This year has proven to be challenging for many people living with rheumatic diseases and our summer plans have shifted to activities close to home. We continue to keep busy in contributing patient perspectives to research, health policy and education. We hope this edition of our newsletter provides opportunities to get involved and stay informed.
Looking forward, September is Arthritis Awareness Month and we have some special activities planned. Enjoy the rest of the summer!
What have we been up to?
Patient input for filgotinib for Rheumatoid Arthritis – Do you live with Rheumatoid Arthritis? We are looking for your input to help us develop a patient input submission for filgotinib for Rheumatoid Arthritis (RA). We want to hear your thoughts on the impact of RA on your life and your experiences with current treatments. Take our survey today!
Webinar on patient engagement in COVID-19 research – CAPA Board member, Emily Sirotich, will be speaking at an upcoming webinar on Prioritizing Patient Engagement and Inclusion of Patient-Generated Covid-19 Data. Emily is the co-lead of the patient engagement activities with the Global Rheumatology Alliance (GRA) and will be speaking about how patients were embedded in all aspects of the initiative. Register for the webinar today!
Submission on drug pricing changes – Patented Medicines and Pricing Review Board regulates the price of patented medicines in Canada. They are reviewing their approach to excessive drug pricing and sought public input on an updated version of the guidelines. We developed a second submission that is now available on the website.
Patient-led COVID-19 research – CAPA Board Member Emily Sirotich, led the development of this article on the development of a global COVID-19 patient experience survey through the Global Rheumatology Alliance (GRA). The team has also developed plain language summaries for patients and the general public. Visit their website for more information about the initiative and results to date.
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!
Test out the JIA Option Map – Are you a teen or parent of a teenager living with Juvenile Idiopathic Arthritis? 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!
Masks for Municipalities – Many people with rheumatic diseases take medicines that suppress our immune systems and are taking precautions to protect ourselves against COVID-19 like wearing non-medical masks. Many municipalities have taken steps to mandate the use of masks however some have not. Masks for Municipalities has developed letter templates to send local councilors and local public health authorities to advocate for the mandatory use of masks. Make a difference and consider sending these letters today!
How is COVID-19 affecting youth with chronic pain? Canadians aged 8 to 18 who live with chronic pain are invited to share their experiences with researchers. To participate, you are asked to complete a survey that should take about 30 minutes of your time. Learn more by visiting our website or the study website.
One-time COVID-19 benefit for people with disabilities – The Government of Canada announced a one-time $600 payment in recognition of the additional expenses faced by persons with disabilities during the COVID-19 pandemic. To learn more about the benefit, visit the Canada Revenue Agency website.
Ontario Patient Guide to Chronic Pain – Health Quality Ontario (HQO) has recently published their quality standard relating to chronic pain. It includes a Patient Guide which provides resources for pain management such as telling your chronic pain story, setting goals, staying active and medications. Access the quality standard and patient guide on the HQO website today!
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.