Charlene Prime gave her 11-year-old daughter Jaylene a big hug. Jaylene suffers from juvenile idiopathic arthritis (SJIA) and needs the expensive medication Canikunimab to improve her quality of life. Troy Landreville Langley Times

B.C. family first to receive reimbursement for life-altering arthritis drug

Effective medication used to treat rare form of juvenile arthritis costs $19,000 a month

Jaylene Prime and her family have reason to be ecstatic.

The 11-year-old Aldergrove girl has become the first child with juvenile arthritis in B.C. to be granted reimbursement coverage for the life-altering drug Canakinumab, on an exceptional basis.

Canakinumab is a medication that has been proven to be very effective and has greatly improved the outcome for children living with a rare, painful and potentially life-threatening autoinflammatory disease called Systemic Juvenile Idiopathic Arthritis (SJIA).

This medication carries a price — and a hefty one at that.

With a monthly cost of $19,000, Canakinumab is not usually covered by PharmaCare.

Jaylene’s mom Charlene partnered with a B.C. charity, Cassie and Friends, to fight for access to the medication, not just for her daughter, but for other kids living in constant pain with the extremely rare form of arthritis. SJIA causes the body to attack itself, leaving children with crippling muscle and joint pain and virtually no immune system.

Today, the Cassie and Friends Society is praising the decision by the BC Ministry of Health.

“In making this decision, B.C. is recognizing the devastation of arthritis in children, and ensuring affected kids and their families have reimbursement access to a treatment in severe cases following a transparent qualification process assessed by paediatric rheumatology experts,” Cassie and Friends noted, in a statement.

Charlene said the coverage was approved on Feb. 16, and that her daughter hasn’t started taking Canakinumab yet.

“The application had to go out for it and then the medication has to be delivered, so (Jaylene) will receive it next week as far as we know,” Charlene told the Times on Wednesday.

Jaylene had been denied Canikunimab for more than a year and is on a similar drug, Kineret.

Along with the 80-plus pills she has to take each week, Jaylene received eight painful, fire-like, injections a week to keep her arthritis symptoms in check, but this medication wasn’t relieving all her symptoms. She suffered daily and recently had to go to BC Children’s Hospital with intensified symptoms.

The relentless pain from her SJIA clings to her body like a parasite.

Charlene told the Times that her daughter was home from school on Wednesday because she has developed heart inflamation.

“Progressively, we have not been able to get her off all the medications,” Charlene said. “So it’s really nice the government has stepped up. We didn’t have anywhere to go from here, except (to) increase all of her medication. It’s a very welcome relief.”

Jaylene was injected with Kineret every morning and in an interview just before the new year, talked about the harrowing experience.

“It feels like squeezing lemon juice on an open cut or fire under my skin,” Jaylene said.

“We live this disease,” Charlene said prior to the announcement

Charlene said her daughter has the rarest form of arthritis for children. “Three in a thousand children get arthritis and only 10 per cent of them get this form,” Charlene said.

Led by executive director Jennifer Wilson, Cassie and Friends has worked with the Prime family and others to start a petition to give B.C. children access and coverage for this medication.

Cassie and Friends is a Vancouver-based national charity working to transform the lives of children and families affected by juvenile arthritis and other rheumatic diseases.

The charity is leading the call for the B.C. government to give the small number of other B.C. children with SJIA reimbursement coverage for Canakinumab.

They have now collected more than 8,000 signatures on their online petition as well as hundreds more on paper pledge forms. The petition and signers’ comments can be viewed here.

The petition, started a year ago, took flight, when six-year-old Landen Alexa’s story went public. Landen was diagnosed with SJIA on June 14.

• SEE RELATED STORY HERE

Medication vital

One injection of Canakinumab, which is administered monthly, costs $19,000.

This once-a-month injection will allow Jaylene to stop using her current medication. Charlene says it will be life-changing for her daughter, allowing her to live a normal childhood again.

The cost of the drug is out of reach for an average working family, said Charlene, who sent a letter to B.C. premier John Horgan, health minister Adrian Dix, and Eric Lun, the executive director, Drug Intelligence and Optimization Ministry of Health Services, asking for an “urgent review of pharmacare coverage of canakinumab” in B.C.

Just Posted

Two Nuxalk artists awarded YVR Art Foundation scholarships

Several Nuxalk artists have won the award, some more than once

Convicted animal abuser to return to B.C. court May 21

Catherine Jessica Adams is facing a breach of probation charge

Concerns over democracy as Senate committee votes to nix oil tanker ban

Critics of the Senate’s recommendation to kill Bill C-48 say it goes against popular will

Open casting call issued for Trevor Mack’s first feature-length film

All Indigenous actors, preferably local Chilcotin people, are needed for Portraits From A Fire’s cast

New ferry to B.C.’s central coast sets sail, a year late and $20M over budget

Northern Sea Wolf will cost $76 million when it hits the waters in June

Kelowna toddler suffers cracked skull after fall from balcony

Neighbour who found the two-year-old boy said he has a bump the size of a golf ball on his head

Unbe-leaf-able: Agassiz man finds more than 200 four-leaf clovers in a month

Walt Hardinge has found more than 219 four-or-more leaf clovers this spring alone

Crews fight fire with fire to keep blaze from northern Alberta town

The wildfire now covers some 920 square kilometres

Man in B.C. charged with murder and arson in 2016 New Brunswick death

He is charged in the death of 71-year-old Lucille Maltais, who was found inside a burned down home

Improve your life and theirs, adopt a cat from the BC SPCA

The BC SPCA holds an adult cat adoption promotion

RCMP probe if teen was intentionally hit with ski pole by mystery skier on B.C. mountain

The incident happened on March 20 on Grouse Mountain. Police are urging witnesses to come forward

Support growing for orphaned Okanagan child after father dies in highway crash

Family thanks emergency crews for assistance in traumatic incident

Pipeline protester chimes in on Justin Trudeau’s B.C. fundraising speech

The government purchased the Trans Mountain pipeline and expansion project for $4.5 billion

Baby boom seniors putting pressure on B.C. long-term care: report

B.C. leads Canada in growth of dementia, dependence on care

Most Read