Arthritis Consumer Experts today announced the launch of the Biosim•Exchange
Arthritis Consumer Experts today announced the launch of the Biosim•Exchange – the first central resource in Canada for consumers to find timely, fact-based information on biosimilars safety and effectiveness and report on public and private health insurance formulary policy or listing decisions on biosimilars.
“There is a real need for balanced, evidence-based information on biosimilars. Our aim with the Biosim•Exchange is to help patients better understand biosimilars and their place among other inflammatory arthritis treatments. With this knowledge, patients can have a full therapy conversation with their rheumatologist (or other specialist) in order to best decide on their choice of medications, including originator biologics or biosimilars,” said Cheryl Koehn, Founder & President, Arthritis Consumer Experts.
Last call for Qualman-Davies Arthritis Consumer Community Leadership Award
Friday, August 26 is the deadline to nominate an outstanding leader for the Qualman-Davies Arthritis Consumer Community Leadership Award in honour of Canada’s earliest pioneers in arthritis advocacy – Ann Qualman and Jim Davies – whose efforts contributed to the well-being and future of millions of Canadians.
Support the people that are making a difference in Canada by nominating an individual for the Qualman-Davies Arthritis Consumer Community Leadership Award.
To submit a nomination, please follow the four steps listed below.
Obtain the prospective nominee’s consent to be nominated prior to submitting this form.
This year’s recipient of the Qualman-Davies Arthritis Consumer Community Leadership Award will be honoured at the Arthritis Alliance of Canada’s Annual Conference Gala on October 27, 2016 in Montréal, Quebec.
WHO: Research Ambassadors are members of the public who live with, or advocate for others living with a condition that falls under CIHR – IMHA’s research mandate (conditions related to bones, joints, muscles, connective tissue, skin and teeth). Research Ambassadors bridge the gap between researchers and patients, addressing the different stages of the research process known as: Basic Biomedical Science, Clinical Science and Knowledge, and Clinical Practice and Health Decision Making.
EULAR Press interviews Cheryl Koehn on patient satisfaction and RA treatment
Cheryl Koehn discusses the importance of treatment conversations between patients and healthcare professionals.
This year’s European League Against Rheumatism Annual Congress (EULAR2016) highlighted patient-focused initiatives that aimed to:
Improve the understanding of the patient perspective
Encourage patient participation
Optimize care of rheumatic diseases
One of the initiatives is the RA NarRAtive initiative – a patient survey fielded in 15 countries around the world and designed to evaluate the patient/healthcare professional relationship and communication and patients’ experience and satisfaction with treatment and disease management. To view the interview with Cheryl Koehn, please click here.
“Further understanding the responses from this survey will be important to facilitate communication between patients and healthcare professionals, with the ultimate aim of improving treatment outcomes,” said Ms. Cheryl Koehn, President of Arthritis Consumer Experts and member of the RA NarRAtive global advisory panel.
To learn more about the study, please click here to view the press release.
The European League Against Rheumatism Annual Congress is happening from June 8-11 in London, UK. Here is the latest press release highlighting patient-focused efforts at the conference this year:
European League Against Rheumatism Annual Congress
London, United Kingdom, 8-11 June 2016
NEW PATIENT-FOCUSED INITIATIVES SET TO OPTIMISE CARE OF RHEUMATIC DISEASES
Better understanding of the patient perspective and actively encouraging patient participation is key
London, United Kingdom, 8 June 2016: Results from patient-focused initiatives unveiled at the European League Against Rheumatism Annual Congress (EULAR 2016) have highlighted the importance of seeking and better understanding the patient perspective, as well as actively encouraging patient participation, to optimise care of rheumatic diseases.
Findings from these patient-focused initiatives show:
Although many patients are satisfied with their RA treatment, non-adherence persists and many would like to discuss and/or change their current prescribed treatment, but don’t discuss it through fear of their case being compromised*
How patients with rheumatic diseases and their HCPs highly value patient participation in multidisciplinary team conferences, with treatment plans developed in partnership encouraging greater patient commitment and better outcomes**
How patients can usefully be involved in updating clinical training programmes by making healthcare providers and medical students more aware of the patients’ perspective as an important step towards optimizing care in rheumatoid arthritis (RA).***Patient survey highlights importance of treatment conversations between patients and HCPs
Patient survey highlights importance of treatment conversations between patients and HCPs
Although many patients are satisfied with their RA treatment, non-adherence persists and many would like to discuss and/or change their currently prescribed treatment, but don’t discuss it through fear of their care being compromised. This was the main finding from a patient survey, developed by the RA NarRAtive global advisory panel, which was designed to better understand the perspective of patients regarding management of their RA and interactions with their physicians.*
The RA NarRAtive initiative is the first survey of its kind to simultaneously evaluate the patient/HCP relationship and communication, as well as patients’ experience and satisfaction with treatment and disease management.More than 3,600 adults with RA from 13 countries responded to the patient-based survey. Almost one-half of RA patients under HCP care acknowledged that dialogue with their physician would optimise management of their condition. However, around six out of every ten respondents felt uncomfortable raising treatment/disease concerns to their HCP, feeling anxiety about raising too many questions and consequentially being perceived as a difficult patient.Although the current treatment goal for physicians is to achieve clinical remission or low disease activity,**** patients most commonly defined successful treatment as a reduction of pain and/or joint swelling/inflammation (81%) and improvements in quality of life (77%).
