In a super world, Stéphanie Alain would already be in Calgary and a part of an experimental therapy she’s hoping will save her life.
As an alternative, the 31-year-old from Rouyn-Noranda, Que., is caught at dwelling together with her four-year-old son, having to commute to Montreal for most cancers therapy that her docs say isn’t working.
Final yr, she was recognized with alveolar comfortable half sarcoma, a uncommon most cancers that has since unfold to her lungs.
Alain’s solely hope for a restoration lies within the scientific trial in Calgary. The docs operating the trial in Alberta say their funding will cowl the price of her therapy, however RAMQ, Quebec’s medical health insurance board, gained’t cowl any of the opposite bills — customary procedures like scans and blood assessments in addition to doable opposed reactions related to the experimental trial.
“It’s the one therapy on the earth that exists that might remedy me,” stated Alain.
“I do know I’ll have the ability to beat this most cancers. However since we’ve had the reply from RAMQ, which refuses to help us, it’ll be harder. I’m scared now. I’ve simply had my hope taken away from me.”
Within the letter submitted to CBC by Alain, the Régie de l’assurance maladie du Québec stated after an analysis, it can’t assume the prices related to the therapy as a result of it’s experimental in nature.
Her oncologist, Dr. Ramy Saleh, the medical director of oncology analysis on the McGill College Well being Centre (MUHC), known as Alain to ship the information.
“I used to be actually disenchanted. I used to be actually unhappy. I used to be indignant,” stated Alain. “I didn’t perceive what was occurring.”
“I’m not going to simply let this occur,” she stated. “I’m going to do every little thing I can to remain alive as a result of I need to reside.”
Alain appealed the choice and proper now her physician, Saleh — one in every of a handful of sarcoma specialists in Canada — says he’s simply attempting to “purchase her time.”
‘Caught in a technicality’
Her oncologist says the trial, permitted by Well being Canada and run by the Foothills Medical Centre in Calgary, is Alain’s finest likelihood.
The trial has no management group receiving a placebo. Each participant will get the therapy, which consists of taking a affected person’s white blood cells and re-engineering them to combat the most cancers earlier than returning them to a affected person’s physique, Saleh defined.
“Sadly there’s no different therapy out there for her,” stated Saleh.
“She’s already on a therapy on the McGill College Well being Centre however she’s failing that therapy as we communicate.”
Though Alain’s involvement within the experimental trial would price about $75,000, that invoice could be completely lined by the analysis crew in Calgary, says Saleh.
What they’re asking RAMQ to cowl is every little thing else, in any other case often called the usual of care — a price he says Calgary won’t foot as a result of Alain is just not a resident of Alberta.
With the RAMQ balking, Saleh says they’re caught as a result of Alain is just not allowed to pay for the care out of pocket.
“Our health-care system is common, proper? So wherever you might be within the nation, you need to be lined for the usual. I might perceive in the event that they refuse to cowl the experimental half, provided that it’s experimental, however this isn’t what we’re asking,” stated Saleh.
“We’re solely asking that if she was right here or she was wherever in Canada and he or she wanted some customary therapies or remedies that they cowl solely that part.”
He says that if the therapy was provided in Quebec or if there was a scientific trial occurring within the province, RAMQ would cowl the prices and Alain would already be within the trial.
“She’s really caught in a technicality,” stated Saleh.
“It’s been a painstaking 5 months. We’ve been coping with paperwork forwards and backwards with Calgary, Quebec, in addition to Well being Canada. It’s been round 5 months and he or she might have participated round 4 weeks in the past.”
Quebec AM9:07Quebec’s medical health insurance board refuses to pay for prices associated to an experimental most cancers therapy in Calgary
A 31-year-old Quebec lady with a uncommon most cancers is combating for her life. She’s asking the province’s medical health insurance board to assist pay for the prices associated to an experimental therapy in Alberta. However thus far they’ve refused. Her oncologist, Dr. Ramy Saleh, speaks with Julia Caron about why he too is lobbying for his affected person.
Restricted choices for individuals with uncommon cancers: Uncharted territory for RAMQ
Well being Minister Christian Dubé’s workplace declined an interview on this matter and referred CBC to RAMQ, which additionally declined, saying it doesn’t touch upon particular person instances.
In an emailed assertion, the Canadian Most cancers Society instructed CBC that there are sometimes restricted therapy choices out there for individuals with uncommon cancers — one thing which regularly locations an “further burden on the person after a prognosis.”
“They might face monetary burdens because of the price of their therapy,” learn the assertion. “In some situations, therapy prices is probably not lined by the publicly funded system.”
Saleh says that is uncharted territory for RAMQ and sure the primary time it’s coping with this sort of case. If the choice is reversed, he’s hopeful Alain’s case might assist different sufferers, regardless of her type of most cancers being among the many rarest forms of sarcoma.
“This won’t solely profit her,” stated Saleh.
“We’re all doing our greatest to help her. We’re looking for different alternate options, however thus far I don’t see the sunshine on the finish of the tunnel.”
“That is why I’m advocating for her.”