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Stop Insurance from Playing Games with Eating Disorder Care


We have until OCTOBER 2, 2023 to improve insurance coverage for eating disorders through this route. PLEASE prioritize reading and acting on this message.

(Anyone not in the U.S.: If you’re in a group that has U.S. members or U.S. followers on social media, please consider spreading the word by sharing this email.)

Here’s the scoop:

It’s illegal for insurance to use different standards for eating disorder treatment than they use for medical treatment. It’s also illegal for them to use the same standards they use for medical treatment. So they’ve made up their own standards and deny everything.

Government insurance regulators are aware of this. They’ve drafted instructions telling insurance what to change, but their instructions still leave a lot of loopholes because they don’t really know eating disorders. YOU DO.

Whether you’re an eating disorder treatment provider, an individual experiencing an eating disorder, a family member, friend or advocate, or a member of an eating disorder organization, YOU CAN MAKE A DIFFERENCE.

Because for once in a lifetime, THEY’RE ASKING FOR OUR HELP.

Our mission is simple: Tell them how bad insurance is so they know exactly what needs to change.


Write about your own experiences with insurance coverage for your eating disorder.

Submit it at this link: BEFORE midnight October 2nd.


They count how many individual letters they get on each topic, so as long you mention eating disorders, you could literally write one line. You can even submit anonymously. Just note that all submissions become public, so don’t include anything private or confidential.

(Note that you are limited in the form to 5000 characters including spaces, so the smart money is on typing into an email or word doc and then attaching it with a little note to “see attachment.” That way you also won’t lose your work in an internet glitch.)


Option 1: The bare minimum. Form letters don’t count but everything else does. Go to the link, anonymously type one line that includes the words “eating disorders” and click submit.

I’m not exaggerating. If you’re pressed for time, overwhelmed with life, or don’t want to relive a hellish experience but want to submit something, use your version of one of these:

  • “My spouse had an eating disorder and insurance screwed my family by refusing to pay for treatment. Please fix this broken system.”
  • “I’m writing you from my second job because insurance won’t pay for my child’s eating disorder program. GTG.”
  • “I’m an eating disorder professional considering quitting my job because I can’t deal with insurance one more minute.”

You could also write something nice:

  • “My child had an eating disorder and without insurance coverage for treatment, they would have died. Please make sure everyone has access to life-saving care.”
  • “My dietitian saved my life but they refuse to take insurance any more because of what I went through. Everyone deserves to get good care even if they can’t pay out of pocket. Otherwise why are we paying those premiums every month?”

Okay, that second one isn’t that nice. It’s hard to think of something nice when you are writing about insurance and eating disorders. My point is that you still get credit for something short and to the point. And you can do it from your bed. Click on the link, submit, and you have my permission to stop reading this email and move on. (Or go to the list of free continuing ed at the bottom.)

Option 2: Expand on your personal experience.

If you’re a professional, write a bit about yourself, your practice, your career, your experience, your credentials, work or volunteer positions you’ve held, anything you’ve written, anything that demonstrates your credibility. Then launch into the problems you’ve had or seen with insurance. They say numbers are helpful – estimate hours on the phone per week, number of sessions or patients insurance issues affect, number of people you have to turn away, number of people who get pre-approval and then later get denied… Anything that gives the feel of how REAL and how COMMON this problem is for real people and their lives. You can use letter form or just bullet points. You can add quotes from anonymous patients or attach redacted emails, BUT YOU DON’T HAVE TO. Do as much or as little as makes sense for you, just please send something. Try not to stress, just let your well-deserved anger flow through your fingertips. You can attach any docs that demonstrate what you’re talking about.

If you have the lived experience of an eating disorder personally, as a support person, or anything else, let it rip… no need to be polite or professional. Share as much as you are able to while still staying safe. Share the depths of insurance hell and what you had to do to get your child what they needed. Share what you wrote in your journal when insurance tried to get you discharged early or describe your eating disorder behaviors that insurance said didn’t “qualify” for coverage. ***If you are currently in recovery or if this is too vulnerable a place to go in your mind, PLEASE PLEASE don’t do this part. Go back to Option 1 and call it a day. That is a win both for this assignment and for not letting insurance hurt you again.***

Option 3: Add your ideas.

What solutions have you thought of? When insurance was jacking you or your patients around, what did you wish would happen instead? Remember these government regulators want to help, but they have never been in the situation themselves. Your predicaments and how you solved them – or wished they could have been solved – will give them ideas to help the next person.

Option 4: Get technical.

If you want to write a letter from your organization, or you want to see what is already written about eating disorders in the government’s corrections, or you want to get ideas of specific solutions that you can suggest, read the letter from IFEDD posted here: DO NOT PANIC. YOUR LETTER DOES NOT HAVE TO BE THIS LONG OR DETAILED. You’re just using it to get ideas. Copy anything you want.

One more thing, and please do this even if you don’t want to submit your own comment.

Copy and paste the following image and message (or your own message, I just prepared this to save time) on your social media, in all your online groups, and in an email to everyone you know who cares about eating disorders The link goes to the IFEDD website where there is a (much briefer) explanation about submitting a comment as an individual experiencing an eating disorder, a family member, or eating disorder professional who is not a dietitian. I’ve added the image as an attachment, too. Just be sure to include the link in the text somewhere.

Did insurance play games with your eating disorder treatment? Share your terrible experiences to help change the law. Okay to submit anonymously. More information at

Need ideas?

Read the letter at this link: DO NOT PANIC. YOU DO NOT HAVE TO WRITE A LETTER THIS LONG OR THIS TECHNICAL. You are reading this letter ONLY for background and to get ideas.

THANK YOU for whatever you attempt. I am hopeful it will make a difference.


P.S. – The first week of October has a buffet of selections for free eating disorder-related continuing education. See below and of course let me know if you have any to share.

Reminder: Eating Disorders Boot Camp is available for instant download any time. Recent comment from a colleague: “I’ve used the things you taught with all my patients, not just the ones with eating disorders.” In need of more specific help? Losing sleep or ready to quit? I’m available most workdays by zoom or phone. Specialties are CEDS supervision and super-stressful, challenging situations. Day one RDNs to Supervisors. Click here for rates or email me at [email protected] and let’s schedule ASAP.

Free CEU opportunities and as always, please let me know if you have one to share.

Alaska Eating Disorder Alliance 4 session ECHO series –

Ethics and Boundaries: The Messiness, Difficulty and Dilemmas 9/26

When the Solution Becomes the Problem: Avoidance in Trauma and Eating Disorders 9/22

Trauma and Self-harm 10/2-3

Strategies for using trauma informed care when discussing weight in clinical practice 10/4

Hiding in Plain Sight: Eating Disorders in Cis Males 10/5

ConnectED virtual Learning Day: An opportunity to learn from eating disorder thought leaders from across the nation 10/6

Nutritional Healing Approaches for Substance Use, Trauma, Mental Health, and Eating Disorders 10/6

Underrepresented: Wisdom and Discussion with BIPOC ED Professionals 10/6

Posted in Jessica Setnick

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