Today is the 15th birthday of my son Dylan, who was born with lymphedema, and his twin brother Devdan. I can’t change the fact that Dylan has lymphedema, but I can make it easier for him to live with by ensuring insurance will cover his compression garments, and that’s why I started this group and this effort.
Below is a brief overview of the history of the Lymphedema Treatment Act (LTA), told from the perspective of my family. Your own relationship to lymphedema is likely very different from mine, but our goal unites us, and for that I am grateful.
This is my lymphedema story, and today, I’d like to invite you to share your story. It can be as simple as a few sentences, or long as several paragraphs. The length doesn’t matter, but your voice does. Personal stories are a powerful part of our advocacy to increase congressional support for the LTA.
If you’ve shared your story in the past, thank you. If you aren’t sure, feel free to respond to this email, and we’ll let you know. And if you haven’t shared your story yet, we hope you will do so this week. Tips on what to include and additional information is on our My Lymphedema Story page.
Thank you for being on this journey with us!
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
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In 2006 I had never heard of lymphedema, but after the birth of my
twin boys, Devdan and Dylan, that would soon change.
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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.
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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.
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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.
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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!
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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.
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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.
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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.
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We have steadily gained more and more support
in each Congress, and have never been closer to
passing the Lymphedema Treatment Act!
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Dylan is doing great, but I know that
he would not be the healthy, happy, active young man
that he is, if he did not have his compression garments –
and for that reason I will work for as long as it takes to ensure
that the Lymphedema Treatment Act becomes law!
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