In a nutshell, a tick bite has turned me into the bionic woman.
Due to a delayed and misdiagnosis, I had severe complications from Lyme and tick-borne diseases.This led to the replacement and reconstruction of 18 joints in my (relatively young) body.
When I learned that I had been improperly diagnosed for years, I found myself so perplexed. How was it possible that I had slipped through the cracks? After all, I was well insured, had access to some of the best specialists at some of the most prominent medical institutions in the world. If this had happened to me, what was happening to those who didn’t have that access?
As you can imagine, during those years that I was laid up and recovering, I had a lot of time on my hands and I knew that this problem was much larger than my own. And when I realized I needed better tools in my belt to help enact real, enduring change for my community, I returned to the classroom to pursue my masters in public health at the University of North Carolina Chapel Hill Gillings School of Global Public Health.
My lived experience as a patient is what first motivated me. I saw firsthand the gaps in diagnosis, treatment, and support that so many patients face. As I was undergoing treatment and over a dozen orthopedic surgeries, I recognized how essential it was to have great access to the care and support system needed to restore my health. I recognized how fortunate I was to have the opportunity to improve my condition and live a full and meaningful life. This is why I am committed to working towards a world in which healthcare is equitable and just– because everyone deserves that opportunity.
Advocacy was the natural path forward—it allowed me to channel the most mentally horrific and physically grueling experience of my life into something productive. Being an advocate and sharing my story has been so helpful in my own healing journey. It has allowed me to reclaim some of what had been taken from me in this journey.
Through my work at Center for Lyme Action, I aim to ensure that patients’ voices are heard in Washington, that research is supported, and that policy changes translate into real improvements in the lives of people living with Lyme and other tick-borne diseases.
As someone living with the lasting effects of tick-borne diseases, I know firsthand the physical, emotional, and financial devastation these diseases can cause. And as a public health professional, I see clearly how policy, advocacy, and research must work together to create meaningful change for patients and families. This dual perspective fuels my work every day at Center for Lyme Action, where we strive to elevate the voices of patients and other stakeholders, and bring solutions forward on the national stage.
The Challenges Patients and Families Face That Policy Can Address
Lyme and tick-borne disease patients and their families often encounter barriers that extend far beyond the disease itself. Misdiagnosis and delayed treatment are far too common, leading to long-term and serious health complications. Insurance coverage for treatment can be limited or inconsistent, leaving families with steep out-of-pocket costs. Children with these diseases may struggle in school and adults struggle to work due to debilitating symptoms, yet accommodations are not always guaranteed.
Policy has the power to change this. Federal investment in improved diagnostics, expanded provider education, and research into safe and effective treatment options can help shorten the path to accurate care. Stronger insurance protections can ease the financial burden on families. Public health strategies that prioritize awareness and prevention can reduce the number of new cases altogether. For patients like me, these policies aren’t abstract—they are the difference between being able to work, study, and live fully, or being sidelined by a preventable or treatable illness.
Research provides hope. Patient support provides strength. But advocacy provides the bridge to action. Without advocacy, groundbreaking research findings may never translate into funded programs, new clinical guidelines, or the widespread availability of better diagnostics and treatments.
At Center for Lyme Action, we work to ensure that patient experiences inform federal decision-making. Advocacy brings the stories of families directly to lawmakers, showing them that behind the statistics are real people who need solutions now. This is not a substitute for research or patient support—it is the mechanism that ensures both are amplified and sustained through long-term policy change.
When patients, researchers, and healthcare providers join forces as advocates, we build a comprehensive movement: patients sharing lived experience, researchers driving innovation, and healthcare providers illuminating the challenges they see in the communities they serve to secure the resources and policy changes necessary to make progress possible.
In 2020, despite being an election year and the operational challenges of the Covid-19 global pandemic, Center for Lyme Action grew federal funding for Lyme disease from $59M in FY20 to $123M in FY21. Center for Lyme Action was thrilled to be a key driver for the historic $64M increase over FY20 for Lyme and tick-borne disease funding.
