All of our advocacy, dedication and background work have finally paid off! We are excited to announce that the Ensuring Lasting Smiles Act (ELSA) was reintroduced on Thursday, May 8th in both chambers of the 119th U.S. Congress.
We are extremely thankful for our dedicated bill leads: Senator Tammy Baldwin (D-WI), Senator Joni Ernst (R-IA), Congresswoman Kim Schrier (D-WA-08), and Congressman Neal Dunn (R-FL-02) and their staffs. They have been working behind the scenes to garner support from both the Democrats and the Republicans in the U.S. Senate and U.S. House of Representatives for ELSA.
What ELSA Will Do
From the start, the National Foundation for Ectodermal Dysplasias (NFED) has led the effort, alongside 70+ supporting organizations, to get the bill passed. This federal legislation will ensure that health insurance companies provide benefits for treatments for ectodermal dysplasias and other congenital anomalies.
Specifically, it requires a group health plan, and a health insurance issuer offering group or individual health insurance coverage, to provide coverage for medically necessary outpatient and inpatient items and services related to the diagnosis and treatment of a congenital anomaly or birth defect that primarily impacts the appearance or function of the eyes, ears, teeth, mouth, or jaw.
While we have 17 original co-sponsors in the U.S. House of Representatives and 11 original co-sponsors in the U.S. Senate, we need many more! Now is the time to enlist support from as many members of Congress as possible.
In addition to Senators Baldwin and Ernst, the Ensuring Lasting Smiles Act is co-sponsored by Senators Amy Klobuchar (D-MN), Lisa Murkowski (R-AK), Ben Ray Lujan (D-NM), Thom Tillis (R-NC), Angus King (I-ME), Roger Marshall (R-KS), Jack Reed (D-RI), Chuck Grassley (R-IA), Richard Blumenthal (D-CT), Cory Booker (D-NJ), and Jeff Merkley (D-OR).
In addition to Representatives Schrier and Dunn, ELSA is co-sponsored by Representatives John Mannion (D-NY-22), Mike Quigley (D-IL-05), Frank Mrvan (D-IN-01), Suzanne Bonamici (D-OR-01), Cleo Fields (D-LA-06), Greg Landsman (D-OH-01), Rashida Tlaib (D-MI-12), Rudy Yakym (R-IN-02), Eleanor Holmes Norton (D-DC), Debbie Dingell (D-MI-06), Gwen Moore (D-WI-04), Maria Salazar (R-FL-27), Troy Nehls (R-TX-22), Paul Gosar (R-AZ-09), Brian Babin (R-TX-36), Robert Aderholt (R-AL-04), Ilhan Omar (D-MN-05), Chrissy Houlahan (D-PA-06), Jill Tokuda (D-HI-02), Joe Neguse (D-CO-02), and Stephen Lynch (D-MA-08).
Your senators and representative can show their support for ELSA by signing on as a co-sponsor. Now that ELSA has been reintroduced, legislators can no longer be added as original co-sponsors. But, they can be co-sponsors, which is just as important. By signing onto this legislation, it’s an easy, visible way of showing their support for ELSA.
Are Your Legislators Original Co-Sponsors for ELSA?
Check this map to see if your legislators are original co-sponsors. If you don’t see them, now is the time to ask them to sign on.
Map for U.S. House of Representatives
If your federal legislators did not sign on as Original Cosponsors, please reach out to them immediately and ask them to cosponsor ELSA. All NFED members and ELSA advocates need to reach out to your federal legislators immediately and ask them to sign on as a cosponsor of ELSA.
Let them know you are counting on their support and that time is of the essence.
Here’s How to Take Action Immediately
Take Action and Advocate Now!Please follow these steps:
● Advocated before? If you have met with your legislators and/or their staff during a previous advocacy or Hill Day event, reach out directly to them using the email you received. If you need this contact information from a past NFED Hill Day, reach out to becky@nfed.org for help.
