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“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:

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New online forum to improve biosimilars education

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.

Biosim Exchange Banner“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.

To view the Biosim•Exchange, please click here: http://bit.ly/JHBiosimExch.

ACE encourages you to share the Biosim•Exchange with other patients, your friends and family.

We look forward to your questions and comments and hearing about your experience with biosimilars.

JointHealth™ insight – September 2016

Roughly one in five Canadians live with arthritis. Where is our social movement?

JHI September 2016 Slide ImageCheryl Koehn, Founder and President of Arthritis Consumer Experts (ACE) wants to start a movement for arthritis. In this issue of JointHealth™ insight, she comments about the myth of arthritis:

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.

To celebrate Arthritis Awareness Month in Canada, this issue of JointHealth™ insight will also highlight two of ACE’s programs:

  • Canada’s Best Workplaces for Employees Living with Arthritis Award
    This year’s program will recognize workplaces who provide an environment that meets the needs of employees living with arthritis to manage their disease and work with symptoms such as pain, fatigue, joint dysfunction or immobility
  • Biosim•Exchange
    A reader-friendly information hub for consumers and health care professionals to get the latest biosimilars news.

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