Insurance and Lymphedema Treatment

Treatment for lymphedema requires 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 provides 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 begins 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 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 every PT/OT visit. If you have a plan that requires referral to a specific location, check to see if the therapists at that facility have the training to treat lymphedema. If not, talk to your doctor and insurance company about going to a different facility. Lymphedema may be considered an "out-of-capitation" or "out-of-network" service. Medicare covers PT/OT visits for medically necessary services. Remember that if you only have Medicare A and B, you will be responsible for 20% of the cost of your treatment. If you have a Medicare supplement, that 20% should be covered.

Equipment Needed for Treatment

Treatment for lymphedema includes the use of compression. There are three types of compression. (Learn more about garments and compression). Medicare covers compression garments (standard or custom-fitted) under Part B with 20% copay.  

• 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 may need  to wear compression at night. You cannot wear your daytime compression garments at night as they will have a tourniquet effect. Your therapist will help you determine the compression that is right for you. 

Talking to Your Insurance Company

Your insurance company may consider bandages and compression garments a type of "durable medical equipment" or "DME". For each of the types of compression listed above, get a letter of medical necessity from your healthcare provider. Use this letter to ask 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.

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:

CancerCare

1-800-813-HOPE

www.cancercare.org

Living Beyond Breast Cancer

610-645-4567

www.lbbc.org

The National Lymphedema Network (NLN)

Marilyn Westbrook Garment Fund

• The 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.
• https://lymphnet.org/garment-program

The American Cancer Society (ACS)

Provides referrals to local resources for financial support.

800-ACS-2345

www.cancer.org

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 with as a gift for a special occasion/ holiday. You can also consider fundraising options through crowdfunding.

Keep Lines of Communication 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.