In this issue
- ACE Turns 20 in 2020
- Who ACE serves Today
- 2000 to 2005: Establishing the Grassroots
- 2006 to 2010: Pioneering Arthritis Advocacy
- 2011 to 2015: Raising Arthritis Awareness Across Canada
- 2016 to 2020: Serving More Than 240,000 Canadians Every Month
JointHealth™ insight Published May 2020
Arthritis Consumer Experts (ACE) is celebrating its 20th anniversary in 2020. Over the past 20 years, our team of dedicated staff—who live with arthritis—are guided by you, our members and subscribers, and our advisory board of leading scientists, medical professionals and informed arthritis patients. Every day, all day, we work and volunteer to serve our arthritis community and the public.
Since ACE’s founding in 1999, we’ve come a long way. So much has changed in 20 years. Our hairstyles, what we wear, the music we listen to, the phones we carry. But one thing has been constant. A group of people who understand exactly what you face daily, living with arthritis.
And today, that support community numbers more than 50,000 members of the ACE community across Canada and almost 20,000 followers and fans on social media. As our membership has grown, so has our reach. Each month, ACE now reaches more than 240,000.
ACE members often tell us how they count on us for support and how we get what they are going through. There’s no need to hide or minimize their experiences living with arthritis. Members also tell us how ACE has “changed their outlook and life and powered them to “come out of the disease closet” and become more comfortable to be open about their disease.”
ACE has also powered arthritis patients to make a lasting impact and difference for models of arthritis care. A staggering six million Canadians live with arthritis. ACE continues to provide education from the medical world and practical information on how to get involved in advocacy for our members. That is how one becomes a (em)powered patient. It starts by helping you feel stronger and more confident. ACE does this through our education programs like JointHealth™ Education and by arming you with the tools and knowledge you need to become an advocate for your health and for arthritis. ACE’s digital presence has grown dramatically the past decade and is successfully connecting people living with arthritis in Canada and around the world. To be in a community full of people that truly “get it” is a very special and empowering feeling.
Another of ACE’s missions has been to encourage our members to take action. Each of us has the power to change arthritis—together, we can change the way arthritis is perceived by the public, portrayed in the media, and understood by government.
As people with arthritis, and their family members and friends, our arthritis community is in an unique position to provide media, government, and healthcare decision-makers with the real story of arthritis. ACE leads numerous programs to raise awareness and advocate for arthritis patients at government and in the workplace, including the annual recognition of Canada’s Best Workplace for Employees Living with Arthritis.
But none of us can do this alone. One or two voices may be easy to ignore, but by speaking together, we are powerful. The voice of arthritis—the voices of all of the people who live with the disease, or care about someone who does—is strong and getting stronger every day.
To mark the 20th anniversary of ACE and the work we have done and continue to do on behalf of people living with arthritis, we would like to share a timeline of some of our milestones over the past two decades “changing arthritis” in Canada.Changing Arthritis
2000
The need of an authentic arthritis voice was the impetus for the founding of ACE; governments had low or no awareness of rheumatoid arthritis and how it should be treated. Our first Work Plan was solely focused on advocating for Health Canada to complete its review of etanercept and infliximab, then for reimbursement access on provincial and private drug formularies.
2002-2005
ACE “toured” across-Canada holding “Plan to Win” patient education forums focusing on rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis, and osteoarthritis.
In 2002, with co-authors John Esdaile, MD, and science writer Taysha Palmer, Cheryl Koehn, Founder and President of ACE, published "Rheumatoid Arthritis: Plan to Win”. The book offers an inspiring, scientifically based game plan for minimizing the effects of chronic illness and achieving optimal health.
2005-2006
ACE co-founds the Summit on Standards for Arthritis Prevention & Care. The Summit brought together, for the first time in our community, representatives from Canada's arthritis community—including formal and informal care givers, health care providers, government representatives (federal and provincial), arthritis researchers and clinicians, voluntary associations, the pharmaceutical industry, and people with arthritis—to develop definitive national standards for arthritis prevention and care.
