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 individuals and families with the burden of how to pay for their or their child’s treatment or procedures that are required to repair function — and to help them enjoy happier, healthier lives.
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.
The bipartisan Ensuring Lasting Smiles Act (ELSA) has been re-introduced in the 119th Congress to address these coverage denials and ensure that individuals suffering from birth defects and anomalies get the treatment they need. While ELSA passed in the U.S. House in 2022, it did not make it to the floor in the U.S. Senate.
The legislation would:
- Require a group health plan and a health insurance issuer offering group or individual health insurance coverage, to provide coverage for 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.
- Ensuring access to the medically necessary items and services necessary to functionally improve, repair, or restore bodily function or approximate a normal appearance due to a congenital anomaly, that primarily impacts the appearance or function of the eyes, ears, teeth, mouth, or jaw, such as cleft lip and palate, maxillofacial abnormalities, microtia, hypodontia, and congenital aphakia. Including any medically necessary item or service to achieve normal body functioning, and it clarifies that coverage includes adjunctive dental, orthodontic, and prosthodontic support.
- Explicitly excludes coverage of cosmetic surgeries.
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 and congenital anomalies. 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 and individuals 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 federal 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 advocates to contact their legislators, too.
For questions about supporting ELSA, please contact Becky M. Abbott, Co-chair NFED Family Advocacy Committee at becky@nfed.org.
Featured Advocates
We’re already seeing incredible support from the American Association of Oral and Maxillofacial Surgeons, American Dental Association and 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:
American Association for Dental, Oral, and Craniofacial Research
American Academy of Dermatology Association
American Academy of Facial Plastic and Reconstructive Surgery
American Academy of Ophthalmology
American Academy of Oral and Maxillofacial Pathology
American Academy of Oral and Maxillofacial Radiology
American Academy of Pediatrics
American Academy of Pediatric Dentistry
American Association of Oral and Maxillofacial Surgeons
American Association for Pediatric Ophthalmology and Strabismus
American Association of Orthodontists
American Association of Women Dentists
American Behcet’s Disease Association
American Cleft Palate-Craniofacial Association
American College of Prosthodontists
American Prosthodontic Society
American Society for Dermatologic Surgery Association
American Society of Dentist Anesthesiologists
American Society of Maxillofacial Surgeons
American Society of Pediatric Otolaryngology
American Society of Plastic Surgeons
Association of Dental Support Organizations
Born a Hero, Research Foundation
Bridge the Gap – SYNGAP Education and Research Foundation
Children’s Hospital of Wisconsin
Costello Syndrome Family Network
Dermatology Nurses’ Association
EveryLife Foundation for Rare Diseases
FACES: The National Craniofacial Association
Foundation for Ichthyosis and Related Skin Types, Inc. (FIRST)
Gillette Children’s Specialty Healthcare
International Pemphigus and Pemphigoid Foundation
Lawrence C. Wright Craniofacial Center at John R. Oishei Children’s Hospital
Lupus and Allied Diseases Association
National Association of Dental Laboratories
National Organization for Rare Disorders
Pathways for Rare and Orphan Studies
Project Accessible Oral Health
Soft Bones: The US Hypophosphatasia Foundation
Sujey Morgan, DDS – Boston Medical Center
The APS Type 1 Foundation Inc.
Virginia Council of Nurse Practitioners
Wisconsin Speech-Language Pathology and Audiology Association (WSHA)
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 Becky M. Abbott, Co-chair NFED Family Advocacy Committee at becky@nfed.org.