Steven Gallagher of St. Catharines cherishes every single day with his six-year-old daughter — his pride and joy — and his wife, all while knowing his time with them is limited.
Over time, he’s turned his focus from the three letters of his diagnosis of “ALS” to the four of “Hope.”
Gallagher was diagnosed last year with amyotrophic lateral sclerosis, a neurodegenerative disease that causes gradual paralysis, and eventually robs patients of their ability to walk, talk, and breathe. Right now, there is no known cure.
But Gallagher and other patients and their advocates are petitioning Ottawa to help speed up the process of approving trials, and getting the meds into patients’ hands.
“It’s just so important that [new treatments] happen for people with ALS because the clock is ticking for us,” Gallagher said.
“None of us know when our time will come. But when you have something that’s a terminal disease, while you’re living in the moment, you’re really hoping and wishing that they move quickly to find some advances in treatment.”
Canadians living with ALS and other advocates say there are 90 clinical trials ongoing for the terminal disease, with six potentially seeking approval in 2021. But there’s no set timeline for the steps between Health Canada’s approval, and getting the drugs to market.
There are currently only two treatments for the disease available in Canada, says the ALS Society of Canada.
An e-petition to the House of Commons, started by ALS patient and author Norman MacIsaac, asks the federal government to run a pilot project to reduce the delay for Canadians to gain access to treatments.
The petition asks that a timeline of three to six months be set for the processes that come after Heath Canada’s approval. That includes looking at the clinical and cost effectiveness of the drug, setting prices, and negotiating province reimbursement. Different bodies are responsible for each of these actions.
More than 11,000 signatures
At the time of writing, the petition has gathered over 11,000 signatures. It closes on Jan. 5.
“Anything that would expedite the process to get a treatment to people would be incredibly important,” Gallagher said of the petition.
“I’m grateful to live in a country that has universal healthcare and that supports people…As a patient or someone living with ALS, if a new treatment does become available, I hope it’s available to people as soon as it can be.”
Tammy Moore, the CEO of ALS Society of Canada, says the current process is untenable for those with terminal diseases. People with an ALS diagnosis are given two to five years to live, so timeliness is crucial, she said. A lag could mean “generations” of people with ALS will die while waiting.
Patients could die while waiting
Even if someone wanted to buy a treatment directly, Moore said, that price would already have to be set or the company would need to look at abandoning a patent, which wouldn’t be an attractive option.
“It could very likely be that somebody diagnosed today could see a drug approved and be available to people within the U.S., and they will die never having access within Canada,” she said.
Moore noted that 10 years have gone by since Health Canada approval for a treatment for the rare disorder PKU, but Canadians still don’t have access.
She said the therapies look at slowing the progression of ALS. In order to do so, the treatment must be given to people as early in their diagnosis as possible, she said.
“If that’s not possible because of the process, then even if people had access, by the time it comes, it will be too late for them. And so our community is desperate,” said Moore.
2 available treatments right now
The two treatments available in Canada include Riluzole and Radicava, which is generically known as Edaravone.
Riluzole, which can extend a life by three months, was the only treatment for 20 years. Radicava was approved in October of 2018, but wasn’t available until 2020.
Gallagher, 48, was bowling with his daughter when he felt pain in his hand, and was diagnosed last August after a long stretch of testing. He received his first treatment of Radicava in January 2020.
He says his health-care team isn’t truly able to say how quickly or slowly the disease is progressing in his body, but he mentally feels good about having the Radicava in his system. So Gallagher does what he can — medication, vitamin supplements , exercise, therapy — and prays that more treatments help slow the disease or stop it all together.
“I think when you say ALS to people, they think the worst,” Gallagher said. ALS hangs like a “dark cloud,” he said. At the start, he was overwhelmed with thoughts about leaving his wife and daughter behind, and burdening his family.
Grateful for every moment
But support from family, friends, and ALS Canada resources have him in a better place. He focuses now on living, and the stories he knows of people diagnosed 10 to 20 years ago that continue to live well.
“I’m grateful for every day,” he said. “Every moment.”
Gallagher says he wants to continue being “an advocate and champion” and lending his voice to a choir of courageous people with ALS who are fighting and raising awareness of the devastating disease.
And if there’s any chance that he can be part of something, Gallagher’s told his neurologist to “sign me up.”
“Selfishly, I hope that I can benefit from those down the road. But if not, I hope that somebody else does in time.”