Insurance and Lymphedema Treatment
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 article 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.
Your Treatment Team
Physicians and Nurse Practitioners
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 be responsible for your office visit co-pay or co-insurance for visits with your healthcare provider.
Physical and Occupational Therapists
A physical or occupational therapist (PT/OT) who specializes in lymphedema will provide treatment for your lymphedema. Initial treatment consists of Complete Decongestive Therapy. Check with your insurance company about your benefits for PT/OT services. Most, but not all, plans cover PT/OT. Typically, a 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. You may 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.
Equipment Needed for Treatment
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.
Discussing Your Needs with Your Insurance Company
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, ask your healthcare provider with assistance filing an appeal for coverage of this DME.
Congress Addressing Lymphedema Coverage Issues
There is a movement to change the way insurance companies pay for lymphedema treatment. 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.
What if Insurance Will Not Pay?
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:
If you have been treated for Cancer:
Living Beyond Breast Cancer
The National Lymphedema Network (NLN)
Marilyn Westbrook Garment Fund
- Patient must be a member of the National Lymphedema Network.
- Individual membership costs $50.00
- Patient must be receiving treatment at an NLN affiliated clinic or with an NLN affiliated therapist.
The American Cancer Society (ACS)
Provides referrals to local resources for financial support.
Many churches and synagogues have funds for members in need. Your family might be thrilled to know that there is something you truly need that they could help you as a gift for a special occasion/ holiday. You can also consider fundraising options through Crowdfunding.
Keep Communication Lines Open
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. If you have insurance coverage through your employer, let your human resources department know about the trouble you are having getting lymphedema supplies covered. Your employer can take this back to the insurance company when they are negotiating their plan. Visit the NLN website for help in appealing insurance denials or updates on legislative efforts.