
Kennedy, First HHS Secretary to Fully Recognize Lyme Disease, Launches Historic National Initiative
HHS Secretary Robert F. Kennedy, Jr. announces new federal actions to combat Lyme disease in Concord, New Hampshire, on Friday, May 29, 2026, as part of his “Take Back Your Health” tour. CSPAN
Health and Human Services Secretary Robert F. Kennedy, Jr. announced one of the most ambitious federal efforts ever to combat Lyme disease on Friday, May 29, 2026, at a 2:00 p.m. press conference in Room 100 of the New Hampshire State House in Concord. The measures follow the department’s first national Lyme roundtable, held in Washington, D.C., in December 2025, at which HHS formally recognized Lyme — in both its acute and chronic forms — as a serious public-health condition for the first time.
The recognition marks a shift after years in which the federal government had no unified strategy for a disease the CDC says is diagnosed in 476,000 Americans annually, with 5 to 7 million infections over the past decade. Kennedy has acknowledged that the agency once held what he called a deliberate policy of refusing to engage with the Lyme community. Researchers estimate that 10 to 20 percent of patients treated early remain symptomatic, and emergency room visits for tick bites recently reached their highest springtime level in nearly a decade.
“Americans deserve an answer,” Kennedy said from the podium. “They deserve gold-standard science, and a healthcare system that treats suffering seriously.” He recalled that one of his sons suffered facial paralysis for a year after a Lyme diagnosis and noted that President Donald Trump first made Lyme a national priority by signing the Kay Hagan Tick Act in 2019.
In the HHS release issued the same day, Kennedy said millions of Americans with Lyme and other tick-borne illnesses “have spent years searching for answers, treatment, and support,” and described the package as “one of the most ambitious federal efforts ever to combat Lyme disease.” The department reaffirmed a goal of cutting Lyme cases 25 percent by 2035 compared with 2022 levels.
The most consequential change for patients concerns coverage. At the December roundtable, CMS Administrator Dr. Mehmet Oz confirmed that Medicare is being updated to explicitly require coverage for extended Lyme treatment, including treatment for associated co-infections — addressing a longstanding gap that has strained patients financially. CMS also issued guidance clarifying support for beneficiaries with Lyme and related conditions through its Chronic Care Management Program.
Dr. Stephanie Haridopolos, Director of National Health Communications for the Office of the U.S. Surgeon General, told the audience that roughly 31 million people are bitten by ticks each year in the United States.
“We’re going to make the invisible diseases visible now,” she said. “We know prevention is key. We can prevent not only Lyme disease, but all the co-infections that go with it.”
Dr. Kristen Honey, the HHS Chief Data Officer now managing public-private partnerships, said the effort originated outside government.
“Let me be clear that this movement did not start in government,” Honey said. “It started with all of you. It started with the patients, it started with the caregivers, it started with the frontline providers and those affected families saying there’s a problem here, and rose up, came together, formed unusual allies.”
She credited participants in the December roundtable — among them Senator Susan Collins, Representative Chris Smith, and Duvi Honig of the Orthodox Jewish Chamber of Commerce, along with Olivia Goodreau of LivLyme, Dr. Steve Phillips, and Sam Sofia — saying that without them “none of this would be happening.”
At that session, Collins, author of the Kay Hagan TICK Act, pressed for better diagnostics and cited a Maine clinical trial for a Lyme vaccine; Smith, a 30-year advocate, said Lyme patients “deserve answers”; and Honig called for CDC Updates, Nationwide awareness campaigns, expanded insurance coverage, and increased provider education.
Honey also framed the challenges in market terms.
“For the first time in four years, open innovation at HHS and LymeX is available to all the public,” she said. “All Americans and U.S. businesses can participate, not just those already in the LymeX pipeline.”
The department detailed three new LymeX challenges totaling up to $2.5 million.
The largest is the TOPx HHS Tech Sprint for AI and Invisible Illness, offering up to $2 million, including a $1 million grand prize, for tools that use artificial intelligence and open data to help patients with Lyme and other “invisible illnesses,” including Long COVID and ME/CFS, get answers and care faster.
“If it’s invisible, you are welcome here,” Honey said.
The LymeX Visible Voices Prize offers up to $250,000 for educational tools and awareness campaigns, while the LymeX Healthathon Innovation Sprint offers another $250,000 for frontline solutions, including new uses of existing medicines.
The broader Friday package, according to the HHS release, also includes a multi-million-dollar tick-control pilot program, new NIH funding to combat Alpha-gal syndrome, and a public-private collaboration to connect patients with experienced providers, all under Kennedy’s Make America Healthy Again agenda.
Separately, through the LymeX partnership, HHS is updating its Living Evidence Guidelines for clinicians treating infection-associated chronic conditions, with Version 2.0 launched in May 2026 and scheduled to refresh every six months as new science emerges.
The challenges build on the LymeX Innovation Accelerator, a public-private partnership between HHS and the Steven & Alexandra Cohen Foundation launched during President Trump’s first term. Through LymeX, HHS recently launched a $10 million Diagnostics Prize, and two improved FDA-cleared Lyme tests have reached the market over the past two years.
The National Institutes of Health invests nearly $50 million annually in Lyme research and approximately $122 million annually in broader tick-borne disease research.
The new tick-control pilot, led by the Centers for Disease Control and Prevention and HHS, will begin with researchers at the New England Center of Excellence in Vector-Borne Diseases and build on community work with the Indian Health Service and the Wampanoag Tribe in Massachusetts.
HHS also announced action on Alpha-gal syndrome, a tick-linked condition that can trigger serious allergic reactions to red meat. The CDC estimates nearly 500,000 Americans live with the condition.
NIH has identified candidate products that may protect people after a tick bite; private companies would supply the products while NIH funds research to evaluate them.
The department is also partnering with the International Lyme and Associated Diseases Society to offer a clinician locator tool through hhs.gov/lyme.
Kennedy reiterated support for reauthorizing the bipartisan Kay Hagan TICK Act, signed by President Trump in 2019, which recently advanced unanimously through the House Energy and Commerce Committee.
Officials expect another heavy tick season in 2026. The new programs mark the federal government’s most comprehensive response to Lyme disease to date and represent the first time HHS has formally aligned federal policy, reimbursement, research, innovation incentives, and public-private partnerships around both acute and chronic Lyme disease.
Washington — JBizNews Desk
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