Photo supplied by Bowden Sych

By Shane Clausing

Mighty Max

Health Canada approval of Zolgensma comes as positive news for Fairview’s Mighty Max

Dec 16, 2020 | 5:27 PM

Fairview’s Mighty Max and his family received some positive news on December 16 after Health Canada officially approved the drug Zolgensma for use in the country.

Back in November, Max’s father Bowden started a GoFundMe account to help raise money for his son to get the drug.

Previously, it was only available in the United States and it could cost up to $2.8 million for Max to receive it.

Zolgensma is used to help children that are diagnosed with Spinal Muscular Atrophy, which is a rare neuromuscular disorder that results in the loss of motor neurons and progressive muscle wasting. The disease makes it tough for children to grow muscles as they get older.

“It was amazing news this morning, we were basically running out of time and options,” explained Bowden.

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A positive development with how the Canadian government will distribute Zolgensma is that it will distribute it by weight and not by age. If Max were to receive the drug in the United States, he would only be able to get it before he turns two. Max turns two in January.

“That also buys us a little bit more time,” said Bowden.

According to the FDA (Federal Drug Agency) in the United States, the maximum dose of Zolgensma a child can receive is 74.3 millilitres, that is if a child weighs between 29-30 pounds.

While the news regarding the drug is positive, Bowden says that his family is still facing a lot of questions on how they’ll be able to get their son the drug and if they can get it in Canada.

“All this means is that we can get a doctor to write a prescription for Zolgensma in Canada. Right now, it’s still not a publicly funded drug because it is so new. We don’t know what is coming down the pipeline, but as of right now, there is no provincial or federal funding in place for it.”

Bowden is hoping that his family can work out some sort of payment between the provincial and federal governments to get the treatment.

He adds that he’s remained in contact with MLA Todd Loewen, who has helped lead discussions with health officials in the province.

For now, Bowden and his family will continue to fundraise to purchase the drug for Max. As of December 16, the family has raised close to $500,000.

The family is hoping to raise the $2.8 million by January.