Berks County mother fights insurance companies to cover $2 million gene therapy drug for son

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    WERNERSVILLE, PA (WPMT) — A Berks County mother is battling with insurance companies to get her son the treatment he needs. Doctors have prescribed the toddler the most expensive drug in the world. Yet, his insurance companies deny coverage.

“What is my child’s life worth to you,” asked Jacqueline Brewer, of Berks County.

Brewer has been in a fight with her almost two-year-old son John’s insurance companies for nine months.

“We’re not giving up,” said Brewer.

John was a happy, healthy baby for the first six months of his life.

“He was drinking from a bottle, he was nursing, he was great until he picked up a viral infection,” said Brewer. “it was just a simple cold.”

A cold that took a turn for the worse very quickly, appearing to trigger something even worse in John.

“Being in the ICU and being intubated and the doctors coming in and saying we’re going to do more tests and more tests and more tests and there’s still nothing coming up,” said Brewer. “And then they said they’d like to do a genetic panel.”

The genetic panel revealed John has spinal muscular atrophy, also known as SMA. It’s a muscle wasting disease caused by a mutated chromosome gene.

“It goes on and on and on until he basically can’t move,” said Brewer. “He wouldn’t be able to move his tongue. His diaphragm would no longer work. And it’s terrifying.”

John’s been receiving a drug called Spinraza every four months, it helps build the proteins his body needs.

“It’s a little much, it takes a toll on him,” said Brewer. “He’s getting a stronger. Now, he’s able to hold his head up a little bit.”

Spinraza has a price tag of more than $100,000 per injection and is covered by John’s insurance. But, since May of 2019, there’s something new on the market.

“Now there’s Zolgensma. That’s the one we need and that would stop the regression,” said Brewer.

Zolgensma is the most expensive drug in the world, with a $2.1 million price tag, but John would only need to receive it once. The one-time treatment is actually less expensive than receiving Spinraza for five years.

“It would stop where he’s at,” said Brewer. “He would never get any worse and that’s what we need.”

Yet, insurance companies Aetna and Ameri-Health have continuously denied coverage of the drug.

“Every doctor he comes across is saying it’s medically necessary for this child to have it but they’re [insurance companies] saying no,” said Brewer.

Brewer has continued to receive denials letters from John’s insurance companies all saying the same thing: “The request for Zolgensma was denied completely because we are not able to establish medical necessity.

“They’re saying it’s not medically necessary because he’s already being supported,” said Brewer. “He’s already on a ventilator and the Spinraza injections are enough.”

But, Brewer says other children with advanced stages of SMA with other insurance providers have been approved for Zolgensma.

Time is also running out for John to receive Zolgensma. The FDA only approved it for children under two-years-old. John turns to March 24th.

“It’s terrifying because what if they say no and don’t budge and he’s gonna turn two and they’re not going to budge,” said Brewer. “But, I’m still going to call everyday, his doctors are still calling everyday, they will do everything they can. We’re not going to give up. Even if he turns 2, I’m not going to give up.”

Brewer says she will continue to fight John’s insurance companies every single day, and if he doesn’t receive the drug before he turns two, she’ll look for clinical trials to somehow get John this drug.

“I need to know what this innocent child’s life is worth,” said Brewer

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