For FY22, Center for Lyme Action brought together 230 advocates from 40 states for its second virtual advocacy day in February 2021, resulting in increases for Lyme and tick-borne diseases from $123M to record-breaking appropriations of $157.5M.
For more than 5 years, advocates have come together each February for the annual Virtual Advocacy Day to make appropriations requests in meetings, complete constituent appropriations forms, and write letters to garner more support from Congress on Lyme and tick-borne diseases.
To date, the impact of this collective effort led by Center for Lyme Action has been very significant. Center for Lyme Action’s network of over 10,000 advocates from all 50 states, DC and Puerto Rico advocacy have worked to increase federal funding for Lyme and tick-borne disease annually to over $170M per fiscal year. The total incremental impact is $502M since the organization started in 2019.
In February 2024, the Department of Health and Human Services released the first-ever National Public Health Strategy to Prevent and Control Vector-Borne Diseases in Humans, developed as part of the Kay Hagan Tick Act. This strategy was the product of years of collaboration among 16+ federal agencies, public health experts, and community stakeholders. It provides a comprehensive roadmap for reducing the burden of vector-bore illnesses through improved surveillance, diagnostics, prevention, and treatment.
But a strategy is only as strong as its implementation. Without sustained funding, leadership, and accountability, the plan will remain words on paper instead of real change for patients. That is why continued advocacy is critically important. We must ensure that Congress and federal agencies prioritize this strategy, turning it into concrete programs that will protect families, advance research, and ultimately save lives.
Building on Momentum: Critical Legislation in Congress
In addition to advancing the National Public Health Strategy, Congress is considering several important bills that represent real progress in strengthening our nation’s prevention, detection, treatment, and research infrastructure for Lyme and other tick-borne diseases.
We have a base of support through the Lyme and Tick-borne Diseases Caucus, a bipartisan group in the House led by Representative Chris Smith (NJ-4) and Representative Lloyd Doggett (TX-10).
On the Senate side, Senator Collins (R-ME), Senator Tina Smith (D-MN) and Senator Angus King (I-ME) are leading the Kay Hagan Tick Reauthorization Act, which recently passed unanimously in the Senate HELP Committee—an encouraging sign of bipartisan commitment to this issue. Now, we look to the full Senate to move this vital legislation forward.
In the House, several bills are underway that complement this effort:
Together, these bills represent a comprehensive approach to combating tick-borne diseases through science, innovation, and coordinated national action. Each one strengthens our ability to protect families across the country. We need your voice to help push them forward–and we’ve streamlined our efforts to make it easier for you to make a difference.
Moving Forward Together
The fight against Lyme and tick-borne diseases requires all of us—patients, families, providers, researchers, and policymakers. My journey as both a patient and a public health professional has taught me that the most powerful progress happens when we unite across those perspectives.
Each advocate brings something unique to this mission — whether it’s personal experience, professional expertise, or a desire to support those affected by Lyme and tick-borne diseases. Together, we are building a strong, informed, and effective coalition to push for lasting change.
The CLA team and fellow advocates are here for you. Don’t hesitate to reach out with questions, ideas, or just to introduce yourself. We encourage you to participate in community calls, training sessions, and our advocacy activities–especially our Virtual Advocacy Day. More information on this event to be shared soon!
Calls to Action:
As I’ve shared, I wear multiple hats. First and foremost, I am a patient. I relearned how to walk and rebuilt my independence after being bedridden for years. That experience shapes everything I do.
Today, I work full-time to advance policy solutions for the public health crisis that has fundamentally altered my life. But I am also a public health professional. From that lens, I can say with more certainty than ever before: real, enduring change is within reach.
The momentum is building—in Congress, in research, and in public awareness. But to turn that momentum into lasting progress, we need every voice at the table. I invite you to join us in this fight. Together, we can ensure that our nation is equipped to prevent, detect and respond to these insidious diseases.
To learn more, please visit centerforlymeaction.org or connect with us via email info@centerforlymeaction.org.