It seems irrational to many in the United States that a health insurer can label a surgery needed for a child’s ability to eat, breathe, or speak as merely cosmetic. This has persisted over the years, yet a legislative solution exists in Congress. The Ensuring Lasting Smiles Act (ELSA) aims to ensure children and adults born with congenital facial conditions, such as cleft lip or palate, receive the necessary medical care without facing wrongful insurance denial. These denials often burden families with significant out-of-pocket costs.
Even with state laws like “Wendolyn’s Law” in Arkansas, patients continue to struggle with delays and denials for vital treatments, forcing families to pay themselves. Insurance loopholes often lead to severe financial strain for households focused on aiding their children. Approximately 4% of children in the U.S. are born with congenital anomalies affecting crucial functions like swallowing, chewing, breathing, and hearing. Despite state mandates, health insurance continues to deny coverage. Specifically, around 1 in 1,000 U.S. births involves a cleft lip and/or cleft palate.
Though congenital heart defects are more prevalent, families with children having craniofacial conditions frequently see coverage denied or even revoked after treatments. It is unthinkable to consider a world where pediatric heart surgeries face denial as being ‘not medically necessary.’ ELSA clarifies the coverage for medically necessary treatments, distinguishing them from cosmetic procedures. For instance, surgery for a cleft palate is essential for restoring normal jaw function, facilitating proper chewing and swallowing throughout life. Current insurance policies might wrongly categorize such procedures under dental insurance, leading to coverage denial.
Even expert opinions from Approved Cleft and Craniofacial Teams, specifying the medical necessity of these procedures, sometimes fail to persuade insurers. Reviews often fall to family physicians rather than specialists in craniofacial conditions, further complicating approval.
Ensuring that a growing child has a healthy, functional facial structure should be unquestioned, yet insurance challenges persist. Many families across the nation appeal for nonprofit assistance due to these issues. These stories resonate from various backgrounds and political views, poignantly highlighting the struggles endured.
Countless families face insurance denial for surgeries like secondary bone grafts that would resolve significant issues, such as a hole in the mouth’s roof. Older children with cleft lips who experience teasing and respiratory issues due to nasal blockages face emotional trauma that medically necessary surgeries could alleviate if financially feasible.
ELSA garners wide bipartisan support, with over 70 professional societies and patient advocacy groups endorsing it, including figures like 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’s passage is urgent, not controversial. Many children undergo numerous sequential procedures by age 16, all medically necessary rather than cosmetic. Without timely and consistent care, individuals with congenital anomalies endure long-term physical and emotional harm.
Congress must act to support these families by passing the Ensuring Lasting Smiles Act. This legislation would safeguard Americans from financial disaster and ensure children achieve fulfilling, healthy lives. Adam Levy, the executive director of the American Cleft Palate Craniofacial Association, underscores the urgency of this legislation.
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