LymphActivist's Site

Dedicated to Lymphedema Patients and the Therapists Who Treat Them

10671 Baton Rouge Avenue
Porter Ranch, CA 91326-2905
June 21, 2015

Senator Orrin G. Hatch, Chairman
Senator Ron Wyden, Ranking Member
Senator Johnny Isakson
Senator Mark R. Warner
United States Senate Committee on Finance
Washington, DC 20510-6200
Sent to the Senate Finance Committee Chronic Care Reform at

Esteemed Senators Hatch, Wyden, Isakson and Warner,

We thank you for your efforts to improve health care for patients with chronic conditions.

My wife Pearl and I are in our eighties and have been receiving care from a Medicare Advantage organization for the last 15 years. Mrs. Weiss is a survivor of breast cancer and has chronic lymphedema as a result of the cancer therapy that saved her life 23 years ago. I am a lymphedema patient advocate and I have dedicated my life to assuring that Mrs. Weiss continues to receive the care she needs for her chronic lymphedema, and to help the millions of other lymphedema patients, who have no advocacy, receive quality care according to current medical standards.

Besides being a member of your target population, I am a contributor to the technical literature on healthcare delivery in the United States, having recently published a review of lymphedema care delivery models and economic analyses of the costs and benefits of lymphedema treatment [Stout 2013]. I have assisted in the drafting and passage of lymphedema treatment laws in California, Connecticut, Georgia, Massachusetts, New York and Virginia, and have written a bill for the coverage of lymphedema treatment by Medicare [Lymphedema Diagnosis and Treatment Cost-Saving Acts of 2010 and 2011 [H.R. 4662 and H.R. 2499] And finally, I maintain a web page for the benefit of lymphedema patients and the therapists who treat them. []

Rather than reiterating all of the reasons why lymphedema care delivery is problematic I would like to quote the abstract of a recent peer-reviewed paper dealing with the same problem experienced by Canadian lymphedema stakeholders. I would estimate that the number of lymphedema patients in the U.S. are at least ten times the Canadian lymphedema population.

"Even though it is estimated that at least 300,000 people in Canada may be affected by chronic oedema/lymphoedema, recognition of the seriousness of this chronic disease in health care is scarce. Lymphoedema affects up to 70% of breast and prostate cancer patients, substantially increasing their postoperative medical costs. Adding to this problem are the escalating rates of morbid obesity across North America and the fact that 80% of these individuals are thought to suffer with an element of lymphoedema. The costs related to these patient populations and their consumption of health care resources are alarming.

"Untreated chronic oedema/lymphoedema is progressive and leads to infection, disfigurement, disability and in some cases even death. Thus, prognosis for the patient is far worse and treatment is more costly when the disease is not identified and treated in the earlier stages. Although the number of individuals coping with chronic oedema/lymphoedema continues to increase, the disparity between diagnosis, treatment and funding across Canada endures. The reasons for this include a lack of public awareness of the condition, insufficient education and knowledge among health care providers regarding aetiology and management and limited financial coverage to support appropriate methods and materials." [Keast 2015]

Lymphedema is a chronic, progressive condition, often leading to disability if untreated or under-treated. Lymphedema often is caused by damage to the lymphatic system by trauma, surgery, radiotherapy, certain chemotherapeutical agents, or infection. It starts with lymph stasis caused by: an inability of the initial lymphatics to collect tissue fluid; the inability of the lymph vessels to transport adequate fluid; lymphatic valve dysfunction; fibrosis or removal of lymph nodes; fibrosis of surrounding tissue, abnormal lymphatic loads because of venous insufficiency or hypertension; lymphatic scarring due to infection; abnormal deposition of lipid cells or obesity. [Mortimer 2014]

The incidence of lymphedema and the medical cost of treating lymphedema in breast cancer patients was estimated the using claims data [Shih 2009]. The study found that the two-year medical costs are significantly higher for patients with lymphedema ($23,167) compared to those breast cancer survivors without lymphedema ($14,877).

