Rappel: Demande de rétroaction de patients sur le tofacitinib (Xeljanz®) pour le traitement de l’arthrite psoriasique

Megaphone GraphicSouffrez-vous d’arthrite psoriasique ou prodiguez-vous des soins à quelqu’un qui en souffre ? Vos commentaires seraient précieux.

Le Programme commun d’évaluation des médicaments (PCEM) accueille actuellement les commentaires et suggestions des patients et des fournisseurs de soins sur la présentation par le fabricant du tofacitinib (Xeljanz®) pour le traitement de l’arthrite psoriasique lorsque la réponse au traitement antérieur par un antirhumatismal modificateur de la maladie (ARMM) s’est avérée inadéquate.

Le PCEM fait partie de l’Agence canadienne des médicaments et des technologies de la santé. Le PCEM examine avec objectivité et rigueur l’efficacité et la rentabilité des médicaments et fournit des recommandations aux régimes d’assurance-médicaments publics du Canada (à l’exception du Québec) quant à leur inscription sur la liste des médicaments assurés.

Afin de l’aider dans son processus de recommandation, le PCEM accepte la rétroaction de groupe de patients comme le comité ACE (Arthritis Consumer Experts). C’est dans cette optique que nous désirons recueillir vos commentaires pour communication au PCEM.

Voici l’information que recherche le PCEM dans ce dossier particulier : Continue reading

Reminder: Call for patient input on tofacitinib (Xeljanz®) for psoriatic arthritis

Megaphone GraphicDo you have psoriatic arthritis or care for someone who does? We need your valuable input.

The Common Drug Review (CDR) is currently welcoming patients and their caregivers to provide input on the manufacturer’s submission for tofacitinib (Xeljanz®) for the treatment of psoriatic arthritis (PsA) when the response to previous disease-modifying anti-rheumatic drug (DMARD) therapy has been inadequate.

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 groups, like Arthritis Consumer Experts (ACE). We would like to gather your views and share them with the CDR.

These are the questions they are asking: Continue reading

Types of arthritis that make people more sensitive to sunlight

Lupus, psoriatic arthritis, and scleroderma are several types of arthritis that make people more sensitive to sunlight – either because of arthritis itself or the medications they take to treat it. It is important for these people to include sun protection as part of their self-management plan.

Stay sun safe image with beach essentialsThe sun radiates two types of “invisible” ultraviolet light that are harmful if you are exposed to it for a long period of time – ultraviolet A (UVA) can age the skin and ultraviolet B (UVB) can burn the skin. Both UVA and UVB can alter the DNA of skin cells, increasing the risk of skin cancer. For people living with lupus, psoriatic arthritis or scleroderma, sun exposure can make symptoms worse or increase damage to skin cells.

Sun sensitivity is a hallmark of lupus. People with lupus experience one or many of these symptoms:

  • “butterfly” rash over the bridge of the nose and the upper cheeks
  • scaly, purplish lesions on the face and neck
  • red, circular rashes on the chest, back and arms

Sun exposure can bring on these rashes or make existing rashes worse. Those with systemic lupus erythematosus find that exposure to the sun triggers a flare, including joint pain, fatigue, and fever.

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Nous vous invitons à répondre à un sondage pour le développement d’un « outil d’information sur l’arthrose destiné aux patients »

Nous vous invitons à répondre à un sondage pour le développement d’un « outil d’information sur l’arthrose destiné aux patients »

L’outil d’information sur l’arthrose destiné aux patients sera une nouvelle ressource éducative et documentaire précieuse pour les personnes aux prises avec de l’arthrose, précoce ou bien établie, au niveau des mains, des genoux et (ou) de la hanche. 

L’Alliance de l’arthrite du Canada, le Collège des médecins de famille du Canada et le Centre for Effective Practice sollicitent votre collaboration afin de contribuer au développement d’une nouvelle ressource éducative et documentaire qui sera précieuse pour les personnes aux prises avec de l’arthrose, précoce ou bien établie, au niveau des mains, des genoux et (ou) de la hanche. Cet outil d’information aidera les patients atteints d’arthrose à avoir des discussions plus efficaces avec leur médecin ou autres professionnels de la santé en les informant quant aux soins auxquels ils peuvent s’attendre.

