Advocates march to health ministers meeting to demand coverage for new treatment for rare spinal disease

Families and advocates for patients with a rare degenerative disease marched through downtown Winnipeg to the hotel where federal,provincial and territorial health ministers gathered Thursday, demanding coverage for a new drug treatment that costs hundreds of thousands of dollars every year.

Maylia and Ryan Bodman's two-year-old daughter,Braelyn, has spinal muscular atrophy, or SMA, which causes muscular wasting and loss of motor functions.

The disease means Braelyn will get weaker over time she has already lost the ability to roll over on her own. Maylia Bodman said the disease presents a host of challenges for her daughter.

Watch: Parents explain the $750-Kcost of drug that could be their daughter's only hope.

Families demand coverage for expensive medical treatment

6 years ago

Duration 2:53

Families of children with spinal muscular atrophy marched to the health ministers meeting to demand coverage for a new treatment for the disease.

"She can't be as independent as she wants to be. She's not able to stand or walk and over time she's going to lose strength and maybe have trouble breathing and maybe eating and swallowing food," she said.

About 30 per cent of kids diagnosed with Type 2 SMA, like Braelyn, die by the time they are 25 years old, Bodman said. Kids with Type 1 often die before age two.

"Usually due to respiratory issuesif they get sick [with] pneumonia or something like that, it can be very dangerous for them. So it's always a concern for us, but we just try to take it day by day and now there's a treatment available," she said.

That treatment involves regular injections of a drug called Spinraza, which is produced by Biogenand wasapproved last June by Health Canada.

A representative for Biogen, who helped promote Thursday's rally, told CBC News the drug treatmentin Canadacostsapproximately $700,000 in the first year, and $350,000 every year after that.

"Almost no families" can afford it, said Susi Vander Wyk, executive director of Cure SMA Canada.

"There are some that have some private insurance, but most families in Canada don't have that or they have limits as to how much the private insurance will cover."

Vander Wyk and the Bodmans joined families from across Canada on Thursday, marching to Winnipeg'sFort Garry Hotel, where the health ministers are meeting for their annual summit.A national pharmacare program is on the agenda for the two-day meeting.

"We as a community have been waiting and watching as other countreis haveapproved this treatment, which is the only treatment that's ever been approved for SMA," Vander Wyk said.

Vander Wyk said patients with rare diseases are at a disadvantage when it comes affording life-saving drugs.

"You can't look at it like you're looking at a disease that's receiving treatment that's costing less," she said. "The cost of development is the same whether it's for a rare disease or a common disease.

"It's the worst time in the world for theSMAcommunity. There's a treatment but we can't access it. So the answer for us is still the same, take your child home and love them for as long as you have them."

Braelyn's dad, Ryan, said he wants the drug covered so his daughter can have a chance at living a full life.

"We're giving her the life that any other kid would have. Her daycare treats her like every other kid. They accommodate her, she does everything that every other kid does," he said.

"But we just need the treatment so she can keep up with them going forward."

The health ministers summit concludes in Winnipeg on Friday.