Lymphedema, thought of in the past as a "blockage in the lymphatic plumbing" is increasingly found to be a condition intimately related to cardiovascular dysfunction, metabolic disease and diabetes, immune system function, wound healing, fat deposition and obesity. [Mortimer 2014] Patients with lymphedema were twice as likely to have lymphangitis or cellulitis, known to contribute to a more advanced condition and to compound medical costs. Treatment of lymphedema has been found to reduce or eliminate the incidence of cellulitis [Ko 1998, Földi 1996].

Standard treatment for lymphedema includes use of multiple tools depending on the stage, severity, source and duration of the lymphedema. Typically, an intensive phase of treatment is performed in an outpatient clinical setting by a specially-trained therapist involving manual lymph drainage (MLD), compression bandaging, decongesting exercises, patient education and meticulous skin care. The intensive phase is followed by a home care maintenance phase comprising a combination of self-MLD, self-bandaging and/or wearing of compression garments, decongesting exercises and meticulous skin care. [ISL 2013, NLN 2011, etc.]

"Lymphoedema is multi-faceted, each patient is strongly unique in the presentation and often in the combination of symptoms and associated sequelae, each patient responds to an intervention differently and each has different treatment and management preferences either forced on them by finances or the availability of treating staff. Often then there is a gulf between what might be able to be done optimally and what can be done in reality." [Piller 2003]

For this reason the treating physician and therapists must have a wide selection of tools to use for treating a particular patient at a particular stage of the condition. A grave mistake is made in looking for one "best treatment" (e.g. MLD, bandaging, compression garments, exercise, sequential compression devices) based on a controlled clinical trial on a limited sample of patients. The treating physician and trained lymphedema therapist are the only judges of what combination of protocols are called for and are likely to lead to the best measured outcome. This parallels treatment of cancer, where the treating medical team decides how much of which modality (surgery, radiotherapy, chemotherapy, hormonal therapy) is required based on the individual patient's condition.

Not all of these elements of the standard of lymphedema care are covered by Medicare in spite of evidence supporting with an intermediate level of confidence that complex decongestive therapy (CDT) alone, CDT with adjuvant compression devices, compression bandaging/compression garments alone, and pneumatic compression devices alone "produce clinically meaningful improved health outcomes for patients with secondary lymphedema" [MEDCAC 2009].

The specialized nature of manual lymph drainage and compression bandaging is not recognized by Medicare and there are no specialized CPT codes to describe these services. Therapy is statutorily limited for lymphedema treatment despite its being a treatment of a diagnosed medical condition and not necessarily rehabilitation. Compression bandages and garments are not covered and the services of measurement and fitting of these necessary medical items is also not covered.

Evidence is emerging in the last few years that early treatment of pre-clinical lymphedema has the potential of preventing or slowing progression to more severe stages and avoiding the permanent tissue changes that result from long-standing lymph stasis (lymphedema). [Box 2002, Stout-Gergich 2008, Boccardo 2009, Torres-Lacomba 2010, Zimmermann 2012]. Methods for measurement of pre-clinical lymphedema (e.g. skin thickness measurement by ultrasound or magnetic resonance imaging, bioelectric impedance, tissue dielectric constant, ultrasonic tonometry, dual beam X-ray absorptiometry, indocyanine green-enhanced lymphography, lymphangioscintigraphy, etc.) are in use in other countries and are not used widely in the U.S.

Hard evidence is also starting to emerge that early treatment of lymphedema reduces adverse clinical outcomes and costs. Using insurance claims data on a population of 1,065 individuals with cancer-related lymphedema, it was shown that introduction of a sequential pneumatic compression device for the treatment of lymphedema decreased annual rate of hospitalization from 45 to 32%, outpatient hospital visits from 95 to 90%, cellulitis diagnoses from 28 to 22%, physical therapy use from 50 to 41%, and annual health care costs from $62,190 to $50,856 [Table 3 of Brayton 2014].