2007
ACE launches the first issue of ACE’s Medication Guide and JointHealth™ Arthritis Medications Report Card—Canada’s first independent patient organization evaluation of public reimbursement access to arthritis medications.
2009
The development and roll out of the National Arthritis Awareness Program (NAAP) across Canada to inform the public about arthritis. As part of the NAAP, the arthritis community “hit the streets” in Vancouver, Calgary, Ottawa, Toronto, Montreal and Halifax to share information about arthritis. Over 100,000 Canadians were met on the street and provided information aimed to debunk myths and change Canadian’s perceptions of the effects arthritis has on our communities, our families and our lives.
2010
The premiere of the Arthritis Broadcast Network (ABN), the legacy channel of the National Arthritis Awareness Program. The ABN is a multi-media platform for the arthritis community to share news, information and stories about living well with arthritis. It conducts the #CRArthritis Facebook and Twitter Live event at the Canadian Rheumatology Association Annual Scientific Meeting and Arthritis Health Professions Association Annual Meeting.
2011
ACE launches ArthritisID and ArthritisIDPRO (for healthcare professionals) apps—the most comprehensive free arthritis apps for consumers, featuring current, evidence-based arthritis information to help detect, treat and manage arthritis.
2013
ACE announces a three year partnership with Shoppers Drug Mart Corporation—where Shoppers Drug Mart launched the Shoppers Health Care Portal, a website designed to provide Canadian health care professionals with access to drug reimbursement information and clinical tools with the goal of improving patient care. Click here to screen yourself for arthritis.
2014
The introduction of Canada’s Best Workplaces for Employees living with Arthritis—a national campaign to help employers better understand arthritis in the workplace and recognize companies who offer exceptional work environments for their employees living with arthritis. Some of the notable award winners over the past five years: TELUS, City of Ottawa, Simon Fraser University, L'Oréal Canada, Aboriginal Peoples Television Network, Government of Yukon, and Université de Montréal.
2016
ACE launches the JointHealth™ Education and Biosim•Exchange.
JointHealth™ Ed is an easy-to-use, online “classroom” that offers disease specific courses featuring lessons that are interactive and evidence-based. Each course gives you the key facts or “speaking points” to cover during your appointments with your rheumatologist and in your daily life with family, friends and co-workers.
The JointHealth™ Education program now includes five on-line courses:
ACE co-founds and serves as Secretariat of the Global RA Network with rheumatoid arthritis (RA) patient organizations and leaders from 18 countries (and growing). The Global RA Network builds international relationships and identifies and works on common goals and initiatives to improve the lives of people living with RA around the world. The Global RA Network’s first initiative was to conduct a survey on patient experiences of RA models of care.
2017
On stage at the American College of Rheumatology Annual Meeting, ACE presented an abstract on Patient Experiences of rheumatoid arthritis models of care: An international survey—the first crowd-sourced research of its kind designed by RA patients, for patients, to better learn what their care experiences are in 14 countries in Europe, the Middle East, and North and South America. The survey highlights self-reported gaps and delays in all five key elements of a standardized RA models of care, including significant delays to diagnosis and specialist access.
2018
ACE launched its first-in-class series of fact-based videos on biosimilars in Canada. The videos feature Dr. John Esdaile (University of British Columbia) and Dr. Susan Bartlett (McGill University) and cover the latest biosimilars research, patient education information, the “nocebo effect”, and public drug plan reimbursement policy development. Click on the Biosimilars Education Videos tab here to view the videos.
ACE hosted its inaugural Arthritis Broadcast Network #Greek2Street Facebook and Twitter Live event at the KT Canada Scientific Meeting. The aim of the campaign is to get language and ideas that sound like “Greek” out to the “street” so people can put scientific knowledge into action in everyday life. Click here to learn more and view the series of interviews.
