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

Le Réseau de diffusion sur l’arthrite figure au 5e rang de la liste Feedspot des 20 meilleures chaînes YouTube sur l’arthrite

Grâce à notre public toujours plus nombreux, le Réseau de diffusion sur l’arthrite (RDA), généré par le comité ACE (Arthritis Consumer Experts), est la chaîne canadienne offrant le plus de vidéos et ayant obtenu le plus de visionnements !

Feedspot Top 20 Arthritis YouTube Channel to follow badgeLe Réseau de diffusion sur l’arthrite figure au 5e rang de la liste Feedspot des 20 meilleures chaînes YouTube sur l’arthrite (en anglais seulement). Le classement est établi en fonction des critères suivants :

  • Nombre total des abonnés de la chaîne YouTube, des visionnements vidéo et des téléchargements vidéo
  • Qualité et cohérence des vidéos
  • Classement de recherche YouTube
  • Examen objectif and subjectif de l’équipe de rédaction et de révision Feedspot

Sur la liste de Feedspot, le RDA est la chaîne canadienne offrant le plus de vidéos et ayant obtenu le plus de visionnements – un total de 200 vidéos et de 242 489 visionnements ! La chaîne du Réseau de diffusion sur l’arthrite fournit de l’information sur les différentes formes d’arthrite, la gestion de la douleur, l’autotraitement, l’exercice, l’alimentation, les modèles de soins, l’engagement patient, la recherche et bien d’autres questions importantes pour la collectivité arthritique. Nous vous invitons à manifester votre soutien et à aider les autres personnes atteintes d’arthrite par les actions suivantes :

Arthritis Broadcast Network ranked #5 on Feedspot’s Top 20 Arthritis YouTube channels to Follow

Arthritis Broadcast Network ranked #5 on Feedspot’s Top 20 Arthritis YouTube channels to Follow

Thanks to our growing audience, Arthritis Broadcast Network (ABN) – powered by Arthritis Consumer Experts – has the most videos and views on a Canadian channel!

Feedspot Top 20 Arthritis YouTube Channel to follow badge

Arthritis Broadcast Network has been ranked #5 on the top 20 arthritis YouTube channels to follow by Feedspot. Rankings are based on the following criteria:

  • Total YouTube channel subscribers, video views, and video uploads
  • Quality and consistency of videos
  • YouTube search ranking
  • Feedspot editorial team’s objective and subjective review

On Feedspot’s list, ABN has the most videos and views on a Canadian channel – a total of 200 videos and 242,489 views!

Arthritis Broadcast Network’s channel provides information about the different types of arthritis, pain management, self-care, exercise, nutrition, models of care, patient engagement, research, and many other topics valuable to the arthritis community. Please show your support and help others living with arthritis by doing the following:

The Newfoundland and Labrador election is today.

Vote4Arthritis: Responses to ACE’s arthritis survey

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What changes would you like to see in models of arthritis care? 

ACE sent an open letter and a survey to candidates running in the Newfoundland and Labrador election. As part of its core government outreach activities and in the spirit of non-partisanship, ACE outlines the impact of arthritis in Newfoundland and Labrador and asks each candidate to share how government can improve prevention, treatment and care in Newfoundland and Labrador.

Below are the responses collected to date:

ACE letter sent to each candidate included:

Party responses to survey

Individual Candidate Responses

Please continue checking our Newfoundland and Labrador 2019 page as responses will be posted as we receive them. If you have comments, questions, or concerns about any of the answers provided, please take the time to contact the parties.

On Newfoundland and Labrador’s election day, make your voice count.

The general election in Newfoundland and Labrador is scheduled for May 16, 2019. What changes would you like to see in arthritis models of care?

Arthritis is a chronic disease that has a devastating and debilitating effect on the lives of more than 115,000 Newfoundland and Labrador residents – approximately one in five. Within a generation, more than one in four residents are expected to have the most disabling and life-threatening types – osteoarthritis and rheumatoid arthritis.

