THE COST BURDEN OF LYMPHEDEMA
Updated: Feb 21, 2022
Spending Wisely & Help With Costs
The gold standard of treatment for lymphedema includes compression, skin care, exercise and manual lymphatic drainage. Problems exist in obtaining this treatment for many reasons.
AVAILABILITY OF TRAINED THERAPISTS
There are fewer trained lymphedema therapists than needed to meet the needs of people with lymphedema in Ontario and the majority are in major centers. This leaves those in rural areas without an option for in person care unless they travel. Lymphedema therapists are the key to knowledge for people with lymphedema, providing specific instructions on self-care and exercise suited to that particular individual, navigating the healthcare system for their clients, they provide information about local garment fitters, funding opportunities for the garments and can communicate with doctors in the best and highest health interest for their clients.
COVERAGE FOR TREATMENT COSTS
OHIP: Does not cover the cost of treatment for lymphedema
BENEFIT PROGRAMS: The vast majority of lymphedema therapists are Registered Massage Therapists so treatment with lymphatic drainage massage is covered under third party benefit packages. Some physiotherapists are also lymphedema therapists and benefits do cover physiotherapy as well. For those without benefits however, the cost of treatment can be a burden and a deterrent of care. Many benefit packages will cover compression garments with a prescription from a doctor. Differences range from a percentage of the cost to covering a certain number of garments per year. Those without benefits, it may mean going without compression. Additionally, the reduction phase of treatment meant to reduce the limb to its smallest size possible before getting into a maintenance compression garment includes the use of bandages or velcro garments. Most benefits providers do not cover the cost of bandaging supplies and therefore, many people choose to go straight into a compression garment.
ASSISTIVE DEVICES PROGRAM (ADP): Fortunately, the Ministry of Health and Long Term Care does have a program for compression garment funding in Ontario. It will cover 75% of the cost of compression garments for lymphedema allowing you 6 garments per year. The admission process requires a specialist diagnosis of lymphedema and signature. You must have to wear the garment on a daily basis to be eligible and have had your swelling for 6 months or more. Unfortunately, for those not under the present care of a specialist, it can take upwards of a year to be seen, diagnosed and the admission process started. This leaves the individual with a choice. Either paying for their first couple of garments by themselves or waiting until they see the specialist. The latter choice can lead to a worsening of their lymphedema.
SPENDING WISELY AND GETTING HELP WITH COSTS
Many people are told they need compression and are left to their own devices to search for what they need. Some will take to the internet and others to their local store or pharmacy. There are many things to take into consideration when buying a compression garment. After all, if you have lymphedema, you should consider compression to be medicine for your lymphedema. Take a look at my blog post that describes the four rights of compression at https://www.lymphkr.com/post/be-your-own-health-advocate-for-lymphedema-a-five-part-series
I cannot tell you how many stories I have heard from clients about the multiple garments they had purchased and the problems they encountered with each one. Ill fitting garments can cause skin damage, can create a tourniquet effect and potentially worsen your swelling. Spending wisely means contacting a lymphedema certified fitter or a lymphedema therapist who can direct you to a fitter. Going this route saves you money in the long run, prevents worsening of your lymphedema and also prevents complications from buying the wrong garment.
SUGGESTIONS FOR HELP WITH THE COST OF TREATMENT AND GARMENTS
Friends or benefactors
Ask your church if they might be able to help
Service clubs like the Lions Club
Lymphedema Association of Ontario’s compassion fund (https://www.lymphontario.ca/Compassion-Fund-Application)
Kiwanis club https://www.kiwanis.org/
March of dimes https://www.marchofdimes.ca/en-ca#content
You can also talk with your local MP to discuss the need for lymphedema treatment coverage in our healthcare system. Check the Lymphedema Association of Ontario’s website as they have petitions you can sign from time to time.