Background & History

Why This Legislation Was Needed

Currently, Medicare, and consequently many other policies, do not cover one of the critical components of lymphedema treatment, the medically necessary doctor-prescribed compression supplies used daily in lymphedema treatment. As a result, many patients suffer from recurrent infections, progressive degradation in their condition and eventual disability because they cannot afford the compression supplies required to maintain their condition. 

Medicare’s failure to cover compression treatment supplies stems from the fact that these items could be classified under any existing benefit category in Medicare statute (law). Lymphedema compression supplies have a life span of about 6 months, so they do not meet the longevity requirement for Durable Medical Equipment, yet are also not disposable single use products, or considered an orthotic or prosthetic by Medicare. 

The Center for Medicare Services (CMS) does not have the authority to add or redefine benefit categories, only Congress does, hence the need for this legislation. This is explained in more detail in a written exchange between our former bill sponsor, Congressman Dave Reichert, and former Health and Human Services Secretary, Kathleen Sebelius. Click here to read their correspondence.  

States have already recognized that coverage for comprehensive lymphedema treatment is essential, and are beginning to require that private plans include this coverage.  California and Louisiana have state laws that improve coverage for compression supplies, and full lymphedema treatment mandates exist in North CarolinaVirginia, and Maryland. If you have a private insurance policy based one of these states and are still not getting coverage for your compression supplies, you may find the information here helpful. Several other states have similar legislation pending. 

The Lymphedema Treatment Act was was first introduced into Congress in 2010 by Representative Larry Kissell. Each consecutive Congress our bill has garnered more support. Additional information about the history of this bill is below. You can learn more about our current bill here.

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What follows is a brief overview of the history of the Lymphedema Treatment Act, told from the perspective of Heather Ferguson, founder of the Lymphedema Advocacy Group. 
 
In 2006 I had never heard of lymphedema, but after the birth of my
twin boys, Devdan and Dylan, that would soon change.
Devdan and Dylan
Dylan was eventually diagnosed with primary lymphedema and
was prescribed his first compression garment at seven months
of age. Upon learning of the coverage problems I reached out to
Bob Weiss (pictured with me below), who is a long-time
patient advocate and runs the website LymphActivist.org.
He gave me invaluable advice and support.
Heather Ferguson and Bob Weiss
I spent the better part of Dylan’s first two years of life
appealing denials, which led me to the decision that I would rather
work to fix the problem once and for all for everyone,
than just continually fighting for coverage for Dylan.
Devdan and Dylan-2
In 2009, I worked with my State Representative, Tricia Cotham
(seen below with Dylan and I), to introduce and pass a
North Carolina State Lymphedema Treatment Mandate.
Tricia Cotham
Later that year, I met with my Congressman, Larry Kissell
(center in the photo below), who agreed to introduce a federal bill.
The first version of the LTA, entitled the Lymphedema Diagnosis
and Treatment Cost Saving Act of 2010, was born!
Larry Kissell
After shepherding the bill through two sessions of Congress,
Kissell was not reelected. We approached Congressman
Dave Reichert (pictured below, center) to be our lead sponsor,
and was our champion in the House through 2018.
Dave Reichert
In 2016, we gained a Senate companion bill sponsored by
Senator Maria Cantwell (seen below receiving an Awareness Day
award), who continues to lead our Senate bill today.
Maria Cantwell
Representative Reichert retired at the end of the 115th Congress,
and beginning in 2019 Representative Jan Schakowsky (center below),
who had long been one of our co-leads, became our new lead sponsor.

We have steadily gained more and more support
in each Congress, and have never been closer to
passing the Lymphedema Treatment Act!
 
Dylan is doing great, but I know that
he would not be the healthy, happy, active child that
he is if he did not have his compression supplies.
 
Every phone call counts and makes a difference. Please take a couple of minutes to call your members of Congress who are not yet cosponsoring the LTA (again if you already have) and ask them to cosponsor this bill.
 
You’ll find the phone number and a brief call script at the links under the “How You Can Help” menu above and left, and links to see who our current cosponsors are in the “Current Status” box beneath the “How You Can Help” menu.