Partnering with your healthcare team

Call for patient input on guselkumab for moderate to severe plaque psoriasis

Stickman with megaphone calling for patient inputDo you have moderate to severe plaque psoriasis 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 guselkumab for the treatment of moderate to severe plaque psoriasis.

Guselkumab belongs to the biologic response modifier class of inflammatory arthritis medications. It works by blocking the interleukin (IL)-23 molecule, a cytokine that plays a key role in plaque psoriasis.

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 public reimbursement of medications, we would like to gather your views and share them with the CDR.

These are the questions they are asking: Continue reading

eROAR2013: A case study on sustaining patient-research collaborative practices

Patient engagement is encouraged from the moment the patient steps into their doctor’s office and has been demonstrated to improve the patient’s overall health outcome. In recent years, the term “patient engagement” has emerged in health research and knowledge translation. A study published in the Journal of Participatory Medicine reports on a research knowledge translation event, titled eROAR2013 (Reaching Out with Arthritis Research), led by members of the Arthritis Patient Advisory Board of Arthritis Research Canada. Using a case study approach, study authors describe the planning and the event itself, report on the challenges encountered, and note reflections and solutions that are pertinent for sustaining patient-research collaborative practices.

Definition of patient engagement

According to the study, patient engagement in research varies from minimal involvement to more participatory collaboration, and is broadly understood to occur when patients meaningfully and actively collaborate at any stage of the research process, from setting the research agenda to designing the research project, collecting data, and disseminating results. The foundation of patient engagement in health research is based on:

  • the motto “Nothing About Us Without Us” from Charlton J.’s study “Nothing about Us, Without Us: The Dialectics of Disability Oppression and Empowerment”
  • encouraging citizen empowerment through participation and wider societal developments
  • activating “patient as partners” to create patient-centred care and promote shared decision making
  • meeting current research values and ethical concepts such as mutual respect

The history of the Arthritis Patient Advisory Board (APAB) 

The Arthritis Patient Advisory Board (APAB), formerly known as the Consumer Advisory Board (CAB), is comprised of volunteer advocates with arthritis who bring personal experience and arthritis knowledge to research decision making at Arthritis Research Canada (ARC). Their goal is to ensure the patient perspective is represented on research matters related to prevention, treatment and self-management of arthritis. Individually and collectively, they communicate research information and findings to arthritis patients, professional organizations and the general public.

Their mission is “to participate in all components and phases of arthritis research, and serve as a bridge between researchers, people with arthritis, and the community at large.” Since 2006, APAB members have organized annual knowledge translation events called Reaching Out with Arthritis Research in Vancouver, Canada. Each interactive event includes presentations from patients, researchers and health professionals. Topics covered include practical disease management information, best practices in prevention and management of arthritis and case studies from current research.

Planning and Preparation

visual note taken by patient arranged Sam Bradd Continue reading

Bonne nouvelle pour les Canadiennes et Canadiens atteints de polyarthrite rhumatoïde et de spondylarthrite ankylosante

A woman happy about good news for CanadiansLe Yukon, l’Ontario et la Colombie-Britannique ont récemment ajouté le biosimilaire de l’étanercept (Brenzys®) à leur liste provinciale de médicaments remboursables respective pour le traitement de la polyarthrite rhumatoïde et de la spondylarthrite ankylosante. Les critères et les conditions qui suivent doivent être respectés :

  • Critère clinique : à utiliser chez les patients lorsque l’étanercept est considéré comme l’option thérapeutique la plus appropriée.
  • Conditions : le Brenzys® doit être remboursé selon les mêmes modalités que l’Enbrel®; et le traitement par le Brenzys® devrait être beaucoup plus économique que l’Enbrel® pour les régimes d’assurance-médicaments publics dans les juridictions visées

Le 25 octobre 2016, ce biosimilaire de l’étanercept (Brenzys®) a été approuvé pour le traitement de la polyarthrite rhumatoïde et de la spondylarthrite ankylosante. Le Brenzys® est un biosimilaire dont le produit de référence, Enbrel®, est autorisé au Canada. Les deux produits contiennent l’ingrédient pharmaceutique actif, l’étanercept. Le mécanisme d’action du Brenzys® cible la molécule du facteur de nécrose tumorale alpha (TNFa). Le Brenzys® est administré par injection sous-cutanée. Veuillez cliquer ici pour lire les détails du sommaire de la décision de Santé Canada pour le Brenzys®.

Pour les détails de l’inscription aux listes de médicaments remboursables, accédez à la fiche-rapport JointHealth™ sur les médicaments contre l’arthrite.

Good news for Canadians living with rheumatoid arthritis and ankylosing spondylitis

A woman happy about good news for CanadiansYukon, Ontario, and British Columbia have all recently added biosimilar etanercept (Brenzys®) to their provincial formularies for the treatment of rheumatoid arthritis and ankylosing spondylitis. The following clinical criterion and conditions must be met:

  • clinical criterion: for use in patients for whom etanercept is considered to be the most appropriate treatment option.
  • conditions: Brenzys® must be reimbursed in a manner similar to Enbrel®; and, the cost of treatment with Brenzys® should provide significant cost savings for jurisdictions compared with the cost of treatment with Enbrel®

On October 25, 2016, biosimilar etanercept (Brenzys®) was approved for the treatment of rheumatoid arthritis and ankylosing spondylitis. Brenzys® is a biosimilar to the Canadian authorized reference product, Enbrel®. Both contain the active pharmaceutical ingredient, etanercept. Brenzys® works by targeting the tumor necrosis factor alpha (TNFA) molecule and is given by subcutaneous injection. Please click here to read the details of Health Canada’s decision summary for Brenzys®.

Listing details can be found in the JointHealth™ Arthritis Medications Report Card.

Rappel : 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 ?

 

Le prix Qualman-Davies en leadership communautaire en matière 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.

Le 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.

Processus de mise en candidature :

Pour soumettre une candidature, veuillez suivre les quatre étapes suivantes. Vous devez :

  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;
  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 31 août 2017. La candidature retenue sera annoncée et la personne ayant soumis cette candidature sera avisée de la sélection de la candidature par le président du comité d’attribution du prix d’ici le 8 septembre 2017. Le prix sera décerné en personne dans le cadre de la réception de la conférence annuelle de l’Alliance canadienne des arthritiques, qui se tiendra le jeudi 26 octobre 2017 à Vancouver, en Colombie-Britannique (les dépenses du ou de la récipiendaire du prix seront prises en charge).

Reminder: Do you know a volunteer with arthritis who deserves an award?

Banner for Qualman-Davies Award for volunteer with arthritisThe Qualman-Davies Arthritis Consumer Community Leadership Award

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.

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 four 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.
  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 August 31, 2017. The winner and their nominator will be notified by the adjudication committee chair by September 8, 2017. The award will be bestowed in person at the Arthritis Alliance of Canada’s 2017 Annual Meeting Reception taking place on Thursday, October 26th in Vancouver, British Columbia (award recipient’s expenses will be covered).