Woman's last hope for rare cancer is out-of-province trial, but Quebec won't cover part of costs

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."

'Stuck in a technicality'

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.

"She's already on a treatment at the McGill University Health Centre but she's failing that treatment as we speak."

Although Alain's involvement in the experimental trial would cost about $75,000, that bill would be entirely covered by the research team in Calgary, says Saleh.

What they are asking RAMQ to cover is everything else, otherwise known as the standard of care — a cost he says Calgary will not foot because Alain is not a resident of Alberta.

With the RAMQ balking, Saleh says they're stuck because Alain is not allowed to pay for the care out of pocket.

"Our health-care system is universal, right? So wherever you are in the country, you should be covered for the standard. I would understand if they refuse to cover the experimental part, given that it's experimental, but this is not what we're asking," said Saleh.

"We're only asking that if she was here or she was anywhere in Canada and she needed some standard therapies or treatments that they cover only that section."

He says that if the treatment was offered in Quebec or if there was a clinical trial going on in the province, RAMQ would cover the costs and Alain would already be in the trial.

"She's actually stuck in a technicality," said Saleh.

"It's been a painstaking five months. We've been dealing with paperwork back and forth with Calgary, Quebec, as well as Health Canada. It's been around five months and she could have participated around four weeks ago."

Limited options for people with rare cancers: Uncharted territory for RAMQ

Health Minister Christian Dubé's office declined an interview on this topic and referred CBC to RAMQ, which also declined, saying it does not comment on individual cases.

In an emailed statement, the Canadian Cancer Society told CBC that there are often limited treatment options available for people with rare cancers — something which frequently places an "extra burden on the individual after a diagnosis."

"They may face financial burdens due to the cost of their treatment," read the statement. "In some instances, treatment costs may not be covered by the publicly funded system."

Saleh says this is uncharted territory for RAMQ and likely the first time it is dealing with this kind of case. If the decision is reversed, he is hopeful Alain's case could help other patients, despite her form of cancer being among the rarest types of sarcoma.

"This will not only benefit her," said Saleh.

"We're all doing our best to support her. We're trying to find other alternatives, but so far I don't see the light at the end of the tunnel."

"This is why I'm advocating for her."