Blogs » OPEN LTR TO CONGRESS - NLN SAMPLE (Cancer related only?)

OPEN LTR TO CONGRESS - NLN SAMPLE (Cancer related only?)

  • Below is a sample open letter to Congress; however, it seems to focus on cancer related lymphedema --- any information to add for non-cancer related lymphedema???  Please post responses.



    Medicare and other health care insurersAmerican doctors have not been schooled in the


    rarely cover the medical protocols practiced in Europe for over fifty years , and

    recommended in the U.S. in 1998 (7). The sad part of all of this is that the majority of patients

    suffer their swollen limbs in silence, being told by their physicians that there is nothing to be

    done, and that they are lucky to be alive.

    lymphatic system and its pathologies, and are for the most part unaware of the treatments that have

    been used in Europe for the last 50 years. And many of these patients are now on disability and

    bedridden with a condition that is treatable but not being treated. (Reference patient "Joell" from the

    San Francisco Bay area featured last February on the Dr. Phil show, who was not being treated for

    her lymphedema until we brought it to the medical staff's attention.)

    This under-diagnosing and under-treating of lymphedema patients costs healthcare providers

    and healthcare insurers including Medicare untold millions of dollars every year because the

    untreated lymphedematous limb is greatly at risk for infection (cellulitis and lymphangitis)

    which comes on in the course of a few hours and requires immediate treatment on an

    emergency basis. It has been shown that treatment of lymphedema greatly reduces and

    eliminates the risk of infection. (8,9)

    With the current attention in Congress on implementing the Medicare Prescription Drug,

    Improvement, and Modernization Act of 2003 and other sweeping changes to Medicare, attention has

    been diverted from inequities and inefficiencies in coverage for individual beneficiary subgroups.

    One of these Medicare subgroups comprises the 1.25 to 2 million lymphedema sufferers. Broad

    sweeping changes to save Medicare are necessary, but we are being shortsighted if we do not


    these improvements will save money

    Current Medicare policy covers some, but not all of the complex decongestive therapy (CDT)

    protocols recommended for the medical treatment of lymphedema

    protocol is manual lymph drainage (MLD) used in the treatment of lymphedema performed by a

    physical therapist in an outpatient setting. Medicare also provides pneumatic pumps, which are not

    recommended as a primary treatment modality, but are recognized as an adjunct to the primary CDT.

    The catch is that the primary recommended therapy for lymphedema includes adequate manual

    lymph drainage, bandaging, the wearing of compression garments, exercising while wearing

    compression, and skin care. Medicare does not provide compression bandages or compression

    garments, and they limit, through the Congressionally imposed therapy cap, the amount of manual

    lymph drainage. Without coverage of the recommended treatment of lymphedema, it is very difficult

    to assure patient compliance, and it almost guarantees failure of the therapy, leading to frequent

    infections requiring emergency treatment. And this failure of the therapy ironically makes the patient

    eligible for the pneumatic pump that is contraindicated without accompanying manual lymph

    drainage and compression therapy.

    make incremental changes to improve the quality of medical care—especially if.. The partially covered

    This is not a new health care mandate that needs new funding

    utilize in-place medical personnel, equipment and facilities, and has been shown to be at least costneutral,

    and at best can save Medicare and our healthcare providers hundreds of millions of dollars in

    unnecessary treatment of avoidable infections, avoidable pain and avoidable disability and deformity.

    The proposed bill is structured as a set of additions to relevant sections of Title XVIII of the Social

    Security Act, which establishes and governs Medicare

    diagnosis and treatment of lymphedema from any cause, impose quality requirements on any

    person who treats lymphedema under the law, define the standard of treatment for

    lymphedema, provide bandages, garments and devices for the treatment of lymphedema,

    provide treatment frequency, duration and number as determined by medical necessity,

    provide for quality standards for garment fitters, etc.

    . Rather, it is a protocol that can. It would provide Medicare coverage for

    The General Assembly of Virginia has recently passed legislation for lymphedema treatment (VA

    H.B. 1737 Wardrup) which was deemed to have

    Department of Corporations (10). This Virginia lymphedema treatment law took effect January 1,

    2004. The Massachusetts Senate and House are considering bills (MA S 848/2471 Fargo and H.B.

    1309 Walsh) which will provide coverage for lymphedema treatment. Similar bills are being

    considered in New York State (NY A 9208A/A 5003 Cohen and S 7005 Fuschillo), in California

    (AB-213 Liu) and in Connecticut (SB 119 Harp).

    no fiscal or budgetary impact by the Virginia

    The Massachusetts mandate analysis done by Compass Health Analytics (11) resulted in a midrange

    per member per month (PMPM) cost of the proposed mandate of $.0268 PMPM for

    2005, which would gradually increase to $.0304 by 2009. This analysis did not account for the

    expected savings resulting from the improved quality of lymphedema treatment, reduced

    infection rate or reduced disability.

    A preliminary cost-efficacy model has been presented by Robert Weiss which demonstrates, by

    means of an analytical model populated with medical journal-published statistics, the anticipated

    savings if lymphedema is treated by current medically-recommended protocols (12).

    costs to treat the hypothetical breast cancer survivor are 3.5 times more when her lymphedema

    is not treated.

