I hope you will enjoy reading the Advocate Spotlight below, in which Jane DeChambeau, one of our long-time team members, talks about her lymphedema journey, why she got involved, and what advice she has for other advocates.
We also hope that reading her story inspires you to share yours, if you haven’t yet. Stories from patients, family members, friends, caregivers, and clinicians are so valuable in helping Congress to understand why passage of the Lymphedema Treatment Act is critically important.
Have a safe and happy Labor Day weekend and thank you for your advocacy!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
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LTA ADVOCATE SPOTLIGHT:
Interview with Jane DeChambeau from Idaho,
Team Member since 2014.
Meet LTA Advocate Jane DeChambeau, age 67. Jane was raised in Idaho and is very settled in Boise as a fourth-generation Idahoan. She is retired after a career working in public relations with local organizations.
In 2003, she was diagnosed with uterine cancer. She never really got over her surgery and in 2007 was diagnosed with bi-lateral lower extremity lymphedema on both sides. With a strong support team around her, she was able to continue working part-time while still enjoy skiing and traveling with her very active husband, daughter, family, and friends.
In 2014, her first bout of cellulitis led to her retirement 11 years sooner than expected. Suddenly ending her working opportunities was devastating for her. Again, with the strong support around her, she learned new ways to manage her lymphedema so she could remain engaged with her family, friends, and community. Today, like most retirees, she does not know how she had time to work!
During this same time, Jane got involved with the LTA thanks to a phone call from an LTA legend. In the spring of 2014, Elaine Eigeman, past Board Chair of the Lymphedema Advocacy Group, started reaching out with phone calls and emails to many people in Idaho with lymphedema, including Jane.
“Through her coaching, I learned how to talk about the important aspects of the Act and that allowed me to talk more comfortably about my compression garments and my legs,” Jane explained. “I became confident enough to do a joint call with Elaine and the staff from the two Idaho Senate Offices.”
Since those first calls, Jane has stayed involved with the LTA. She is very confident explaining her symptoms to Facebook friends, new acquaintances, and even people at airports wondering why her legs are padded. During every conversation she makes sure she asks, “Did you know Medicare does not cover these compression garments?”
“Today, I can explain that I have Lymphedema in both legs, and I can pay for my compression garments every six months or I can swell up and end up in the Emergency Room,” Jane said. “All the phone calls I’ve made helped me get to this point with ease. Working on the LTA has given me even more confidence as an individual.”
Jane was thrilled when the Avelare cost study came out because then she was able to say to her Congressional delegation, “I have been contacting your office for years. You asked for evidence that this would save money and now a report shows that it does.”
“I’ve always felt that the LTA is simply addressing a silly clerical error in the Medicare code. I don’t like unfairness in any form–if there were a pill for Lymphedema, it would be covered by Medicare. This unfairness is wasting taxpayer money.”
Jane loves learning about the legislative process, and she enjoys meeting the staff that makes the Congressional offices run. Traveling to Washington DC for our Lobby Days (pre-Covid) and meeting the staff has been very rewarding–and Jane says, “I am surprised to see how complicated passing a commonsense piece of legislation is.”
It’s challenging to find the enthusiasm to ask offices for the same things again and again. Jane says, “I struggle with that, and I think we all do. It’s also not fun to reach out to an office and be rejected. But then I remembered that this work is about teaching the office about the LTA. Even if I don’t get the response I want, it all matters and it all adds up. It’s generally not immediate gratification and that’s what makes the eventual conversions something to savor.”
Jane didn’t realize initially that our bill could be rolled into other legislation to become part of a bigger package. Now that the LTA has moved out of the E&C committee, Jane is very hopeful we will pass it this year. She’s also very pleased that her Rep. Mike Simpson is a co-sponsor–he is the only co-sponsor from Idaho. Jane explains, “I’ve been to his offices in DC and Boise, and I appreciate working with his staff.”
Patience is a virtue!
Over the years, Jane has learned not to put a time stamp on our federal legislative process. She notes, “it’s generally a long-term step-by-step process. It takes time, and constant, clear communication about the costs and benefits of the legislation. Commonsense does not play a major role in the process. It takes all of us linking our arms to get this done. So, we must not lose hope. Take each step slowly, send your emails, and make your calls. Remember there are no failures. Try not to have an expectation beyond that so you don’t burn out. If you do feel you are burning out, talk to someone on the team and we will help you. You are a constituent, and you care enough to try and fix this. That’s what’s important. Encourage others to be involved. We can all learn from each other. I’m constantly inspired by our leader Heather, my State leader Bill, and all the advocates. All our LTA successes are shared!”
