Please take a few minutes to complete a short survey to help the Canadian Spondylitis Association help you.
A co-morbidity is not a side effect.
A focus of the Canadian Spondylitis Association (CSA) in 2018 will be on highlighting and educating members about co-morbidities that are associated with spondyloarthritis. The CSA are forming partnerships to bring you the education and support that you should have. Individuals are sometimes diagnosed because of a co-morbidity or by a professional outside of rheumatology. In some cases, diagnosis is delayed due to the complexities of spondyloarthritis and its many co-morbidities.
Stand-up to spondyloarthritis! Together we can make a difference. Please take a few minutes of your time to complete a short survey to help the CSA help you.
The CSA will be updating their website with information on co-morbidities and include articles in upcoming newsletters highlighting a co-morbidity.
Thanks to our fans and followers, Arthritis Broadcast Network’s 2018 #CRArthritis Facebook and Twitter Live event reached over 94,205 people to date!
We did it! The Arthritis Broadcast Network (ABN) #CRArthritis Facebook and Twitter Live event at the Canadian Rheumatology Association (CRA) Annual Scientific Meeting and Arthritis Health Professions Association (AHPA) Annual Meeting conducted a total of 39 interviews (7 more than last year) in a little over 48 hours. Thank you to all of our interviewers, interviewees, and online audience who participated in the event. Because of you, the #CRArthritis event have informed and educated over 94,205 people to date. We’d say that’s an unqualified success, and you were a central part of making it happen – thank you!
Want to know what Canada’s leading rheumatologists are thinking? Join us for our #CRArthritis Facebook and Twitter Live event!
Arthritis Consumer Experts hosts the #CRArthritis Facebook and Twitter Live event
Powered by ACE and supported by representatives from the Arthritis Patient Advisory Board of Arthritis Research Canada and the Canadian Spondylitis Association, Arthritis Broadcast Network (ABN) will be interviewing keynote speakers, meeting attendees, patients living with arthritis, and disease experts. We invite you to participate in the Facebook and Twitter Live event. Like, share and retweet the live interviews, send us your comments or questions through Facebook and Twitter during the interviews.
Do you have psoriatic 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 ixekizumab (Taltz) for the treatment of psoriatic 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.
BC PharmaCare is looking for your input on tocilizumab (Actemra™) for the treatment of giant cell arteritis
Tocilizumab (Actemra®) for giant cell arteritis (GCA) is now being considered for coverage under the British Columbia Ministry of Health’s PharmaCare program. By filling out a questionnaire on a website called Your Voice, you can provide feedback about tocilizumab for the treatment of GCA.
You can give input if you are a B.C. resident and have giant cell arteritis, a caregiver to someone with giant cell arteritis, or if your group represents people who live with giant cell arteritis.
If you would like our help in providing your input, you can email us your input at email@example.com or call us at 604-974-1366. We can send it as a patient organization on your behalf. Please provide your input to us by Monday, February 19 so that we may submit the questionnaire in time for the deadline.
The submission deadline is midnight on February 21, 2018. Patients and caregivers may give their input directly through the links below.
Please click here to let BC PharmaCare hear Your Voice. Or, go to the following links:
To view the information sheet for tocilizumab for giant cell arteritis: click here
Participate in the 2018 Winter Olympics and Paralympics as #ArthritisOlympians
Arthritis Consumer Experts (ACE) has created the #ArthritisOlympians campaign to support athletes in the 2018 Winter Olympics and Paralympics games and recognize that people living with arthritis are Olympians in their own sense.
Olympic athletes must train rigorously in preparation for the Games. Beyond training for their specific event, everything from diet, rest and mental health are keys to success. Olympians rely on support from their team, care from medical staff and guidance from coaches to ensure they are prepared for all challenges that may come their way. Arthritis patients use similar practices in their lives. We are #ArthritisOlympians – confronting pain and fatigue with the support of our healthcare team to overcome daily challenges.
The #ArthritisOlympians campaign runs during the 2018 Winter Olympics and Paralympics games from February 9-March 18. Throughout the campaign, we will highlight the parallel ways Olympians, and #ArthritisOlympians manage their health to achieve their personal bests.