A major barrier to quality care for chronic lymphedema patients was removed with the settlement of the Jimmo v. Sebelius case. Previously treatment of chronic lymphedema patients required a measured or potential improvement in outcome, but the rules regarding maintenance therapy were changed effective 01-07-14 when the following was added to Chapter 7, §20.1.2 of the Medicare Claims Processing Manual:

"Coverage of skilled nursing care or therapy to perform a maintenance program does not turn on the presence or absence of a patient's potential for improvement from the nursing care or therapy, but rather on the patient's need for skilled care. Skilled care may be necessary to improve a patient's current condition, to maintain the patient's current condition, to prevent or slow further deterioration of the patient's condition."

It is because of these data on the current burden of chronic lymphedema on the American healthcare system and the demonstrated benefits of early treatment of lymphedema before it becomes disabling, that we feel that a reform to the current Medicare coverage policies for lymphedema complement and should be a part of your efforts to reduce the staggering costs of treating patients with multiple chronic conditions. Efforts to reduce the costs of treatment of chronic disease should include measures to prevent chronic disease from becoming disabling.

Treatment of lymphedema is cost neutral and has the potential of saving money, providing a significantly improved quality of life for lymphedema patients and reducing the burden of disabilities resulting from late-stage lymphedema. [Please see the Appendix]

Our suggestions are grouped to respond to your stated three goals:

  1. Increase care coordination among individual providers across care settings;
  2. Streamline Medicare's current payment system to incentivize appropriate level of care for patients with chronic conditions; and
  3. Facilitate delivery of high quality care, improve outcomes, increase program efficiency, and reduce growth in Medicare spending.

Increase Care Coordination

Streamline Medicare Payment System

Facilitate High Quality Care

Technology Advances

Epidemiology of Lymphedema

Lymphedema Treatment is Good Business as well as Good Medicine

Respectfully submitted,

Robert Weiss, MS
Independent Lymphedema Patient Advocate

Pearl Hiat Weiss, BA, BRE
Breast Cancer Survivor, Lymphedema Patient

An Estimate of Healthcare Savings Achievable Through
Proper Lymphedema Management

The underlying principle behind this analysis is the assumption that management of lymphedema results in an immediate and significant reduction in the incidence of lymphedema-related infection. The ongoing cost of treatment of lymphedema is balanced out by the savings due to avoidance of the cost of treating recurring cellulitis, frequently on an emergency basis.

A number of separate approaches have been taken to arrive at a credible estimate of the potential savings to be achieved. The first approach was to postulate two lymphedema treatment scenarios for a woman diagnosed with and treated for breast cancer. The first scenario postulates that she receives early and continued treatment of her lymphedema according to recommended medical guidelines. The second scenario postulates that she receives no treatment for her lymphedema, but does receive medical treatment for her recurrent lymphedema-related infections. Data to support both scenarios are derived from statistics taken from recent scientific journals. The results of this study establishes, for this hypothetical case, a significant saving to her medical provider when the lymphedema is treated and managed.

Infection of the skin and lymphatic system (cellulitis/lymphangitis) is a major cause of lymphedema. It is also a major result of lymphedema. [Stoberl & Partsch 1987]. Some 10-15% of lymphedema patients experience infections each year [Swenson et. al. 2002, Kasseroller 1998]. Therefore one might expect 30,000-45,000 cellulitis cases yearly from 300,000 lymphedema patients in California. Hospital discharges for 2003 involving cellulitis of all sites and from all causes were 111,438. The average hospital stay for cellulitis was 5 days (Hospital Discharge Data 2002). At an average hospital stay cost per patient per day in California of $1763 (2003 AHA Annual Survey) this places the yearly burden for treatment of cellulitis in California at almost 1 Billion dollars, with $264-397 million estimated as related to lymphedema. If the incidence of cellulitis is reduced by 50% through the treatment of lymphedema [Ko 1998, Földi 1996] a $132-200 million saving would result, not accounting for medication cost savings or savings due to reduced disability.

