Alaskans work with state's senate delegation to fix 'loopholes' in insurance coverage
The Brubaker and Watkins families both have children with a rare condition called ectodermal dysplasia.
It's a rare condition that effects someone's hair, skin and teeth.
For both children, it will mean years of very expensive dental work to replace adult teeth that don't exist. But, it's a condition that's not covered by private health insurance.
"The health insurance can deny coverage for dental work related to birth defects," Brian Brubaker, whose daughter Emily suffers from the condition. "If you get in a car accident it's covered if you need to have major reconstruction of your teeth or jaw, but if you're born that way, it's deemed to be cosmetic. But teeth are not cosmetic. You need them for eating and for speaking and for good nutrition, and there's this loophole in federal law that the insurance companies deem it cosmetic and don't have to cover it."
They took that message to Washington D.C. to ask the Alaska delegation for legislation that would change that.
"It just breaks my heart that it has to be such an ordeal because of the loopholes," said Laura Watkins, whose son Syrus also has the condition. "It shouldn't be like that, especially when it comes to kids."
Both children are part the four percent of kids in the United States born with a congenital anomaly — conditions that develop before birth that impact the functioning of those born with them often for life.
The Brubaker family met with both Sens. Lisa Murkowski and Dan Sullivan, which is how many Alaskans ask their delegation for help with issues that don't typically make the big headlines but that are impactful to their lives.
In February, Sen. Murkowski reintroduced bipartisan legislation to pass the "Ensuring Lasting Smiles Act."
The goal of the bill is to ensure health insurance coverage of treatments and procedures for individuals born with congenital anomalies or birth defects.
"Access to quality, affordable healthcare remains a top priority of mine. While many states require insurers to provide health coverage for services related to congenital anomalies or birth defects, health plans routinely deny certain claims. When a child is born with a congenital anomaly, they often face multiple surgical procedures and a long road of treatment and recovery which may be further complicated when patients, even those fortunate enough to have insurance, are denied coverage," Murkowski said. "With this legislation, we remove loopholes and close gaps in coverage, ensuring patients receive the medical attention they need and have actually paid for without worrying that an insurer will deny a claim."
This week, Sen. Sullivan joined as a co-sponsor of the legislation.
“I am pleased to support the Ensuring Lasting Smiles Act, which will help patients get the medical services they desperately need and provide families relief from worry and economic hardship,” Sen. Dan Sullivan said.
"They listened to us and were very receptive and we really were appreciative," Emily's mother Amber said.