David Porte
Board Chair + Parent, Cassie + Friends Society for Children with Juvenile Arthritis & Other Rheumatic Diseases
Juvenile arthritis is the most common cause of chronic disability in Canadian children, but Cassie and Friends is optimistic about a pain free future for kids with rheumatic disease.
Every year, one in 1,000 children in Canada will be diagnosed with juvenile arthritis (JA) and up to 60 percent of them, like my daughter, Cassie, will suffer with uncontrolled and severe disease.
This means, for the most part, she can dance and play like any kid, but will likely rely on long-term, costly immune therapies for her whole life, like the biologics she’s taken since she was two years old.
As a parent, you can’t help but ask — will my child face irreversible joint damage? Will she require surgeries? Will she be able to reach her full potential?
With the rapid introduction of biosimilars (drugs that are very close in structure and function to biologics) for the treatment of JA across Canada, parents also have questions about the use of these new medications for children.
In Canada, there are kids with arthritis who still don’t have access to life-changing medications, and many specialty clinics still can’t get funding for critical equipment and services like ultrasounds, physiotherapy, and nursing. How can I know that the safety and future of my child will be a priority?
Since 2007, Cassie + Friends has raised nearly $3-million for JA research, awareness, connection and support benefiting kids and families across Canada
While we support the efforts of government to select cost-effective treatments for arthritis, we’ll continue to advocate for kids.
That means calling for all kids with JA to have access to medications with appropriate pediatric dosing and best-tolerated administration for their growing bodies. It also means advocating for a clear mandate to be put in place to carefully track the outcomes of children with arthritis taking these new medications.
At Cassie + Friends, we’re more optimistic than ever about a pain-free future for all kids with rheumatic disease. We invite affected youth, families, health care practitioners, educators, and other friends, to help make it a reality.
