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U.S. Health Secretary Robert F. Kennedy Jr. signaled a major shift in federal Lyme disease policy last week, after convening a high-level roundtable that acknowledged decades of gaslighting patients chronically ill with the disease.
The two-hour discussion, held Dec. 15, brought together patients, physicians, researchers and lawmakers for two back-to-back talks. The discussions led to new commitments to improve diagnosis, treatment and insurance coverage.
The first panel focused on patient experiences, misdiagnosis and the day-to-day clinical challenges of chronic Lyme disease. The second explored emerging scientific and technological approaches, including artificial intelligence (AI), advanced diagnostic tools, immune-based therapies and integrated data analysis.
Kennedy opened the session by describing Lyme disease as both a neglected public health issue and a deeply personal one. He said ticks were a constant concern during the decades he raised his family near Bedford, New York, and explained how the disease affected multiple members of his family.
“I got Lyme disease in about 1986 when it was still very, very difficult to even get it diagnosed,” Kennedy said. One of his sons later developed Bell’s palsy and another son suffered from chronic Lyme disease. He described the condition as “an invisible illness” and said federal health agencies ignored patients’ concerns for decades.
“For many years, this agency had a deliberate policy to refuse to engage with the Lyme community,” Kennedy said. Some officials dismissed patients’ symptoms as psychosomatic and referred them to psychiatric care. “You can’t imagine a worse combination,” he said.
‘Lives have been destroyed by this disease’
Lyme disease is a bacterial infection spread through tick bites. The Centers for Disease Control and Prevention estimates that 476,000 people are diagnosed and treated each year. Federal data suggest 5 to 7 million Americans have been infected over the past decade.
Current antibody-based tests often miss early and late-stage infections, which delays treatment, according to the U.S. Department of Health and Human Services (HHS). For up to 20% of patients, symptoms persist and progress into chronic, debilitating conditions.
Panelists repeatedly emphasized that Lyme disease is not a simple infection but a complex, multi-system illness often complicated by co-infections that can mimic or trigger other conditions, including multiple sclerosis, rheumatoid arthritis and fibromyalgia.
“I’ve known many, many people whose lives have been destroyed by this disease, who go to doctor after doctor after doctor trying to find somebody who would treat it,” Kennedy said.
He described the roundtable as a turning point. “This day marks a milestone in this agency where we are recognizing that this is an illness,” he said. “One of the reasons we wanted to host this meeting, as I made clear, is to announce to the world that the gaslighting of Lyme patients is over.”
AI, new tests and Medicare coverage signal break with past Lyme policy
The second panel focused on innovation, with researchers from HHS, the National Institutes of Health and private institutions outlining new diagnostic tools and data-driven approaches to treating Lyme.
Speakers highlighted direct detection testing, machine learning to analyze complex biological data, and therapies designed to address both infection and chronic inflammation.
During the session, Kennedy announced the renewal of the LymeX Innovation Accelerator, a public-private partnership launched in 2020 and backed by the Steven & Alexandra Cohen Foundation.
The program includes more than $10 million in prize funding to advance the development of next-generation diagnostics, with several teams currently moving through clinical validation and regulatory review, according to HHS.
According to HHS, the renewed effort will focus on patient-centered innovation and AI-driven diagnostic tools “that support earlier and more accurate detection across stages of infection.”
HHS also unveiled a Lyme disease webpage and outlined a national strategy highlighting open data, transparent research and direct engagement with patients.
In a major policy update, Centers for Medicare and Medicaid Services Administrator Mehmet Oz clarified that Medicare will explicitly cover care for chronic Lyme disease under updated Chronic Care Management for Complex Conditions guidance.
“We can cover chronic Lyme disease. It’s actually already covered,” Oz said. Chronic Lyme disease has clearly identifiable infectious triggers, so “we’ve updated our website to make it clear,” he added.
‘The burden is enormous’ for patients, families
Lawmakers welcomed the shift. Rep. Morgan Griffith (R-Va.), who said he suffers from Alpha-gal syndrome, also known as red meat allergy, linked to tick exposure, called the discussion a sign of serious federal engagement.
“Today’s roundtable shows we have solid commitment from Secretary Kennedy, Dr. Oz and lawmakers to address Lyme disease and other tickborne illnesses in the United States,” Griffith said in HHS’ press release.
Patient stories highlighted the human toll of Lyme disease. Olivia Goodreau said she saw 51 doctors over 18 months before receiving a Lyme diagnosis. Her diagnosis was followed by years of testing to identify multiple co-infections.
Samuel Sofie described families draining their savings in search of effective care. “Some patients spend years sinking all of their money into treatment, but they don’t get better,” Sofie said.
Kennedy emphasized that Lyme disease is a significant contributor to chronic illness across the country. “The burden is enormous. And the economic costs have not been quantified anywhere, but … there are all kinds of collateral costs. When people can’t work, families are destroyed. And I’ve seen the pressure that it puts on families,” he said.
HHS Deputy Secretary Jim O’Neill framed the roundtable as part of a broader federal effort to tackle chronic disease through technology. “This event shows that we’re not waiting until the New Year to act,” he said.
Advocates welcomed the shift but stressed the need for follow-through. Dorothy Kupcha Leland, president of LymeDisease.org, wrote in her blog that the roundtable addressed long-standing patient needs, including better testing, treatment and insurance coverage, but warned that meaningful change will require sustained political will, infrastructure and funding.
“This wasn’t a bad way to begin a much-needed conversation,” she wrote. “But it remains to be seen what if anything will come of it.”
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