“Further understanding the responses from this survey will be important to facilitate communication between patients and HCPs, with the ultimate aim of improving treatment outcomes,” said lead author Ms. Cheryl Koehn, President of Arthritis Consumer Experts, Vancouver, Canada.
Of the 2,139 RA patients receiving medication, justover one-third admitted to not taking it as prescribed. Overall, just over three-quarters of patients currently taking RA medication were satisfied with their treatment regimen; however, 70% desired fewer medications, more than one-half were worried their medications would fail, and more than one-half wanted more medication choices. Aspects of current prescribed treatment that RA patients would most like to change included: number and frequency of medications (35%); side effects (34%); access to, or cost of treatment (30%); availability of mono therapy (25%); alternative to subcutaneous injections (18%); inconvenience or limitations from medication (16%); and mode of administration (12%).
This forum will help patients with ankylosing spondylitis and psoriatic arthritis and their family. Register now for free! The Spondyloarthritis Research Consortium of Canada and the Canadian Spondylitis Association, in collaboration with The Arthritis Society, would like to invite you to register for free to the 2016 Spondyloarthritis Patient Forum. The forum aims to help patients living with ankylosing spondylitis (AS) and psoriatic arthritis (PsA) and their family. Light refreshments will be provided.
Here are the event details:
Date: Saturday, April 30, 2016 Location: Sheraton Vancouver Wall Centre, Junior Ballroom CD
1088 Burrard Street, Vancouver Time: 3:30pm-7:00pm Cost: Free
Please note pre-registration is required. Seats are limited. You can register: Continue reading →
Exploring Patient-Centered Care in Inflammatory Arthritis
A research team at the University of British Columbia is exploring experiences of people who have inflammatory arthritis dealing with their healthcare team. A healthcare team may include healthcare professionals, loved ones, and other caregivers.
The team is looking for patients who are:
age 18 years or older
live within the Greater Vancouver area
can understand and speak English
have been diagnosed with inflammatory arthritis (rheumatoid arthritis, ankylosing spondylitis and other spondyloarthropathies, reactive arthritis, psoriatic arthritis, gout and pseudo-gout, lupus, connective tissue disorders)
have been diagnosed within the last two and a half (2.5) years
A recent study suggest that the risk of a flare increased by more than three-fold over 1 year when patients in remission, or with stable low disease activity, from rheumatoid arthritis (RA) stopped their anti-tumor necrosis factor (TNF) treatment. The study had 816 patients who had used a TNF inhibitor for at least 1 year and stable doses of conventional disease-modifying anti-rheumatic drugs for at least 6 months.
In the study, a patient’s remission was defined as a disease activity score in 28 joints (DAS28) below 6.2, or had a low disease activity (a DAS28 below 3.2), for at least 6 months. Participants were also considered stable based on rheumatologists’ clinical impression in combination with a baseline DAS28 below 3.2 and at least one C-reactive protein (CRP) level below 10 mg/L in the 6 months prior. A flare was a DAS28 score of 3.2 or higher with an increase of 0.6 or more compared with the baseline DAS28. Participant’s mean age was 60, with mean disease duration of 12 years.
…oppose changes to planned expansion to BC government’s Reference Drug Plan. Better Pharmacare Coalition eager to work with government to get it right for patients
A recent Better Pharmacare Coalition (BPC) poll has found that British Columbians oppose expansion of the Ministry of Health’s Reference Drug Program based on concerns that expansion could compromise patient health.
The BC government has approved amendments to the Drug Price Regulation that will expand the Ministry of Health’s Reference Drug Program (RDP). In anticipation of this expansion, the BPC conducted an online poll, which found a resounding 82% of British Columbians are concerned that administrators of the BC PharmaCare program will be implementing a policy that tells physicians which medications they can prescribe for patients, even if it goes against physicians’ opinions of the best care for their patients. Continue reading →
Do 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.