A time to give thanks, reflect on the past, and look forward to the future
“’Tis the season” when our thoughts turn to sharing, caring and remembering; a perfect time to thank all of Arthritis Consumer Experts’ members, subscribers, research partners and supporters for their ongoing engagement and support. Together, we remain committed to helping people living with arthritis across Canada through research-based information and education.
“When you help a person living with arthritis, you are passing on the message that “you are not alone, we are with you, don’t be afraid.” That message needs to be shared not just during the holidays, but throughout the year.
Today, arthritis is Canada’s most prevalent disease and it’s far more serious than most people realize. Approximately six million adults – one in five – have doctor-diagnosed arthritis. Two-thirds are under the age of 65. Arthritis and musculoskeletal conditions are the leading cause of work disability in Canada. In other words, we are a “big deal” to the health care system and to society.
In 2019, ACE will remain focussed on helping all Canadians living, playing, working and raising families with rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, osteoarthritis and the many other forms of the disease. As it has for the past 20 years, our work will reflect your needs and aspirations. As Canada’s largest and longest running patient-led arthritis organization, we will continue to fight for the rights of people living with the disease; to work with healthcare professionals and governments to develop services and policies that reflect a world as seen through our eyes and experiences; to inform the implementation of models of care to better help patients like us in their disease journeys; and to volunteer and work side-by-side with Canada’s brightest arthritis researchers and knowledge translators.
Over the past two weeks, you’ve graciously shared your wishes as part of ACE’s #MyArthritisWishList social media campaign – sincerest thanks for your participation in this fun and inspiring campaign. Your wishes remind us that when you live with arthritis, that means “every day, all day.” For many of us there are days with no break from pain, stiffness, depression, relationship challenges; the list is long. Yet, despite it all, we rise above from a deep reservoir of resilience.
“The worldwide arthritis community is my hero.”
Every day, I’m constantly inspired by our arthritis community, made up of people who are brave, funny, brilliant, insightful, industrious, and so many other wonderful qualities. People trying to be all that they can be, while also trying to kick arthritis to the curb. The worldwide arthritis community is my hero.
On behalf of everyone at ACE, I wish you joy and peace this holiday season.
Sincerely Cheryl Koehn Person with rheumatoid arthritis Founder and President of Arthritis Consumer Experts
Arthritis Consumer Experts’ Year in Review
In 2018, Arthritis Consumer Experts (ACE) worked to improve the lives of people living with arthritis through education, empowerment and advocacy. With help from the arthritis patient community, healthcare professionals, researchers and partner organizations, ACE submitted patient inputs to CADTH and provincial drug plans, participated in conferences, workshops and webinars, launched JointHealth™ Education Advanced Therapies, provided updates from the American College of Rheumatology and European League Against Rheumatism annual meetings, and advocated on behalf of our community with public and private health policymakers.
Thank you to our members and subscribers for making 2018 one of the best years yet! Here are the monthly highlights from this year and some holiday tipsto get you through the rest of the year.
Do you want to travel pain-free? Do you wish there were more ways to help people living with arthritis? Share your wish list with us this holiday season!
For this year’s holiday campaign, Arthritis Consumer Experts (ACE) is asking you to share your arthritis wish list using our campaign hashtag #MyArthritisWishList. ACE will do the same, and hope that through continued community sharing, research and medical advances are possible. Here are a few wishes from last week:
“I wish my family doctor would make arthritis resources available in the waiting room.” – ACE Subscriber, #MyArthritisWishList
“My daughter lives with rheumatoid arthritis and buses to school every day. She gets dirty looks when she asks for a seat. I wish people understood that arthritis is an invisible disease.” – Concerned mother, #MyArthritisWishList
To participate in the #MyArthritisWishList campaign, please:
Send an email to email@example.com and tell us your arthritis wish or wishes
Share your wish on our Facebook or Twitter and include the hashtag #MyArthritisWishList
Share, like, and comment on #MyArthritisWishList posts
We will provide a #MyArthritisWishList summary on January 8, 2019, and promise to use it as ACE’s guiding light for our advocacy, research and information programming over the next year.
