Vol. 26 No. 4 - Advocate for Aging Lymphedema Patients: Help Pass the Lymphedema Treatment Act!

By: Elaine Eigeman, LSAP, LAG Chair, NWLC board; Seattle, WA

While the 20th Century wound itself down in 1999, I shifted focus to endure a full year of intensive treatments for Stage 3 bilateral breast cancer and lymph node dissections. I pushed past my fears by delving into the science of cancer treatment. After the 21st Century got started, lymph swelling filled both hands and arms, and my emotional challenge and learning curve got even steeper.

Call to Patient Advocacy:

My call to serve as a lymphedema (LE) patient advocate came during LE support meetings around a kitchen table at Cancer Lifeline (CLL), where we met to share stories, techniques, and encouragement for managing self care. It called most clearly on one rainy night when a new patient named Molly suddenly stopped sobbing, studied my bandaged arms, dried her tears, and declared that, if I could do it on two arms, she could do it on one.

Molly went home to the next county, from which her husband had driven her that dark winter night, and joined a therapist and other patients to start a local support group. Apparently, the only qualifications I needed to be an advocate were two bandaged arms and a can-do attitude.

Urgent Advocacy Goal: Pass the Lymphedema Treatment Act (LTA),
H.R. 3877.

The focus of this issue of LymphLink is “Aging and Frailty.” So it is appropriate that I use this article to tell you about my urgent advocacy focus for seniors with chronic LE who have no coverage for their doctor-prescribed gradient compression garments, bandages, and supplies, regardless of their medical need.

When denying coverage, Medicare cites the lack of a benefit category under durable medical equipment (DME). Patients are asked to manage their lifetime home care without the benefit of this time-proven and cost-effective component required for their ongoing treatment. I personally know many seniors who suffer painful, progressive diseases requiring more costly treatments (which, ironically, are covered) because they cannot afford these essential supplies.

I first joined the WA-State Team of Lymphedema Patient Advocates and Heather Ferguson’s Lymphedema Advocacy Group (LAG) at its 2011 Lobby Days in Washington, DC. We learned in our DC meetings that wide bipartisan support is crucial and that House Republican leaders will set the agenda, along with committees of jurisdiction through which the bill must first pass. Every office asked us to provide elusive population and cost figures in order to get full support from leaders in Congress (we are still struggling to gather scant data on this underserved group of patients).

I then became the LAG board chair, and our WA-Team persuaded Republican Rep. Dave Reichert to lead a bipartisan team to introduce the LTA (H.R. 3877). Drawing on his earlier work to vet the bill, to study Medicare’s stance, and to discern what needs legislative change, Rep. Reichert shaped the LTA to enable a benefit category for doctor-prescribed compression supplies. 

Calling All NLN Members to Advocate:

NLN members represent the broadest base of citizens who understand LE patients’ needs. We cannot pass the LTA in Congress without your advocacy! You are the ones who best understand the plight of seniors suffering without compression care: LE researchers, medical providers, patients, therapists, nurses, manufacturers and distributors.  Increasingly, even private insurers are reducing coverage as they choose to follow Medicare guidelines. 

Please help us turn this around! Write your Representative. Join your State Team. Learn more: http://www.LymphedemaTreatmentAct.org

Abundant Luck and Sources of Inspiration:

At the turn of this century, when I acquired LE, I was lucky to be living in Seattle, one of the few US cities in which pioneering therapists were treating LE patients, teaching self care, training therapists, and developing products to ease the burden of daily bandaging.  In my time of critical need, Komen gave CLL a grant to provide classes and support groups for LE patients, and my supportive husband asked to help with my care. 

I now serve on the Northwest Lymphedema Center (NWLC) board as a patient advocate, helping to provide resources and education in patient self-care. I also want to help patients self-advocate by working together to create a supportive community in our region and asking local non-profits, therapists, medical providers, and suppliers to collaborate on their behalf. 

I take inspiration from Lynn Fass, NWLC’s extraordinary patient educator, and LSAP’s Joan White, guiding light for the Lighthouse Lymphedema Network and fellow LSAP graduate.  

Laying a Foundation under
Advocacy Work:

I am grateful that my search for deeper understandings led me to NLN’s Lymph Science Advocacy Program (LSAP 2012) from which I draw research perspectives in my life and work. Although my background is education, literature, and sales, I like to look to science when questions get tough, as they did with cancer and LE.  

In the two years since I joined LSAP, I have asked questions differently, taken in information with more understanding, and done my advocacy work with a stronger scientific foundation. I now look forward to reading research perspective in LymphLink because my base of knowledge was broadened by LSAP. I now recognize contributors to research being done to improve medical practice.  I encourage others who hear the “call” to patient advocacy to apply to LSAP in 2016 to build their base of knowledge.