JointHealth™ insight   July/August 2006

This online issue of JointHealth™ monthly seeks your important views on how to implement the priority Standards for Arthritis Prevention and Care, and says thank you to its community members and readership for sharing and interacting with ACE by phone, letter and email over the past 12 months. We hope you find this issue informative and wish you a safe and pleasant summer.

Listening to you

Questionnaire - Survey: Help implement the Alliance for the Canadian Arthritis Program's Standards for Arthritis Prevention and Care

How do think priority one and three of the Standards for Arthritis Prevention and Care should be carried out?

In November 2005, the Alliance for the Canadian Arthritis Program (ACAP) hosted the Summit on Standards for Arthritis Prevention and Care in Ottawa. Approximately 200 arthritis community and government delegates discussed and deliberated the needs of Canadians living with arthritis. After two days, 12 standards were put forward as a foundation for a Canadian arthritis strategy. Three achieved priority status (see below).

In this issue of JointHealth™ monthly, ACE is asking its community members and readers how they think priority standards one and three can become a reality. Your ideas and input are important, especially as people living with arthritis or caring for people living with arthritis.


On January 24th 2006, the Steering Committee for the Alliance for the Canadian Arthritis Program met in Toronto to determine "next steps" for implementation of the standards. Each standard was reviewed and discussed with the respect to importance to people living with arthritis (i.e. potential to reduce the burden of arthritis in our population) and the feasibility of implementing the standard in Canada to make a discernible difference in their lives within one to two years. Consideration was also made of the ongoing activities of each of the stakeholder arthritis organizations in terms of what was unlikely to happen without the collective energy of the entire arthritis community behind it.

Based on these daylong discussions, the following three standards were identified as requiring the arthritis community's and federal and provincial governments' immediate attention:
  1. Every Canadian must be aware of arthritis.
    The ACAP, through its Provincial Government Relations Teams and member organizations, will undertake a number of strategies to increase Canadians' awareness of arthritis. This will include public awareness campaigns directed at the Canadian public and the development and implementation of an "Arthritis 101" program directed at elected officials and government health policy makers.

  2. All relevant health professionals must be able to perform a valid, standardized, age-appropriate musculoskeletal screening assessment.
    The "Access to Diagnosis" Team will formally evaluate the reliability and validity of various arthritis screening tools in order to determine the optimal candidate tool or tools. Once the tool(s) is determined, key leaders within the arthritis community will liaise with medical and allied health professional schools to encourage training of relevant health professionals in performance of the screening assessment, and with the professional licensing bodies to encourage that evaluation of competency in performance of the assessment is incorporated into the accreditation process. Continuing medical education strategies will be used to disseminate the tool(s) to relevant health providers in established practice. Links with the Canadian Medical Association to assist in this dissemination will be sought.

  3. Every Canadian with arthritis must have timely and equal access to appropriate medication.
    A sub-committee of ACAP will be established to examine the current situation in Canada with respect to access to medications currently recommended for the management of arthritis and osteoporosis. This sub-committee will also assess the scientific evidence to support the "life-saving" or "quality-of-life saving" effects of these medications. Once this information has been assembled, the

    sub-committee will make recommendations to ACAP regarding the next steps, including whether or not there is evidence to support the need for a federally funded drug plan for so-called life-saving medications for arthritis.

Please help ACE help all Canadians with arthritis by filling out the questions below, along with your thoughts and ideas on how the priority standards one can achieved. Your input will help determine what action to take to ensure that all Canadians have equal access to appropriate arthritis medications and treatment.

Listening To You

Thank you for making ACE programs and services the best they can be

It is important to Arthritis Consumer Experts (ACE) to find out what you think about the programs and services it provides to Canadians with arthritis across the country. At ACE, we conduct consumer initiated research to find out how you feel and what you want from year to year. We do this through our post workshop surveys and through our newsletter, JointHealth™ monthly section, 'Listening to you', both in print and on-line, JointHealth™, and by receiving direct feedback from the public through the ACE website.

The information from the surveys is analysed and compiled in the form of statistics along with the written comments, and provided to the research community and government to ensure that your voices are being heard, and to continually improve upon the programs and services we provide to people with arthritis.

ACE would like to thank all workshop participants and JointHealth™ monthly and JointHealth™ express readers who filled out surveys. This feedback was critical to helping ACE fine tune and improve its evidence-based workshops and publications, and increase its reach in terms of awareness building and advocacy leadership across Canada. Also, feedback received over these past 12 months drove the development of the ACE work plan for 2007.

