Twenty Years of Patients Working for Patients

As 2022 draws to a close, I reflect on the important work the Canadian Arthritis Patient Alliance has done over the past two decades. The vision of Denis Morrice, The Arthritis Society CEO in 2001 and Ann Qualman, a long term Rheumatoid Arthritis patient, who both strived to give people living with arthritis a real voice materialized with the creation of CAPA. The road was at times bumpy. In 2001, patients being involved in health policy development and research was rare. Many people believed there was no place for us at the table. Denis fought against this antiquated thinking and opened up the door despite strong opposition from the National Board at the time. We were all set to hold our first advocacy event on Parliament Hill in September 2001 and with 9/11 the world we all knew changed.  The event was postponed until January 2002 and the Arthritis Bill of Rights and Responsibilities was officially launched.

Advocacy was important as new, costly biologic drugs had just been approved by Health Canada. We knew that getting governments and insurers to pay for a drug for a disease that they believed was merely “aches and pains” was going to be an uphill battle. We worked tirelessly and met with governments across Canada. By 2003,every province had listed the new medications, completely transforming the lives of so many people and in turn, increasing the awareness of inflammatory arthritis.

In 2005, CAPA severed formal ties with The Arthritis Society and became an independent, not for profit, volunteer patient organization. Shortly after, my six-year term on the Steering Committee was complete and I moved on to the Canadian Arthritis Research Network (CAN) but we kept strong ties with CAPA. In 2010, CAN’s funding ended, and I was invited back to CAPA – this time as President. With new board representation, CAPA was invigorated and energized. One of our first initiatives was to update the Arthritis Bill of Rights and Responsibilities, renaming it the Arthritis Patient Charter and continued to represent the patient voice to government, clinicians and researchers always looking to empower patients to better manage their arthritis. We regularly reach out to our community to better understand the gaps and challenges they face, developing resources like our Methotrexate resource for kids with arthritis, coping with chronic pain and Arthritis, Then and Now.

Patient engagement is now mainstream. I hope we never end up back to where we started and it is that fear that pushes me to keep going. I believe the door has been flung wide open and closing it would be very difficult. There are still barriers and challenges and those who question the value of the patient voice but we must keep moving the bar and broadening the representation of patients so everyone’s voice is heard.

CAPA was virtual before COVID-19 made it fashionable. We wanted to create a community accessible to everyone. Our profound thanks to our current and past Board members and the broader arthritis patient community who have contributed to this amazing body of work. It really does take a village to ensure patients are meaningfully engaged in research and policy making.

Happy New Year!

Linda Wilhelm