Tell BCPharmacare: Support canakinumab therapy for children in need
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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.
Cassie and Friends Society, in partnership with Arthritis Consumer Experts, 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.
How will canakinumab help children?
Canakinumab is a biologic medication that targets the specific immune dysfunction we now know is causing the severe symptoms of SJIA. There are relatively few children in BC that will require canakinumab, as most children with SJIA respond to other treatments. However, for these vulnerable and ill children, canakinumab is their only hope to avoid the progression of their disabling, potentially life-threatening, disease.
In receiving canakinumab therapy, children will experience reduced disease symptoms and allow for the rapid discontinuation of other medications, like steroids, which result in intolerable side effects to kids. The other major benefit of canakinumab is that it is given by a once-monthly injection, which is easy to tolerate in the young children who need it, some as young as 2 years old. The comparator medication for SJIA requires a daily, excruciatingly painful injection which can be extremely stressful, or even impossible for families of young children to administer.
What is our expected outcome?
BC PharmaCare will fund this therapy - at least on a case-by-case basis - for the small number of children in BC who urgently need it. For kids living with SJIA, this means thriving in the classroom and playing sports outdoors, rather than being housebound in a wheelchair, completely isolated from all the things that make up a person’s childhood.
The payoff for the healthcare system will be fewer hospitalizations and fewer emergency visits.
How can you get involved?
There are a number of ways people can join our canakinumab Campaign and help spread our message. That is that for some kids with SJIA, access to canakinumab therapy has become a life or death issue.
Sign Our Online Petition
Sign this petition to add your name to our growing campaign and circulate the link to your family, friends and colleagues as we continue to raise awareness.
Write Letters and Emails to Your Local MLA
We are encouraging people to write to their local MLA and tell them that something needs to be done about canakinumab coverage access in BC. Over 200 emails and letters have been sent to-date. We need many more people to participate to make an impact.
If you would like to get involved in our Campaign and write a letter to your local MPLA, you can access our letter template here.
Donate Generously to our Canakinumab Campaign
We sent out letters and emails to our subscribers and supporters throughout May and June telling them about the suffering of children in BC who are being denied access to the medication they need. We are asking for our communities support. Click here if you would like to donate to our cause and support the children of BC living with arthritis.
Tell Your Local Media About our Campaign
Media outlets have been contacted about this issue as we seek to use the power of the media to continue to raise awareness of our campaign.
For some SJIA patients, access to canakinumab therapy has become a life or death issue. Please join us in urging BC PharmaCare to fund this therapy at least on a case-by-case basis. We need your voice to send our message that kids deserve better.
Learn more about this issue: http://cassieandfriends.ca/programs/advocay/2017-bc-election-canukinumab-access/
Contact: firstname.lastname@example.org or 604-617-1382
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