The Women in Biz Network: RA Matters at Work Event (held in Vancouver, Toronto, and Montreal) helped illuminate the accessibility of career progression for people with chronic diseases like rheumatoid arthritis. Moderated by ACE president, Cheryl Koehn, event speakers included: Drs. Diane Lacaille, Susan Bartlett, and Sara Ahmed, Canadian Olympic snowboarder Spencer O’Brien and Canadian Olympic medalist in short-track speed skating Nathalie Lambert, and allied health professionals and arthritis patients, volunteers, and advocates Alexandra Sirois, Alison Stewart, Dawn Richards, Flora To-Miles, Julia Chayko, Karen Tsui, Laurie Proulx, Leigh Mitchell, Maya Joshi, and Rachel Dei-Amoah.
2019
ACE published an information guide—“Biosimilars in Canada: What inflammatory arthritis patients need to know”—to address those needs of patients who want information on biosimilar medicines. The guide provides answers to questions patients may have on biosimilars and provide them the information tools they need to power and support their conversations with their rheumatologists and other health care providers and ensure science-based continuity of care. Click here to view the guide.
2020
Over the past 20 years, the delivery of healthcare and information has changed. ACE’s new program "Arthritis At Home” builds on that experience and brings arthritis experts into patients’ homes through ACE’s social media channels. ACE launched Arthritis At Home during the coronavirus pandemic crisis, when most of ACE’s members are confined to home, facing even more challenges in their daily lives than they normally would. As Arthritis at Home evolves over time, it will focus on speaking to experts on issues that matter most to patients: improving models of care and powering patient access.
Listening to you
We hope you find this information of use. Please tell us what you think by writing to us or emailing us at feedback@jointhealth.org. Through your ongoing and active participation, ACE can make its work more relevant to all Canadians living with arthritis.
Update your email or postal address
Please let us know of any changes by contacting ACE at feedback@jointhealth.org. This will ensure that you continue to receive your free email or print copy of JointHealth™ insight.
Arthritis Consumer Experts (ACE)
Who We Are
Arthritis Consumer Experts (ACE) operates as a non-profit and provides free research based education and information to Canadians with arthritis. We help (em)power people living with all forms of arthritis to take control of their disease and to take action in healthcare and research decision making. ACE activities are guided by its members and led by people with arthritis, scientific and medical experts on the ACE Advisory Board. To learn more about ACE, visit www.jointhealth.org
Disclosures
Over the past 12 months, ACE received grants- in-aid from: Arthritis Research Canada, Amgen Canada, Canadian Institutes of Health Research, Canadian Rheumatology Association, Eli Lilly Canada, Hoffman-La Roche Canada Ltd., Knowledge Translation Canada, Merck Canada, Novartis Canada, Pfizer Canada, Sandoz Canada, Sanofi Canada, St. Paul’s Hospital (Vancouver), UCB Canada, and the University of British Columbia.
ACE also received unsolicited donations from its community members (people with arthritis) across Canada.
ACE thanks funders for their support to help the nearly 6 million Canadians living with osteoarthritis, rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis and the many other forms of the disease.
Disclaimer
The material contained on this website is provided for general information only. This website should not be relied on to suggest a course of treatment for a particular individual or as a substitute for consultation with qualified health professionals who are familiar with your individual medical needs. Should you have any healthcare related questions, you should contact your physician. You should never disregard medical advice or delay in seeking it because of something you have read on this or any website.
This site may provide links to other Internet sites only for the convenience of World Wide Web users. ACE is not responsible for the availability or content of these external sites, nor does ACE endorse, warrant or guarantee the products, services or information described or offered at these other Internet sites.
Although the information presented on this website is believed to be accurate at the time it is posted, this website could include inaccuracies, typographical errors or out-of-date information. This website may be changed at any time without prior notice.
Arthritis Consumer Experts (ACE) is celebrating its 20th anniversary in 2020. Over the past 20 years, our team of dedicated staff—who live with arthritis—are guided by you, our members and subscribers, and our advisory board of leading scientists, medical professionals and informed arthritis patients. Every day, all day, we work and volunteer to serve our arthritis community and the public.
