March 8, 2017 – Allenton, WI -Aiden Abbott is 12 years old and in sixth grade at Slinger Middle School. Abbott suffers from a rare disease and recently went to the State Capitol in Madison to talk to lawmakers about dental care and health insurance coverage.
Abbott penned this story for http://www.washingtoncountyinsider.com
On Monday, Feb. 27 my family and I went to the Capitol in Madison, Wisconsin to attend Rare Disease Day 2017.
We were there to advocate for the Ectodermal Dysplasia community and families with other rare diseases. Many families from the rare disease community, representatives and their aids came along too.
I was lucky enough to get a tour of the State Capitol from an aide serving in Senator Duey Stroebel’s office. He let us sit in the chairs on the senate floor and go up to the podium. We also went to Rep. Bob Gannon’s office and my family shared my story with his staff.
I spoke to a group of legislators, families who have rare diseases, and medical professionals about the difficulties of living with a rare disease, and the troubles getting my dad’s health insurance to pay for my teeth. Another kid, Nic Volker, also read his story about his rare disease journey. I was happy I could spend the day with him and my younger brother and see all the different parts of the Capitol.
We also spent a lot of time talking with Senator Tammy Baldwin’s aide… describing my health problems related to my rare disease and how frustrating it has been trying to get my teeth repaired because my dad’s health insurance refuses to cover my dental treatments and teeth related to my rare disease. Me and my family suggested a federal law should be created mandating health coverage to include dental coverage for all health insurance plans when it is a result of a congenital anomaly.
It was a great day and nice to see all the people who came out to learn about rare diseases and support families. I am hoping that sharing my story will help all families that struggle with insurance coverage and that will change soon. Rare Disease Day 2017 was an adventure and fun and meaningful time I will never forget.