As a patient-advocate for the Lymphedema Advocacy Group, I grabbed the rare opportunity to go to Washington, DC on Nov. 2-4, 2011 to lobby for a bill that would help older Americans with lymphedema get better insurance coverage. Anyone who has had lymph nodes removed or radiated (most cancer patients) is at risk of developing this chronic condition in which a limb, the face or the trunk is swollen.
What an experience! In just three short days we trod the hallowed halls of the House of Representatives and the Senate marveling at the rich history as much as the architecture of the buildings. Twenty-four of us, grouped into seven teams, met with various legislative aides who had never heard the word lymphedema.
But every one of them knew someone who had had cancer.
On Thursday night of that week, a star-studded staff briefing drew in a large crowd of aides from both the House and Senate. Renowned doctors lectured on various aspects of the condition, while patient-advocates moved the audience to tears with their stories of hardship and loss. We trust that legislators will be compelled by these and other appeals to co-sponsor legislation to make compression garments affordable to seniors.
All the staffers with whom I met loved my fashion LympheDIVA onyx sleeve adorned with a bejeweled pink ribbon. One aide representing the San Francisco Bay Area commented that she didn’t even notice I was wearing an arm garment. I found that remark curious because the sleeve was as black as coal and my other arm as white as a sun-bleached sand dollar. It made me realize that most people concentrate on their own issues and don’t go looking for abnormalities in other people. We who sport more obvious disabilities become needlessly self-conscious.
I wish everyone with cancer or lymphedema could experience this grassroots effort to lobby a legislative body. It all started with a young mother in North Carolina who was denied insurance coverage for her four-year-old son’s compression garments to control leg swelling. Singlehandedly, she became the catalyst for a law enacted in North Carolina to require private insurance companies to cover compression garments. The natural follow-up was to seek the introduction of a similar bill for Medicare at the federal level. Now that the legislation is pending in the U.S., we owe ourselves a satisfactory resolution to this preventable problem. What a dynamic role model this mother is for those who want to reduce undue suffering in our world!
On this Motivation Monday, think about how you can make a difference in your sphere of influence. You will be surprised at the results. People do listen.
Author, “Mourning Has Broken: Reflections on Surviving Cancer” and “The Pebble Path: Returning Home from a Forest of Shadows”