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From nearly $2 million a dose to nothing out-of-pocket for some sick kids

Connecticut Children's partnered with Cigna to make expensive gene therapies more affordable for patients and payers.

HARTFORD, Conn. — Most parents would do anything for their sick children, but will or want has nothing to do with it when the treatment costs $1.9 million. That was the case for kids who have pediatric spinal muscle atrophy, and need a one-time dose of a gene therapy called Zolgensma. 

Two times in the past, Connecticut Children’s Medical Center has stepped in to get kids that therapy.

“There was no way we were denying the care,” said Bridgett Feagin, Connecticut Children’s Medical Center’s Chief Financial Officer, “our families are very happy and they did well. Both patients are doing much better.”

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However, even for a hospital, a sudden $1.9 million treatment can be challenging to absorb. Thankfully for Connecticut Children’s, and families of children with the disease, another Connecticut company, Bloomfield-based insurer Cigna, has stepped in to make any future treatments more affordable.

“It was out there, the patient needed this, and then Cigna was one of the ones that said, ‘Hey, we’ll partner with you and what do we need to do’", Feagin said.  

Connecticut Children's became the first hospital in the state to sign up for Cigna’s Embarc Benefit Protection Program, which aims to cut the costs of expensive gene therapies and allow covered families to pay virtually nothing out of pocket.

“It takes stress off the families from having to worry about making difficult decisions – ‘do we go after this treatment or not because of the cost?’ ”, Feagin said.  

So how does a nearly $2 million treatment get its price whittled down? Feagan said it starts with the federal government.

“So, it starts with our lawmakers, we get 340b pricing so we receive reduced pricing for our pharmaceuticals,” she said.  

340b is a federal program that requires drug-makers who want to be a part of the Medicare and Medicaid program to provide expensive medications to certain groups at a steep discount.

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From there, Cigna’s program allows Connecticut Children’s to pay a per-member, recurring fee to be covered, which spreads out the remaining expense over time, making it easier to plan for.

“It would bring down the cost for Cigna as well, because, typically, when we contract with Cigna, we contract and say ‘Hey, this medication costs $2 million, you know, can you pay 50 percent of this?’, so now, by utilizing this, Cigna will pay less so it’s a win-win,” Feagin said.

Right now, the program only covers Zolgensma and a therapy called Luxturna, which treats an inherited retinal disease, but more treatments, and hospitals, may be added to the program over time.

Tim Lammers is an anchor at FOX61 News. He can be reached at Tlammers@fox61.com. Follow him on Facebook, Twitter, and Instagram.

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