    Health care

    Please understand that this is NOT a new health mandate. The staff, equipment and facilities are

    already in place in most medical providers. Most providers and insurers already claim to treat

    lymphedema, and there are no exclusions in any medical policies that we are aware of.

    Women’s Health and Cancer Rights Act of 1998 already mandates the treatment of

    lymphedema resulting from breast cancer treatment.


    We look forward to working with you on a bill to


    save Medicare millions of dollars in health carewhile assuring a greatly improved quality of life for thousands of its beneficiaries.

    (1) Tricia Neuman, Sc.D. Vice President and Director, Medicare Policy Project, The Henry J. Kaiser

    Family Foundation “Medicare 101” January 2005.

    (2) CMS Office of the Actuary, January 2003.

    (3) Yabroff KR, Lawrence WF, Clauser S, Davis WW & Brown ML:

    Survivors: Findings From a Population-Based National Sample”


    (4) Chirikos TN, Russell-Jacobs A & Cantor AB: “Indirect Economic Effects of Long-Term Breast

    Cancer Survival”

    (5) Weiss R: “Incidence of lymphedema: a literature review” plenary session presentation at the 6th

    International NLN Conference “New Frontiers in Lymphedema Research and Therapy”, Reno, NV

    October 2004. (to be published in

    International Society of Lymphology, Executive Committee: "The Diagnosis and Treatment of

    Peripheral Lymphedema, Consensus Document”,

    (7) Rockson SG, Miller LT, Senie R, Brennan MJ, Casley-Smith JR, Földi E, Földi M, Gamble GL,

    Kasseroller RG, Leduc A, Lerner R, Mortimer P, Norman SA, Plotkin CL, Rinehart-Ayres ME &

    Walder AL: “Workgroup III: Diagnosis and Management of Lymphedema”

    1998;83(12 Supplement):2882-5, American Cancer Society Workshop on Breast Cancer Treatment-

    Related Lymphedema, New York, NY, February 20-22, 1997.

    Földi, E: "Prevention of Dermatolymphangioadenitis by Combined Physiotherapy of the Swollen

    Arm after Treatment of Breast Cancer",

    (9) Ko DSC, Lerner R, Klose G & Cosimi AB: “Effective Treatment of Lymphedema of the


    (10) State Corporation Commission, “2003 Fiscal Impact Statement—Bill Number HB1737” March

    4, 2003.

    (11) Commonwealth of Massachusetts, Mandated Benefit Review “Review and Evaluation of

    Proposed Legislation Entitled: ‘An Act Providing Coverage for Lymphedema Treatments’

    Companion bills: Senate Bill No. 848 & House Bill No. 1309” Provided for: The Joint Committee on

    Insurance, Division of Health Care Finance and Policy, Commonwealth of Massachusetts, July 26,


    (12) Weiss R: "A Cost-Efficacy Model for Treatment of Lymphedema" a workshop given at The

    First Montreal International Lymphedema Congress "Lymphedema: A Health Care Problem"

    Wyndham Hotel, Montreal, Quebec May 28- 30, 2003.

    “Burden of Illness in CancerJ Natl Cancer Inst 2004;96:1322–Cancer Practice, Sept. 2002;10(5):248.Lymphology )Lymphology, 2003;36:84-91.Cancer, Dec 15,Lymphology 1996;29:91-4.Arch of Surg April 1998;133:452-8.


    An Open Letter to my Congressional Representatives

    One of the major policy challenges facing Medicare is “strengthening protections for low-income,

    chronically ill, and otherwise vulnerable beneficiaries” (1). It is further pointed out that the Medicare

    population will grow by 85% in the next 25 years, growing from 42.7 million to 79.0 million by 2030

    (2). The problem is further compounded for cancer survivors. “Cancer survivors have poorer health

    outcomes than do similar individuals without cancer across multiple burden measures. These

    decrements are consistent across tumor sites and are found in patients many years following reported

    diagnosis”(3). Economic losses are not limited to healthcare providers. The indirect economic effects

    of long-term breast cancer survival were studied by Chirikos et. al. (4) with the conclusion

    “Clinicians and policy makers must seek ways to minimize the indirect economic losses attributable

    to breast cancer.”

    What is proposed here is a piece of “smart legislation” which will target a growing segment of

    the Medicare population and provide improved access to effective, conservative, proven

    treatment while saving precious Medicare money and minimizing patient economic burden. We

    are asking you to help us achieve this goal by sponsoring our Lymphedema Treatment Cost

    Saving Bill of 2007.

    The estimated number of cancer survivors alive in 2005 is 10,454,000 by American Cancer Society

    projections. Best estimates found in medical literature of the incidence of lymphedema caused by

    cancer treatment is approximately 20%, (5) meaning that there will be an estimated 2 million cancer

    survivors who would benefit from lymphedema treatment. Sixty one percent of cancer survivors in

    2005 are over 65 years of age (NCI estimate), meaning that as many as 1.25 million Medicare

    beneficiaries who are cancer survivors will require treatment for their lymphedema in 2005. To this

    burden is added a percentage of survivors of various surgical and radiative procedures such as

    coronary artery bypass, hip and knee replacement, head and neck surgery, survivors of repeated

    cellulitis and lymphangitis episodes and patients with primary lymphedema.

    Unfortunately, U.S. physicians and health care personnel are woefully unaware of the extent of this

    condition, and the protocols of its medical treatment.