CAPA, the Canadian Arthritis Patient Alliance is an incredible organization that recently joined the Access Our Medicine movement by adding their names to the Declaration. Among their members are some of the first people with Arthritis who received biologics in Canada. At the time, these innovative new medicines were game-changers, but Canada was slow to approve them. This meant that many patients suffered while just over the border a new, life-changing treatment was available. The cost of this treatment put access to arthritis medicine out of reach of many, while others made huge financial sacrifices to have access. The following is a story from Linda, a CAPA member who bravely shared her experience with us about access to arthritis medicine:
I was diagnosed with a particularly severe and aggressive form of Rheumatoid Arthritis (RA) in 1984 at the age of 24, with a newborn baby and a two year old. The next decade and a half were all about trying to find a medication to control the disease though none were particularly effective.
Four years later, in 1998 there were no new drugs that were approved in Canada for me to try. Certain new treatments had been approved by the FDA in the US but Health Canada could provide no timeline for approval here. They did not consider RA a serious enough condition to warrant special access! Since these new drugs cost approximately $25,000 per year my future looked pretty bleak. After spending the majority of 1998 in bed, 1999 saw me in hospital for three months; this was a trying year and a half during which I was unable to care for my children or participate in normal, everyday activities.
During my extended hospital stay my husband went to a local town hall meeting with our elected representative. Everyone was complaining about the condition of the roads and issues around schools but Kerry was focused on getting me back home and returning to me some quality of life. He challenged our MLA to come to the hospital to see me. Surprisingly, the MLA showed up in my hospital room a few days later! As a result of that visit I was able to get a meeting with the Southern NB Caucus of MLAs. On a day pass from hospital, my husband carried me into that meeting and I told them about what my life was like. I told them how this new drug could be my only hope to return home to be with my family, that was available just across the border.
Three weeks later, one week after my first injection of the drug called Enbrel, after spending the year in a wheelchair, I walked out of the hospital. There would be several more hospital stays to repair damage done to my joints but fifteen years later I am still mobile and have dedicated my life to helping to improve the lives of others living with devastating diseases like mine.
No one should have to put their life on hold because they are unable to access a medicine that could help them live a life with less pain and disability. Working with the Canadian Arthritis Patient Alliance, I see too many people who are struggling to access arthritis medicine because of the cost. That’s why I’ve signed the Declaration for Affordable Medicine and I invite you to join me by adding your voice at www.accessourmedicine.com.