Since ACE’s founding in 1999, we’ve come a long way. So much has changed in 20 years. Our hairstyles, what we wear, the music we listen to, the phones we carry. But one thing has been constant. A group of people who understand exactly what you face daily, living with arthritis.
And today, that support community numbers more than 50,000 members of the ACE community across Canada and almost 20,000 followers and fans on social media. As our membership has grown, so has our reach. Each month, ACE now reaches more than 240,000.
Who ACE Serves Today
Our community today trusts us to provide the latest in research through our education and information programs to people who need it, when and where they need it. Our advocacy work, such as the JointHealth™ Arthritis Medications Report Card, has been integral to developing and implementing new arthritis health policy these past two decades, making the best treatments more accessible and affordable. We’ve partnered with the research community to ensure they look for answers to questions that are most important to people like us—over 6 million Canadians living with arthritis.ACE members often tell us how they count on us for support and how we get what they are going through. There’s no need to hide or minimize their experiences living with arthritis. Members also tell us how ACE has “changed their outlook and life and powered them to “come out of the disease closet” and become more comfortable to be open about their disease.”
| Reach & influence: Approximately 240,000 each month |
8,250 members |
41,000 subscribers |
17,000 followers and fans |
ACE has also powered arthritis patients to make a lasting impact and difference for models of arthritis care. A staggering six million Canadians live with arthritis. ACE continues to provide education from the medical world and practical information on how to get involved in advocacy for our members. That is how one becomes a (em)powered patient. It starts by helping you feel stronger and more confident. ACE does this through our education programs like JointHealth™ Education and by arming you with the tools and knowledge you need to become an advocate for your health and for arthritis. ACE’s digital presence has grown dramatically the past decade and is successfully connecting people living with arthritis in Canada and around the world. To be in a community full of people that truly “get it” is a very special and empowering feeling.
Another of ACE’s missions has been to encourage our members to take action. Each of us has the power to change arthritis—together, we can change the way arthritis is perceived by the public, portrayed in the media, and understood by government.
As people with arthritis, and their family members and friends, our arthritis community is in an unique position to provide media, government, and healthcare decision-makers with the real story of arthritis. ACE leads numerous programs to raise awareness and advocate for arthritis patients at government and in the workplace, including the annual recognition of Canada’s Best Workplace for Employees Living with Arthritis.
But none of us can do this alone. One or two voices may be easy to ignore, but by speaking together, we are powerful. The voice of arthritis—the voices of all of the people who live with the disease, or care about someone who does—is strong and getting stronger every day.
To mark the 20th anniversary of ACE and the work we have done and continue to do on behalf of people living with arthritis, we would like to share a timeline of some of our milestones over the past two decades “changing arthritis” in Canada.
Changing Arthritis
For 20 Years
2000The need of an authentic arthritis voice was the impetus for the founding of ACE; governments had low or no awareness of rheumatoid arthritis and how it should be treated. Our first Work Plan was solely focused on advocating for Health Canada to complete its review of etanercept and infliximab, then for reimbursement access on provincial and private drug formularies.
2002-2005
ACE “toured” across-Canada holding “Plan to Win” patient education forums focusing on rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis, and osteoarthritis.
In 2002, with co-authors John Esdaile, MD, and science writer Taysha Palmer, Cheryl Koehn, Founder and President of ACE, published "Rheumatoid Arthritis: Plan to Win”. The book offers an inspiring, scientifically based game plan for minimizing the effects of chronic illness and achieving optimal health.
2005-2006
ACE co-founds the Summit on Standards for Arthritis Prevention & Care. The Summit brought together, for the first time in our community, representatives from Canada's arthritis community—including formal and informal care givers, health care providers, government representatives (federal and provincial), arthritis researchers and clinicians, voluntary associations, the pharmaceutical industry, and people with arthritis—to develop definitive national standards for arthritis prevention and care.
