Pushing boulders up hill:  The view from the top

In my neighbourhood seeds are sprouting, flowers bloom in bright, impossible colours, hay fever is rampant, and sneezes compete with birdsong as the official sound of Spring. But around CAPA we also hear the sound of clapping. CAPA has news.

CAPA defines advocacy as education with persuasion. It can be as simple as talking with your neighbour about your sore knee, as straightforward as writing a letter to the editor, or as complex as meeting with the Minister of Health after years of trying to get an appointment. It's all advocacy, and it all counts even if it sometimes feels like pushing boulders up a hill or knocking on firmly locked doors. We do our homework, we never give up, and that persistence and effort pays off. I'd like to share with you some recent, sweet successes.

Linda Wilhelm, is a CAPA V.P., and Chairs the Access to Medications Committee. She has fought tirelessly for access to biologic medications for New Brunswick, and Atlantic Canada, and equity of access for all Canadians, and is a constant critic of unsound health policy decisions. She writes letters – lots of letters. She is recognized by the government of NB as an informed arthritis and health advocate. Beginning this month, her influence will increase. Linda has received a four-year ministerial appointment to one of NB's Regional Health Authority Boards. We congratulate her!

The National Pharmaceutical Strategy (NPS) steering group held 'information' sessions across the country on very short notice, and by invitation only. CAPA believes that patients must be full stakeholders in the discussion and planning of NPS. We've paid close attention, and had well-informed advocates prepared to attend some of these sessions. It was not to be. So, CAPA wrote a letter to the Minister of Health, copied to the Co-Chairs of the NPS information sessions, that said in part that restricted access to these meetings reflected poorly on the federal government's commitment to openness and transparency in the development of a practical and effective NPS. Almost by return e-mail an invitation was extended to attend the May 26th information session in Ottawa for national organizations. Letter writing works.

For years CAPA knocked on the door of the Canadian Coordinating Office for Health Technology and Assessment (CCOHTA), the parent organization of the Common Drug Review (CDR), of the Canadian Expert Drug Advisory Committee (CEDAC), and the Canadian Optimal Medication and Utilization Service (COMPUS),. The parent organization is now called Canadian Agency for Drugs and Technologies in Health (CADTH). It is where the Health Technology Assessment occurs and the recommendations are made to list or not list medications on formularies. The door always remained closed. But CAPA and the Cochrane Musculoskeletal Group (CMSG) teamed up and submitted an abstract for the April 3-4, 2006 CADTH invitational symposium. It was selected for presentation, and Nancy Santesso, (CMSG), and I will report on our joint presentation in the next edition of Voices. Persistence and collaboration work.

From the beginning CAPA has been involved in research: Encouraging good research, participating in research, helping to set the research agenda, involved in the ethics of human research, and the conveyance of the information gained from research to those who can make good use of it – patients. Our consistency, dedication and initiative in this area has paid off. Because of what has been identified as our “initiatives in the area of consumer participation” CAPA has been asked by Health Canada to identify interested members who could become part of the Peer Review Committee to review grant applications for research projects submitted to the Health Canada's Natural Health Products Research Program. Caring and dedication work.

We win a few, but there's much to be done. For instance, we must help implement the Standards for Arthritis Prevention and Care (SAPC) that resulted from the groundbreaking SAPC conference in 2005. To start the ball rolling in the Fall, a program called Arthritis 101 will be presented in provincial legislatures across Canada. MLA's and their staff will be treated to breakfast, a quick and thorough introduction to arthritis, and have the opportunity to be screened for arthritis by rheumatologists and other health professionals. The prototype was presented in Victoria last year and several cases of undiagnosed inflammatory arthritis were detected. Participants were enthusiastic and media interest was high. A presentation like this is another form of advocacy that raises awareness. By working together through our advocacy efforts we make life better for all Canadians with arthritis.