‘I’m using all of my savings to stay alive’
Nancy Roch is on mission to improve access to new drugs for Canadian ALS patients
“Come this way,” said a private nurse, leading the way to the dining room where Nancy Roch was installed.
Roch would have come to the door herself, but she was attached to an intravenous drip hanging from a chandelier in her Montreal apartment. The former head of French-language programming at Radio-Canada, Roch is on an experimental drug for ALS that she bought after tracking the drugmaker to Japan.
Roch had done her research. She learned that ALS is an aggressive neurodegenerative disorder that hits without regard for sex or age. Patients with amyotrophic lateral sclerosis lose the ability to move and, eventually, to breathe. Nearly half die within 18 months of diagnosis.
Riluzole, the one ALS drug that exists outside of clinical trials in North America, was approved more than two decades ago and extends patients’ lives by a mere few months. But clinical trials of the Japanese drug suggest it slows the disease progression by 33 per cent.
Roch spent $25,000 of her savings to fly to Japan to buy a three-month supply of that new medicine, called Radicava (generic name: edaravone). She would have stocked up on a bigger supply but Customs Canada regulations do not allow more than a 90-day supply.
Once she got back, the Ordre des infirmières et infirmiers du Québec said its code of ethics does not allow its nurses to inject a drug that’s not approved for use by Health Canada. And edaravone isn’t approved in Canada.
In other provinces, nurses aren’t constrained by the same regulatory barriers to administer edaravone. Roch hired a private nurse (who asked not be named, because in working for Roch, she’s contravening the Ordre’s rules) to come to her home and give her the medication.
“I’m using all of my savings to stay alive,” Roch said. Her Montreal physician and ALS specialist gave her a prescription for edaravone, “with all her support,” Roch said. But the provincial health board doesn’t cover its costs. Her private insurance has also refused her request for coverage, claiming the drug is under investigation by Health Canada and therefore not yet approved.
Feeling abandoned by the health system and caught in bureaucracy, Roch threw herself into a mission to improve access to new drugs for Canadian ALS patients.
In a letter to Prime Minister Justin Trudeau, Roch wrote: “Please help us get access. ALS is a fatal disease and it goes fast.”
The disorder affects roughly 3,000 Canadians. But there are few survivors because 90 per cent die within two to three years of diagnosis. Roch got her diagnosis in March. She said she’ll continue lobbying as long as she can.
She wonders how it’s possible that all the money raised by the Ice Bucket Challenge, an estimated $220 million worldwide, led to little advancement in terms of therapy or a cure.
The U.S. approved edaravone in May, and two months later, the California Institute for Regenerative Medicine granted $16 million to Israeli company BrainStorm to run an advanced trial for stem-cell therapy called NurOwn.
BrainStorm had initially wanted to do the Phase III trial in Canada, the phase at which a drug can be sent to Health Canada for approval. “They’re still waiting to hear back from Health Canada,” Roch said.
Her letter to Trudeau notes that his government is perpetuating an “immense injustice” on Canadian citizens by not recognizing the urgency of giving patients with progressive illnesses access to life-saving medications available elsewhere.
BrainStorm’s NurOwn has shown a reversal in motor decline in ALS patients.
For ALS patients like Roch, a reversal is a breakthrough, she said, and compared to the current medication available, “it’s a miraculous therapy.”
But in Canada, patients are supposed to continue waiting — and dying, Roch wrote to Trudeau.
“My biggest fear, in this bureaucratic slowness, is that I’ll lose my autonomy,” she wrote.
Meanwhile, a friend who flew to Japan brought her another threemonth supply of edaravone, this time the generic brand, at a cost of $5,000.
She’s looking for other options. It’s not clear if Roch will be enrolled in a Phase II clinical trial in Montreal using pimozide, an antipsychotic drug used to treat schizophrenia that seems to stabilize ALS in the short term.
She dreams of travelling to Israel to seek stem-cell therapy from BrainStorm.
And, she’s already inquired about medical aid for dying. “I don’t want to be a burden to society.”