Twenty Years of Patients Working for Patients:

Message from the President

As 2022 draws to a close, I reflect on the important work the Canadian Arthritis Patient Alliance has done over the past two decades. The vision of Denis Morrice, The Arthritis Society CEO in 2001 and Ann Qualman, a long term Rheumatoid Arthritis patient, who both strived to give people living with arthritis a real voice materialized with the creation of CAPA. Read more in this message from the President!

What have we been up to?

Lupus medication recommendations released – The Canadian Agency for Drugs and Technologies in Health (CADTH) released recommendations that recommend the reimbursement of two medications for Systemic Lupus Erythematosus or Lupus Nephritis. We worked with other patient organizations to develop a response to these recommendation which you can view on our website.

Patient perspectives on real-world evidence – Building on our over ten years of providing patient input to CADTH, we provided feedback and input to CADTH’s “Guidance on Real-World Evidence”. You can read our submission which is now available on our website

Advocating for access to medications in Manitoba – We continue to work to ensure people with arthritis have access to the medications and other treatments needed to manage their health. We joined forces with the Canadian Spondylitis Association and Creaky Joints Canada to raise awareness of the need for treatment options in Manitoba – please consider sharing our message on Twitter!

Supporting new patient partners in research – We launched a new patient partner in research training program and the group has now completed their training modules. Anna Samson is part of the new cohort and reflected on the training experience in a recent Instagram postWe’re so happy the experience was positive for Anna! 

Get Involved!

Take our survey about shared decision-making – Together with the Choice Research Lab and Take a Pain Check Foundation, we will be presenting at the Canadian Rheumatology Association annual meeting about shared decision-making. We want to hear directly from people with arthritis to bring a broader perspective to the conference so please consider sharing your thoughts about shared decision-making by completing this short survey

Survey about ableism in health research – The Canadian Institutes of Health Research (CIHR) is asking people who have a health condition that affects how they interact with the health research funding system to share their views. You can complete the survey online, or you may choose another format found on the CIHR website. 

Stay Informed

New Ontario biosimilars policy – The Ontario government has announced an expansion of the use of biosimilar drug treatments starting on March 31, 2023. We have a number of resources about biosimilars including a tip sheet of questions for your rheumatologist, and videos explaining the differences between originator biologics and biosimilars. Contact your rheumatologist to discuss any specific questions or concerns.

Putting the Pieces Together conference materials – Did you miss one or more of the Putting the Pieces Together conference? You can now access the session recordings on the new Pain Canada YouTube channel. Don’t forget to check out the presentation with CAPA Steering Committee members, Therese Lane and Linda Wilhelm.

Disability Advisory Committee annual report – The Canada Revenue Agency’s Disability Advisory Committee (DAC) released its third annual report on December 2, 2022. It includes ten new recommendations for potential improvements to the Disability Tax Credit and its administration.