Sample Letter to Your Congressional Representatives
In support of lymphedema legislation
Letter to Your Congressional Representatives
Dear [Senator or Congressman’s Name],
I would like to discuss the following proposal with you or one of your
staffers. I am prepared to meet in Washington or at your home office at my
own expense to discuss these items. They are urgently needed changes to
current legislation as well as suggestions for new legislation.
Some of these suggestions are simple, such as the fixing of a three-year old
WHCRA that is clearly faulty. 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 a
new law to help the millions of lymphedema sufferers and SAVE MONEY in the
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.
SUGGESTED LEGISLATIVE PRIORITIES IN THE TREATMENT OF LYMPHEDEMA
1. Fix the faulty Women's Health and Cancer Rights Act of 1998 (WHCRA) 1999
Omnibus Consolidated and Emergency Supplemental Appropriations Act (HR 4328:
A. The title of the law needs changing. The title "Women's Health and
Cancer Rights Act" implies that it confers certain rights only to women. In
fact, this has been used to deny treatment of a male breast cancer survivor
suffering from lymphedema. Nothing in the wording of the law deals with the
sex of the patient. In fact, the law deals with obligations of the medical
providers who perform mastectomies, and what treatment they must provide to
their patients for secondary results of their treatment.;
B. Most urgent is the erroneous wording of the law that, if read
literally, says that a mastectomy patient must elect reconstructive surgery
before being eligible for treatment of lymphedema resulting from the
mastectomy. This was obviously not the intent of the law. In a
contemporaneous law on the same subject, the Breast Cancer Patients'
Protection Act of 1998 (California AB-7 Brown), the wording did not have the
logical quirk of the Federal law;
C. The word lymphedema is used incorrectly in the plural in the Federal
law. It should be singular, i.e. "lymphedema" and not "lymphedemas".;
D. Consider adding a provisiion similar to that found in the California
Breast Cancer Patient Protection Act of 1998 (AB-7 Brown) not allowing
treatment to be denied by anyone who is not a licenced physician or surgeon
knowledgible of the condition for which treatment is being denied.
Subparagraph (c) of AB-7 Brown reads: "(c) No individual, other than a
licensed physician and surgeon competent to evaluate the specific clinical
issues involved in the care requested, may deny requests for authorization of
health care services pursuant to this section."
E. Support and bring to the floor H.R. 887 Kelly and S. 331 Biden which
would amend the Internal Revenue Code of 1986 to incorporate provisions of
2. The provisions of the four year old Women's Health And Cancer Rights Act
of 1998 have not been implemented by CMS. There are conflicting
interpretations of what constitutes the current standard of medical treatment
of lymphedema, regional medical policies differ as to what constitutes
lymphedema treatment, Medicare decisions on lymphedema treatment denials
around the country are frequently based on irrelevant interpretations of
federal regulations and Medicare policies, and patient appeals of Medicare
denials are frequently reversed by Medicare Administrative Law Judges. New
treatment methods have been accepted in the last ten years but Medicare
policies have not been updated to reflect these new procedures. Lymphedema
treatment centers in Los Angeles and New York City have been forced to close
because of uncertainties and delays in Medicare reimbursement. There is a
shortage of trained lymphedema therapists because therapists are not learning
the new treatment techniques and entering the field because of current
uncertainties in whether they can subsist. A priority should be the assurance
of implementation of previously enacted laws which have not yet been
implemented by the DHHS:
A. Lymphedema treatment provisions of the Women's Health and Cancer
Rights Act of 1998 (WHCRA):
i. The Agency for Healthcare Research and Quality (AHRQ) should be
directed to review current medical literature and establish a definition of
the current standard of care for lymphedema treatment to be used by CMS to
develop a National Policy;
ii. CMS should be directed to open a National Issue leading to a
National Medicare Policy on the treatment of lymphedema. Local policies,
where they exist, are conflicting, and coverage is frequently denied.
Treatment standards accepted internationally and nationally are being ignored
or misinterpreted (e.g. Medicare Coverage Decision on Lymphedema Pumps). At
least two strawman national policies have been submitted to HCFA/CMS which
could be used a starting points for medical and fiscal discussions.
iii. CMS should be directed to include an essential element of the
medically-accepted lymphedema treatment protocols in their coverage, i.e.:
compression bandage systems and compression garments. Expensive appeals to
Medicare Administrative Law Judges frequently lead to reversals of denials;
B. The appeal provisions of the Medicare, Medicaid and SCHIP Benefits
Improvement and Protection Act of 2000 H.R. 5661 (BIPA) which were to have
been implemented by 15 October 2001, were postponed, and the proposed new
policy will make it extremely difficult for an individual to appeal CMS
denials of treatment or denials to consider outdated or non-existent policy.
Insure that the provisions of BIPA are implemented by the DHHS Departmental
Appeals Board (DAB).
3. Direct new legislation to add an interpretative paragraph to the
prosthetics definitions section of The Social Security Act Section 1861(s)(8)
or to the orthotics definitions section of The Social Security Act Section
1861(s)(9). The logic is that compression bandage systems, compression
garments and manually-adjustable compression devices are required in the
daily care of lymphedema as a part of the medically-accepted treatment
protocols, and that the function of these systems is to provide required
continuous support to a body organ (the skin) and support to and aid to the
functioning of the impaired internal lymphatic system.
