Jared Wayland's hopes have been buoyed by the overwhelming support he has received from people across the province as he continues to wait for access to a "miracle drug" to treat the Type 3 spinal muscular atrophy he has lived with for most his life.
The 31-year-old St. Catharines man said an online petition at change.org, launched by his cousin Dereth Perkins, has garnered more than 14,300 names over the past two months. The petition calls on the provincial government to remove age restrictions and make the drug Spinraza available to all patients inflicted with the debilitating and potentially fatal rare disease.
"I didn't even know (the petition) had started until about 1,000 people had signed it, and it kind of took on a life of its own," Wayland said.
He attributed some of the response to change.org, which posted it on the front page of its website for a few days. The petition was also shared by several SMA support groups, adding thousands of additional names to the list.
The drug, developed by U.S.-based Biogen, was approved for OHIP funding for patients up to 18 years old earlier this year. But Wayland is one of about 30 patients in Ontario who are ineligible for coverage due to their age.
And paying for treatments out of pocket is impossible for Wayland.
With a reported price tag of about $708,000 for the first year of treatment, and about $354,000 annually after that, it is among the most expensive drugs on the planet, and far out of reach for most patients.
Wayland said there's no guarantee the petition will have any impact, but there's "strength in numbers."
"It shows, from reading comments (on the website) that I'm far from being the only one in this situation, and not just for this drug."
The province has said it will consider funding for patients older than 18 on a case-by-case basis. Wayland said his physicians have applied for OHIP funding through that program.
But he isn't holding out much hope that his application will be successful. He said he knows of only one SMA patient older than 18 for whom funding has been approved.
"My doctor strongly feels that at my stage of SMA and my mobility as it is, that I would be … an ideal candidate for this," Wayland said.
"It's shown to work, so let's get going. I guess that's the motto — let's get going."
In the years since Wayland was first diagnosed with SMA at age 13, the disease has slowly ravaged his body — weakening his muscles and leaving him unable to get around without the use of a wheelchair. If left untreated, the disease will continue to progress until it threatens his life.
Meanwhile, he said St. Catharines MPP Jennie Stevens has been working behind the scenes at Queen's Park advocating for SMA patients across Ontario.
Stevens called the response to the petition "amazing."
"That's a hard number to be able to tally up to and it just goes to show you that we need to do something. This government has to act on making Jared's life a lot easier," she said.
"We're hoping that having 15,000 signatures on a petition will put a little bit of pressure and shame on them."
In the petition to Premier Doug Ford and Health Minister Christine Elliott, Perkins called the 18-year age limit for access to the drug "age discrimination at its worst."
"Jared and his family have waited 17 years for Spinraza to become available, and now Jared is being denied simply because he is over 18," the Stouffville resident wrote.
"Jared and people like him shouldn't be forgotten. Please join me in urging Ontario to remove the age restriction on Spinraza funding to give everyone with SMA a fighting chance at life."