By Melissa & Bear Pierce
When I first learned about National Foundation for Ectodermal Dysplasias Advocacy Day on Capitol Hill in June of 2020, I knew my family had to participate. Engaging the offices of my senators and representatives has been a part of my career.
I have often called for the support of a bill or expressing the urgency of an issue. It has been my passion to effect change for the people of North Carolina and the entire United States. I was eager to call for the support of the Ensuring Lasting Smiles Act (ELSA).
This time, though, was different. I had never championed a cause that impacted my own family. Suddenly, speaking with our representatives and senators about ELSA made me anxious, filled with nervousness and an urgent desire to effectively convey the impact this act would have on so many families.
Our Reason for Advocating
I thought back to the day the words hypohidrotic ectodermal dysplasia were first introduced to us. We took our son, Keller, to his first dentist appointment around his second birthday. Though he had few teeth, we weren’t concerned.
We knew children developed at different rates. As Dr. Olson examined Keller and noted his existing and missing teeth, he started asking questions about his hair, sweat and family history.
Finally, he shared what we confirmed through genetic testing. Keller has autosomal dominant hypohidrotic ectodermal dysplasia (ADHED).
Disheartening Discovery
Like most families when they first learn of the diagnosis, we launched into research and learned what to expect for his future. We immediately checked with our insurance company to explore coverage options for his missing teeth, since we knew teeth are critical to nutrition, speech development, and even confidence.
We were shocked and disheartened when we learned that often the unique dental care needed isn’t covered by most insurance companies because it’s a genetic abnormality. If any of our other children had an accident, chances are the reconstruction treatment needed would be covered. But not for ADHED or the many other congenital abnormalities.
Speaking Up for Us, For Others
When it was time for our call with the senator’s office, we knew we weren’t just advocating for Keller. We were advocating for everyone with a congenital abnormality who needs dental treatment. We were encouraged by the existing bipartisan support already and we committed to amplifying the voices of every family that has been impacted financially and emotionally by the need for this act to be put in place.
I didn’t expect to be overcome with emotion when I started sharing our journey with the senator’s office. I would have never thought that our son’s access to the unique comprehensive dental care needed would be determined by people who probably had never heard of these genetic disorders before.
But, along with other families, we shared and expressed the need from our heart. It was an incredible moment.
Re-Engage Today
As we move forward beyond Advocacy Day, it’s important for us all to remember that it doesn’t have to be Advocacy Day to raise your voice. Senators and representatives want to advocate for their constituents, and it’s up to us to let them know what is needed most.
We need to share the impact that the Ensuring Lasting Smiles Act will have on our families. We are not limited to just one chance to tell our stories. We can continue to re-engage to remind our representatives of the importance and urgency of this need.
Our hope is today you will reach out to one of your senators or representatives to either thank them for their support or encourage their support of the Ensuring Lasting Smiles Act.
Melissa Pierce is a guest blogger for the NFED. She and Bear are the parents of four-year-old, Barron Keller Pierce. They live in North Carolina.