B.C. girl gets access to life-saving drug
A B.C. girl living with a rare and potentially life-threatening form of juvenile arthritis has won access to an expensive drug.
Last month, 11-year-old Jaylene Prime wrote a letter to the B.C. government pleading to have access to the drug canakinumab, which pediatric rheumatologists say is highly effective in treating systemic juvenile idiopathic arthritis (SJIA), a disease that affects the joints and organs.
Jaylene and Landen Alexa of Sooke went public this year with their daily struggle of having painful daily injections of another drug, anakinra, which was causing them anxiety and trauma.
Jaylene described anakinra in her letter to the government as “burning fire” under her skin. Her mother told Postmedia that her sister had to hold Jaylene’s hand as she screamed every morning while getting her injection.
Pharmacare does not cover the $20,000-a-month Novartis-made drug, which has been on the market for only a few years.
The Ministry of Health, through Pharmacare’s special authority program, reviews every exceptional drug coverage request submitted by a patient’s physician.
Both children have gone through this process with their rheumatologists but have had multiple applications rejected.
Now an exception has been made for Jaylene.
In a statement, the Prime family said they were grateful Jaylene was granted coverage.
“The severe symptoms of this disease are gut wrenching to see happen on Jaylene’s young body. It shows us that the government is now working with B.C. pediatric rheumatologists and together they have put a criteria in place to ensure access for children with the most severe cases.”
The Cassie and Friends Society, a not-for-profit organization that advocates for children with juvenile arthritis and other autoimmune diseases, said in a statement that it was thrilled to learn of the Health Ministry decision to provide reimbursement coverage for canakinumab on an exceptional basis for Jaylene.
Jennifer Wilson, executive director of Cassie and Friends, said Jaylene is the first child in B.C. to be granted access to the drug.
She says other parents should feel very positive knowing that criteria are now in place for caseby-case access to canakinumab in severe cases like Jaylene’s.
“It shows that government and expert pediatric rheumatologists are working collaboratively to ensure fair access to the best available treatments when needed,” she said.
“We’re encouraging parents to keep advocating for their children by ensuring their pediatric rheumatologists are aware of the all of the challenges — health, social and emotional — their child with SJIA faces.”
Diagnosed with SJIA when she was eight years old, Jaylene is often unable to move, in chronic pain, and suffers fatigue. She says she has been on many drugs, but nothing works for very long.
She says canakinumab will allow her to stop using anakinra and prednisone, a steroid that has adverse side-effects including weight gain and anxiety. She hopes it will allow her to do activities she loves, like archery or riding her bike.
Wilson said about 24,000 children in Canada have some form of arthritis or pediatric rheumatic disease, the most common being juvenile idiopathic arthritis. Of those, about 10 per cent have SJIA, which affects not only the joints but also other parts of the body, including the liver, lungs, and heart.