The addition would allow CMS to cover the required compression systems
in the treatment of lymphedema at home. Possible wording (with the additional
text in CAPS) might be:
"Section 1861(s)(8) prosthetic devices (other than dental) which replace
all or part of an internal body organ (including colostomy bags and supplies
directly related to colostomy care AND COMPRESSION SYSTEMS DIRECTLY RELATED
TO LYMPHEDEMA CARE), including replacement of such devices, and including one
pair of conventional eyeglasses or contact lenses furnished subsequent to
each cateract surgery with insertion of an interocular lens;"
or: "Section 1861(s)(9) leg, arm, back, and neck braces, SHORT-STRETCH
ELASTIC SUPPORT SYSTEMS, and artificial legs, arms and eyes, including
replacements if required because of a change in the patient's physical
Such a law was proposed by Congresswoman Patsy Mink (Dem-HI), but with
the recent death of Congresswoman Mink it is unclear what will be the fate of
her bill, H.R. 4154.
4. Direct the National Center for Health Statistics (NCHS) of the Centers for
Disease Control and Prevention (CDC) to perform a study of the incidence and
severity of lymphedema. The study should answer questions such as:
a. What is the current number of lymphedema sufferers in the U.S.?
b. What is the distribution of lymphedema between Primary and Secondary?
c. For primary, what is the incidence of congenital and tarda lymphedema?
d. For primary and secondary what is the distribution between lower limb,
upper limb, abddomen, chest and breast, facial, whole body lymphedema?
5. Authorize and fund a specific study and analysis by the Agency for
Healthcare Research and Quality (AHRQ) to demonstrate the economic benefits
of treatment of lymphedema. The study would involve the reviewing of the
medical records of a group of patients who have been treated for cellulitis
or lymphangitis with the object of showing how much was spent to treat
cellulitis of the upper or lower limb in patients with diagnosed and
non-diagnosed, and treated and not treated lymphedema. Statistical review of
the data plus a costing of the treatment and the costing of the cost of
managing the lymphedema would demonstrate the cost effectiveness of
lymphedema management. Alternatively the study might involve the analysis of
all breast cancer patients' records for incidence of cellulitis as a function
of diagnosed or undiagnosed lymphedema and for treated versus untreated
6. This is a good time to present a new law to treat lymphedema from all
causes, primary as well as secondary, as a means of REDUCING medical costs to
citizens as well as the Government. Such legislation is being developed by
Senator Susan Fargo in Massachusetts. The time has come to fight this "hidden
epidemic" lymphedema. Elements of this new legislation might include:
a. A mandate that all health insurance providers cover the costs of
treatments for lymphedema;
b. Treatment defined to include a complete course of manual lymph
drainage/complete decongestive therapy (Phase 1) when medically required
performed by physical therapists and message therapists licensed or certified
by the appropriate governing board to perform treatments for lymphedema;
c. Initial course of treatment (Phase 1) shall include training the
patient to perform self treatment in a home setting (Phase 2), including
self-manual lymphatic drainage, bandaging, wearing and care of compression
garments, use of specialized manually adjustable devices, donning aids, and
other required ancillary equipment and techniques for measurement;
d. Include coverage for follow-up treatments when medically required or
to verify home techniques;
e. Include coverage of any compression sleeves and bandages recommended
by the patient’s qualified caregiver with replacements when required to
maintain the compressive function;
f. The course of therapy should be determined by a qualified physician
knowledgible of the diagnosis and current treatment of lymphedema;
g. Denials of treatment of lymphedema shall only be made by a licensed
physician or surgeon who is qualified to treat the condition for which
treatment is being denied.
h. Periodic measurements shall insure the effectivity of the treatment
plan and patient compliance, and be used to modify the treatment plan as
required or to determine the need for followup courses of treatment.
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
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.
Your Telephone Number
Courtesy of Bob Weiss
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.
Lymphedema People / Advocates for Lymphedema
For information about Lymphedema
For Information about Lymphedema Complications
For Lymphedema Personal Stories
For information about How to Treat a Lymphedema Wound
For information about Lymphedema Treatment
For information about Exercises for Lymphedema
For information on Infections Associated with Lymphedema
For information on Lymphedema in Children
Lymphedema People - Support Groups
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.
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!
MEN WITH LYMPHEDEMA
If you are a
man with lymphedema; a man with a loved one with lymphedema who you are
to help and understand come join us and discover what it is to be the
instead of the sufferer of lymphedema.
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.
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.
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.
For our Google fans, we have just created this online support group in Google Groups:
Group email: All-About-Lymphedema@googlegroups.com
If you an AOL fan and looking for a support group in AOL Groups, come and join us there.
Lymphedema People New Wiki Pages
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
working on hundred more. Come
take a stroll!
are not for Lymphedema
People Online Support
and Pain Management
Lymphatic Drainage (MLD) and Complex Decongestive Therapy (CDT)
Associated with Lymphedema
to Treat a Lymphedema Wound
Infections Associated with
para-aortic lymph node dissection (EPLND)
Needle Biopsy - Fine Needle Aspiration
Lymphedema Gene VEGFC
Lymphedema Gene SOX18
Home page: Lymphedema People
Page Updated: May 22, 2008