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Baby finally approved for life-saving drug, 2 months before deadline

1 month 1 week 5 days ago Monday, June 01 2020 Jun 1, 2020 June 01, 2020 7:15 PM June 01, 2020 in News
Source: WBRZ

BATON ROUGE - A family that's been fighting for access to a potentially life-saving drug received word that their access has been granted.

Axel Dennis was diagnosed with Spinal Muscular Atrophy Type 1 at five weeks old. SMA is a disease that affects muscle movement. In 2019, the FDA approved Zolgensma for children with SMA under the age of 2. The one-time infusion halts the disease in its tracks. While it's being praised as a potentially life-saving infusion, it's also been known as the most expensive drug in the world at more than $2 million for a single dose.

Axel's Louisiana Medicaid has refused to cover the cost twice, until last week.

"I was able to tell him you don't have to sleep in the hospital anymore," mom Andrea James said.

In a previous treatment denial letter, it said Axel did not meet certain criteria to receive the dose. James says it's because he has a trach tube, which is used to help expand Axel's lungs. The reason for his trach tube is unrelated to his SMA diagnosis.

After months of back and forth, lawyers, a State Fair hearing, and a judge's decision, it was up to the Louisiana Department of Health to reject, modify, or approve the decision. James heard the news Thursday that the treatment had been approved.

"I'm just excited to see what he can do," James said.

It's been a race against time, as Axel's 2nd birthday is July 26 and he'll be about 23 months old by the time he receives the infusion. Axel and his mom were in New Orleans Monday, at the Children's Hospital, receiving initial blood work.

While Axel's family fought for Zolgensma for more than a year, he was being treated with Spinraza. Spinraza, approved by the FDA in 2016, is administered every four months through spinal injection. Each time, Axel must go under anesthesia to receive the treatment. It can be traumatizing.

"The only thing I think of is just how much better his life is going to be," James said. "Even if it's the same results and or a little bit better, but we don't have to deal with anesthesia and spinal taps three times a year for the rest of his life"

James is looking forward to seeing her son smile again, an ability he lost months ago. With the result they finally received, James is telling others to continue their fight and not give up.

"You can't give up," she said. "It makes me sad when I do see parents give up because it's too much. It's not too much. It's not too hard. When it's for your own kid, it's not a fight at all it's just what you're supposed to do."

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