2007
ACE launches the first issue of ACE’s Medication Guide and JointHealth™ Arthritis Medications Report Card—Canada’s first independent patient organization evaluation of public reimbursement access to arthritis medications.
2009
The development and roll out of the National Arthritis Awareness Program (NAAP) across Canada to inform the public about arthritis. As part of the NAAP, the arthritis community “hit the streets” in Vancouver, Calgary, Ottawa, Toronto, Montreal and Halifax to share information about arthritis. Over 100,000 Canadians were met on the street and provided information aimed to debunk myths and change Canadian’s perceptions of the effects arthritis has on our communities, our families and our lives.
2010
The premiere of the Arthritis Broadcast Network (ABN), the legacy channel of the National Arthritis Awareness Program. The ABN is a multi-media platform for the arthritis community to share news, information and stories about living well with arthritis. It conducts the #CRArthritis Facebook and Twitter Live event at the Canadian Rheumatology Association Annual Scientific Meeting and Arthritis Health Professions Association Annual Meeting.
2011
ACE launches ArthritisID and ArthritisIDPRO (for healthcare professionals) apps—the most comprehensive free arthritis apps for consumers, featuring current, evidence-based arthritis information to help detect, treat and manage arthritis.
2013
ACE announces a three year partnership with Shoppers Drug Mart Corporation—where Shoppers Drug Mart launched the Shoppers Health Care Portal, a website designed to provide Canadian health care professionals with access to drug reimbursement information and clinical tools with the goal of improving patient care. Click here to screen yourself for arthritis.
2014
The introduction of Canada’s Best Workplaces for Employees living with Arthritis—a national campaign to help employers better understand arthritis in the workplace and recognize companies who offer exceptional work environments for their employees living with arthritis. Some of the notable award winners over the past five years: TELUS, City of Ottawa, Simon Fraser University, L'Oréal Canada, Aboriginal Peoples Television Network, Government of Yukon, and Université de Montréal.
2016
ACE launches the JointHealth™ Education and Biosim•Exchange.
JointHealth™ Ed is an easy-to-use, online “classroom” that offers disease specific courses featuring lessons that are interactive and evidence-based. Each course gives you the key facts or “speaking points” to cover during your appointments with your rheumatologist and in your daily life with family, friends and co-workers.
The JointHealth™ Education program now includes five on-line courses:
- JHEd: Rheumatoid Arthritis
- JHEd: Advanced therapies for Inflammatory Arthritis
- JHEd: Biosimilars Education Video Series
- JHEd: Psoriatic Arthritis
- JHEd: Ankylosing Spondylitis
ACE co-founds and serves as Secretariat of the Global RA Network with rheumatoid arthritis (RA) patient organizations and leaders from 18 countries (and growing). The Global RA Network builds international relationships and identifies and works on common goals and initiatives to improve the lives of people living with RA around the world. The Global RA Network’s first initiative was to conduct a survey on patient experiences of RA models of care.
2017
On stage at the American College of Rheumatology Annual Meeting, ACE presented an abstract on Patient Experiences of rheumatoid arthritis models of care: An international survey—the first crowd-sourced research of its kind designed by RA patients, for patients, to better learn what their care experiences are in 14 countries in Europe, the Middle East, and North and South America. The survey highlights self-reported gaps and delays in all five key elements of a standardized RA models of care, including significant delays to diagnosis and specialist access.
2018
ACE launched its first-in-class series of fact-based videos on biosimilars in Canada. The videos feature Dr. John Esdaile (University of British Columbia) and Dr. Susan Bartlett (McGill University) and cover the latest biosimilars research, patient education information, the “nocebo effect”, and public drug plan reimbursement policy development. Click on the Biosimilars Education Videos tab here to view the videos.
ACE hosted its inaugural Arthritis Broadcast Network #Greek2Street Facebook and Twitter Live event at the KT Canada Scientific Meeting. The aim of the campaign is to get language and ideas that sound like “Greek” out to the “street” so people can put scientific knowledge into action in everyday life. Click here to learn more and view the series of interviews.
