A Moose Jaw, Sask., woman is opposing a federal decision against funding a potentially life-saving drug for those with spinal muscular atrophy (SMA).
“Hope is hard to hold on to when you’re watching your body turn on you daily,” Shailynn Taylor said.
She still counts herself as lucky. The 23-year-old university student is one of the only adults with SMA in Canada to have accessed the drug Spinraza.
“After the first dose, I saw strength coming back — no more choking, no more swallowing issues,” Taylor recalled. “It was like I was starting to get back the body I had five years ago.”
The rare neuromuscular disorder causes progressive muscle wasting, often leading to scoliosis or early death.
Get weekly health news
Over the past year, Taylor’s community raised $240,000 for four doses of Spinraza. The drug’s recommended loading dose is six shots, followed by three more every year.
However, the Canadian Agency for Drugs and Technology in Health has again declined to cover the medicine for people over 12 years old.
“We went through studies, we funded research, we fundraised, we fought for treatment for SMA,” Taylor said. “Now we’re here, adults, seeing this treatment, but we don’t get access because of our age.”
Provinces are not bound by the agency’s decision not to fund Spinraza. The Saskatchewan Party government will review the report in the coming weeks, but said it will likely follow suit.
“You don’t want politicians making decisions on what drugs should be covered or what drugs are effective,” Health Minister Jim Reiter said.
“People with these terrible conditions obviously need to hold out hope… We have to do what, from a medical standpoint, is appropriate. That’s why we rely on the medical experts to tell us whether these drugs are as effective as they’re held out to be, whether it would be appropriate to cover, and in this case, who would be the appropriate age group and types on conditions to cover.”
Taylor will meet with Ministry of Health officials and the Opposition NDP to continue lobbying for change.
In the meantime, she’s qualified for a clinical trial of an oral SMA-fighting drug through Columbia University.
“There’s no placebo control because the patients have already had treatment,” she explained. “I’m super grateful I have this opportunity, but there’s the guilt of knowing everyone else with SMA hasn’t had one treatment, let alone the opportunity for a second.”
“It’s just so heartbreaking to sit here and have these results and know what the drug can do, then sit here and watch the community with SMA fighting to prove their worth and that they deserve the drug.”
Comments