Baldwin, Ernst Lead Bipartisan Bill to Ensure Coverage for Children Born with Congenital Anomalies or Birth Defects

WASHINGTON, D.C. – Today, U.S. Senators Tammy Baldwin (D-WI) and Joni Ernst (R-IA) led a bipartisan group of their colleagues in re-introducing legislation to ensure health insurance covers 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 insurance plans cover medically necessary services related to a birth defect, including any serious dental and oral-related procedures that are necessary for the child’s health and overall function.

Senator Baldwin first introduced this legislation in 2018 after hearing the story of Aidan Abbott of Slinger, Wisconsin, who was born with Ectodermal Dysplasia (ED), a rare congenital disease. Aidan 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. 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.

“There is no reason that big insurance companies should be able to deny families like Aidan’s the care they need. For millions of Americans, medically necessary care for birth defects can cost thousands of dollars out of pocket, or for others, it is entirely out of reach because of the cost – despite having health insurance,” said Senator Baldwin. “I’m proud to work with Democrats and Republicans to put this care in reach so more Americans can lead healthy lives and more families can focus on caring for their loved ones, not figuring out how they will afford medically necessary care.”

“It's an honor to advocate alongside passionate patient and provider advocates who are united in a common goal to ensure individuals and children born with congenital anomalies receive the medically necessary treatments they deserve,” said Becky M. Abbott, MPH, from Slinger, Wisconsin and Co-Chair of the National Foundation for Ectodermal Dysplasias Family Advocacy Committee. “We are fortunate that this advocacy initiative is being led by extraordinary bill leads who not only understand the importance of passing the Ensuring Lasting Smiles Act (ELSA), but have and continue to make it a priority to move ELSA forward. We are grateful for every advocate and member of Congress who stand beside us and support the efforts to move this life-changing legislation across the finish line in the 119th Congress.”

“To support young Iowans like Alli Steele, who was born with Ectodermal Dysplasia, this bipartisan legislation will help Iowa families by ensuring that health plans cover medically necessary services related to patients’ congenital anomalies of the eyes, ears, teeth, mouth, or jaw,” said Senator Ernst.

About four percent of children in the U.S. are born with congenital anomalies that affect the way they look, develop, or function. Many born with congenital anomalies suffer from severe oral defects (such as cleft lip or palate, hypodontia, or enamel hypoplasia), 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 for treatments of congenital anomalies. 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 that leaves families with the burden of paying the full cost of their child's medically necessary treatments, despite having private health insurance. 

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 legislation 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 that primarily impacts the appearance or function of the eyes, ears, teeth, mouth, or jaw; 
• 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 the treating physician determines is medically necessary. 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 Academy of Pediatric Dentistry, American Dental Association, American Association of Oral and Maxillofacial Surgeons, Pathways for Rare and Orphan Solutions (PROS Foundation), Rare and Undiagnosed Network (RUN), American Institute of Dental Public Health, FACES: The National Craniofacial Association, Children's Wisconsin, Crane Dental Laboratory, Inc., American Cleft Palate Craniofacial Association, M-CM Network, American Academy of Ophthalmology, Ear Community, American College of Surgeons, Academy of General Dentistry, TMJ Association, American Association of Orthodontists, American Society of Plastic Surgeons, American Academy of Pediatrics, American Association for Pediatric Ophthalmology & Strabismus, and American Association for Dental, Oral, and Craniofacial Research.

In addition to Senators Baldwin and Ernst, the Ensuring Lasting Smiles Act is co-sponsored by Senators Amy Klobuchar (D-MN), Lisa Murkowski (R-AK), Ben Ray Lujan (D-NM), Thom Tillis (R-NC), Angus King (I-ME), Roger Marshall (R-KS), Jack Reed (D-RI), Chuck Grassley (R-IA), Richard Blumenthal (D-CT), Cory Booker (D-NJ), and Jeff Merkley (D-OR).

Companion legislation was introduced in the U.S. House by Representatives Kim Schrier, M.D. (D-WA-08) and Neal P. Dunn, M.D. (R-FL-02).

“Many families with children who are born with congenital anomalies face significant financial barriers to accessing the treatment their child needs. This treatment is not just cosmetic. These conditions can have long-term health consequences that can severely impact everyday life,” said Congressman Dunn. “This bipartisan and bicameral legislation will help alleviate the financial hardship that many families endure to get their children the vital care they need. I’m proud to lead this important initiative and would like to thank my colleagues for helping us put a smile on every child’s face.”

"For far too long, countless patients, including children, have been unable to access treatment for congenital anomalies such as ectodermal dysplasias and cleft lip and palate because their health insurance refused to cover care, leaving them either without treatment or burdened with thousands of dollars in medical expenses,” said Congresswoman Schrier. “This bill would tackle this issue head on by requiring private health insurance plans to cover medically necessary services for treating congenital anomalies and birth defects, thus allowing patients with these conditions to secure and afford the treatment they need.”

A one-pager on this legislation is available here. Full text of this legislation is available here.

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