With about six weeks left in the 117th session of Congress, the mood on Capitol Hill feels hopeful and positive for getting the Ensuring Lasting Smiles Act (ELSA) passed! 

The National Foundation for Ectodermal Dysplasias (NFED) sponsored our third (virtual) trip to Capitol Hill this year on October 19. Committed advocates, including children, teens and adults, asked their U.S. Senators to make ELSA a priority before the end of the year and get it advanced through Congress so the President can sign it into law. Legislative staff thanked our advocates, praised their persistence and attributed ELSA’s success and progress to it.

“Virtual Advocacy Day with the Senate was an amazing event,” NFED Executive Director Mary Fete said. “Two hundred ninety-three advocates from multiple patient organizations, along with medical and dental professionals, came together with one goal in mind: to get the medically necessary treatment associated with congenital anomalies covered under insurance plans, care that they need and deserve.”

I ended the day in awe of the strength, the spirit and the tenacity of our community and other communities like ours. I am energized and have great hope that we will get ELSA passed this year in the 117th Congress. We are not yet to the finish line; we have work to do. Together, we are strong. Together, we can do this!

– Mary Fete

Advocates passionately and sometimes tearfully, shared their stories in 94 meetings with legislative staff. A few adults talked about choosing to stop their treatment as teenagers because they didn’t want their parents to endure more financial hardship. One advocate’s father worked four jobs to help pay for her care. While advocates’ congenital anomalies may differ, they share the frustrating challenge of getting insurance to provide benefits for their medically necessary care. Too many do without.

Becky Abbott, NFED’s Director of Treatment and Research Advocacy, felt a real shift in the level of commitment from legislative offices.

“ELSA has always had strong, bi-partisan support. But, on the Oct. 19 Advocacy Day, the legislative staff had nothing but positive feedback about the bill. There seems to be even more support and a real sense of urgency to act. They want to see this bill get over the finish line. It’s exactly what we need as we head into these last few weeks of the 117th Congress.”

What You Can Do Now – And Till the End of the Year

Christina Hartmeyer, who is affected by ectodermal dysplasia, has been passionately advocating for ELSA since we began.

Our bill leads, Senators Tammy Baldwin (D-WI) and Joni Ernst (R-IA), are feverishly working to advance the bill. And yes, we have the support of many other senators. Forty-two are co-sponsors. But, that doesn’t mean we can sit back and wait! As we know, things can change quickly on the Hill. It’s time to keep the pressure on by emailing your Senators.

The easiest way is to use our online advocacy tool to write to the two U.S. Senators from your state. We wrote the message for you! You do have the option to add a few personal sentences about why you would like the bill passed. It takes just a few minutes. Email them once a week till the end of year. If you participated in the Advocacy Day with the Senate, please only follow up with the person(s) you met with in your meetings.

Grateful for Team ELSA

Hosting three advocacy days in one year takes enormous resources. We are grateful to the following sponsors for their financial support: SmileTrain, John Powers Middleton, The Aniotzbehere family, the Karon family, the Long family, myFace, Soft Bones and Team Sammi.

The beauty of ELSA is that it will help people with all congenital anomalies. In addition to the many supporting organizations that participated in this Advocacy Day, like FD/MAS Alliance, March of Dimes, myFace, SmileTrain, Soft Bones, The XLH Network and others, individuals representing a variety of congenital anomalies also advocated alongside NFED families.

NFED advocate, Ashley Turner, garnered the support of her co-workers at Coldwell Banker in advocating for the bill which will help her with her dental care.

Legislators heard from individuals affected by aphakia, dentinogenesis imperfecta, cleft lip/palate, fibrous dysplasia, craniofacial microsomia, amelogenesis imperfecta, congenital cataracts, x-linked hypophosphatemia, cleidocranial dysplasia, Apert syndrome and others. This helped us share the broad-reaching impact ELSA would have if passed into law. Thank you to everyone who bravely shared their personal story!

We’re also incredibly grateful for the medical and dental professionals who joined us. These providers were able to share stories on behalf of the patients they care for and provide an additional perspective on the benefits of ELSA.

As always, we thank our fearless advocates, the dedicated Family-Driven Advocacy Committee and our Advocacy State Leads. Each of you played a key role in our success.

Let’s Finish Strong

ELSA has been an NFED priority since 2017. Friends in Washington, D.C., continue to marvel about how fast ELSA has progressed in such a short time. Never have we been this close to getting it passed. The U.S. House of Representatives passed it on April 4. Now it’s time to get the U.S. Senate to pass it and get it to the President.

Mark your calendars for Wednesday, November 16. Team ELSA is going to charge forward with an Advocacy Day of Action. We invite you, your family, friends, and community to join us to advocate. Watch your email and social media for more information.

Also, joining our Ensuring Lasting Smiles Act Advocates Facebook group and registering as an advocate are the best ways to learn about ELSA’s progress.

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