Terminal brain cancer patient wants Quebec to cover cost of treatment cap

Patients living with glioblastoma, a rare cancer of the brain are calling on the province to provide coverage for Novocure’s Optune cap.

Patients living with glioblastoma, a rare cancer of the brain are calling on the province to provide coverage for a new treatment that could prolong their lives. But so far, the government is refusing, and the cost of the treatment is far beyond what most people can afford.

A year ago, Mathieu Bolduc was an active 27-year-old, but now he strives to keep his days as normal as possible.

He says everything changed while bouldering with friends.

“I felt suddenly really dizzy and couldn’t get my balance. I couldn’t really walk properly and had a lot of trouble talking,” he recalls.

His symptoms worsened overnight and Bolduc ended up in the hospital.

“They tell me it was a brain hemorrhage caused by my grade four tumor,” he says.

“Basically, my life completely tumbled overnight.”

The devastating diagnosis was glioblastoma, a rare cancer affected about 150 new patients in Quebec every year.

Bolduc underwent brain surgery, radiation and chemo. His medical team also recommended a new treatment that has shown promising results.

Novocure’s Optune is a device worn on the head for most of the day, ideally for two years. It uses electrical fields to attack cancer cells.

Survival rate more than doubled

Dr. David Roberge, a radiation oncologist at the CHUM, is one of the physicians who studied Optune’s effectiveness in a study involving hospitals in 14 countries, including Canada.

“Of the hundreds of patients on the trial, the ones that had the treatment live longer on average and the ones that didn’t have the treatment,” he says.

He says the survival rate five years after diagnosis more than doubled with the device.

“The study found the chances of survival five years after diagnosis are 5 per cent without the device and 13 per cent with it,” he says, adding it’s the only new treatment for Glioblastoma that has shown positive results in roughly 20 years.

However, it costs up to $27,000 per month – and so far, Quebec has refused to cover it through RAMQ.

“I mean, it made me feel hopeful until I realized that I couldn’t afford it,” says Bolduc.

A situation that frustrates cancer doctors like Roberge.

“If I don’t tell you about it, I’m not doing my job. But if I tell you about it and then you feel like you have to mortgage your house and maybe get it, or you can’t get it, and you live with the frustration of knowing there is something out there that you can’t get,” he says.

“It puts people in a difficult situation.”

No coverage from Quebec

Optune was approved by Health Canada in 2022. Quebec’s health institute evaluated the treatment in 2023, but did not recommend coverage in part because of the high cost and questions over the ability to adequately monitor patients using the device throughout the province.

Dr. Roberge says he doesn’t understand why the health ministry hasn’t tried to negotiate the price with Novocure.

The Health Ministry also says there are uncertainties when it comes to the ability to use the helmet in a health care context.

“Some of the prerequisites for public coverage have not yet been met,” says a spokesperson for the ministry.

“However, the [ministry] remains on the lookout for new data and information about the Optune device that could support a re-evaluation of this technology in the future.”

It added that consideration is being given to finding solutions for patients suffering from glioblastoma.

Bolduc also wants Quebec to cover Optune, but he isn’t waiting.

His family members are pooling their savings and more than $50,000 they crowdsourced to pay for it.

“People don’t have a choice, right? Like, it’s either you take it or you’re going to die with it after like two years,” says Bolduc.

And while he can only afford a few months, he hopes it will buy him more years with those he loves.