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Congressional Lyme Caucus Unveils Historic Legislation as Tick-Borne Threats Increase

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New bipartisan legislation to create a national strategy to fight Lyme Disease and to strengthen treatment and prevention of Lyme and other tick-borne diseases could help hundreds of thousands suffering from the disease and safeguard others from contracting Lyme. 

The new legislation, the National Tick-Borne Diseases Control and Accountability Act, is authored by Rep. Chris Smith (R-NJ) and cosponsored by Rep. Collin Peterson (D-MN), the co-chairs of the Congressional Lyme Disease Caucus. It creates a whole new structure, the Office of Oversight and Coordination for Tick-Borne Disease, to oversee efforts by the U.S. Department of Health and Human Services (HHS) to prevent and treat Lyme Disease and other tick-borne diseases.

May is Lyme Disease Awareness Month, and the legislation also comes on the heels of recent reports of a new “longhorned tick” from East Asia that has been found in several counties in New Jersey and has survived the winter months there.

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Among other key provisions of the National Tick-Borne Diseases Control and Accountability Act, it:

  • Establishes the Office of Oversight and Coordination for Tick-Borne Diseases (TBD Office)
  • Calls for the creation of a national strategy on Lyme Disease and other tick-borne diseases, to be submitted to Congress by the HHS Secretary and to be overseen and updated by the TBD Office. The strategy would include analysis of federally-funded tick-borne disease programs, and strategies to better treat and prevent Lyme Disease, improve patient outcomes, and enhance collaboration among federal agencies in fighting tick-borne diseases
  • Includes the input of the HHS Tick-Borne Disease Working Group in biennial reports to Congress on tick-borne diseases. The working group is made up of Lyme Disease experts like government officials, doctors, researchers, and patients and patient advocates
  • Requires the HHS Secretary to support better and expanded research on tick-borne diseases, work for the improvement of diagnostic tests and vaccines, and promote public education and awareness initiatives on Lyme and other tick-borne diseases
  • Calls for the Secretary to mandate research and monitoring of bartonellosis, involve additional centers at the National Institutes of Health (NIH) in tick-borne disease research, obtain surveillance data of tick-borne diseases from community health centers and Indian Health Clinics, and collect demographics and experiences of patients

“Lyme Disease is occurring everywhere and we must double down with federal support and leadership,” said Rep. Chris Smith who has led the effort to bring more attention and funding for Lyme Disease patients and treatment in Congress since 1998. “New Jersey in 2017 saw the highest number of reported cases of Lyme—5,092—since the year 2000. Monmouth County in my district had the third-highest number—550—of reported cases among counties in the state. And we must remember that the nationwide number of patients with Lyme Disease is probably much higher, as the CDC acknowledges it is often underreported.”

Pat Smith, a Wall, N.J. resident and president of the Lyme Disease Association (LDA) based in Ocean County, N.J., is a member of the new federal Tick-Borne Disease Working Group run by the U.S. Department of Health and Human Services, and she is a co-chair of its Disease Vectors, Surveillance and Prevention subcommittee. A nationally-known expert on Lyme Disease, Ms. Smith said the creation of a new national strategy for treating and preventing Lyme Disease was “critical.”

“The need for this comprehensive national strategy for Lyme and tick-borne diseases legislation is critical as Lyme case numbers continue to rise and constituted 82 percent of all tick-borne disease reported from 2004-2016,” she said.

“The number of tick-borne diseases has increased, with around 20 currently in the U.S., and tick populations have exploded, including the introduction of an invasive species of tick from Asia which now appears to be established in New Jersey,” she said. “There needs to be a central location in government which can direct the battle against this Lyme & tick-borne disease epidemic.”

The idea of the HHS Tick-Borne Disease Working Group was first included in Rep. Smith’s Lyme Disease Initiative of 1998 to provide for a multi-year blueprint for the federal government to fight and treat Lyme Disease. In 2011, Smith introduced another measure, HR 2557, to create the Tick-Borne Diseases Advisory Committee.  A modified version of Smith’s proposal was included in the 21st Century Cures Act, which was signed into law in 2016.  Smith said a continued and stronger effort is needed in light of the ongoing and expanding threat.

“Progress has been made in the fight against Lyme, but accurate diagnosis is still difficult and there is still so much to learn about this debilitating disease,” Rep. Smith said. 

“To move forward on treatment we must first ensure that our efforts are coordinated as well as possible and involve everyone—health officials, doctors, patients and patient advocates—in the process. The time is now for a new national strategy on Lyme Disease.”

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