Treatment for lymphedema will require ongoing care from a physician and a physical or occupational therapist (PT/OT). You will need to purchase supplies to control your swelling. This page should provide you with information to use when speaking to your insurance company. Every insurance carrier and plan is different – you should find out the specifics of your plan before beginning treatment. Lymphedema is a chronic disease. If left untreated or under-treated, it can lead to infection, disability, disfigurement or death.
Care of your lymphedema should begin with a physician or nurse practitioner visit. Typically a physiatrist (physical medicine and rehabilitation doctor), primary care physician or oncologist will diagnose your lymphedema. You should form a relationship with a health professional who understands lymphedema and can follow your care long term. Check with your insurance to make sure they cover physician visits. You will likely need to pay your co-pay or co-insurance for doctor visits.
A physical or occupational therapist (PT/OT) who specializes in lymphedema will provide treatment for your lymphedema. Initial treatment consists of Complete Decongestive Therapy [add link to CDT page]. Check with your insurance company about your benefits for PT/OT services. Most, but not all, plans cover PT/OT. Typically the specialist co-pay will apply to PT/OT visits. If you have a plan that requires referral to a specific location, check to see if the therapists at that facility have training to treat lymphedema. If not, talk to your doctor and insurance company about going to a different facility. Lymphedema is often considered a "out-of-capitation" service and you will be allowed to attend any facility with the assistance of your PCP to obtain an 'out-of-network referral' from your insurance company. Medicare covers OT/PT visits, but there is a monetary cap to outpatient services.
Treatment for lymphedema includes use of compression. There are three types of compression. (Learn more about garments and compression). Medicare does not currently pay for any type of compression listed below.
Bandages: Initial and ongoing treatment involves the use of short-stretch bandages. Your therapist will give you specific information on how many bandages, which sizes and where you can order them. Insurance coverage for these bandages varies.
Compression garments: These garments are worn during the day to control swelling after it is reduced by treatment. Your therapist will help you determine when you are ready for compression garments and what size you will need. Some people can purchase an "off-the shelf" garment in a pre-set size, some need to have custom garments made. You should purchase two garments – so that one can be laundered. Garments need to be replaced every six months. Insurance coverage for garments varies.
Night-time bandage alternatives: You will need to wear compression at night. You cannot wear your daytime compression garments at night as they will have a tourniquet effect. You can either bandage (using the short-stretch bandages listed above) or purchase a night-time bandage alternative. Your therapist will help you determine the compression that is right for you. Insurance coverage for bandage alternatives varies.
Your insurance company considers bandages and compression garments a type of "durable medical equipment" or "DME". Speak to the DME department when discussing your case. For each of the types of compression listed above, you can obtain a letter of medical necessity from your healthcare provider. Use this letter to petition your insurance company to pay for your compression. If payment is denied, you can send an appeal letter like the sample offered by the National Lymphedema Network.
There is a movement to change the way insurance companies pay for lymphedema treatment. The Lymphedema Treatment Act is a bill sponsored by Congressman Larry Kissell of North Carolina. The bill mandates coverage for Medicare beneficiaries with lymphedema from any cause. Most other insurance companies would follow along with these Medicare guidelines. Check the website for specific information about this bill.
If your insurance company will not pay for your compression bandages or garments, here is a list of some possible sources to obtain funds for the supplies your therapist has explained that you will need:
Given the attention being paid to the out of pocket costs facing people with lymphedema, advocacy groups hope to see changes in the future. Contact your insurance carrier periodically to see if coverage has changed. Visit the NLN website for help in appealing insurance denials or updates on legislative efforts.