Arthritis community leaders launch new patient portal to improve patient care in BC
ArthritisBC+Me Portal helps BC patients learn about arthritis programs and resources
A group of BC’s leading arthritis specialists, researchers and patient groups are pleased to announce the launch of the ArthritisBC+Me portal designed to help BC patients learn about arthritis and local programs best suited to their needs. The first of its kind in Canada, the portal represents the commitment of the community partners – Arthritis Consumer Experts, Arthritis Research Canada, Mary Pack Arthritis Program, The Arthritis Society and the BC Society of Rheumatologists – to making arthritis information and services more accessible to the estimated 1 in 5 British Columbians who are living with arthritis. Continue reading →
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!
Au Canada, septembre est le mois de sensibilisation à l’arthrite. Pour le souligner, le comité ACE lance une campagne sur Twitter : #ArthritisMadLibs
La campagne #ArthritisMadLibs pendant le mois de sensibilisation à l’arthrite : une occasion de réécrire l’histoire du patient arthritique, un mot à la fois.
Le comité ACE (Arthritis Consumer Experts) souligne le mois de sensibilisation à l’arthrite en lançant une campagne sur Twitter : #ArthritisMadLibs. L’objectif est d’aider les autres à comprendre l’impact de l’arthrite et à prendre des décisions éclairées à propos du développement de nouveaux programmes sur l’arthrite destinés autant aux patients qu’aux fournisseurs de soins.
Mad Libs est un jeu de mots dans lequel certains mots essentiels à une phrase sont laissés en blanc pour que le joueur puisse y substituer ses propres mots. Comme nous en apprenons toujours grâce aux sondages réalisés chez les patients arthritiques à travers le monde, la communication est un élément essentiel de la relation entre les patients et leurs médecins, rhumatologues, infirmières, pharmaciens, amis, collègues et chercheurs. La campagne #ArthritisMadLibs est l’occasion de réécrire l’histoire du patient arthritique – un mot à la fois.
Pendant le mois de sensibilisation à l’arthrite, le comité ACE publiera quotidiennement sur Twitter des micromessages de jeu Mad Libs sur 5 thèmes différents : les patients, le travail, la famille et les amis, les soins de santé et les animaux. Pour y participer, suivez le mot-clic #ArthritisMadLibs sur notre compte Twitter @ACEJointHealth. Si vous n’avez pas de compte Twitter, mais que vous désirez tout de même participer au jeu, suivez notre fil Twitter sur le site Web (www.jointhealth.org) et faites parvenir vos réponses par courriel à email@example.com. Pour alimenter la campagne, aimez, retweetez et répondez sur Twitter. Le Réseau de diffusion sur l’arthrite (www.arthritisbroadcastnetwork.org) offrira chaque semaine un résumé Mad Libs !
#ArthritisMadLibs is a chance to re-write the arthritis patient story during Arthritis Awareness Month – one word at a time.
Arthritis Consumer Experts (ACE) is celebrating Arthritis Awareness Month with the #ArthritisMadLibs Twitter Campaign. The goal is to help others understand the impact of arthritis and make informed decisions about the development of new arthritis programs that will benefit patients and their caregivers.
Mad Libs is a word game where key words in a sentence are left intentionally blank for others to substitute with their own words. As we continue to learn from the global arthritis patient surveys, communications is critical between patients and their doctors, rheumatologists, nurses, pharmacists, friends, colleagues and researchers. #ArthritisMadLibs is a chance to re-write the arthritis patient story – one word at a time.
During Arthritis Awareness Month, ACE will be tweeting daily with 5 themed Mad Libs. The themes are patients, work, family and friends, healthcare professionals, and animals. To participate, please follow hashtag #ArthritisMadLibs on our Twitter account @ACEJointHealth. If you do not have a Twitter account but would like to participate, you can follow our Twitter feed on the Arthritis Consumer Experts website (www.jointhealth.org) and email your answers to firstname.lastname@example.org. To drive the campaign, please like, retweet, and reply on Twitter. Arthritis Broadcast Network will be providing a weekly summary of the Mad Libs.
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.
From this year’s EULAR annual conference comes major news for people living with spondyloarthritis (SpA). Based on recommendations from a task force of European and North American patients, rheumatologists, dermatologists, and health professionals, new treat-to-target (T2T) guidelines for SpA were announced that emphasize the importance to set a target in shared decision making between a specialist and patient and carefully monitor the disease in order to improve a patient’s health outcome.
“The T2T recommendations are following the principle that you have to define a target you want to reach and adapt management to reach this target. This is independent of the treatment you use to reach the target,” said Professor Desiree van der Hejde, a professor at Leiden University Medical Centre in the Netherlands. Continue reading →
ACE is attending this year’s European League Against Rheumatism (EULAR) annual congress in Madrid. The city is currently experiencing above normal temperatures with highs near 40°C and the rheumatology topics inside the convention centre are equally hot. Our first dispatch from the meeting looks at the launch of the “Don’t Delay, Connect Today” early intervention campaign. At a joint session for patients, clinicians, and health professionals, attendees heard how all three groups can contribute to the early diagnosis and treatment of rheumatic diseases.
Commenting on the campaign, Cheryl Koehn, ACE President said: “This campaign, by our colleagues in the European Union, neatly parallels the work the arthritis community in Canada has undertaken through the models care initiatives of the Arthritis Alliance of Canada where we define early identification of inflammatory arthritis and access to care as a key element.”
The EULAR campaign will encourage patients with typical arthritis symptoms to take action and consult their doctors as soon as possible.
At a presentation on the campaign, John Church, CEO of Arthritis Ireland, explained: “With the development of powerful biologic medications, improvements in care pathways for patients and very effective self-care options, early diagnosis and intervention can lead to significant improvement in lifestyle, physical movements, increased well-being, and work force participation.”
Arthritis Consumer Experts participated in the International Foundation for Autoimmune Arthritis’ May 20 World Autoimmune/Autoinflammatory Arthritis Day “virtual” race. The event saw dozens of nonprofits, advocates, and experts from around the world come together to provide educational and awareness information to patients, their supporters, and the general public.
The event reached 1,000’s of patients and supporters in 62 countries around the world, but the awareness doesn’t stop with the end of this event.
The US Arthritis Foundation states that with autoimmune and inflammatory types of arthritis, early diagnosis and aggressive treatment is critical. In addition, slowing disease activity can help minimize or even prevent permanent joint damage. The American College of Rheumatology & EULAR – European League Against Rheumatism work hard to keep treatment guidelines up to date in the United States. In Canada, Health Canada and the Canadian Rheumatology Association work together to ensure Canadians living with arthritis get the healthcare they need. All progression of these diseases is permanent and irreversible – so early intervention is necessary, not only to avoid unnecessary damage and disability, but to avoid overburdening an already exhausted healthcare system (regardless of country) that long term disability healthcare costs would add to the problems.
Arthritis Consumer Experts is honoured to be crowned one of #WAAD17’s Nonprofit Race Team winner and be ranked beside other patient organizations. Here is a list of this year’s winners: Continue reading →
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.”