This blog is the first in a series of blogs featuring different individuals affected by ectodermal dysplasias and their challenges in getting insurance to cover their medically necessary dental care. Cody Snell volunteers for the National Foundation for Ectodermal Dysplasias as a State Lead who is advocating for the Ensuring Lasting Smiles Act. In this article, he explains why he’s advocating by sharing his arduous dental journey filled with insurance denials. If you wish to help us get insurance benefits for families like Cody’s, register as an advocate.

By Cody Snell

Hello all. I’m Cody. I’m 33, a husband and father of two. I have x-linked hypohidrotic ectodermal dysplasia and my daughter is an affected carrier.

I had a total of six teeth, and all were conical. I was never able to eat the same things others enjoyed: jerky, nuts, steak, apples. I just couldn’t chew them. I was fitted for dentures several times in childhood and they didn’t help.

Not to mention the unnatural look and embarrassment of caring for them. At one point, I was fitted with dentures that were glued in to prevent the constant care of a 6-year-old using Poligrip just so he could eat. After various tries, I threw in the towel and just didn’t eat what others could.

10 Screws

As an adult, I began the process of finding a maxillofacial surgeon and dentist to install dental implants. There were none local, so I had to travel three hours for consultations and appointments.

I had orthognatic surgery taking bone grafted from my hip to align my jaw correctly. The bone that would typically hold tooth roots or implants had deteriorated from the lack of teeth and had to be built back up with my bone grafted from my hip.

A total of 10 screws were used in my jaw to align and attach the new bone. This 12-hour surgery cost $15,000 out of pocket for the surgery alone. The follow-up process took six months to heal.

Removing My Teeth?

The next step was removing my teeth. This was the most nerve-racking part. I only had six teeth to begin with and now I was going to have zero. This process was $1,800 out of pocket.

I then had dentures fitted and installed with my dentist to get by, costing $1,500. After three months of healing, the doctor installed the actual implant posts at $7,000 out of pocket. After three months, the doctor uncovered the implants.

My dentist took molds and measurements to build the actual teeth at a cost of $7,000. After 18 months and $30,000, I had a mouth full of semi-permanent teeth.

This is my broken denture. Without it, I have no teeth. Insurance will not pay to get it fixed.

Only Just Begun

Since my teeth were completed, I have spent around $500 a year in appointments and repairs. The teeth have broken, the abutment gaskets wear down and most recently, my complete upper broke into pieces. The brand of abutments the dentist chose to use on the bottom were subpar, so they don’t stay in place. Fixing these two things alone will total over $7,000 and I continually get denied by insurance.

I received a bill just for taking the broken upper out recently and it’s $400. Insurance is not going to cover any of it.

 

My daughter is also affected. She, too, faces a lifetime of dental care so she can have teeth for speaking and chewing.

My daughter is four years old and we will begin going through the same process for her. Thankfully, she has twice as many teeth as I did but the majority are also conical. She, too, will have the same eating difficulties I have had.

Cody Snell is a guest blogger for the NFED. He and his family live in New Mexico. To learn about Cody, read Cody’s Limitless Life.

Join Us for Advocacy Day on Capitol Hill

Share Your Story

Leave a Reply

Your email address will not be published. Required fields are marked *