Americans born with cleft lip and palate should not be denied a lasting smile

For many Americans, cleft conditions may seem like a distant concern. But for thousands of families across the country, it is a long journey filled with resilience and courage to ensure a lasting smile.

Each year, nearly 6,000 babies in the United States are born with cleft lip and palate (CLP).

CLP is a congenital condition that occurs when the tissues forming the upper lip and roof of the mouth don’t fully join during early pregnancy, leaving a visible gap in the lip, the palate or both.

While surgical treatment exists, it is far from a one-time procedure. Children born with CLP typically require long-term multidisciplinary care, which includes multiple surgeries, speech therapy, dental work, and psychosocial support, often continuing into adulthood.

The lifetime cost can reach up to $101,000 per child. But, without care, basic functions like chewing, speaking or even breathing are impaired.

Insurers have denied cleft patients’ surgery claims before

Georgia is uniquely equipped with programs such as Children’s Medical Services, PeachCare for Kids and Medicaid to support children born with CLP.

However, these programs alone are not enough.

Coverage for critical procedures often varies on a case-by-case basis. And families without state-administered health insurance or whose private insurers classify cleft-related treatment as “elective” or “cosmetic” face overwhelming out-of-pocket costs and care delays.

For families relying on these programs, cuts to public insurance can mean the difference between timely surgery and years of untreated medical need. This is especially concerning given that nearly 52% of Georgia children are insured through Medicaid or the Children’s Health Insurance Program.

For patients like Ellie Mador, the road to care included many detours filled with delays and denials. Shortly after turning 18, Ellie was just days away from a jaw surgery to correct maxillary hypoplasia and malocclusion — a standard procedure for many cleft patients. She had spent years in orthodontic treatment to prepare. Her family’s health plan, administered by UnitedHealthcare and funded by her father’s employer, had covered some of her preoperative care.

However, her insurance denied coverage of the planned surgery, rejecting the medical necessity outlined by her plastic surgeon during the preauthorization process. Ellie’s family fought to appeal the decision through many channels. And, as a last resort, they contacted their U.S. senator’s constituent affairs office.

Finally, just mere hours before the surgery, her father’s employer agreed to provide coverage.

Medical necessity denials are a common tactic used by health plans to manage costs and service utilization.

Georgia members of Congress should cosponsor ELSA bill

Cleft cases are particularly vulnerable to this tactic, given that much of the treatment involves reconstructive plastic surgery, which insurance will attempt to categorize as “cosmetic.”

Credit: Hand

Esha Panchal. (Courtesy)

In Ellie’s case, this particular denial was made possible because of gaps in federal law. Since her insurance was a self-insured employer health plan, the employer paid for her medical claims directly. These plans are governed by a federal law called ERISA, or the Employee Retirement Income Security Act, which exempts them from state insurance mandates.

So even though her home state at the time had a law requiring cleft surgery coverage, that law didn’t apply to Ellie’s health plan. As of 2024, 63% of U.S. workers with employer-sponsored insurance are covered under self-insured plans governed by ERISA.

Even in states with protections in place, more than 100 million people’s insurance can legally deny coverage for medically necessary cleft care. Ellie later reflected, “In that moment, I needed a comprehensive federal law that applied to all children with clefts, no matter where they and their families work or reside, to ensure coverage for my medically necessary treatment.”

On May 8, the Ensuring Lasting Smiles Act, or ELSA, was reintroduced into the 119th U.S. Senate (S.1677) and U.S. House of Representatives (H.R. 3277). The bipartisan bill would require all group and individual health plans to cover medically necessary treatment for congenital anomalies.

Most importantly, it would close the legal loopholes that left Ellie’s care in limbo. We urge Georgia’s senators and representatives to cosponsor this legislation and stand with families across the state who could face similar coverage denials.

It’s time to ensure lasting smiles are protected by federal law.