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

Grim situation in coming year for northwest, B.C. fisheries

Annual post-season review in Prince Rupert informs DFO on how to manage 2019 fishing season

Sports Briefs

Your top athletes and teams

VIDEO: Dog behaviourist holds classes to raise funds for NARA

Holidays are a busy time for rescue agencies

Residential projects delayed for years in Terrace pick back up

LNG confidence a catalyst for progression, developers say

Terrace one step closer to first pot shop

Public hearing on BC Cannabis store in Skeena Mall scheduled for Dec. 10

VIDEO: This B.C. school leads country in vaccine donations to UNICEF

Federally funded Kids Boost Immunity uses quizzes to earn vaccinations

Natural gas rates will go up in B.C. on Jan. 1

Regions could pay up to $68 more

Top House Dems raise prospect of impeachment, jail for Trump

It could be an “impeachable offense” if it’s proven that President Donald Trump directed illegal hush-money payments to women during the 2016 campaign.

Macron addresses France amid protests; is it too late?

Paris monuments reopened, cleanup workers cleared debris and shop owners tried to put the city on its feet again Sunday.

CUPE calls off Flair Airlines job action citing job security concerns

The union says it’s going to challenge Flair’s move at the Canada Industrial Relations Board before proceeding with any job action.

Trump looking at several candidates for new chief of staff

Trump’s top pick for the job, Nick Ayers, is out of the running and Trump is now soliciting input on at least four individuals.

Canadian physicist collects Nobel Prize

Canada’s Donna Strickland is one of three winners of this year’s Nobel Prize for Physics.

BCHL players help Team Canada in shootout win over U.S.

Massimo Rizzo scores the shootout winner at World Junior A Challenge

Canada Post backlog, Greyhound exit creating headaches ahead of the holidays

The federal government forced members of the Canadian Union of Postal Workers back to their jobs late last month

Most Read