An Ontario family says they are at an unimaginable crossroads – pay $40,000 a month for medication, or be faced with their loved ones’ death.
The family says a drug could prolong Ted Sewerynek’s life but it’s not funded in this province and time is running out.
“Well I guess I am at the last stages of my life,” said Sewerynek.
70-year-old Ted Sewerynek got home from a trip last year and wasn’t feeling like himself. It turns out he had something called cholangiocarcinoma a cancer that exists between the gallbladder and the liver in a bile duct.
Despite being given one year to live, his son Mathew says there was hope from doctors. The family was told there was a drug that could improve Sewerynek’s quality of life and prolong it too.
“Problem is it’s $40,000 a month…for every month for the rest of his life.”
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The drug is called pemigatinib – sold under the brand name pemazyre. Its an anti-cancer medication used for the treatment of bile duct cancer that’s available in Canada, but the cost is not covered in Ontario.
“It’s been proven to be very effective towards cholangiocarcinoma. It’s not curing it but it’s very effective and we are trying really hard to get this for Ted,” said Ted’s wife, and Mathew’s mother Rosanne Sewerynek.
“Its kind of the only thing that is left for me,” Sewerynek says.
Sewerynek has exhausted all other treatments and says his disease is progressing because he can’t afford the drug that doctors say could help him. He has made the difficult decision to apply for medical assistance in dying, in case the illness becomes unbearable.
“I have it in my pocket so to speak.”
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His son Mathew feels an array of emotions on the matter, saying “I feel angry. I feel frustrated. I feel sad.”
The family says the drug is covered in Quebec and on a case-by-case basis in Alberta.
CHCH News reached out to Ontario’s Ministry of Health that says while the drug is approved for sale in the country, the Canadian Drug Agency recommended against its funding citing that “pemazyre did not demonstrate better patient outcomes compared to existing treatments, nor did it significantly reduce morbidity or mortality related to the disease it targets.”
The family is currently in talks with the drug company to hopefully receive a compassionate discount, “trying to fight for any shred of hope we still have,” but say the medication should be covered in the province before its too late.