary, which is obscene,” Anna’s mother, Kitty Weston, told PBS. “It makes me very, very angry. Anna had a disease they didn’t want to even hear about.”
Westin sued Blue Cross and Blue Shield for the denial, which ultimately led to a settlement. That settlement set a precedent other insurance companies began to follow. Yet since that time, insurance companies have begun to undo the progress made.
Progress with insurance companies to treat eating disorders has been made, although those working in the field say insurance companies have slowly moved away from comprehensive funding. Rather than progressing with advocacy, they’ve begin to take steps backwards.
“We’ve seen an increase in denials,” FREED Foundation Prevention Coordinator Gail R. Schoenbach told the New York Times in 2011. “Now, I go to bed every night and I can’t answer all the emails I get. It’s heartbreaking.”
Insurers have rolled back coverage, citing costly treatments reaching an upwards of $1,000 per day.
“They’re finding ways to tighten their belts, to cover this … not that and, unfortunately, with all the progress that we had made, people are still being denied the care that they need,” Clifton said.
Insurance companies justify their lack of coverage by indicating there’s no proof that treatment works, citing a lack of studies proving residential care is effective.
It’s that “catch-22” that is frustrating for people like Cliffton. While treatment is proven to be successful, there is a lack of funding for research — the lack of acknowledgement, lack of funding and lack of insurance are all connected.
Provisions in the Affordable Care Act have removed the cap for mental health and implemented the Pre-Existing Condition Insurance Plan, which has opened up mandated coverage for eating disorders. Yet there’s still a long way to go. Just how long is up in the air, yet Clifton is confident a decade will make all the difference in the world.
Legislation, regulation
In 2011, Sen. Tom Harkin, a Democrat from Iowa, introduced the Federal Response to Eliminating Eating Disorders (FREED) Act, a comprehensive bill that addressed research, education, prevention and treatment.
Support for the bill came primarily from the Democratic party, with nine co-sponsors, including Amy Klobuchar of Minnesota and John Kerry of Massachusetts. Introduced in the Senate Committee on Health, Education, Labor and Pension, the bill did not make it out of committee.
The Emily Program has been intimately involved in Harkin’s efforts, working with other leading eating disorder treatment and advocacy organizations around the nation to lobby for comprehensive reform.
“The Eating Disorder coalition, which we’re a member of, lobbies annually — twice a year — with legislatures to have them sign on to the bill. In general, I think legislators have a hard time with legislation around specific illnesses,” Clifton said.
Eating disorder advocates are working to break through that mental barrier. While half of Americans know someone with an eating disorder, it is still not viewed in the same light as other mental illnesses, including drug and alcohol addiction, which has just recently begun to be more widely accepted as such.
Yet, like any other mental disease, Clifton said it should be of concern for lawmakers because it’s deadly — and it’s not going away. Lack of investment in education, prevention, research and treatment is also costly. Inpatient treatment for those who are severely suffering from eating disorders, whose lives are at risk, can reach $30,000 a month, according to Mirasol, an eating disorder advocacy and treatment organization.
“It’s a growing, growing issue, and if we don’t do something, it’s not going to get any better,” Clifton said.
Advocates are not giving up hope that legislation will prevail, yet that’s not the only action government can take to address the problem, according to Clifton.
“You could certainly have better regulations around the media,” she said.
Clifton references legislation in the United Kingdom as a model for what could happen in the United States. The UK’s Advertising Standards Authority has taken a forward movement on this issue, already banning two ads which were considered exceedingly airbrushed.
As of Jan. 1, Israeli models must prove they have a body mass index of 18.5 before they’re given permission to participate in runway shows.
There was a movement in the U.S. to create similar anti-photoshop legislation, known as the “Self Esteem Act,” but the action didn’t go beyond a petition.