Lymphedema Awareness Month

  • 10 March 2014

LE awareness

Because March is Lymphedema Awareness Month, as a patient-advocate I cherish the opportunity to educate readers on lymphedema and its relation to an important bill pending in Congress. Everybody around the world recognizes the pink ribbon for breast cancer awareness, but how many know what the turquoise ribbon represents?

Lymphedema is a chronic condition caused by the accumulation of lymph fluid that causes tissue swelling, most commonly in the arms and legs. It is estimated to afflict about 3 to 6 million Americans.

Lymphedema is often called “cancer treatment’s dirty little secret.” While individuals can be born with a primary form of lymphedema, the majority of cases are secondary in nature, most often caused by cancer treatments that damage the body’s lymph system or immune functions. For cancer patients, lymphedema is one of the most significant survivorship issues. Breast cancer, in particular, is one of the most common causes of lymphedema, with an estimated incidence rate of about 20%.

Fortunately, there is hope for lymphedema patients in that the risks and complications of this disease can be mitigated by Complete Decongestive Therapy (CDT), the gold standard for treating lymphedema. In addition to manual lymph drainage and decongestive exercises, an essential component of CDT is compression therapy. Unfortunately, Medicare beneficiaries currently lack coverage of the compression supplies needed for CDT to be completely effective. Lymphedema is progressive if left untreated and can put patients at greater risk for serious infection and disability.

As a breast cancer patient I deal with the daily challenges of managing lymphedema in my arm. In my case the swelling was caused by removal of lymph nodes to stage my cancer and by radiation under the arm as part of my treatment. Lymphedema therapists treated my lymphedema by CDT in 1997, and since that time my insurance companies have paid partially for my compression garments and bandages. But when I become a Medicare beneficiary, I will lose that coverage.

To help patients like me successfully treat lymphedema and manage their symptoms, it is important that Congress pass H.R. 3877, the Lymphedema Treatment Act. This legislation will provide Medicare coverage of doctor-prescribed compression supplies while also helping to reduce total Medicare spending, decreasing the incidence of costly complications and disabilities associated with the disease. Many Medicare patients cannot afford compression garments, and the resultant swelling brings on an unnecessary loss of functions in the activities of daily living.

And many insurance companies follow the example of Medicare: if Medicare does not provide coverage, they also deny it. Congressional approval of this Act will make such companies reconsider their present policy of not paying for compression garments and bandages.

To learn more about the Lymphedema Treatment Act and how you can get involved, please visit LymphedemaTreatmentAct.org. Passage of this Act would be the compassionate and right thing for Congress to do.

P.S. Thomas Hovatter is the late husband of a friend who serves with me and others on the Board of the Lymphedema Advocacy Group, a grassroots non-profit organization directed solely to passage of H.R. 3877. Thomas died due to complications of lymphedema. His wife has made lobbying for this bill her greatest passion.

Do you or does a friend of yours have lymphedema? If so, does the medical insurance company provide any coverage for compression supplies?

  • http://none karen sutherland

    dear Jan,

    thank you for this post, and for your service on the Board of the Lymphedema
    Advocacy Group. while I am not currently suffering with this awful condition, I realize that with being diagnosed with Stage IV metastatic breast cancer, I am still at risk if I should lose my NED status and require further treatment that could cause lymphedema. it is not right that patients not only have to suffer such serious damage, but that they are denied the necessary compression supplies needed to control the lymphedema. to know that one will suffer for the rest of their lives with this serious and many times life threatening malady and be denied coverage for the compression garment and supplies that can control advancement of their lymphedema is not acceptable. thanks for providing the link – I went to it, filled out the information needed (it was easy and quick to complete) so that my representative will receive my input.

    my deepest sympathy to Mrs. Hovatter on the tragic loss of her husband.

    much love and light,

    Karen xoxo

  • http://janhasak.com jhasak

    Karen, thank you ever so much for stopping by my blog and for going to the link and filling out the information. It really is very easy and takes little time. Representatives love to hear from their constituents, not from advocates who live in other districts or states. You never know if your online submission will make all the difference. I do hope you never get lymphedema, and doubly hope that you keep your NED status. You are so kind and compassionate, a faithful and encouraging reader of many blogs, and I appreciate all you do. XOX

  • http://www.womaninthehat.com eileen@womaninthehat.com

    Jan, I also deal with lymphedema after having 28 lymph nodes removed during breast cancer surgery. In fact, I was so surprised just yesterday that the tiniest, shallow scratch to the afflicted arm resulted in an infection. Thank you for bringing attention to this important issue.

  • Helen

    Thank you for helping to build awareness of Lymphedema … Helen

  • http://janhasak.com jhasak

    You are most welcome, Helen.

  • http://janhasak.com jhasak

    Eileen, I am so sorry you have to deal with this condition. My hope is that spreading awareness will result in less suffering and more enjoyment in life. Thanks for commenting. XOX

  • http://www.nancyspoint.com Nancy’s Point

    Hi Jan,

    Thanks so much for the advocacy work you have done and continue to do to raise awareness about lymphedema. Also, I’m still grateful that you wrote a guest post for me a couple of years ago. Our friend, Helen, has written one for Nancy’s Point this year. I’ll be sharing it next week. Again, many thanks. xxx

  • http://www.facingcancer.ca Catherine

    Good luck to you Jan. Up here in Canada it’s not covered by – at least the Ontario – health coverage. So, insurance will repay some of the cost, but if you don’t have that you foot the bill. At least it’s tax deductable as a medical expense, but still – this is expensive stuff.

  • http://janhasak.com jhasak

    Thanks for letting us know about the Ontario health coverage, Catherine. It’s also tax deductible here in the U.S., but that’s not much consolation to seniors on a limited budget who pay little, if any, taxes anyway.

  • http://janhasak.com jhasak

    I look forward to reading the guest post by Helen on lymphedema at your blog site, Nancy. It’s such an important issue. Thanks for stopping by my blog. XO

  • Henk

    Hello Jan,
    I was just diagnosed today with Lymphedema and spent most of the day reading about it.
    My foot started swelling up about 4 years ago and I never really had it thoroughly checked as it didn’t hurt.
    It got worse a few months ago and I decided to have it checked.
    I never had Cancer or treatment as such so I’m out in left field and wonder how I got it. They say it could be because of an injury and of course I had injuries on that leg in the past.
    So now it’s compression stockings and pump therapy. So it’s goodbye to the much loved shorts in summer.
    Any advise?

  • http://janhasak.com jhasak

    I’m sorry you were diagnosed with lymphedema. Do you go to a certified lymphedema therapist for your stockings and therapy? Make sure you get CDT, which is the gold standard of treatment for lymphedema, involving special massage, bandage compression and education about self-therapy, lasting from four to six weeks. You can check out reliable websites on lymphedema such as the National Lymphedema Network’s website. Please see my webpage with lymphedema resources at janhasak.com/resources. Take good care.

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