Il vous faudra environ 10 minutes pour répondre au sondage. Votre participation demeurera anonyme. La date limite pour y répondre est le mercredi 25 juillet 2018 à 17 h, heure normale du Pacifique.

Merci de votre aide et de votre temps !

Cordialement,

Arthritis Consumer Experts

Please take the development survey for an “Osteoarthritis (OA) Information Tool for Patients”

The Osteoarthritis (OA) Information Tool for Patients will be a valuable information and education resource for people experiencing early or established hand, knee and/or hip OA.

The Arthritis Alliance of Canada, The College of Family Physicians of Canada and the Centre for Effective Practice need your help to inform the development of a new and valuable information and education resource for people experiencing early or established hand, knee and/or hip osteoarthritis. The Osteoarthritis (OA) Information Tool for Patients will assist patients in having better conversations with their doctor or other health care professional(s) by informing them about the care they can expect to receive.

The survey will take approximately 10 minutes to complete. Your participation will be anonymous. The deadline to complete the survey is Wednesday, July 25, 2018 at 5pm Pacific Standard Time.

Thank you for your time and help!

Sincerely,

Arthritis Consumer Experts

Appel de candidatures : Aidez-nous à souligner la contribution de ces leaders communautaires atteints d’arthrite !

Connaissez-vous quelqu’un atteint d’arthrite qui fait ou a fait preuve de leadership au sein de la collectivité et dont les activités de bénévolat méritent d’être récompensées ? Nous vous encourageons à nous aider à souligner leur précieuse contribution en soumettant leur candidature au prix Qualman-Davies en leadership communautaire en matière d’arthrite.

Qualman-Davies SlideLe prix Qualman-Davies en leadership communautaire en matière d’arthrite a été créé en 2014 afin de souligner la contribution d’un individu aidant les Canadiennes et Canadiens atteints d’arthrite à faire entendre leur voix pour qu’ils puissent prendre part au processus de décision affectant des millions de personnes. C’est justement ce que Ann Qualman et Jim Davies ont accompli. Pionniers de la défense du dossier de l’arthrite au Canada, leurs efforts infatigables et leur dévouement ont permis d’aider des millions de Canadiennes et de Canadiens.

Pour soumettre une candidature, veuillez suivre les étapes suivantes :

  1. Obtenir le consentement de la personne dont vous souhaitez soumettre la candidature avant de remplir le formulaire de candidature;
  2. Cliquer ici pour accéder au formulaire de candidature. Si vous désirez créer un formulaire distinct, veuillez utiliser les en-têtes figurant au formulaire de candidature en format PDF afin d’en faciliter l’examen par le comité d’attribution du prix;
  3. Soumettre le formulaire de candidature dûment rempli à la personne faisant l’objet de cette candidature pour qu’elle en vérifie l’exactitude et lui demander de signer le document;
  4. Soumettre le formulaire rempli à feedback@jointhealth.org

La date limite pour la mise en candidature est le 20 septembre 2018. Chaque candidature sera examinée par le comité d’attribution du prix et notée selon un système de points. Le ou la candidat(e) retenu(e) de même que la personne ayant soumis cette candidature seront avisé(e)s d’ici le 2 octobre 2018. Le prix sera annoncé dans le cadre du gala du congrès annuel de l’Alliance de l’arthrite du Canada, qui se tiendra le 21 novembre 2018 à Toronto en Ontario.

Call for nominations: Help us celebrate community leaders living with arthritis!

Do you know a person with arthritis who has, or is, providing leadership in the community and deserves recognition for their valuable volunteer work? We encourage you to help us celebrate their contributions by nominating them for the Qualman-Davies Arthritis Consumer Community Leadership Award.

Qualman-Davies Award Slide

The Qualman-Davies Arthritis Consumer Community Leadership Award was created in 2014 to recognize one person’s contributions to helping Canadians living with the disease to be heard in decision-making processes that affect millions. That’s what Ann Qualman and Jim Davies did as early pioneers in arthritis advocacy in Canada. Their tireless and selfless efforts helped millions of Canadians.

