Bay Area Lyme Spotlight Series
By Charlotte Mao, MD, MPH, Bay Area Lyme Foundation
“Chronic Lyme Disease patients have been ignored for too long. That must end now.”
– Charlotte Mao, MD, MPH
A Long-Overdue Moment of Recognition
Starting in 2026, Lyme disease and other tick-borne disease patients and their families have some reason to be encouraged by the growing recognition of the realities they face and the prospect of continued research to support new diagnostics and treatments.
The December 15, 2025, Department of Health and Human Services (HHS) roundtable marked something rare and long overdue: federal recognition of patient need, grounded in scientific evidence presented by researchers, clinicians, and patient advocates. But patients need more than another moment of recognition. They need results. In 2026, the question is whether that recognition will translate into sustained action, measurable progress, and real improvements in care.
The Human Cost of Dismissal and System Failure
For decades, patients and families have endured an “invisible illness,” one often misdiagnosed, minimized, or dismissed outright. Too many were told their symptoms were psychological or exaggerated, even as they struggled with debilitating fatigue, neurological and neuropsychiatric problems, joint pain, cardiac complications, and more. At the HHS roundtable, federal officials, clinicians, and researchers sent a clear message: the era of ignoring or gaslighting Lyme patients must end.
As a pediatric infectious disease physician, I have seen this reality up close at Boston Children’s Hospital where Lyme disease was the single most common reason patients were referred to my infectious disease clinic, and later at a specialty center for tick-borne illness at Spaulding Rehabilitation Hospital. I watched families lose time, health, dollars, and trust in the medical system. This was not the exception. It is what happens when a system lacks reliable diagnostics and fails to confront its own blind spots.
From Recognition to Results: What Must Happen Next
That acknowledgment from HHS matters. But recognition alone will not solve a public health crisis affecting approximately 500,000 newly diagnosed Americans each year. What patients need now is action: accelerated development of accurate diagnostics, rigorous patient-centered research for better treatments, and reliable access to care.
“Recognition alone will not solve a public health crisis affecting approximately 500,000 newly diagnosed Americans each year. What patients need now is action.”
– Charlotte Mao, MD, MPH
Bay Area Lyme Foundation welcomes this federal focus on Lyme disease patients, including the acknowledgment that persistent Lyme disease is a chronic condition requiring serious, coordinated care. These priorities align with the work we have led for more than a decade. We launched the Lyme Disease Biobank because researchers lacked access to well-characterized samples from Lyme disease patients, and with philanthropic support, it has helped move the field beyond speculation toward evidence.
Will 2026 Be the Year of Accountability?
National attention is welcome, but progress depends on whether this moment leads to sustained federal leadership. Congress must significantly increase dedicated funding for Lyme and other tick-borne diseases, commensurate with their prevalence and impact. Patients should not have to fight for care, coverage, or credibility. One promising sign is that HHS has described plans to build Health Resources and Services Administration (HRSA)-supported Centers of Excellence to identify and standardize the most effective diagnostics and care protocols, educate clinicians, and ensure patients are directed to providers who can help.
The HHS roundtable signaled a shift in tone. Now, 2026 must deliver a shift in policy, investment, and urgency. The patients have waited long enough.
Charlotte Mao, MD, MPH, Bay Area Lyme Foundation Advisory Board Member and Science Team Member, is a pediatric infectious diseases physician whose area of clinical focus is Lyme disease and associated infections. She graduated from Harvard Medical School and completed her pediatric residency and pediatric ID fellowship at Boston Children’s Hospital. Her prior area of subspecialty during 25 years at Boston Children’s Hospital was pediatric HIV clinical care and clinical research. She turned her focus to Lyme disease and associated infections after gaining extensive clinical experience with pediatric Lyme disease in the referral ID clinic there. Later, joining the Department of Pediatric Infectious Disease at Massachusetts General Hospital, she provided consultative pediatric ID specialty care in a multidisciplinary clinic for children with complex Lyme disease and associated infections at the Dean Center for Tickborne Illness at Spaulding Rehabilitation Hospital. She is the Curriculum Director for Invisible International’s online accredited physician education initiative that focuses on vector-borne and environmental illness. Click here to read her published paper entitled Microbes and Mental Illness: Past, Present, and Future.
This blog is part of our Bay Area Lyme Spotlight series. If you require a copy of this article in a bigger typeface and/or double-spaced layout, contact us here. Bay Area Lyme Foundation provides reliable, fact-based information about Lyme and tick-borne diseases so that prevention and the importance of early treatment are common knowledge. For more information about Bay Area Lyme, including our research and prevention programs, go to www.bayarealyme.org.
Great blog, Dr. Mao. I’m hopeful that HHS’ new direction on vector-borne disease continues into the future and provides the funding to develop accurate diagnostics and cures for each of the 3Bs. The only way to provide funding based on disease severity and prevalence is to conduct this research as a priority. Some or many believe chronic Lyme isn’t primarily Lyme; It’s primarily driven by Bartonella and Babesia. Although Lyme is very important, we need the data and to distribute funds appropriately. Based on vet studies by Dr. Breitschwerdt that show 28-55% infection rate from exposure to our pets with the same symptoms described as “chronic Lyme,” we need to make sure we truly understand the disease patterns and priorities. With the vast amount of symptoms Bartonella causes, far more than Lyme and Babesia combined, we need to think holistically about what is driving disease and not just focus heavily on one pathogen because it’s the easiest to test.
Debbie, thank you for this thoughtful comment. I fully agree that co-infections like Bartonella and Babesia can be an important, and sometimes the central, part of the picture for many patients. We need much more research as well on these infections and how combinations of infections contribute to persistent illness.
That is exactly why better diagnostics and more rigorous, patient-centered studies are so critical. Without reliable tests and stronger data, patients are left in uncertainty and too often without clear paths to effective diagnosis and care. I appreciate you raising this broader view. It helps reinforce the urgency of advancing research and therapies across the full spectrum of vector-borne disease. Recognizing the importance of broader research beyond Lyme disease, this year our Emerging Leaders Award will include an additional grant to support innovative research on other Lyme-associated vector-borne infections.
https://www.bayarealyme.org/blog/bay-area-lyme-foundation-opens-applications-for-2026-emerging-leader-awards-and-research-grants/