It all started with a letter. Early fall 2019, Ruby Jo Lubarsky, a grandmother, sent a letter to her State Senator, Julie Raque Adams. Ruby Jo shared her frustration about the limited treatment options in Kentucky, how inconsistent insurance coverage is for both inpatient and outpatient services, and in general how uneducated our society is regarding eating disorders. All Ruby Jo was trying to do was find the care her granddaughter desperately needed. But her letter struck a chord.
Senator Raque Adams followed up with Ruby Jo and offered her an opportunity to present in front of Kentucky’s Interim Joint Committee for Health, Welfare and Family Services. Ruby Jo knew the significance of this opportunity and reached out to professionals and advocates in Louisville to create a group of individuals who could address all aspects of eating disorders specific to the state of Kentucky. Our group was comprised of eating disorder and public health researchers, a psychologist, a pediatrician, and an individual who had been affected by an eating disorder personally. The group decided that the formation of a council would be a good place to start and modeled our vision for Kentucky on a council adopted in the state of Missouri that has improved access to quality care in Missouri.
We knew that having a thorough presentation was important, but not enough. The facts speak for themselves—people make the issue real. We reached out to NEDA for help in spreading the word to those people in Kentucky who had expressed interest in eating disorders, we used social media, news media, NEDA Walk Committees, professional organizations, and friends and families who have been impacted by the illness. We asked for letters of support from individuals and organizations in our community and the state. We asked people to call their legislator and voice support for legislation to establish a Kentucky Eating Disorder Council (Senate Bill 82). It worked. On the day of the hearing, the personal testimony was compelling, the room was packed, the letters came pouring in and the presentation to the Interim Joint Committee was heard favorably, unanimously passed, and sent to the State Senate.
In the State Senate, the process started once again. We had to do all the things we did for the interim meeting, plus educate all the senators that were not a part of the Joint Health and Welfare Committee. We needed to show how this legislation was relevant and important to all Kentuckians. We created a one-page fact sheet for all senators. We emailed, called, and met with as many senators as possible, focusing on senate majority and minority leadership. Again, our efforts worked. The bill passed the State Senate unanimously and was sent to the Kentucky House of Representatives.
Representative Kim Moser supported the council and agreed to sponsor the bill in the House of Representatives. We repeated the process we used in the Senate and in addition we were able to hold an Advocacy Day at the Kentucky State Capitol. This all coincided with National Eating Disorder Awareness Week and provided the visibility we were seeking. NEDA was critical in helping organize the advocacy day! With the public policy team’s help we were able to meet with over 14 representatives and have resolutions adopted in both the House and Senate recognizing National Eating Disorders Awareness Week in Kentucky.
In the House of Representatives, the council bill awaited a vote for several weeks. The Covid 19 epidemic hit and we were sure that all non-essential votes would understandably take a back burner. Senate Bill 82 was ultimately included in a House consent vote and passed!
Senate Bill 82, sponsored by Senator Julie Raque Adams, for establishing a Kentucky Eating Disorder Council was signed into law by Governor Andy Beshear on March 27, 2020. This is amazing news for all Kentuckians affected by eating disorders. This is the first ever eating disorder focused legislation in Kentucky and its mission is to improve access to quality affordable care for all who need this life saving treatment.
During the process of advocating for passage of this legislation, I have learned a few lessons:A letter can make a difference.
- Your legislators do want to hear from you.
- They are not “untouchable.” In fact, I found exactly the opposite to be true.
- If you have a passion for a cause don’t be afraid to speak up. You don’t need to be an attorney, a doctor, or have experience in state government.
I learned along the way and reached out to ask for help when I was unsure of where to go. I give credit and thanks to my group members: Dr. Cheri Levinson, PhD, Dr. Nick Peiper, PhD, Dr Andrea Krause, MD, Meredith Cahill for her bravery, and Dr. Shelia Schuster for her invaluable advice and support. I also give credit and thanks to Senator Raque Adams for her sponsorship of this bill.
Melissa Cahill, of Louisville, Kentucky, is a parent with a daughter who was diagnosed with an eating disorder ten years ago. She and her husband Tim became involved with NED about seven years ago and started the annual NEDA Walk in Louisville. Their goal was to create a community of support, make people aware of resources, and help to break the stigma associated with mental illness, specifically, eating disorders. Throughout this journey they have met many outstanding people who are as passionate about more and better treatment for those who suffer from eating disorders.