Our Month and Our Charter

September is an important month for people living with arthritis. It has been designated Arthritis Month by The Arthritis Society in order to bring greater awareness of the disease. As we know all too well, arthritis affects every aspect of our lives. It affects people in the prime of their lives as well as children, and it has a long lasting influence on their lives and the lives of their parents.

It is only fitting that this month we launch the Arthritis Patient Charter.  The Charter states the rights and responsibilities that arthritis patients should expect in their care. The development of the Charter was a grassroots initiative with all groups in the arthritis community working together under CAPA’s leadership. Read more about it on our website.
What have we been up to?

Supporting new patient safety legislation…CAPA’s President, Linda Wilhelm, presented to the Standing Committee on Health to provide the patient perspective regarding the Protecting Canadians from Unsafe Drugs Act (Vanessa’s Law). The transcript from the Standing Committee on Health is now available on-line and for further background information about this new legislation, read through this summary on our website.

Patient input to drug policyWe have continued to provide input to the Canadian Agency for Drugs and Technologies in Health (CADTH) in their reviews of Xeljanzand Actemra for Rheumatoid Arthritis (RA), Cimzia for Ankylosing Spondylitis (AS)  as well as the subsequent entry biologics, Remsima and Inflectra, for AS, RA and Psoriatic Arthritis. We heard directly from patients for the Actemra submission, and incorporated their comments and experiences in to it. Remember that CDEC highly values first hand experience with a drug, so if you have the opportunity in the future, please share with us your experience with the drug under review!

Drug shortages…Health Canada recently asked for public input in terms of their current approach in informing the public of drug shortages.  CAPA provided our inputon the topic including the lack of awareness of the drug shortages website and the need for the active involvement of local pharmacies in notifying patients of shortages. If you aren’t aware of the website already, register on their website to receive notifications of drug shortages. 

Consumer involvement in arthritis research...CAPA Steering Committee members Janet Gunderson and Simone Hughes developed an educational presentation in partnership with the Canadian Arthritis Network (CAN) regarding consumer (i.e. patient) involvement in arthritis research. The resource includes an introduction to the research process, questions to think about when reviewing a grant and the do’s and don’ts of getting involved.

CADTH annual symposium…CAPA Steering Committee member Laurie Proulx attended this year’s Canadian Agency for Drug Technologies in Health symposium on April 7-8 in Gatineau, QC. Read her meeting report here.

Inflammatory Arthritis Models of Care…CAPA President, Linda Wilhelm, has been involved in developing and implementing models of care (MOC) for people living with inflammatory arthritis (IA). The Arthritis Alliance of Canada (AAC) has been collaborating with provincial health ministries across Canada looking at how to incorporate an effective IA MOC into existing programs and measure the improved outcomes. We have had major successes in BC, AB, ON, NB and NL. The Alliance has begun a dialogue in the other jurisdictions and hopefully we will see some activity with the remaining regions in the near future. Read more about it here…

Demanding better transit access in Montreal
CAPA’s second Vice-President, Marie-Eve Veilleux, took part in organizing an important demonstration in Montreal where disabled people demanded better transit access. Read about how it brought greater awareness of accessibility issues here…

Arthritis in your throat?

Yes, that’s right. You can get arthritis in your throat. Read about a patient’s struggle for diagnosis of cricoarytenoid arthritis. Get informed and be on the look out – your life may depend on it. Read more here…

TEAM Photo Project

Starting this September in Arthritis Month, take part in our TEAM Photo Project and share your photos through social media to help raise awareness about arthritis. In September (and beyond), take photos that show how you live life to the fullest despite your disease. Post these to your social media accounts (Twitter, Facebook, Instagram) and include the hashtags: #TEAMphoto #livinglifetothefullest #arthritis.Encourage your friends, family and social media followers to like, retweet and share your photos, to amplify our collective voice in the community. The TEAM Photo Project is open to anyone touched by arthritis: people living with arthritis, family members, friends, doctors, nurses, etc. Stay updated about this initiative on the CAPA website.

Website Update

We’ve added a lot of new content to our website including sections on CAPA Projects and Information and Resources. Visit our website regularly so you can keep yourself up to date on what we’ve been up to. Contact us if you have any thoughts or ideas. We’d love to hear from you!