The Voices of Lymphedema Advocacy
Author: Holly Cline, Freelance Writer
September 2017
How a small group is leading the charge to pass the Lymphedema Treatment Act

Heather Ferguson, founder and executive director of the Lymphedema Advocacy Group (LAG), is a terrific example of how one person really can make a difference. She learned of the deficiencies in insurance coverage for compression garments after one of her twin sons was born with primary lymphedema in September 2006.

Medicare and many other policies do not cover compression garments for lymphedema treatment. Many patients suffer from recurrent infections, progressive degradation in their condition and eventual disability because they cannot afford compression products to maintain their condition.

“I spent the better part of Dylan’s first two years of life appealing denials. I decided that I would rather work to fix the problem once and for all for everyone, than just continually fighting for coverage for Dylan,” Heather said.

In 2009, Heather began working with her state representative, and in four months succeeded in passing the North Carolina Lymphedema Diagnosis and Treatment Act, requiring all private and state policies issued in North Carolina provide coverage for comprehensive lymphedema treatment, including compression supplies. Heather then turned her efforts to improving coverage nationwide and secured a Congressional sponsor for the Lymphedema Treatment Act (LTA) - a federal bill aimed to improve insurance coverage for the medically necessary, doctor-prescribed compression supplies.

In 2010, Ferguson founded the Lymphedema Advocacy Group (LAG), a non-profit organization of volunteer patients, caregivers, healthcare professionals and industry partners, working together to increase awareness of and education about lymphedema among lawmakers, insurance providers and other relevant entities. Their primary goal is to gain the majority of co-sponsors in the House and Senate to help pass the bill. The group lobbies in Washington D.C. and has a variety of resources that help raise awareness of lymphedema and the importance of passing the LTA.

“The first time I went to D.C., in 2010, there were just 12 of us and only one had ever met with a congressional office. We were nervous and wondered if they’d even take us seriously,” Heather said. “It has turned out that what we thought was our greatest weakness has been our greatest asset. Time and again offices tell us how nice it is to meet with normal people – not lobbyists – about an issue that affects them personally.”

A True Team Approach to Advocacy
Juzo sponsors LAG, providing funding to support the cause and educational materials to dealers and therapists to increase awareness for the LTA. Tom Musone, Juzo Marketing Director, in a LAG board member and serves as co-chair for the Advocacy Training Committee and state team leader for Ohio.

“LAG is one of the most professional grassroots organizations that I’ve been part of, and it’s inspiring to watch the advocates so passionately explain the need for Medicare insurance coverage,” Tom said. “They are the true spirit of the power of ‘the voice.’ Their unity and teamwork is a great strength and a direct result of their accomplishments. I’ve learned a lot about myself through my work with LAG and have been inspired to see how believing and being positive can create change.”

Heather is grateful for the support from the industry and others.

“We couldn’t do what we do, at least not on this scale and this effectively, without our industry partners like Juzo,” she said. “We are an all-volunteer group, so our board is literally our work force. I’m very proud to have Juzo and other manufacturers serving on board, along with patients, caregivers and clinicians. It ensures that all aspects of the lymphedema community are represented and joining forces to get this coverage gap closed.”

Sarah Bramblette is the board secretary and also serves as the LAG vice-chair and legislative chair. She joined the LTA Ohio State Advocacy Team in early 2014. Living with lymphedema for more than a decade, she learned to navigate the insurance approval process and advocate for herself in order to secure insurance coverage for her lymphedema garments and compression treatment. Now on Medicare, she is directly impacted by the lack of coverage. Through LAG, she combines her personal story and knowledge of policy and law to power her advocacy efforts.

“The experience has been empowering and motivating, knowing that I can help create change that will affect millions of Americans. I have long been interested in government, so being a part of the process, while sometimes frustrating, is some of the best hands-on learning,” Sarah said.

She considers persistence as the key to progress.

“I often compare advocacy to living with lymphedema. We can’t get one session of MLD and be done. It takes weeks of sessions and self-care to treat our lymphedema. We can’t just send one e-mail to Congress, we have to be the squeaky wheel and keep the LTA on their radar,” she said. “Our bill has bipartisan support in Congress, which shows the power of everyday people to work together with Congress to get things done. Our voices are being heard.”

As of September, during the 115th Congress, the LTA has 277 cosponsors on the House, which is a majority, and 34 in the Senate (60 members is the majority). When the bill was first introduced in the 111th Congress, it only had 58 House cosponsors – so it’s evident the LGA efforts are paying off.

ylan remains Heather’s primary motivation to keep pressing forward, but the relationships she’s formed throughout this process encourage her, as well.

“My son’s life is at stake, and I can’t let him inherit this problem. Those were my initial motivators and are always an underlying factor, but I also get daily reminders of just how many people are suffering needlessly and who will be helped by this coverage,” she said.

Want to help?
The tools available at lymphedematreatmentact.org make it easy to contact members of Congress who are not yet cosponsoring the LTA. You can call, email, contact via social media or attend district meetings to solicit support. Also, there are LTA advocacy teams in each state – membership is free and encouraged.

“The most wonderful and rewarding part of this whole journey is that I’ve realized it’s not just about the goal. It’s also about all the men, women and children who've been empowered by the process,” Heather said. “They are the reason we will get this done. We aren’t just passing a bill. We are building a community full of people who’ve been silent for too long, helping them find their voice and connect with one another.”

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2 Comments

Janet Weller COF/CMF Preferred O&P Svs commented on Oct 18, 2017
Medicare doesnt pay fair on the mastectomy bras as well, Why is a Breast Cancer survivor less than a amputee I work in a prosthetic and orthotic office in Washington state, My patients are suffering as we cant afford to lose our bums on the bras I am going to be forced to close my mastectomy buisness due to no reimbursement on bras. I would go in front of the Medicare board and ask "What if this was your daughter mother wife, This is discrimination, and so unfair, I have been a Mastectomy Fitter for over 25 years, and I am sad to think that the congress senate care less... about these men and women.

JuzoUSA replied on Oct 20, 2017
@Janet Weller: Thank you for your comments.

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