March is lymphedema awareness month, aiming to draw attention to this under recognized complication so many survivors are living with. The National Lymphedema Network (NLN) is also celebrating- 20 years of supporting people with lymphedema through guidance, education, research and advocacy. The NLN was founded in 1988 by Saskia R.J. Thiadens, RN, who opened the first lymphedema clinic in the United States in 1987 and has been a tireless advocate for the advancement of lymphedema therapy ever since. She founded the NLN in response to a lack of knowledge or understanding about lymphedema and related disorders by patients and healthcare professionals alike. The NLN is non-profit organization, comprised of healthcare providers, researchers, lymphedema patients and patient advocates dedicated to providing authoritative information on the prevention and treatment of primary and secondary lymphedema. OncoLink sat down with Saskia to talk about the past, present and future of lymphedema care.
: Thanks for talking with us, Saskia. I can imagine that there was little, if any, information and support available for people living with lymphedema in 1988 when the NLN began its mission. Has this changed? Are people getting the support they need?
Saskia: You are right, in 1988 there were no doctors and no other healthcare professionals able to diagnose, treat or refer patients with lymphedema (LE). My journey began with only a few patients, but soon I found myself advocating for the thousands of people suffering with this ignored disease. Now 20 years later, the NLN has joined forces with the oncological community, as well as other disciplines. LE now is identified as a legitimate disease in the United States. The most current and proper treatment is in place at University-based clinics, hospitals, rehab centers and free standing facilities: thousands of clinicians have become Certified Lymphedema Therapists; physicians have included the lymphatic system in their existing practice; research is in progress in academic institutions; and patients are actively advocating for their rights and convincing their state and federal representatives to get laws in place to support treatment and reimbursement.
: I would think that research and a better understanding of lymphedema have led to advances in treatment. What do you see as the major advances in the care of lymphedema over the last 20 years?
Saskia: I am delighted to tell you that there is marked increased interest in basic, clinical and genetic research in the United States as well as abroad, and it is comforting to see the number of articles published over the years in peer reviewed medical journals. Evidenced based research will strengthen the belief among physicians that Complete Decongestive Therapy is the standard treatment for effective and safe treatment for lymphedema. Numerous trials are now being conducted at Academic Institutions and patients are actively participating. As a result of more evidenced based research, we already are seeing more professionals becoming involved in the field of Lymphology. Our hope is that over the next 20 years we will see many multi-disciplinary lymphedema clinics throughout the country, universities promoting research, and see the number of certified lymphedema practitioners multiply.
: For cancer survivors, risk reduction for lymphedema is emphasized. How has the growing knowledge about lymphedema changed or improved the preventive recommendations we give survivors?
Saskia: Through ongoing persistent education and awareness we have seen marked improvement among the many cancer patients with LE or at risk for LE. The Lymphedema Alert Bracelet/Necklace, launched in 1998 has made an especially huge impact. Today thousands of cancer survivors are wearing the jewelry stating “No Blood pressure or needle in this arm ”. Patients often do not allow their doctors to take a blood pressure, they also stop the lab technician from drawing blood from the affected limb; the bracelet has a dual purpose. Also the NLN Position Papers on Risk Reduction Practices, Air Travel and Exercise are widely used in breast centers, hospitals, doctor’s offices ,lymphedema clinics and distributed among the many cancer support groups. Many patients call the NLN hotline requesting educational information before or after cancer surgery. In other words patients now are educated before, during and after cancer surgery and know what to look for, and where to go in case they develop the early signs of lymphedema.
: How have practical issues, like insurance coverage and access to qualified therapists, changed over the years? Are there still improvements to be made in these areas?
Saskia: Bob will respond to this question. I am sad to say that the reimbursement for treatment and garments have become increasingly difficult. In this political climate we continue to face insurance and legislative struggles, and subsequently many patients are not receiving the adequate care. We are fortunate to have a strong Lymphedema patient advocate “Bob” Weiss MS who has been very active in improving state and federal legislation relating to LE. Presently we are working to establish a Lymphedema and lymphatic disease research grants program and a comprehensive LE treatment and patient protection law in New York State. We also have been seeking congressional sponsors fro a comprehensive LE diagnosis and treatment cost saving bill for Medicare. Bob Weiss has helped dozens of individual’s patients to obtain insurance reimbursement for treatment and garments. We recommend contacting your local and state representatives in case you receive denials for treatment. As patient advocates you can make a difference
: What do you see as the most important goals for the NLN and lymphedema care over the next 20 years?
Saskia: There are several important goals, but it is imperative that our doctors are educated in order to diagnose and refer patients at the onset of early swelling. Too many patients are still told by their doctor “There is no effective treatment for your swollen limb”, “You just needto learn to live with it”. Secondly, I would like to see a law that all our patients’ sign an informed consent’ stating that they were informed about lymphedema prior to their cancer surgery. Thirdly, legislation and proper reimbursement need to be in place to ensure that every patient young and old with a swollen limb(s) will receive adequate treatment.
: What would you say is the “take home” message for people living with lymphedema?
Saskia: My message for all our patients’ young and old is “we can live a normal and productive life,” as long as we do our day to day self-care, and maintain the affected area.