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STATE LEGISLATIVE PACKET (4) BOB WEISS

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Sample Letter to State Legislator

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Dear xxxxxxxxx

I am a New York resident who was diagnosed and treated for breast cancer a few years ago. Unlike the majority of breast cancer survivors I happen to be male. But like a large percentage of breast cancer survivors, I suffer from a chronic, incurable condition resulting from my cancer treatment—lymphedema. ***Substitute your own details***

Unfortunately, U.S. physicians and health care personnel are woefully unaware of the extent of this condition, and the protocols of its medical treatment. Medicare and other health care insurers rarely cover the medical protocols practiced in Europe for over thirty years, and recommended here in the U.S. in 1998.

I would like to propose that you sponsor urgently needed changes to current legislation as well as suggestions for new legislation to treat lymphedema. (Please see the attached suggested legislative priorities). This is not a new health care mandate that needs new funding. Rather, it is a protocol that can utilize in-place medical personnel and has been shown to be at least cost-neutral, and at best can save hundreds of millions of dollars in unnecessary treatment of avoidable infections, avoidable pain and avoidable disability and deformity.

The General Assembly of Virginia has recently passed legislation for lymphedema treatment (VA H.B. 1737 Wardrup) which was deemed to have no fiscal or budgetary impact by the Virginia Department of Corporations. The Massachusetts Senate is considering a bill (MA S.B. 848 Fargo) which will provide coverage for lymphedema treatments.

Some of these suggestions are simple, such as the fixing of a three-year old WHCRA that is clearly faulty, or enacting conforming legislation in New York. Some are suggestions that might help CMS to do their job in a professional manner. Others are suggestions for an epidemiology study, a necessary cost-effectiveness study, simple changes to the SSA to enable compliance with the WHCRA of 1998, and suggestions for new State and Federal laws to help the millions of lymphedema sufferers and SAVE MONEY in the process.

I feel strongly that many breast cancer survivors who suffer from lymphedema have not benefited from the Women's Health and Cancer Rights Act of 1998 because CMS has not seen fit to properly implement the lymphedema treatment provision according to current standards of medical treatment. Nor have the errors in wording of that three-year old Act been corrected to apply the lymphedema provisions to men, and to men and women who have not chosen reconstructive surgery. These technical corrections should be easily fixable
as a first step in any lymphedema legislative program.

There is an important fiscal aspect to this problem:
Millions of dollars are being spent unnecessarily by medical providers to treat cellulitis and lymphangitis resulting indirectly from denials by Medicare of the preventive treatment modalities accepted by NIH NCI, ACS, ISL, NLN, LRF and most other knowledgeable medical and therapeutic organizations;
Millions of dollars are being spent unnecessarily in needless appeals of Medicare denials around the country--many of which are being reversed by Administrative Law Judges who recognize that the current standard of lymphedema care includes CDT.
Millions of dollars are being wasted because the expensive Medicare-approved pneumatic pumps are ending up unused by patients who find that they don't help or have caused further bodily damage--and these same patients are discouraged from seeking the treatment that is most likely to help them because there is no coverage of this treatment.

If you decide to pursue this matter I will put you in touch with the lymphedema treatment advocate Robert Weiss who wrote the proposal and who can provide back-up to the attached legislative proposal. Thank you for your assistance in this matter.

Your constituent,

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Join us as we work for lymphedema patients everywehere:

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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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 Lymphedema 

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: Dec. 17, 2011