Here’s to speaking out and working together to make everyone’s arthritis wishes come true!
Do you have moderate to severe rheumatoid arthritis? We need your valuable input.
The Common Drug Review (CDR) is currently welcoming patients and their caregivers to provide input to patient organizations on the manufacturer’s submission for baricitinib (Olumiant®) for moderate to severe rheumatoid arthritis.
The CDR is part of the Canadian Agency for Drugs and Technologies in Health (CADTH). The CDR conducts objective, rigorous reviews of the clinical and cost effectiveness of drugs, and provides formulary listing recommendations to the publicly funded drug plans in Canada (except Quebec).
To help them make their recommendations, the CDR accepts input from patient organizations and groups, like Arthritis Consumer Experts (ACE). Because patient input is vitally important to government decision-making about medications, we would like to gather your views and share them with the CDR.
If you live with rheumatoid arthritis or care for someone with rheumatoid arthritis, please send us your input by Wednesday, January 16, 2019, so that we may make a submission by the January 18th deadline. Your input will be anonymous.
Please submit your input by completing the questionnaire below or contact us at firstname.lastname@example.org to provide your input or arrange for a phone interview at 604-974-1366.
Arthritis is the most common cause of work disability in Canada, resulting in both poor quality of life and workplace limitations. ACE members have told us about the challenge of managing workplace responsibilities while managing their disease, including symptoms such as pain, fatigue, and stiffness, often with a gradual loss of physical function.
According to Statistics Canada, the estimated annual cost of workplace disability from arthritis and musculoskeletal conditions is $13.6 billion. Studies have also shown that many people diagnosed with rheumatoid arthritis (RA) are forced to leave the workforce prematurely and earn less than those living without the disease.
This issue of JointHealth™ insight covers the important topic of arthritis in the workplace, and includes:
A discussion on the 2018 winners of Canada’s Best Workplaces for Employees Living with Arthritis award: The Government of Yukon and Université de Montréal.
A look at the impact of arthritis on the Canadian work force, and common challenges faced by employees with arthritis.
A special interview with Dr. Lacaille about her online education program, Making it Work™. The program is designed to help people with inflammatory arthritis deal with employment issues related to their disease.
RSVP by November 23! Register for this free event to hear and learn from inspirational women living with arthritis and leading health professionals!
Event date: November 26, 2018 Location:
The Westin Bayshore (Salon Ballroom D&E)
1601 Bayshore Drive,
Vancouver V6G 2V4 Free Registration:ramattersatwork.eventbrite.com Please RSVP by November 23, 2018.
300,000 Canadians live with rheumatoid arthritis (RA), and women are affected two to three times more often than men. For many people living with RA, career continuation and advancement can seem out of reach.
To help illuminate the accessibility of career progression for people with chronic diseases like RA, Women in Biz Network and Eli Lily Canada are launching a nationwide series of empowering events called RA Matters at Work.
Join them in an evening of lively discussion among a community of inspirational women living with arthritis. Speakers will share stories of difficulty and triumph while thriving in the workplace, and challenge the negative beliefs and self-doubt associated with living and working with a chronic disease.
Come learn from experts in rheumatology about advances in preventing work disability for people with inflammatory arthritis. The event will be moderated by ACE founder and president, Cheryl Koehn. Panelists include:
Dr. Diane Lacaille – Associate Scientific Director and Senior Research Scientist of Rheumatology, Arthritis Research Canada
Ms. Spencer O’Brien – Canadian Olympic Snowboarder, 2016 X Games Gold Medalist, 2 x World Champion, Olympian, person living with RA
Ms. Maya Joshi – Program coordinator, Arthritis Consumer Experts
Ms. Flora To-Miles – Managing Editor of Occupational Therapy Now, The Canadian Association of Occupational Therapists
Ms. Alison Stewart – Registered Rehabilitation Professional, Arthritis Research Canada Making It Work Research-Practice Program
The International Association for the Study of Pain defines pain as “an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage”.
