Senate committee hears SJR 16 urging federal coverage for treatments of congenital anomalies

Senate Health and Social Services Committee Chair Dunbar opened the April 10 hearing and Senator LB Grama Jackson introduced Senate Joint Resolution 16, which would urge the U.S. Congress to support the Insuring Lasting Smiles Act to require private health plans to cover diagnosis and treatment for people born with congenital anomalies.

The resolution would ask Congress to require coverage of services and items ‘‘that functionally improve, repair, or restore any body part that is medically necessary for normal bodily functions or appearance as determined by the treating physician’’ and to bar more restrictive limits or cost sharing than those applied to other medical and surgical benefits.

The issue matters to families because some necessary procedures for rare congenital conditions are currently treated as cosmetic and not covered by insurers, creating large out-of-pocket costs and barriers to care. Senator Jackson told the committee that hypohidrotic ectodermal dysplasia (HED), a condition that affects hair, skin and tooth development, is one example and that available dental and surgical care can be financially burdensome for affected families.

Emily Brubaker of Anchorage testified remotely. Brubaker said she was diagnosed with hypohidrotic ectodermal dysplasia at age 2 and that the condition affects her hair, skin and teeth. She said Medicaid does not cover ‘‘medical expenses for individuals in the United States with congenital anomalies’’ because insurers often deem the procedures cosmetic. Brubaker estimated her family would face about $100,000 in out-of-pocket dental costs and said the federal Insuring Lasting Smiles Act — which she described as passed by the U.S. House in the 117th Congress but not taken up in the Senate — would change that by requiring private plans to cover medically necessary procedures for people with rare congenital anomalies.

Senator Hughes asked whether Medicaid covers the treatments; Brubaker responded that Medicaid does not cover these procedures in the United States as they are often considered cosmetic. Senator Hughes and other committee members thanked Brubaker for her advocacy and noted the financial and practical implications for families.

After questions, Chair Dunbar said the committee would set SJR 16 aside and schedule public testimony at a later date; Senator Jackson and staff indicated they would return with additional invited testimony when ready.

The committee did not adopt any amendments or take a final vote on SJR 16 at this hearing; the item was tabled for further consideration and public testimony to be scheduled.