• In running across sample letters for writing to the Governor for an awareness day, NLN has posted on their webpage the following sample letter for even just awareness within Congress.  Thought, if you are in the writing mood, you might want to follow this letter to your Senators and House Representatives to make them more aware about the Lymphedema condition.







    Honorable Senator/Congress Member (Name of your legislator)


    I am writing you about Lymphedema, a medical condition affecting an estimated 1.5 to 3 million Medicare Beneficiaries who are not receiving treatment from Medicare according to the current medical standard of care. But what is worse is that Medicare is spending billions of dollars every year treating a largely preventable lymphedema-related Cellulitis.


    I would like to request that you consider introducing a lymphedema diagnosis and treatment cost-saving bill to correct many of the deficiencies in Medicare coverage of lymphedema treatment. I can provide you with a proposed draft if you are interested in sponsoring this quality of care bill. There is no conflict with current Congressional efforts to pass a Medicare access bill since this is a quality of care bill. The bill also does not conflict with any CMS policies, but instead it removes ambiguities and clarifies coverage issues.


    Lymphedema is a condition caused by injury, trauma or congenital defects involving the lymph system. The primary function of the lymphatic system is to cleanse the body of toxins and defend against infection. Primary Lymphedema is congenital. Secondary Lymphedema can be caused by surgeries or radiation treatments and is a common side effect of cancer treatments that remove or damage lymph nodes resulting in the chronic swelling of a body area or part nearest the damaged portion of the lymph system commonly an arm or leg, but the chest, neck and trunk can also be affected.


    Lymphedema is incurable and progressive, and if left untreated, the swollen area can become fibrous and prone to serious, debilitating infections. Over time, untreated lymphedema results in disfigurement, disability and even death.


    The recognized standard of treatment of lymphedema is Complete Decongestive Therapy (CDT). CDT comprises four interacting protocols applied in two phases (acute and ongoing): manual lymph drainage (MLD); compression therapy; lymph drainage exercises; and skin care. [Refs: ACS 1998, ISL 2003, NLN 2006]. The initial intensive phase is performed by medical professionals, but ongoing care is patient self-provided using techniques taught the patient by the healthcare provider.


    Medicare does not cover lymphedema treatment materials or treatment by lymphedema- qualified professionals other than Physical Therapists and Occupational Therapists, nor does Medicare require that the provider of lymphedema treatment services be qualified in the specialized techniques. While Medicare does cover and pay for statutorily-limited therapy and sequential compression pumps, many patients suffer recurrent infections, progressive degradation in their condition and eventual disability because they cannot afford the compression bandages and garments required for their everyday self-care. 


    Denials of coverage for lymphedema compression bandage systems, compression garments and devices and supplies are based on inconsistent interpretations of Federal statutes and the Medicare publication system, and CMS has stated repeatedly that a change in the law will be necessary in order for them to change their policies to cover these medically necessary items. We would like to request that you pursue such a change.


    Please understand that this is NOT a new health mandate. The staff, equipment and facilities are already in place in most medical providers. Most providers already cover lymphedema treatment, and there are no exclusions in any medical policies that we are aware of. The Women’s Health and Cancer Rights Act of 1998 already mandates the treatment of lymphedema resulting from breast cancer treatment.


    It can be shown to result in medical savings which exceed ongoing costs by factors of 2-5. A lymphedema coverage mandate has been in effect in Virginia since 2004, and a similar law was passed in North Carolina this year, to become effective in 2010. Data from the first five years of operation in Virginia show claim costs of $1.12-2.82 per year per contract (0.04-0.09% of total claims) not accounting for the expected savings due to reduced cellulitis rates.


    I urge you to consider sponsoring the proposed “Lymphedema Diagnosis and Treatment Cost Saving Bill of 2010” which has the backing of the National Lymphedema Network. Contact me with any questions or with requests for further information, medical evidence, cost efficacy data or detailed legislative details.


    Your Constituent,


  • Jenny Sterner
    Jenny Sterner Congressman Chris Smith and a few others, I can't remember now.
    No response whatsoever, not even a form letter!
    January 23, 2010 - Report
  • Kathryn Krastin
    Kathryn Krastin Do you have a copy of the letter you wrote???
    January 24, 2010 - Report
  • Danielle Jarvis
    Danielle Jarvis I'll be persuing this for Idaho in the next month or so - I plan on a follow up visit to them in person. I'll let you know how it goes!
    February 10, 2010 - Report
  • Kathryn Krastin
    Kathryn Krastin Ohhhhh, please do, Danielle. Look forward to hearing more about your adventure with this. BTW, check out the events. I'll be doing a show on Real Life Radio Network dedicated on March 6th to the National Lymphedema Day as well.
    February 10, 2010 - Report