World Birth Defects Day, which was observed on March 3, unites organizations that care for children with congenital anomalies. As board-certified plastic surgeons and members of the American Society of Plastic Surgeons, my colleagues and I are on the front lines of these efforts — caring for more than 30,000 patients each year.
Creating awareness about congenital anomalies, the treatments required and how patients thrive in our care is particularly relevant this year, as members of Congress have before them the Ensuring Lasting Smiles Act (S. 560/H.R. 1379). This is a bill that will ensure coverage for medically necessary services that repair a child’s form and function.
Congenital anomalies can restrict a child’s ability to breathe, eat, hear and speak with the ease and comfort many of us take for granted. In addition, they often require early intervention with multistage procedures to approximate a normal appearance and set the proper path for the child’s development. On average, children with congenital anomalies can expect anywhere from three to five surgical procedures before normalcy and function are achieved.
Unfortunately, while many private health insurance companies cover the preliminary procedures, they routinely deny or delay follow-up or corrective procedures by claiming that these are cosmetic in nature — which fails to recognize the medical conditions of these patients.
Delays in medically necessary care can negatively impact a child’s developmental milestones and lead to long-term physical and psychological injuries. Coverage denials of a child’s reconstructive surgery can result in families being forced to resort to Medicaid, the Children’s Health Insurance Program or other safety-net programs instead.
I see the challenges and long-term effects of denials or delays in coverage. That’s why I’m standing with colleagues and thousands of young patients in urging Congress to pass the Ensuring Lasting Smiles Act. It will provide greater access to care for patients with congenital anomalies.
In 2018, the American Society of Plastic Surgeons honored Peter Dankelson, a high-school student, with its Patients of Courage: Triumph Over Adversity award — an honor that recognizes patients whose lives were restored through reconstructive plastic surgery and whose charitable actions influence the lives around them.
While Peter will one day be recognized as one of rock and roll’s greatest guitar aficionados, today he travels the country as an inspirational speaker — engaging with children to help them learn about craniofacial anomalies and how to choose kindness and acceptance.
Born with Goldenhar syndrome, Peter has undergone 30 surgeries in 18 years. All of Peter’s surgeries have been to improve his ability to breathe, eat, hear and see. His largest reconstructive surgery involved placing a custom TMJ implant on his left side, grafting bone from his skull on the right side and moving both the maxilla and mandible (jawbone) forward to enlarge his upper airway. The reconstruction also necessitated a second round of orthodontic treatment.
Even with private insurance, Peter’s out-of-pocket expenses exceeded $100,000 due to high deductibles and co-pays, no dental coverage and non-covered needs such as glasses, hearing aids and prosthetics. Peter is missing his left ear and cannot wear contacts due to cysts in his eyes. An ear prosthesis is needed to retain his glasses. Peter would like to have genioplasty (or chin augmentation) to complete his jaw reconstruction, but the surgery is considered cosmetic and, therefore, not covered.
The medical community is highlighting Peter’s story to show that the body’s form and function directly impact one’s quality of life. Now Congress can support patients like Peter, too, and the tens of thousands of children like him. Their conditions are not cosmetic. They are not superficial.
Children born with a congenital anomaly urgently need our policymakers to support the Ensuring Lasting Smiles Act. This legislation presents a critical opportunity for Congress to help address congenital anomalies and ensure appropriate access to care. In recognition of World Birth Defects Day, now is the time for Congress to act.
Lynn Jeffers, MD, MBA, FACS, is president of the American Society of Plastic Surgeons and a private-practice surgeon based in Ventura County, Calif.
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