If you’ve ever sought treatment for an eating disorder, then it is likely that you’ve also struggled with insurance coverage.
Treatment centers nationwide are filled with tales of patients having their inpatient stays cut short because their insurance deemed them “medically stable,” of families who refinanced their entire lives to treat their loved ones, of women and men who bounce in and out of hospitals because they can never stay long enough to make real progress.
There are many reasons for this predicament. First, there is the situation at the top: insurance companies are businesses. We may want to believe that they are “on our side” when it comes to our health and wellbeing, but at the end of the day, they’re in it to make money. Of course, this is somewhat understandable—a business that doesn’t manage its finances smartly won’t last long. Yet it begs the question: What is the human cost of these business strategies?
Second is the situation at the bottom: lack of patient education. Insurance companies bank on the fact that most people will give up after being denied treatment. Those who do appeal the denials—once, twice, even three times—also eventually give up, simply because the fight is time-consuming and deeply discouraging. As a result, insurance companies only end up paying for the small subset of people who fight back and don’t stop until they get a result.
(Mind you, none of the above is the patient’s fault. We aren’t born understanding the complexities of the insurance and healthcare system. Often, we are thrown into the system and have to learn the ins and outs along the way—all while devoting our energy to also staying alive.)
Like many eating disorder patients, I’ve had my fair share of insurance woes. By the third time I was cut prematurely from treatment, though, I learned something invaluable: You can fight against your insurance company—and win.
Here are five things I've learned that you absolutely need to know when it comes to insurance if you have an eating disorder (or any mental illness). (Shout out to Kathleen MacDonald of the Eating Disorders Coalition for her input!)
1. Keep a copy of your complete insurance policy. Don’t wait until you run into a problem with your insurance company to learn about your plan or policy. Get it ASAP.
2. You are entitled to the treatment your doctors recommend at the level of care they deem necessary to treat your eating disorder. You do not need to “fail first” at lower levels of care unless your insurance company treats all illnesses (mental and physical alike) that way. (Note: This is only true for plans that are bound by law to follow mental health parity, which, unfortunately, is not always the case.)
3. You have the right to appeal (make a formal request regarding) your insurance company’s decision if you are denied treatment. You can go through the company’s appeal process or seek an external review of your case from an independent organization. Don’t despair if your insurance company doesn’t reverse its decision after multiple appeals—many people get a better outcome in the external review process (I did!).
4. Many insurance companies deny patients because (according to the insurance plan) they no longer meet the “medical necessity” criteria for a particular treatment (for example, demonstrating certain symptoms, being at a certain weight, etc.). Educate yourself about your plan’s specific medical necessity criteria AND what the American Psychiatric Association says is the proper treatment of your illness (insurance plans are supposed to follow APA guidelines). Then, talk with your treatment team about how you meet those criteria so that you know how to argue your case.
5. The insurance representatives you speak with may not know the details of your case or, at worst, may even try to mislead you. Be clear on what you need covered, exactly how you meet medical necessity, and why you are motivated to cooperate fully with your clinicians. If you are concerned about the representative’s truthfulness or knowledge of your case, ask for a supervisor. If you hit a dead end with the next person, keep going! Don’t stop until someone listens to you. And, as eating disorder lawyer-advocate Lisa Kantor (who offers free consultations to eating disorder patients) recommends, “Document EVERYTHING! Every time you speak to someone at your insurance company, write down their name, the time and date, the length of the call, the details discussed, etc.”
All of this can get very confusing. The most important thing to remember is this: DON’T GIVE UP! Insurance companies bet on you accepting their decisions without question. But you know yourself and what you need better than anyone! Call and then keep calling until you get what you need.
I do have one caution, though. If there is a trusted individual who can advocate on your behalf—whether a parent, guardian, treatment professional, or lawyer—I strongly recommend that you let them. Your job is to focus on recovery, not to battle your insurance company. Fighting insurance can mean reading uncomfortable details about your case history, or having to build an argument as to why you are sick enough to need treatment. Neither is conducive to recovery.
But if you do have to advocate for yourself, then take heart. It is possible to fight your insurance company. And win.
For additional resources about insurance issues, check out these websites:
Joanna Kay is a New York City writer in recovery from anorexia nervosa. She has written for the National Eating Disorders Association (NEDA), HealthyPlace.com, and other mental health sites.
A version of this piece originally appeared on Proud2Bme.org, NEDA's website for teens and young adults.