03.16.21

Baldwin, Ernst, Eshoo, Ferguson Introduce Bipartisan, Bicameral Reform to Ensure Coverage for Children Born with Congenital Anomalies or Birth Defects

WASHINGTON, D.C. - U.S. Senators Tammy Baldwin (D-WI) and Joni Ernst (R-IA), and U.S. Representatives Anna Eshoo (D-CA) and Drew Ferguson (R-GA) today reintroduced bipartisan, bicameral legislation to ensure health insurance coverage for needed treatment and procedures for individuals born with congenital anomalies or birth defects. The Ensuring Lasting Smiles Act would close a coverage gap to ensure that health plans cover medically necessary services related to a patient’s anomaly or birth defect, including any serious dental and oral-related procedures that are necessary to maintaining health and overall function.

The bill has strong bipartisan support in the Senate, where it is also led by Senators Sherrod Brown (D-OH) and Lisa Murkowski (R-AK), and cosponsored by Senators Amy Klobuchar (D-MN), Roger Marshall (R-KS), Jeanne Shaheen (D-NH), Roger Wicker (R-MS), Sheldon Whitehouse (D-RI), Thom Tillis (R-NC), Debbie Stabenow (D-MI), Kevin Cramer (R-ND), Chris Van Hollen (D-MD), John Boozman (R-AR), Gary Peters (D-MI), Susan Collins (R-ME), Ed Markey (D-MA), Shelley Moore Capito (R-WV), Cory Booker (D-NJ), Lindsey Graham (R-SC), Tina Smith (D-MN), Chuck Grassley (R-IA), Kyrsten Sinema (D-AZ), Jerry Moran (R-KS), Chris Murphy (D-CT), Steve Daines (R-MT), Richard Blumenthal (D-CT), Mike Braun (R-ID) and Jack Reed (D-RI). In the House, there are 132 bipartisan cosponsors.

Senator Baldwin worked on this legislation after hearing the story of 16 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, and will need 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 treatments. Despite having comprehensive health insurance, the Abbotts were denied coverage for Aidan’s dental work and forced to pay out of pocket for his treatments. Although most health plans cover care for congenital anomalies, claims are routinely denied or delayed for any oral-related procedures due to an individuals’ disorder.

“Aidan’s story continues to inspire my work on this issue to guarantee that individuals born with congenital anomalies have access to the comprehensive health treatments and coverage they need,” 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 Ensuring Lasting Smiles Act has maintained strong bi-partisan support since its first introduction and the immense number of original cosponsors upon re-introduction in the 117th Congress shows continued support for this common-sense, life-changing legislation,” said Becky Abbott of Slinger, Wisconsin. “We have no doubt that our incredible bill leads, Senator Baldwin, Senator Ernst, Congresswoman Eshoo, and Congressman Ferguson, along with our family advocates and ELSA coalition will do all they can to move the Ensuring Lasting Smiles Act forward through this session of Congress. Our families and advocates look forward to the day when they no longer have to fight for coverage of medically necessary treatments and our children and loved ones receive the treatments they desperately need and deserve. It's time to get ELSA passed!”

“Young Iowans, like Alli Steele and many others, have been diagnosed with Ectodermal Dysplasia. When their families realized the procedures would cost thousands of dollars out of pocket because they weren’t covered by their health plans, they turned to elected officials for help. Their stories and struggles are the reason I’ve teamed up with Democrats and Republicans on this effort to ensure that all health plans cover medically-necessary services related to a patient’s congenital abnormality, including reconstructive surgeries and oral-related procedures,” said Senator Ernst.

“Too many children born with congenital anomalies are denied coverage despite the long-term harm of such conditions. These are children like Rosie, the daughter of a family in my district who has congenital cataracts. She requires contact lenses because glasses aren’t powerful enough, and without these lenses she is blind and will have no chance of ever developing normal vision,” said Rep. Eshoo. “The bipartisan Ensuring Lasting Smiles Act would cover these medically necessary treatment options and close the loopholes insurance companies use to avoid paying for these treatments and services. I’m proud to reintroduce this bill to help keep America’s children healthy and smiling.”

