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Toronto-area pharmacist with rare disease pleads with Ontario for access to life-saving drug

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WATCH ABOVE: A Toronto-area pharmacist with a rare genetic disorder is pleading with the Ontario government for access to a potentially life-saving drug. As Caryn Lieberman reports, it is available in the province but not for everyone who needs it – Jul 28, 2020

Pharmacist Joseph Beshay is used to being busy at work but the COVID-19 pandemic has kept him mostly at home for health reasons.

“With the result of COVID-19 and a lot of other stressors … I haven’t been able to do the activities that I’m used to doing, conduct my business as I’ve been going about it, so that’s brought me to the point where I’m losing muscle function more so than I ever have,” he explained.

Beshay is one of a few hundred Canadians with Spinal Muscular Atrophy (SMA) Type 2, a rare genetic disease.

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“What it boils down to is that there is a gene that I have that’s nonfunctional,” he explained, adding: “It sort of helps motor neurons in our body to survive. These motor neurons will communicate with our muscles and tell our arms to go up or our legs to go up and as a result of not having this gene, I have progressive muscle weakness that gets worse as I get older.”

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Beshay never expected there would be a cure but there is a life-saving drug that could help.

What Spinraza does is that it will stop the progression of my condition. It will allow me to keep the functions that I have currently and I’m able to maintain my life as I currently have it. That’s all I really ask,” he said.

Spinraza is covered in nearly 40 countries around the world with no caps on ages or types.

“The number of barriers that I’ve had in order to access this drug has just been insurmountable,” said Beshay.

Quebec offers coverage for all SMA patients, while Ontario is providing coverage for patients under the age of 18.

Older SMA patients are able to apply for coverage on a case-by-case basis.

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Beshay, who is 27, said he has reached out repeatedly to the government and has received no answers.

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I have a very broad medical background. I’ve researched all the clinical trials with regards to Spinraza. I’ve looked at that the specific points of clinical efficacy that the government requires in order to fund it… I’d just like to know why he or she feels that they value one life over another,” he said.

Beshay is losing hope that he will ever access the drug.

“Honestly, the only logical conclusion I can come to is that they’re probably just waiting for me to die,” he said. “The fact that they’re just continuing to make me wait and wait and not providing any clear insight into what exactly it is they’re looking for … it’s just frustrating.”

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Life-changing drug Spinraza not available to many Canadians – Jul 4, 2019

In a statement to Global News, a spokesperson for the Minister of Health, said: “The Canadian Agency for Drugs and Technologies in Health (CADTH) reviews and makes recommendations for all drugs, including Spinraza (nusinersen), following a thorough, evidence-informed review process. While funding is currently being provided for children with SMA, there is a lack of data to support the clinical benefits of Spinraza in adults with SMA.”

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The spokesperson added: “At this time, CADTH is evaluating the evidence in the adult population at a national level and Ontario is awaiting the outcome of this review.”

Beshay cannot afford to wait.

“It might seem minor to some people just lifting your hand up in order to bring food to your mouth or typing on a keyboard but these are things that I rely on to live my life daily,” he explained.

Beshay said he went into health care because he felt a “deep sense of pride in our Canadian health-care system.”

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With the many struggles he has had to endure in the past, and the barriers he now faces to access a “miracle drug”, he questions the health-care system.

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“I just I had this sense that I wanted to help people … and frankly, I think I’ve done everything in my power to live through that goal but I’ve just gotten to a point where that hope that I once had, that pride that I once had in the Canadian health care system is gone. You just feel like you’re in a hole that you don’t know the way out of. And you don’t have any answers. You don’t hear from anyone. It is very difficult.”

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