History of the LTA

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 Carolina, Virginia, 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.

Prior to passage of the Lymphedema Treatment Act (LTA), Medicare, and consequently many other policies, did 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, patients often suffered from preventable infections and hospitalizations, progressive degradation in their condition, and in some cases, eventual disability because they could not afford the medical supplies needed to maintain their condition.

The LTA closed this gap in coverage by creating a Medicare benefit category specifically for lymphedema compression treatment supplies. Medicare had previously been unable to cover these items because they could not be classified under any of the existing benefit category.

The language of the House and Senate bills during the 117th Congress, the session during which the bill became law, can be read here: House bill, Senate bill.

A legislative fix was necessary because only Congress has the authority to create a new Medicare benefit category. The below graphic outlines the 13 year effort led by the Lymphedema Advocacy Group to pass this historic legislation and improve access to care for millions of patients!

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.org. 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.

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.

Why This Legislation Was Needed

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