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.
People with arthritis need to take action. Together, we need to pull our disease out of the closet and start talking about it.
At a recent dinner party, a good friend of mine said something revealing to me: “I don’t think of you as disabled.” My friend’s comment was meant as a compliment but also reflected the still common misperception of arthritis pain as a “condition” associated with getting old and that can’t really be treated. It also reminded me how people with arthritis are often embarrassed about it and live in silence. This in spite of the fact that arthritis affects more than 4.6 million Canadians, is a debilitating disease and the leading cause of work disability in Canada and limits the activities of nearly 20% of Canadians.
I have had rheumatoid arthritis for 27 years and while I have learned to live it, my life is a far cry from what it once was and what I wanted it to be. In my work, I try to build “pride” in everything ACE does. Still for reasons we have no “movement” but not because we’re not proud. Continue reading →
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%).
Since 1984, the YWCA Women of Distinction Awards have honoured over 250 award recipients and more than 1,450 nominees. The award honours individuals and organizations whose outstanding activities and achievements contribute to the well-being and future of our community. There are twelve possible categories for nomination:
Arts, culture & design
Business & the professions
Education, training & development
Entrepreneurship & innovation
Health & wellness
Research & the sciences
Young woman of distinction
Arthritis Consumer Expert’s very own Cheryl Koehn has been nominated under the health and wellness category. Anyone who has been nominated is described as:
A woman who has an unwavering commitment to delivering, promoting and advocating for healthy lives and communities. She has made a significant and sustained difference in Metro Vancouver while empowering her community to change or better their lives through improved health and wellness practices. She may be a physician, practitioner, nurse or other woman committed to health and wellness.Continue reading →
The JointHealth™ Arthritis Medications Report Card
How does your province compare?
During the last year, Arthritis Consumer Experts continuously monitored scientific and medication treatment advances that have the potential to affect the lives of those living with arthritis. The JointHealth™ Arthritis Medications Report Card summarizes and ranks these medication treatment advances and helps Canadians and their rheumatologists identify how their province measures up to other provinces in terms of providing reimbursement access to medications approved for autoimmune forms of arthritis.
The understanding of combination medication therapy allows people with arthritis to live healthier, more productive lives. To help prepare the arthritis consumer with the information they need to talk to their healthcare provider, this issue of JointHealth™monthly will also look at:
New arthritis medications on the horizon
The coast-to-coast discussion about a national pharmacare program
Take action now to improve your province’s drug formulary ranking
ABN reporters from Canada’s arthritis consumer organizations interviewed leading health professionals and researchers during last month’s CRA and AHPA annual meetings.
Beginning March 9, feature interviews will be posted on the ABN YouTube channel http://bit.ly/ABNYouTube. Please help us raise awareness about the important work going on in Canada by sharing the interviews with your organizational and social networks.
About Ms. Anita Chan
Anita is the Program Coordinator at ACE and iis responsible for research as part of the development and implementation of communications and public affair strategies. She plays a large role in media and social media outreach. She also coordinates special event plans and programs and is responsible for creative input into program design and implementation.