The Lymphedema Treatment Act is on the line for the grassroots organization that would like to see all sufferers have adequate treatment for their chronic condition. Currently, Medicare only allows one visit to a lymphedema specialist. Considering lymphedema is a long-lasting medical condition, it hardly helps those who suffer from the disease to get better, or even to identify the condition in the first place.
Sue Enerson, a lymphedema specialist and occupational therapist at Flagstaff Medical Center in Flagstaff, Arizona, said, “Many of my patients are covered by Medicare, and are allowed only one visit after a lymphedema diagnosis. This is not going to benefit the average patient, who is unable to wrap themselves or have adequate knowledge of their condition.” Besides that limitation, compression garments, which are necessary to manage lymphedema are costly and are not covered by Medicare nor by many private insurance plans who take their cues from Medicare.
Lymphedema results in swelling of the body part or parts,when the lymphatic vessels or lymph nodes are damaged, inadequate, or nonfunctional. There are many causes, including heredity, but the most common is cancer treatment, when lymph nodes are extracted from the body to prevent spread of cancer.
That’s when the Lymphedema Treatment Act started and that is what is on the line.
The founder of the Lymphedema Treatment Act is Heather Ferguson, whose son, Dylan, was born with primary lymphedema. The proper name is idiopathic congenital primary bilateral lower body lymphedema. After Dylan was born, he had a little swelling that was observed by the delivering doctor and considered not uncommon. At two months, however, Dylan had edema in his entire lower body. At three months, Dylan was hospitalized for three days. At 4 months, Dylan was able to see a lymphedema specialist, and the family adhered to all treatment protocols.
When Ferguson received the bills for Dylan’s compression garments and was told insurance would not cover these necessary medical products, she was both frustrated and angry. In 2009, she took her concerns to State Representative Tricia Cotham, who then began the legislative process in North Carolina, where Ferguson, her husband Brian and their children Devdan and Dylan reside.
The bill to grant medical coverage for lymphedema sufferers was passed by the North Carolina legislature and went into effect on January 1, 2010. During a rally for Joe Biden in North Carolina in 2008, Congressman Larry Kissel made a promise to Ferguson that he would introduce a bill in the House of Representatives. Kissel did introduce a bill and since that time it has not built up the support necessary to continue through to the Senate. Ferguson did not want to stop with North Carolina, although she and her family now benefited from coverage. She wanted all states to adopt this bill and get the fair insurance coverage for all.
This Friday, the bill will be reintroduced in the House of Representatives. Ferguson is hopeful that this time, with all the focus on health issues, it will pass and go on to become a federal milestone for all Americans who suffer from lymphedema.
“As a mom, it’s heart-wrenching when a child is born with a condition such as lymphedema, and then on top of that you have to struggle with the cost and the medical bills,” Ferguson recounted. She also brought up the fact that medical conditions can develop when lymphedema is not managed by therapy and compression garments, a far more costly byproduct of not being able to afford consistent treatment.
The Lympedema Treatment Act has a small budget. They are mostly supported financially by the producers of medical compression bandages and garments. There are very few individual donations, and Ferguson is hesitant to put that responsibility solely on private citizens during difficult economic times.
“There are far more lymphedema sufferers than you would be made aware of, and it’s important that we address all those who desperately need treatment coverage.” Ferguson is hoping that more ordinary citizens who are seeking help with lymphedema will band together. It is her intention to begin a network of people across all regions who will develop teams to give support and help to those families dealing with the chronic disease.
The Lymphedema Treatment Act is on the line. They offer education and information via their website. CJ Judge and Christine Wunderlin, out of Las Vegas, NV also work with the organization to offer both live and recorded podcasts discussing the issues and challenges of lymphedema.
By Lisa M Pickering
Interview with: Sue Enerson, Flagstaff Medical Center
Interview with: Heather Ferguson, North Carolina
Lymphedema Treatment Act Organization