Many years ago, before my son Aidan was diagnosed with ectodermal dysplasia, we were referred to the dental clinic at Children’s Hospital of Wisconsin. During our first visit, Aidan was assigned as a new patient to a new dental resident. She was extremely knowledgeable and took great interest in Aidan’s complex dental issues and his missing teeth.
After not knowing for many years why Aidan was missing teeth and was sick with high fevers, we finally heard the two words that brought us some relief, ectodermal dysplasia.
To be honest, I had never heard of ectodermal dysplasias. However, I had known that this was a congenital anomaly that was passed through my family, as my grandfather and brother exhibited some of the same symptoms. From that initial appointment, we were then referred to a genetic counselor and geneticist to confirm the diagnosis of ectodermal dysplasias.
Each specialist explained the complex dental work that Aidan would need throughout his lifetime. They put our minds at ease assuring us these medically necessary treatments would be covered under medical insurance, because they would repair his congenital anomaly.
We quickly found out that wasn’t the case. Our family would have to fight for coverage of most treatments and services that Aidan needed.
Our First Fight
Our first fight came with his initial set of prosthetic teeth. We learned how to navigate the frustrating denial and appeals process. Finally, a third party medical review board analyzed Aidan’s case and determined that his first prosthesis should be covered.
We were thrilled that they had reversed their decision and decided to provide coverage. They again assured us that notes had been made to help us with future prior approvals. Since that initial victory, we still have to fight for coverage of his treatments and have only been successful with a handful of small claims.
Policies and State Statutes Not Enough
The constant phone calls, emails, meetings, and paperwork drained our energy, to say the least. We knew that this was wrong and decided to start looking at our policy and state statutes. To our surprise, our policy included coverage for the repair of congenital anomalies. And, a Wisconsin state statute also provided the same coverage that applies to the repair of any body part due to a congenital anomaly.
Our initial reaction was that my husband’s employer must have overlooked this information and didn’t know about the state statute. We brought this information to their attention and they still denied the pre-authorizations. My husband’s employer informed us that they did not have to follow state statutes as they provided a self-funded plan to their employees.
We decided to do our own research and found out that self-funded plans are federally regulated. Therefore, they did not have to adhere to certain state statutes. After realizing that no matter how much information we provided to our insurance company or employer, they would never change their decision, we started reaching out to our state legislators.
These legislators either didn’t want to help us or understood very little about how self-funded plans were governed. No one in our state legislation could help us. At this point, we realized the only people who would be able to help us would be our federal legislators.
Heading to D.C.
Federal legislation was needed to help close the loophole that allows medical insurance to deny these benefits. This is the moment when we decided to reach out to our federal legislators and travel to Washington, D.C. My son would share his story about our struggles to ensure medical insurance would pay for his missing teeth.
Little did we know when we traveled to Washington D.C. in the middle of winter, that we would find a legislator that would become our ally in this fight, Senator Tammy Baldwin from Wisconsin. After listening to Aidan’s story and receiving letters from other families with ectodermal dysplasias experiencing the same insurance struggles, Senator Baldwin, along with Senator Joni Ernst of Iowa, introduced the bipartisan Ensuring Lasting Smiles Act (ELSA) in August of 2018 and then again in February of 2019.
ELSA to the Rescue
ELSA is the first step to ensure that insurance companies cover the repair of congenital anomalies. Not only will it help our families that struggle with insurance coverage for missing and misshapen teeth, it will also help individuals born with other congenital anomalies.
We are blessed that we have many legislators who support ELSA. We must not take this legislation or our legislators who co-sponsor ELSA for granted. It is up to our families to share our individual stories, educate our legislators and advocate for change.
In my opinion, it’s absurd that insurance companies would even consider denying someone their teeth.
It’s ridiculous that our families have to struggle and fight insurance repeatedly so we can have teeth.
Our Chance is NOW
It’s 2019 and this is our chance to put an end to our never ending battle with insurance. Let’s stand up and let our legislators know that we have had enough. Tell them we will keep fighting until we get medical insurance coverage for the repair of all congenital anomalies. We are determined and passionate advocates and we can do this together!
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Thank you Aidan Abbott and your entire family for advocating for ELSA!!! My daughter, Erica Green, has ED and we didn’t know what it was until she was 24.
Good work advocating!!!