This article was written by Heather Ferguson, the Founder and Executive Director of the Lymphedema Advocacy Group. Heather’s relationship with lymphedema began with the birth of her twin boys, Devdan and Dylan, in September of 2006. Dylan was born with primary lymphedema. Her desire to advocate on behalf of lymphedema patients took root when she learned of the deficiencies in insurance coverage for the medically necessary compression garments used daily in lymphedema treatment. Although a newcomer to the field of lymphedema, her background as a professional ballet dancer, teacher and choreographer provided pertinent expertise and accomplishments in goal-setting and personal and professional discipline, which have contributed to her remarkable success as a leader in lymphedema advocacy in the area of health policy. Heather is a recipient of the Lymphatic Education and Research Network’s Wendy Chaite Leadership Award, the National Lymphedema Network’s Legislative Excellence Award, and a graduate of the Lymph Science Advocacy Program.
Beginning in 2009, Heather began working with her State Representative, and, in an unprecedented four months time, succeeding in passing the North Carolina Lymphedema Diagnosis and Treatment Act
. This state mandate requires that all private and state policies issued in the state of North Carolina provide coverage for comprehensive lymphedema treatment, including compression supplies. Heather then turned her efforts to improving coverage nationwide, and in late 2009 secured her Congressman as the sponsor for the first-ever federal Lymphedema Treatment Act. With the introduction of this federal legislation, it became apparent that an organization dedicated to improving insurance coverage for the treatment of lymphedema was needed.
In 2010 she founded the Lymphedema Advocacy Group (LAG) in order to raise the awareness and support that would be necessary to move a bill through Congress.
Thank you Heather!
The Lymphedema Treatment Act
is a federal bill that will improve insurance coverage for the compression garments and supplies used in the treatment and management of lymphedema. While the bill is specific to Medicare coverage, it will benefit all patients, because other policies, both private and public, follow the standards set by Medicare.
We are at a pivotal moment in our quest to gain coverage for these supplies, and this is a call to action for all members of the lymphedema community. With 340 cosponsors as of this writing, the Lymphedema Treatment Act is now one of the most supported bills in Congress! But incredible as this is, no amount of cosponsors guarantees passage, so it is up to all of us to get engaged, and stay engaged, until we cross the finish line.
There are many quick, simple, and effective ways you can make a difference – all completely free – that are outlined in the last section of this article. Isn’t coverage for your garments and supplies worth a few minutes of your time? I know the answer is yes, so it’s time to make your voice heard until all lymphedema patients have the insurance coverage for their compression supplies that they need and deserve!
My interest in closing this coverage gap stems from personal experience. I have twin boys, Devdan and Dylan, who are eleven-years-old. Despite having no family history, Dylan was born with primary lymphedema. After a somewhat lengthy and frustrating experience getting a proper diagnosis, we thought the hardest part was behind us. Finding out that the medical supplies Dylan would need for the rest of his life were not covered by insurance was unfathomable.
After going through a nine month appeals process when he was one-year-old, I knew I wanted to make sure my son never had to face that frustration, or worse yet, possibly have to go without treatment if he did not win his appeals and could not afford to pay out of pocket. But the larger issue was that he should not even have to be in that situation.
It’s hard enough to born with a chronic condition; you shouldn’t have to fight for coverage of your doctor prescribed medical supplies on top of that. So I made up my mind that while I couldn’t cure Dylan, I could make having lymphedema easier for him to live with by fixing the insurance problems.
I first worked with my State Representative to pass a North Carolina law in 2009 that requires all private policies based in our state to cover these supplies. I then quickly turned to getting to the root of the problem, which is the lack of Medicare coverage for these supplies. As previously stated, since Medicare sets the minimum standard for all other policies, closing that coverage gap will help all patients, of any age, in any state, regardless of what kind of insurance they have.
In late 2009, I met with my then Representative, Larry Kissell, and within about two weeks he decided that he would introduce federal legislation to address this problem. The first iteration of the bill was introduced in the House of Representatives in 2010. Representative Kissell also reintroduced the bill in the following Congress, after which he was not reelected.
We needed a new bill sponsor, and by this time we were much more savvy. We now knew that the ideal sponsor sits on one of the committees of jurisdiction, meaning a committee that has the power to hold a hearing on the bill and decide if it moves forward or not. Enter Dave Reichert.
Representative Reichert has sponsored our bill in the House for the past two and current Congresses. He recently announced that he will not run for reelection, so he is as intent as we are on getting this bill passed before the end of this Congress, which runs through December of 2018.
Every piece of legislation also needs a companion bill in the other chamber. Our bill did not have a Senate companion until the last Congress, which introduced in late 2015. Our first and current Senate sponsor is Maria Cantwell.
Rounding out our congressional champions are co-leads Senator Grassley, and in the House, Representatives Blumenauer, Lance, and Schakowsky. Together with our lead sponsors, they compromise a Democrat and Republic from every committee that has jurisdiction over our bill. I call them our “dream team” because this is the most favorable scenario a bill can have.
To put in to context how incredible the amount of support we currently enjoy is, realize that thousands of bills are introduced in every Congress. Most will never have more than a handful of cosponsors. Making it to 100 in the House or 25 in the Senate is considered noteworthy.
Cosponsors do not carry over from one Congress to the next, but when a member is reelected and has cosponsored a bill in the past, he or she is likely to do so again. In this way you can build on past support in successive Congresses, which is exactly what we have done: 111th
Congress – 58 House cosponsors; 112th
Congress – 92 House cosponsors; 113th
Congress – 107 House cosponsors; 114th
Congress – 261 House and 29 Senate cosponsors.
As of this writing, in the 115th
Congress, the Lymphedema Treatment Act has 293 House and 47 Senate cosponsors. To see if any of your members of Congress are among them, you can view the cosponsor lists here: Senate
With this kind of momentum and bipartisan support we are moving closer and closer to passage. A small bill like ours, however, is never sent to the floor as a stand-alone measure. It will be tacked on to a larger bill, or included in a package or bundle of bills, presumable that are also Medicare-related, but not necessarily.
Therefore, we are dependent upon a legislative “vehicle” on which our bill can hitch a ride. When such an opportunity will come along is out of our control, but what is in our control is influencing the chances of our bill being chosen when this kind of opportunity does arise.
We can do this in two ways: 1.) By continuing to increase our number of cosponsors, and 2.) By reaching out to members of Congress who are in leadership positions and urging them to pass our bill.
How You Can Help Get This Bill passed
There are a variety of advocacy tools at LymphedemaTreatmentAct.org
.The following is a list of actions you can take that are quick and easy, but also very effective.
For those who want to go beyond the basic steps above, here are other ways to get involved and have an even greater impact.
Additional resources and ways you can make a difference are on our website at LymphedemaTreatmentAct.org
. Look for the “How You Can Help” menu along the left. The actions of one person do make a difference and we need you!
This is a grassroots movement. The Lymphedema Advocacy Group is an all-volunteer organization comprised of patients, caregivers, clinicians, and industry members. Our 20-member board and 1,000-plus state team members are people just like you and me. We all have a personal connection and feel very passionately about this issue.
Think about the anger and frustration you feel every time your garments, or your patients’ garments, aren’t covered by insurance. Now turn those feelings in to action! We can change this. We can pass this bill and close this coverage gap, but we all have to stand up and speak out to make it happen.
So take action today – it only takes a few minutes! And if you have any questions, please don’t hesitate to contact me. Thank you for your support of the Lymphedema Treatment Act!
Founder & Executive Director
Lymphedema Advocacy Group