Tick-borne disease is on the rise across the nation, and lawmakers are pushing to invest more this year in diagnostics and research to help the hundreds of thousands of Americans diagnosed with Lyme disease each year.

Lyme disease is the most common vector-borne illness in the United States, appearing in all 50 states and the District of Columbia. Roughly 476,000 Americans are diagnosed with Lyme every year, according to the Centers for Disease Control and Prevention. The number of actual infections is likely higher, experts say, as many infected people do not receive a test and Lyme disease tests are often inaccurate.

Although underdiagnosed, Lyme costs the U.S. health care system more than $1.3 billion in direct U.S. medical costs, according to estimates, and tens of billions more in indirect medical costs.

“People know somebody who has Lyme, or they have constituents that have come to talk about it, and they all have the same story: It’s very difficult to diagnose and very difficult to treat,” Rep. Josh Gottheimer, a Congressional Lyme Caucus member, said in describing a recent groundswell of Capitol Hill interest.

The New Jersey Democrat co-sponsored a bill by his home-state Republican colleague Christopher H. Smith this year that aims to boost funding for research and another Smith bill to help children who are disabled as a result of the disease. He also backs New York Democrat Antonio Delgado‘s bill to raise funds through a postal stamp supporting federal tick-borne disease research. He said lawmakers hope the legislation will ride in an upcoming reconciliation or omnibus package.

More patients than ever are coming in with Lyme disease symptoms as the tick population rises, said Luis Marcos, director for the Infectious Diseases Fellowship Program at Stony Brook Medicine.

The Environmental Protection Agency recently found a correlation between the rise in Lyme disease in the U.S. and climate change, as deer ticks thrive in warm, humid environments. Shorter winters don’t help because that expands the amount of time humans can potentially be exposed to infected ticks.

The insects, sometimes as small as a poppy seed, latch on to human or animal hosts and inject their disease-causing venom. If a bite is caught early, tick-borne diseases can be treated with simple antibiotics. But left untreated, patients can develop long-term symptoms as the infection spreads to the joints, heart and nervous system. There is no standardized treatment for chronic Lyme and no vaccine to protect humans from transmission. Testing isn’t always reliable.

Researchers say more accurate testing tools and prevention methods are in sight, but the federal government needs to invest more money to achieve progress. Advocates say it’s a public health crisis that shouldn’t be ignored.

Researchers hope the flurry of research and interest in infectious diseases because of the COVID-19 pandemic will generate public concern about tick-related diseases. As it does with COVID-19, the National Institute of Allergy and Infectious Diseases has jurisdiction over Lyme disease and other vector-borne disease research.

“I hope that people now understand how bad an infectious agent can be. And I know we classified COVID-19 as a pandemic, but we’re heading towards a pandemic with Lyme disease,” said Eva Sapi, a Lyme disease researcher at the University of New Haven in Connecticut. “This is huge.”

Call for federal funding

Congress appropriated a record $91 million for Lyme disease research in 2021, and lawmakers and advocates are hoping for more this year.

Sens. Susan Collins, R-Maine, and Tina Smith, D-Minn., led a group of 12 senators urging the Labor-HHS-Education Appropriations Subcommittee to prioritize funding for research and prevention of Lyme and other tick-borne diseases in the fiscal 2022 spending bill.

Collins and Smith led the passage of legislation named for former Sen. Kay Hagan, D-N.C., that was designed to bolster CDC efforts to improve research, prevention, diagnostics and treatment of tick-borne disease as part of the 2020 appropriations law. Hagan died at age 66 in 2019 because of complications from the tick-borne Powassan virus. The senators argue that their legislation needs full funding, $30 million per year over five years through the CDC, to properly equip states to fight the rise in Lyme and other tick-borne diseases.

“There are still many questions surrounding Lyme and other tick-borne diseases due to significant gaps in funding and research,” Smith, Collins and the other 10 senators wrote to Senate Appropriations Committee leaders in a July 8 letter.

The cost of not addressing Lyme disease is too high, five Democratic senators wrote in a similar letter to Labor-HHS-Education Appropriations Subcommittee leaders in June.

Instances of Lyme have increased more than 300 percent in Northeastern states and by 250 percent in northern and central states over the past 25 years.

“Despite the rising incidence and costs of Lyme disease and other tick-borne illnesses like Powassan, research into strategies for preventing, diagnosing, treating, and surveilling these diseases has historically been underfunded,” wrote the Democratic senators, including two who signed the Collins letter, Richard Blumenthal of Connecticut and Kirsten Gillibrand of New York. The others were Christopher S. Murphy of Connecticut, Bob Casey of Pennsylvania and Edward J. Markey of Massachusetts.

The draft House Labor-HHS-Education appropriations bill, released Sunday and set for committee markup Thursday, would provide nearly $6.6 billion for the National Institute of Allergy and Infectious Diseases and $10.6 billion for the CDC. House appropriators plan to release the report language Wednesday.

Knowledge gaps

Researchers and advocates say the lack of funding for tick-borne diseases contributes to major knowledge gaps surrounding the disease.

Some common tests for Lyme disease are less than 40 percent accurate, Bonnie Crater, co-founder of the Center for Lyme Action, explained. Unlike many other diagnostic tests, the test for Lyme disease does not detect the infection itself but checks for the presence of antibodies — which take weeks to develop, so the test can miss early infections. A more accurate test could help quickly identify the disease and its spread.

If the disease is identified early on, either through testing or the telltale bull’s-eye rash that can occur after a bite from an infected tick, common antibiotics can cure most patients. But some patients don’t know they’re infected until long after the disease has spread through their nervous systems. At that point, things get more complicated.

There’s no standard protocol to treat long-term Lyme disease, and some doctors will try a variety of treatments.

“Nobody really knows how to treat it,” Marcos said of chronic Lyme disease. “That’s exactly where the research needs to be done.”

HHS Assistant Secretary for Health Rachel Levine spoke about the links between climate change and Lyme disease on Capitol Hill in June as part of the Center for Lyme Action’s Congressional Virtual Lyme Series.

“The growth of Lyme disease and other tick-borne illnesses is alarming,” Levine said at the June 22 event while touting the agency’s LymeX project, a $25 million public-private partnership to accelerate Lyme research and innovation.

The LymeX Innovation accelerator currently focuses on crowdsourcing patient-driven cures and innovations and boosting disease awareness, explained Kristen Honey, chief data scientist and senior adviser at the HHS Office of the Assistant Secretary for Health.

Later in 2021, HHS plans to host a LymeX Diagnostic Moonshot, a series of contests designed to inspire emerging technologies that might improve Lyme disease diagnostics.

Researchers and advocates say they are hopeful for new tools and information to combat the growing threat despite the lack of answers so far.

“We’re at the very beginning of trying to build government support to try to find a good diagnostic and therapy for Lyme disease. So I believe that we were starting at quite a low level a few years ago, and it’s just going to grow over time,” Crater said.