Lymphadema Fact Sheet

Bob Weiss, lymphactivist, has drafted a basic fact sheet for lymphadema. Here is his list:

LYMPHEDEMA FACT SHEET

• There are between two and eight million lymphedema sufferers in the U.S.
• Lymphedema is a swelling of a limb or part of the body that is caused by a functional inability of the lymphatic system to transport intercellular lymphatic fluid back to the circulatory system.
• Lymphedema can affect the arms, legs, breast, back, abdomen, groin, genitalia and/or internal organs.
• Congenital (primary) lymphedema is caused by a malformed lymphatic system and can be present at birth, develop at puberty, or onset in later years.
• Secondary lymphedema can be caused by trauma to the lymphatic system, disease/infection, or parasites.
• Secondary lymphedema is common as a result of cancer treatment (breast, prostate, reproductive, melanoma) or as a result of vein harvesting for coronary arterial by-pass operations.
• Treatment procedures have been developed in Europe over the last 30 years, but have only been accepted by American medicine the last 10 years.
• The current standard of treatment for lymphedema is called "complex or complete decongestive therapy" and has been the recommended protocol in Europe since 1995 (International Society of Lymphology) and in the U.S. since 1998 (American Cancer Society Lymphedema Workshop).
• Complex Decongestive Therapy (CDT) is a multi-modal treatment that comprises ALL of the following modalities:
1. Manual lymph drainage
2. Compression therapy (bandage systems, compression garments, manually-adjustable compression devices)
3. Lymph stimulating exercises while under compression
4. Meticulous skin care
• Today there are a number of schools that train medical practitioners in the protocols of CDT, and there is now a certification agency (LANA) that sets minimum training criteria.
• Pneumatic compression pumps may be beneficial as an adjunct to CDT but should never be used in its absence.
• Medicare has no national medical policy for the treatment of lymphedema and routinely denies coverage for the treatment components.
• Some states have lymphedema treatment policies and will cover manual lymph drainage, but only as rehabilitative physical therapy and not as medical treatment.
• Many patients have had Medicare denials for compression bandage systems and compression garments reversed by Medicare Administrative Law Judges, but only after many expensive appeals.
• Treatment of lymphedema has been shown to reduce and eliminate the incidence of infection (cellulitis and lymphangitis) encouraged by stagnant lymph.
• It can be demonstrated that proper treatment of lymphedema and compliance by patients with the daily protocols is not only good medicine, but it is good business (i.e., reducing or eliminating hospital stays by preventing recurrent infections).
• There is a need for basic research into the lymphatic system, its functioning, pathologies, genetics and treatment.
• There is a crying need to educate the medical community, medical insurance community and the public on the current medical standard of treatment of lymphedema.