Ever wonder what the history of the Lymphedema Treatment Act is?
What follows is a brief overview told from the perspective of my family.
I hope you will be inspired by how far we have come!
Every day we get closer to closing the insurance coverage gap for compression supplies.
We are still collecting new/updated stories for sharing with members of Congress.
The story submission form includes suggestions for the most important current information to include.
***
In 2006 I had never heard of lymphedema, but after the birth of my
twin boys, Devdan and Dylan, that would soon change.
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.
He gave me invaluable advice and support.
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.
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.
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!
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.
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.
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.
Together, we will pass the Lymphedema Treatment Act!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
Visit the LTA Website