There are 3 to 5 million people in the U.S. living with lymphedema, most of whom are breast cancer survivors who were never told that lymphedema could develop after surgery. What’s worse is there is currently no cure for lymphedema, only treatment of symptoms. Part of that treatment includes medical compression wraps to treat the chronic swelling caused by a damaged lymphatic system.
Yet Medicare and most private insurances won’t pay for these essential supplies. So the Lymphedema Treatment Act was drafted to provide these victims of lymphedema with the necessary coverage. However, the recent government shutdown prevented the act from moving through Congress for approval. As of February 14, 2019, the act has been reintroduced in the Senate and is waiting to be reintroduced in Congress.
Getting this act passed will not only require Medicare to cover the garments/wraps that lymphedema patients need, but it would also raise awareness of the disease and its widespread effect on the many families impacted across the United States.
What Is Lymphedema?
When part of your lymph nodes are removed or damaged–most often as a result of cancer–lymphedema is a common result. For most breast cancer patients, effects start to become visible in the arms and/or hands. Early signs of lymphedema in these patients include:
- Progressive swelling in part or all of the limb
- Restricted range of motion or limited mobility of the limb
- Hardening and thickening of the skin
- Aching or discomfort
- Feelings of tightness or heaviness
Although there’s no cure for lymphedema, when caught early treatment can reduce some signs and symptoms, and stop them from getting worse. Treatment options may include:
- Light exercises to encourage liquid drainage
- Wrapping the arm or leg
- Massaging the area
- Pneumatic compression
- Compression clothes
The lack of a cure for this disease makes passing the Lymphedema Treatment Act all the more vital. Once it is passed, people suffering from lymphedema will at least have the means to treat their condition.
Recent Efforts Raising Lymphedema Awareness
Many people don’t know lymphedema is a possible side effect of breast cancer treatment. While estimates vary based upon the type of surgery performed, most sources estimate that patients have a lifetime risk of anywhere from 5-25%. The primary risk is in the first year following surgery and radiation therapy, when 90% of these cases occur.
Creating awareness is key to empowering patients to be vigilant and take swift action toward early intervention that can help minimize these risks. In addition to the Lymphedema Treatment Act, there are other recent efforts aimed at creating necessary awareness.
Of particular note was the 2nd Annual Lymphedema Symposium recently hosted in November 2018 by Harvard Medical School and BIDMC in Boston. The focus was on breast cancer related lymphedema and featured award-winning actress Kathy Bates as the keynote speaker, a cancer survivor and lymphedema patient herself.
How to Get Involved
World Lymphedema Day is March 6, 2019. This is a great opportunity to help create widespread awareness about lymphedema. You can help by asking the World Health Organization (WHO) to make lymphedema awareness and cures a 2019 global health challenge initiative. Sign the petition to show your support!
Closer to home, those suffering from or at risk for lymphedema need additional help. The U.S. federal government must relieve them of the financial burdens required to treat their disease. The more people who voice their opinions, the more likely the Lymphedema Treatment Act will get passed. Take a look at ways you can get involved, such as calling your senators and representatives, attending lobby days in D.C., and sharing your own story.
At Clear Choice Physical Therapy in Fort Lauderdale, we work closely with patients to provide all kinds of physical therapy options. We offer lymphedema treatment as well, educating and informing the community about this disease along the way, and our certified lymphedema therapist has completed the 135-hour specialized training course at the espoused Academy of Lymphatic Studies (ACOLS).
Please contact us to set up an appointment or to ask any questions regarding lymphedema, ways to treat it, or ways to get involved in supporting those who are affected by it.