Bienvenue au réseau de diffusion sur l'arthrite Arthritis Research Centre of Canada Arthritis Consumer Experts

Demande de rétroaction de patients sur le secukinumab (Cosentyx®) dans le traitement de la spondylarthrite ankylosante et de l’arthrite psoriasique

Megaphone GraphicSouffrez-vous de spondylarthrite ankylosante ou 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) invite actuellement les patients et leurs fournisseurs de soins à faire parvenir aux organismes représentant les patients leurs suggestions et commentaires sur la présentation par le fabricant du secukinumab (Cosentyx®) dans le traitement de la spondylarthrite ankylosante et de l’arthrite psoriasique. Le secukinumab est un anticorps monoclonal entièrement humain qui cible l’action de l’interleukine 17A (IL-17A), une protéine au cœur du développement des maladies inflammatoires. Le secukinumab est administré par injection.

Faisant 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). Nous souhaitons recueillir les commentaires de nos membres, nos abonnés et les membres de leur famille atteints de spondylarthrite ankylosante ou d’arthrite psoriasique. Les fournisseurs de soins sont également invités à nous faire parvenir leurs commentaires.

Nous désirons communiquer votre point de vue au PCEM. Continue reading

Call for patient input on secukinumab for AS and PsA

Megaphone GraphicDo you have ankylosing spondylitis (AS) or psoriatic arthritis (PsA) 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 to patient organizations on the manufacturer’s submission for secukinumab (Cosentyx®) for the treatment of ankylosing spondylitis or psoriatic arthritis. Secukinumab is a fully human monoclonal antibody that targets IL-17A, a protein central to the development of inflammatory diseases. It is given by an injection.

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 are calling for input from our members, subscribers and their family members who have ankylosing spondylitis or psoriatic arthritis. Caregivers are also invited to provide input.

We would like to gather your views and share them with the CDR.  Continue reading

Remise du prix à l’Université Simon Fraser par le comité ACE

L’un des meilleurs milieux de travail au Canada pour les employés atteints d’arthrite

A group picture of award winners and presenters

(Left to right: Dennis Leung, Coordinator and Harro Lauprecht, Manager, SFU’s Return to Work/Disability Management Program; Monica Swanson, Manager, SFU Special Projects; Cheryl Koehn and Kelly Lendvoy of ACE)

Bonjour à tous les membres, abonnés et suiveurs ACE,

En tant que personne atteinte d’arthrite, je sais trop bien à quel point il peut être difficile de composer tous les jours avec la dure réalité de vivre avec la maladie, de faire un bon travail au bureau, même les jours ou les périodes où je ne suis pas au meilleur de ma forme. Notre travail représente une grande part de notre vie. Bien plus qu’un simple moyen de subsistance, nous tirons de notre travail une satisfaction personnelle, un sentiment d’accomplissement. C’est pourquoi le comité ACE désire souligner les employeurs du Canada qui se préoccupent d’aider leurs employés atteints d’arthrite à maintenir leur capacité d’occuper un emploi rémunéré.

Le 28 janvier dernier, c’est avec grand plaisir que le comité ACE remettait à l’Université Simon Fraser un des prix du « Meilleur milieu de travail pour les employés atteints d’arthrite ». Maintenir un milieu de travail sain pour tous les employés, y compris ceux atteints de maladies chroniques comme l’arthrite, est l’un des objectifs importants de l’Université Simon Fraser (USF). Je suis encouragée par l’approche de l’USF en matière de mieux-être au travail, et tout particulièrement par la compréhension et l’empathie dont fait preuve l’USF envers ses employés atteints d’arthrite et par les services qu’elle leur offre. Le comité ACE est absolument ravi d’agir comme ressource pour l’USF et d’autres employeurs de partout au Canada afin de mieux informer la population, d’augmenter la sensibilisation envers la maladie et d’explorer des moyens de collaborer tous ensemble afin d’aider les employés atteints d’arthrite à jouir d’une vie meilleure au travail.

