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Insurance Coverage for the Treatment of Lymphedema

Fact Sheet

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What is Lymphedema? 

Lymphedema is a swelling of a limb and/or part of the body because of a functional inability of the lymphatic system to transport intercellular lymphatic fluid back to the circulatory system.  Lymphatic fluid becomes stagnant, leaving the patient prone to infection.  When infection occurs, many patients require treatment with antibiotics and costly hospitalization.  Lymphedema can affect arms, legs, breast, back, abdomen, groin and genitalia.
Congenital (primary) lymphedema is caused by a malformed or underdeveloped lymphatic system, and can be present at birth, develop at puberty, or occur at older ages.
Secondary lymphedema can be caused by trauma or surgical resection, radiation, infection or disease involving the lymphatic system.  The greatest incidence of secondary lymphedema in the United States occurs in cancer patients (breast, melanoma, sarcoma, gynecological, prostate).
30 % of all breast cancer axillary node dissection and inguinal node dissection patients will develop lymphedema over their lifetime.
In the entire United States, of the 203,500 newly diagnosed cases of breast cancer projected for YR2002, 61,000 will develop lymphedema! Also requiring treatment are the survivors of uterine and cervical  cancer, prostate cancer and melanoma treatment, adding an estimated 88,500 new lymphedema patients requiring treatment in 2002. (American Cancer Society Facts and Figures 2002.)
The above estimated 149,000 new cases of lymphedema will be added to the millions of existing diagnosed and undiagnosed cases of primary and secondary lymphedema.


How is it treated?

Treatment procedures have been developed in Europe over the last 30 years, but have only been accepted by American medicine for the last 10 years.   The current standard of treatment for lymphedema is called "complex or complete decongestive therapy," and it 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).  The American Physical Therapy Association (APTA), Guide to Physical Therapy Practice, recommends typically 5 -24 sessions be performed for acute management and periodic follow up as indicated.  The acute treatment program consists of manual lymph drainage, low-stretch bandaging, exercise, skin care, and instruction in self-management, including the fitting and procurement of  compression garments, bandages and devices.  Phase 2 of the treatment program, the home treatment phase, continues for the life of the patient, and consists of self-manual lymph drainage, day-time compression garments, night-time bandaging with multi-layer low-stretch bandages or manually-adjustable compression devices, skin care and exercise while under compression.

Why is insurance coverage needed

Medicare has no national medical policy for the treatment of lymphedema and routinely denies coverage for components of the currently accepted 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.  Only twenty three states require all private health insurers to provide lymphedema coverage for breast cancer survivors.

Many medical providers fail to provide medical treatment to the current recommended standard of care partly because of lack of knowledge of the current medical standard of treatment for lymphedema, and partly because they do not understand the favorable economics of lymphedema treatment.
There is currently no law mandating treatment of lymphedema from causes other than breast cancer.
Currently in many private insurance companies limit the number of treatment visits and/or do not cover compression garments, bandages, and devices.  Insurers should at the minimum provide the minimal standard of care as outlined by the APTA-Physical Therapy Practice and provide replacements of compression orthotics to encourage patient compliance with their lymphedema treatment plan.


What is the cost of mandating lymphedema treatment? 

Treatment of lymphedema can shown to save significant amounts of money for the medical provider, the State and the patient. For example, savings in medical expenses over a forty year survival lifetime for treating a woman diagnosed with breast cancer at age 40 has been estimated at close to $400,000.
Treatment of lymphedema has been shown to reduce and/or eliminate the incidence of infection (cellulitis and lymphangitis) encouraged by stagnant lymph. 
By reducing the number of hospital admissions and doctor visits, providers will see reduced cost.  It can be demonstrated that proper treatment of lymphedema and compliance by patients with daily protocols is not only good medicine, but it is good business and a cost saving tool for insurance companies!
Proper treatment and management of lymphedema can enable patients living with lymphedema to continue to live productive lives.


