The Lymphedema Advocacy Group is an all-volunteer organization of patients, caregivers, healthcare professionals and industry partners. Our mission is to advance lymphedema care in the United States by advocating for improved insurance coverage for the diagnosis and treatment of the disease. For this purpose we work to increase awareness of and education about lymphedema amongst lawmakers, insurance providers and other relevant entities. We support attempts to improve coverage at both the state and federal levels and encourage all members of the lymphedema community to become active participants in this process. Our primary objective at this time is passage of the Lymphedema Treatment Act.
The Lymphedema Advocacy Group is a 501(c)(4) nonprofit organization.
Lymphedema Advocacy Group
It is Lymphedema Awareness Month 2021 and no advocacy group is probably more well known than the Lymphedema Advocacy Group (LAG). They are a fierce group of advocates made up of all volunteers who have championed the Lymphedema Treatment Act (LTA) in the United States since it was first introduced into Congress in 2010.
My Support
The reason I personally support the LTA and the mission of the LAG is because lymphedema distichiasis syndrome has run in my family for 3 generations and over 100 years. While I am not of Medicare age, I have seen firsthand how my father aged with lymphedema and of course required garments. This greatly impacted my family and will continue to impact us for the rest of our lives as I have/had 7 family members impacted by this diagnosis in some form or fashion.
I developed lymphedema in 1994. In May 2017, I first met the phenomenal LAG team in person in DC. The experience was life-altering as it was the first time I really ever felt like my voice as a voter and constituent could make an impact for lymphatic healthcare. It was one of the first few times that I met other people with lymphedema. We walked the halls of Capitol Hill for miles and miles over the course of several days to share our stories. It was completely unforgettable. For as long as it takes, I will support the LTA and encourage everyone to do so by sharing their calls to action.
What’s New?
This past month I caught up with Founder and Executive Director, Heather Ferguson, to bring both our newly diagnosed and long-standing community members up to speed on the latest efforts for this year and how we can help! Here are Heather’s answers to my questions in her own words. I want to thank her and everyone at the LAG for all they do and their tireless efforts for so many millions of people across the country.
What Is The LTA?
The Lymphedema Treatment is federal bill that will improve insurance coverage for compression garments and supplies. The bill is specific to compression because that is the only component of treatment that requires an act of Congress to correct. Other coverage issues that Lymphedema patients face can be remedied through administrative process. A more in depth explanation and background information about the bill can be found at Why This Legislation Is Needed.
What Are The Goals for 2021?
To do everything possible to pass the Lymphedema Treatment Act during this Congress! During the last Congress the bill was passed in the House, but unfortunately was not taken up by the Senate. Due to changes in leadership, we are optimistic about our prospects in this new Congress, and need every person reading this to get engaged and stay engaged. The perfect first step is signing this online letter to your members of Congress, by simply filling in your name and address: Email Congress in Support of the LTA.
What Does Lymphedema Awareness Mean To You?
Better awareness goes hand in hand with passing the Lymphedema Treatment Act, as well as advancing all aspects of lymphedema care, from getting a timely diagnosis to someday finding a cure. When we began advocating for the Lymphedema Treatment Act scarcely any members of Congress or their staff knew what lymphedema was. Now, not only do they know what it is, it’s been the most supported healthcare bill for two consecutive Congresses. We need that kind of awareness outside of Congress as well. Materials to help are available at Use These Tools to Spread The Word.
What Does Advocacy Mean During a Pandemic?
COVID-19 has made in-person advocacy impossible, which is unfortunate, because face-to-face meetings with Congressional offices are extremely powerful. However, going virtual does have some benefits. Without the need to travel, which can be prohibitive due to health, family, work, or financial reasons, a lot more people can participate. We typically host our Lymphedema Lobby Days on Capitol Hill in March, but this year we will be organizing virtual Zoom meetings in late spring instead. Anyone who might be interested in joining should make sure they are subscribed to our mailing list. Subscribe here.
