Lymphedema Awareness Month

  • 10 March 2014

LE awareness

Because March is Lymphedema Awareness Month, as a patient-advocate I cherish the opportunity to educate readers on lymphedema and its relation to an important bill pending in Congress. Everybody around the world recognizes the pink ribbon for breast cancer awareness, but how many know what the turquoise ribbon represents?

Lymphedema is a chronic condition caused by the accumulation of lymph fluid that causes tissue swelling, most commonly in the arms and legs. It is estimated to afflict about 3 to 6 million Americans.

Lymphedema is often called “cancer treatment’s dirty little secret.” While individuals can be born with a primary form of lymphedema, the majority of cases are secondary in nature, most often caused by cancer treatments that damage the body’s lymph system or immune functions. For cancer patients, lymphedema is one of the most significant survivorship issues. Breast cancer, in particular, is one of the most common causes of lymphedema, with an estimated incidence rate of about 20%.

Fortunately, there is hope for lymphedema patients in that the risks and complications of this disease can be mitigated by Complete Decongestive Therapy (CDT), the gold standard for treating lymphedema. In addition to manual lymph drainage and decongestive exercises, an essential component of CDT is compression therapy. Unfortunately, Medicare beneficiaries currently lack coverage of the compression supplies needed for CDT to be completely effective. Lymphedema is progressive if left untreated and can put patients at greater risk for serious infection and disability.

As a breast cancer patient I deal with the daily challenges of managing lymphedema in my arm. In my case the swelling was caused by removal of lymph nodes to stage my cancer and by radiation under the arm as part of my treatment. Lymphedema therapists treated my lymphedema by CDT in 1997, and since that time my insurance companies have paid partially for my compression garments and bandages. But when I become a Medicare beneficiary, I will lose that coverage.

To help patients like me successfully treat lymphedema and manage their symptoms, it is important that Congress pass H.R. 3877, the Lymphedema Treatment Act. This legislation will provide Medicare coverage of doctor-prescribed compression supplies while also helping to reduce total Medicare spending, decreasing the incidence of costly complications and disabilities associated with the disease. Many Medicare patients cannot afford compression garments, and the resultant swelling brings on an unnecessary loss of functions in the activities of daily living.

And many insurance companies follow the example of Medicare: if Medicare does not provide coverage, they also deny it. Congressional approval of this Act will make such companies reconsider their present policy of not paying for compression garments and bandages.

To learn more about the Lymphedema Treatment Act and how you can get involved, please visit Passage of this Act would be the compassionate and right thing for Congress to do.

P.S. Thomas Hovatter is the late husband of a friend who serves with me and others on the Board of the Lymphedema Advocacy Group, a grassroots non-profit organization directed solely to passage of H.R. 3877. Thomas died due to complications of lymphedema. His wife has made lobbying for this bill her greatest passion.

Do you or does a friend of yours have lymphedema? If so, does the medical insurance company provide any coverage for compression supplies?