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 […]
President Trump hosted Michigan State Rep. Karen Whitsett and other COVID-19 survivors at the White House. During their discussions, Rep. Whitsett, who nearly lost her life to COVID-19, brought up her chronic Lyme disease as an underlying condition. Throughout the 41 minute meeting, President Trump highlighted how serious & devastating Lyme disease is and stated that it “can kill you”.
On April 9th, Rep. Chris Smith sent a letter to Health and Human Services (HHS) Secretary Alex Azar and the National Institute for Allergies and Infectious Disease (NIAID) Director, Dr. Anthony Fauci, thanking them for their tireless efforts to address the Coronavirus outbreak as well as expressing his concerns about Lyme disease sufferers and their […]
The Lyme Disease Association Inc. (LDA) feels it is imperative that the Lyme Community and the public understand the continued resistance by government agencies to provide information pertaining to chronic Lyme disease on their websites and in their programs despite Lyme disease being around 45 years. LDA has provided video clips from the HHS Tick-Borne […]