Skip to Content

What Does Passage of the Lymphedema Treatment Act Mean for You?

What Does Passage of the Lymphedema Treatment Act Mean for You?

Advocates have been trying to get the Lymphedema Treatment Act passed in Congress for over a decade. Things move slowly — often too slowly — but finally, the dedication and hard work of many has paid off.

The Lymphedema Treatment Act (LTA) was passed into law on December 23, 2022. This new law goes into effect January of 2024 and will require Medicare to cover medically necessary lymphedema compression garments.

The Center for Medicare Services (CMS) doesn’t have authority to add or redefine benefit categories; only Congress does. That’s why this law was needed.

Passage of the LTA is a huge deal, but first, a brief recap:

What is lymphedema?

Lymphedema is a life-altering condition that affects up to 10 million Americans and hundreds of millions worldwide. Lymphedema can occur following treatment for other types of cancer, not just breast cancer. In fact, as stated on the Lymphatic Education and Research Network’s site:

All cancer treatment survivors, including those of melanoma, prostate and ovarian cancer, are susceptible to developing lymphedema.

Lymphedema most commonly presents in the arms or legs, but can impact other areas of the body such as the chest, head, neck and genitals. Physical trauma and certain diseases, can trigger lymphedema, and primary lymphedema means a person is born with the condition.

You might want to read: What’s a Breast Cancer Patient’s Real Risk?

As stated on The Lymphedema Treatment Act’s website:

The recognized standard of care for lymphedema is Complete Decongestive Therapy (CDT). CDT comprises four interacting elements applied in two phases (acute and ongoing): manual lymph drainage (MLD), compression therapy, lymph drainage exercises, and skin care. Each of these four elements are interdependent and imperative to the overall success of treatment however the most basic element is the application of compression to the swollen body part. 

Compression is to lymphedema what medication is to many other diseases — indispensable! 

Many folks living with lymphedema have struggled for too long to properly manage their lymphedema due, in part anyway, to the expense of these specialized, medially required compression garments. This lack of consistent, proper treatment can, and often does, result in recurring infections, progressive degradation in their condition, and eventual disability.

Passage of the LTA is a huge deal not only because Medicare will now be required to cover these compression garments, but because private insurers generally follow suit aligning themselves with what Medicare covers. Therefore, it’s expected they will do so here and offer coverage for compression garments as well.

So, if you’re not on Medicare, changes should be coming with your insurers too. (I know, more waiting.)

Prerequisites for Medicare coverage will be an official diagnosis of lymphedema, along with a prescription deeming the garments as a medical necessity. As I understand it, this law only impacts compression garments. Other things like pumps, are not included.

If you’ve been diagnosed with lymphedema and need to use compression garments daily to help manage it, you should expect some relief as far as covering the expense of medically-needed garments prescribed by your doctor.

Again, as I understand it, it’s likely there’ll be just two compression garments covered at a time every six months. Not enough, but something.

For patients like me, and perhaps you, who wear compression garments for preventative purposes only, coverage would not be available, as there is no official diagnosis or prescription.

But for the millions of folks out there who do have a diagnosis, and are struggling to pay the out-of-pocket and too often out-of-reach expense of these compression garments, this is a vital step toward providing at least some relief.

If you have questions, many of them are addressed on the LTA’s website.

Later this year, there will be a public comment period regarding the LTA. The Centers for Medicare and Medicaid Services (CMS) is required to offer this comment period before making significant changes to existing coverage. You can sign up for the LTA’s newsletter if you want to stay informed as to when that will happen. I’ll try to keep you informed via my newsletter and social media pages too.

This much-needed new law will have considerable impact. If you, or someone you know, is impacted by lymphedema, relief can’t come soon enough.

Thank you to all the hard-working advocates who helped get this bill passed, and thank you to members of Congress who voted in favor of its passage.

Finally, thank YOU for sharing this post and helping to spread the word!

Advocacy (along with persistence) works!

Above image via Lymphedema Treatment Act’s Facebook page.

Do you have lymphedema, and if so, have you struggled to pay for compression garments?

How will this new law impact you or someone you know?

M

Wednesday 15th of March 2023

I have also read the law in its' entirety.

On Medicare, with a secondary BCBS (not supplemental), I received one "vest," one glove, and a gauntlet (prescription clearly stated glove), last summer. The cost stated to the government and BCBS was exorbitant, many times actual cost. The vest was of poor quality, did not fit, and caused pain when tried to be worn. The sleeve was a "major brand name," but mediocre quality, and wore out in just weeks, so weak it did not compress. The gauntlet was unusable; if you need a glove, a gauntlet does not function as needed, simply resulting in sausage fingers that turn purple. Horrible and dangerous. Items were non-returnable and could not be exchanged, after waiting for months for arrival. No one anwered calls, texts, or emails.

I have written to my State and Federal representitives, all of whom responded to a thoughtfully written and briefly crafted email with brief, uninformed platitudes. Worthless.

Hence, at this point, the law is worth nothing for me, and I will have to continue to purchase appropriate garments out of pocket. By the way, my garments wear out in roughly four months, but I have only two options: 1) pay for my own garments, or 2) endanger myself and face worsening the condition and driving into a highest stage of Lymphedema. We all know what the end stages are, and should not risk going there!

Nancy

Wednesday 15th of March 2023

M, I don't know your situation, so I can't speak to it. It sounds very frustrating though. I'm sorry you've had to deal with disappointing garments and poor responses. The LE Treatment Act doesn't take effect until Jan 2024, so I wouldn't say the law is worthless yet. Perhaps you'll get better resolution after that. I hope so. Thank you for sharing about your experience.