Skip to content

Senators Ernst and Baldwin Introduce Bipartisan Reform to Ensure Coverage for Children Born with Congenital Anomalies or Birth Defects

WASHINGTON– U.S. Senators Joni Ernst (R-IA) and Tammy Baldwin (D-WI) introduced bipartisan legislation today to ensure health insurance coverage for needed treatments and procedures for individuals with a congenital defect, birth abnormality, or disorder. While health insurance plans provide coverage for most treatments and procedures for these conditions, claims for dental and oral-related procedures for congenital defects or birth abnormalities are typically denied. The Ensuring Lasting Smiles Act (ELSA) would close this coverage gap and ensure that health plans cover all medically necessary services to treat a patient’s congenital defect or birth abnormality, including procedures necessary for maintaining overall health and achieving normal body function.

Senator Ernst joined Senator Baldwin in introducing this legislation after meeting with the Steele Family of Dallas County, Iowa. At six years old, Allison Steele was diagnosed with Ectodermal Dysplasia (ED), a rare congenital condition that causes the abnormal development of an infant’s skin, hair, nails, teeth, and sweat glands.  Having been born with misplaced and missing teeth, even with insurance, the Steele family is looking at paying thousands of dollars in out-of-pocket costs to provide Allison with functional teeth.

“Those born with congenital anomalies or birth defects should be provided with necessary medical services, and the Ensuring Lasting Smiles Act will help correct a gap in health insurance coverage and relieve the financial burden for American families. It’s stories like Allison’s that make this legislation so important, ” said Senator Ernst.

Senator Baldwin worked on this legislation after hearing the story of 13 year-old Aidan Abbott of Slinger, Wisconsin who was born with Ectodermal Dysplasia (ED), a rare congenital disease, and who has needed intense dental and oral care such as reconstructive surgeries throughout his life, among other services related to ED. Despite having comprehensive health insurance, the Abbotts were denied coverage for Aidan’s dental work and forced to pay out of pocket for his surgeries. Although most health plans cover care for congenital anomalies, claims are routinely denied or delayed for any oral or dental related procedures due to an individuals’ disorder.

“Aidan’s story has inspired my work on this issue to guarantee that individuals born with congenital anomalies have access to the comprehensive health treatments and coverage they need and deserve,” said Senator Baldwin. “Despite covering all of his other medical care, his family’s insurance continues to refuse to cover his dental care needs, forcing them to spend thousands of dollars out of their own pockets. That’s why I’m introducing bipartisan legislation to close this loophole and make sure families like Aidan’s can get the health care they need at a price they can afford.”

The bipartisan legislation is supported by the American Association of Oral and Maxillofacial Surgeons (AAOMS), the American Society of Plastic Surgeons (ASPS), the National Foundation for Ectodermal Dysplasias (NFED), American College of Surgeons, American Dental Association, American Academy of Dermatology Association, American Association of Orthodontists, American Academy of Neurology, Rare and Undiagnosed Network (RUN) and EveryLife Foundation.

“Our community is incredibly grateful to our champions Senator Baldwin and Senator Ernst,” said Mary Fete, executive director of the National Foundation for Ectodermal Dysplasias. “ELSA is life changing for individuals who are affected by ectodermal dysplasias and other congenital anomalies. It means that they will receive the medically necessary treatment, including oral health care without fighting a long and often losing battle.”

Specifically, the Ensuring Lasting Smiles Act would:

  • Ensure that all health plans cover medically necessary services, including reconstructive surgeries and oral-related procedures, as a result of congenital anomalies or birth defects;
  • Stipulate that such coverage include services and procedures that functionally repair or restore any missing or abnormal body part that is medically necessary to achieve normal body functioning or appearance, and clarifies that this includes adjunctive dental, orthodontic or prosthodontic support; and
  • Exclude cosmetic procedures or surgery.

More information on the Ensuring Lasting Smiles Act is available here.