One man is cycling across Canada to raise awareness and funds for research about a genetic disease for which many patients can’t access treatment.
Bernard McNeil’s grandson, Malik, has spinal muscular atrophy (SMA), a nerve condition that affects a person’s ability to make voluntary movements.
Due to inactivity, muscles weaken and shrink. The disorder can also affect breathing and swallowing.
The lifespan of someone born with SMA can be as little as two years.
McNeil began his trip from Vancouver to Montreal on June 4 to raise awareness for Malik and those who can’t access treatments for the condition.
“Our babies are covered in all of Canada … but adults, it’s not like that,” he told Global News on a break from cycling in Winnipeg.
“It’s a shame.”
In Canada there are three approved treatments for SMA and all have proven to be successful in managing symptoms, but the parameters to access them are limiting.
In Saskatchewan and Quebec treatment is available to all, but elsewhere in Canada only those who are under 25 or can’t walk can access treatments. Others are left without.
Jeremy Bray has been trying to access one of the approved treatments through applying for an exception and working with pediatric neurologists, to no avail.
“To be honest I never really thought I’d ever have access to treatments,” he said.
The National Institutes of Health estimates there are between 700 and 2,140 cases of SMA across the country, with approximately 35 new cases per year.
Bray was diagnosed with SMA at 18 months old. Now 28, his level of mobility is restricted to one finger on his left hand which helps him navigate his world: work as a data consultant for the Louis Riel School Division, scroll his smartphone and steer his motorized wheelchair.
If his condition worsens and he loses the last of his mobility, he loses the remainder of his independence.
“It really is sort of a ticking clock for people like me,” he said. “The progression of our disease will continue to take away our agency and our independence and many of us can’t wait too long until our ‘normal’ is taken away from us.”
Susi Vander Wyk, executive director of Cure SMA Canada, said treatments have saved countless lives.
“Before treatments came along, I would send out ‘newly diagnosed’ packages (to parents), and most of the time I would follow those up within two years with and end-of-life package for the family,” she said.
“Since treatment I hardly ever send out an end-of-life package.”
Treatment, which includes injectables, a treatment specifically for pediatrics and an oral treatment, can improve lung function, reduce reliance on home care supports, result in less time spent in hospital and afford adults stable employment.
Vander Wyk said the province won’t increase access to SMA treatments because data doesn’t support it, yet when the organization provides their own research in its favour, the government still refuses.
“Before this happened, we just had the disease. But now we’ve got the disease and we have the knowledge that a government is not valuing our life.”
“SMA needs access to treatment broadly, lives are depending on it.”
The province was not available for comment on Sunday.
On the road for 35 days thus far, McNeil has raised nearly $10,000 of his $20,000 goal to fund research into the disease and possible treatments.
While he’s tired from the journey, the lifelong cyclist said it’s worth it.
“When I think what (patients) carrying on their shoulders, the weight of being limited … it gives me strength.”
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