On her last day as an HHS Working Group (WG) member, after serving 2 terms, Lyme Disease Association President Pat Smith addressed at the Dec. 2 online WG meeting, her concerns about the procedures of the 2019-2020 Working Group and her concern that the interests of patients were not served by the group. Read below […]
This section contains information on legislation that has been introduced and/or passed by the federal government. It includes sections that contain the position the Lyme Disease Association (LDA) has taken on various bills, if any, and information on how to contact your legislator; and what you can do to help specific laws be passed or defeated. Additionally, there is a section on various government departments. From time to time, the LDA will post articles from the departments/agencies in these sections that pertain to Lyme disease that might be of interest or importance to the public, including policies being considered or adopted.
It is important for the LDA to take a lead role in forming relationships with all levels of government. Laws and policy decisions often affect how Lyme disease is viewed by the public and physicians, and LDA needs to clearly articulate the problems which are created by government actions or which can be rectified by government actions. Additionally, we need to ensure that the information presented to government officials is accurate and supported by science.
BACKGROUND: The 17th Working Group Meeting turned out to be a referendum on the Patient Chapter of the upcoming 2020 Working Group report. The previous 9 months of the WG had seen that chapter content consistently eroded by comments from just a few WG members which forced shortening of chapter, removal of material, rewriting of […]
A review article has just been published by the Journal of Medical Entomology describing the ticks and tick-borne diseases of Colorado which includes tick-host associations, geographic distributions and medical/veterinary importance. In this article, 28 species of endemic ticks in Colorado are described as well as an additional 5 species that are occasionally detected, 13 exotic […]
TBDWG 16 – Fight Continues for Patient Relief: Get Patients Diagnosed & Chronic/Persistent Lyme Recognized
The 16th meeting of the Federal Tick-Borne Disease Working Group (WG) took place 10.27.20. Public commenters urged the WG to acknowledge and act on the changes needed for patient relief. In review of report chapters, contentious arguments continued, with Pat Smith again advocating passionately on behalf of chronic Lyme patients. (Below items are not in […]
The results of a study to collect ticks from Pike County, Pennsylvania, conducted by the Northeast Wildlife DNA Laboratory of East Stroudsburg University included real time PCR analysis of ticks countywide. The county was divided into 9 grids, each with several collection sites. The sites were based on use by community members and presence of […]
The U.S. Department of Health and Human Services (HHS) and the Steven & Alexandra Cohen Foundation announced a
new $25 million-dollar, public-private partnership – the LymeX Innovation Accelerator (LymeX).
The HHS website states, “Our LymeX mission is to strategically advance Lyme and tickborne disease solutions in direct collaboration with Lyme patients, patient advocates, and diverse stakeholders across academia, nonprofits, industry, and government.”
The recent 2-day virtual meeting of the Federal Tick-Borne Disease Working Group (WG) on Day 1 was more subdued than prior meetings , but Day 2 again brought forth an effort to minimize the patient access to care chapter and chronic Lyme. Day 1 September 15, 2020 Patients and patient advocates delivered verbal comments, including […]
First announced at the HHS Tick-Borne Disease Working Group’s (TBDWG) September 22 meeting, the Centers for Disease Control (CDC), in a Capitol Hill Announcement, presented plans to join with five federal departments and the Environmental Protection Agency in developing the National Public Health Framework for the Prevention and Control of Vector-Borne Diseases in Humans (Framework). […]
West Virginia University researchers received a $1.9 million grant from the National Institute of Allergy and Infectious Diseases, an institution of the National Institute of Health (NIH), for a vaccine to prevent humans from contracting Lyme disease. Mariette Barbier, assistant professor in the School of Medicine’s Department of Microbiology, Immunology and Cell Biology, is leading […]
The upcoming meeting of the HHS Working Group on Sept. 15 may be your last chance to influence language on persistent/chronic Lyme. At the last meeting, several members of the Working Group (WG) worked hard to have language related to patients with persistent Lyme symptoms removed from the WG report which will go to Congress at end of year.