Reps. Chris Smith (R-NJ) and Collin Peterson (D-MN), the co-chairs of the Congressional Lyme Disease Caucus, are pushing bipartisan legislation to create a new national strategy for Lyme disease and strengthen treatment and prevention of Lyme and other tick-borne diseases during May, Lyme Disease Awareness Month.
“So many patients suffer from the debilitating effects of this disease that persist for years, especially if not detected early, while being told that their illness does not exist,” Rep. Smith said. “The time is now to unify our efforts in treating and preventing Lyme disease and make sure they have all the needed federal funding and support that is necessary. Everyone must be involved in this collective effort, from doctors to federal officials to patients and their families.”
The new legislation, HR 5878, the National Tick-Borne Diseases Control and Accountability Act, which was introduced on Friday, 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. The office would be charged with ensuring collaboration between the various departmental efforts.
HR 5878 also calls for a new national strategy on tick-borne diseases, and requires the HHS Secretary to report to Congress on federal efforts to diagnose and treat Lyme and on how best to foster collaboration between federal tick-borne disease programs.
“Furthermore, we must remember that the disease is vastly underreported,” Smith said. “There are more than 30,000 reported cases of Lyme each year, but the number of diagnoses is likely around 300,000 according to research cited by the Centers for Disease Control (CDC).”
New Jersey in 2017 had its highest number of reported cases of Lyme—5,092—since the year 2000. Monmouth County had the third-highest number of reported cases of any county in New Jersey with 550 cases reported.
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 HHS Tick-Borne Disease Working Group. that convened in December 2017, and 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 the 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.”
HR 5878 also promotes coordination of federal tick-borne disease activities with the HHS Working Group, which is made up of Lyme disease experts like government officials, doctors, researchers, and patients and patient advocates, like Ms. Smith.
The idea of the 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.
The 21st Century Cures Act, which passed Congress with Smith’s support and was signed into law in 2016, created a group similar to Smith’s proposed working group, the HHS Tick-Borne Disease Working Group. Smith has a long history of advocacy for patients with Lyme disease, having fought for more funding of research and awareness of Lyme disease and other tick-borne diseases.
Also in the bill, the HHS Secretary must act to support better and expanded research on tick-borne diseases and the improvement of diagnostic testing, and promote education and public awareness of tick-borne diseases as well as of the expanding threat of Bartonella infection.