LymphActivist's Site

Dedicated to Lymphedema Patients and the Therapists Who Treat Them


Robert Weiss

Robert Weiss is a retired aerospace systems engineer with a Bachelor of Mechanical Engineering degree from City College of New York and a Master of Science degree from the University of California at Los Angeles. Robert retired from his 41-year employment as aerospace systems engineer and manager to learn about lymphedema and its treatment and to find informed medical care for his wife Pearl, then a 5-year survivor of breast cancer with lymphedema. He became a patient advocate to help Pearl, wending his way through the medical and insurance wilderness where lymphedema was a condition that was mostly unknown, mis-diagnosed, under-treated and under-insured. Bob used the knowledge he gained to become a lymphedema patient advocate and activist and continues to provide assistance to hundreds of cancer survivors and others with this chronic condition.

Robert has completed 80 hours of lymphedema therapy training with the Dr. Vodder School of North America (2003), is a graduate of the National Breast Cancer Coalition's Project LEAD (2004) and Quality Care LEAD (2007), the National Lymphedema Network's Lymph Science Advocacy Program (2002 and 2004) and was designated Adjunct Courtesy Faculty, University of Missouri Sinclair School of Nursing (2011-2012).

Mr. Weiss is a member of the Cochrane Collaboration Breast Cancer Group panel that performed a systematic review of manual therapy for lymphedema following cancer treatment, Co-Chair of the American Lymphedema Framework Project Insurance and Health Policy Committee and a member of its Steering Committee, former co-chair of the NLN Reimbursement & Legislation Committee, and a member of the Advisory Board of the Circle of Hope Lymphedema Foundation. Bob writes for eLymphNotes, StepUp—SpeakOut and many on-line lymphedema lists and Facebook lymphedema groups, and maintains a website called "LymphActivist's Site--Dedicated to Lymphedema Patients and the Therapists Who Treat Them". He lectures at lymphedema conferences on incidence and prevalence of lymphedema, breast lymphedema, cost-efficacy of lymphedema treatment, insurance, reimbursement and legislation.

Papers he has authored or co-authored relate to: the incidence and prevalence of lymphedema; the cost-efficacy of lymphedema treatment; access to and coverage of lymphedema treatment; lymphedema care delivery; breast lymphedema; and coverage of lymphedema compression bandages and garments.

In his capacity as an independent patient advocate Bob represents patients appealing denials of lymphedema treatment at Administrative Law Judge (ALJ) hearings, and has developed an alternative interpretation of the Social Security Act which shows that lymphedema compression bandages, garments and items meet the Medicare requirements for prosthetic devices, and should be covered by Medicare. This logic has been used in over 50 ALJ appeals and has resulted in over 30 ALJ reversals of Medicare denials. Robert has assisted in the drafting and passage of lymphedema treatment laws in California, Connecticut, Georgia, Massachusetts, New York and Virginia, and wrote the Lymphedema Diagnosis and Treatment Cost-Saving Acts of 2010 and 2011 [H.R. 4662 and H.R. 2499].

Bob is dedicatee of Lymphedema Caregiver's Guide Kearse, McMahon & Ehrlich, San Francisco, CA (2009). He has been selected as a "PCORI Merit Reviewer" for the Patient-Centered Outcomes Research Institute and has received the "Best Advocate" award from NLN in 2006.

Pearl Hiat Weiss

Pearl Hiat Weiss, was born and grew up on Manhattan's Lower East Side. She holds Baccalaureate degrees from Brooklyn College and the Jewish Theological Seminary of America and has completed graduate studies in Educational Psychology and Human Relations Studies at New York University. Pearl was a Teacher of English and Hebrew in the New York City Junior High School System and a teacher of Hebrew language in parochial schools. She was diagnosed with invasive breast cancer in 1991. Intensive cancer treatment left Pearl with lymphedema. The first two of Pearl's six lymphedema-related cellulitic infections were misdiagnosed, and her lymphedema was not diagnosed and treated until after her third infection.

She is a 21-year survivor of breast cancer (21/24 nodes positive, MRM, 6 weeks radiotherapy, 10 months chemotherapy, 5 years Tamoxifen) who developed lymphedema after surgery and radiation. She has had six cellulitic infections and has been controlling her lymphedema for 16 years through the meticulous application of the gold standard of lymphedema management — complex decongestive therapy (CDT). Her affected arm has been returned to nearly its original pre-lymphedema dimensions through a continuing daily regime of self-lymphatic draining, compression bandaging, exercise and the wearing of compression all day and night.

Pearl is Bob's sounding board and resident lymphedema resource. She has worked with her husband Bob ("LymphActivist") in his lymphedema advocacy since 1996 and through six years of drafting of the Lymphedema Diagnosis and Treatment Act of 2010. She continues to work with Bob in assisting new lymphedema patients cope with this misunderstood condition. She attends meetings of cancer survivor and lymphedema support groups to discuss methods of lymphedema self-management, available treatment materials and achievable results of treatment, and to discuss the physical and emotional impact of lymphedema.