COVID-19 and you: adjusting to a new reality

This new decade has quickly set us off our usual routines with the COVID-19 pandemic remaining front and centre. It has affected every part of our lives with social isolation from family and friends, lay-offs, changes at work, and children not attending school. For these reasons, this monthly update is focused on providing resources and other support to help navigate through these difficult times.

What have we been up to?

Updated COVID-19 web page – We have been regularly updating the COVID-19 web page on our website with new information. We have included new information on changes to public drug plans and new links to reliable information. The resource has also been medically reviewed by Dr. Carter Thorne, a rheumatologist and respected member of the medical community. Visit the COVID-19 information resources to stay up to date!

Resource on government drug plans – Many people with arthritis take many medications and rely on drug insurance to reimburse medication costs. If you have lost your job due to the pandemic, you will need to quickly learn about your options for reimbursement through government drug plans (or public drug plans). To help you navigate the public drug plans in each province, we have developed a resource to provide basic information and where to find more information. Visit our website to learn more about your options.

Raising awareness about hydroxychloroquine (Plaquenil) – CAPA joined forces with key partners to draft a letter to the Minister of Health outlining concerns regarding on-going access to hydroxychloroquine (Plaquenil). Many people with rheumatic diseases, including Lupus, Rheumatoid Arthritis, and Sjogren’s Disease, have had difficulties in accessing hydroxychloroquine at pharmacies across the country. We are monitoring the situation regularly and you can report any difficulties in accessing hydroxychloroquine or other medications by completing this short survey. Ce sondage est aussi disponible en français.

19 Global Rheumatology Alliance – In response to the COVID-19 pandemic, a global research team was created to study COVID-19 infections and patient experiences during the pandemic. CAPA’s newest Board member, Emily Sirotich, joined the team and is working collaboratively with patient partners and leaders from across the globe. Learn more about this initiative by visiting the group’s website and by subcribing to their mailing list.

Join our Twitter chat on May 9! With the pandemic now officially in its seventh week, the days of physical distancing and social isolation are getting long. To lighten the mood, we are hosting our next Twitter chat on May 9 at 1 p.m. EDT with a focus on #COVIDArthritis. Pencil it into your calendar today!

Get Involved!

COVID-19 Patient Experience survey – The COVID-19 Global Rheumatology Alliance is calling on people 18 years of age and older with rheumatic diseases, and parents of children with rheumatic diseases to participate in a survey to learn how best to prevent or treat COVID-19. You are eligible to participate if you live with or without COVID-19 infection. Share your perspective and take the survey today!

Share your input on #ChronicPain – The Canadian Pain Task Force is consulting Canadians and wants to understand your experiences of living with chronic pain. The deadline for the online consultation has been extended to May 29. Anyone with an interest in pain is encouraged to share their input. Feel free to share on social media with the hashtag #TakingActionOnPain!

UNIFIED COVID-19 study – Researchers at the University of British Columbia want to better understand how COVID-19 has affected people living with rheumatic conditions. You may qualify for the study if you are over 18, have been diagnosed with rheumatic disease and can communicate in English. Understanding these challenges will help doctors and decision makers make care better during the COVID-19 pandemic and beyond. Learn more about the study by visiting their website!

Survey on pan-Canadian Pharmaceutical Alliance (pCPA) – Thee pCPA does joint provincial, territorial and federal negotiations for medications to create value in publicly funded drug programs. An evaluation is underway to understand perspectives on getting access to medications and they are seeking input from patients and the public. Complete the survey to share your experiences in accessing medications!

Research study on chronic pain during the pandemic – Have you been in pain for more than 3 months and live in Canada? A team of researchers wants to learn more about the impact of the COVID-19 pandemic on your pain, its treatment and your well-being. By taking the survey, you will be entered into a draw to win one of 10 prepaid Visa® $100 gift cards. Le sondage est aussi disponible en français!

How are you coping? You are invited to take part in a research study aiming to better understand the psychological, social and financial impacts of the COVID-19 outbreak. This study involves completing an online survey that is completely confidential. Learn more about the study and access the on-line survey by visiting this website.

Stay Informed!

Alberta Biosimilars Initiative postponed – In light of the pandemic, the Government of Alberta has delayed the Alberta Biosimilars Initiative where there will be changes to reimbursing some biologic medications for adult patients on government-sponsored drug plans. The initiative has been postponed to January 15, 2021, and from this new date, government-sponsored drug plans will no longer reimburse the originator biologics of Enbrel and Remicade.

Webinar on mental health – The Canadian Spondylitis Association (CSA) is hosting a webinar on Chronic Disease Distress (mental health) and invites you to attend. Join registered psychologist, Dr. Dayna Lee-Baggley to learn more including how the COVID-19 pandemic affects depression and anxiety. Registration information can be found on the CSA website.

Clinical trials happening globally to halt COVID-19 – Want to learn how the scientific community is trying to address the COVID-19 pandemic? Read this article in the National Post to find out what is happening in research and clinical trials. The article was written by Clinical Trials Ontario and they have compiled a list of COVID-19 resources and updates.

Coronavirus: The risks to essential workers with hidden health conditions – Dr. Arif Jetha wrote this important article on the risks to essential workers with hidden health conditions throughout the pandemic. CAPA was quoted in the article indicating that the pandemic is “an opportunity for employers to build credibility with their employees…” We have worked with Dr. Arif Jetha on developing workplace resources for people with arthritis.

Website, Facebook, Twitter & YouTube – Our website, Facebook page, Twitter account and YouTube channel are updated regularly with new information. A number of CAPA resources are available in English, French, Spanish, and Chinese. Don’t forget to follow us on Facebook, Twitter and YouTube to keep up to date on the latest arthritis and advocacy information!