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Collins, Smith’s Bill to Combat Lyme and Other Tick-Borne Diseases Headed to President’s Desk to be Signed into Law

Washington, D.C.— U.S. Senators Susan Collins (R-ME) and Tina Smith (D-MN) announced that legislation they authored to improve research, prevention, diagnostics, and treatment for tick-borne diseases passed the Senate today as part of the appropriations package.  The legislation now heads to the President’s desk to be signed into law.


The Kay Hagan Tick Act unites the effort to confront the alarming public health threat posed by Lyme disease and other tick-borne diseases, which have risen exponentially from approximately 30,000 cases in 2003 to an estimated 450,000 last year.  Senators Collins and Smith renamed the bill in honor of former Senator Kay Hagan, who passed away on October 28th, 2019, due to complications from the tick-borne disease known as the Powassan virus.


In Maine alone, there were approximately 1,400 new cases of Lyme disease in 2018, a sharp increase from the 752 cases in 2010.  Far too many Americans with Lyme disease experience a complex diagnostic odyssey that takes months or even years, while suffering severe and debilitating symptoms.  In addition to the physical and emotional toll that Lyme disease takes, it is also expensive.  Medical costs of Lyme disease are estimated at $1.3 billion per year. When accounting for indirect medical costs, including loss of work, the annual costs balloon to $75 billion per year.


“Congress’ passage of the Tick Act is a major victory for the hundreds of thousands of Americans who contract Lyme and other tick-borne illnesses each year.  I am grateful for the countless advocates who shared their struggles with these diseases and conveyed the urgent need for this comprehensive, bipartisan bill,” said Senator Collins.  “With a national effort the Tick Act would establish, we can slow the spread of these devastating tick-borne illnesses and protect our health.”


“I’ve said that for the sake of Americans’ health and well-being, we need to get this bill over the finish line,” said Senator Smith. “The number of Lyme disease cases is on the rise, and we need to address this so Minnesotans can continue to enjoy spending time outside exploring our parks, swimming and boating in our lakes, and hiking in our forests safely.”


“I was misdiagnosed by 23 doctors and specialists to the tune of $250,000 before getting an official diagnosis and proper treatment,” said Paula Jackson Jones, President and Co-Founder of Midcoast Lyme Disease Support & Education.  “Enacting the Tick Act that Senator Collins introduced will provide a lifeline not only to patients but to medical providers. With funding available for research and education, we can get medical providers on the same page not only with improved diagnostic tools but better, more effective treatment options for their patients. With the Tick Act, and Senator Collins’ support in Washington, we can stem the growing threat of tick-borne disease.”


"Lyme is a frustrating and debilitating disease, but it's a problem we can solve," said Bonnie Crater, co-founder and board member at Center for Lyme Action.  "What is needed is dedicated and sustained effort by the federal government to address this growing public health threat.  Senators Collins and Smith’s legislation, the Kay Hagan Tick Act is a wonderful first step and is supported by more than 150 Lyme foundations and associations around the United States." 


“Lyme disease and other tick-borne pathogens continue to have significant impacts on public health in Maine and throughout much of the United States. The advancement of The Kay Hagan Tick Act signals a commitment from Congress to tackle the threats associated with ticks and to dedicate resources to managing tick-borne diseases on a national scale. This coordinated approach, focusing on research and education, will be critical in reducing the severe health and financial burdens associated with tick-borne diseases,” said James F. Dill, PhD, Pest Management Specialist and Coordinator, Diagnostic and Research Lab at the University of Maine Cooperative Extension.


“All of us at Global Lyme Alliance extend our heartfelt thanks to Senators Susan Collins and Tina Smith for their dedication to changing the outcome for suffering patients. It has been a long-haul for many of them, especially the kids who were forced to grow up with this poorly diagnosed and treated medical illness. Patients need real solutions, which the Kay Hagan Tick Act will bring!” said Scott Santarella, CEO, Global Lyme Alliance.


