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

Port Alberni man dies in single-vehicle collision

Pickup truck with three occupants went off the road on first day of May long weekend

Alberni hosts Island track and field championship

Secondary schools compete at Bob Dailey Stadium

Is Steve Nash Vancouver Island’s best athlete of all-time?

As Captain Canada gets ready to enter basketball’s Hall of Fame it’s time to debate his legacy

Who is Vancouver Island’s greatest athlete ever?

We want to know, you get to choose in a 64-athlete tournament bracket

200,000 salmon smolts released in netpens for Alberni salmon enhancement

West Coast Aquatic has released 205,000 chinook smolts into two net pens… Continue reading

VIDEO: Canadian Forces help flood-ravaged Grand Forks residents heal

Sgt. Bradley Lowes says the military is used to dealing with traumatic times

Friends and family playing huge role in search for Vancouver Island man

Volunteers from the public join forces with SAR crews

Chilliwack Chiefs make history with first RBC Cup win

In front of a huge and noisy crowd, the Chiefs claimed their first-ever national junior A title.

UPDATED: Majority of flood evacuees in Kootenay-Boundary allowed to return home

Officials hope to have all 3,000 people back in their homes by Monday night

B.C. Lions bring back 6-time all-star offensive lineman Jovan Olafioye

He was acquired by the Montreal Alouettes last year.

Whitecaps rally for 2-2 draw with FC Dallas

Vancouver climbed out of a two-nil hole to tie FC Dallas 2-2

B.C. VIEWS: Making sense of climate policy

Flood and fire predictions have poor track record so far

Chilliwack Chiefs moving on to RBC Cup final after thrilling win over Ottawa

Kaden Pickering scored the winning goal in the 3rd period as Chilliwack won their semi-final 3-2.

VIDEO: As floodwaters recede, crews assess the damage to Grand Forks’ downtown

More than four dozen firefighters and building inspectors came out to help

Most Read