ACE launches first of three new blogs to help you “power up” your arthritis knowledge, get more connected to the community, and learn the latest about health policy and politics affecting our group of chronic diseases.
As Canada’s largest national patient-led organization and provider of evidence-based information and education programming, ACE is always looking for better ways to “power up” Canadians living with arthritis.
As always, we want to know what you think. We encourage you to share feedback and offer topics of interest for future blog posts.
We hope you had a great Arthritis Awareness Month in Canada!
Is your mouth a gateway to getting arthritis?
When Health Canada’s Canadian Institutes of Health Research was created in 1994, I, like many, was puzzled that they included oral health along with musculoskeletal health in the research pillar known as the Institute for Musculoskeletal Health and Arthritis (IMHA). After all, what do researchers trying to solve the thousands of mysteries that make up “arthritis”, a group of over 100 different diseases, have to do with teeth. But were they ever smart to do so; the latest research shows the mouth and the joints are definitely connected.
Innervoice.life is a website dedicated to telling the inspiring stories of athletes describing their journeys to health, discovery and personal victories. Below is an excerpt of the most recent “innervoice” story, featuring ACE President and Founder Cheryl Koehn.
Picture from Innervoice.life
EMOTIONALLY AND SPIRITUALLY
I no longer play competitive volleyball, or any other sport for that matter. But the inner high-performance athlete is alive and well inside of me, and helps me overcome challenges every minute of every day. Not long after I retired from competitive volleyball, I developed severe rheumatoid arthritis (RA), an autoimmune disease that leads to uncontrolled inflammation and joint swelling, immobility and eventual destruction. From the day I was diagnosed, something inside of me said “don’t stop moving, keep trying to do the things you love”. Little did I know, that perspective is what research would prove years later: high intensity exercise in the setting of moderate to severe rheumatoid arthritis is a good thing, as long as you protect your joints from improper movement or stress, or when they are actively inflamed.
I approach my life with rheumatoid arthritis the exact same way I did my competitive sporting life. Emotionally and spiritually, I can be tougher than the toughest times I face. I may not be able to do half of what I used to physically, but I have finely honed team skills that help me in the community development work I lead. I recognise that overcoming a challenge requires thoughtful planning and work, and then more work, before you can “win”. Nothing came easy for me on the volleyball court, and the same is true in life. I know that is very cliché, but clichés exist for a reason; they’re usually true!
Arthritis Consumer Experts’ 10th Annual Arthritis Medications Report Card and Medications Guide: The changing landscapes of reimbursement for arthritis medications in Canada
Arthritis Consumer Experts (ACE) has released its 10th Annual JointHealth™ Arthritis Medications Report Card and Medications Guide – the reliable, quick reference tool to help you evaluate where your province ranks in terms of providing reimbursement for medications to treat inflammatory forms of arthritis.
Commenting on the changing landscape for reimbursement of arthritis medications, ACE President, Cheryl Koehn stated: “Any new pharmaceutical policy that promises to deliver significant drug plan savings must do so without compromising patient safety and efficacy. ACE has also consistently advocated that any drug plan cost savings related to changes in policy that affect arthritis medication reimbursement access should be reinvested back to drug formulary budgets to support the listing of new arthritis medicines and other non-medication related initiatives to improve models of arthritis care such as creating rheumatology nursing billing codes.”
The JointHealth™ Arthritis Medications Report Card and Medications Guide gives you information on the most commonly prescribed medications for inflammatory types of arthritis, such as rheumatoid arthritis, axial spondyloarthritis, psoriatic arthritis or juvenile idiopathic arthritis.
In this JointHealth™ insight, topics covered include:
- The changing landscapes of reimbursement for arthritis medications in Canada
- The federal health department consultation on medication pricing regulations
- The essential drugs program initiative in British Columbia
- The Children and Youth Pharmacare plan in Ontario
- Medication policies and politics in Canada
About the Report Card
Everyday Health featured an article about Cheryl Koehn, Founder and President of Arthritis Consumer Experts. In the article, Cheryl Koehn shares her story to help others with RA learn from the mistakes she made, such as missed symptoms, diagnosis denial, and treatment delays. Below is an excerpt of the Everyday Health feature:
What Rheumatoid Arthritis Taught an Olympic Volleyball Player
Cheryl Koehn, with Molly, an Australian Labradoodle, started Arthritis Consumer Experts to help improve RA education.
Is denial a common response to a rheumatic disease diagnosis? Cheryl Koehn will be the first person to tell you that she had trouble accepting her diagnosis of rheumatoid arthritis (RA). After all, as a teenager, she was already an elite volleyball player, competing with the U.S. Junior National Team. She earned a four-year scholarship at the University of Washington in Seattle. But by age 27, just a few years after playing a competitive sport at a high level, she needed to sit in the handicapped seat on the bus to get to work. “The toughest part of accepting it,” Koehn says, “was that when I began to look into the disease, I didn’t see anyone like me.”
The Lack of Arthritis Education and Awareness
It was this experience that led Koehn to create Arthritis Consumer Experts, a Vancouver-based organization dedicated to helping those with arthritis to increase their health literacy and to understand what they are facing. “I put off treatment for about a year after my diagnosis,” Koehn says. “If my health literacy were much higher then, I probably would have made different choices.”
The Michael Smith Foundation of Health Research and Arthritis Research Canada have partnered to co-develop and host a series of monthly expert-led, beginner-level KT training webinars with the goal of developing a sustainable resource for researchers and trainees to learn knowledge and skills that will enable them to develop KT practice in their work.
Topic: Citizen as KT Agent: Keeping the government informed about research
Speaker: Cheryl Koehn, Founder and President of Arthritis Consumer Experts
Date and time: Friday, April 28, 2017 from 12:00 pm-1:00 pm PDT
Register: Please click here to register for this free webinar
En ce temps des Fêtes, alors que toute l’équipe se penche sur les 17 années passées à servir les Canadiennes et Canadiens touchés par l’arthrite, le comité ACE (Arthritis Consumer Experts) souhaite également partager avec vous les plus récentes informations sur la recherche et souligner nos programmes pour 2017. Vous trouverez donc dans ce numéro du JointHealth™ insight :
- Le message de remerciement tout spécial de la part de Cheryl Koehn, fondatrice et présidente du comité ACE (Arthritis Consumer Experts)
- La revue de toutes les réalisations du comité ACE en 2016
- Une présentation des nouveaux cours Éducation JointHealth™ sur l’arthrite psoriasique et la spondylarthrite ankylosante
- Une nouvelle recherche et étude de cas sur les biosimilaires
- Une explication du concept de « données du monde réel »
« Au nom de tous les membres de l’équipe ACE et des membres de son Conseil consultatif d’experts scientifiques et médicaux et de personnes atteintes d’arthrite, je tiens à vous remercier encore une fois de votre intérêt soutenu, de votre participation généreuse et du soutien que vous apportez à nos travaux. Nous vous souhaitons un joyeux temps des Fêtes et l’amélioration de votre santé en 2017. » – Cheryl Koehn