First Cleft Out 5K Aims to Shine the Light on Inequity

Birth defects, in most cases, are random and treatable – and heartbreaking. No one – absolutely no one – wants to see children suffer. Advances in medicine and technology have tackled birth defects, creating treatments to fix problems, limit suffering, and allow children born with them to grow up healthy and strong. And in most cases, insurance covers the greatest costs.

Except when it doesn’t.

“These kids are left out,” says Dr. Rick Kapitan, who leads the only team of cleft lip & palate surgeons and specialists in the region.

From birth, children with cleft lips and palates encounter problems with eating, speaking, and even their ears, in additional to the social and emotional issues they suffer from “looking different.” It is a difficult burden for them and their families, and takes multiple surgeries and therapy over their first 18 years of life to manage. Costs reach $50-70,000 before all is done. And because the treatment is combination of medical, dental, speech, and other therapies, much of it is NOT covered by standard insurance.

Dr. Kapitan launched the Cleft Out Foundation in 2017 to address this inequity, and the unfair burden it places on families.

“What motivated me is that if this were a heart condition or spine condition, no one would question the need for these surgeries,” says Dr. Kapitan. “Only if insurance companies are required to cover these birth defects, will they do it. But the foundation can help offset the costs of care.”

Dr. Kapitan has visited Washington and lobbied Congress about the need for insurance coverage. He’s found that even though agreement is strong among lawmakers, bills get lost in committee and don’t make it to the floor. It is frustrating at best, and will take a long-term commitment and more attention to solve. He continues this advocacy as he takes care of his patients in Charlotte, as about 1 in 700 children a year in the U.S. are born with this particular birth defect.

He’s trying to get attention for the problem in a much wider audience.

“What other birth defect would be treated like this?” he asks incredulously. “That’s my mission — to raise money and talk about it.”

On November 2nd, Dr. Kapitan and supporters are literally taking the “first steps” for a new fundraiser and awareness campaign about cleft lips and palates. The Cleft Out Foundation 5k will run a loop from Novant Health Presbyterian Hospital through Elizabeth and back to raise money. The proceeds will supplement a gala held each spring to support the foundation’s work.

Dr. Kapitan keeps an arm’s length from the fundraising because his focus is on treating children. But he’s passionate about educating people that cleft lips and palates aren’t just something that happens in “third world” countries — that it is a birth defect that happens here, and is treated here. The money raised by the foundation, he adds, also stays here to help children from around the region who come to Charlotte for help.

He’s fired up and wants to help. You can, too, by taking a run through Elizabeth this Saturday morning. The air should be crisp, and the trees will be blazing in their fall colors. And children will get the help their families need to grow up healthy and strong, living as normal lives as possible.

You can sign up here:

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