The CDC published, in the February edition of its “Emerging Infectious Diseases,” two new papers pertaining to Lyme disease case numbers. CDC indicates that the researchers found ~ 476,000 people are diagnosed with and treated for Lyme disease each year in the U.S. This is a 59% increase from their previous estimate of ~300,000. Also, CDC posted a new page to its website, Syndromic Surveillance of Emergency Department Visits for Tick Bites, showing tick bites by time, age/sex, and region.
This section contains information on legislation that has been introduced and/or passed by the federal government and individual states. It includes sections that contain the position the Lyme Disease Association has taken on various bills, if any; 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.
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 […]
The House Lyme Disease Caucus is a bi-partisan group working together in Congress to take action on Lyme & tick-borne diseases. Under the leadership of Congressmen Chris Smith (NJ) and co-chair Colin Peterson (MN), it has initiated letters and actions to benefit Lyme patients, such as the inclusion of the monies for Lyme & tick-borne […]
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 […]
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). […]
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.