Senate to consider legislation that would mandate insurance coverage for congenital anomalies

The Ensuring Lasting Smiles Act would require all private group and individual health plans to cover medically necessary services for any anomaly that requires medically necessary care for any body part that has lost bodily function, including severe oral and facial defects. Though coverage is usually included in health plans, families fighting for the legislation say claims are routinely denied for external anomalies because they might be considered cosmetic, according to the bill's advocates and co-sponsors.

"The idea that any of this is considered cosmetic and not medically necessary when it affects your fundamental ability to speak clearly, swallow -- this is something that's clearly connected with both health and quality of life," the Wisconsin Democrat told CNN earlier this month.

The legislation -- which had been introduced in the 115th and 116th Congresses, but never received a floor vote -- is the product of a years-long effort from the families of children with congenital anomalies, and in many cases, the children themselves.

"Passing measures like this is about improving people's lives," Baldwin said. "And in this case, led by these children and these young people who are living a civics lesson, basically."

'This is a pre-existing condition'

The struggle to define a congenital anomaly treatment as medically necessary is often seen in cases that affect the mouth and teeth, like ectodermal dysplasia.

With that specific genetic disorder, children might have deformities that include multiple missing teeth and problems with their sweat glands. But claims for treatment are often deemed cosmetic, families dealing with congenital anomaly treatment told CNN, forcing them to pick up the costs of multiple surgeries so their children can do even basic things.

The American Dental Association, which supports the ELSA bill, told CNN in a statement these anomalies can interfere with a child's ability to "breathe, speak and/or eat in a normal manner."

And as Dr. Dana Jackson, chair of the Department of Oral and Maxillofacial Surgery at Howard University Hospital, told CNN, "Sure, putting teeth in helps you look better, but it also is responsible for form and function."

"And it really impacts upon the developing of self-esteem and how they feel about themselves. And it's something that's life-long. Even when they become adults, they still have -- the problem doesn't go away," he said.

"So what we're trying to do is try to get the government and the federal government to understand that this is a pre-existing condition, and it's not something they're causing and not something that they're doing anything wrong."

'What this bill truly relied on was grassroots advocacy'

Each of the families dealing with congenital anomalies who spoke with CNN described a moment of shock when they realized their insurance wasn't going to cover all of the medical expenses.

"I was shocked because we have a very comprehensive health insurance policy," Kevin Koser, whose son Kannon has ectodermal dysplasia, told CNN.

"And when I did my research into the policy -- my policy states that it will provide coverages for the treatment of congenital anomalies. Then to find out from other families who also have similar policies say, 'Well, that doesn't matter.' Health insurance is finding a way to deny these medically necessary treatments. That's when I realized that this was a much bigger issue."

The message was echoed by Becky Abbott, who told CNN that her family's advocacy work began when they started to get insurance denials following her son Aidan's ectodermal dysplasia diagnosis.

"At first we met with our state representatives and my husband's employer to see why we were getting denials for this medically necessary work. They did not listen to us and they didn't help. So then we ended up packing our family up and driving out to DC to meet with our legislators to ask them to help us and write legislation," Abbott said.

That legislation would ultimately become the Ensuring Lasting Smiles Act, a name that Aidan coined, according to Baldwin.

"I think what this bill truly relied on was grassroots advocacy, not only for me, but from across the country in all 50 States," Koser said of the sprawling effort behind getting the legislation introduced in the Senate.

"I mean, we, we have really mobilized hundreds, if not thousands of Americans to share their personal story, just as I've shared Kannon's."

For Abbott, the bill now represents an opportunity for Congress to not just improve lives, but show they can still come together on important issues.

"I would say that this is their chance to show that legislators can work together. They can reach across the aisle on issues that are very important, that could significantly change the lives of so many different families and children across the United States," she said.

"And now that they have this opportunity to do it, I would encourage them to get on board so that there was no longer have to suffer and struggle with coverage issues."