lymphnet.org / Lymphedema FAQs / Question Corner / July-September 2002

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LymphLink Question Corner

July-September 2002
Marcia Beck, APRN, BC, CLT-LANA, NLN Medical Advisory Committee Member

Q:  I've been denied coverage for my garments by my HMO insurance provider, but I've heard that I can appeal this decision. Do you have any specific guidelines for doing this?

A:  You are certainly not alone in your struggle. The problem with garments and bandages is that most insurance providers consider them "Durable Medical Equipment," the same category as wheelchairs and walkers. We need to educate our medical communities and legislators about Complete Decongestive Therapy and its four essential components:

1. Manual Lymphatic Drainage
2. Compression Therapy (which should include bandages and garments)
3. Meticulous Skin Care (to prevent the real risk of infection, cellulitis)
4. Exercises

Certainly DO appeal this decision through your provider! Here are my suggestions:

• Ask to speak to the Medical Director about the issue; Find out if the Medical Director's expertise is in Lymphedema.
• Get to know your state and US representatives and senators. Share your information and opinions. Your vote counts!
• Some garments have a "Letter of Medical Necessity" packet that can be filled out by your physician to provide more information, indicating the need for long-term therapy and the need for replacement.

Bob Weiss and his wife were successful in gaining coverage for bandages in California as have been a number of other patients and advocates (see the "Letters to the Editor" section in this issue). We need many more to appeal and follow the chain of legislative command to convince our politicians. We would like to form a subcommittee to address the growing legislative concerns. If you are interested in this grassroots effort, please contact the NLN office!

Q:  I have lymphedema, but I live in an extremely rural area and my healthcare providers don't seem to have any guidance for me. How can I connect with other people in a similar situation?

A:  Your lymphedema therapist may have the name of a support group or you might just be the person to help initiate a Support Group in your area! In addition, the NLN can put you in contact with Penpals (or Netpals) from around the country who are facing similar concerns/issues. The internet has a good bit of information on lymphedema, as well. If you do not have access to the internet at home, most public libraries have computers with internet access and staff who are willing to assist you in getting started.

Q:  I have lymphedema and I'm getting so tired of hearing, "it's not swollen too bad" or "you can live with a little swelling." Is there anything I can do to change the widespread ignorance about lymphedema among most healthcare providers? Do you have a "fact sheet" about lymphedema or something along those lines that I could give to my healthcare professional?

A:  Bob Weiss, lymphactivist, has drafted a basic fact sheet for lymphedema that he has agreed to share with all of our readers. 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.

My Thanks to Bob Weiss for his untiring support of lymphedema patients and for sharing this information.

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Please address questions to: Editor c/o NLN, 116 New Montgomery Street, Suite 235, San Francisco, CA 94105 or e-mail: nln@lymphnet.org. Deadlines for submissions (for the following issue) are: Feb 15, May 15, Aug 15, Nov 15.

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