“As a practicing dentist for nearly 25 years, building better smiles was my career, and it continues to be a top priority of mine in Congress,” Rep. Ferguson said. “The Ensuring Lasting Smiles Act would require all private, individual health care plans to cover medically necessary dental services, including reconstructive surgeries that are a result of congenital anomalies or birth defects. This life-changing bill will give families the opportunity to save for their children’s futures by addressing a loophole that has long allowed insurance companies to routinely deny oral or dental claims for medically necessary treatments.”

About four percent of children in the U.S. are born with congenital anomalies or birth defects that affect the way they look, develop, or function, often for the rest of their lives. Many born with congenital anomalies suffer from severe oral defects (such as cleft lip or palate, hypodontia, enamel hypoplasia), skeletal defects (such as craniosynostosis), vision defects (such as congenital cataracts or aphakia), hearing defects (such as microtia), or other loss of bodily functions. Patients who do not receive timely, continuous care for their congenital anomalies face long-term physical and psychological injuries. Individuals who suffer from ED and other craniofacial anomalies can expect to incur significant out of pocket costs on reconstructive oral and dental procedures related to their disorder during their lifetime.

Most group and individual health plans include coverage for congenital anomalies and many states require insurers to provide coverage of any health services related to congenital anomalies or birth defects. Despite this, health plans systematically and routinely deny or delay claims and appeals for treatment of congenital anomalies by wrongfully categorizing certain treatments or body parts as cosmetic or not medically necessary. This is a common practice across the country and leaves families with the burden of paying for their child’s treatment or procedures that are necessary to restore their ability to function. The Ensuring Lasting Smiles Act would address these coverage denials and delays and ensure that children suffering from congenital anomalies or birth defects get the treatment they need and deserve.

Specifically, the Ensuring Lasting Smiles Act would:

  • Ensure that all group and individual health plans cover outpatient and inpatient items and services related to the diagnosis and treatment of a congenital anomaly or birth defect; 
  • Stipulate that such coverage include services and procedures that improve, repair, or restore function due to a congenital anomaly or birth defect, including treatment to any missing or abnormal body part that would otherwise be covered for any other injury or sickness. The bill makes clear that this includes adjunctive dental, orthodontic or prosthodontic support; and
  • Exclude cosmetic procedures or surgery

The Ensuring Lasting Smiles Act is supported by a broad coalition of national health care professional and patient advocacy organizations including the National Foundation for Ectodermal Dysplasias (NFED); American Association of Oral and Maxillofacial Surgeons (AAOMS); American Dental Association; Academy of General Dentistry; American Academy of Pediatric Dentistry; The Sturge-Weber Foundation; American Society for Dermatologic Surgery Association (ASDSA); The XLH Network, Inc.; American Academy of Neurology; Lymphedema Advocacy Group; American Institute of Dental Public Health; Lupus and Allied Diseases Association, Inc.; American Society of Plastic Surgeons; Noah's Hope - Hope4Bridget; Genetic Alliance; PXE International; American Association of Women Dentists; American Behcet’s Disease Association (ABDA); Usher 1F Collaborative; National Organization for Rare Disorders (NORD); International Pemphigus and Pemphigoid Foundation; Project Accessible Oral Health; FACES: The National Craniofacial Association; Children's Hospital of Wisconsin; Pathways for Rare and Orphan Studies (PROS); AmeriFace; American College of Surgeons; American Academy of Dermatology Association; Congenital Adrenal hyperplasia Research, Education & Support Foundation (CARES Foundation); Alstrom Syndrome International; Cure HHT; Usher Syndrome Coalition; MLD Foundation; K-T Support; RASopathies Network; American Academy of Opthamology; Soft Bones: The US Hypophosphatasia Foundation; American Association of Orthodontists; and Costello Syndrome Family Network.

"All of us at the National Foundation for Ectodermal Dysplasias are grateful to Senators Tammy Baldwin and Joni Ernst and Representatives Anna Eshoo and Drew Ferguson for reintroducing the Ensuring Lasting Smiles Act (ELSA) in the 117th Congress,” said Mary Fete, Executive Director, National Foundation for Ectodermal Dysplasias (NFED). “Together, we can build on the tremendous bi-partisan success the bill had last Congress in both the Senate and House. We are fueled by our passion to ensure that all individuals affected by congenital anomalies get the health insurance benefits they need for their necessary medical care and treatment. Our team of advocates have demonstrated in a short time that grassroots efforts and telling our stories can bring real change for our families' health. We are determined to get ELSA passed into law!"

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