EDC Advocacy Day 2021
Two years ago when I thought I was nearing the end of my second round of eating disorder treatment I received an email about the Eating Disorder Coalitions for Research, Policy, and Action's advocacy day in Washington D.C. As a new volunteer with WithAll, I was eager to get one of the scholarships that helped pay the way to D.C. so I could advocate for legislation to help those with eating disorders receive the treatment that they need. 18-year-old me ran home and asked my mother if I could go to D.C. the next month during finals week to do this, and as any concerned mother would have done, she said no. I was so upset and heartbroken at the time, but looking back on it now, I get why it wasn’t the best move for me to do.
Fast forward to April 2021, I received an email from WithAll saying that there was going to be a virtual advocacy day where we would do everything you would do on Capitol Hill, but only over zoom, so of course, I said “hell yes, sign me up.”
The Eating Disorders Coalition for Research, Policy, and Action brings in people from all across the country once a year for their National Advocacy Day to educate Members of Congress on eating disorders and ultimately push for important policy legislation to assist those who have eating disorders currently, and to help prevent more people from struggling with eating disorders in the future.
Our team was made up of some lovely individuals who all had different, yet similar experiences with eating disorders. We were all from Minnesota and Ohio, and had 7 meetings throughout the day with both Minnesota and Ohio Senators’ and Representatives’ offices.
The overarching goal of the day was to get as many Congresspeople to sign onto the Nutrition CARE Act which allows Americans on Medicare Part B to receive nutrition therapy services for their eating disorders, just as they would be able to if they had diabetes (which is covered). Currently, nutrition therapy for eating disorders is not covered by Medicare, and it is an essential part of a full and healthy recovery. Some ask why this is important for Medicare, and despite the false perception that is continually perpetuated that eating disorders only affect young women, 3-4% of seniors and 6% of females/3% of males with disabilities (the populations that make up the Medicare population) have eating disorders. Additionally, an estimated 420,000-560,000 BIPOC people on Medicare Part B are affected by an eating disorder. That’s a lot of peoples’ needs that are seemingly being ignored, yet again, by our medical system.
ED treatment does include 4 pillars of care: Therapy, Psychiatry, Medical, and MNT (nutrition therapy). Medicare and other insurance companies cover some ED treatment, but typically only 3 of the 4 pillars. Without all 4, the process sometimes doesn’t work, takes longer, or interferes with the health of the patient. If you have a square table with three of its four legs, it's not going to function the way it is supposed to. In this case, seniors and persons with disabilities are forced to either go without the vital care that they need or pay debilitating out-of-pocket expenses.
This being the first advocacy day that I may have overzealously signed up for, I was quite nervous and had no idea what to expect. The night before the big day, there was a message training meeting that essentially taught us how to boil down our experience with eating disorders into a few-minute story that we would then share with the legislative aids for our congressional members in the meetings the next day. It was at that moment that I was like “shit, I have to speak?? And about something that is a huge part of my life but that I am still learning how to talk about?”
I feel like I haven’t had anything to say to the world in a while, at least that has been my own. I haven’t posted anything on this blog in a long time, and the only writing I have been doing is for my classes. So when I realized that I needed to write out my own story with a beginning, middle, climax, and ending, I did not have a single thought as to how to do this. I very rarely pause for long enough to think about these experiences, but, I also became excited because it was something of my own. It was something that I got to share with the world, or at least with my team and a congressional aid. I truly believe that your story is the most important thing that you can own and share, because it’s yours, and no one else can take it away from you. When I was able to sit down and fully think about what I wanted to say, I realized that I wanted to share why I was there. I wanted to share the spark inside of me that was there to fight for a better experience for other people who are going through the same things that I had to.
I was diagnosed with an eating disorder at 13 years old and our insurance denied coverage for a dietician -- the care that I needed as an extremely fragile adolescent. Therapy at that time was just about getting me to eat, but eating disorders are way deeper than that and I always felt dismissed because of it. It really was like a temporary band-aid that was slapped on at a young age so I had no idea how to really live. I went 4 years without thinking about my eating disorder even though it was still there. When I decided I needed to go back to treatment and get real help this time, my insurance still did not cover a dietician. They told me that it was a “behavioral issue” and not a mental illness (as if I chose for this to happen to me).
There was some loophole that I got a couple of sessions at a reduced rate which helped me see my dietician for a little bit. She helped me more than I ever thought was possible. She pushed me past the excuses of “I don’t know,” “I didn’t have any food near me,” etc., and helped me come up with plans. While eating disorders are different for everyone, for a lot of people it’s about control. And Jenna helped me feel like I was in control in a healthy way. She is the reason I was able to go to college and not spiral out. She is one of the reasons I can sit here today and say that I am in recovery, and without her, I really don’t know if that would be the same.
I’m going to be 21 in a few months and I am just now dealing with the lasting trauma that this has brought me. I was told time after time by insurance companies that what I was experiencing was my choice and that it wasn’t severe enough for them to care. I wasn’t worth their time or their money and I could (quote) “fix it myself.” It turns out that being told that as a 13-year-old means that you are afraid to ask for help as an adult and you don’t know how to a lot of the time. My relationships in my life still suffer from this fear that my struggles aren’t important enough and that my health isn’t something that is of concern for others.
I was there on zoom because I got my teenage years stolen from me from a mental illness because I couldn’t afford the care that I needed. I was struggling with an eating disorder for 7 years because of it. Being healthy shouldn’t just be limited to the rich and those without a disability or marginalized identity. It’s time that we recognize the importance of everyone's health before these illnesses kill more people, because that’s exactly what they do.
Sharing my story and hearing my wonderful teammates share theirs was overwhelming in the best way possible. To be surrounded by people who instantly understand this huge part of you and who are also working to improve this broken system is a special feeling I will take with me forever.
Advocacy Day was the coolest and most humbling experience I have had in a while and I cannot wait to advocate at future advocacy days. I hope to never stop trying to make lasting and important changes in the hopes that no more people have to experience these horrible illnesses.
If you want to help further, please contact your local Congressional representatives and encourage them to support the Nutrition CARE Act.
Much love always,