To submit a nomination, please follow the steps listed below:

  1. Obtain the prospective nominee’s consent to be nominated prior to submitting this form
  2. Click here for the nomination form. If you create a separate nomination document, please use the headings provided on the Nomination Form PDF for ease of review by the award adjudication committee.
  3. Provide the completed nomination form to the nominee for their review for accuracy and obtain their signature on the document
  4. Submit the form to feedback@jointhealth.org

The application deadline is September 20, 2018. Each submission will be reviewed by the award adjudication committee and scored using a points system. The winner and their nominator will be notified by October 2, 2018. The award will be announced at the Arthritis Alliance of Canada’s 2018 Annual Meeting Reception taking place on Wednesday, November 21, 2018 in Toronto, Ontario.

EULAR News – June 22, 2018: A final observation from this year’s EULAR meeting

EULAR News – June 22, 2018

A final observation from this year’s EULAR meeting
newspaper in mail slot

A final observation from this year’s EULAR meeting encouraging to all patients is the emphasis many sessions had on the importance of patient participation and partnerships for achieving research outcomes that are relevant to the actual patients. Many presentations clearly communicated that no matter how complicated the research or how brilliant the researcher, patients can always offer unique, invaluable insights.

Experience in Europe and North America has shown that patient advice when designing, implementing and disseminating research outcomes makes studies more effective, more credible and possibly even more cost efficient.
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Dr. Cheryl Barnabe – Champion of arthritis care and research in Indigenous communities

Arthritis Broadcast Network had the pleasure of interviewing Dr. Cheryl Barnabe at a #CRArthritis event, a champion of arthritis care and research in Indigenous communities. In this interview, Dr. Cheryl Barnabe, Assistant Professor at the Division of Rheumatology at the University of Calgary, shares with us information from her workshop “Investigating access to arthritis health services for Aboriginal people: A Framework for System Reform”.

Rheumatoid arthritis affects about 1% of the Canadian population or 1 out of every 100 people. This increases to 5% for aboriginal Canadians. This population not only is at greater risk for getting RA but the disease is more severe than with other populations. For aboriginal people rheumatoid arthritis is one of the five top five chronic diseases reported. More Canadian women get RA then men (3:1), however, this figure almost doubles for aboriginal women.

A study conducted by the National Aboriginal Health Organization (NAHO) 2002, by First Nations people for First Nations people, had approximately 22,000 participants making up 238 communities, both on-reserve and off-reserve First Nations people across Canada.

The following highlights some of the results of the study:

  • arthritis is one of the five top conditions to affect the First Nations population
  • more than half (52%) of First Nations adults with disabilities reported having arthritis compared to 14.6% without disabilities
  • 25.3% of First Nations adults have arthritis compared to 19.1% of the general Canadian population
  • there is a higher rate of arthritis among First Nations women compared to other women in Canada, except for women over 60 years of age. The following chart shows the range of difference between these two groups with more than double the First Nations women with arthritis compared to other Canadian women up to age 39 years.

Dr. Barnabe is also a past recipient of the Canadian Institutes of Health Research’s (CIHR) Foundation Grant. Below is the description of the award on the CIHR website:

Developing a more complete picture of arthritis in Indigenous communities

 

 

 

 

 

 

 

 

 

 

 

 

“Most people aren’t aware that women and Indigenous people are at a much higher risk for arthritis, and that kids can get arthritis too.” — Dr. Cheryl Barnabe

CIHR Foundation Grant Recipient

Dr. Cheryl Barnabe
Cumming School of Medicine
University of Calgary

Dr. Barnabe’s Research

Dr. Cheryl Barnabe, a Métis clinician and researcher at the University of Calgary, is exploring why arthritis appears to disproportionately affect Indigenous communities, and what can be done to reduce these disparities. Continue reading

EULAR News – June 16, 2018

newspaper in mail slot

The benefits of exercise in inflammatory arthritis and osteoarthritis

ACE has frequently written about the benefits of exercise in inflammatory arthritis (IA) and osteoarthritis (OA). During a series of EULAR presentations, speakers provided evidence for regular physical activity for IA and OA patients.

Anne- Kathryn Rausch, an academic from Zurich University, spoke about how general recommendations for physical activity are effective, safe and feasible for patients with ankylosing spondylitis, rheumatoid arthritis, and osteoarthritis.
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