Another approach taken was an attempt to extend this principle to a large population by examining actual hospital admissions data to attempt to size the burden of unmanaged lymphedema and the savings to be achieved for a larger population by treating the lymphedema. This study utilized California Patient Discharge Data for Calendar Year 2003 maintained by the California Office of Statewide Health Planning and Development. Total number of patient discharges in 2003 involving cellulitis of the arm or hand (ICD-9-CM Codes 682.3 and 682.4) was 18,876. Of this total, 307 cases involved upper limb lymphedema or swelling. These 307 cases involved an average hospital stay of 5.6 days for a total cost of $8,271,398. The total number of patient discharges in 2003 involving cellulitis of the leg and foot (ICD-9-CM Codes 682.6 and 682.7) was 62,056. Of this total, 1851 cases involved lower limb lymphedema or swelling. These 1851 cases involved an average hospital stay of 10.4 days for a total cost of $62,814,399. Similar relationships are shown between discharges with cellulitis of the lower limbs and various surgical procedures e.g.: hip and knee replacement and hysterectomy 224 cases at $25,262,301 cost; and coronary artery by-pass grafts 265 cases at $66,224,482 cost. Each of these infections is a lymphedema risk factor. Adding up the costs of only the cases of cellulitis documented as being related to lymphedema or swelling, yields a total of $162,571,000 in treatment of lymphedema-related cellulitis, well within the $132-200 million range of savings calculated using a different analysis using different data sets.

An estimate was made as to the cost of providing lymphedema treatment to the estimated lymphedema patients in California. Hinrichs found that the distribution of severities was 75% mild (Stage 1), 22% moderate (Stage 2) and 3% severe (Stage 3). Yearly costs of treatment developed in a hypothetical breast cancer scenario were $200 for Stage 1, $1550 for Stage 2 and $5500 for Stage 3. Applying the observed distribution of severity of lymphedema [Hinrichs 2004] to the estimated 300,000 California lymphedema patients and using the estimated costs of treatment, yields an annual cost of lymphedema treatment if all patients were to be diagnosed and treated of $197 million. These estimated costs are in the range of estimated savings using statistics in scientific journals and hospital databases.


[Boccardo 2009] Boccardo F, Casabona F, De Cian, F, Friedman D, Villa G, Bogliolo S, Ferrero S, Murelli F and Campisi C. Lymphedema microsurgical preventive healing approach: A new technique for primary prevention of arm lymphedema after mastectomy. Ann Surg Oncol 2009;16:703-8.

[Box 2002] Box RC, Reul-Hirche HM, Bullock-Saxton JE, & Furnival CM. Physiotherapy after breast cancer surgery: Results of a randomised controlled study to minimise lymphoedema. Breast Cancer Res Treat. Sep 2002;75(1):51-64.

[Brayton 2014] Brayton KM, Hirsch AT, O'Brien PJ, Cheville A, Karaca-Mandic P and Rockson SG. Lymphedema prevalence and treatment benefits in cancer: Impact of a therapeutic intervention on health outcomes and costs. PLOS ONE December 3, 2014;9(12)e114597.

[Campisi 2002] Campisi C, Boccardo F, Zilli A, Maccio A, Napoli F, Ferreira Azevedo W Jr, Fulcheri E & Taddei G: [Lymphedema secondary to breast cancer treatment: possibility of diagnostic and therapeutic prevention] in Italian Ann Ital Chir. Sep-Oct 2002;73(5):493-8.

[Földi 1996] Földi E: "Prevention of Dermatolymphangioadenitis by combined physiotherapy of the Swollen Arm after Treatment of Breast Cancer", Lymphology, 1996;29:48-9.

