News - January 2015
by: Linda Wilhelm
As October 2014 was winding down, members of the Canadian Arthritis community, including the entire Board of The Canadian Arthritis Patient Alliance, gathered in Toronto for the 2nd Annual Arthritis Alliance of Canada (AAC) Conference and Research Symposium. The three day conference was jam packed, beginning on Thursday, October 30 with a series of four concurrently held workshops facilitated by the sub-committees of the AAC; The Advocacy and Awareness, Consumers/Patient Organizations, Arthritis Health Professionals Association and Research. Each Committee provided an update of their current activities and the initial feedback from workshop participants is that they found these workshops valuable in providing an excellent overview of the work currently being undertaken by the Arthritis Alliance.
Friday, October 31 was the research symposium portion of the conference. The AAC was proud and honoured to have partnered with the esteemed Gairdner Foundation and The Institute of Musculoskeletal in Health and Arthritis on this portion of the conference. We were all excited and honoured that the 2014 Gairdner Award recipients, Sir Marc Feldman and Sir Ravinder N. Maini, two gentlemen who changed the lives of so many of us by discovering the first anti-TNF biologic therapy for inflammatory arthritis were on the conference agenda. As a patient whose life was dramatically changed for the better by the drugs they discovered, it was fascinating to have these two researchers present on their work and to also hear from many others on future treatments for the devastating diseases so many of us live with.
The day finished off with a gala dinner featuring The Two Sirs, as they have become widely and affectionately referred to in our community. The evening highlight for those living with arthritis was the inaugural presentation of the Qualman-Davies Consumer Leadership Award to Catherine Hofstetter, a long time CAPA member and patient advocate. The award was instituted to pay tribute to two pioneer patient advocates, Ann Qualman and Jim Davies who sadly, are no longer with us but who will always be remembered for blazing trails for the rest of us. Ann’s husband, Harry, and Jim’s spouse, Norma, were present to see the impact these two have made on the lives of people living with arthritis in Canada. Cathie Hofstetter gave a moving acceptance speech that brought many of us to tears in between bouts of laughter. We were also treated to performances by those living with arthritis - a testimony of all we can do despite living with serious, life changing diseases.
The conference wrapped on Saturday, November 1 with the AAC Annual General Meeting that included a discussion of the organization’s plans for the coming year. After the AGM, there were three workshops to build and gather input from the membership on current AAC activities: Performance Measurements for Inflammatory Arthritis Care, Osteoarthritis Models of Care and a planning workshop for submitting a grant application for the CIHR’s Strategy for Patient Oriented Research (SPOR).
When the conference finished, the CAPA Board held its annual day and a half in-person meeting to discuss CAPA priorities and work for 2015.
by: Marie-Eve Veilleux
On October 18, 2014, I had the pleasure of attending the 1st Forum on Arthritis organized by Québec division of The Arthritis Society. The event gathered 940 participants, speakers, vendors and partners. In addition to sessions for the general public, continuing education sessions were offered to health professionals. Topics discussed were chosen to reflect what was important to patients, caregivers and health professionals.
The general public could choose between over 30 options, most were in French, but some were available in English as well, that ranged from disease-specific information to tools to improve quality of life and coping with the disease. People from all ages and all diagnoses could find something that would interest them.
As for me, in the morning, I attended a session given by fellow consumer Jean Légaré on who pays for prescription drugs in Québec where he explained terms such as co-insurance and deductible (refer to picture below). Then, I went to a presentation of the results of a literature review of complementary and alternative medicine such as chiropractic, special diets or natural health products. I also attended another talk on insurance aimed at understanding drug plans. To my surprise, some health professionals attended the general public sessions even if they had their own separate sessions.
The general public and health professionals also came together several times throughout the day as some activities were open to everyone who bought a ticket. During the lunch break, three researchers, Eric Boilard, Philippe Tessier and Paul Fortin discussed the state of arthritis research in Québec and in Canada. At the end of the day, a cocktail featured a discussion panel around arthritis in the workplace. The dinner reception focused on models of care and patients had the opportunity to get a sense of what scientific conferences were like as researchers and clinicians took turns to present their initiatives and then answered questions from the public.
I left the event very pleased that patients were included in some of the scientific presentations that would normally be offered only to a few lucky consumers. I believe that the attendance of both patients with researchers and clinicians during such events is essential to the advancement of research and health care. I do hope that this model will be replicated by other provincial divisions of The Arthritis Society as well as other research and health organizations dedicated to arthritis.
Photo: Jean Légaré, consumer and patient with arthritis comments during a presentation on work and arthritis. Courtesy of The Arthritis Society.