Susan Wilham and her husband have had to spend hours on the phone with their insurer, fork out hundreds of dollars for medical services insurance wouldn’t pay and worry whether future oral surgeries for their 16-year-old son will be covered at all.
The struggles these Springfield residents have gone through are common for families dealing with the often frustrating task of paying for multiple surgeries to deal with long-term effects of cleft lip and cleft palate, both congenital conditions.
“We’re not going for a Colgate smile,” Wilham said of her efforts to help her son, BeiLee Wilham, whom she adopted from China when he was 2. “All we want is for my child to have a functioning jaw.”
A bill pending in the Illinois General Assembly would, for the first time, mandate insurance coverage for “medically necessary care and treatment” for cleft lip and cleft palate until at least age 19.
House Bill 4349 passed the Illinois House with no dissenting votes on March 3 and is scheduled for a Senate committee vote this week.
“This will give a blueprint of what is covered,” said Dave Marsh, director of governmental relations for the Illinois State Dental Society.
The bill, if passed by both chambers and signed into law by Gov. JB Pritzker, would take effect Jan. 1, 2024. The legislation would apply to “fully funded” health plans and the self-funded health plans for state of Illinois employees.
However, other self-funded plans would be exempt from the mandate.
Marsh said efforts are underway in Congress to mandate coverage of treatment related to cleft lip and palate for other self-funded plans, which represent about 70% of all private insurance plans. Those plans currently are governed by the federal Employee Retirement Income Security Act of 1974, or ERISA.
Cleft lip and cleft palate occur when a baby’s lip and mouth don’t form properly during pregnancy, resulting in an opening in the upper lip and an opening in the roof of the mouth.
About one in every 1,600 to 1,700 babies in the United States is born with a cleft lip and cleft palate, or just a cleft palate, while one in every 2,800 babies is born with just a cleft lip, according to the Centers for Disease Control and Prevention.
The Illinois dental society says one in every 33 babies in the United States is born with some sort of “congenital anomaly” or birth defect that affects the way they look, develop or function.
Health insurance commonly covers initial surgery and treatments for cleft lip and cleft palate for babies, Marsh said.
But he said most people with the conditions require multiple oral surgeries to remove teeth, realign the jaw and other procedures to deal with the long-term ramifications – some surgeries are needed in their late teens and into their 20s – to adjust the palate, avoid jaw pain and promote proper chewing.
It’s after the initial surgery that medical plans have been known to label the procedures cosmetic and deny reimbursement, Marsh said.
When the procedures aren’t covered, families may have to pay tens of thousands of dollars out of pocket, he said.
Some families impoverish themselves so they can get the surgeries covered through Medicaid, he said, while others go through stressful, drawn-out appeals within an insurer’s administrative channels to get financial relief.
The delays in care that result can lead to the failure of corrective surgeries and the need for repeat surgeries, he said.
The dental society has worked with the insurance industry for three years to come up with a legislative proposal that the industry agreed not to oppose, Marsh said.
The bill says “‘medically necessary care and treatment’ to address congenital anomalies associated with a cleft lip, or palate, or both,” would include “reconstructive services and procedures necessary to improve and restore and maintain vital functions.”
Also covered would be prosthetic treatments such as “obdurators,” speech appliances, orthodontic treatment and management, prosthodontic treatment and management and otolaryngology treatment.
The bill wouldn’t apply to insurance plans that only cover dental care.
State Sen. Laura Fine, D-Glenview, said she is confident the Senate will pass the bill and send it to the governor’s desk for his signature.
“To lead a healthy life, it’s something that needs to be addressed,” Fine said. “It saves a ton of money down the line.”
Susan Wilham, an attorney for a state agency – the Office of the State Appellate Defender – said she and her husband, a retired lawyer, found the bureaucratic hoops they had to jump through with their Health Alliance plan daunting at times.
She and her husband occasionally had to pay for services out of pocket for their son, but she said most of his procedures eventually were covered.
Wilham, who has testified in favor of the bill at legislative hearings, said she wonders how other families without the time or professional expertise have coped with the financial and bureaucratic challenges.
“It’s just a frustrating process of getting everything covered,” Wilham said.
In the past, doctors have told her that BeiLee needs to have all of his surgeries and procedures by age 18 or they won’t be covered by the family’s health plan.
Having another year – until age 19, as the bill provides – would help, but Wilham said her son still may need more surgeries in his 20s, when the growth of bones in his mouth and jaw are complete.
If HB 4349 is passed and enacted, data could be collected on its impact to push for follow-up legislation requiring insurance coverage for cleft lip and palate until a person reaches his or her mid-20s, Marsh said.
It would be easier to justify to the legislature once routine coverage of the conditions becomes the standard of care, he said. “It becomes more defensible and more based on facts.”
Dean Olsen is a senior staff writer with Illinois Times. He can be reached at dolsen@illinoistimes.com or 217-679-7810.
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