Cleft lip and palate and other craniofacial surgery for kids isn’t cosmetic, it’s lifesaving

It should be fundamentally irrational to all Americans that an insurer can deem a surgery that is required for a child to eat, breathe or speak as “cosmetic.” But this has been happening for years, and we have a solution in Congress. The Ensuring Lasting Smiles Act (ELSA) will guarantee that children and adults born with congenital facial conditions such as cleft lip or cleft palate receive the medically necessary care they deserve without wrongful insurance denials, often costing families tens of thousands of dollars out of pocket.

Despite existing state laws such as “ Wendolyn’s Law” in Arkansas , patients still face delays and denials for vital treatments, leaving families to foot the bill — insurance loopholes that bankrupt households who choose to help their child over all else.

About 4 percent of U.S. children are born with congenital anomalies impacting essential functions like swallowing, chewing, breathing, and hearing, yet health insurance denials continue despite state mandates. Roughly 1 in 1,000 babies born in the U.S. has a cleft lip and/or cleft palate. While congenital heart defects are more common, parents of a child with a craniofacial condition frequently face denials of coverage, including retroactively denying cases after a procedure has been completed. Can we imagine a world in which insurance companies denied patients the right to have pediatric heart surgery as “not medically necessary”?

ELSA ensures coverage for medically necessary treatments, not cosmetic procedures. When a child born with a cleft palate requires surgery to restore normal jaw function so they may chew and swallow correctly for the rest of their life, this is not cosmetic or elective; it is necessary. But right now, a health insurance company might declare the procedure should be covered by dental insurance and bounce it, only for a dental insurance company to push it back to medical — only to be denied.

In fact, even when the leading global experts at Approved Cleft and Craniofacial Teams write letters specifying why a procedure is medically necessary for proper function, insurance companies are still finding ways to deny a claim, many times with the claim review performed by family physicians and not by the experts who treat patients with craniofacial conditions.

Allowing a growing child or young adult to have a healthy, functioning facial structure is not something that should be up for debate because of insurance. Nonprofits receive letters asking for assistance from families around the country, in every state, from all walks of life and political affiliations. The stories we hear from mothers, fathers, grandparents, and patients are heartbreaking, and have been happening for years .

From families who have been denied insurance coverage of a child’s secondary bone graft surgery, so their child no longer has a hole in the roof of their mouth, to a story about an older child with a cleft lip who can’t breathe properly out of their nose and who is mocked in grade school — creating bullying and long-lasting emotional trauma — while a pediatric cleft surgeon could remedy the issue if the family could pay for it. These are medically necessary procedures, yet families can still get caught between medical and dental insurers and be left with enormous bills.

With wide bipartisan support and more than 70 professional societies and patient groups in support, including Sens. Tammy Baldwin (D-Wis.) and Joni Ernst (R-Iowa) and Reps. Neal Dunn, M.D. (R-Fla.) and Kim Schrier, M.D. (D-Wash.), ELSA is not controversial; it is essential. Families go through repeated complex procedures, many of which must be done in sequential order. A child may have 16 procedures by the time they are 16 years old — none are cosmetic. Individuals who do not receive timely, continuous care for their congenital anomalies face long-term physical and psychological injuries.

It’s time for Congress to help these families and pass the Ensuring Lasting Smiles Act, protecting Americans from financial ruin and, more importantly, helping children who deserve to live happy, fulfilling, healthy lives.

Adam Levy is executive director of the American Cleft Palate Craniofacial Association, the premier scientific resource and interdisciplinary professional network for healthcare providers serving patients with cleft lip, cleft palate, and craniofacial differences.