The voices of arthritis consumers

Consumers and researchers gathered in Halifax from Oct. 11-13 for The Canadian Arthritis Network’s (CAN) Annual Scientific Conference. This event was a mix of veteran consumers and “newbie’s” and was likened to the running of a marathon for many of us.

The conference kicked off the evening before sessions began with an event to bring together research trainees and consumers in an ice breaking dinner boat cruise. The following day the Consumer Advisory Council (CAC) held its meeting, which included a luncheon with the trainees during which the consumers held a panel discussion on various aspects of living with different types of arthritis. During the morning session new co-chairs of the Council were selected and are Delia Cooper and Marg Elliott. CAPA Steering Committee members Louise Bergeron represents the CAPA Research Committee and Corrie Billedeau represents Patent Partners in Arthritis. The new representative for Atlantic Canada on CAC is CAPA V.P., Linda Wilhelm. Active consumers in the arthritis community are apt to wear many hats, and this is true of CAC with every CAC member also belonging to CAPA and other organizations.

The next two days saw consumers jetting from one scientific session to another to learn about the latest in research, participate in judging Posters, and also fit in CAN committee meetings. Overall, consumers were integral to the success of the Annual Scientific Conference. One panel particularly emphasized that arthritis research is about improving the life of arthritis patients. Louise Bergeron presented on the experience of living with Lupus, Marg Elliott on living with OA, Delia Cooper on living a life with JIA, followed by the moving and powerful presentation by France Gervais, an incredible young woman and new mother, on how the healthcare system let her down over many years in her valiant effort to live a successful life with inflammatory arthritis. Her presentation brought the audience and her co-panelists to tears. This is the first time any of us have seen a researcher cry at a conference.

France's presentation and the reaction it received brought Senator Pat Carney, a member of the CAN Board of Directors and a staunch arthritis advocate, to her feet. She declared that the healthcare system does not meet the needs of people with arthritis and that as people living with arthritis each of us must make our voices heard. As CAPA members we are doing just that.