New drug gives hope to Moose Jaw woman with rare disorder

A new drug has given hope to a Moose Jaw woman with a rare neuromuscular disorder, but it comes with a high price tag.

Shailyn Taylor is a student at Mount Royal University in Calgary with spinal muscular dystrophy or SMA. Her physical condition has deteriorated over the last 22 years, as the disease attacks her muscles.

“My councillor actually told me to start making funeral plans, so I could accept that that was coming,” Taylor said.

In late 2016 she received a call from the Families of SMA Organization, alerting her that a new drug called Spinraza that can drastically improve the condition of SMA patients would soon be available in Canada.

“I remember when I heard about it. They called me at school and I ran out crying. ‘It’s here! It’s finally here!’ We were waiting and praying for this,” said Shailyn’s mother Shaunna.

But the family soon learned that the new drug came with a catch. As one of the most expensive drugs in the world, Spinraza comes with a $60,000 per dose price tag.

“Finally after years of not having any treatment, we have one that’s shown a lot of success. But now it’s too pricey for families,” said Shailyn’s father Brett.

After Shailyn was denied coverage by their private health insurance for the drug, they went to the Government of Saskatchewan for subsidization. That claim was then denied, as the government stated that the drug is still under negotiation between the provincial and federal governments.

“We’re doing our best to successfully conclude the negotiations, based on the information that has been provided to us,” said Nick Doulias, director of pharmaceutical policy and appropriateness, from the Ministry of Health.

After both those claims were denied, the family received some help from a GoFundMe page that raised $60,000 for one dose of the drug. The recommended treatment of the drugs calls for five doses in the first year, totaling $300,000, with one additional dose for every year afterwards.

No matter the cost, the drug buys Taylor hope that she did not have before.

“I went from planning my funeral to planning my future, which has never been a possibility for me,” said Taylor.

Based on a report by Josh Diaz

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