Pain is your body’s warning signal, letting you know that something is wrong in your body. When part of your body is injured or damaged, chemical signals are released that travel from nerve system cells (called neurons) to your brain where they are recognized as pain.
The future of arthritis care and the next generation of arthritis specialists
The Arthritis Alliance of Canada has looked carefully at how patients with arthritis receive timely diagnosis and treatment. Central to ensuring timely care is making sure there are adequate numbers of rheumatologists for making an early diagnosis and starting appropriate treatment. In 2015, the Canadian Rheumatology Association conducted a national workforce survey of rheumatologists across Canada. The survey found there is a current shortage of rheumatologists across the country that may worsen over the next 10 years because a third of the workforce reported plans to retire in the near future. This will occur at the same time as an expected increase in the number of arthritis patients within the next generation. Continue reading →
ACE is attending this week’s American College of Rheumatology/Association of Rheumatology Health Professionals 2018 Annual Meeting, the largest international gathering of arthritis researchers, clinicians, academics, patient advocates and arthritis health professionals. Here are some of today’s highlights:
Improving osteoarthritis management
There are currently more than 4.4 million Canadians living with osteoarthritis (OA). Within a generation (in 30 years), more than 10 million (or one in four) Canadians are expected to have OA. A 2017 study, “Productivity costs of work loss associated with osteoarthritis in Canada from 2010 to 2013,” found the rising rates of OA will cost the Canadian economy an estimated $17.5 billion a year in lost productivity by 2031 as the disease forces greater numbers of people to stop working or work less.
ACE and other members of the Arthritis Alliance of Canada have helped raise awareness with health care policy makers that OA is the leading cause of disability in older adults. One of Canada’s leading osteoarthritis researchers, Dr. Gillian Hawker, Sir John and Lady Eaton Professor and Chair of Medicine, Faculty of Medicine, University of Toronto has stated: “the highest rates of OA are increasing fastest among young people (20-59 years), due largely to childhood obesity and knee injury. While effective therapies exist, the high prevalence of comorbidity in people with OA makes management challenging (as many of 90% of people with OA have at least one additional chronic condition – most often diabetes, heart disease and high blood pressure).” Continue reading →
This year’s ACR/ARHP Annual Meeting will include 450 educational sessions. More than 700 speakers hailing from more than 20 countries will present as many as 3,000 abstracts to gain firsthand knowledge and access to new scientific and clinical findings.
Session topics will include newly proposed treatments for systemic lupus erythematosus and osteoarthritis, updated classification criteria for large vessel vasculitis and a look at current controversies regarding arthritis diseases and bone. Continue reading →
After its fourth annual search across Canada, Arthritis Consumer Experts (ACE) today announced the winners of Canada’s Best Workplaces for Employees Living with Arthritis award: the Government of Yukon and Université de Montréal.
ACE is highly supportive of Canadian employers’ efforts to develop policies to ensure high quality health benefits and flexible work arrangements for Canadian workers living with arthritis. For workers with chronic diseases such as arthritis, the challenge involves balancing the demands of managing their disease and of working ‘around’ symptoms such as daily pain, fatigue, joint dysfunction and immobility.
“Arthritis and musculoskeletal conditions are the leading cause of work disability in Canada,” said Cheryl Koehn, Founder and President, Arthritis Consumer Experts. “Managing challenges at work is an important element of disease management for employees living with arthritis. We’re calling on all plan sponsors in Canada to look carefully at their health benefit plans from the perspective of employees living with arthritis.”
Based on workplace insights shared by employees and company managers, the Government of Yukon and Université de Montréal stood out for their supportive work environments highlighted by chronic disease awareness, high quality benefits, wellness programs and prevention practices.
“Supporting all our employees to fully participate in the workplace makes for a more engaged workforce and ultimately better service to the Yukon public. That is why the health, safety and wellbeing of our employees is of paramount importance. We provide flexible working hours, a robust benefits program, and workplace accommodations to help our employees safely stay at work and maintain a healthy work-life balance,” said Ms. Pamela Muir, Public Service Commissioner, the Government of Yukon. Continue reading →