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Life-changing drug Spinraza still not covered for many Canadians with spinal muscular atrophy

Click to play video 'Life-changing drug Spinraza not available to many Canadians' Life-changing drug Spinraza not available to many Canadians
WATCH: Alberta has become the fourth province to offer coverage for Spinraza, an expensive drug proven to stop the progression of spinal muscular atrophy (SMA). But many Canadians are still waiting.

For several hundred Canadians with spinal muscular atrophy (SMA), Spinraza is a drug that means the difference between life and a slow, debilitating death. But in many parts of Canada, the incredibly expensive drug is not covered by provincial drug plans.

Currently, four provinces will pay for the therapy: Quebec offers coverage for all SMA patients, while Alberta, Saskatchewan and Ontario are providing coverage for patients under the age of 18 (older patients are also able to apply for coverage on a case-by-case basis).

Eleven-year-old Evan Palmer says he broke down when he learned last month that the Alberta government will now cover his therapy.

READ MORE: Woman granted ‘miracle drug’ coverage after pleas to media, at Queen’s Park

“I cried,” Palmer said.

“It’s just so great to finally have something for me and my friends to get better.”

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SMA is a progressive disease that causes a person’s muscles to weaken over time. Without treatment, patients like Palmer eventually lose the ability to eat or even breath unassisted.

WATCH: (June 12, 2019) SMA drug funding approved, but some Ontario patients could be excluded

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SMA drug funding approved, but some Ontario patients could be excluded

When her son was diagnosed over a decade ago, Kira Leavitt Palmer was told nothing could be done.

“We were told: ‘We don’t know what this looks like; there is no cure. Enjoy him while you have him,'” she said.

With the discovery of Spinraza, everything changed. The drug, which is produced by pharmaceutical company Biogen, has been proven to stop the progression of SMA, and some patients even get stronger on the medication.

READ MORE: Drug could save hundreds of kids from profound disability – if they can pay for it

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The catch is that Spinraza costs hundreds of thousands of dollars a year. The first year of Spinraza treament, which is administered through a spinal tap, costs more than $700,000, with the cost of treatment in the following years hovering around $300,000.

Susi Vanderwyk, executive director of Cure SMA Canada, says she’s frustrated by how long it’s taking to get drug coverage approved across the country.

“My own daughter has the disease and is 22 years old and is not able to access treatment,” Vanderwyk said during an interview with Global News in Abbotsford, B.C.

“Because this is a progressive disease, our patients have been continually progressing and watching other patients in other jurisdictions improving their quality of life while we continue to decline.”

WATCH: (Oct. 2, 2018) NDP government to cover the drug Spinraza for use on B.C. patients

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NDP government to cover the drug Spinraza for use on BC patients

Provinces like British Columbia are still negotiating with the company that makes Spinraza on things like the drug’s price.

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University of Calgary health economist Fiona Clement says that when it comes to expensive drugs like Spinraza, provinces need to negotiate prices carefully.

“Pricing of drugs is very complex, and essentially, drug companies can charge whatever the market will bear,” said Clement.

“Something like a price tag of $750,000, it’s unrealistic for the provinces to be able to pay that.”

Vanderwyk, however, says that if other provinces were able to reach an agreement with the drug maker, the rest of Canada should follow suit so that all Canadian patients have equal access to a therapy that will change their lives.