September 2017 News
By: Lene Andersen
Ontario has a new opioid strategy and it’s missing the voices of Ontarians who live with chronic pain.
One in five Canadians have chronic pain. The cost of chronic pain is more than the combined cost of cancer, HIV and heart disease. Direct healthcare for those who live with pain exceed 6 billion annually, and lost productivity is $37 billion.
For many who live with chronic pain, opioids are an important part of their pain management program. Without these types of medications, so many of us would be unable to function and participate in our families, communities, and work.
“I was struggling with the pain of unmanaged RA (rheumatoid arthritis) trying to be a parent to my three children in the mid-nineties. I had run out of disease modifying drug options and it was opioids that gave me enough relief that I wasn't a miserable and horrible mother,” said Linda Wilhelm, President of the Canadian Arthritis Pain Alliance (CAPA)
Despite this social and personal cost of pain, consultations for the Ontario. Strategy were weighted heavily towards issues related to addiction. Organization providing feedback included regulatory colleges, medical personnel, public health, community addiction agencies, and even veterinarians. Chronic pain clinics were included on the list, but no patient organizations. (1)
Granted, the official name of this new initiative is Strategy to Prevent Opioid Addiction and Overdose. Still, it is impossible to address this issue in isolation from the responsible use of opioids experienced by so many individuals with chronic pain. The strategy dedicates $222 million over three years to address the “opioid crisis,” but only $17 million per year will be dedicated to multidisciplinary disciplinary care teams, including the creation of 17 chronic pain clinics (2).
Considering with the cost of chronic pain, this seems a fairly underwhelming nod to the chronic pain community, especially contrasted with the delisting of high-strength long lasting opioids from the Ontario Drug Benefit programs, stricter controls on the prescribing of opioids, and emphasis on non-opioid pain management techniques.
Of course something needs to be done to prevent addiction and overdose. But like many others of its kind, the Ontario opioid strategy seems to not take into consideration the 20 percent of its population who mostly uses opioids responsibly and for whom it is a necessary part of life. I would like to see more awareness of the research surrounding opioids. For instance, that when prescribed and taken correctly, opioids result in addiction in only one quarter of one percent. CAPA echoes this. “We feel that the addiction risk has been overstated,” said Wilhelm. “CAPA believes people living with arthritis should have access to all treatments approved in Canada to be able to effectively manage their disease which includes opioids.”
I live with high levels of chronic pain myself and opioids are an essential part of keeping me going. It is deeply disappointing that the chronic pain community has been such a small consideration in the development of the strategy. It makes me worry about the future of my pain control.
(1) Toronto Central LHIN opioid strategy meeting presentation, May 16, 2017.
Homage to Louise Bergeron: Friend & Patient Advocate
By: Laurie Proulx
I write this from a place of sadness and not joy or pride unfortunately. A dear friend and patient advocate, Louise Bergeron, died suddenly in mid-August during an unfortunate and tragic car accident. She was 57 years old but even though her time was cut short, she and her family can t > ake pride in what she contributed during her 57 years on this earth.
Louise was diagnosed with Lupus in her late 30's and the challenges of managing the disease led to an interruption in her career in communications. To continue to make a contribution, she began volunteering (assuming her health remained under control) in various arthritis-related patient groups. Her volunteer work began as an active member of AWISH (Arthritis Self Help West Island) Montreal where she also carried out the role of Board member. She was also a former member of The Arthritis Society (TAS) Quebec division advisory board and advocacy committee.
I first met Louise in 2006 when she joined the CAPA Board of Directors. During her time with the CAPA Board, her positive attitude was readily apparent in everything she did. At Board conference calls and meetings, she was always eager to put up her hand to volunteer for projects and she created many new opportunities for patient involvement. She also acted as the CAPA liaison to the Consumer Advisory Council (CAC) of the Canadian Arthritis Network (CAN) until the end of funding of CAN. As a CAC member she presented at many occasions, both nationally and internationally. She contributed to many projects, such as models of care for arthritis and advocating for patient involvement in research. She became the CAPA President in 2009 / 2010 and led the organization with poise including the merger with the Consumer Advisory Council (CAC) of the Canadian Arthritis Network (CAN).
Her dedication continued for many years and she expanded her work to support various research networks in under-served groups including representing the perspective of people living with systemic autoimmune rheumatic diseases, which included involvement in the Canadian Network for Improved Outcomes in Systemic Lupus Erythematosus (CaNIOS) and Lupus Canada. She effectively collaborated with many clinicians and researchers from this community, such as Dr. Paul Fortin and Dr. Sasha Bernatsky, and co-authored many studies which were published in reputable medical journals. In her work with Dr. Paul Fortin, she co-developed 'MyLupusGuide', a web platform dedicated to informing persons with lupus and promoting their self-care. She was still an active contributor in her capacity as patient expert and adviser on ongoing research projects as she steered those projects towards better and more relevant clinical applications.
In April 2012, Louise secured full-time employment with the National Association of Federal Retirees, where she worked as an Advocacy and Policy Officer - Health. Though our paths crossed less during more recent years, she would continue to identify opportunities and provide support to other patient advocates, researchers and clinicians. On a personal level, she was the first person to provide support for a personal project of mine on pregnancy and parenting with arthritis. She made many connections for me which helped support the implementation of the project. This is just one example of how she mentored other patients to become advocates for themselves and the broader patient community. Her approach was always a non-judgmental one which allowed people to find a role for themselves as individuals and patient advisors. All of her efforts led to a formal award for Louise, the Queen’s Diamond Jubilee Medal for her outstanding volunteer work on behalf of the Arthritis community.
I know the impact of her work will be felt for many years both in terms of advancing the involvement of patients in research, policy setting and other aspects of the Canadian health care system. She will be missed by her friends at CAPA and by the broader arthritis community in Canada.