HHS launches a federal plan to combat long-neglected Lyme disease

WASHINGTON — The U.S. Department of Health and Human Services has launched a federal plan to combat Lyme disease, building a dedicated program around an illness that public health agencies have long left in the background even as it infects hundreds of thousands of Americans each year.

The effort centers on a standing HHS Lyme disease program, branded “Invisible Illness: Lyme Disease,” that organizes the government’s work around understanding the disease, supporting patients, and advancing new diagnostics and treatments. Health and Human Services Secretary Robert F. Kennedy Jr. has convened a Lyme Disease Roundtable with members of Congress and directed the agency to treat the tick-borne infection as a research and patient-care priority.

Lyme disease is caused by the bacterium Borrelia burgdorferi, carried primarily by blacklegged, or deer, ticks. The U.S. Centers for Disease Control and Prevention estimates that approximately 476,000 people are diagnosed and treated for Lyme disease each year in the United States, a figure drawn from insurance-claims data that far exceeds the roughly 89,000 cases reported through routine national surveillance.

What the federal plan funds

The plan’s centerpiece is a set of innovation challenges and partnerships aimed at the disease’s hardest problem: accurate, early diagnosis. The agency is running a technology sprint built “with industry, academia, and the public” to develop digital tools and AI-accelerated insights for Lyme and other hard-to-see illnesses, with up to $2 million in total cash prizes for winning submissions, alongside smaller LymeX innovation and patient-voice competitions.

HHS says it is also investing in “advanced tools including AI-enabled diagnostics, epigenetic signatures, and molecular assays to improve accuracy and early detection,” work it groups under the LymeX Innovation Accelerator. The program page points clinicians to updated living evidence guidelines and a locator to help patients find experienced providers.

The diagnostic gap the plan targets is real. A standard course of Lyme treatment is 10 to 14 days of antibiotics, and the CDC says early treatment usually leads to a rapid and complete recovery. The difficulty is catching it: untreated Lyme can produce a wide range of symptoms, from fever and rash to facial paralysis, an irregular heartbeat, and arthritis, which is why HHS calls the disease a great imitator. By the agency’s own accounting, up to 20 percent of Lyme patients experience persistent symptoms even after antibiotics, a debilitating aftermath researchers now group under Lyme infection-associated chronic conditions.

A disease left in the background

For Pam Long, the federal attention is overdue. A West Point graduate and former captain in the U.S. Army Medical Service Corps who now works as a military director for Health Freedom Defense, Long has tracked tick-borne illness for years, and she told listeners of The Kim Monson Show, appearing June 22 in an interview with guest host Yvonne Paez, that the disease has been treated as an afterthought.

“This has really been a neglected public health issue,” Long said. “You never hear your public health departments talking about it or any type of campaigns for awareness.” She argued that the medical community has spent decades dismissing chronic Lyme, “almost denying that it’s real,” and welcomed a dedicated section at HHS as a sign that the posture is changing.

The stakes are personal for her. “My son had Lyme disease,” Long said. “It is very difficult to treat.” That experience, she said, is the kind that turns a casual outdoors family into a diligent one.

Prevention for tick season

Long used much of her time on the air to walk listeners through prevention, the part of the equation that does not wait on a federal program. Coloradans spend their summers outdoors, she noted, and a few habits sharply cut the risk of a bite.

Cover up on the trail, she said: long sleeves, pants tucked into socks, closed shoes, and light colors that make a crawling tick easy to spot. Walk in the center of the path instead of brushing against foliage and tall grass where ticks wait. After a hike or a camping trip, check thoroughly, including warm creases like the armpits and groin and exposed spots like behind the ears, the back of the neck, and the hairline, and check the dog as well.

If a tick is attached, remove it immediately, Long advised. She pointed to inexpensive removal tools, sold as tick twisters and tick keys, that lift out the whole tick rather than leaving the head behind, and she suggested saving the tick in a sealed bag so it can be tested later if symptoms develop. Anyone who develops a rash, fever, body aches, or flu-like symptoms in the days or weeks after a bite should seek medical attention and ask about testing for Lyme antibodies, she said.

Long said she would publish her full prevention guidance, including images of ticks and the telltale bull’s-eye rash, in the Kim Monson newsletter, and she urged anyone with a lingering, undiagnosed illness to look at the new HHS Lyme resources.