In the trenches A provincial advocacy story
“After attending two CLF conferences and meeting other Provincial Association presidents, I was finally ready to launch an advocacy initiative in British Columbia. Thanks to Anne-Marie Joncas (Quebec) for providing lots of ideas and Diane Martin for sharing the Alberta advocacy experience in achieving two government-funded lymphedema clinics.” - Christine Chandler
2019
The British Columbia Lymphedema Association (BCLA) developed a patient survey to engage the province wide community. We had a 30% response rate to the 600 surveys distributed through BCLA members, contacts, patients of lymphedema therapists and doctors. With the help of two pre-med student volunteers, data was condensed into a series of Infographics depicting: demographics, health region, length of time before diagnosis, costs involved and effect on quality of life.
2020
We established a patient committee to determine priorities, using an advocacy primer to structure our discussions. The main priority was determined to be funding of compression garments for all lymphedema cancer patients, not just those who had undergone surgery for mastectomy or lumpectomy.
2021
required in an application for financial coverage for assistive devices.
By this time our advocacy committee included an experienced therapist, an industry representative, two BCLA representatives, and two new patients who had the skill sets for researching, organizing and editing the application.
Government Executive Committee. The initial request is for approval of funding for compression garments for all primary and all post cancer patients. Eligibility will be based on a financial means test.
Since 2021
The advocacy committee has continued work on identifying the most effective ways to achieve early diagnosis. This included conducting a survey of BC Wound Care Clinics where many undiagnosed lymphedema patients are identified.
We secured a meeting with the B.C. Ministry of Health, where we shared a patient story plus the survey infographics and outlined the need for financial coverage of compression garments for all lymphedema patients. This led to an introduction to the appropriate B.C. Pharmacare Department Manager, who provided specific details
We began writing at the end of March and in June 2021 we hand delivered the 75-page fully referenced application to the Ministry office. Since submitting the application, we have experienced several delays due to COVID, transition to new Pharmacare contacts, government research processes and finally, in late 2024, a provincial election. However, our application has now reached the final stage with the Pharmacare review team preparing a report to present to the
Christine Chandler lived with lymphedema for 20 years without any support or guidance. Finding out about the BCLA changed everything for her. She served as secretary and then President from 2017-2023 and now chairs their Advocacy Committee.
2024 – 2025
Our focus has been on writing proposals for Post Cancer Care for those at risk of developing lymphedema. Several physiotherapists within the BC cancer network have taken Vodder training and are in the early stages of implementing some aspects of our proposal. A second proposal is for establishing regional lymphedema clinics which would offer early diagnosis, initial treatment and education on self-management. Throughout the process
BCLA has focused on building public awareness: through March 6th events, reaching out to MLA’s, offering education days and regional workshops, member articles in local papers plus two submissions to the B.C. Budget Advisory committee. We have maintained communications with “key stakeholders” including health care practitioners in all the B.C. health authorities, lymphedema experts, government and political contacts in the BC Legislature. LP