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’s Story
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.
Lucky for you, if you are covered by a health insurance contract (individual or group) issued in the state of VA. Statute: § 38.2-3411. Coverage of newborn children required. See excerpt below. Ectodermal dysplasia expressly covered. If you are covered under s self-funded employer sponsored plan, VA law does not apply. Read Policy for benefits. (Susan Barbey–NJ)
“B. Coverage for newly born children shall be identical to coverage provided to the insured or subscriber except that, regardless of whether such coverage would otherwise be provided under the terms and conditions of the insurance policy, subscription contract, or health care plan, coverage shall be provided for:
1. Necessary care and treatment of medically diagnosed congenital defects and birth abnormalities, with coverage limits no more restrictive than for any injury or sickness covered under the insurance policy, subscription contract, or health care plan; and
2. Inpatient and outpatient dental, oral surgical, and orthodontic services that are medically necessary for the treatment of medically diagnosed cleft lip, cleft palate or ectodermal dysplasia. Such coverage shall be subject to any deductible, cost-sharing, and policy, contract, or health care plan maximum provisions, provided they are no more restrictive for such services than for any injury or sickness covered under the insurance policy, subscription contract, or health care plan.”
Susan, you are correct. However, that state law does not apply to ERISA-governed health insurance plans (e.g., self-funded/self-insured employer-sponsored health plans), which accounts for upwards of 60% of health care plans nationwide according to the Employee Benefits Research Institute, nor does it apply to federal insurance plans (e.g., Federal Employee Health Benefits plans), which we have.
Our family is also excluded from coverage due to having a Federal insurance plan. The Federal government is one of the biggest employers in Virginia, so more Virginia residents are excluded from the current policy than are included. That, coupled with the extremely high cost of living that eats up a larger percentage of our paychecks here than in many other parts of the country, makes trying to care for our two kids with ED’s needs very financially challenging. Federal law mandating that ALL insurers cover this is crucial.
We agree. We hope that you will advocate for ELSA by contacting your legislators. Use this easy tool here: https://nfed.org/get-involved/advocate/ways-to-advocate/#/
Really great blog! I’m in Australia and in my 20’s looking at upwards of $40,000 to have a normal, functioning smile. Insurance only covers $1800 worth of major dental per year – so wonderful that you are raising awareness and fighting for your son 🙂
Hi. I am an advocate for transportation to medical services, including all necessary dental services for kids in the Medicaid program. The bill I have been working on for ten years, The Protecting Patients Transportation to Care Act, will be the subject of the second panel before Energy and Commerce Committee tomorrow, on which you are the witness on H.R. 1379.
I would really appreciate it if you would put in a kind word for our bill. Poor kids need dental coverage for any condition AND a way to access the appointment. I will say hi tomorrow at the hearing since I will be in the audience. Thank you! Marsha
Hi, Marsha. Thanks for reaching out! We shared your comment with Becky Abbott from our staff and she said she was able to connect with you at the hearing. Here’s hoping both of our bills get passed! ~ Jodi, NFED, Director, Marketing and Communications