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10th Meeting of TBDWG – Sept 12, 2019 Summary

The tenth meeting of the Tick-Borne Disease Working Group (TBDWG) was held via webcast on Sept 12, 2019 from 9:00 a.m. to 3:00 p.m. ET. 

 

 

  • Subcommittee members were announced, and the Working Group received reports from the eight subcommittees that were formed during the June 4, 2019 meeting. 
  • Two subcommittee name changes were approved, since the Subcommittees felt names did not reflect the focus of the Subcommittees. Dr. Ben Beard, CDC, presented the change to the first committee, and Pat Smith, President LDA presented the change to the second. The two Subcommittees are now 1.) Babesiosis & Tick-Borne Pathogens and 2.) Training, Education, Access to Care & Reimbursement. Dr. Beard indicated his committee needed to include more of the tick-borne diseases and not just viral TBD. Ms. Smith was concerned because Working Group discussion had included Access to Care & Reimbursement and that without that aspect in the title, patients needs  were being being removed from the focus of the Subcommittee.
  • Public comments were presented by eight patients and avocates over a 30 minute time period. Issues shared included alpha-gal, 2019 TBDWG membership as it relates to patient/advocate representation, and transparency of the TBDWG process.
  • Three topic development briefs were shared with the Working Group. A common theme throughout the briefs was that the most existing research that had been collected in this process is either inconclusive or indicates that further research is needed in each of the three topic areas presented. The three topic development briefs were: 1.) Cause of increase for tick-borne diseases, 2.) Cause of persistent Lyme disease, and 3.) State of current testing for tick-borne diseases.
  • The Working Group created a new subcommittee, Federal Inventory, to analyze the new Federal inventory content for use in the 2020 report to congress. LDA President and TBDWG member, Pat Smith, volunteered to Chair this committee and Sam Donta volunteered to be Co-Chair.
  • Pat Smith also requested the list of NIH grants be released to the public.
  • Timeline for subcommittee work and dates for the next two (in-person) TBDWG meetings were announced.

The next (in-person) public meetings will be held January 28 & 29, 2020 in Washington, DC and March 3 & 4, 2020 in Philadelphia, PA

For details visit HHS-TBDWG webpage

Comments to the TBDWG may be emailed directly to tickbornedisease@hhs.gov




HHS Announces Sep 12 Tick-Borne Disease Working Group Meeting

State CapitalThe Department of Health and Human Services (HHS) gave notice that the Tick-Borne Disease Working Group (TBDWG) will hold a public meeting via webcast on September 12, 2019, from 8:30 a.m. to 5 p.m. ET (times are tentative and subject to change).

At the upcoming meeting, the TBDWG will receive updates from eight subcommittees that were formed and tasked with drafting a 2019 report for the HHS Secretary and Congress regarding activities and research related to tick-borne diseases, such as surveillance, prevention, diagnosis, diagnostics, and treatment (source, hhs.gov). The subcommittees will take into consideration the 2018 report and are expected to identify gaps in tick-borne disease research as well as offer suggestions (source, federalregister.gov).

The confirmed times and agenda items for the online meeting will be posted on the TBDWG page of the HHS website.  Members of the public who wish to view this meeting online are encouraged to register. Click here to register for the September 12th TBDWG Meeting.

Article References: FederalRegister.Gov and HHS.Gov

View the announcement for the 10th meeting of the TBDWG on FederalRegister.Gov




TBD Working Group Meeting Summary/Public Comments Now Available – June 4, 2019

hhsThe federal Tick-Borne Disease Working Group (TBDWG) held their ninth meeting in D.C. on June 4, 2019 with a focus on developing the next report to be drafted for the HHS Secretary and Congress. The report will include an update on federal tick-borne disease activities and research findings.

Read Meeting Summary and Written Public CommentsJune 4, 2019 TBDWG Meeting

Still pending: Archived Webcast, Slide Presentation




Pat Smith Appointed to New Panel of the TBDWG

Patricia V. Smith, has been appointed as one of the public members of the new panel for Health and Human Services Tick-Borne Disease Working Group (TBDWG).  Pat is in her 22 year as President of the all-volunteer run national non-profit Lyme Disease Association (LDA) and has been a leading voice and advocate for patients for over 3 decades. She was instrumental in writing and passing the legislation that resulted in the formation of this federally mandated TBDWG. This appointment was announced publicly during the first meeting of the new TBDWG on June, 4, 2019. 

 

Pat Smith, HHS TBDWG meeting, June 4, 2019. Photo courtesy of LymeDisease.org.

As witnessed during the meeting, Pat will continue to be the voice of the patient and the growing numbers of chronically ill.  The panel convened for introductions, to hear public comment, and to develop subcommittee topics and establish subcommittee chairs to begin the work toward the next report to Congress due November of 2020.  Unlike last term, nomination for subcommittee members will not be publicly solicited, but will be selected by the prospective co-chairs for each of the 7 subcommittees determined at the meeting. 

Swearing in of the HHS TBDWG members, June 4, 2019. Photo courtesy of LymeDisease.org.