Newfoundland and Labrador election banner

Arthritis is also the leading cause of disability and work disability in Newfoundland and Labrador, with nearly three out of every five people with arthritis of working age.

Considering the prevalence of the disease and its significant cost to individuals and society, arthritis is an issue of great importance to candidates running for office. ACE sent an open letter and a survey to candidates running in the Newfoundland and Labrador election. As part of its core government outreach activities and in the spirit of non-partisanship, ACE asks each candidate to share how government can improve prevention, treatment and care in Newfoundland and Labrador.

The questionnaire asked the following questions:

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On World Lupus Day, learn how lupus and rheumatoid arthritis are similar

May 10 is World Lupus Day. Do you know that lupus and rheumatoid arthritis (RA) share similar symptoms? Both can cause joint pain, swelling, and stiffness. The joints that are most commonly affected – the small joints in the fingers, knees, ankles, and toes – are the same. Both lupus and RA can cause morning stiffness lasting for at least an hour and symptoms usually appear symmetrical (i.e., both wrists are in pain).

picture of a purple butter to represent world lupus day

Below are symptoms that people with lupus experience and are rare in those with RA:

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Good news for British Columbians living with psoriatic arthritis

BC PharmaCare has recently added biologic biosimilar etanercept (Erelzi®) to their provincial formularies for the treatment of psoriatic arthritis. 

Erelzi is approved for the treatment of psoriatic arthritis according to criteria detailed in HLTH 5360 (initial/switch) or HLTH 5361 (renewal) and when prescribed by a rheumatologist. Erelzi is approved for patients granted special authority (SA) as of April 9, 2019. The biologic originator (Enbrel) is only available to patients granted SA prior to April 9, 2019.

Please note pediatric rheumatologists do not have to complete an SA request for pediatric patients diagnosed with common pediatric rheumatology indications when using up to 50 mg of etanercept weekly. ParmaCare covers a maximum 28-day supply of etanercept per fill. Click here to read the limited coverage drugs listing.

Attention British Columbians: Your feedback is needed on developing standards that may affect how you receive joint injections

The College of Physicians and Surgeons of British Columbia is accepting feedback on developing standards for procedural pain management that may affect how you receive joint injections 

stick man with megaphone for patient input

The College of Physicians and Surgeons of British Columbia announced in 2016 an initiative to develop standards for the accreditation of procedural pain management (PPM) procedures performed in community-based physician offices, practices, and clinics. The College is inviting your feedback on the new PPM accreditation standards. 

For patients living with arthritis, these standards would prevent shoulder and biceps tendon injections from being performed in an office setting and only in an intermediate level facility requiring higher standards (special hospital clinics). Your physician would have to give you a referral for such injections. When providing feedback, please consider the following:

  • You may experience a delay for the injections due to long waitlists or wait times
  • You may have to take more time off work to travel farther to get to these special hospital clinics
  • You may have to go through more administration work just to get an appointment for your injections
  • The proposed changes for these injections are not backed by evidence collected from studies conducted by accredited institutions

Please note the British Columbia Society of Rheumatologists strongly supports maintaining access to shoulder and biceps tendon injections in all outpatient clinical settings. These injections have a long proven record of safety. Restricting access will be detrimental to patients with inflammatory diseases.

The College of Physicians and Surgeons of British Columbia is accepting feedback on this consultation via this survey. The deadline for feedback is Monday, May 27th 2019.

Thank you.

Arthritis Consumer Experts

Sleep myths that could be affecting your health

In a recent study published in Sleep Health, researchers from the New York University School of Medicine in New York City identified 20 common sleep myths and found little or no evidence in support of these beliefs. These myths could potentially be affecting your overall health.

