Canada has one of the highest rates of multiple sclerosis in the world. But few drugs are designed to treat the most debilitating forms of the disease such as primary progressive multiple sclerosis.
A promising new intravenous medication has hit the market in the United States but there’s no word on if and when it will become available in Canada.
WATCH: MS patient urging Health Canada to approve new drug
“I just believe that the quicker Health Canada approves this many, many, many lives will be changed immediately,” Notre-Dame-de-Grace resident Joe Petrilli said.
Petrilli has been living with primary progressive multiple sclerosis or PPMS for several years. His last episode severely damaged his eyesight and he fears another relapse could leave him completely debilitated.
“I went from seeing normal to double vision in a blink of an eye,” Petrilli said. “What I’m afraid of if I have another MS event I might go blind and then I’m in real trouble now we’re talking serious life changes.”
Doctors have told the 63-year-old there’s no real treatment for his condition. The only medication he takes is a painkiller to help ease the long list of symptoms.
Simple tasks such as washing dishes can cause him excruciating pain, which is why he often has to rely on family and friends for help.
“It’s very unpredictable I think that’s probably his biggest struggle is he can’t commit to things and I think a lot of people it’s hard for them to understand that,” his son Allan Petrilli told Global News.
A new breakthrough drug called Ocrevus was recently approved by the United States’ Food and Drug Administration. Clinical studies have shown that it not only slows the decline of PPMS, it also cuts the number of relapses in half.
But it’s not yet available in Canada.
The FDA sped up the drug approval process and made it available to patients in March. But Health Canada won’t say how long it will take for Canadian patients to gain access to Ocrevus, only that the drug is currently under review.
“Timing for the review of drug submissions varies depending on the information provided by the manufacturer, as well as whether or not requests for additional information or clarification are needed. The Department does not speculate on the timing for individual drug submissions,” Health Canada’s senior media relations advisor Anna Maddison said.
The medication is costly. Two intravenous injections a year amount to more than $60,000 per patient and some worry that could be a deterrent.
“Obviously it’s a lot of money,” Petrilli said. “But then how much is a life worth, quality of life?”
His son is convinced that giving patients hope and a better quality of life is worth every penny.
“Not being able to take anything is the real struggle,” Allan Petrilli said. “I think if he knows that it won’t progress any further he can adapt to living with his current issues and be able to handle them a lot better.”
Petrilli wants nothing more than to see his grandchildren grow up someday while no longer having to struggle with every move, every waking minute. He’s hoping Health Canada will speed up the approval process before it’s too late.
“This is not who I am, I mean in 1982 and ’84 I ran marathons and now I have a hard time putting my socks on,” said Petrilli. “It’s a different life that you have to adapt to but that’s the curve that I was thrown so be it.”