● All other advocates – Use our easy-to-use web tool to reach out to your two senators and representative. Take Action Now!
● Share this advocacy card with your family, friends and networks. Explain why ELSA is important to you, your community or your patients. Ask them to join our cause to get this legislation passed. Invite them to scan the QR code and use the web tool to advocate. Remember every email or phone call matters! Anyone can advocate for ELSA.
● If an office indicates that they are willing to become a co-sponsor, email the co-chairs of our Advocacy Committee, Becky Abbott and Kevin Koser, with an update to ensure the office is added to the bill as a supporter.
● If legislative offices have questions regarding plans for ELSA in the 119th Congress, have them connect with Senator Baldwin/Ernst or Representative Schrier/Dunn offices. They will be able to further educate and provide more detailed information. You can also copy becky@nfed.org on any legislative emails if you need further support.
Timing is Critical
Strong bipartisan, bicameral support of ELSA will continue to be our highest priority. The clock is ticking and we need your legislator’s support to move ELSA forward before this Congress ends on January 3, 2027.
Your voice and story are the most important and powerful tools you have to ensure this legislation is passed. Every story counts and everyone can advocate for ELSA. When you are sharing your story with your senators and representative or their staff, keep in mind that there are individuals and families all across the United States patiently waiting for ELSA to pass so they can receive the treatment they need and deserve.
Connect with Other Advocates and Stay in the Know
Once you have taken action, take a moment to join the Ensuring Lasting Smiles Act Advocates Facebook Group and Register as an Advocate to receive updates and calls to action. Bill numbers will be generated approximately two to three days after reintroduction. Once we have those numbers we will share them on social media, in the updated Advocacy Resources documents and provide them in future newsletters.
All of us at the NFED are dedicated to seeing ELSA pass. But, there’s no way we can do it alone. We need you. Please join our cause. Act today.
Take Action and Advocate Now!Your story has the power to help ELSA move forward and for Team ELSA to make history!
“I’m proud of our bill leads, both old and new, for working so diligently over the last couple of years to strengthen ELSA, working with our patient and professional organizations and various Congressional committees, in order to reintroduce it here in the 119th Congress. This process is a marathon, not a sprint, and it’ll be well worth our time and patience because the ELSA will have such a positive impact on so many people affected by congenital anomalies when it becomes law.” – Kevin Koser, Co-Chair NFED Family Advocacy Committee
“It’s an honor to advocate alongside passionate patient and provider advocates who are united in a common goal to ensure individuals and children born with congenital anomalies receive the medically necessary treatments they deserve. We are fortunate that this advocacy initiative is being led by extraordinary bill leads who not only understand the importance of passing the Ensuring Lasting Smiles Act (ELSA), but have and continue to make it a priority to move ELSA forward. We are grateful for every advocate and member of Congress who stand beside us and support the efforts to move this life-changing legislation across the finish line in the 119th Congress.” – Becky M. Abbott, MPH, Co-Chair NFED Family Advocacy Committee & Director, Treatment & Research Advocacy
“For millions of Americans, medically necessary care for birth defects can cost thousands of dollars out of pocket, or for others, it is entirely out of reach because of the cost – despite having health insurance,” said Senator Baldwin. “I’m proud to work with Democrats and Republicans to put this care in reach so more Americans can lead healthy lives, and more families can focus on caring for their loved ones, not figuring out how they will afford medically necessary care.” Senator Tammy Baldwin (D-WI)
“Passing the Ensuring Lasting Smiles Act will be life-changing for our community. We are deeply grateful to our bill leads for championing this important legislation, which will greatly improve access to dental care, which is medically necessary, for individuals affected by rare disorders. I can imagine a world where children and adults born with congenital anomalies finally have access to the treatment they need — and deserve. Teeth are not cosmetic; they are essential to health, function, and quality of life.” – Mary Fete, NFED Executive Director
Click here to read the joint press release from ELSA bill leads.
