Push for Ensuring Lasting Smiles Act to Protect Families

In the United States, it seems irrational that insurance companies can classify surgeries needed for a child’s ability to eat, breathe, or speak as “cosmetic.” Many families face this issue each year; a proposed solution in Congress aims to address it. The Ensuring Lasting Smiles Act (ELSA) intends to ensure that children and adults born with congenital facial conditions, like cleft lip or cleft palate, receive the medically necessary care they’ve been denied by insurers. Such denials often force families to pay tens of thousands of dollars out of pocket.

Current laws, such as “Wendolyn’s Law” in Arkansas, safeguard patients against delays and denials for essential treatments, yet families still face financial burdens due to insurance loopholes. Approximately four percent of U.S. children are born with congenital anomalies affecting swallowing, chewing, breathing, and hearing, resulting in high rates of insurance denials despite state mandates.

Statistics show that roughly one in 1,000 babies in the U.S. are born with cleft lip and/or cleft palate. Although congenital heart defects are more common, coverage denials for craniofacial conditions are frequent. In some cases, insurance companies retroactively deny coverage even after procedures have been completed. ELSA seeks to ensure coverage for medically essential treatments, not cosmetic procedures.

For a child born with a cleft palate, surgery is vital to restore normal jaw function for proper chewing and swallowing. However, health insurance companies might classify these procedures as “dental” and deny coverage. Even when leading global experts provide documentation stating the medical necessity for these procedures, insurance companies often deny claims; reviews are sometimes performed by non-experts.

“Allowing a growing child or young adult to have a healthy, functioning facial structure is not something that should be debated due to insurance.”

Nonprofits report receiving pleas for assistance from families across the nation who face insurance hurdles. Many families share heartbreaking stories of denied coverage for necessary surgeries, such as the secondary bone graft surgery needed to close a hole in a child’s mouth, or treatments to improve breathing and prevent bullying related to facial anomalies. Without proper coverage, families are caught between medical and dental insurers, faced with substantial expenses.

ELSA has broad bipartisan support, with backing from more than 70 professional societies and patient groups, including Sens. Tammy Baldwin (D-Wis.) and Joni Ernst (R-Iowa), as well as Reps. Neal Dunn, M.D. (R-Fla.) and Kim Schrier, M.D. (D-Wash.). Its proposals are crucial to aiding families who frequently undergo multiple complex procedures that are medically necessary, not cosmetic.

Families awaiting timely, continuous care for congenital anomalies can face long-term physical and psychological harm. Congressional action is essential to prevent financial devastation for these families and, more importantly, to support the health and well-being of children in need.

Adam Levy, executive director of the American Cleft Palate Craniofacial Association, emphasizes the importance of ELSA as a resource for healthcare providers serving patients with cleft lip, cleft palate, and craniofacial differences.