Background & History

Why This Legislation Is 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 cannot be classified under any existing benefit category in Medicare statute (law). 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 bill sponsor, Congressman 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 have been in effect in North Carolina since 2010 and in Virginia since 2004. 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 he has been our champion in the House ever since.
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
We have steadily gained more and more support
in each Congress, and have never been closer to
passing the Lymphedema Treatment Act!
Timeline
My sons are now ten-years-old. 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.
Devdan and Dylan-3
 
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.