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NDP MPP, patients with SMA call on Ontario to cover ‘miracle drug’ to treat rare disease

Ontario families are putting pressure on Health Minister Christine Elliott to fully fund life-altering drug for all people suffering from spinal muscular atrophy or SMA.

It’s been called a miracle drug that would help sufferers of a rare, debilitating disease reverse its degenerative effects on the body. But Spinraza also costs hundreds of thousands of dollars per year.

That is why patients with spinal muscular atrophy (SMA) and their families were at Queen’s Park on Monday, pleading with the provincial government for help to cover the cost of the life-saving medication.

“As a parent of children, I can’t imagine the frustration of having a child with an illness and watching that child slowly degenerate through this illness,” said NDP MPP Chris Glover, who hosted the press conference. “And having a drug that is available but not being able to afford the drug because each injection costs $125,000 — and in the first year, you need six injections.”

READ MORE: Ontario woman with rare disease forced to pay hundreds of thousands to cover ‘miracle drug’

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That is the reality of 21-year-old Tori Lacey, one of the two young women who joined Glover, along with her parents, at the press conference. The fourth-year student at Ryerson University has been diagnosed with Type 2 SMA — a disease that attacks the nervous system, causing difficulty breathing and walking, weakening muscle strength, and affecting fine motor skills, swallowing and eating.

In the last two years alone, Lacey has already lost 20 per cent of her function.

“At the present, I cannot feed myself, I cannot scratch my nose, and I cannot hug my loved ones,” said Lacey. “It hurts to see my loved ones take care of me 24/7.”

READ MORE: Quebec approves ‘life-changing’ treatment for patients with Type 2 and 3 spinal muscular atrophy

Lacey was thrilled when she learned of the drug Spinraza until she found out that her type of SMA wasn’t covered by health insurance in Ontario. Lacey, who sat down with Global News back in April, said she would need to take six doses of the pricey drug in the first year and four moving forward after that.

Spinraza was approved by Health Canada in 2017 and in October 2018, provinces announced they would cover the cost of the treatment for those with Type 1 SMA.

As for those with Type 2 and 3, it is up to each province to decide if it wants to cover the drug under its own provincial health plan. In December 2018, the Quebec government announced it would cover Spinraza, but Ontario does not cover the drug.

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Lacey’s parents, Tracy and Shawn, had to refinance their home and sell other assets — all to pay for the treatment, after having fundraised more than $1 million for SMA research.

WATCH: Miracle drug access denied for SMA patient. Tom Hayes reports.

Miracle drug access denied for SMA patient
Miracle drug access denied for SMA patient

That, Glover says, is unacceptable.

“Ontarians living with SMA should not have to suffer without treatment when there is a medication available that can help manage their condition,” Glover said at the conference. “Their loved ones should not be forced to choose between taking on a massive debt to pay for the life-saving medication … making things worse, the Ford government has been sitting on a recommendation to expand public coverage of Spinraza for months now.”

According to a release put out by the NDP, after Spinraza was approved for use in 2017, the Canadian Agency for Drugs and Technologies in Health put out recommendations that provinces provide public coverage of the drug for babies up to seven months old. Two years later, that recommendation was updated in a final report to include children up to the age of 12.

Two provinces took heed of those recommendations, with Quebec announcing full public coverage of the drug in December of 2018, while Saskatchewan announced it’s providing public coverage for people with SMA regardless of age, with some exceptions based on the severity of the condition.

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READ MORE: Families fighting for ‘life-changing’ treatment for children with spinal muscular atrophy

Last month, Ontario Health Minister Christine Elliott told Global News that more proof of effectiveness is needed for the province to make a decision whether to cover it or not.

“I know it’s very difficult for many families. I have heard from many people about this,” Elliott said. “This is such a new drug, Spinraza, that we hope that it will be effective for everyone.

“But it’s just part of the process that we need to follow in order to make sure that if the government is going to fund certain drugs for certain exceptional circumstances that it’s going to be effective.”

Elliott said at the time that she hopes funding for those suffering from SMA types 2 and 3 will be dealt with soon.

Lacey, who has seen friends from other provinces and countries improve while on Spinraza, she said she wants Elliott to know that her life is “worth it” too.

Tori Lacey as a baby
Tori Lacey as a baby Lacey family
Tori Lacey as a baby
Tori Lacey as a baby Lacey Family

“It hurts to have to fight for my life and for our government who doesn’t see the value in giving me access to a treatment — a treatment that will literally save my life and stop the progression of my disease in its tracks,” Lacey said at Monday’s press conference.

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Glover said he aims to pressure the provincial government into action.

“The reason that I’ve helped to organize this press conference is because I want to shame both the government and the pharmaceutical company to sit down and start negotiating to find a way to get this medication to the people that need it,” said Glover.

“I am urging this government to act immediately to help all Ontarians living with SMA access this life-saving medication.”

–With files from Jessica Patton and Felicia Parrillo

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