Sincèrement,
Cheryl Koehn
Fondatrice et présidente
Comité ACE (Arthritis Consumer Experts)

ACE presents award to Simon Fraser University

One of Canada’s Best Workplaces for Employees Living with Arthritis

A group picture of award winners and presenters

(Left to right: Dennis Leung, Coordinator and Harro Lauprecht, Manager, SFU’s Return to Work/Disability Management Program; Monica Swanson, Manager, SFU Special Projects; Cheryl Koehn and Kelly Lendvoy of ACE)

Hello ACE members, subscribers and followers,

As a person with arthritis I know all too well how difficult in can be to deal with the daily realities of living with the disease and try to do a great job at work, even on days or times when I’m not feeling that well. Because what we do for work is a large part of our lives and we derive not only an income but a sense of personal satisfaction from our jobs, ACE wants to recognize employers in Canada who are dedicated to helping employees with arthritis remain gainfully employed.

It was with great pleasure that on January 28, 2016, ACE presented Simon Fraser University with it’s Best Workplaces for Employees Living with Arthritis award. One of Simon Fraser University’s (SFU) important goals is to maintain a healthy workplace for all employees, including those living with chronic diseases like arthritis. I am so encouraged by SFU’s approach to employee well-being and, in particular, the understanding, empathy and services they provide their employees living with arthritis. ACE is thrilled to be a resource to SFU and other employers in Canada to elevate disease awareness and education and explore ways to collaborate to help employees with arthritis live better lives at work.

Sincerely,
Cheryl Koehn
Founder and President
Arthritis Consumer Experts

About Canada’s Best Workplaces for Employees Living with Arthritis

The Canada’s Best Workplaces for Employees Living with Arthritis program is a national campaign to help employers better understand arthritis in the workplace. Annually, ACE conducts the Canada’s Best Workplaces for Employees Living with Arthritis Awards, a coast-to-coast search to find and recognize three small, medium and large companies who offer exceptional workplaces for their employees living with arthritis. The recipients of the award is recognized for their efforts to make their work environments great for everyone, including employees living with arthritis – the most common chronic disease in the workplace.

About Simon Fraser University

Born in 1965, SFU has become Canada’s leading comprehensive university with vibrant campuses in British Columbia’s largest municipalities – Vancouver, Burnaby and Surrey – and deep roots in partner communities throughout the province and around the world. Simon Fraser University celebrated its 50-year anniversary in 2015.

Quebec’s INESSS wants to hear your comments

Megaphone GraphicQuebec’s INESSS wants to hear your comments on apremilast (Otezla®) and adalimumab (Humira®) 

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

The National Institute of excellence in health and social services (INESSS) in Quebec is asking health professionals, consumers and patients, and patient groups to submit their comments about apremilast (Otezla®) for the treatment of psoriatic arthritis and adalimumab (Humira®) for the treatment of juvenile arthritis. These medications are being evaluated as part of the 2016 update to the List of Medications.  Continue reading

Eagles guitarist Glenn Frey battled rheumatoid arthritis

On January 18, Eagles guitarist Glenn Frey died in New York at the age of 67 due to a combination of problems associated with rheumatoid arthritis (RA), acute ulcerative colitis, and pneumonia. Frey’s manager, Irving Azoff, said that Frey secretly battled rheumatoid arthritis for more than 15 years before he died.

In the outpouring of mourning for Glenn Frey on Twitter, Cheryl Koehn, Founder and President of Arthritis Consumer Experts and a rheumatoid arthritis patient of 25 years, tweeted, “I’m tired of hearing “no one dies of arthritis”. Time for main stream media to recognize our losses. RIP Glenn.”

The band is famous for tracks such as Take It Easy and Hotel California. Despite his secret battle with RA, Frey participated in the Arthritis Foundation’s 2013 Walk to Cure Arthritis Fundraiser. Below is a picture from the Arthritis Foundation’s website of Frey and rheumatologist Dr. Rinaldi from the 2013 event.

Glen Frey with rheumatologist Dr. Rinaldi“Rheumatoid arthritis has taken the life of an incredibly talented musician, whose amazing music will always be part of our lives.” – The Arthritis Foundation Continue reading