Arthritis in the Workplace – Have your Say!

Arthritis affects individuals in many aspects of their lives including the ability to work and contribute in the workplace. As a result, we have developed a survey to help us better understand the workplace challenges faced by people with arthritis, the type and effectiveness of personal and workplace accommodations and the effectiveness of available resources. We would appreciate if you could please take 10-15 minutes to complete this survey – available in English and French – so we better understand the issues facing people with arthritis. Your input will guide the development of workplace tools and our advocacy activities. Have your say and takethe survey now!

 

Arthritis Hackathon

Wondering what a hackathon is all about? A hackathon is where software developers, graphic designers, user interface designers and users collaborate intensely to develop usable software. Read about the experience of CAPA`s very own Annette McKinnon as she participates in her first-ever arthritis hackathon!

Membership Survey Results

In May, we asked for your feedback and guidance about how we’re doing as an organization through a membership survey. We asked why you joined CAPA, how we’re meeting your expectations and the benefits of membership. Learn about the survey results by reading this presentation on the CAPA website!

 
Get Involved!

 

Become a Consumer Reviewer for The Arthritis Society –  Did you know that consumers play a role in deciding what research is funded by The Arthritis Society (TAS)? Many CAPA members have contributed as reviewers and TAS is inviting interested individuals with arthritis to participate in future review panels. Learn abouthow to get involved here…

Heart Pa ♀ n – CAPA is collaborating on a research project regarding coronary artery disease, which is more common in women with inflammatory arthritis. If you are a woman greater than 55 years of age and have been diagnosed with inflammatory arthritis and coronary artery disease, you may qualify to participate in a focus group to inform the development of a web-based health solution for women. Learn how to participate here!

Sign the Petition: Canakinumab Therapy for Systemic Juvenile Idiopathic Arthritis (SJIA) – Canakinumab is a biologic approved for use in children with SJIA. Although it has been recommended for reimbursement by CADTH, the BC government has decided not to list this medication. The issue has recently received the attention of the media because Landen, a 7-year-old child diagnosed with SJIA, was denied access to this medication. CAPA will be writing a letter to the BC Minister of Health about this issue but you can do your part too by signing the petition to convince the B.C. government to list this drug!

What have we been up to?

 

Patients as Teachers – Our President, Linda Wilhelm is involved in the Strategy for Patient-Oriented Research (SPOR) Evidence Alliance. She recently wrote an article for the Alliance’s most recent newsletter entitled Patients Teaching Patients, Researchers, Policy-Makers and Health Care Providers. It outlines how Linda has been engaged in research as a patient partner and advocate over many years.

Creaky Joints Patient Guidelines on Fertility and Family Planning – Creaky Joints, a U.S. based arthritis advocacy organization, has developed patient guidelines for family planning with rheumatic disease. CAPA had the pleasure of reviewing the guidelines and providing our input. Download your copy today! 

Celebrating Patient Solidarity Day – Many CAPA Board Members were active on Twitter to celebrate the International Alliance of Patient Organizations (IAPO) Patient Solidarity Day. The theme was `Power Through Knowledge’ and many people with arthritis showed how they empower themselves and others through knowledge. Check out the conversation on Twitter by searching for hashtag #PSD2017!

Medical Cannabis Tax Submission – In response to the federal government’s proposed tax on medical cannabis, CAPA has joined forces with 12 other patient groups to provide feedback on the proposal. A number of concerns were highlighted including the financial burden on patients requiring medical cannabis for the treatment of pain. Join the conversation on Twitter by using the hashtag #DontTaxMedicine!

Stay Informed!

 

Mother to Baby – We are collaborating with Mother to Baby, a leading authority and trusted source of information on the safety of medications during pregnancy and breastfeeding, in order to bring important, evidence-based information to people with arthritis. They have kindly shared a list of resources for people with arthritis including fact sheets on a number of medications, blog posts, and research publications. This list will be updated every three months to ensure the most recent and accurate information is available to you. Take a look at these resources and get informed! 

Opioid Labelling Updates – Health Canada has released an information updateregarding labeling changes to opioid medications. A number of updates will be made to the product monographs including recommendations of a new daily threshold, limiting the quantity prescribed for acute pain and clarifying warnings for special populations such as pregnant women. Labelling updates will be made by January 2019. 

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

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