Woman's last hope for rare cancer is out-of-province trial, but Quebec won't cover part of costs
CBC
In an ideal world, Stéphanie Alain would already be in Calgary and part of an experimental treatment she's hoping will save her life.
Instead, the 31-year-old from Rouyn-Noranda, Que., is stuck at home with her four-year-old son, having to commute to Montreal for cancer treatment that her doctors say isn't working.
Last year, she was diagnosed with alveolar soft part sarcoma, a rare cancer that has since spread to her lungs.
Alain's only hope for a recovery lies in the clinical trial in Calgary. The doctors running the trial in Alberta say their funding will cover the cost of her treatment, but RAMQ, Quebec's health insurance board, won't cover any of the other expenses — standard procedures like scans and blood tests as well as possible adverse reactions associated with the experimental trial.
"It's the only treatment in the world that exists that could cure me," said Alain.
"I know I'll be able to beat this cancer. But since we've had the answer from RAMQ, which refuses to support us, it'll be more difficult. I'm scared now. I've just had my hope taken away from me."
In the letter submitted to CBC by Alain, the Régie de l'assurance maladie du Québec said after an evaluation, it cannot assume the costs associated with the treatment because it is experimental in nature.
Her oncologist, Dr. Ramy Saleh, the medical director of oncology research at the McGill University Health Centre (MUHC), called Alain to deliver the news.
"I was really disappointed. I was really sad. I was angry," said Alain. "I didn't understand what was going on."
"I'm not going to just let this happen," she said. "I am going to do everything I can to stay alive because I want to live."
Alain appealed the decision and right now her doctor, Saleh — one of a handful of sarcoma experts in Canada — says he is just trying to "buy her time."
Her oncologist says the trial, approved by Health Canada and run by the Foothills Medical Centre in Calgary, is Alain's best chance.
The trial has no control group receiving a placebo. Every participant gets the treatment, which consists of taking a patient's white blood cells and re-engineering them to fight the cancer before returning them to a patient's body, Saleh explained.
"Unfortunately there's no other treatment available for her," said Saleh.
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