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hear about lymphedema.
Howell says that for many years, she was the first person to even mention
the word “lymphedema” to a patient because many doctors didn’t want to scare patients into worrying about their arm swelling because of their surgery. Many patients would ask Howell why their doctor didn’t mention the disease, and Howell would respond by telling patients that doctors didn’t want to frighten them over something that might not happen.
“But if it does happen, it’s life changing,” says Howell. “So many women come to my store very upset because they’ve survived cancer and now they have a lifetime sentence of lymphedema, and that’s all in the way that you handle it in the fitting, too, and let them know that it’s not a death sentence, but it is something that they have to manage.”
Howell pointed out that she has many patients with primary lymphedema, which is not directly attributed to another medical condition. Once diagnosed with lymphedema and swelling, these patients must wear a garment for the rest of their life.
Tom Musone is director of marketing for Juzo, which develops compression garments for the HME industry. Whether its lymphedema, poor circulation, deep vein thrombosis, pregnancy, leg ulcers or edema, a customer may require a compression garment other than socks. Musone offered the following information about non-sock compression:
• Arm Sleeves — Lymphedema awareness is increasing, both in the medical world and for patients.
° More than 10 million to 15 million patients have lymphedema in the United States and there are more than 150 million lymphedema patients worldwide.
° The Lymphedema Educating and Research Network (LE&RN) is doing some great work in creating awareness (see sidebar).
° Reimbursement for non-hosiery products is still good, and have not received the cut back that hosiery products have received.
∆ The Women’s Health Act of 1999 requires insurances to pay for cancer- related products, such as breast prostheses, wigs and compression sleeves.
° LTA is working on passing a bill to have Medicare pay for compression supplies.
• Wraps — For wound care and compression treatment, wraps are the gold standard.
° Medicare pays for wraps and specialty wound care products.
° Higher working pressure helps with wound management.
° Medical professionals find it easier to use compression wraps than
bandages.
• Leggings
° Leggings are consumer-demand products that are in style and fash- ionable, and the leggings market has taken off, from Lululemon to wearable fashion leggings to Nike running leggings. The athliesure market is estimated by NPD Group to be $44 billion.
Making Compression Work
Howell shares the following tips for running a successful compression busi- ness, which involves carrying garments for both upper and lower extremities: • Compression is a repeat business. Patients need new garments regularly,
typically every six months. Some insurances pay, some don’t pay, but ready- to-wear regular compression sleeves can cost between $70 and $90. A custom sleeve can cost between $200 and $400. Patients need at least two, and they’re going to need them for the rest of their life. It’s like needing glasses, you can’t just wake up one morning and hope that you’re not going to need glasses anymore.
• Referral partners regarding compression patients include lymphedema therapists, nurse navigators, vascular doctors, general practitioners, cardiol- ogists and dermatologists. And the only way to capture these partners is to get into their offices to let them know who you are and the services you offer.
• I spend at least half an hour with every person who walks through the door for compression. And you can’t just hand somebody a box and say here you go, good luck. You’ve got to show them how to put it on, you’ve got to show them how to take it off, and you’ve got to educate them on how
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to wear it correctly. Also, you’ve got to teach them how to take care of it, why their doctor sent them to you, how it works, how their lymphatic system works, and how their vascular system works. You have to paint the picture for them because the doctor’s not spending half an hour doing that. He’s saying, ‘You have swelling. Here’s a prescription. Go get some compression socks, and go here because they’re really good.’
• Having the right compression inventory isn’t cheap. You need to have arm sleeves, gloves, gauntlets, sports socks, dress socks, everyday socks, sheer stockings, thigh highs, knee highs, maternity panty hose, and wraps. You need to have at least one of every size. We carry products from two major manufacturers and between the two of them, there are 50 sizes. n
Joseph Duffy is a freelance writer and marketing consultant, and a regular contributor to HME Business. He can be reached via e-mail at joe@prooferati.com.
Questions about Lymphedema?
William Repicci is the president and CEO of the Lymphatic Education and Research Network (LE&RN), which you can visit at lymphaticnet- work.org. The organization focuses on lymphatic education and advo- cacy and offers extensive information on lymphedema, lipedema and lymphatic or venous disease. Repicci talked about lymphedema and LE&RN with HME Business magazine:
HMEB: What is the mission of LE&RN?
Repicci: Stanford University estimates that up to 10 million Americans suffer from lymphedema. However, a large percentage of these patients have never been diagnosed as having lymphedema and, as a result, are not receiving treatment. Here, LE&RN’s goals intersect with those of the compression industry. We are both committed to reducing suffering, and suffering is only reduced if patients are aware of their disease and being treated. So, LE&RN makes great effort to educate the population at large about what lymphedema is. Once they are diagnosed, it leads them to the compression companies, which is a gold standard of treatment.
How important is lymphedema education?
There is one thing that LE&RN can do better than most companies in this industry: educate the public. The word ‘lymphedema’ is unknown to most. This is particularly curious considering that more Americans have this disease than MS, MD, AIDS,
Parkinson’s disease and ALS — combined. The takeaway here is that too often doctors are either not diagnosing the disease, or that when they do, they don’t use the name of the disease when describing it. Case in point is a doctor’s wife that I met who had had lymphedema since a child. Yet, she had only been told that she had ‘drainage issues.’ Now an adult, she had never heard the word ‘lymphedema.’ The problem here is that all the information that companies put out about lymphedema is only likely to reach those that have heard of the disease.
However, when LE&RN has its spokes-
person Academy Award-winning actress
Kathy Bates on CBS Sunday Morning getting
therapy, over six million viewers get intro-
duced to lymphedema. This is compounded
by LE&RN’s relentless campaign to educate
the masses about the word. We also have a campaign to advocate for the use of the acronym LE for lymphedema. We need to make it easier for the public at large, and loved ones of people with this disease. Every disease not named for the person who discovered it has an acronym. Only 30,000 Americans have ALS, but most know the acronym. ... We also established World Lymphedema Day on March 6.
William Repicci is the president and CEO of the Lymphatic Education and Research Network (LE&RN) has partnered up with celeb- rity spokeperson Kathy Bates to help spread the word about the disease and help fight its under diagnosis.
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