Teen misses cut-off age for medicine that would change his life

CBC Kids News • Published 2020-01-29 10:02

Coverage only offered to patients 12 and under

Imagine you have a rare disease that’s treatable, but only by one of the most expensive medicines in the world. 

Fortunately, your province has just decided to cover the cost of that drug for more young patients.

Unfortunately, you’re too old to make the cut.

That’s the dilemma one teen is facing in New Westminster, B.C.

"It really makes you want to punch a hole into the wall and scream,” Miles Ambridge said.

Miles hopes to work as an anesthesiologist or a lawyer one day, but worries that the progression of his spinal muscular atrophy will make that impossible. (Harman/CBC)

Impact of the disease

Miles was born with a disease called spinal muscular atrophy (SMA), which causes the muscles to weaken and waste away.

At 14, Miles can barely move his legs, and his arms and lungs are getting weaker.

"It is life-limiting and that's the scary part," Miles said.

"We don't know how long it'll take for me to lose the strength of my arms or my voice."

Miles's mom adjusts his wheelchair.

Miles and his mother Anne Belanger, left, want access to the drug Spinraza as soon as possible. Studies suggest the older the patient is when they start treatment, the less effective the medicine is. (Mael Thebault/CBC)

How expensive is the drug?

Miles has been waiting years to have access to Spinraza, a drug that’s been shown to slow the progression of the disease in up to half of patients.

But the drug costs a whopping $118,000 a shot.

With that much money, Miles and his family could buy almost six Honda Civics from a Vancouver car dealership.

And Miles would need multiple shots each year.

Miles sits in his wheelchair with his head in his hands.

Miles has a form of spinal muscular atrophy that develops relatively slowly. But he says he can feel his lungs getting weaker. (Harman/CBC)

Why are there age limits?

The B.C. government expanded its coverage for the cost of Spinraza just before Christmas.

Trouble is, the province only covers patients up to the age of 12.

Why? In an email, officials with B.C.’s health department said they can’t afford to pay for all medicines.

That’s why they rely on a national research group called the Canadian Agency for Drugs and Technologies in Health to help them decide which ones to cover, and for which types of patients, based on scientific evidence.

Exceptions are possible

The province said it will help pay the cost of Spinraza for older patients in some “exceptional” cases.

That’s not good enough for Miles, who worries about his future.

“It’s beyond me and it’s baffling,” Miles said.

Still, he plans to see his doctor on Feb. 5 to start the process of applying for special access to Spinraza.

Baby lies in parents arms.

In Toronto, Eva Batista’s parents are hoping their daughter can get treatment for spinal muscular atrophy before she turns two, because the drugs are less effective the older the patients get. (Paul Smith/CBC)

What about other provinces?

Most other provinces cover Spinraza for all patients under the age of 18.

Still, some SMA treatments are out of reach no matter where you live in Canada, because they haven’t been approved for use here yet.

Some families have started fundraisers and even entered contests to win free doses from manufacturers, in order to get access to certain drugs.


With files from Bethany Lindsay, Olivia Stefanovich/CBC News

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