Recapping The Fly In
The 5th annual Lyme Fly-In was held on Wednesday, February 19th. More than 500 advocates registered for the event, which is a further increase from last year. These individuals attended more than 200 meetings with Senators, Members of Congress, and their staff. Many staffers commented positively on the day and highlighted how it allowed constituents to access a platform in which they could voice their stories and communicate to their representatives.
Advocacy is an integral part of Project Lyme’s mission. As a founding charter member of Center for Lyme Action, the organization had many representatives present throughout the day including members of our Board of Directors, Emerging Leader Board, staff, and community volunteers. Project Lyme board member Melissa Bell, who led a constituency of advocates in Florida, said “Lyme disease has been grossly underfunded for far too long. The Center for Lyme Action Virtual Fly-In provided an outstanding opportunity for Lyme patients to educate lawmakers, share their experiences, and request much needed funding of various CDC, NIH, HHS and DOD programs.”
Five Appropriations Requests for FY26
The main purpose of the Fly-In was to gain support for increased federal appropriations focused on tick-borne diseases. Getting representatives to buy is imperative to money actually going towards the goals of the Lyme community. Higher accuracy in case reporting, better intergovernmental communications, and innovative ways to diagnose and treat are just some of the things advocates asked for. Center for Lyme Action focused on five requests to increase appropriations for fiscal year 2026:
- $30 million to fully fund the Kay Hagan Tick Act
- $5 million for the HHS implementation of the LymeX Innovation Accelerator
- $35 million to fund Lyme and tickborne disease prevention at the CDC
- $135 million to fund research by the National Institutes of Health’s National Institute of Allergy and Infectious Diseases (NIAID)
- $9 million to fund the peer-reviewed Tick-borne Disease Research program at the Department of Defense
Advocates also communicated the large number of people affected by Lyme, as well as how significantly underfunded it is compared to other Infectious Diseases. According to the CDC, 476,000 Americans have received a Lyme diagnosis every year in the last decade, and up to 20%, suffer from chronically persistent Lyme symptoms. Citing these data points allowed advocates to dispel myths that Lyme is a “rare disease” and deserves increased budget appropriations.
For those who weren’t able to attend but are still interested in being a voice for increased Lyme appropriations, you can visit your Congressional representative’s page and search for appropriations form. Once there, use the appropriations requests outline from Center for Lyme Action to help you accurately fill out the form.
Project Lyme plans to maintain its support of the Center for Lyme Action and looks forward to continuing the fight for the needs of Lyme patients on Capitol Hill.
Testimony from Project Lyme’s Emerging Leader Board
Pauli from NY – I was really inspired by the people I met preparing for the fly in. They all made such a strong impression on me in our practice sessions. I had three meetings on the day of the fly in. One meeting had more than twenty advocates in attendance. I’m grateful to live in a state that is becoming more and more aware of the severity of Lyme disease.
Maria from PA – It was empowering to have the opportunity to share with elected representatives how Lyme disease and co-infections have profoundly impacted my life. With Pennsylvania leading the nation in reported Lyme disease cases, we had nearly 30 attendees in some meetings. I’m looking forward to seeing how our efforts from the Fly-In will help increase federal funding for Lyme disease research and continue to raise awareness about this growing epidemic. Maria is featured in the photo to the right.
Ashley from WV – Being apart of the work being done in the Lyme & Tick borne disease community has been extremely fulfilling. This year I had the opportunity to Lead meetings with my states Senator and staff alongside several other patient advocates suffering from Lyme&TBD for the 2025 Center for Lyme Action Virtual Fly In. We got to share how this life stealing disease has changed our lives and work to increase support of the Kay Hagan Tick Act, federal funding, research , and more! It has been
years of both treating and advocating for change surrounding Lyme disease and it still brings me to tears to see the suffering that is experienced by patients like myself but also tears of JOY to be apart of the revolution of CHANGE to come & something as impactful as meeting with congress 💚
