Arthritis: Your stories, our initiatives, and the scholarship program

Last year at this time I wrote about the roses blooming in my garden and the perfect prairie-blue sky. Not this year. The best it gets are some soggy yellow-brown patches of grass like small islands in a sea of white. It's apparently the best Mother Nature can do. It's little wonder that for centuries Spring festivals have celebrated growth and renewal with the promise that the 'dead' trees of winter will sprout green leaves of Spring. I want to put away mitts, toques and winter boots. My calendar says it's Spring! I want flowers!

Students may appreciate flowers, but what they really want is help with tuition to continue their education. At this time of year they look forward to continuing their education in the Fall while wondering if they can afford it. CAPA is delighted that the UCBeyond Scholarship Program is again being offered to post secondary students with rheumatoid arthritis (RA). UCB Pharma Canada launched this program in Canada in 2007 with CAPA's help, and the response was phenomenal. This scholarship celebrates determination in the face of debilitating disease and vision in the pursuit of dreams through education. CAPA is happy to again be involved. We urge everyone to spread the news so post-secondary students of all ages learn about this opportunity for students – and would be students - with RA.

CAPA and our sister organization, Arthritis Consumer Experts (ACE), have been asked to participate on the Editorial Board of the next edition of Arthritis in Canada. In January we asked for your experience as someone living with arthritis to help readers of the next edition (Fall 2008) understand what having arthritis really means to individuals, families, the economy, and the health care system. Within five days of making our request we had received over 100 terrific responses and they just kept coming! We are overwhelmed and grateful that you have shared glimpses into your lives with arthritis. The selected stories, told in the writer's words, will breath life into the growing statistical picture of this cruel disease that affects over 4.5 million Canadians and costs so much. Thank you! The 2008 edition of Arthritis in Canada will provide even more information than the highly informative 2003 edition.

On January 19, CAPA sent out a News Update concerning the availability of effective biologic medications to Ankylosing Spondylitis (AS) patients in Alberta. The Common Drug Review endorsed the use of adalimumab (Humira®) for AS, and clinical trial results also demonstrate the effectiveness of both infliximab (Remicade®) and etanercept (Enbrel®) in treating aggressive disease. All three of these interventions are considered to be best practice treatments by experts in treating AS, and these same drugs are already available to Albertans with some other forms of arthritis. CAPA played a leading role in the collaborative effort to persuade Alberta to add these drugs to their drug formulary for this indication. The Alberta election has come and gone, and as of this writing there is still no indication that AS patients in Alberta will have access to these appropriate and proven treatment options.

The situation in Saskatchewan is very different. For well over a year letters were written to the Saskatchewan Minister of Health calling on him to reverse the decision to 'decline to add' these biologic medications for AS to the formulary. Saskatchewan had its election last Fall. To his credit, the new Minister of Health wrote the CAPA Steering Committee member from Saskatchewan after his appointment saying the decision of the formulary committee was being revisited. I'm happy to report that on February 15, etanercept (Enbrel®) and adalimumab (Humira®) were given Exceptional Drug status and added to the Saskatchewan Drug Formulary for the treatment of AS. We applaud the new government for taking this action. Unfortunately, infliximab (Remicade®) was not included in this decision. Because each patient reacts differently to medications all approved interventions must be available so the best treatment decisions for “this patient, with this condition, at this time” can be made. Collaborative advocacy has helped Saskatchewan AS patients have access to some of the best practice treatments they may need. We are waiting for Alberta to make a similar decision. There's more work yet to be done.