Robert F. Kennedy Jr. vows to give patients, physicians more say in Lyme disease fight

U.S. Health and Human Services Secretary Robert F. Kennedy Jr. on Monday pledged more federal attention and resources aimed at fighting Lyme disease, with a focus on the views of patients and front-line physicians.

"The gaslighting of Lyme patients is over," Kennedy said at the start of a panel discussion in Washington, D.C., on the disease, of which nearly 4,000 cases were reported on Long Island in 2023, the most statewide.

"For many years, this agency refused to engage with the Lyme community," he said. "Top people said [Lyme disease] didn't exist."

He said the agency has launched a dedicated online portal for information and updates on Lyme disease and announced the renewal of the Lyme X Innovation Accelerator, a partnership with the Steven & Alexandra Cohen Foundation, the largest private funder of Lyme and tick-borne disease research in the United States. In a statement released after the meetings, HHS said the $10 million initiative will "advance artificial intelligence tools that support earlier and more accurate detection across stages of infection." 

More than 89,000 cases of Lyme disease were reported nationally in 2023, the most recent data available, according to the Centers for Disease Control and Prevention. Officials believe the actual number is higher, since many of the symptoms — fatigue, joint pain, headache — are not always recognized.

Additionally, more than 21,000 Lyme disease cases were reported in New York that year. Long Island topped the state with 3,299 reported cases in Suffolk County and 697 in Nassau County.

Kennedy told the panel of patients and medical experts that he and every member of his family have had the disease at some point. Another member of the panel, Rep. Chris Smith, a New Jersey Republican who has long advocated for Lyme disease patients, said he is hopeful federal investigators will be able to find its origins, mentioning Plum Island as one of the possible sites. Kennedy, who has previously said that it is "highly likely" Lyme disease was developed as a military bioweapon on Plum Island, did not comment on the issue Monday.

Most infectious disease experts and federal officials have dismissed any possibility that the tick-borne disease was created as a military weapon.

HHS will also set up "centers of excellence" around the country to help identify new and better ways to diagnose Lyme disease, and the National Institutes of Health will launch a new study of pediatric cases in a partnership with the Children’s National Hospital in Washington, D.C.

Dr. Andrew Handel, a pediatric infectious disease expert at Stony Brook Children’s Hospital who has been part of numerous Lyme disease clinical trials, said he is hopeful the attention will result in more education and resources.

"Lyme disease is a major problem on Long Island and the problem is only getting worse each year," he said. "We are happy to receive that attention and focus whenever possible because we want to increase awareness, not just treatment and diagnosis, but prevention."

He also said it’s important that any research on Lyme disease is "rigorously vetted and undergoes a robust peer review process ... well based in science."

Handel said he was also encouraged that the agency is interested in researching post-treatment Lyme disease syndrome, also known as long Lyme, an issue he and his fellow Stony Brook researchers have worked on for years.

"We know that antibiotics work very well but for reasons that we still don't understand, there's a subset of patients who have persistent symptoms after the infection is resolved and the bacteria is gone," he said. "It needs to be a larger focus for the research community and that’s something we would definitely pursue if funding becomes available."

By Lisa L. Colangelo

lisa.colangelo@newsday.com@lisalcolangelo

Lisa joined Newsday as a staff writer in 2019. She previously worked at amNewYork, the New York Daily News and the Asbury Park Press covering politics, government and general assignment.