ELSA Advocates Raise Their Voices in DC at NFED Hill Day

October 5, 2023October 5, 2023 Category: Advocacy Posted by Mary Fete

The air felt electric on September 19^th. I was watching 172 advocates marching to the steps of the United States Capitol Building in Washington D.C. It was a beautiful, sunny day with blue skies. As a unified group, we stood shoulder to shoulder for a group photo, determined and ready to advocate for the Ensuring Lasting Smiles Act (ELSA). It was our first in-person Advocacy Day on Capitol Hill since before the pandemic. And, it was simply amazing!

Our virtual events the last few years were incredibly successfully. But, there is something special about walking in the tunnels and hallways of the Capitol and seeing our advocates in their ELSA shirts, making their way to 153 meetings with legislators. It was humbling to hear the brave families tell their story over and over again.

My heart is filled with gratitude for this extraordinary NFED Hill Day. I am energized and optimistic that we will be successful!

ELSA Reintroduction

We have been working on ELSA for a while – since 2017. We keep at it. I am grateful to our bill leads, sponsors, advocates, Family Advocacy Committee, NFED staff and our Board of Directors who continue to approve the resources to make this happen.

This graphic explains the purpose of the Ensuring Lasting Smiles Act and how it will ensure that private, group and individual health plans do not deny medically necessary treatment of congenital anomalies.

The 118^th Congress began last January which means ELSA must be reintroduced in this term. We anticipate that happening later this year. Our advocacy team has been working closely with the ELSA bill leads to make sure that the most appropriate version of the bill is introduced.

Kevin Koser, co-chair of the Family Advocacy Committee, was right when he said we have experienced first-hand the difficulties of getting a federal bill passed and signed into law.

Advocates are sitting around a conference table sharing their stories with a staffer from a senator's office. — *Kevin Koser (far right) explains the need for ELSA with a staffer from Senator Roger Marshall’s office.*

“That’s made it even more difficult with a divided Congress this session,” Koser said. “But, based on the stories I heard from families on the Hill, these frustrations are nothing compared to the struggle to get loved ones the medical care they so desperately need. That’s why it’s so important for our families, providers, and patients to stay engaged and advocate. We cannot and won’t ever give up because ELSA is so much more than just another federal bill with double-spaced text in a Word document. ELSA is life-changing for real people who are affected by congenital anomalies and are doing everything they can to get medically necessary care.”

This group of four photos has headshots of the four legislators who are bill leads for ELSA.

Thankfully, the bill leads are just as committed to ELSA’s passage as we are. We cannot express our appreciation to Senators Tammy Baldwin (D-WI) and Joni Ernst (R-IA) and Representatives Anna Eshoo (D-CA-16) and Drew Ferguson (R-GA-3) enough.

*Senator Tammy Baldwin welcomed and thanked these youth advocates and all ELSA advocates on NFED Hill Day.*

“I am proud to be a partner to NFED and work alongside such tireless advocates fighting for people touched by ectodermal dysplasias and other birth abnormalities,” Senator Baldwin said.

With your support, I’ll keep fighting to get my Ensuring Lasting Smiles Act over the finish line in Congress, so we can finally guarantee that individuals born with congenital anomalies or birth defects have access to the health care coverage and treatments they need and deserve.
– Senator Baldwin

Walking for ELSA

This is a collage of photos of people walking on the Capitol Mall as part of the NFED walk.

Karl Nelsen and Soren Roe organized and led a walk on September 17 to the U.S. Capitol to kick off NFED Hill Day week and raise awareness and funds. Our determined walkers didn’t let a little rain dampen their enthusiasm. They livestreamed their walk while other advocates in the U.S. walked in their home towns. We are grateful to everyone who participated!

A group of people who walked for NFED in Minnetonka took a group photo. The second photo is the back of a man in a hot pink gorilla suit and he's pointing to his back.

