In the United States, health plans systematically and routinely deny claims and appeals for medically-necessary procedures related to congenital abnormalities or birth defects. This practice leaves families the burden of how to pay for their child’s treatment or procedures that are required to repair function — and to help kids enjoy happier, healthier childhoods.

About 4 percent of children born in the U.S. have congenital abnormalities or birth defects that affect the way they develop, function, or look, often for the rest of their lives.

Sen. Tammy Baldwin (D-WI) and Sen. Joni Ernst (R-IA), along with Representatives Collin Peterson (D-MN) and David Young (R-IA) introduced the bipartisan Ensuring Last Smiles Act (ELSA) in 2018 to address these coverage denials and ensure that children suffering from birth defects and anomalies get the treatment they need.

The legislation would:

  • Ensure that all group and individual health plans cover medically necessary services, including needed dental procedures, as a result of congenital abnormalities,
  • Stipulate that such coverage include services and procedures that functionally repair or restore any missing or abnormal body part that is medically necessary to achieve normal body functioning or appearance, and clarifies that this includes adjunctive dental, orthodontic or prosthodontic support; and
  • Exclude cosmetic procedures or surgery

Will you join us in supporting ELSA?

How You Can Help

Together, we can improve the quality of life for all individuals affected by these disorders. Organizations that become official supporters of the Ensuring Lasting Smiles Act help show our legislators that this life-changing issue requires urgent attention. By joining us, you’ll add your voice to a message that Americans care about fair and just medical treatment for children affected by birth defects.

ADVOCACY RESOURCES: Check out our Advocacy Resources page for helpful information and resources to help you share your story and advocate to your legislators.

For our efforts to be successful, we need supporters like you who will reach out to policymakers about ELSA. It’s equally powerful to ask your organization’s constituents and lobbyists to contact their legislators, too.

Become an Advocacy Sponsor

We’re already seeing incredible support from the American Association of Oral and Maxillofacial Surgeons, American Dental Association and American Society of Plastic Surgeons.

American Association of Oral and Maxillofacial Surgeons
American Dental Association
American Society of Plastic Surgeons

These organizations have garnered support from legislators and held Hill Days to raise awareness for ELSA, effectively bringing professional and patient voices to the need for this legislation.

Show Your Support

Join the National Foundation for Ectodermal Dysplasias and the organizations listed below in helping families affected by all congenital anomalies by becoming an ELSA supporter. Or, sponsor our advocacy efforts with a financial gift.

We are proud to be supporting the Ensuring Lasting Smiles Act along side the following organizations:

Become a Supporter of ELSA

When you sign-on to support the Ensuring Lasting Smiles Act (ELSA), your organization agrees to officially support and advocate for the bill. We’ll add your organization’s name to our growing list of supporters and include it whenever we reference the groups supporting this legislation. On occasion, NFED will also send email updates to share the latest ELSA news and progress.

For questions about supporting ELSA, please contact Mary Fete at

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