The Canadian Cancer Survivor Network (CCSN) returned to Queen’s Park for its fourth All-party cancer caucus meeting on May 30, 2019. In this session, CCSN invited the Lymphedema Association of Ontario (LAO) to continue discussions on cancer rehabilitation and share with MPPs one of the important and often unacknowledged side effects of cancer treatments: lymphedema.
Jackie Manthorne, President & CEO of the Canadian Cancer Survivor Network, delivering remarks as Chair of the Caucus.
Manthorne opened the session by emphasizing that, “the effects of cancer don’t end when treatment does. Cancer survivors may face numerous challenges after treatment that may stop them from going back to work or living a good quality of life.” With better screening and new treatments improving mortality rates and prolonging the lives of cancer patients, attention to life after cancer is an increasing yet mostly unmet need in Ontario.
Three of CCSN’s Caucus previous meetings have provided MPPs with information on cancer rehabilitation, including the many side effects of cancer and its treatment, where and what kind of rehabilitative services are available in Ontario, and evidence-based models of rehabilitative care in cancer centres. Other topics raised at Caucus meetings included PSA screening for prostate cancer and the cost of take-home cancer drugs in Ontario.
What is cancer-related lymphedema?
Lymphedema is a progressive, chronic and incurable condition. It is a common side effect of cancer treatment due to disruption to the lymphatic system. However, it is important to note that lymphedema can result from a number of other illnesses.
Debbie Ciotti-Bowman, BScN ,who is a member of the Board of Directors of the Lymphedema Association of Ontario, told MPPs that over one million Canadians are affected by lymphedema, and that the real number of cases is likely higher because of the lack of research and awareness of the condition.
Rob Caparelli, Treasurer of the Board of Directors of the LAO, shared his father’s experiences by video. His dad lost his life due to severe lymphedema that occurred as a result of years of chemotherapy, radiation and the removal of lymph nodes during surgery. Rob, along with the rest of his family, had no idea how difficult it would be to find treatments for lymphedema.
“During the last few months of my father’s life, his lymphedema was so bad that he could no longer bend his knees or sit at the dinner table to eat, and he could only stand for a few minutes at a time. Lymphedema slowly but relentlessly eroded my father’s quality of life and wreaked havoc on his physical and emotional well-being.”
A room filled with MPPs and cancer community representatives engaging in discussions.
Bowman underscored that there are three primary gaps which negatively impact people with lymphedema:
- Insufficient education of healthcare professional about lymphedema, leading to delayed diagnosis and treatment.
- An inability to access treatment for lymphedema treatment due to financial and geographic limitations, and the lack of patient awareness about what resources do exist.
- A lack of investment into research for long-term treatments and medications for lymphedema that would mitigate the costs and the need for lifelong manual physical therapy of this chronic disease.
There is no medication available to control lymphedema. The only treatment is regular specialized therapy, which reduces the swelling. However, many patients are unable to access care because of the cost and/or the lack of therapists trained to treat lymphedema in their community or region. Because of these two factors, the lifelong impact of chronic lymphedema is sometimes described as being more difficult to deal with than the cancer itself.
Jodi Steele, who is a registered physiotherapist and member of the Board of Governors as well as a Professor at Niagara College, provided MPPs information on the cost of lymphedema and its complications on patients and the healthcare system.
Steele also demonstrated to MPPs how patients wrap their fingers, hands and arms, which is a common self-administered treatment patients must do to reduce swelling.
Parliamentary Assistant to the Minister of Health and Long-Term Care, MPP Robin Martin wrapping her hand with a compression bandage.
Each MPP was supplied with compression bandages, and they then attempted to wrap their fingers, hands and arms. Some MPPs gave up, while others needed Steele’s assistance.
Jodi Steele, Registered Physiotherapist, Board of Governors, and Professor of Health and Fitness in Niagara College, demonstrating to Liberal Party Leader John Fraser and Green Party Leader Mike Schreiner how to use a compression bandage.
Ciotti-Bowman and Steele told MPPs that the treatment of lymphedema should be provided free of charge in Ontario, with funding from the provincial government. This would enable patients to have a better quality of life and to go back to work much faster.
A robust discussion followed, with MPPs asking many questions, including:
- Why is a prescribed garment to recover from lymphatic reconstructive surgery not covered through provincial reimbursement?
- Which provinces have cancer rehabilitation programs in their regional cancer centres that address cancer-related lymphedema?
- How can patients access certified lymphedema therapists?
After the Caucus meeting, Ciotti-Bowman provided feedback: “MPPs seemed to understand that lack of treatment is a serious issue for Ontarians with lymphedema. The feedback we received was that we had ‘laid things out well’ so that MPPs could understand the situation.”
The Lymphedema Association of Ontario will continue meeting with MPPs to further analyze the scope of cancer-related lymphedema in the province and best-practices in other jurisdictions.
CCSN and cancer community representatives will return to Queen’s Park in late 2019 for its fifth All-party Cancer Caucus.
MPP Members of the All-party Cancer Caucus:
- Ontario PC Party: Robin Martin, Effie Triantafilapoulos, Doug Downey, Andrea Khanjin, Natalia Kusendova, Christina Mitas, Deepak Anand, Belinda Karahalios, Daisy Wai, Stephen Crawford.
- Ontario New Democratic Party: France Gélinas, Sara Singh, Laura Mae Lindo, Jill Andrew, Peggy Sattler, Joel Harden.
- Ontario Liberal Party: John Fraser.
- Green Party of Ontario: Mike Schreiner.
CCSN and Ontario cancer community representatives:
- Jackie Manthorne, President & CEO, CCSN.
- Mona Forrest, Secretary, CCSN Board of Directors.
- Jaymee Maaghop, CCSN Manager of Public Policy.
- Kimberly Sliva, Office Administrator, CCSN.
- Debbie Ciotti-Bowman, BScN, Board of Directors and Advocacy Committee, Ontario Lymphedema Association.
- Jodi Steele, BKin., Registered Physiotherapist, Board of Governors and Professor of Health and Fitness, Niagara College.
If you’d like to learn more about lymphedema, resources and support can be found in the LAO’s website: https://www.lymphontario.ca/.
From L to R: Jackie Manthorne; PC MPP for Mississauga Centre, Natalia Kusendova; Debbie Ciotti-Bowman; PC MPP for Richmond Hill, Daisy Wai
From L to R: Jodi Steele; Jackie Manthorne; Green MPP for Guelph, Mike Schreiner; Debbie Ciotti-Bowman