The US Department of Health and Human Services (HHS) said it will continue to fund a Lyme disease project that aims to accelerate development of diagnostics for tick-borne diseases.

Secretary Robert F. Kennedy, Jr, announced on December 15, 2025, what he called the “renewal” of funding for the LymeX Innovation Accelerator, which got off the ground in 2020 as a public-private partnership. When LymeX was established, the federal government provided $15 million in funding, while the Steven & Alexandra Cohen Foundation provided $10 million.

Kennedy did not say how much federal funding would be devoted to the project going forward but said that it would be a 3-year continued partnership with the Cohen Foundation. He made the announcement at an HHS “roundtable” with patients, advocates, researchers, and manufacturers as speakers. National Institutes of Health Director Jay Bhattacharya, MD, and Centers for Medicare & Medicaid Services (CMS) Administrator Mehmet Oz, MD, also spoke.

Speaker names were not made public in advance, and only one disclosed a potential conflict. Many, including Kennedy, said they had been infected with Borrelia burgdorferi (the Lyme bacteria) or had family members who had “chronic” Lyme and had been ignored by HHS and clinicians.

“Chronic Lyme disease” is not a medical diagnosis, and the term is discouraged from use by the CDC. The term implies that “prolonged symptoms are caused by an ongoing bacterial infection when, in fact, the cause is not currently known,” according to the CDC. Symptoms after treatment are referred to as post-treatment Lyme disease syndrome.

“For many years, this agency had a deliberate policy to refuse to engage with the Lyme community, and there were top officials in this agency who were saying that Lyme disease did not exist,” Kennedy said, adding that for decades, patients have received “inadequate care and, at some times, derision.”

Kennedy said one of his sons had been referred to a psychiatrist for his Lyme symptoms. “The gaslighting of Lyme patients is over,” he said.

The CDC’s most recent estimates are that about 90,000 Americans are acutely infected each year, but the CDC acknowledges that to be an undercount and said there may be as many as 476,000 annually. Kennedy claimed the illness “affects 35 million Americans.”

All speakers agreed that better diagnostics are needed to determine how many people may be infected or have a post-viral syndrome.

In 2024, the Biden administration issued a strategic plan to flesh out the LymeX program.

Kennedy said the Health Resources and Services Administration would establish a Centers of Excellence program for Lyme disease to identify the best diagnostics and “the best protocols that are successful in the field.”

The agency will, in 2026, launch an updated version of the Infection-Associated Chronic Illnesses Provider Manual through a “living evidence” approach. HHS will use artificial intelligence to continuously scan emerging research “so that guidance can be updated in near real-time.”

Anticipated LymeX projects are being accumulated at a new HHS website. One of the projects will be a directory of providers who treat Lyme disease.

Oz announced at the roundtable that CMS is clarifying that Medicare’s Chronic Care Management program includes beneficiaries who have Lyme disease.

“We’re going to pay for it,” he said.

Alicia Ault is a Saint Petersburg, Florida-based freelance journalist whose work has appeared in many health and science publications, including Smithsonian.com. You can find her on X @aliciaault and on Bluesky @aliciaault.bsky.social.