A 16-month-old boy has been denied a potential cure to a life-threatening condition, as the drug is too expensive.
According to reports, Louisiana Medicaid has refused to cover the cost of the drug that could save little Axel Dennis’ life.
The boy was diagnosed with Spinal Muscular Atrophy Type 1 at just five weeks old. SMA is a genetic disease that affects muscle growth and movement in its victims.
As per WBRZ, Axel’s mother says her son’s muscles simply aren’t receiving 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,” mom Andrea James said.
Back in January, Axel lost the ability to smile. The FDA approved the drug Zolgensma for children – known to have a marked effect on the condition – below the age of two suffering from SMA earlier this year.
The issue lies in the exorbitant cost of the medicine, which stands at more than $2 million for a single dose.
Thus far, Axel’s Louisiana Medicaid have refused to foot the bill.
James explained: “We’ve been denied twice and now we’re applying for the State Fair Hearing. I think that they just don’t want to pay the price.”
The denial letter claims Axel doesn’t meet certain criteria to receive the drug, placing this innocent little boy in a desperate race against time.
“The money’s been spent to prove that it’ll benefit these kids,” she said. “It will save their lives, as close to a cure as we’ve come and as what anything could be really. I say to the state, save his life, give him a chance to walk, give him a chance to earn his smile back.”
In eight months time, Axel turns two, after which the FDA will not approve the drug for him. He is currently administered a spinal injection of Spinraza every four months, though he is forced to undergo anaesthesia each time and it can often be traumatizing.
His family have set up a GoFundMe page and Facebook group to try and rally support for Axel, whose life could well be changed for the better if he is given Zolgensma.
It pains me to hear that a little boy might be missing out on a life-changing drug simply due to money.
Share this article far and wide and let’s help raise awareness of Axel’s plight and condition.