Lyme patient advocate Monica White, President, Colorado Tick-Borne Disease Awareness Association (COTBBAA), had verbal comments accepted at the July 2020 meeting of the HHS Tick-Borne Diseases Working Group: “My name is Monica White. I’m president/co-founder of Colorado Tick-Borne Disease Awareness Association. I’ve lived with chronic Lyme, co-infections & conditions for nearly 16 years due to […]
HHS/TBD Working Group
The Tick-Borne Disease Working Group was established by the 21st Century Cures Act to improve federal coordination of efforts related to tick-borne diseases. Members will review all U.S. Department of Health and Human Services efforts related to tick-borne diseases to provide expertise and help ensure interagency coordination and minimize overlap, examine research priorities, and identify unmet needs.
This section contains articles on the meetings and progress of the Working Group.
The Access to Care Subcommittee unanimously recommended the following Potential Action.
Working Group Access to Care Subcommittee Report, Potential Action 4: Recommend that CDC provide input to the Council of State and Territorial Epidemiologists, CSTE, that the Lyme disease surveillance case definition be revised such that it abandons the use of geographic parameters for Lyme disease.
The Tick-Borne Disease Working Group (TBDWG) was established by the 21st Century Cures Act to improve federal coordination of efforts related to tick-borne diseases. The TBDWG’s purpose is to review federal activities and research related to all tick-borne diseases and provide a summary of its findings and any recommendations regarding changes or improvements to such findings to the HHS Secretary and Congress every two years.
The Tick-Borne Disease Working Group 2020 Report to Congress is now available (Report). The Report was presented to the Secretary of Health & Human Services in December 2020 by the Working Group (WG). The Secretary sent the Report to the Energy & Commerce Committee in the House of Representatives and the Health, Education, Labor, and Pensions […]
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 […]
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 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 […]
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 […]