The Women in Biz Network: RA Matters at Work Event (held in Vancouver, Toronto, and Montreal) helped illuminate the accessibility of career progression for people with chronic diseases like rheumatoid arthritis. Moderated by ACE president, Cheryl Koehn, event speakers included: Drs. Diane Lacaille, Susan Bartlett, and Sara Ahmed, Canadian Olympic snowboarder Spencer O’Brien and Canadian Olympic medalist in short-track speed skating Nathalie Lambert, and allied health professionals and arthritis patients, volunteers, and advocates Alexandra Sirois, Alison Stewart, Dawn Richards, Flora To-Miles, Julia Chayko, Karen Tsui, Laurie Proulx, Leigh Mitchell, Maya Joshi, and Rachel Dei-Amoah.
2019
ACE published an information guide—“Biosimilars in Canada: What inflammatory arthritis patients need to know”—to address those needs of patients who want information on biosimilar medicines. The guide provides answers to questions patients may have on biosimilars and provide them the information tools they need to power and support their conversations with their rheumatologists and other health care providers and ensure science-based continuity of care. Click here to view the guide.
2020
Over the past 20 years, the delivery of healthcare and information has changed. ACE’s new program "Arthritis At Home” builds on that experience and brings arthritis experts into patients’ homes through ACE’s social media channels. ACE launched Arthritis At Home during the coronavirus pandemic crisis, when most of ACE’s members are confined to home, facing even more challenges in their daily lives than they normally would. As Arthritis at Home evolves over time, it will focus on speaking to experts on issues that matter most to patients: improving models of care and powering patient access.Listening to you
We hope you find this information of use. Please tell us what you think by writing to us or emailing us at feedback@jointhealth.org. Through your ongoing and active participation, ACE can make its work more relevant to all Canadians living with arthritis.
Update your email or postal address
Please let us know of any changes by contacting ACE at feedback@jointhealth.org. This will ensure that you continue to receive your free email or print copy of JointHealth™ insight.
Arthritis Consumer Experts (ACE)
Who We Are
Arthritis Consumer Experts (ACE) operates as a non-profit and provides free research based education and information to Canadians with arthritis. We help (em)power people living with all forms of arthritis to take control of their disease and to take action in healthcare and research decision making. ACE activities are guided by its members and led by people with arthritis, scientific and medical experts on the ACE Advisory Board. To learn more about ACE, visit www.jointhealth.org
Disclosures
Over the past 12 months, ACE received grants- in-aid from: Arthritis Research Canada, Amgen Canada, Canadian Institutes of Health Research, Canadian Rheumatology Association, Eli Lilly Canada, Hoffman-La Roche Canada Ltd., Knowledge Translation Canada, Merck Canada, Novartis Canada, Pfizer Canada, Sandoz Canada, Sanofi Canada, St. Paul’s Hospital (Vancouver), UCB Canada, and the University of British Columbia.
ACE also received unsolicited donations from its community members (people with arthritis) across Canada.
ACE thanks funders for their support to help the nearly 6 million Canadians living with osteoarthritis, rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis and the many other forms of the disease.
Disclaimer
The material contained on this website is provided for general information only. This website should not be relied on to suggest a course of treatment for a particular individual or as a substitute for consultation with qualified health professionals who are familiar with your individual medical needs. Should you have any healthcare related questions, you should contact your physician. You should never disregard medical advice or delay in seeking it because of something you have read on this or any website.
This site may provide links to other Internet sites only for the convenience of World Wide Web users. ACE is not responsible for the availability or content of these external sites, nor does ACE endorse, warrant or guarantee the products, services or information described or offered at these other Internet sites.
Although the information presented on this website is believed to be accurate at the time it is posted, this website could include inaccuracies, typographical errors or out-of-date information. This website may be changed at any time without prior notice.
Arthritis Consumer Experts
ACE thanks Arthritis Research Canada (ARC) for its scientific review of ACE and JointHealth™ information and education programs.