Lyme Disease Underfunded: Why Research Is Still Too Slow

Lyme disease is underfunded—and patients are paying the price. Every day, I work with people living with this illness. I see the pain, the confusion, the fatigue, the brain fog—the profound disruption Lyme disease causes in a person’s life. As a physician who has treated thousands of patients, I see firsthand how this underfunding translates directly into delayed diagnosis, delayed treatment, and prolonged suffering.

Awareness has improved. Progress has been made. But the pace remains nowhere near where it needs to be.

We are still too slow to diagnose. Too slow to treat. Too slow to research. Too slow to act.

And the truth is, it doesn’t have to be this way.

The Gap Between Need and Investment

Lyme disease is one of the most common vector-borne diseases in the United States, with estimates approaching half a million new cases each year—and that number continues to rise. Underfunding does not imply a lack of scientific rigor—it reflects a mismatch between disease burden and research prioritization.

Yet Lyme disease remains underfunded compared to conditions with similar prevalence and disability burden.This underfunding contributes to a persistent education gap that leaves physicians and patients without answers.

Publicly available data from the National Institutes of Health (NIH) show that Lyme disease research receives a fraction of the funding allocated to other infectious and chronic conditions. The Centers for Disease Control and Prevention (CDC) continues to document rising case numbers, yet research investment has not kept pace with clinical need.

The problem is not a lack of science. It is a lack of urgency.

What COVID-19 Showed Us About Research Speed

When the COVID-19 pandemic struck, the response was unprecedented. Research, diagnostics, vaccines, logistics, and public education were accelerated simultaneously. Agencies coordinated. Funding was mobilized. Barriers were reduced. Timelines that once took years were compressed into months.

The lesson was not political. It was structural.

When the system decides speed matters, it moves.

Now imagine applying even a fraction of that urgency to Lyme disease—a condition that remains underfunded despite infecting hundreds of thousands of Americans each year.

Because people with Lyme disease are not facing a minor inconvenience. Many are losing years of their lives—sometimes decades. They are frequently misdiagnosed or diagnosed late and labeled with fibromyalgia, chronic fatigue, depression, or anxiety alone.

We can—and should—do better.

What Adequate Funding Could Achieve

Faster progress would not require reinventing medicine—it would require prioritizing Lyme disease with the seriousness its impact demands.

If Lyme disease were no longer underfunded, we could see:

Accelerated development of better diagnostic testing, particularly for later-stage disease
Serious investment in studying persistent infection and common co-infections such as Babesia and Bartonella
Federal support for new therapeutics and meaningful investigation into Lyme’s neurological, psychiatric, and autoimmune effects
Improved physician education through national training programs and continuing medical education that reflects real-world complexity
Sustained public education—not just about tick bites, but about early recognition and prevention

The Human Cost of Underfunding

When Lyme disease is underfunded, people fall through the cracks.

Many spend years searching for a diagnosis. Those who develop Post-Treatment Lyme Disease Syndrome often face the longest delays and the fewest options.Some are treated for the wrong condition. Others are told their symptoms are psychological or exaggerated.

Yet when diagnosis finally happens—when appropriate treatment begins—many patients begin to improve.” Not overnight. Not without setbacks. But there is progress. Often, there is healing.

Now imagine if that healing could begin sooner.

That is what adequate funding makes possible.

It’s Time to Go Faster

Lyme disease has already taken too much—time, health, opportunity, and hope.

Recent public-health responses have shown us what is possible when speed, coordination, and funding align. Lyme disease can no longer remain underfunded while patients continue to suffer.

Because every day we wait is another day someone falls through the cracks.

And every step forward brings us closer to a future where people with Lyme disease receive timely diagnosis, appropriate treatment, and a real chance at recovery—without waiting years for it.

Frequently Asked Questions

Is Lyme disease underfunded? Yes. Despite being one of the most common vector-borne diseases in the U.S., Lyme disease receives significantly less research funding than other conditions with comparable prevalence and disability burden.

Why is Lyme disease underfunded? Factors include historical skepticism about chronic Lyme disease, fragmented advocacy efforts, and competition for limited research dollars. The result is a persistent gap between disease burden and research investment.

What would more funding accomplish? It could accelerate better diagnostics, support studies on persistent infection and co-infections, fund new treatments, and improve physician education—ultimately leading to faster diagnosis and better outcomes.

How can I advocate for increased Lyme disease funding? Contact your elected representatives, support Lyme disease advocacy organizations, share patient stories, and help raise awareness about the funding gap.

Did COVID-19 change how we think about research funding? Yes. The rapid mobilization of resources during the pandemic demonstrated that accelerated timelines are possible when urgency and coordination align.