Lymphedema, an incurable chronic illness that involves severe swelling of the limbs, is frequently ignored, often misdiagnosed and under treated. Now a study by a Stanford researcher, who has for years worked to change this, illustrates how the use of home health-care treatment can help. The research appears today in PLOS ONE.
In a story I wrote on the study, Stanley Rockson, MD, a leading expert on lymph disorders, explains that one of the major challenges to improving care for lymphedema patients is that home care is poorly reimbursed by third-party payers. Rockson and colleagues set out to examine the cost effects of the use of one of these home-care therapeutics called a compression device to reduce swelling.
This is clearly a compelling argument for increased coverage of compression devices and similar home-care devices to reduce costs
By examining the health-care claims from a national private health insurer from 2007 to 2013, researchers found that patients who used these compression devices reduced annual health-care costs from $62,190 to $50,000. As Rockson explains in a press release, "Total health-care costs for these patients are very high, but can be profoundly reduced with treatment intervention, in this case a compression device. This is clearly a compelling argument for increased coverage of similar home-care devices to reduce costs."
Rockson, who both researches lymphedema and treats patients with the disorder, has worked over the years to educate both the public and health-care professionals about this “hidden” disease. As a reporter who covers his research, he has also helped educate me - and in my piece I describe both the cause of the disease and available treatments:
Lymphedema is most commonly caused by the removal of or damage to lymph nodes as a part of cancer treatment. It results from a blockage in the lymphatic system, which is part of the immune system. The blockage prevents lymph fluid from draining well, and the fluid buildup leads to swelling, which can be painful and debilitating. These symptoms can be controlled with various treatments, including treatments done at home and outpatient physical therapy. Home treatments for lymphedema include manual lymphatic massage, multilayer bandaging techniques and application of various compressive garments to reduce tissue fluid.
I’ve written several other stories about Rockson’s work on lymphedema over the years. One such piece, published in 2009, helps bring a greater understanding to the disease by describing how it impacted one patient. Hearing firsthand from a patient about what it’s actually like to live with lymphedema day-in and day-out makes the ongoing search for better treatments and possible cures all the more pressing:
Julie Karbo fights a battle every day to keep her lymphedema under control. Every night she hooks her arm up to a portable pump to help drain away fluids. Every day she wears compression sleeves to keep the swelling down. She limits the number of groceries she carries into the house to make sure she doesn't put undue strain on the affected arm, and keeps a close watch for any possible infection-causing scratches or spider bites.
"A bee sting or a spider bite can lead to a very serious infection," says Karbo, 49, a high-tech public relations executive and single mother of two in the Bay Area, who—unlike many lymphedema patients—never had cancer. "It's something that greatly impacts the way you live your life."