The Challenges of Lyme Disease Reporting: Critical Consequences for California

Wendy AdamsLyme 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.

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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.

New National Lyme Disease Biobank Aims to Accelerate Lyme Disease Research by Making Lyme Patient Samples From the East Coast, West Coast and Midwest Available to Researchers

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Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

New National Lyme Disease Biobank Aims to Accelerate Lyme Disease Research by Making Lyme Patient Samples From the East Coast, West Coast, and Midwest Available to Researchers 

Qualified researchers now have one-stop access to patient samples from Long Island, San Francisco Bay Area, Martha’s Vineyard, and Marshfield, Wisc.

Portola Valley, Calif., January 24, 2017 – Bay Area Lyme Foundation, a national organization funding research to make Lyme disease easy to diagnose and simple to cure, announces the launch of the Lyme Disease Biobank, which is the first program to provide researchers with blood and urine samples from people with acute Lyme disease from multiple regions across the country, including the East Coast, West Coast and Upper Midwest.

Bay Area Lyme Foundation Highlights Growth of Scientific Lyme Community in 2016

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Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

Bay Area Lyme Foundation Highlights Growth of Scientific Lyme Community in 2016

Foundation demonstrates recruitment of new scientific talent through innovative programs

SILICON VALLEY, Calif., November 28, 2016—Bay Area Lyme Foundation, a leading public nonprofit funder of Lyme disease research in the US, today announced that the organization granted $1.75 million in 2016 for Lyme research and education. Over the year, the Foundation continued to demonstrate success in bringing new scientific talent to the fight against tick-borne diseases. The organization highlights the recipients of the 2016 grant cycle, outlines the benefits of the Foundation’s contributions to Lyme Innovation, and announces their national Lyme Disease Biobank.

New Pathogen Discovered By Researchers Who Discovered Lyme – But Was Not Reported

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Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

New Pathogen Discovered By Researchers Who Discovered Lyme – But Was Not Reported

Bay Area Lyme Foundation Responds to News Related to Initial Studies of Lyme Disease

Portola Valley, CA, October 12, 2016 – Bay Area Lyme Foundation, an organization dedicated to making Lyme disease easy to diagnose and simple to cure, is deeply disturbed by the news that researchers involved in the initial discoveries of Lyme disease omitted critical information related to additional bacteria that may have contributed to illness in early cases. This information was revealed in a story today in STAT News titled “The ‘Swiss Agent’: Long forgotten research unearths new mystery about Lyme disease.”

This new development clearly points to a critical need to reexamine much of the current orthodoxy in Lyme disease.

Bay Area Lyme Foundation Announces Winners of “Lyme Innovation” Hackathon at White House Event

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Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

Bay Area Lyme Foundation Announces Winners of “Lyme Innovation” Hackathon at White House Event

White House Acknowledges Contributions of Program Organizers
Toward Solving Challenges of Lyme Disease

(Cambridge, MA,) October 5, 2016 — As part of the White House Open Data Innovation Summit, Bay Area Lyme Foundation, collaborating with the Spaulding Rehabilitation Network’s Dean Center for Tick Borne Illness, Harvard Medical School Department of Physical Medicine and Rehabilitation, MIT Hacking Medicine, University of California, Berkeley, and the Veterans Affairs Center for Innovation, announces the winning teams of Lyme Innovation.  Lyme Innovation is the first ever Hackathon for Lyme disease, which provided a forum for more than 100 scientists, clinicians, researchers, entrepreneurs, and investors from a variety of disciplines to brainstorm solutions for this potentially devastating disease.

Bay Area Lyme Foundation Increases Annual ‘Emerging Leader Award’ Grants to $350,000 for Lyme Disease Research

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Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

Bay Area Lyme Foundation Increases Annual ‘Emerging Leader Award’ Grants to $350,000 for Lyme Disease Research

2017 additional award invites applications from Associate Professors through Full Professors

Silicon Valley, California, October 3, 2016 – Bay Area Lyme Foundation, supporter of research aimed at making Lyme disease easy to diagnose and simple to cure, announced today that it is beginning to accept applications for a new $250,000 grant award that has been added to its existing “Emerging Leader Award” portfolio of yearly funding.  Made available to researchers through the generosity of the Steven and Alexandra Cohen Foundation and the Laurel Foundation, the portfolio also includes the $100,000 “Emerging Leader Award” which has previously been granted to researchers from Harvard, Stanford, UCSF, NC State and Louisiana State University.

Bay Area Lyme Foundation Announces Finalists of “Lyme Innovation” Hackathon

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Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

Bay Area Lyme Foundation Announces Finalists of “Lyme Innovation” Hackathon

Event brings together research from other therapeutic areas and disciplines to collaborate in development of solutions

Cambridge, MA, June 24, 2016 – Bay Area Lyme Foundation, collaborating with the Spaulding Rehabilitation Network’s Dean Center for Tick Borne Illness, Harvard Medical School Department of Physical Medicine and Rehabilitation, MIT Hacking Medicine, University of California, Berkeley, and the Veterans Affairs Center for Innovation, today announced the five finalists of Lyme Innovation, the first ever Hackathon for Lyme disease.  More than 100 scientists, clinicians, researchers, entrepreneurs, and investors from several US states registered for this event to brainstorm solutions for Lyme disease, a potentially devastating condition newly infecting 329,000 people each year.

“Collaboration is the key to solving the myriad of challenges of Lyme disease, and we were excited to have the participation of so many researchers new to Lyme research,” said Wendy Adams, Science Committee, Bay Area Lyme Foundation.  “It has been exciting to see such a wide range of expertise and enthusiasm come together to focus on solutions for this serious disease.”

Bay Area Lyme Foundation Sponsors Massachusetts General Hospital Forum to Address Challenges of Lyme Disease

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Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

Bay Area Lyme Foundation Sponsors Massachusetts General Hospital Forum to Address Challenges of Lyme Disease

Researchers consider issues of persistence, and cardiac and neurological manifestations of Lyme disease, as well as the challenges of other emerging tick-borne diseases

Boston, MA, June 13, 2016 – Massachusetts General Hospital convened a national scientific conference, “Lyme Disease and Tick-Borne Illnesses: Diagnostics, Emerging Pathogens and Avenues for New Research,” was convened at Massachusetts General Hospital to educate and inspire collaboration toward a greater understanding of the of tick-borne diseases and how research should be focused. This conference, which was attended by academia, industry, and government, was supported by Bay Area Lyme Foundation. Lyme disease infects more than 329,000 people each year in the U.S., and there is currently no sufficiently reliable Lyme diagnostic test and there is no universally effective treatment for post-treatment Lyme disease.

American Ninja Warrior Elet Hall Educates about Lyme Disease Risks

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Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

American Ninja Warrior Elet Hall Educates about Lyme Disease Risks

Growing issue of Lyme disease in California prompts Association for Environmental and Outdoor Education (AEOE) to provide Lyme education at statewide conference

Silicon Valley, CA, May 9, 2016 — Bay Area Lyme Foundation, a leading non-profit funder and advocate of innovative Lyme disease research in the US, today announced that Elet Hall, ambassador for the Bay Area Lyme Foundation, and Jo Ellis, director, education outreach, Bay Area Lyme Foundation helped raise awareness about Lyme disease and tick-borne illnesses among California Association for Environmental and Outdoor Education (AEOE) conference attendees.  Attendees included individuals who work in museums, zoos, nature centers, and state and national parks as well as environmental and outdoor educators who help instill an understanding of nature to individuals of all ages, from California and neighboring states.