Zolgensma funding announced by Province
South Peace News
Children with a rare genetic disorder including the Peace region’s own Mighty Max [Sych] have new hope for treatment after a provincial announcement they will be funded on a case-by-case basis.
Alberta Health Minister Tyler Shandro says the Province has reached an agreement with the manufacturer of Zolgensma, a gene therapy medication that can treat spinal muscular atrophy.
SMA is a genetic disorder that causes weakness and atrophy in the muscles needed for movement, affecting the ability to swallow, sit, crawl and walk.
Unlike other treatments that need to be given regularly, Zolgensma can actually fix the faulty gene that causes the disorder.
However, until now it cost $2.8 million, and families have been fundraising to try to afford the hefty price tag.
A GoFundMe for Fairview’s Max Sych or “Mighty Max” has already passed $1.1 million in just over six weeks.
The Province’s agreement, announced Jan. 27, will allow some families to access the treatment rather than missing the short window of time when it can be administered to young children.
“I’m very aware of the urgency of making this treatment available and pleased that we are able to provide this funding for children who may slip through the cracks while waiting for the final review and final approval processes,” Shandro says.
“Access to this treatment will mean a world of difference for these few brave children and their families.”
Doctors and specialists will be given information and families who are eligible will now be able to apply for the interim treatment. The Province is still working to complete the standard drug review and negotiation processes to reach a long-term agreement for access to the drug for other families.
In a Facebook video, Max’’s mother Bryarly Parker writes “I just want to put out there that we are so thankful to be in the community that we live in, be it Fairview, the Peace Country, all of Alberta, has really stepped up to help Max and help our family achieve something that we did not think that we would be able to achieve.”
She adds the announcement is thanks to everyone who has been supporting and helping advocate for Max and other children like him.