B.C. PharmaCare grants coverage of $19K-a-month drug to treat girl with juvenile arthritis

A child from Aldergrove will be the first person to get B.C. PharmaCare coverage for Canakinumab, a drug to manage her rare juvenile arthritis at a cost of $19,000 per month.

Jaylene Prime's case 1st time B.C. government has agreed to cover costly drug for rare juvenile arthritis

Jaylene Prime was diagnosed with Systemic Juvenile Idiopathic Arthritis three years ago. She's the first child in B.C. to receive PharmaCare coverage for a drug that will cost $19,000 a month. (Charlene Prime)

As Aldergrove's Charlene Prime describes it, her family's morning routine involves a fair amount of screaming and throwing things.

Her daughter, Jaylene, 11, suffers from a rare form of juvenile arthritis and requires an elaborate combination of pills and injections.

"Her older sister, Anika, actually helps with her injections every day. We do it as teamwork," said Prime. "We get together, Claire, the youngest, will dance to provide distractions."

Jaylene says the daily injections burn and feel like fire under her skin.

But starting next week, she'll have some relief from the needles and bowls full of pills, and hopefully her symptoms. Prime has been approved for B.C. PharmaCare coverage for an expensive drug, Canakinumab, to manage the symptoms of her Systemic Juvenile Idiopathic Arthritis (SJIA), .

More than $200K a year

Canakinumab costs about $19,000 each month for a single injection. It will replace the multiple pill and injection prescriptions and reportedly doesn't burn when administered.

Prime has been approved for six months of coverage before her case is reviewed.

While other children in B.C. have been taking Canakinumab, this is the first case in which the government will cover the cost.

Jennifer Wilson, executive director of Cassie and Friends Society, an advocacy group for kids and families affected by juvenile arthritis and other rheumatic diseases, is celebrating the PharmaCare coverage, despite the cost.

"No doubt, Canakinumab is a costly drug, and we recognize that, but cost cannot be the only factor in deciding when a drug is allowed to be used on B.C. citizens but especially our most vulnerable citizens, who are children," said Wilson, who adds that there's now a clear and transparent process in place for patients to get similar approval.

According to Wilson, Prime's condition is especially severe, but there are still other children in need.

"In the long run, that will benefit all kids with SJIA," she said of Prime's case.

Other cases

Another case that's popped up in the news is that of Landen Alexa, 6, in Sooke. His family has a fundraiser started online in an attempt to afford Canakinumab, which has been prescribed by a doctor.

But after two months, the fundraiser hasn't received enough donations to afford a single month of the costly drug.

Landen Alexa, 6, has been prescribed Canakinumab, but his family can't afford the drug. (Jillian Lanthier/gofundme.com)

Jaylene Prime is optimistic that other children like Alexa with SJIA will also get coverage, which could theoretically add up to millions of dollars over a lifetime.

"For the parents of those children, just keep advocating. It'll happen," said Prime. "Keep trying, and they'll get it one day."

And in her own case, she's hoping Canakinumab brings a dramatic improvement.

"I just hope it'll work," said Prime. "I want one injection a month, not, like, 30 a month, and I want to be able to participate in gym class, and run and hang out with my friends and ride my bike and stuff."

Follow Rafferty Baker on Twitter: @raffertybaker

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Rafferty Baker

Rafferty Baker is CBC Vancouver's mobile journalist. Follow him @raffertybaker