Boothbay (Maine) Register

LYME TIME:  We Did It!

By Paula Jackson Jones

Last week, former Senator Kay Hagan (N.C.) passed away from complications due to the tick-borne disease known as the Powassan virus. That same week, the Senate Health Committee voted unanimously to advance legislation introduced by U.S. Senators Susan Collins (R-ME) and Tina Smith (D-MN) to improve research, prevention, diagnostics, and treatment for tick-borne diseases. Their bill now heads to the floor for consideration by the full Senate.

Respectfully renamed the Kay Hagan TICK Act bill, this 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. Senator Collins renamed the bill in honor of former Senator Hagan, who passed away on Oct. 28, due to complications from the Powassan virus. This same tick-borne disease took the life of Maine resident Lyn Snow in 2013.

In Maine alone, there were approximately 1,400 new cases of Lyme disease in 2018, 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, per a study done by John Hopkins University.

“I want to express my condolences to the family of our former colleague and friend, Senator Kay Hagan, who passed away this week from complications of the Powassan virus. It is the same tick-borne disease that took the life of Maine artist Lyn Snow in 2013,” said Senator Collins. “Tick-borne diseases like Lyme have become a major public health concern, with the incidence exploding over the past 15 years. The Tick Act takes a comprehensive approach to address Lyme and other tick and vector-borne diseases. I am pleased that our bipartisan bill was approved by the Senate Health Committee today, and I urge all of my colleagues to support this important legislation to reverse this burgeoning public health crisis.”

“Minnesotans enjoy spending time outside exploring our state parks, swimming and boating in our lakes, and hiking in our forests,” said Senator Smith. “Unfortunately, the number of Lyme disease cases in the state — and states across the country — is on the rise. I’m glad that our bipartisan bill to address this problem cleared the Senate Health Committee today, bringing it one step closer to becoming law. For the sake of Americans’ health and well-being, we need to keep moving this bill forward.”

“Several of the bills we are moving forward today will help us better understand and address the public health challenges that we face to keep our families safe, like the Tick Act — which I want to thank Senator Collins and Senator Smith,” Senator Patty Murray, the Ranking Member of the Health Committee, said at the hearing. “They have been great leaders on this, and this is a bill, as they will describe to you, that will create a national strategy and take other important steps to address vector borne diseases like Lyme disease.”

“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. The Tick Act is a wonderful first step and is supported by more than 150 Lyme foundations and associations around the United States including 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, and the LivLyme Foundation." Last 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.

Senators Collins and Smith’s Tick Act is cosponsored by Richard Blumenthal (D-CT), John Boozman (R-AR), Senator Mike Braun (R-IN), Shelley Moore Capito (R-WV), Maggie Hassan (D-NH), Cindy Hyde-Smith (R-MS), Senators Angus King (I-ME), Chris Murphy (D-CT), and Bernie Sanders (I-VT) and the support continues to grow.

CALL TO ACTION: If you have friends and family in other U.S. states, please urge them to contact their U.S. Senator in support of this bill. Ticks do not discriminate therefore there is a geographical widespread need for medical education and patient resources in every state. You can read more about this bill on our website and Facebook page.

Paula is the president of the MLDSE, the 2018 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