By Fred Diamond

Lyme disease has long been one of the most misunderstood and underfunded illnesses in the United States, despite its devastating impact on millions of lives.

For patients and their families, this lack of awareness and funding translates to years of misdiagnosis, prolonged suffering, and a healthcare system ill-equipped to address the disease’s complexity.

Advocacy organizations such as the Center for Lyme Action are determined to change that narrative by empowering Lyme patients to become advocates for meaningful progress.

It’s important right now. I asked ChatGPT “Is the Trump Administration for or against Lyme disease federal funding?” It replied:

“While these funding decisions are made by Congress, the administration’s stance on broader health funding could influence future allocations. Notably, the Trump administration has proposed significant budget cuts to federal health agencies, including the NIH and CDC, which may impact research and prevention efforts related to Lyme disease.”

Importance of the Fly-In

On February, 18-19, the Center for Lyme Action will host its annual Virtual Fly-In, a flagship event where patients, caregivers, researchers, and supporters engage directly with members of Congress to advocate for increased funding and better policies to combat Lyme disease.

This event is not only a platform for advocacy but also a symbol of resilience and the power of grassroots movements to drive systemic change.

Turning Adversity into Advocacy

Meghan Bradshaw, the government relations manager at the Center for Lyme Action, knows firsthand the struggles of living with Lyme disease. Her journey from patient to advocate is a testament to the transformative power of purpose.

“I was misdiagnosed for years and experienced severe complications from Lyme disease,” Meghan shares. “A tick bite turned me into the bionic woman. I’ve had nine joints replaced and eight surgically fused, all before turning 30.”

Despite these challenges, Meghan refused to let her experience define her. Instead, it became the foundation of her advocacy work. She returned to school to earn a master’s in public health at UNC Chapel Hill, equipping herself with the tools to make a broader impact.

Today, she plays a pivotal role in organizing advocacy efforts and coordinating advocates to push for increased federal funding for Lyme disease.

“Advocacy has been deeply healing for me,” Meghan reflects. “It’s helped me reclaim a sense of power and control over what Lyme disease took from me.”

Johanne’s Journey of Resilience

For Johanne Schwartz, the path to advocacy was fraught with unimaginable challenges. Diagnosed after 24 years of misdiagnoses, Johanne’s life was upended by the disease’s debilitating effects.

“By the time they figured out I had Lyme, I was falling down and couldn’t use my arms and legs properly,” Johanne recalls. “I experienced neurological symptoms, including paranoia, schizophrenia, and delusions. At one point, I was wearing three jackets and hiding by dumpsters.”

Despite her fears and physical limitations, Johanne decided to take action. “The idea of stepping out and getting involved was terrifying,” she admits. “But I felt so strongly about preventing others from going through what I experienced.”

Johanne’s advocacy work began with the Center for Lyme Action’s Virtual Fly-In in 2024. Though initially nervous about using technology and speaking in public, she found support through the organization’s training and resources.

“The Fly-In allowed me to share my story, and seeing the faces of other advocates gave me the courage to keep going,” she says.

In addition to participating in advocacy meetings, Johanne contributed by helping with the appropriations process—a critical step in securing federal funding.

“Even as someone who struggles with technology, I was able to make a meaningful impact,” she says. “They [the CLA team] walked me through everything, and I felt like I was truly making a difference.”

The Importance of Advocacy

Advocacy efforts like those led by Meghan and Johanne are essential for addressing the funding disparities that plague Lyme disease research. Meghan highlighted the stark contrast in federal funding for Lyme disease compared to other vector-borne illnesses.

“On average, the per-patient funding for Lyme disease research at the NIH was around $107,” Meghan explains. “Compare that to diseases like West Nile and malaria, which receive between $70,000 and $108,000 per patient annually. These are diseases with far fewer cases than Lyme.”

This discrepancy underscores the importance of grassroots advocacy. Over the past five years, the Center for Lyme Action has worked tirelessly to build relationships with policymakers and secure significant gains in funding.

“We’ve been able to triple federal funding during a time when many health programs are facing cuts,” Meghan notes. “This progress is a testament to the power of patient voices and the relationships we’ve built with congressional staffers.”

Breaking Down Barriers

One of the most remarkable aspects of the Fly-In is its accessibility. Participants can join from anywhere, whether they’re at home, in treatment, or taking a break from work.

“When I started, I was tied to an IV pole,” Meghan shares. “The Fly-In allows anyone to participate, regardless of their circumstances. It’s an empowering experience for patients who often feel voiceless.”

Johanne’s advice to first-time advocates is simple: “Never hold back. Lyme disease looks so different on everyone. Even if you’re nervous, just showing up and sharing your story can have a tremendous impact.”

Advocacy as Healing

For many participants, advocacy is not just about driving change but also about reclaiming a sense of control and finding healing.

“Getting involved with patient advocacy helped me feel like I had some power over what was happening to me,” Meghan reflects. “It’s been deeply healing to know that my story can help prevent others from experiencing the same challenges.”

Johanne echoes this sentiment, emphasizing the importance of raising awareness.

“People need to know about Lyme disease,” she says. “I tell people it’s like sunscreen at the beach. You take precautions, but you don’t stop going. Awareness can save lives.”

The Road Ahead

The Center for Lyme Action’s goal for 2025 is ambitious: to have advocates from all 50 states participate in the Fly-In. Historically, advocates from 47 states have joined, but some areas remain underrepresented.

“We’re working hard to fill those gaps and ensure every congressional district hears from a Lyme advocate,” Meghan said. “This year, we’re also focusing on new legislation and authorization bills that have the potential to bring transformative change for our patient community.”

“Advocacy is bold and courageous,” Meghan said. “As Brene Brown says, vulnerability is our greatest measure of courage. By sharing our stories, we’re not only advocating for change but also finding healing and reclaiming what Lyme disease has taken from us.”

To learn more or register for the Fly-In, visit centerforlymeaction.org. Registration deadline is January 31. Together, we can drive change and ensure a brighter future for all Lyme disease patients.

Click here to listen to all episodes of the Love, Hope, Lyme Podcast or on YouTube.

Fred Diamond is based in Fairfax, Virginia and can be contacted via Facebook. His popular book, “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know” is available on Amazon. The e-version of the book is always free to Lyme survivors. PM Fred on Facebook or LinkedIn for your copy.