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 […]
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.
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.
In a complex government process, the Tick Act–a bill that provides funding for Vector-Borne Diseases including Lyme – was not fully funded according to the Committee report on HHS. The Committee report has 16M for Lyme and 38M for vector-borne diseases. (NOTE: as LDA has mentioned in prior information on the Tick Act, it is […]
Update: The Bill and passed amendments such as this one (below) has now moved to the conference committee where the House and Senate will work to decide what language goes into the final product. The LDA provided input into the amendment language and has been working to get Senators to champion the inclusion of this GAO Investigation Amendment into the final bill.
Pat Smith Describes Pre-Meeting Effort to Minimize Lyme. Below in For the Record are the written comments LDA President Pat Smith, a public member of HHS TBD Working Group read (slightly compressed) into the record at the Working Group (WG) meeting on July 8 about the potential WG Chapter report for which she was responsible, […]
IMMEDIATE ACTION Recommended by LDA: Make Your Voices Heard on Persistent Lyme to the Working Group Now! June 24th Deadline. Our government denies persistent (chronic) Lyme and refuses to acknowledge and help those patients. Please submit comments, can be short, about the existence and importance of persistent (chronic) Lyme. How it affects your life, family, job,
The thirteenth meeting of the Tick-Borne Disease Working Group (Working Group) was held online on April 27, 2020, from 9:00 a.m. to 12:30 p.m., ET. This meeting was open to the public, with request to comment accepted by April 19, 2020. The Working Group reviewed the work of the Public Comment Subcommittee followed by the Federal […]