This week is National Eating Disorder Week, and it’s a good time to remember the staggering statistics. Almost 30 million people in the United States suffer from an eating disorder, and eating disorders have higher mortality rates than any other mental illness.
Recognizing the critical need to increase access to care, federal law attempted to address the issue in 2010 with the Wellstone-Domenici Mental Health Parity Act. The legislation requires employers with 50 or more employees to include coverage for treating eating disorders if the business’s health insurance coverage already includes mental illnesses.
This is a good step, but unfortunately the law leaves it up to each state and insurer to provide and oversee treatment coverage. And Texas lags behind.
When a state lags behind, it opens the door for insurance companies to either exclude the coverage of eating disorders entirely or grant minimal day-by-day coverage.
When there is coverage, it is often yanked away as soon as the patient reaches an arbitrary weight rather than sticking with the patient to ensure longer-term care and recovery.
In some instances, insurance companies will deny coverage on the basis of cost. They seem to not realize that an untreated eating disorder can draw out substantial financial resources under mandated medical benefits if not initially and more cost-effectively covered on the mental health side of things.
Being turned away from care leaves sufferers forced with the choice to pay for the treatment out of pocket, sometimes costing thousands of dollars.
Such was the decision that my family and I faced when I endured a severe eating disorder at the age of 14.
After losing 50 pounds, collapsing and being rushed to the hospital, it finally became clear: I needed help and treatment. But the process of seeking treatment was frustrating and confusing. Often, insurance companies will measure “wellness” by body mass index rather than on the mental components of the illness or dangerous actions of the patient.
Despite my rapid and significant weight loss, I was not below a weight criterion that would allow me full treatment coverage, so with almost no insurance support, my parents bore the full financial and emotional hardship of helping me find care. My family surrendered every penny — all they had plus retirement savings — so I could get the help and treatment I needed.
I was lucky. I managed to make a full recovery after several weeks at a treatment facility and long-term follow-up care, but it was not without extreme sacrifice and hardship on my family, and a shame- and guilt-filled process of recovery that still causes me pain and remorse.
Barriers to care such as meaningless weight requirements need to be removed. States, especially Texas, need to do a better job at serving as a “watch dog” over insurance companies when it comes to care, and public education must include that an illness that takes a lifetime to develop cannot be treated in a few short days or weeks.
Last year, Missouri became the first state to expand insurance coverage for eating disorders. Missouri law now explicitly outlines the eating disorders that can be covered, includes coverage of mental health treatment where mental illness is often co-occurring and ensures that weight is no longer the sole determinant for whether someone receives treatment.
Texas should follow suit. Access to treatment for Texans suffering from eating disorders would greatly improve, and so would their health. Most importantly, experts and clinicians should dictate care rather than insurance companies.
Not everyone, including me, fits into a rigid criteria defined by only the most superficial aspect of the disease — weight. These criteria and strict confusing rules are detrimental and in opposition to both federal law and the process of getting well.
Sufferers and their loved ones should not be faced with the impossible decision of financial ruin or impending death, especially when treatment is available and effective for those who receive a time-appropriate and comprehensive course of care.
Jacqueline Patmore is an implementation specialist at the Texas Institute for Excellence in Mental Health at The University of Texas at Austin.
A version of this op-ed appeared in the Austin American Statesman.
To view more op-eds from Texas Perspectives, click here.
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