Taking Ectodermal Dysplasias to the Hill

July 12, 2016June 6, 2017 Category: Advocacy Posted by Kelley Atchison

By Becky Abbott

As a member of the ectodermal dysplasia community, it has been frustrating, to say the

least, having to deal with insurance, human resource administration, and politicians. We have submitted claims to insurance, had them denied, submitted again, denied again and been through the vicious circle so many times that we didn’t know where to turn next.

We have written letters to legislators and made calls, hoping someone would listen to our pleas and help our family, to no avail. Many families in the ectodermal dysplasia community have been through the same situation and find themselves paying insurmountable dental bills due to insurance companies denying claims.

My family has been raising awareness for ectodermal dysplasia, and advocating for many years for my son Aidan, who has X-linked hypohidrotic ectodermal dysplasia (XLHED). This past February, we took the opportunity to join hundreds of Rare Disease Advocates in Washington D.C. and meet with our legislators on Capitol Hill during Rare Disease week.

My husband, two boys and I decided we would drive to D.C.  It would be an adventure for our family. It was our first time in D.C. and we didn’t know what to expect. Initially, I was very apprehensive and wasn’t sure if it would be appropriate to bring my son and how the legislators and staff would respond.

Our day on the Hill started early. We met with other advocates from our state of Wisconsin, looked at our schedule, and walked to our first meeting with a Congressman. Both my son and I had been quite nervous all morning and worried that we wouldn’t know what to say.

Our first meeting washed away all our worries. We quickly realized the legislators and their staff were very welcoming and receptive to us sharing our stories and issues. The atmosphere was laid back. While Aidan shared his story, I realized that personally speaking with the legislators had more impact than I could have imagined.

Spending the day, and going to meetings with the other members of the rare disease community, helped us through the day. We were able to share the experience with others who understood what we were going through and supported us. This was absolutely one of the best experiences we have had. The legislators are more receptive and willing to listen to your message in person.

All of you will have this opportunity to speak with your legislators and staff on Capitol Hill. Next year, in 2017, the National Foundation for Ectodermal Dysplasias Family Conference will be held in Washington D.C. Families will be able to spend the day at Capitol Hill.

I’m calling on all families to attend. Let’s raise our voices together!

We need our legislators to know that dental care coverage for ectodermal dysplasia should be covered under medical insurance and these dental procedures and teeth are medically necessary.

My family looks forward to spending the day with your families and sharing our message. Stay tuned for more information. The countdown to Washington D.C. starts now!

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