Learning first-hand the power of coming together to get things done, as Lyme patients and advocates joined together in Washington, D.C. to lobby for Lyme disease research and awareness
by Sara Tyghter, Director of Education and Outreach, GLA (pictured with HHS Deputy Secretary Eric Hargan)
As I traveled to the Center for Lyme Action’s (CLA) first Washington, D.C. “Fly In” last month, I wasn’t sure what to expect. I knew CLA, a new advocacy group focused on lobbying at the federal level, had organized a two-day program (Feb. 11-12) and that Lyme advocates would be converging on the nation’s capital to make their voices heard. But I had never done any lobbying before.
Any feelings of apprehension quickly disappeared as I joined with 60 advocates from across the country who were in D.C. to tell their Congressional representatives why federal funding to grow Lyme and other tick-borne disease programs is urgently needed. More specifically, we wanted to ensure that they maintain their strong commitment to the Kay Hagan Tick Act. Signed into law in December 2019, the Tick Act represents critical federal support for researchers as well as millions of people suffering from Lyme disease; it still requires funding ($150 million over five years) and there is no guarantee these monies will be appropriated.
It was rewarding meeting with those representing other Lyme organizations, or who were there on their own because they are passionately committed to ensuring Lyme disease research receives the attention it deserves. I was delighted to finally meet with six Global Lyme Alliance volunteers who are committed to raising Lyme disease awareness in their communities; these were GLA Education Ambassadors Mark Liberto and his wife, BreAnna (Pennsylvania), Jen Kenley and her mom Wendy Crane (Tennessee), Melinda Sander (Missouri), and Peer to Peer Mentor Kiki Penn (Florida). In addition, GLA supporters Alex and Lynda Moresco (Illinois) were also there to lobby their local officials.
After arriving, we all went to the Capitol for training and later to attend an awards dinner honoring Sen. Susan Collins (R-ME) and others who have sponsored and supported legislation for Lyme disease. Others receiving awards were Senator Tina Smith (D-Minnesota), Congressman Chris Smith (R-New Jersey) and Congresswoman Anna Eshoo (D-California).
The second day was devoted to meeting Senators and Congressional representatives, though most of us met with their staff members. CLA had supplied us with talking points and information packets for distribution. We went to meetings in various Senate office buildings and the Capitol wearing distinctive bright green neck scarfs we all had been given. (I learned that such colored identifiers are being used these days by grassroots lobbying efforts). After two days I looked at my Fitbit and saw I’d walked eight miles.
I along with another advocate from Connecticut met with three state offices representing our state of Connecticut—the legislative correspondent for Sen. Christopher Murphy, and legislative assistants for Sen. Richard Blumenthal and Congressman Jim Himes. At all of our meetings I was impressed by the level of knowledge regarding risks associated with contracting Lyme disease as well as the long-term complications that people living with the illness may experience. The representatives were empathetic and truly wanted to understand the overall impact of the disease on patients and their families—not just in terms of physical health, but finances and emotions as well. I walked away from each meeting feeling confident that our lobbying efforts were well received. Our meetings were truly rewarding because every office representative we met with possessed a long-standing commitment to the Lyme community, and knew the importance of allocating the funds to support the Kay Hagan Tick Act and other Lyme-related projects.
After my two days there, I felt energized and more determined than ever to spread the message that federal funds for Lyme and other tick-borne diseases must be fully committed if we are to protect the long-term health of an increasingly vulnerable segment of Americans. It was truly a worthwhile endeavor and I’m proud to have been a part of this effort. As Senator Collins said, “we must knockout these devastating diseases.” Lobbying was new to me, but I am ready to continue the fight!