Advocacy Opportunities

The Ensuring Lasting Smiles Act/ELSA Bill (H.R. 1916/S. 754)

The most common concern we hear from U.S. families living with a craniofacial difference is that their health insurance plans have denied their benefits regarding necessary medical and dental care.

We are working to put an end to this by advocating to Congress, in partnership with over 70 other organizations, to get the Ensuring Lasting Smiles Act (ELSA) signed into law.

The goal of ELSA is to close health insurance loopholes that currently prevent individuals born with congenital and craniofacial anomalies from getting the coverage they need for medically necessary treatments and procedures, and to guarantee comprehensive coverage for these individuals from birth through adulthood. This piece of legislation would be a game changer for individuals with facial differences and their families, and myFace will not stop fighting until it is passed into law. 

If ELSA gets signed in to law, it would guarantee ongoing health insurance coverage for medical, dental, and orthodontic support from birth into adulthood for people impacted by congenital anomalies – including craniofacial differences. This game-changing legislation would ensure that members of the craniofacial community would receive the coverage they need – and deserve – for necessary treatments.

The Fight for ELSA Continues

myFace, along with a broad coalition of 70+ national health care professional and patient advocacy organizations, took part in a number of advocacy initiatives led by the National Foundation of Ectodermal Dysplasias (NFED) throughout 2022 to advocate for the passage of an important piece of legislation: the Ensuring Lasting Smiles Act (ELSA)

Unfortunately, despite being passed in the House of Representatives with 310 votes on April 4th, 2022 – and gaining 62 sponsors/cosponsors in the Senate – ELSA was not ultimately passed into law in the 117th Congress that ended on January 3rd, 2023. 

However, the fight continues, as ELSA has been re-introduced in the 118th Congress.

What You Can Do To Help

(1) We are thrilled to share that NFED  is hosting an in-person Advocacy Day on the Hill for the first time in four years this fall!

Please join us in Washington, D.C. September 18 – 19 to meet with your legislators and/or their staff about the importance of ELSA for individuals and families affected by congenital anomalies. We need voices from all 50 states! There is a travel stipend available on a first-come, first-served basis. Registrations with travel stipend requests must be received by Friday, June 30th. Learn more and register today!

(2) Post about the #EnsuringLastingSmiles Act on social media and tag your Senators, asking them to make ELSA a priority.

(3) Tell your friends and family about how important ELSA is to your family and ask them to reach out to their Senators to support this bill.

(4) Join the Ensuring Lasting Smiles Act Advocates” Facebook group. It’s a great way to connect with other ELSA advocates! This private group provides a forum where you can ask questions, share successes and challenges, and receive regular updates on the status of ELSA. It also provides helpful suggestions for what you can do to advocate for ELSA.

Kristin Pfeifauf explains the critical need of access to surgeries and treatments for those with congenital anomalies.
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Downloadable content to help parents and families navigate the everyday issues that can accompany life with a craniofacial condition.

Information includes:

  • nutrition needs
  • building self-esteem
  • finding a care team
  • tips for healthcare appointments
  • and more!

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