Advocacy for Lymphedema Insurance Coverage

Last Modified: October 29, 2006

Dear OncoLink "Ask The Experts,"

I've had lymphedema for 7 years, following removal of a tumor in the right axilla. I've had recurring cellulitis and was hospitalized last month. I've had manual lymphatic drainage (MLD) in the past, but according to my insurance company, I've exhausted therapy coverage for my arm. Also, I wear a compression sleeve and glove all day, and a Reid sleeve at night. Each October, when everyone focuses on breast cancer, I am always disappointed that very little attention is paid to lymphedema.

Linda McGrath Boyle PT, DPT CLT-LANA, Cancer Rehab Specialist and OncoLink Lymphedema Team Editor, responds:

In order for your voice to be heard concerning your struggle with lymphedema, you should definitely contact your state senator and discuss these issues. Only by all of us working together can we create change. Please contact the National Lymphedema Network and become involved. Many of us who treat people with lymphedema work hard to try and improve reimbursement, but we need your help. Each person that has lymphedema needs to be involved in helping to raise lymphedema awareness and change the current situation. As the number of cancer survivors increases, we need to provide excellent, affordable care to address problems that remain after the cancer has been conquered.

Some insurance companies are less generous than others in paying for complete decongestive therapy. You should call your insurance company directly and discuss your need for physical therapy, especially due to your recurrent cellulitic infections. Intervention by a certified lymphedema therapist may help to avoid future episodes of infection; having said that, it is not unusual for someone to have an episode of infection during their course of care. This may be due to moving the lymph fluid that contains bacteria away from the swollen limb. Your physician needs to write a letter of medical necessity for complete decongestive therapy to the insurance company. This may help to justify your receiving benefits.

Also, refer to the American Cancer Society website. On October 21, 1998, the Women's Health and Cancer Rights Act (WHCRA) was signed into law. This law helps to assure that breast cancer survivors receive the care they require and deserve.

It is also very important to have a physician who understands lymphedema and can treat the cellulitic infection. If you have recurrent infection, perhaps you need to have a different antibiotic and treatment in order to prevent future infection.