What have we been up to?

Profile of Board member Therese Lane – We have welcomed three new Board members this year including Therese Lane. She is extensively involved with the Chronic Pain Network as a patient partner and the focus of this article about her life journey and contributions to the network. It is truly touching story and it makes me that much prouder to have her on our team. Welcome Therese!

Pain & COVID-19 CBC Interview – Our President, Linda Wilhelm, is a member of the Canadian Pain Task Force and spoke to CBC about the impact of the pandemic on people living with arthritis. She conveyed the challenges of living with pain and how the pandemic adds additional stress, caused drug shortages and difficulties in accessing health care and treatment. Listen to the interview today!

What you should know about COVID-19 drug treatments – You may have heard about potential drug treatments for COVID-19 but it can be hard to understand fact from fiction. The Canadian Agency for Drugs and Technologies developed this resource on what you should know about COVID-19 drug treatments. Our 1st Vice-President Dawn Richards reviewed this handout.

Anesthesia research priorities – As we know all too well, people living with arthritis often need surgery to retain joint function and mobility. CAPA President Linda Wilhelm participated in setting research priorities in anesthesia using her significant lived experience as a veteran of 14 surgeries. Read this article to read about the project and how the patient perspective is front and centre!

The patient as person: an update – CAPA Vice-President Dawn Richards updates the perspective on “The patient as person” in a follow-up article in the British Journal of Sports Medicine. It provides timeless advice for health care systems and providers in interacting with patients. Read the article and see if you can relate to her advice!

COVID-19 web page – We are keeping on top of the latest news about COVID-19 and how this affects people living with arthritis. To stay informed, you can watch our recent video of CAPA Board member, Michael Kuluva, with Dr. Janet Pope. We are also monitoring drug shortages closely so please complete this the short survey if you have any difficulties. Visit the COVID-19 information resources to stay up to date! 

Get Involved!

Introduction to patient engagement in research – Want to learn about how you get involved as a patient partner in research? Look no further than this webinar hosted by CAPA Board members Therese Lane and Janet Gunderson as they share insights about how patients can get involved in research projects. Sign up today!

Test out the JIA Option Map – Are you a teen or parent of a teenager living with JuvenileIdiopathicArthritis? A research team based at the Children’s Hospital of Eastern Ontario want to hear your thoughts on the JIA Option Map, a new web app designed to help you choose ways to manage pain. To learn more, visit our website or the study website to see if you qualify!

UNIFIED COVID-19 study – Researchers at the University of British Columbia want to better understand how COVID-19 has affected people living with rheumatic conditions. Understanding these challenges will help doctors and decision-makers make care better during the COVID-19 pandemic and beyond. Learn more about the study by visiting our website!

Re-name pain catastrophizing! An international research team has launched an important project to solicit patient and healthcare professional views on the term ‘pain catastrophizing’. Pain can be debilitating and stressful however patients have expressed concern with the use of this medical term. Please consider taking the survey to help the team understand how to improve language and communication in medical settings.

Stay Informed!

New CAPA Instagram account! We are engaging our community on many different social media platforms including Twitter and Facebook. We now have an Instagram account where we’re posting information and news regularly. Follow us on our Instagram account today!

Arthritis Society advocacy campaign – The Arthritis Society has launched an e-advocacy campaign calling on federal and provincial governments to work together for people living with arthritis during COVID-19. The campaign calls to address access to medications, wait times for joint replacement surgeries and support for research. Take action today!

Ontario lifts 30 day supply limit on prescription – Effective June 15, 2020, Ontario Drug program recipients can return to filling up to 100-day supply at a time from their pharmacy or dispensing physician. If you’ve lost your job because of the pandemic, you may be interested in learning more public drug plans. Visit our website to learn about your options.

Pso Protect – Pso Protect is a registry to capture outcomes and experiences of people living of psoriasis and psoriatic arthritic patients throughout the COVID-19 pandemic. The purpose of the initiative to rapidly improve the understanding of how factors like medications impact COVID-19 outcomes. Visit the website to learn more!

Website and social media updates – We are regularly updating our website, Facebook, Twitter, Instagram and YouTube channel with new information. Don’t forget to follow us on these social media channels to keep up to date on the latest arthritis and advocacy information!