It would be quite fitting for President Biden to be the one to sign the Lymphedema Treatment Act into law, because he and Dr. Jill Biden are part of how this bill came to exist.
In the fall 2008 I was asked to speak at an event. They were looking for a citizen that had experienced difficulties with their health insurance coverage who was willing to share their personal story. My son Dylan, who was born with lymphedema, was not yet two years old, and I’d just spent the last year appealing our insurance company’s denial of his compression garments.
The headliners of the event would be then Vice Presidential candidate Joe Biden, and his wife Jill. It would be a crowd of thousands. I had never spoken in public before and the thought terrified me. But I also knew I’d be crazy to say no, and just to speak about lymphedema on a platform like that was an opportunity that should not to be passed up. So, I decided I had to face my fear of public speaking and said yes.
I was told I’d have an opportunity to meet the Biden’s before taking the stage, but that turned out to be an understatement. When I arrived I was taken to a private room to spend time alone with the Biden’s, who were so gracious, and so down to earth, I couldn’t help but quickly feel at ease around them.
They immediately asked about my story. I told them about my son, and how it was such a struggle to get him properly diagnosed and when we finally did I was so relieved and thought things would get easier, only to then learn that the life-long treatment supplies he would need were not covered by insurance. They also shared personal things with me, then gave me a hug and some words of encouragement.
As we waited for the crowd to disperse – we had been seated right beside the stage so I could join my husband and kids right after speaking – a gentleman approached me. We reached out his hand, gave me his business card and said, “I’m Larry Kissell. I’m running for Congress, and if I’m elected I’ll help your family.“
The rest, as they say, is history! Mr. Kissell went on to be elected. Once in office the following year I scheduled a meeting with now Congressman Kissell at his district office. I showed him the business card he gave me and said, “I hope you remember me, because I’m here to ask you to introduce a bill that will not only help my family, but also millions of Americans who have lymphedema.”
He did remember me and had every intention of keeping his campaign promise. Not only did my Congressman introduce the Lymphedema Treatment Act and lead the bill for two session of Congress, but after not being reelected he has remained involved, doing whatever he can to help get the bill passed, including co-authoring this op-ed and attending meetings with us on Capitol Hill during our Lymphedema Lobby Days.
We’ve come so far, and have every reason to be optimistic that we’ll be seeing President Biden sign the Lymphedema Treatment Act into law. But we all have to seize the moments life gives us to use our voices and advocate for what matters to us. This is how change happens. I could have never known how pivotal that one opportunity to share my story would be. Never underestimate the power of sharing your story as well!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