These sleep myths underwent an internet and literature review and a Delphi process (a systematic protocol for collecting expert opinions) with 10 sleep experts from the field of sleep medicine and research. The goal of the study was to change the general mindset about sleep, especially the belief that getting by on less sleep is desirable. The research occurred in 3 phases:

  • Phase 1 – focus groups
  • Phase 2 – email-based feedback to edit, add, or remove myths
  • Phase 3 – sleep experts rated myths based on falseness and public health significance, using a 5-point scale (1 being “not at all” and 5 being “extremely false”)
Sleeping woman on bed

Below are some of the common myths mentioned in the study:

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Avis émis par Santé Canada à propos du Benlysta (belimumab) contre le lupus érythémateux disséminé

Des effets indésirables graves de dépression, d’idées et de comportements suicidaires ou d’automutilation ont été rapportés plus fréquemment chez des patients atteints de lupus érythémateux disséminé recevant Benlysta plutôt qu’un placebo dans le cadre d’une étude réalisée après la commercialisation.

Voici un extrait de l’avis de sécurité publié par Santé Canada :

Information à l’intention des consommateurs

BENLYSTA est utilisé en association avec d’autres médicaments pour traiter les adultes atteints de lupus (lupus érythémateux disséminé).

Un risque accru de signes ou de symptômes de maladie mentale comme la dépression, des idées ou des comportements suicidaires et des changements de l’humeur a été observé chez les patients qui reçoivent BENLYSTA.

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Health Canada warning about Benlysta (belimumab) for systemic lupus erythematosus

Serious adverse events of depression, suicidal ideation or behaviour, or self-injury were reported more frequently in patients with systemic lupus erythematosus receiving Benlysta than in patients receiving placebo during a post-marketing study 

Below is an excerpt from the safety alert published by Health Canada

Information for consumers

Benlysta is used in combination with other medicines to treat adults with lupus (systemic lupus erythematosus).

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JointHealth™ insight – #CRArthritis: les tendances en matière de recherche sur l’arthrite

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Dans le numéro d’avril du JointHealth™ insight, insight publié par le comité ACE (Arthritis Consumer Experts), nous explorons le concept de « Bâtir des ponts », thème de l’Assemblée scientifique annuelle de cette année de l’Association canadienne de rhumatologie (ACR) et de l’Association des professionnels de la santé pour l’arthrite (APSA), et cherchons à savoir ce qu’il signifie pour les patients arthritiques et les fournisseurs de soins de santé. Pour clarifier ce concept, nous avons préparé un guide d’orientation sur les entrevues réalisées dans le cadre de l’événement #CRArthritis de cette année, soulignant les points essentiels abordés pendant l’événement.

En plus des sujets d’intérêt pour les patients, les entrevues fournissent de l’information sur :

  • Bâtir des ponts entre les patients, les fournisseurs de soins de santé, les chercheurs et les professionnels paramédicaux
  • Juste de l’arthrose ?
  • Les enfants et l’arthrite
  • Travailler quand on souffre d’arthrite
  • Recherche spécifique ciblée
  • Quoi de neuf avec les médicaments contre l’arthrite ?
  • L’arthrite en tête
  • Sujets d’actualité chez les organisations de patients arthritiques
  • Modèles de soins de l’arthrite

Toutes les entrevues sont accessibles sur YouTube, Twitter et Facebook.

Pour obtenir les sous-titres en français, veuillez régler les paramètres YouTube pour chaque entrevue.

JointHealth™ insight –Arthritis science: What’s new in the research zoo? #CRArthritis

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In Arthritis Consumer Experts’ (ACE) latest issue of JointHealth™ insight, we explore what “building bridges” – the theme to this year’s Canadian Rheumatology Association and Arthritis Health Professions Association Annual Scientific Meeting – means to arthritis patients and health care providers. To help you, we have prepared a curated guide to a selection of #CRArthritis interviews, outlining key points covered during the event.

Among the topics of interest to patients, the interviews provide information on:

  • Building bridges between patients, healthcare providers, researchers, and allied health professionals
  • Osteoarthritis
  • Kids and arthritis
  • Working with arthritis
  • Targeted specific research
  • Medications
  • Mental health and arthritis
  • Hot topics from arthritis patient organizations
  • Models of arthritis care

All interviews can be accessed through YouTubeTwitter, and Facebook. To turn on French subtitles, please adjust the YouTube settings for each interview.