"Mighty" Max Sych, a two-yera-old from Fairview, has been in needed of the gene replacement therapy drug (Photo supplied by the Sych family)

By Shaun Penner

Zolgensma

Zolgensma to be funded on case-by-case basis in Alberta

Jan 27, 2021 | 12:02 PM

Families of children suffering from spinal muscular atrophy (SMA) may now be eligible to receive funding on a case-by-case basis for gene replacement therapy treatment in Alberta, including for the pricey drug Zolgensma.

In an announcement Wednesday morning, Health Minister Tyler Shandro says the provincial government is working with Novartis Pharmaceuticals Canada Inc., the manufacturer of Zolgensma, to provide interim patient access to the drug.

This is the drug which is quite urgently needed by the family of Mighty Max Sych of Fairview, a two-year-old who suffers from the disease.

“Access to this treatment will mean a world of difference for these few brave children and their families,” said Shandro. “Alberta’s government recognizes the urgency families are experiencing in getting treatment for their children diagnosed with this disease and we are pleased to be able to provide interim funding to help them out.”

Shandro says Alberta children with SMA and who may become ineligible for the treatment while waiting for the final approval processes to be completed, will be considered for funding on a case-by-case basis.

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Prior to Wednesday’s announcement, the costs of the drug had not been covered by the province, and the drug itself was just approved for use in Canada back in December.

The drug could be administered in the United States, but at a cost of $2.8 million.

The Peace Region community, the family of Mighty Max, and many others across Alberta have stepped up in a big way to help raise the money needed for Max’s treatment. So far, a GoFundMe campaign has raised over $1.1 million, among the many other fundraising efforts undertaken by members of the community.

Zolgensma has been approved for interim access in Alberta. The province will continue working with the Canadian Agency for Drugs and Technologies in Health and the pan-Canadian Pharmaceutical Alliance to complete the standard drug review and negotiation processes, and to reach a long-term agreement for access to the drug for other children and families.

“Novartis is proud to share Alberta’s commitment to the SMA community,” said Andrea Marazzi, country head, Novartis Pharmaceuticals Canada.

“We feel privileged to be a partner with the province to provide access to Zolgensma during this interim period and address the urgent treatment needs of children affected by this devastating disease.”

SMA is a rare motor neuron disorder that can affect the muscles used for head and neck control, sitting, crawling, walking and swallowing.