STATE LEGISLATIVE PACKET (4) BOB WEISS
=========================
Sample
Letter to State Legislator
xxxxxxxxxxxxx
xxxxxxxxxxxxx
xxxxxxxxxxxxx
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,
================================================
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
================================================
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)
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)
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