Get Ready to Speak Out about Arthritis
September is Arthritis month so get ready to speak out about arthritis! Arthritis month is all about educating everyone and anyone about the impact of arthritis on you and your family. Speak out like CAPA President Linda Wilhelm did with her local Member of Parliament or share how arthritis impacts your life like Board Member Nathalie Robertson did in her article in Canadian Family.

Going Global with the Arthritis Patient Charter @ EULAR

CAPA Board Member, Dawn Richards presented about the development and use of a CanadianArthritis Patient Charter at the annual European League against Rheumatism (EULAR) meeting held in London, United Kingdom. She also highlighted the findings of the survey we sent you in May about how you have used the Charter. Read more about it here!

Updating the Rheumatoid Arthritis Treatment Guidelines

The Canadian Rheumatology Association (CRA) is updating their recommendations for the treatment of Rheumatoid Arthritis (RA). The recommendations will be updated to reflect the best available evidence and include an important new element – patient preferences. Learn more about the project here…

The Stress of Pregnancy for a Woman with Rheumatoid Arthritis
Pregnancy is supposed to be a time of  joy and anticipation. But when you have a chronic illness like arthritis, it can be a time of worry and concern. CAPA Board Member, Laurie Proulx, wrote an article for The Mighty about the concerns surrounding medication safety during pregnancy – a key finding from the CAPA pregnancy and parenting survey. Almost 90% of survey respondents indicated they needed more information about medication safety during pregnancy. Read her article and share it far and wide!

Get Involved!

Make Your Voice Heard – It’s not too late to speak to your local Member of Parliament to make them aware of arthritis and the burden it creates for people who live with it, their families and caregivers. A letter template and talking points are available on the CAPA website as part of the Make Your Voice Heard campaign that we launched in the Spring. CAPA Board Members have used these templates and talking points when contacting and meeting their elected officials. Anyone can be an advocate!

Study investigating Cimzia during pregnancy – UCB BioSciences is conducting a study to determine if Cimzia® crosses from the mother through the placenta to the infant. If you are pregnant and you and your physician have decided to start or continue treatment with Cimzia®, you can learn more by visiting the CRIB Study Page or by completing the Pre-Screening Questionnaire to see if you qualify. For more information, you can also call the Research Coordination Center at 877-413-4322.

Looking for Research Ambassadors –  The Institute of Musculoskeletal Health and Arthritis (IMHA) of the Canadian Institutes of Health Research (CIHR) is seeking applications for Research Ambassadors. These individuals are members of the public who live with the condition or who are advocates for those living with such conditions. To learn more about the application process and the responsibilities of Research Ambassadors, read the notice on the IMHA-CIHR website.

What have we been up to ?

 

A journey to diagnosis and acceptance – CAPA Board Member, Nathalie Robertson, explains her diagnosis and journey with Rheumatoid Arthritis in an articlein the Ottawa Community News. Robertson noted that diagnosis “was a like a big black hole” and that she lacked information about the disease. Share your issues with us so we can better advocate for you!Pregnancy & Parenting with Arthritis project – We continue to work to inform stakeholders and our partners about the results of the pregnancy and parenting with arthritis survey. The project was highlighted on RheumatoidArthritis.net with many thanks to one of our partners, Mariah Zebrowski Leach. Soon we’ll be developing the resource on this very important topic – contact us if you’d like to be involved somehow!

Expansion of Reference-Based Pricing in BC has begun – CAPA is a member of the British Columbia-based Better Pharmacare Coalition (BPC) and Board Member, Don Mohoruk, is an active partner in their advocacy efforts. BPC continues to advocate for the needs of patients particularly in relation to the expansion of the reference-based pricing program in BC. Learn how this program affects you by reading this important article on the BPC website.

Drug review submissions – CAPA has continued to provide input to the review of drugs by publicly funded drug plans such as CADTH and British Columbia Pharmacare. Read CAPA’s submissions for a biosimilar of Etanercept in the treatment of Ankylosing Spondylitis and Rheumatoid Arthritis.

Tools for partnering with patients in health research – CAPA Board Member, Annette McKinnon, has been involved in developing tools for partnering with patients in health research. Some tools focus on helping the patient when initially discussing the project with the Principal Investigator and other tools are available to assist the researcher in orienting the patient to their project. If you’re involved as a patient partner in research, you won’t want to miss reading this important resource! 

 

Stay Informed!

 

Health Canada Product Watch – Health Canada keeps the public informed about advisories and warnings concerning prescription medications in their Health Product InfoWatch. Read the latest summary on their website including one on Proton Pump Inhibitors. Stay informed about the medications prescribed to you by subscribing to MedEffect Canada here!

Reaching out with Arthritis Research (ROAR) – Become an active partner in your care and learn more about the latest in arthritis research by attending the Reaching out with Arthritis Research (ROAR) event on October 1st. Topics to be discussed include: cardiovascular risk in rheumatoid arthritis, dietary considerations, employment issues and much more! You can attend in person in Vancouver or participate through a webcast. Don’t delay – register now!

Stay informed about drug shortages – Did you know that pharmaceutical companies report on active drug shortages to the public? Keep on top of your medications by subscribing to the notifications of drug shortages so you aren’t caught by surprise the next time you visit the pharmacy! 

Plain language summaries of research –  We have a research page on our website which contains a lot of great information about how patients can be involved in arthritis research as collaborators and partners. We are beginning to add information highlighting ongoing projects that we have supported. Read the first plain language summary from Dr. Daniela Ardelan where her team is investigating the immune and genetic influences of JIA and RA.

Website, Facebook & Twitter- Our website, Facebook page and Twitter account are updated regularly with new information. Don’t forget to follow us on Facebook and Twitter to keep up to date on the latest arthritis and advocacy information.