Thanks to you, the ACE community member and the interested public, here is a brief report on work completed thus far on behalf of Canadians living with arthritis.

ACE held several different types of evidence-based educational workshops across Canada. Information about the workshop dates and venues were listed in ACE's newsletter, JointHealth™ monthly that is sent to its community members, both individuals and rheumatologists offices along with other health care professionals.

In 2005, ACE offered twenty educational workshops across Canada, from Vancouver Island to Nova Scotia, with four of the workshops offered in French. While the leadership of the workshops remained the same -a rheumatologist and a person with arthritis spoke at each one - the content changed to reflect the information needs of people living with arthritis.

For example, ACE offered three different types of workshops covering rheumatoid arthritis, ankylosing spondylitis and a combined workshop for osteoarthritis and osteoporosis. As in years past, every participant was provided a take-home package that included a copy of the workshop presentation which included over 100 slides of evidence-based information.

The newest ACE workshop in the line up - Plan to Win with Ankylosing Spondylitis - was offered in six cities across Canada. This was the first national workshop program on ankylosing spondylitis in Canada and the medical speakers were the country's foremost researchers and clinicians treating this type of inflammatory arthritis. The high number of workshop participants and their overwhelming positive feedback denoted the success of this program; 92% of attendees considered the workshop a worthwhile event.

In 2006, ACE's Fall workshop series is offering a combined workshop that includes information on rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis, osteoarthritis and osteoporosis. Again, based on your feedback, the question and answer period during the evening's program is extended to one and one-half hours for each three hour workshop. ACE survey respondents reported that the hour long question and answer session at the workshops is enjoyable and very useful. During this time the participants can ask the rheumatologist and patient advocate questions they have regarding arthritis and osteoporosis. Following the workshops, ACE continues to encourage your questions and comments through the JointHealth™ monthly in the Listening to you section. As well, you can write or email ACE at: and ask or comment on an arthritis related subject.

In some provinces, The Arthritis Society is partnering with ACE and providing information about the services and programs they have available for people with arthritis. The workshop will also highlight the Standards for Arthritis Prevention and Care, a national initiative by the Alliance for the Canadian Arthritis Program. As always, each workshop participant will be given a free copy of the presentation as an information resource to take home for future reference.

ACE continues to build it's website to be fully bilingual. ACE added a French registration page and the ability to register for its evidence-based education workshops on-line in French. JointHealth™ monthly is also now available in French (both on-line and in print), as is its news breaking information publication called, JointHealth™ express has both languages in a side by side format.

ACE's outreach expands each year with new workshop participants also requesting to receive the JointHealth™ monthly newsletter along with the JointHealth™ express on-line newsletter. The monthly newsletter is available both on-line and in print and packages of 22 go out to over 400 rheumatologists, other allied health care offices and arthritis stakeholder groups. This is an excellent avenue for people with arthritis to get access to evidenced-based information and many call or email ACE to subscribe to its newsletter. ACE reaches over 1800 people through the email system and sends out individual newsletters through the mail system to approximately 1300 people across Canada.

The newsletters, both on-line and in print feature articles on the latest research for arthritis for medications, exercise, prescription medication coverage and personal stories written by people with arthritis - see the January 2006. In 2005 ACE provided more coverage of advocacy with its involvement in the Standards of Care for Arthritis Prevention and Care and asking ACE's community members to become involved by writing a letter to their MLA/MPP or their MP about the importance of getting the importance of arthritis and arthritis care recognized at the provincial and national levels of government.

In the area of outreach and advocacy, ACE had a banner year by continuing its work with the provincial and federal levels of government advocating for continued reform of Canada's health care system, from drug review reform to access to care issues.

A major undertaking was the development - along with the Arthritis Research Centre (ARC) of Canada, and the Canadian Arthritis Patient Alliance (CAPA) - of an arthritis awareness initiative called Arthritis 101: Making British Columbia the Best in Arthritis Care in Canada ("Arthritis 101"), This research-based awareness event designed for Members of the Legislative Assembly (MLAs), provided an overview of the state of arthritis in BC, recent arthritis research advances and a set of recommendations of what the government could do to improve arthritis treatment and care for 500,000 British Columbians living with the disease. The event also included arthritis prevention and detection screening clinic for MLAs and their staff in the Legislature building. During the screening, five new cases of inflammatory arthritis were discovered.

