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. Continue reading →
Picture taken from the @SickKidsToronto Instagram account
On Friday, patients at the Hospital for Sick Children in Toronto attended a Great Gatsby-themed prom. For many, this was a second chance at a fairy-tale and to experience what they may have missed at their own school.
This year’s prom marks the hospital’s eighth year of hosting this event. Both in-patient and out-patient teens who missed their own school proms due to illness or treatment are invited. For one night, they can forget about their illness and be a normal teenager. The event connects patients to other people who can understand what they’re going through.
In an interview with CTV News Channel Friday, Vanessa Williams, who gets treatment at SickKids for anxiety issues, said: “The SickKids prom allows kids to interact with each other and make new friends and make connections as well. Williams is also a member of the children’s council who helped to plan this year’s prom.
Arthritis Consumer Experts’ 10th Annual Arthritis Medications Report Card and Medications Guide: The changing landscapes of reimbursement for arthritis medications in Canada
Arthritis Consumer Experts (ACE) has released its 10th Annual JointHealth™ Arthritis Medications Report Card and Medications Guide – the reliable, quick reference tool to help you evaluate where your province ranks in terms of providing reimbursement for medications to treat inflammatory forms of arthritis.
Commenting on the changing landscape for reimbursement of arthritis medications, ACE President, Cheryl Koehn stated: “Any new pharmaceutical policy that promises to deliver significant drug plan savings must do so without compromising patient safety and efficacy. ACE has also consistently advocated that any drug plan cost savings related to changes in policy that affect arthritis medication reimbursement access should be reinvested back to drug formulary budgets to support the listing of new arthritis medicines and other non-medication related initiatives to improve models of arthritis care such as creating rheumatology nursing billing codes.”
The JointHealth™ Arthritis Medications Report Card and Medications Guide gives you information on the most commonly prescribed medications for inflammatory types of arthritis, such as rheumatoid arthritis, axial spondyloarthritis, psoriatic arthritis or juvenile idiopathic arthritis.
Join Cassie and Friends for their Scotiabank 5K & Half Marathon Team to raise money for all the kids affected by juvenile arthritis and other rheumatic diseases in BC.
Over the last 10 years, Team Cassie and Friends has laid it all on the course for kids with arthritis. Their team of 100 runners and walkers, from toddlers to grandparents, have transformed the lives of kids and families diagnosed with Juvenile Arthritis and other rheumatic diseases in BC and across Canada.
But, there is still so much more we can do to support and connect families, fund critical research and raise awareness – we hope you’ll join Cassie and Friends! Make a gift or sign up to be a part of their team. Cassie and Friends has created a virtual run for those who are unable to attend the Vancouver event.
Click here to register. Please use charity pin codes (all child registrations will be reimbursed):5K -17CFS5K or Half Marathon– 17CFS21K
Canadian folk artist Maud Lewis is a legend in Nova Scotia and in our eyes, a role model to people living with juvenile arthritis. The story of Maud Lewis came to life on the big screen with Maudie, a biopic released in June. The movie features Sally Hawkins as Lewis and Ethan Hawke as her husband Everett. The film, directed by British filmmaker Aisling Walsh and written by Canadian screenwriter Sherry White, focuses on Lewis’s resilience as an artist, despite hardships. The pictures in this article is from Artsy‘s editorial The Joyous World of Overlooked Canadian Folk Artist Maud Lewis.
Photo from Artsy: Maud Lewis, Oxen in Spring, ca. 1960s. Courtesy of the Art Gallery of Nova Scotia.
Maud Lewis (1903-1970) grew up in the seaside town of Yarmouth, Nova Scotia. She was diagnosed with juvenile arthritis at a young age. Her arthritis left her with a pained and crooked gait. People would make fun of her because she looked and walked different. Her arthritis pain forced her to stay indoors at her parents’ home. It was here that she began to draw.
At this year’s annual EULAR 2017 annual congress, attendees learned about the need for increased collaboration between adult and paediatric rheumatologists to improve outcomes of adults living with active juvenile idiopathic arthritis (JIA).
According to conclusions from a review of more than 50 studies and approximately 3,000 JIA patients, half of adults living with JIA were not receiving adequate treatment, despite the fact that biological have been shown to improve the quality of life in children with JIA, with most of these benefits of treatment in childhood persisting into adulthood.
Presenting the results of her study, Dr. Berit Flato from the rheumatology department at Oslo University Hospital said: “Since 2000, biological and methotrexate have been prescribed earlier in JIA, resulting in increased rates of inactive disease after 1-3 years. Yet, recent reports indicate that only half of adult patients with JIA are on synthetic or biological disease-modifying anti-rheumatic drug (DMARDs).
The inadequate treatment identified in the study partly explains why adults with JIA often experience more pain, poorer health-related quality of life, and lower employment rates.
ACE Founder and President, Chery Koehn, related the study results to the Canadian environment: “The reasons why many adult patients with JIA in Canada fall through this treatment gaps are many. A large factor is the transition of children with JIA from paediatric care to adult care, which often is not as smooth as it should be.”
JIA affects approximately 24,000 children and teens in Canada, making it one of the most common causes of chronic disability in children. JIA can be devastating and comes with high financial, family and societal burdens. Approximately 60% of children will have active disease into childhood. For more information about JIA, please visit Cassie and Friends, the only charity in Canada dedicated 100# to the paediatric rheumatic disease community (Cassie & Friends).