I mentioned in a Five Things Friday a few weeks ago that I’d be sharing more about lobbying with the Eating Disorders Coalition. Today I have a guest post from Matt Wetsel, a male Anorexia survivor and volunteer with the EDC. He contacted me a few weeks ago to help him out with a Virginia-based lobbying team. Matt has done extensive research, written award-winning papers, and knows a lot about the insurance disparities that those in need of eating disorder treatment face.
I’m really passionate about this stuff, especially after lobbying with NEDA last spring. Matt is teaching me even more about what’s going on at a federal level. It’s complicated and infuriating, but also full of hope. Get ready for some great info on what’s going on in Washington D.C. to help those suffering from Eating Disorders: If you’ve ever tried to get treatment for an eating disorder, there’s a good chance you know how difficult it can be. Despite the fact that eating disorders are often preventable and treatable, they are on the rise in all demographics and people are dying from them in record numbers. In fact, it’s estimated that 20% of all people who suffer from anorexia will die as a direct result of their eating disorder. Despite the fact that we know these are serious, life-threatening illnesses, insurance companies are known to routinely deny life-saving treatment.
Why is that?
Well, it has a lot to do with the ways that insurance companies regard mental health. Eating disorders occupy an odd place in the spectrum of mental health diagnoses, since they impact all major organ systems in the body over time. What’s often approached as a mental health problem begins to have very serious ramifications for your physical health!
A combination of social stigma and a lack of strong, representative research (due to a lack of funding) complicate matters further, but most importantly: in most situations, insurance companies exploit loopholes in state and federal laws which govern how they’re supposed to provide benefits to policy holders.
Because eating disorders are so misunderstood and treatment can be expensive, insurance companies find every reason imaginable to deny coverage even when medically necessary. Sometimes this is in violation of their contracts with policy holders, or even state and federal law. Lawyer Lisa Kantor has become an expert at going after insurance companies for due benefits, and won a landmark case in California earlier this year. From the article:
“Health plans should give all the reasons for a denial of benefits at once, rather than waiting years to inform policyholders of new reasons for the initial denial,” said Harlick’s lawyer Lisa Kantor. “Blue Shield never questioned the medical necessity of Harlick’s treatment at the outset, but argued it had the right to do so after it became aware California law invalidated its policy language denying treatment. Under that theory, policyholders would be forced to wait years for recovery as insurers work through their list of reasons to deny coverage.”
Unfortunately, it only establishes precedent in California, even though these kinds of denials are happening all over the country.
So what can we do?
One of the most important ways to make change for the better is through legislative reform. That’s why I’ve been volunteering with the Eating Disorders Coalition since 2007. The EDC is a federal advocacy organization working to advance eating disorders as a public health priority, and they have been building relationships on Capitol Hill in Washington, DC for over ten years. They worked closely with former Congressman Patrick Kennedy to help pass the Mental Health Parity and Addiction Equity Act of 2008 (MHPAEA), which was intended to help close the loopholes by which insurance companies often deny coverage.
Unfortunately, the final version of the bill didn’t define mental health. Weird, right? What this means is that insurance companies can still pick and choose what diagnoses they cover and it’s completely legal, even under policies which cover mental health. Can you imagine if you had health insurance, but they specifically said they don’t provide any coverage for cancer, or diabetes?
Through the EDC I’ve already met many families who have lost loved ones to eating disorders due to mismanagement or outright denial of treatment. Others have had years lost to short-term inpatient stays where they become stabilized in a facility, but can’t stay long enough to ensure they are healthy enough to go home, creating a cycle of stabilization and relapse.
The thing is, eating disorders are often preventable and effective treatment exists! The American Psychological Association has even published a 100+ page guide to treatment, but again, insurance companies have no obligation to use these standards when considering treatment.
That’s why the EDC has worked hard to write an eating-disorder-specific bill: The FREED Act, or The Federal Response to the Elimination of Eating Disorders. Doesn’t that have a nice ring to it?
The FREED Act will secure funding for research, help educate both the public and medical community about eating disorders, and lower the cost of treatment over time. Through all three initiatives, we will better know the prevalence of eating disorders, more easily identify them, and help get treatment for those who are currently suffering from them.
And that’s where you come in. Getting the bill introduced in Congress is the very important first step, but now we need people to come and share their stories with members of Congress and their staff to advocate for their support. Doing advocacy work with the EDC is an opportunity to make a difference for millions of people and transform the way our culture regards eating disorders.
The EDC holds a Lobby Day twice a year – in the Spring and in the Fall. The next one is September 17-18, 2013, but even if you can’t make it there are other ways you can help. Writing letters or just calling the offices of your Representatives can go a long way!
(Edited by Clare: Would y’all be interested in me putting a form directly on this blog where you could easily submit a letter? You could just write your note, click send, and it would automatically go to the EDC’s email so they can collect and deliver them. Let me know!)
As a Junior Board member of the EDC, I’m also hoping to build a strong network of eating disorder advocates in Virginia. We need more Virginians to go to DC, but I’d also love to see events throughout the year to reach out to communities to start talking about eating disorders in serious ways. Interested? Then we should talk! Clare and I are already working to make it a reality!
For more on the Eating Disorders Coalition and to register for Lobby Day, check out http://www.eatingdisorderscoalition.org.
I’ve also got a page up on my blog with some more details on what exactly you can expect in DC which you can see here: https://arenomore.wordpress.com/advocacy/
You can also email me at EDsNoMore@gmail.com for more info, or to be added to our mailing list for future advocacy and community events in Virginia.
Thanks, and I hope you’ll consider joining me on Capitol Hill!
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