Last week, I wrote about working closely with Senator Collins’s staff and her strong interest in taking up the fight against Lyme and tick-borne disease that her people of Maine were facing. I eluded to the fact that she was prepared to do something about it and here it is.

In a bipartisan effort to improve research, prevention, diagnostics, and treatment for tick-borne diseases, U.S. Senators Susan Collins (R-ME) and Tina Smith (D-MN) introduced the Ticks: Identify, Control, and Knockout (TICK) Act.  Senator Angus King (I-ME) is an original co-sponsor. Last Thursday, Senator Collins presented the bill on the floor before the U.S. Senate and proposed, “To knock out Lyme and other tick-borne diseases, we need a unified approach with leadership at the federal level and resources at the local level. These diseases present grave risks to our public health and serious harm to our families and communities.  The sooner we acknowledge these risks and coordinate our effort to overcome them, the better for all of us.  The TICK Act does just that by applying a three-pronged public health approach to address Lyme and other vector-borne diseases, and I urge our colleagues to join us in supporting this important bill.”

The bill would:

–Establish an Office of Oversight and Coordination for Vector-Borne Disease, at HHS. The office would oversee federal efforts to prevent and treat Lyme and other tick and vector-borne diseases, mandate expanded research on these diseases, and improve testing, treatment affordability, and public awareness. It would also coordinate six key agencies: DOD, USDA, EPA, Interior, Homeland Security, and develop and maintain a National Plan.

–Reauthorize Regional Centers of Excellence in Vector-Borne Disease for five-years, which were established in 2017 through $48M of supplemental funding from Congress to respond to Zika. This funding expires in 2021, and these Centers have led the response against tick-borne diseases, which now make up 75 percent of vector-borne disease in the U.S.  The Centers are charged to: 1) build collaboration between academia and public health agencies for surveillance, prevention and response to threats; 2) train public-health entomologists to deal with vector-borne disease; and 3) conduct applied research to develop and validate prevention and control tools and methods, and to anticipate and respond to outbreaks. It would authorize $10M for each of FY 2021 through FY 2026.

–Authorize Cooperative Agreements with CDC 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 vector-borne diseases and amplify their initiatives through public-private partnerships. Would authorize $20 M for these cooperative agreements for each of FY 2021 through FY 2026.

I had spent a great deal of time with her staff, sharing my personal story and the journal that so many Mainers face and how hard it was to not only find help but afford it and have it covered by insurance. I was further honored to learn that Sen Collins incorporated my story into her speech and shared:

“Far too many Americans with Lyme disease experience a complex diagnostic odyssey that takes months or even years.  One of my constituents, Paula Jackson Jones from Damariscotta, Maine, shared with me her harrowing tale that took two years, scores of tests, and 23 different physicians before finally finding out that she had Lyme disease. Her journey started one afternoon, ten years ago, after raking leaves in her backyard.  A week later, unusual symptoms began:  anxiety attacks, pain, muscle spasms, and fatigue.  These symptoms became debilitating.  Before receiving the correct diagnosis, she was diagnosed incorrectly with multiple sclerosis, Parkinson’s, and other diseases. Once she received the proper diagnosis and treatment, she founded Midcoast Lyme Disease Support & Education, a nonprofit that raises awareness about Lyme.  She told me, “this has been a 10-year crusade for me with the first five years fighting for my life and the latter, fighting on behalf of others.

“In addition to the physical and emotional toll that Lyme disease takes, it is also expensive.  Paula is still paying off over $250,000 worth of medical bills she has incurred. 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. “

In her press release, Sen Collins shared over the past decade, cases of Lyme disease and other tick-borne diseases have risen exponentially, from approximately 30,000 in 2003 to an estimated 450,000 last year. In Maine, last year, there were approximately 1,400 new cases of Lyme disease, sharply increased 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.

“Maine summers bring sunshine, hiking, and fresh blueberries – but unfortunately, they also bring ticks. As the weather warms up, our exposure to these parasites increases,” said Senator King.  “This leaves us more vulnerable to the diseases they spread – especially Lyme disease, which has drastically climbed in recent years. We need a coordinated and aggressive response from all levels of government and the private sector to make a dent in the rapid rise of this disease. This legislation will keep Americans healthier, and that’s a cause worth working toward.”

[To watch Sen Collins’s presentation of the TICK Act bill to the US Senate, please visit our website].

Paula is the president of the MLDSE, the co-chair of the Access to Care Services and Patient Support subcommittee of the federal HHS Tick-borne Disease Working Group, the Maine-partner of the national Lyme Disease Association, member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at paula@mldse.org or visit www.mldse.org