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