“My life was forever changed at age 6 when I was bitten by a tick the summer after first grade,” said 15-year-old Olivia Goodreau, founder of the LivLyme Foundation and TickTracker.  "Children are especially vulnerable to tick borne illnesses, but everyone is at risk. I am so grateful to Senator Susan Collins, her staff, the amazing Lyme advocates, and all those who’ve fought for passage of the Kay Hagan Tick Act. It will save lives by raising awareness and supporting early detection, diagnosis and treatment.”


“I was diagnosed with Lyme Disease the summer of 1986 when I was 14-years-old. Since then, my life has never been the same. I developed Bell’s palsy that paralyzed half my face, a heart murmur, and many other symptoms.  To this day, I continue to fight this disease,” said Heather Hearst, Founder of Maine-based Project Lyme and Advisory Board Member of the Bay Area Lyme Foundation.  “Over the years, I have watched Lyme grow from something that was rare and unknown to a threat that has affected thousands of Mainers, many of whom now suffer from chronic health issues. With the Kay Hagan Tick Act, we can finally put an end to the suffering and slow the spread of tick-borne diseases. I am so grateful to Senator Collins, Senator Smith, and the bipartisan coalition that worked together to make this a national priority”


Using a three-pronged approach, the Tick Act would:


1.      Require the Department of Health and Human Services (HHS) to develop a National Strategy.  This would help expand research, improve testing and treatment, and coordinate common efforts across federal agencies including with DOD, USDA, EPA, the VA, and the Departments of Interior and Homeland Security


2.      Reauthorize Regional Centers of Excellence in Vector-Borne Disease for five years at $10 million per year.  Funding for these centers, which was allotted in 2017, expires in 2021.  These Centers have led the scientific response against tick-borne diseases, which now make up 75 percent of vector-borne diseases in the U.S.  There are five centers located at universities in New York, California, Florida, Texas, and Wisconsin. 


3.      Authorize CDC Grants at $20 million per year that would be awarded to State Health Departments to improve data collection and analysis, support early detection and diagnosis, improve treatment, and raise awareness.  These awards would help states build a public health infrastructure for Lyme and other tick and vector-borne diseases and amplify their initiatives through public-private partnerships.   


In September, Senator Collins, the Chairman of the Aging Committee, convened a field hearing at the University of Maine Cooperative Extension Diagnostic and Research Laboratory Tick Lab in Orono, where experts and witnesses discussed the critical need to pass the Tick Act.


In 2016, Congress took a critical step forward with the enactment of the 21st Century Cures Act, which created a federal Tick-Borne Diseases Working Group.  This Working Group released its first report in November 2018, which created several recommendations for next steps. With the findings of this report in mind, this legislation puts key recommendations into practice.


The Tick Act is supported by more than 155 organizations, including the Center for Lyme Action, the Entomological Society of America, National Association of Vector-Borne Disease Control Officials, the National Association of County and City Health Officials, Midcoast Lyme Disease Support & Education Organization in Maine, the Northeast Regional Center for Excellence in Vector Borne Diseases, the LivLyme Foundation, the Global Lyme Alliance, and The Avril Lavigne Foundation.


Senators Collins and Smith’s Tick Act was cosponsored by 32 Senators including Senators Shelley Moore Capito (R-WV), Richard Blumenthal (D-CT), Cindy Hyde-Smith (R- MS), Christopher Murphy (D-CT), John Boozman (R-AR), Margaret Hassan (D-NH), Angus King (I-ME), Mike Braun (R-IN), Bernie Sanders (I-VT), Cory Gardner (R-CO), Diane Feinstein (D-CA), Thom Tillis (R- NC), Elizabeth Warren (D-MA), Richard Burr (R-NC), Chuck Schumer (D-NY), Johnny Isakson (R-GA), Patty Murray (D-WA), Kirsten Gillibrand (D-NY), Tammy Baldwin (D-WI), Jeanne Shaheen (D-NH), Bob Menendez (D-NJ), Josh Hawley (R-MO), Tom Cotton (R-AR), Debbie Stabenow (D-MI), Bill Cassidy (R-LA), Bob Casey (D-PA), Michael Bennet (D-CO), Gary Peters (D-MI), and Chris Van Hollen (D-MD).