By: Jennifer Wilson
The Cassie and Friends community celebrated a major win for kids and families this past February when the British Columbia Health Ministry granted exceptional access – for the first time ever – to an 11-year old girl living with a potentially life-threatening form of arthritis, Systemic Juvenile Idiopathic Arthritis (SJIA).
Canakinumab is the generic name for Ilaris, a medication that is effective in children living with a rare, painful and potentially life-threatening auto inflammatory disease called Systemic Juvenile Idiopathic Arthritis (SJIA).
Cassie and Friends, a national charity for kids and families affected by all forms of Juvenile Arthritis, first launched their campaign in July 2017 calling for the BC Government to drastically improve the outlook of children with SJIA by allowing reimbursement coverage for canakinumab on a case-by-case basis for the small number of children who need it. Their online petition, created with the help of Arthritis Consumer Experts, grew to nearly 21,000 signatures by December after a Vancouver Island mother brought her own son’s plea for canakinumab access to the media’s attention in December 2017.
While that family has not yet been approved for coverage, Jennifer Wilson, Executive Director, Cassie and Friends Society felt the decision by the BC Health Ministry to grant access to Jaylene Prime will be felt immediately and applauded the decision.
“I am very pleased that Health Minister Adrian Dix and the leadership of the BC PharmaCare Program have listened to our urgent call on behalf of children with SJIA in our province. We recognize that medicines like canakinumab are very costly but we applaud the ministry’s willingness to work with paediatric rheumatology experts and our Society to find a way to provide exceptional reimbursement coverage on a case by case basis in severe cases.”
Cassie and Friends looks forward to continuing to work with the Ministry of Health to ensure the devastation of arthritis in children is appropriately recognized and to ensure the very best outcomes for the children and their families affected by these painful diseases.
Approximately 24,000 children in Canada, or every 3 in 1000, have some form of arthritis or pediatric rheumatic disease, the most common being juvenile idiopathic arthritis (JIA). About 10 percent of those children have a rare and serious subtype called systemic juvenile idiopathic arthritis, or SJIA. “Systemic” means it affects not only the joints but also other parts of the body, including the liver, lungs, and heart.
By: Lene Anderson
Did you know that 25 percent of people who have a serious or life-threatening illness develop posttraumatic stress syndrome (PTSD)? We are building a community to support them.
I am one of the 25 percent. Two years ago, I spent several weeks in the ICU due to complications from the flu. Two weeks of an induced coma on a ventilator was followed by an emergency tracheostomy. It was a very scary month, but I got through it. I left the hospital very grateful to be alive.
And then I discovered that I had PTSD. It took months before the realization hit and I had to fight to get treatment. After six months receiving cognitive processing therapy, I’m happy to report that I’m coping much better.
No one talks about medical PTSD. When you leave the hospital after a stay in the ICU, you do so with referrals for follow-up appointments to check your physical health. But there is no referral for a mental health follow-up. We are left to figure out on our own how to cope with having been so seriously ill, perhaps close to dying and rebuild our lives in the aftermath.
One of the most important factors of coping well with chronic illness is connecting with others who are in the same situation, who know exactly what you’re going through. And that’s why I, along with Laurie Proulx and Kenzie Libbesmeier, have started ICU Warriors. It’s a Facebook group dedicated to creating a community of support for people who live with medical PTSD.
Let’s start talking about it.
If you live with medical PTSD, search for ICU Warriors on Facebook and send us a request to join