The Lymphedema Treatment Act

The Lymphedema Treatment Act is a federal bill currently under review. Introduced in 2014 by four United States representatives, this bill would help provide coverage for the medically necessary compression garments for patients suffering with lymphedema. Before discussing the Lymphedema Treatment Act further, it’s important for you to understand the medical condition.

Lymphedema an incurable medical condition and can be caused by injury, trauma or congenital defects in the lymphatic system. The lymphatic system covers the entire body. It is a very intricate structure of nodules that filter lymphatic fluid. As muscles in the body contract, they apply pressure to the lymphatic vessels and this in turn, causes lymphatic fluid to move through the body. The lymph nodes contain a series of one-way valves allowing the lymphatic fluid to flow in only one direction. When the normal flow of the fluid is blocked, a condition called lymphedema occurs. The lymphatic fluid collects in surrounding tissues and causes painful swelling.

Lymphedema can be a common side effect from breast cancer surgery. In many breast cancer surgeries, doctors remove the sentinel lymph node in order to assess whether cancer has spread. If cancer is found in the sentinel lymph node, more nodes may need to be removed to contain the cancer. As these nodes are removed, the natural flow of the lymphatic fluid is disrupted and fluid can begin to collect in the upper arms or other areas. Since each patient is different, there is no way to know, at the time of surgery, which ones will be affected and suffer from lymphedema. Lymphedema doesn’t always appear immediately after surgery. It can occur any time afterward and can be exacerbated by injury, insect bites, needle sticks or even having blood pressure taken on the arm where lymph nodes were removed.

The management of lymphedema includes manual lymphatic drainage, which can be performed by a licensed lymphedema therapist, through compression pumps or with compression garments. “Compression garments,” according to the breast cancer website, “are designed to do just what their name suggests: apply pressure to the arm, hand or trunk to keep lymph moving in the right direction. All of the garments are made of flexible fabric. Sleeves are tighter at the bottom than they are at the top. This helps create the graded (or ‘gradient’) pressure that keeps the lymph moving out of the arm.” Compression garments are made from various materials including spandex, wool and latex. There are many websites that offer compression garments. One of the sites, Lymphedivas, offers stylish garments in a variety of colors and designs.

Compression garments for lymphedema are expensive and are often considered “medically unnecessary” by some insurance companies that will not cover treatment. Representatives Dave Reichert (R-WA), Earl Blumenauer (D-OR), Leonard Lance (R-NJ) and Jan Schakowsky (D-IL) introduced the Lymphedema Treatment Act, H.R. 1608. This bill is to aid senior adults in obtaining compression garments. These representatives were concerned that those suffering with lymphedema and are under the Medicare plan would be unable to have access to compression garments because they were not covered by current Medicare guidelines. Reichert says, on his website, “We should be enabling seniors who suffer from lymphedema to have the best possible access to necessary treatments for their condition. Making sure that Medicare covers compression garments is a common-sense way to give individuals real hope to fight back against this chronic condition and obtain their best possible quality of life.”

Although this bill is specifically targeting the Medicare system, it would set a precedent for all insurance companies, hopefully making medically necessary compression garments available to those who need them.

The Lymphedema Treatment Act is currently active in the 114th Congress, which runs from the beginning of 2015 to the end of 2016. You can read more about the bill here and find out how you can contact your representatives to urge them for their support.

This bill is important to me because I suffer from lymphedema. When I had surgery for breast cancer, I was never told I was at risk of developing lymphedema. I had four lymph nodes removed in my right arm and two removed in my left. Months after surgery, I began to notice an uncomfortable swelling and tightness in my upper arms. I did not know what it was, and went to see my doctor who me I had lymphedema. She recommended that I see a certified lymphatic therapist to receive manual lymphatic drainage.

I did the drainage for several months and did receive some relief, but the fluid kept coming back and collecting around my upper arms, so my doctor prescribed compression sleeves and gauntlets. When I went to purchase them, I was shocked to find the sleeves were almost $200 each and the gauntlets were just under $70 each. I was thankful I had good insurance and was able to get two pairs per year, but I’ve found that the sleeves and gauntlets wear out quickly from daily use. I need at least seven pairs so I can rotate every day of the week, but I can’t afford them and my insurance won’t cover any more for two years. The compression sleeves and gauntlets help contain the swelling and allow me some flexibility of movement. They do not cure lymphedema.

Those of us who suffer daily with lymphedema rely heavily on our garments. Hopefully this bill will pass and we’ll see new changes in insurance company policies in the very near future.

You can read a PDF copy of the bill here.