Man battling muscular dystrophy wins battle with insurance

February 09, 2017 07:46 PM

Anyone who has had to battle an insurance company over a medical claim knows it involves a lot of frustration and a lot of paperwork.

For Andrew Longwell, who has Duchenne Muscular Dystrophy, his perseverance has finally paid off.

Andrew wheeled into Strong with his nana on Thursday to get his first infusion of Exondys 51: A drug which could help preserve the muscle strength he still has left.

"Andrew is so advanced we are not expecting miracles, but to have good hand integrity," says Marlene Fumia, his grandmother. "it would be such a blessing, holding his phone, writing his name, controlling his own wheelchair -- huge."

As he broadcast on Facebook Live on the way to Strong, he admitted to friends: There is no guarantee. Exondys 51 is one of the most expensive drugs in our country -- an estimated $300,000 per patient per year. But the Longwells thought the biggest hurdle would be the FDA.

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Fumia says, "How naive of me, because I just thought if the FDA approved it and they had all the evidence necessary that the insurance companies would follow suit -- that was wrong."

She says Excellus denied them three times and when we asked the insurance company 'why,' officials responded that "consumers in New York State have the right to appeal a decision regarding a claim."

So the Longwells did that using the New York State external appeal process. When the paperwork came back in their favor last week, they were happy and mad.

Fumia: "I was angry with the amount of time it takes to make change."

Rebecca Leclair: "So what does Andrew's case tell you about fighting insurance companies?"

Fumia: "That it was worth the fight -- that it will show people not to take 'No.'"

Doctors couldn't finish the infusion Thursday, but Andrew is hopeful after surgery next month, he'll celebrate another victory.

There is something else for patients like Andrew to celebrate: The Neuromuscular Disease Center at Strong is starting another experimental trial for a drug called Essence which if approved would be just the second drug ever to treat Duchenne Muscular Dystrophy.


Rebecca Leclair

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