VANCOUVER -- B.C. families gathered in downtown Vancouver Wednesday, calling on the provincial government to provide better access to a life-changing drug that helps sufferers of a rare and severe degenerative disease. At the very least, they want B.C. to match what’s being offered in other provinces.

The disease is called spinal muscular atrophy, a neuromuscular disorder that results in the loss of motor neurons and progressive muscle wasting. Fewer than 30 people in B.C. have been diagnosed with it.

For many sufferers, it means depending on a wheelchair as muscles weaken over time.

Alex Cary is 25. He wanted to go to university and get a job after graduating from high school in the Comox Valley.

“It took a lot of work, after four years I was able to begin my degree," Cary said. "After taking a few terms of classes I realised that all of the work that I had put in, might not end up mattering.”

Every year, his physical strength is weakening. He’s now at the point where he needs the skin peeled off apples to eat them.

“The muscles in my jaw and throat are so weak that I choke on them.”

There is a drug that could help Alex. It’s called Spinraza and is incredibly expensive. The drug's U.S. manufacturer, BioGen, normally charges $118,000 a shot; $708,000 for the first year of treatment and $354,000 for each subsequent year.

In December, the B.C. government announced patients would qualify for coverage if they were under 12 and had never walked before.

By comparison, Alberta, Saskatchewan and Ontario have a cut off of 18 and adults are considered on a case-by-case basis. Quebec offers full coverage to everyone.

The age cut off means Alex is too old. And the walking requirement excludes four-year-old Zoe, who was diagnosed with SMA at age two.

Her family was lucky enough to access Spinraza through her mother’s private insurance just after her diagnosis.

“Almost immediately after Zoe started her Spinraza doses, not only did her deterioration stop, but we started to see significant improvements in so many aspects of her life,” said Zoe’s mother, Vivienne Damatan. “A few weeks ago, she told her grandparents that she wanted to be a dancing construction worker so that she could dance while she built things.”

But the private insurance is ending soon, leaving Zoe’s family in the lurch.

“We knew that private health insurance was a temporary plan, because we believed the government would be able to sustain us," Damatan said. "When the announcement came out everybody was pretty shocked, without the treatment we are 100 per cent certain she wouldn’t be able to walk.”

Susi Vander Wyk, the executive director of Cure SMA Canada, wants the government to expand coverage.

“What are we doing wrong here?" she asked, rhetorically. "The answer is simple. We aren't valuing our B.C. citizens' lives.”

December’s announcement said coverage is in line with the most recent recommendation from the Common Drug Review. 

CTV News Vancouver reached out to Health Minister Adrian Dix for comment. A response from the ministry received after 6:30 p.m. reiterated the government's policy for covering the drug, but added that there is "flexibility" to cover patients older than age 12.

"The Province’s coverage decision fully aligns with the Canadian Agency for Drugs and Technologies in Health (CADTH) final recommendation and available clinical evidence, but also provides flexibility to allow coverage for additional patients, including those who no longer meet the age recommendation while Spinraza was under review," the ministry said.

"Patients who are between the age of 13 to 18 years old, who otherwise meet the CDR recommended criteria, may also be considered on an exceptional case-by-case basis when requested by their physician."