The founder of the Lymphedema Advocacy Group discusses her quest to make critical medical supplies readily available.
When Heather Ferguson’s three-month-old son Dylan was diagnosed with lymphedema, she never imagined she’d be fighting two battles.
“On one hand, it was devastating to learn he had an incurable disease, but on the other, it was also a relief to finally know what was causing his symptoms,” explained the Charlotte, NC mother-turned-advocate.
“My relief was short-lived, however, because not long after, I would learn the treatment supplies he’d need for the rest of his life were commonly not covered by insurance.”
The importance of treatment
Dylan had been struggling with pitting edema in his entire lower body. Although there’s no cure for primary/congenital lymphedema, which affects one in 100,000 individuals, the condition can be managed. The most important component of treatment is the use of compression garments.
“Most people think of swelling as a nuisance, but not something that serious. Lymphedema swelling is chronic, and without treatment, progressive,” explained Ferguson. “The affected body part or parts can become so large and swollen that patients might experience such things as skin breaking open and leaking lymph fluid, loss of mobility or function and disability.”
Refusing to accept the status quo
When Dylan’s compression garments were denied the first time, his mother assumed it was a mistake. “When I learned it was a widespread problem, I was angry. Not only did we have a child with an incurable disease, we were also going to have to fight for his access to care and have the lifelong worry about what would happen if he couldn’t obtain treatment.”
“I couldn’t change that Dylan had lymphedema,” remembered Ferguson, “but I could make it easier for him to live with it by making sure he had insurance coverage for his compression garments. And thus began my advocacy journey.”
Depending on the severity of the condition, compression garments can cost anywhere from several hundred to several thousand dollars each year.
“Unfortunately, decisions made by profit-based healthcare systems are often penny-wise, pound-foolish, and this is a classic example,” said Ferguson. “It costs far more to treat the complications of lymphedema than to cover the compression treatment supplies that could have prevented those complications.”
Ferguson is adamant: “More importantly, lymphedema patients deserve the opportunity to lead full and productive lives. This coverage gap was just so fundamentally wrong, I knew I had to do anything in my power to correct it.”
Taking a stand
Ferguson reached out to her local representative after Dylan’s crucial medical supplies were not approved.
“I was repeatedly getting form letter rejections, and I was frustrated. After a nine-month fight that included multiple appeals and intervention from my state representative, they agreed to cover my son’s treatment for one year, even though this was a chronic condition. After that, my mind was made up.”
A bill was introduced requiring health insurers to provide coverage for the diagnosis and treatment of lymphedema. Four months later, the state bill was signed into law.
“I immediately turned to fixing the problem on a national level, and reached out to my congressman, who thankfully was every bit as receptive. He introduced the first version of the Lymphedema Treatment Act into Congress on February 23, 2010. Twelve years and 10 months later, to the day, the bill became law.”
While Dylan, a thriving high school junior, is focused on robotics, college, and career choices, his mother is making sure patients not involved with passage of the Lymphedema Treatment Act are aware of the upcoming changes. Her work is far from over.
“When I started my advocacy journey, I had zero experience and zero connections. We aren’t wealthy, and I didn’t have a career that was one you’d expect to lend itself to this sort of thing,” said Ferguson. “I hope this encourages other individuals to know that they too, no matter their circumstances, have the power to make a difference.”