Arthritis 101 was piloted to the BC provincial government with the goal of expanding the program throughout the country at provincial and federal levels. "Arthritis 101" was a tremendous success and had a large turnout: twenty-two MLA (four were Cabinet Ministers) along with fourteen MLA assistants, attended the event. This was one of the best turnouts ever for an event of this kind. ACE presented the concept for Arthritis 101 to the Steering Committee of the Alliance for the Canadian Arthritis Program (ACAP) in January 2006, and the ACAP member organizations (ACE, ARC and CAPA among them) will take the initiative across the country in Fall/Winter 2006.

Another major ACE activity in 2005 was its support and participation in the Summit for Standards for Arthritis Prevention and Care that took place in Ottawa in November 2005. The Summit - a gathering together of over 20 leading arthritis stakeholder groups and organizations - was Canada's largest community-led advocacy initiative ever, and ACE President, Cheryl Koehn, served as one of four Summit co-chairs. Her specific volunteer duties included leading the dedicated group of people working on government relations related planning tasks, as well as serving on the Summit Planning Committee.

The Summit proved to be a breakthrough for the arthritis community. It resulted in the creation of 12 definitive "standards" for arthritis prevention and care. Following the Summit, ACE and the other organizations involved committed to helping with the implementation of three priority standards. Click here to read more about the Standards for Arthritis Prevention and Care.)

In keeping with ACE's mission statement, it will continue to advocate for the education and awareness of arthritis for all Canadians. It is important that arthritis needs are known at the provincial and federal government levels as this is where decisions regarding health policy are made.

Again, ACE's extends its sincere thanks to all ACE community members and JointHealth™ monthly and JointHealth™ express readers for their moral support and guidance. If you have questions or comments regarding ACE activities in 2005, 2006 or 2007, please write or email at:


ACE 2006 workshop schedule - including venues

Arthritis Consumer Experts is excited to tell you about its fifth annual research-based education workshop series. In 2006, ACE will focus on supporting the Alliance for the Canadian Arthritis Program (ACAP) by conducting 10 free workshops across Canada. As always, ACE workshops will be co-led by a leading local rheumatologist and arthritis patient advocate. The focus of the JointHealth™ workshop series is to provide people with arthritis, their family members, and friends with the most up-to-date research-based information available and address participants’ specific concerns and questions. We will feature information about the prevention and treatment of rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis, osteoarthritis and osteoporosis.

September 12 : Halifax, NS. Halifax Radisson, 1649 Hollis St.
September 13 : Fredericton, NB. Delta Fredericton, 225 Woodstock Rd.
September 14 : Montreal, QC. (in French) Best Western Ville Marie, 3407 rue Peel.
September 14 : St. John's, NL. Fairmont Newfoundland, 115 Cavendish Square.
September 19 : Winnipeg, MB. Radisson Winnipeg Downtown, 288 Portage Ave.
September 20 : Regina, SK. Delta Regina, 1919 Saskatchewan Dr.
September 21 : Edmonton, AB. Westin Edmonton, 10135 100th St.
September 26 : Ottawa, ON. Cartier Place, 180 Cooper St.
September 27 : Toronto, ON. Best Western Primrose, 111 Carlton St.
October 3  : Victoria, BC. Empress Hotel, 721 Government St.

Pre-registration is required, but attendance and a detailed information package are FREE at all ACE workshops.

Please note all workshops will be held from 6-9pm to accommodate people who work during the day.

* We are able to provide these workshops without charge because we receive funding as unrestricted grants from private and public organizations. However ACE does not promote any "brand", product or program on any of its materials or its web site, or during any of its educational programs or activities.

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 Through your ongoing and active participation, ACE can make its work more relevant to all Canadians living with arthritis.

Over the past 12 months, ACE received unrestricted grants-in-aid from: Abbott Laboratories Ltd., Amgen Canada / Wyeth Pharmaceuticals, Bristol-Myers Squibb Canada, GlaxoSmithKline, Hoffman-La Roche Canada Ltd., Merck Frosst Canada, Pfizer Canada and Schering-Plough Canada, UCB Pharma Canada Inc. ACE also receives unsolicited donations from its community members (people with arthritis) across Canada.

ACE thanks these private and public organizations and individuals.