For More Information Contact :

American Cancer Society                     www.cancer.org  (Keyword Search: Lymphedema)
National Lymphedema Network         
www.lymphenet.org
Robert Weiss           LymphActivist@aol.com

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Join us as we work for lymphedema patients everywhere:

Advocates for Lymphedema

Dedicated to be an advocacy group for lymphedema patients. Working towards education, legal reform, changing insurance practices, promoting research, reaching for a cure.

http://health.groups.yahoo.com/group/AdvocatesforLymphedema/

Subscribe: AdvocatesforLymphedema-subscribe@yahoogroups.com

Pat O'Connor

Lymphedema People / Advocates for Lymphedema

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For information about Lymphedema

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema\

For Information about Lymphedema Complications

http://www.lymphedemapeople.com/wiki/doku.php?id=complications_of_lymphedema

For Lymphedema Personal Stories

http://www.lymphedemapeople.com/phpBB3/viewforum.php?f=3

For information about How to Treat a Lymphedema Wound

http://www.lymphedemapeople.com/wiki/doku.php?id=how_to_treat_a_lymphedema_wound

For information about Lymphedema Treatment 

http://www.lymphedemapeople.com/wiki/doku.php?id=treatment

For information about Exercises for Lymphedema 

http://www.lymphedemapeople.com/wiki/doku.php?id=exercises_for_lymphedema

For information on Infections Associated with Lymphedema

http://www.lymphedemapeople.com/wiki/doku.php?id=infections_associated_with_lymphedema

For information on Lymphedema in Children

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_in_children

Lymphedema Glossary

http://www.lymphedemapeople.com/wiki/doku.php?id=glossary:listing

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Lymphedema People - Support Groups

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Children with Lymphedema

The time has come for families, parents, caregivers to have a support group of their own. Support group for parents, families and caregivers of chilren with lymphedema. Sharing information on coping, diagnosis, treatment and prognosis. Sponsored by Lymphedema People.

http://health.groups.yahoo.com/group/childrenwithlymphedema/

Subscribe: childrenwithlymphedema-subscribe@yahoogroups.com

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Lipedema Lipodema Lipoedema

No matter how you spell it, this is another very little understood and totally frustrating conditions out there. This will be a support group for those suffering with lipedema/lipodema. A place for information, sharing experiences, exploring treatment options and coping.

Come join, be a part of the family!

http://health.groups.yahoo.com/group/lipedema_lipodema_lipoedema/?yguid=209645515

Subscribe: lipedema_lipodema_lipoedema-subscribe@yahoogroups.com

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MEN WITH LYMPHEDEMA

If you are a man with lymphedema; a man with a loved one with lymphedema who you are trying to help and understand come join us and discover what it is to be the master instead of the sufferer of lymphedema.

http://health.groups.yahoo.com/group/menwithlymphedema/

Subscribe: menwithlymphedema-subscribe@yahoogroups.com

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All About Lymphangiectasia

Support group for parents, patients, children who suffer from all forms of lymphangiectasia. This condition is caused by dilation of the lymphatics. It can affect the intestinal tract, lungs and other critical body areas.

http://health.groups.yahoo.com/group/allaboutlymphangiectasia/

Subscribe: allaboutlymphangiectasia-subscribe@yahoogroups.com

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Lymphatic Disorders Support Group @ Yahoo Groups

While we have a number of support groups for lymphedema... there is nothing out there for other lymphatic disorders. Because we have one of the most comprehensive information sites on all lymphatic disorders, I thought perhaps, it is time that one be offered.

DISCRIPTION

Information and support for rare and unusual disorders affecting the lymph system. Includes lymphangiomas, lymphatic malformations, telangiectasia, hennekam's syndrome, distichiasis, Figueroa
syndrome, ptosis syndrome, plus many more. Extensive database of information available through sister site Lymphedema People.

http://health.groups.yahoo.com/group/lymphaticdisorders/

Subscribe: lymphaticdisorders-subscribe@yahoogroups.com

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All About Lymphedema

For our Google fans, we have just created this online support group in Google Groups:

Homepage: http://groups-beta.google.com/group/All-About-Lymphedema

Group email: All-About-Lymphedema@googlegroups.com

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Lymphedema Friends

http://groups.aol.com/lymphedemafriend

If you an AOL fan and looking for a support group in AOL Groups, come and join us there.

