Advocacy for health equity We all deserve to be treated fairly
By Anna KennedyAdvocacy is defined as any action that speaks in favour of, recommends, argues for a cause, supports or defends, or pleads on behalf of others.
Anarticle in Pathways (Fall 2022 issue) highlighted the discrepancies in lymphedema treatment reimbursement across Canada; specifically compression care that is not fully covered by most provincial healthcare plans. Further discrepancies also exist for intensive decongestive treatment, which is necessary to ensure the success of compression care. But is this fair? Why should the province you live in or the type of lymphedema you have (primary or secondary, cancer-related or not) dictate the extent of the coverage you are entitled to? These inequities cry out for a fundamental need for change in health policy.
Lymphedema funding
Public health care in Canada is federally mandated and funded through transfer payments to the provinces. However, the responsibility of delivering medically necessary services lies with each province. Since “medically necessary” is not defined in Canada’s Health Act, each provincial jurisdiction has their own interpretation of what they will publicly fund. This is the
reason for the disparity in reimbursement across provinces and hence tireless efforts are required for advocacy on a provinceby-province level in Canada. We encourage readers to use March Lymphedema Awareness Month to write to the their provincial health minister, deputy health minister and their local Member of Parliament to request better lymphedema treatment.
https://www.canadalymph.ca/WLD
Tips for submitting a letter of support
Rather than an email, a signed letter that is handwritten or typed can have the biggest impact. Send it the old-fashioned way by post so it ends up on someone’s desk and doesn’t get buried in his or her email inbox. Ensure your letter is brief, succinct and to the point; no more than 1 or 2 pages. Be sure to connect with your local provincial lymphedema association, to coordinate your requests and get their support.
A collective and coordinated effort is always more impactful.
If you are a person living with lymphedema
– Explain how lymphedema has affected you and your family personally. Describe the impact to your physical and mental health. How will your quality of life be improved if you receive better coverage? Including a photo can be powerful.
– What is your financial burden for getting proper treatment of care? Provide an annual figure of what it costs.
– Request that funding for lymphedema diagnosis and care is increased in your province to make treatment more accessible for all Canadians.
– Include printouts of supporting documentation (like the Reimbursement Schedule in Pathways Fall 2022, the Prevalence of Lymphedema in Pathways Spring 2020 and the CLF Compression Statement).
If you are a health professional treating lymphedema patients
– Write about a patient you may have who can’t afford treatment and the negative impact that has on managing their lymphedema.
– Explain what Complete Decongestive
Therapy is and how important it is for the proper management of lymphedema.
– Explain that proper care of lymphedema patients can reduce the load on other areas of the health system; for example, a reduction in visits to family physicians and acute hospital services for treatment of cellulitis, etc.
– Request that equitable access to care be provided to all those living in Canada with lymphatic disorders.
– Include printouts of supporting documentation.
Framing the issue
In collaboration with your provincial association, be specific in what you are asking for. Is it reimbursement of compression garments, an increase in the percentage or frequency of reimbursement, better access to decongestive treatment or diagnosis or simplifying the process to access reimbursement?
Connecting with local advocacy groups
Your local lymphedema association is already working hard and will have local representative contacts and inspirational
material for you to use. We encourage you to find their contact information on the CLF website so you can correspond with them directly and find out how you can help each other. It could be adding a personal story to their ongoing advocacy efforts, sharing your/their request on your social media or offering specific skills like social media, writing, communication, etc. that can strengthen their advocacy campaigns.
Writing personal letters is only one strategy for getting messages across to those who can make policy changes. Lobbying in front of decision-makers and raising awareness through traditional media and social media are just a few other options. Remember to
Acknowledgments
connect with your lymphedema association or advocacy group in your province or state, and at the national level. Collective efforts are needed to show solidarity and a singular voice in advocating for change. LP
We thank the following people who contributed ideas and suggestions for this article. We encourage you to click on their websites to read more about their successful advocacy efforts.
Lymphedema Association albertalymphedema.comHeather Ferguson, President Lymphedema