Teamwork on the Hill

Training Advocates

Four people are at the podium who shared why they advocate. — We spent a day training our advocates for what to expect in their legislative meetings and what to say to help them prepare. This year, we had three guest speakers share the importance of advocating from their perspectives as a Congressional staffer, Aisling McDonough (upper left); a care provider, Dr. Timothy J. Fete (upper right); and a patient, Mary Beth Miller (lower left). Also, we are grateful to Ryder Abbott (bottom right) who led the training for youth advocates.

Bigger Than Ectodermal Dysplasias

The NFED is proud to lead the efforts of our ELSA team. The bill will not just help families affected by ectodermal dysplasias. It will help individuals with other congenital anomalies, too. Our Hill Day advocates represented 10 different conditions: ectodermal dysplasias, ameliogenesis imperfecta, cleft lip and palate, congenital cataracts, Crouzon syndrome, dentinogenesis imperfecta, Goldenhar syndrome, hemifacial microsomia, Moebius syndrome and oligodontia.

Several of these advocates reached out to us after Hill Day to express their thanks.

We just wanted to give a BIG thank you for all the hard work you put in to make this event so wonderful for all of the families. We are so grateful to the NFED. It was truly inspirational! We pray that the bill will get through both the House and Senate this go around!
– Les and Anna, Smile Train advocates and cleft child parents

Two female dentists and two other ELSA advocates pose with a staffer from a legislative office. — *Drs. Lisa Knobloch and Ana Mercado (left) were two of the dentists who joined patients with congenital anomalies to advocate on NFED Hill Day.*

Medical and dental professionals also joined us on the Hill and spoke up on behalf of the patients they serve.

“Thanks for such a well-organized Advocacy Day yesterday,” said Dr. Ana Mercado, Co-Director of the Orthodontic Craniofacial Program at Nationwide Children’s Hospital and Clinical Assistant Professor of Orthodontics at The Ohio State University College of Dentistry. “I thoroughly enjoyed and admired the precision planning that your team devoted to the event. Simply incredible.”

How You Can Help ELSA – Today!

A large group of advocates from New York meet with their legislator. — *We had a large number of advocates from New York with us for NFED Hill Day.*

You have the power to help ELSA, even before its reintroduction. It is the responsibility of each community that will benefit from ELSA to reach out and share their stories with their members of Congress. If legislative offices don’t hear from certain communities on a regular basis, there will certainly be efforts to remove coverages or limit the scope of ELSA.

You can use our advocacy web tool to easily ask your legislators to support and become an Original Co-Sponsor.

Write Congress Now

Or, if you already have relationships with your legislators and/or their staff, email them directly with your story and ask them to be an original co-sponsor of ELSA. Be sure and check out all of the resources we offer to make advocating easier.

Whichever method you choose, be sure to include your unique and powerful story. Speak from the heart. Explain the medical impact of your congenital anomaly and your insurance coverage struggles. That’s how we will be successful!

Thank You, NFED Hill Day Sponsors!

Hill Day requires extensive resources. We graciously thank our team of sponsors who provided financial support: The Louis & Gladyce Foster Foundation, American Cleft Palate Craniofacial Association, American Academy of Pediatric Dentistry, American Academy of Pediatric Dentistry Foundation, the Gott-Scott Family, SmileTrain, the Aniotzbehere family, Peter and Julie Durand, the Nelsen family, the Abbott family, American Academy of Ophthalmology, the Coleman Hayes family, Face to Face Foundation, Brin Frazier and Andrei Greenwalt, Karen S. McAndrew, DMD, MS, the Morgan family, myFace, Susan and David Reisberg, and the Snell family.

Two women in blue Hill Day shirts. One is wearing glasses. — *I am grateful to Jill Radley (left) who traveled from Arizona to be at Advocacy Day. We had advocates representing 38 states, which was wonderful!*

Passing ELSA will not be easy. I am asking each of you to step forward and help how you can. Let’s work together for a future where people affected by congenital anomalies have the benefits to get the medical care they need!