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Lymphedema People New Wiki Pages

Have you seen our new “Wiki” pages yet?  Listed below are just a sample of the more than 140 pages now listed in our Wiki section. We are also working on hundred more.  Come and take a stroll! 

Lymphedema Glossary 

http://www.lymphedemapeople.com/wiki/doku.php?id=glossary:listing 

Lymphedema 

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema 

Arm Lymphedema  

http://www.lymphedemapeople.com/wiki/doku.php?id=arm_lymphedema 

Leg Lymphedema 

http://www.lymphedemapeople.com/wiki/doku.php?id=leg_lymphedema 

Acute Lymphedema 

http://www.lymphedemapeople.com/wiki/doku.php?id=acute_lymphedema 

The Lymphedema Diet 

http://www.lymphedemapeople.com/wiki/doku.php?id=the_lymphedema_diet 

Exercises for Lymphedema  

http://www.lymphedemapeople.com/wiki/doku.php?id=exercises_for_lymphedema 

Diuretics are not for Lymphedema 

http://www.lymphedemapeople.com/wiki/doku.php?id=diuretics_are_not_for_lymphedema 

Lymphedema People Online Support Groups 

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_people_online_support_groups 

Lipedema 

http://www.lymphedemapeople.com/wiki/doku.php?id=lipedema 

Treatment 

http://www.lymphedemapeople.com/wiki/doku.php?id=treatment 

Lymphedema and Pain Management 

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_and_pain_management 

Manual Lymphatic Drainage (MLD) and Complex Decongestive Therapy (CDT)

http://www.lymphedemapeople.com/wiki/doku.php?id=manual_lymphatic_drainage_mld_complex_decongestive_therapy_cdt 

Infections Associated with Lymphedema 

http://www.lymphedemapeople.com/wiki/doku.php?id=infections_associated_with_lymphedema 

How to Treat a Lymphedema Wound 

http://www.lymphedemapeople.com/wiki/doku.php?id=how_to_treat_a_lymphedema_wound 

Fungal Infections Associated with Lymphe dema 

http://www.lymphedemapeople.com/wiki/doku.php?id=fungal_infections_associated_with_lymphedema 

Lymphedema in Children 

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_in_children 

Lymphoscintigraphy 

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphoscintigraphy 

Magnetic Resonance Imaging 

http://www.lymphedemapeople.com/wiki/doku.php?id=magnetic_resonance_imaging 

Extraperitoneal para-aortic lymph node dissection (EPLND) 

http://www.lymphedemapeople.com/wiki/doku.php?id=extraperitoneal_para-aortic_lymph_node_dissection_eplnd 

Axillary node biopsy 

http://www.lymphedemapeople.com/wiki/doku.php?id=axillary_node_biopsy

Sentinel Node Biopsy 

http://www.lymphedemapeople.com/wiki/doku.php?id=sentinel_node_biopsy

Small Needle Biopsy - Fine Needle Aspiration 

http://www.lymphedemapeople.com/wiki/doku.php?id=small_needle_biopsy 

Magnetic Resonance Imaging 

http://www.lymphedemapeople.com/wiki/doku.php?id=magnetic_resonance_imaging 

Lymphedema Gene FOXC2

 http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_gene_foxc2

 Lymphedema Gene VEGFC

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_gene_vegfc

 Lymphedema Gene SOX18

 http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_gene_sox18

 Lymphedema and Pregnancy

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_and_pregnancy

Home page: Lymphedema People

http://www.lymphedemapeople.com

Page Updated: June 19, 2008