March 6 is World Lymphedema Awareness Day. In fact, the whole month of March is Lymphedema Awareness Month. If you are a breast cancer survivor, your health care providers should have already made you aware of lymphedema. Breast cancer surgery and radiation can injure the lymph nodes under the arm and make it harder for your body to circulate lymph fluid. When this happens, fluid can build up in the arm and cause swelling.
According to the Lymphatic Education and Research Network, up to ten million people have lymphedema and related diseases. Lymphedema affects not only breast cancer patients, but anyone who has had surgery or radiation in an area rich in lymph nodes. A friend of mine who is a cervical cancer survivor has extensive lymphedema in her legs. Other people are born with the condition, and some people develop it for no apparent reason.
The condition can be painful and permanently disabling. Breast cancer survivors need to be aware that lymphedema can occur years after treatment.
Lymphedema treatment usually involves working with a therapist who uses a special massage technique to move the lymph fluid out of the arm. Then a system of bandaging prevents the fluid from building up again. In most cases, patients wear a compression sleeve even after treatment for maintenance. Wearing a sleeve is especially important while exercising or flying.
Treatment can be expensive.
Although insurance usually covers some of the expenses involved in treating lymphedema, many patients find it hard to pay for the bandages and compression garments they need to keep their swelling under control.
Currently Medicare does not cover these costs, and many insurers take their lead from Medicare when deciding what to cover. Now lymphedema advocates are trying to get Congress to cover this loophole with the Lymphedema Treatment Act. The act would require that the supplies necessary for treatment be covered under Medicare, and supporters hope that Medicare coverage would encourage other insurers to follow suit.
During the many years that I have been managing lymphedema, I have learned just how expensive supplies can be. Fortunately, my insurance has sometimes partially covered this expense. But for many cancer patients, already struggling with medical bills, the cost of bandages or a new sleeve is one expense too many.
Treatment reduces complications, hospitalizations, and disability.
Although some people might think that adding a new benefit is a cost that the government should avoid, that approach is short sighted. When lymphedema isn’t properly treated, infections can result leading to hospitalizations. Permanent swelling leads to disability claims when people cannot do work involving their hands and arms. Taking care of lymphedema patients is not only the right thing to do, it also saves money in the long run.
The Lymphedema Treatment Act, HR 1608/S2373, was first brought up in Congress in 2010. Some states have passed similar legislation for their citizens, but most Americans still need help. Because lymphedema remains a somewhat hidden illness, despite that fact that millions live with it daily, it is probably not a high priority for your congress member and senators. You can let them know what you think about this bipartisan bill with an email or phone call. Share your story about how lymphedema has affected you. Make people truly aware of lymphedema this March.
For Further Reading:
About the Bill. Lymphedema Treatment Act. Accessed from https://lymphedematreatmentact.org/about-the-bill/background-information/ March 2, 2016.
Lymphatic Education and Research Network. Accessed from https://lymphaticnetwork.org March 2, 2016.
National Lymphedema Network. Accessed from https://www.lymphnet.org March 2, 2016
Lymphedema for Health Professionals. July 17, 2015. National Cancer Institute. Accessed from https://www.cancer.gov/about-cancer/treatment/side-effects/lymphedema/lymphedema-hp-pdq March 2, 2015.
Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.