Last year, the world grieved when a 23-month-old baby boy died after he was held hostage by the British government against the wishes of his parents who may have been able to save his life. The denial of medical care to baby Alfie—which was being offered to him for free by doctors in Italy—happened, not out of some vile conspiracy to harm a child, but as a function of the British healthcare system. Now, a similar case is unfolding in the land of the free.
Axel Dennis is a 16-month old baby, whose life since birth has been an uphill battle. At five weeks old, Axel was diagnosed with Spinal Muscular Atrophy Type 1. Babies with SMA type 1 typically have generalized muscle weakness, a weak cry, and breathing distress. They often have difficulty swallowing and sucking and don’t reach the developmental milestone of being able to sit up unassisted. These babies have increased risk of aspiration and failure to thrive, and often times live particularly short lives.
“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,” Axel’s mother, Andrea James said, who told WBRZ that her son lost the ability to smile recently.
There is good news for baby Axel, however, and it comes in the form of a new drug approved by the FDA, called Zolgensma. Currently, Axel’s SMA is being treated with Spinraza which is an utterly painful and crippling process. Spinraza, approved by the FDA in 2016, is given every four months through spinal injection. Each time, Axel must go under anesthesia to receive the treatment. It can often be incredibly traumatizing and it doesn’t appear to be working.
On the other hand, Zolgensma is a one-time treatment and touted as a cure for SMA. Instead of being injected into the spine, it is administered through an IV in roughly one hour — one time. That’s it. No more spinal taps, anesthesia, or blood work every four months. Zolgensma quite literally has the potential to save baby Axel’s life — if it is given to him before age 2 — but this may not happen.
Like baby Alfie, the government is in control of Axel’s healthcare as the family is on Medicaid. But Louisiana Medicaid says they do not want to give baby Alex this life-saving medicine which costs upwards of $2 million.
“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.”
As WBRZ reports:
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.
“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.”
Despite Medicaid’s policy of covering all treatments for SMA that have been approved by the federal Food and Drug Administration, they have repeatedly denied baby Axel this medicine. Baby Axel and his family are now counting down the days before he’s no longer a candidate for the treatment.
As WBRZ reports, James and the rest of Axel’s family are hoping someone will listen and get him the best treatment available. A GoFundMe has been set up for Axel here. To learn more about Axel and SMA, visit his Facebook page.
Article posted with permission from Matt Agorist
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