Do you have #ArthritisOlympians moments you would like to share? We’d love to hear from you! Connect with us by:
Here’s your chance! ACE will once again be hosting the Arthritis Broadcast Network’s #CRArthritis Facebook and Twitter Live event at the 2018 Canadian Rheumatology Association (CRA) Annual Scientific Meeting and Arthritis Health Professions Association (AHPA) Annual Meeting.
Send us your burning arthritis questions by February 15th so we can ask the experts during the #CRArthritis live broadcast on February 21st to February 23rd. Experts to be interviewed include Canada’s leading rheumatologists, physio and occupational therapists, researchers and patient organization and health charity leaders.
The Arthritis Broadcast Network’s#CRArthritis Facebook and Twitter Live event is powered by ACE and supported by representatives from the Arthritis Patient Advisory Board of Arthritis Research Canada, Canadian Arthritis Patient Alliance, and Canadian Spondylitis Association. Arthritis Broadcast Network is the world’s largest patient-led arthritis news outlet, bringing you the latest information on medical research findings to inspirational stories and life hacks.
Special thanks to the CRA and AHPA for including our event at their annual meetings.
The study will be on the risk of damage to vision related to taking hydroxychloroquine (HCQ) or chloroquine (CQ) in Canadians living with lupus and rheumatoid arthritis.
The research team at Arthritis Research Canada and the University of British Columbia want to do research to:
Accurately determine the risk of damage to vision related to taking HCQ or CQ in Canadians living with systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA)
Provide annual vision testing to approximately 3,000 patients with SLE or RA who have been taking HCQ or CQ for more than 5 years
The research team will use a state-of-the-art vision testing method that can detect any signs of damage to vision at an earlier stage before the damage is irreversible. The researchers need your help in designing this research project. They want your opinion about the best way to invite patients to participate in this study:
The research team will send a letter to the patients who have SLE or RA and have been taking HCQ or CQ for more than 5 years. The letter will ask the patient to ask their doctor (family doctor or rheumatologist) to send a referral to see an ophthalmologist for the vision tests.
The research team contacts the family doctor or rheumatologist directly and requests that the doctor tells their patients with SLE and RA about the study and sends a referral to the ophthalmologist.
Click on this survey link to select your preferred option.
More information about damage to vision related to taking HCQ and CQ
Hydroxychloroquine (HCQ), also known as Plaquenil, and Chloroquine (CQ), are inexpensive anti-malarial drugs commonly used to manage symptoms of systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA) because it has been shown to prevent “flares” (episodes when symptoms worsen), prevent disease progression, and help people live longer.
Most drugs have some unwanted ‘side-effects’, such as causing nausea. Research shows that taking HCQ or CQ for long period of time can affect vision, and if not detected on time, it may lead to damages to a patient’s vision. It is recommended that people taking HCQ or CQ for 5 years or more should have their vision tested by an ophthalmologist every year using new technology that detects early changes before they are irreversible.
A recent study by Arthritis Research Canada found that about 40% of those who should have had their vision tested had not had the test within the past 5 years – it was even worse (almost 70% didn’t have their vision tested) if they were not being cared for by a rheumatologist.
Des soins de l’arthrite qui visent la « satisfaction du patient » : ce que vous avez partagé avec le comité ACE
Dans ce premier numéro de 2018 du JointHealth™ insight publié par le comité ACE (Arthritis Consumer Experts), nous partageons les résultats de trois sondages menés auprès de nos membres vers la fin de 2017 et grâce auxquels nous avons appris de vous, la personne atteinte d’arthrite (ou d’un membre de votre famille ou aidant), à quoi ressemble votre expérience de la maladie et votre cheminement dans le système de santé. Avez-vous obtenu cette « satisfaction du patient » au degré désiré ?
Dans ce numéro, vous pourrez en lire plus sur :
Vivre avec l’arthrite – un regard personnel
Fixer des objectifs de traitement et discuter des choix de médicaments avec votre professionnel de la santé
Les tenants et aboutissants de « l’autogestion » – c’est vous la vedette
Getting “Patient Satisfaction” from Arthritis Health Care: What You Told ACE
In Arthritis Consumer Experts’ (ACE) first JointHealth™ insight of 2018, we share the results of three member surveys conducted at the end of 2017 and learn from you, the person with arthritis (or family member or caregiver), what your disease experiences are like and your journey through the health care system. Are you getting “patient satisfaction”?
In this issue, read about:
Living with arthritis – a personal look
Setting treatment goals and discussing therapy preferences with your health professional