Welcome to 2021:

A Message from the CAPA President

 

2020 was a year like no other where our homes have become the focus of our lives, our workplace, a classroom, and our sanctuary. Read the welcoming words from CAPA President, Linda Wilhelm, as she tries to find the positive in our past, present and future. Stay safe and well!

What have we been up to?

 

COVID-19 vaccine decision aid – The Canadian Rheumatology Association developed a decision aid to help people living with autoimmune rheumatic conditions decide whether to take the COVID-19 vaccine. CAPA was fortunate to provide input into the development of the decision aid and it is now available on our website. Get informed about your options today!

COVID-19 vaccine: Letter to public health officials – The National Advisory Committee on Immunization (NACI) issued recommendations on the currently approved COVID-19 vaccines that impact people taking immunosuppressing medications. We were concerned that this recommendation negatively affects our community and did not support patient decision making (please note the recommendations were updated on January 12). As a result, we wrote a letter to NACI and public health officials across Canada to express our concerns. We will continue to work with stakeholders to create resources for people living with rheumatic diseases, and to support research on vaccine safety.

 

CADTH patient input submission for Anakinra & Upadicitinib – Thank you to everyone who completed our survey to share their experiences living with Still’s Disease, Systemic Juvenile Idiopathic Arthritis or Psoriatic Arthritis. We used your feedback to develop a patient input submission for Anakinra (Kineret) and Upadicitinib (Rinvoq) and they are now available on our website. Thank you for participating!

What is health technology assessment? We provided input to Envision Pharma, a medical communications company, as they have developed an infographic on Health Technology Assessment. It provides a plain language explanation of the purpose and approaches to health technology assessment (HTA). Learn more about HTA and what this means to patients!

“With these hands” – Arthritis has inspired artwork by fibre artist, Karen D. Miller. She developed “With these hands” to convey the ability – not the disability – of CAPA Board member Laurie Proulx. Read a few words from the artist about what this piece means to her.

 

 

Get Involved!

 

We need your arthritis-friendly recipes! Many of us are spending a lot of time at home during the COVID-19 pandemic and cooking or baking to pass the time. We are collecting arthritis-friendly recipes and will be compiling the recipes into an on-line cookbook. We only ask that the recipes that are easy to make for people living with arthritis who may have reduced hand, elbow or shoulder function – please consider sharing your favourite recipe today! 

Study on patient preferences – Want to help direct research into patient preferences? Researchers at the University of Calgary are looking to speak with patients and other stakeholders to understand their perspectives through one-on-one interviews about the use of patient preferences in clinical trials. Learn more by visiting this website and consider participating today!

Stay Informed!

 

COVID-19 vaccine webinars – COVID-19 vaccines are a hot topic and a number of webinars are being offered in the coming weeks and months. You may be interested in COVID-19 vaccines for Spondyloarthritis and chronic inflammatory Illnesses and How new vaccines protect against COVID-19. Get informed and consider registering for one of these virtual events!

Patient partnership in research – Check out an upcoming webinar on January 26 with CAPA Board member, Laurie Proulx, and Dr. Karine Toupin April, as they discuss knowledge translation. Laurie and Karine will discuss their approach to knowledge translation that is co-led by a researcher and a patient partner. Register for this webinar today! 

Childhood arthritis webinars – Cassie & Friends has launched a new series of evidence-based virtual education seminars to help families affected by pediatric rheumatic diseases learn how to navigate life with a chronic condition. Webinars are being offered on a range of topics such as physical activity and taking Methotrexate. Visit their website to learn more! 

Website and social media updates – We are regularly updating our websiteFacebookTwitterInstagram 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!