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Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com
Citizen-Scientist Study is First to Find Ticks Capable of Carrying Lyme Disease in 83 U.S. Counties Where Previously Undetected
Study Validates Citizen Participation as Viable Method for Health Agencies to Evaluate Tick-borne Disease Risk
PORTOLA VALLEY, CA, July 12, 2018 — Bay Area Lyme Foundation, a leading nonprofit funder of innovative Lyme disease research in the U.S., today announced the results of the first citizen-scientist study to evaluate the prevalence of disease-carrying ticks throughout the United States. Conducted through a partnership with Northern Arizona University and Colorado State University and published in the peer-review journal PLOS ONE, the study is based on a massive sample of more than 16,000 ticks collected from 49 U.S. states and Puerto Rico. The study found ticks capable of carrying Lyme and other tick-borne diseases in 83 counties (in 24 states) where these ticks had not been previously recorded. The program received a six-fold increase in tick submissions over initial estimates, representing unprecedented national coordination of a ‘citizen science’ effort and diagnostic investigation.
“Identifying geographic patterns of tick-human contact provides valuable insight that may help public health officials, patients and physicians become more vigilant about Lyme disease, increasing early diagnosis,” stated Linda Giampa, executive director at Bay Area Lyme Foundation. “Based on these findings, it is critical that residents throughout the country take precautions and know the symptoms of tick-borne infections, even in areas where ticks have not previously been shown to cause disease.”
Lyme disease is a nationally notifiable disease, recognized and tracked by the federal government Centers for Disease Control and Prevention (CDC) for surveillance purposes. Surveillance data provides important information for assessing public health risks and allocating research dollars. Per the CDC, “The goal of Lyme disease surveillance is not to capture every case, but to systematically gather and analyze public health data in a way that enables public health officials to look for trends and take actions to reduce disease and improve public health.” However, these statistics have important implications for individual patients as well.
In this post, Bay Area Lyme Research Grant Director and Advisory Board Member Wendy Adams discusses some important changes to the CDC definitions of Lyme disease and some concerning implications for patients in the state of California.
In January, the Centers for Disease Control and Prevention (CDC) in Atlanta published an updated Lyme Disease (Borrelia burgdorferi) 2017 Case Definition. Lyme disease case definitions have been published since 1995, and the previous definition was published in 2011. The CDC actually is not responsible for this definition; instead it is the Council of State and Territorial Epidemiologists (CSTE) that is responsible for Lyme disease surveillance. Each state has its own State Epidemiologist (see info about CA here). Despite being a federal agency, the CDC can offer input on these definitions but the CSTE is not obligated to accept those suggestions.
The case definition for Lyme disease is only intended to be used to determine cases for surveillance purposes and not to represent the full incidence of Lyme in a given area. However, this subtlety is often confusing for doctors who see these low case numbers as proof that they do not need to consider a Lyme diagnosis in CA. The low numbers also are convenient for insurance companies who inappropriately use this narrow definition as diagnostic criteria to deny coverage for patients whose cases don’t meet the definition.
Dr. Ben Beard, PhD, Chief Bacterial Diseases Branch at the CDC, visited with Bay Area Lyme and invited guests as part of the foundation’s ongoing speaker series. This donor-sponsored forum brings together researchers and other experts in an intimate forum for topical discussions with community members. Past events have included Emerging Leader Award winners, clinicians, and patient advocates.
The next event, on Wednesday, March 2, will feature Dr. Christine Green, Director of Education for ILADS, and Allie Cashel, author of Suffering the Silence: Chronic Lyme Disease in an Age of Denial.
For more information, see Speaker Series.
As Chief of the CDC’s Bacterial Diseases Branch, Division of Vector-Borne Diseases in Fort Collins, Colorado, Dr. Beard coordinates CDC’s programs on Lyme disease, plague, and tularemia. His scientific interests include public health and the biology, ecology, and genetics of insect-borne diseases and vectors. More recently, he has been extensively involved in the CDC’s work to understand and mitigate the potential impact of climate variability and change on infectious disease ecology. He shared the CDC’s concerns about the expanding disease burden and distribution of Lyme and affirmed the importance of attracting new research interest and efforts focused on Lyme disease and other tick-borne infections.