[Hewitt 2006] Hewitt M and Ganz PA. From cancer patient to cancer survivor, Lost in transition. Institute of Medicine and National Research Council. (2006) The National Academies Press, Washington, DC

[Hinrichs 2004] Hinrichs CS, Gibbs JF, Driscoll D, Kepner JL, Wilkinson NW, Edge SB, Fassl KA, Muir R & Kraybill WG: "The effectiveness of complete decongestive physiotherapy for the treatment of lymphedema following groin dissection for melanoma" J Surg Oncol. Mar 15, 2004;85(4):187-92

[ISL 2013] International Society of Lymphology. The diagnosis and treatment of peripheral lymphedema: 2013 consensus document of the International Society of Lymphology. Lymphology 2013;46:1-11.

[Kasseroller 1998] Kasseroller RG: Compendium of Dr. Vodder's Manual Lymph Drainage, Karl F. Haug Verlag, Heidelberg, 1998.

[Keast 2015] Keast DH, Despatis M, Allen JO and Brassard A. Chronic oedema/lymphoedema: under-recognized and under-treated. Internat Wound J. June 2015;12(3):328-333.

[Ko 1998] Ko DSC, Lerner R, Klose G & Cosimi AB: "Effective Treatment of Lymphedema of the Extremities", Arch Surg. Apr 1998;133(4):452-8.

[MEDCAC 2009] MEDCAC Lymphedema Panel Score Sheets, MEDCAC Lymphedema Technical Panel, Question 6

[Mortimer 2014] Mortimer PS and Rockson SG. New developments in clinical aspects of lymphatic disease. J Clin Invest. 2014;124(3):915-21.

[NLN 2011] National Lymphedema Network Medical Advisory Committee. Position statement of the National Lymphedema Network, Topic: The Diagnosis and Treatment of Lymphedema, Updated February 2011.

[Piller 2003] Piller NB and Douglass J. Manual Lymphatic Drainage -- an effective treatment for lymphoedemas. ca. 2003

[Shih 2009] Shih Y-CT, Xu Y, Cormier JN, Giordano S, Ridner SH, Buchholz TA, Perkins GH & Elting LS: "Incidence, treatment costs, and complications of lymphedema after breast cancer among women of working age: a 2-year follow-up study" J Clin Oncol. 2009 Apr 20;27(12):2007-14. Epub 2009 Mar 16.

[Stoberl & Partsch 1987] Stoberl C & Partsch H: "Erysipel und Lymphodém: Ei oder henne?" [Erysipelas and lymphedema: egg or hen?] in German Z Hautkr. 1987;62:56–62.

[Stout 2013] Stout NL, Weiss R, Feldman JL, Stewart BR, Armer JM, Cormier JN and Shih Y-CT. A systematic review of care delivery models and economic analyses in lymphedema: Health policy impact (2004-2011). Lymphology 2013;46:27-41.

[Stout-Gergich 2008] Stout Gergich NL, Pfalzer LA, McGarvey C, Springer B, Gerber LH, & Soballe P: "Preoperative assessment enables the early diagnosis and successful treatment of lymphedema" Cancer 2008;112(12), 2809-19.

[Swenson 2002] Swenson KK, Nissen MJ, Ceronsky C, Swenson L, Lee MW & Tuttle TM: "Comparison of side effects between sentinel lymph node and axillary lymph node dissection for breast cancer" Ann Surg Oncol. 2002;9(8):745-53

[Torres-Lacomba 2010] Torres Lacomba M, Yuste Sanchez MJ, Prieto Merino D, Mayoral del Moral O, Cerezo Tellez E and Minayo Mogolion E. Effectiveness of early physiotherapy to prevent lymphedema after surgery for breast cancer: randomized, single-blinded, clinical trial. Brit J Med. 2010;340:b5396.

[Zimmermann 2012] Zimmermann A, Wozniewski M, Szklarska A, Lipowicz A and Szuba A. Efficacy of manual lymph drainage in preventing secondary lymphedema after breast cancer surgery. Lymphology 2012;45:103-12.