The Ensuring Lasting Smiles Act (ELSA) would require all group and individual health care plans to cover medically necessary services resulting from congenital abnormalities. That coverage would include services and procedures for any missing or abnormal body part necessary to achieve normal body function, including teeth.

By focusing on procedures to improve body function, ELSA won’t include coverage for cosmetic surgery to reshape normal structures of the body in order to improve appearance.

The Issue

People born with ectodermal dysplasias are often unable to properly develop teeth. Their teeth may be missing, completely absent, have defective enamel or be shaped differently. If the teeth are not repaired or replaced, these individuals could have chewing, swallowing, digestive, speech and self-esteem issues.

Young boy with dentures

On average, someone born with ectodermal dysplasia spends a significant amount of money on necessary medical and dental care throughout their lifetime. We’ve seen families sell their cars, remortgage their homes, and forego a college education to afford medically necessary dental care. Far more families simply go without care because they can’t afford it.

Individuals who lose their teeth due to an accident receive dental benefits under the existing statutes. Yet, those who are missing teeth due to ectodermal dysplasias do not. ELSA would change this.

Bigger Than Ectodermal Dysplasias

This bill would help more families than those affected by the ectodermal dysplasias. It would cover all congenital anomalies. According to the Center for Disease Control and Prevention (CDC), one in 33 babies in the United States is born with a congenital anomaly.

Of those 120,000 children born annually with birth defects, approximately 40,000 require reconstructive surgery.

Although medical professionals and surgeons are able to correct many of these problems, some insurance companies deny access to care by labeling the procedures as “cosmetic” or “non-functional” in nature.

We’re working to pass a law guaranteeing the payment of health insurance benefits for necessary medical care and treatment due to a congenital anomaly.

Ensuring Lasting Smiles Act

ELSA would address delays and denials in coverage, and ensure that children suffering from birth defects and anomalies get the treatment they need.

The bill would amend the Public Health Service Act, the Employee Retirement Income Security Act of 1974, and the Internal Revenue Code of 1986 to require that group and individual health insurance coverage, as well as group health plans, provide coverage for treatment of a congenital anomaly or birth defect.

Abbotts with Senator Baldwin
Senator Baldwin standing with the Abbot Family

Sen. Tammy Baldwin (D-WI) worked on this legislation after hearing the story of 13-year-old Aidan Abbott of Slinger, Wisconsin who was born with ectodermal dysplasia. He needed intense dental and oral care and will continue to need reconstructive surgeries throughout his life, among other services related to ectodermal dysplasia. Despite having comprehensive health insurance, the Abbotts were denied coverage for Aidan’s dental work and forced to pay out of pocket for his treatments.

Ensures Coverage for Later-Stage Reconstructive Procedures

It’s relatively rare for a child with a congenital deformity or developmental anomaly to undergo one procedure and correct all associated health implications. On average, these children can expect anywhere from three to five surgical procedures and many more treatments before achieving structural normalcy and function in the affected body parts.

Although carriers may provide coverage for the initial procedures, they often resist coverage of the later stage procedures, claiming they are cosmetic and not medically necessary. Denial or delay of these reconstructive procedures could lead to long-term physical and psychological injuries.

This legislation would close an insurance coverage loophole for people born with congenital anomalies who need complex oral restorative care. ELSA would ensure that families like the Abbotts have coverage for all medically necessary services and procedures related to congenital anomalies, including but not limited to the many types of ectodermal dysplasias.

Download the ELSA Info Sheet

Allies in Our Corner

A variety of organizations are also advocating for ELSA and joining the NFED as a partner in our advocacy efforts. Check out our growing list of supporters and see how organizations can get involved.

Sen. Baldwin also worked to raise awareness for ectodermal dysplasias on Capitol Hill by introducing Senate Resolution 226 (S.Res.226) in 2017, highlighting key information about ectodermal dysplasias to educate our legislators. Check to see if your senator has co-sponsored S.Res.226.

During the first Ectodermal Dysplasias Advocacy Day on Capitol Hill on July 19, 2017, Rep. Jackie Speier (D-CA) also introduced House Resolution 464 (H.Res.464) highlighting key information about ectodermal dysplasias. Check to see if your representative has co-sponsored H.Res.464.

Help Us Advocate for ELSA

Our advocacy efforts count on the support of families like yours. Will you join us in reaching out to legislators? When you register as an advocate, we’ll send you occasional emails about timely actions you can take to help us push this bill through to become a law. It could be an action as small as sending a pre-written email or as large as meeting with your state senator in person. Let’s show Congress what it means to be in the NFED family and get this bill passed!

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