Picture from North Shore News: http://www.nsnews.com/lifestyle/deep-cove-teen-has-cautionary-health-tale-1.23127827
Deep Cove resident Senya Kyle has lived with chronic pain from systemic juvenile idiopathic arthritis (sJIA) since she was a little girl. Senya is now a Grade 10 student at Seycove secondary. Instead of playing soccer and hiking Quarry Rock with her friends and participating in other school activities, she watches from the sidelines. After school, she can’t even join her friends for a walk around the mall.
Due to her sJIA, Senya has fused vertebrae in her neck, along with serious joint damage in her feet. As of yesterday, the number of ankle surgery Senya has gone through is four. According to Senya, every step she takes is a dull ache mixed with stabbing pain in her ankle. Sometimes, her pain is so unbearable that she cannot move. She is forced to live a sedentary life at the young age of 15. In an interview with North Shore News, Senya says: “That’s pretty much all I can do, is sit down and hope that (the pain) will go away.” At her worst, Senya had 40 joints inflamed at one time.
Arthritis Consumer Experts and Cassie and Friends Society have launched a canakinumab access campaign.
Juvenile arthritis (JA) affects approximately 24,000 infants to teens in BC and Canada, or 3 in every 1,000, making it one of the most common causes of chronic disability in children. Ten to 20 percent of those children have systemic juvenile idiopathic arthritis (sJIA), a severe and potentially life-threatening form of the disease – and many can’t get the medication they desperately need.
In partnership with Arthritis Consumer Experts, Cassie and Friends Society is leading a call for the BC Government to drastically improve the outlook of children with sJIA by allowing reimbursement coverage for canakinumab for the small number of children who need it.
Why have we launched our canakinumab access campaign?
Canakinumab is publicly funded in other Canadian provinces/territories but not BC, putting British Columbian children living with sJIA and other autoinflammatory diseases at a horrible disadvantage by denying them access to a life-changing therapy.
Calling on the BC Government to save and change the lives of children living with systemic juvenile idiopathic arthritis.
Juvenile idiopathic arthritis (JIA) affects 24,000 infants to teens in BC and Canada, or 3 in every 1,000, making it one of the most common causes of chronic disability in children. Ten to 20 percent of children living with JIA have systemic juvenile idiopathic arthritis (sJIA), a severe and potentially life-threatening form of the disease. Both JIA and sJIA can be devastating and come with high financial, family and societal burdens.
In partnership with Arthritis Consumer Experts, Cassie and Friends Society is leading a call for the BC Government to drastically improve the outlook of children with sJIA by allowing reimbursement coverage for canakinumab for children who need it. For children who do not respond to other treatments, canakinumab can prevent progression of the disease and disease symptoms.
Cassie and Friends is urging all parties running for public office in British Columbia to make juvenile arthritis and canakinumab reimbursement access a health priority during the upcoming provincial election on May 9. You can help by sharing your story or sending an email or letter to your candidate. Together, we can help improve the lives of children living with arthritis!
What can you do? Continue reading
BC PharmaCare is looking for your input on canakinumab for the treatment of systemic juvenile idiopathic arthritis (sJIA)
Canakinumab (Ilaris®) is now being considered for coverage under the British Columbia Ministry of Health’s PharmaCare program. By filling out a questionnaire on a website called Your Voice, you can provide feedback about canakinumab for the treatment of sJIA.
You can give input if you are a B.C. resident and have sJIA, a caregiver to someone with sJIA, or if your group represents people who live with sJIA.
The input is reviewed by the Drug Benefit Council, which then gives recommendations on whether a medication should be covered, and how, by BC PharmaCare. BC PharmaCare then makes a decision based on those recommendations and available resources. Policies and plans already in place also factor in the decision making process. Continue reading