By Kevin Koser
My name is Kevin Koser, and I am the National Foundation for Ectodermal Dysplasias Advocacy State Lead for Virginia! I live in Crozet, Virginia – just a short drive west of Charlottesville—with my beautiful wife, Rachel, and 3-year-old son, Kannon, who has hypohidrotic ectodermal dysplasia (HED).
Crozet is an amazing town at the foothills of the Blue Ridge Mountains with many outdoor activities, like hiking and biking trails, peach and apple orchards, and a plethora of family-friendly craft breweries, cideries, distilleries, and vineyards. As a University of Virginia (UVA) alum (Go Wahoos!) who met his future wife at UVA in 2007, Crozet was the perfect small-town to start a family. So, when I received a job offer in Charlottesville in 2014, we jumped at the opportunity.
Kannon was initially diagnosed with HED by his pediatric dermatologist at UVA, and the diagnosis was confirmed by genetic testing shortly after his first birthday in 2016. On September 2, we celebrated Kannon’s third birthday, and on September 4, Kannon attended his first day of preschool. But he still has no teeth.
Why I’m Taking Action
I accepted this volunteer role as Virginia’s Advocacy Lead because people impacted by ectodermal dysplasias, like our son Kannon, deserve better treatment from health insurance companies, and because I know this issue transcends political ideologies. After attending our first NFED Family Conference in 2017 in Washington, D.C., and listening to the struggles experienced by so many families, I knew I had the voice and drive to bring this issue directly to our elected officials.
“Who could ever argue that children don’t need teeth? Why would a congenital anomaly affecting the teeth somehow be excluded from insurance coverage when almost any other congenital anomaly is covered?
The narrative just doesn’t make sense. It’s certainly not a “cosmetic” issue, as insurance companies claim, because everyone I’ve met with ectodermal dysplasia is already beautiful or handsome! Our little guy, Kannon, is the sweetest, most loving child, with the most adorable smile. But I knew something had to be done because the lack of teeth can have such a long-lasting health impact. So calling this a “cosmetic” issue really insulted me.
What Do We Tell Kannon?
Soon, Rachel and I will likely be asked: “Mommy, Daddy, why don’t I have teeth? Why can’t I eat like you do or my friends do?” We’ll tell him that all people were made perfectly by God, and that everyone is different. We’ll embrace the question and make sure Kannon understands his genetic condition.
“But, as he gets older, we shouldn’t have to explain that he can’t have teeth because health insurance companies don’t feel teeth are necessary. That response doesn’t make sense to us, and it sure won’t make sense to a child who is already dealing with so much.
The Ensuring Lasting Smiles Act (ELSA) would directly address this issue and ensure that we don’t have to tell children like Kannon that their health condition isn’t valued by insurance companies. ELSA would be life-changing for so many families affected by ectodermal dysplasias!
Will You Speak Up?
Every voice matters. All 100 U.S. Senators and 435 U.S. Representatives need to hear our voices! I hope you join me in advocating for this change!
Kevin Koser is a guest blogger for the National Foundation for Ectodermal Dysplasias.
Editor’s Note – If you would like to volunteer for the NFED, take your first step here. We are still looking for volunteers to be Advocacy State Leads. Check here to see if your state is listed. If you are ready to take action, you can advocate for ELSA now using our easy advocacy tool.