BATON ROUGE - The most expensive drug in the world could be a possible cure for a 16-month-old boy.
Axel Dennis was diagnosed with Spinal Muscular Atrophy Type 1 at five weeks old. SMA is a genetic disease the affects muscle movement. Axel's mother, Andrea James, says her son's muscles aren't getting messages from his brain.
"We were told one to two years and bring him home and enjoy him the best we could, but there were no guarantees of his life span," James said.
In January, he lost his ability to smile.
Earlier this year, the FDA approved Zolgensma for children with SMA under the age of two. The infusion halts the disorder in its tracks and doesn't allow it to progress further. The single-dose drug has been praised by the SMA community but it's incredibly expensive at more than $2 million.
Axel's Louisiana Medicaid has refused to cover the cost.
"We've been denied twice and now we're applying for the State Fair Hearing," James said. "I think that they just don't want to pay the price."
In his treatment denial letter, it says Axel doesn't 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.
It's now a race against time. The family has eight months before Axel turns two. James has heard and seen what the drug can do and wishes it for everyone.
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