 

 

Pat served on the inaugural panel of the TBDWG, which presented it’s first report to Congress in November of 2018.  She is joined for a second term by other returning members:

Charles Benjamin (Ben) Beard, Ph.D.-Deputy Director, Division of Vector-Borne Diseases, National Center for Emerging and Zoonotic Infectious Diseases, Centers for Disease Control and Prevention;

Dennis M. Dixon, Ph.D.-Chief, Bacteriology and Mycology Branch, National Institute of Allergy and Infectious Diseases, National Institutes of Health

Captain Estella Jones, DVM– Deputy Director, Office of Counterterrorism and Emerging Threats, Food and Drug Administration 

Other new public and federal members and their alternates were also announced at the first meeting of the new TBDWG panel, which took place June 4, 2019 in Washington DC, and include: 

Public Members

The new Working Group will be chaired by David Hughes Walker, M.D., Professor of Pathology and Executive Director, University of Texas Medical Branch Center for Biodefense and Emerging Infectious Diseases. He is an expert in Rickettsial diseases, particularly RMSF; and Leigh Ann Soltysiak, Owner, Principal, Silverleaf Consulting, LLC. 

Robert Sabatino– Founder and Executive Director, Lyme Society Inc., Staten Island, New York (Term expires in August 2019).

Scott Palmer Commins BS, M.D., Ph.D.– Associate Professor of Medicine & Pediatrics, University of North Carolina at Chapel Hill; Member, UNC Food Allergy Initiative, Thurston Research Center (Chapel Hill, North Carolina)

Sam T. Donta, M.D.– Infectious Disease Consultant, Falmouth Hospital; and Former Member, U.S. Department of Defense Tick Borne Disease Research Programmatic Review Panel (Falmouth, Massachusetts)

Eugene David Shapiro, M.D.– Professor of Pediatrics, Epidemiology, and Investigative Medicine, Yale University School of Medicine; Vice Chair for Research of the Department of Pediatrics; Co-Director of Education for the Yale Center for Clinical Investigation; and Deputy Director of Yale’s PhD Program in Investigative Medicine (New Haven, Connecticut)

Regular Government Employees (Federal Members)

Commander Rebecca Bunnell, MPAS, PA-C– Senior Advisor, Learning and Diffusion Group, Innovation Center, Centers for Medicare and Medicaid Services

Angel M. Davey, Ph.D.– Program Manager, Tick-Borne Disease Research Program, Congressionally Directed Medical Research Programs, U.S. Department of Defense

Leith Jason States, M.D., MPH (FMF)– Deputy Chief Medical Officer, Office of the Assistant Secretary for Health, U.S. Department of Health and Human Services

Adalberto (Beto) Pérez de León, M.D.– Director, Knipling-Bushland U.S. Livestock Insects Research Laboratory, Agricultural Research Service, U.S. Department of Agriculture

Alternate Government Employees (Federal Members)

Chien-Chung Chao, Ph.D.– Research Chemist, Viral and Rickettsial Diseases Department Infectious Diseases Directorate, Naval Medical Research Center, U.S. Department of Defense

Captain Scott J. Cooper, MMSc, PA-C- Senior Technical Advisor and Lead Officer for Medicare Hospital Health and Safety Regulations, Centers for Medicare and Medicaid Services

Shahla Jilani, M.D.-Deputy Chief Medical Officer, Office of the Assistant Secretary for Health, U.S. Department of Health and Human Services

David A. Leiby, Ph.D.-Chief, Product Review Branch, Division of Emerging & Transfusion-Transmitted Diseases, Office of Blood Research & Review, Center for Biologics Evaluation & Research, Food and Drug Administration

Commander Todd Myers, Ph.D.-Scientist, Office of the Chief Scientist, Office of Counter Terrorism and Emerging Threats, Food and Drug Administration

Samuel S. Perdue, Ph.D.-Section Chief, Basic Sciences and Program Officer, Rickettsial and Related Diseases, Bacteriology and Mycology Branch, National Institute of Allergy and Infectious Diseases), National Institutes of Health

Susanna N. Visser, Dr.PH -Associate Director for Policy, Division of Vector-Borne Diseases, National Center for Emerging and Zoonotic Infectious Diseases, Centers for Disease Control and Prevention

HHS TBDWG website

HHS TBDWG Members Press release




L. Johnson on Meaningful Patient Representation on the next TBDWG

Lorraine Johnson, JD, MBA, Chief Executive Officer of LymeDisease.org delves into the importance of meaningful patient representation on the Federal HHS Tick-Borne Disease Working Group (TBDWG) in her latest blog.  This is especially important as we await the announcement of panelists to the new TBDWG charged with the next report to Congress due in 2020. A recent patient survey conducted by lymedisease.org  found “To be a meaningful representative, patients chosen for a panel should: a) have or be a caregiver to a patient with chronic Lyme disease and b) should be an officer or director or someone vetted and approved by a recognized and trusted patient advocacy group (PAG) or someone approved by a PAG.” Read the entire blog by Lorraine Johnson here:

LYMEPOLICYWONK: Who represents Lyme disease patients? Why it matters.




LDA Provides Input to National Institutes of Health Strategic Plan Development

The National Institutes of Health put out a request for information in February 2019 for stakeholders to submit specific comments that were to be submitted through an online form.  The NIH is developing a strategic plan to advance tick-borne disease (TBD) research and development over the next five years and beyond.

The Lyme Disease Association, Inc. submitted the following letter in response to the request. No comments will be made back to the responders. NIH encouraged organizations (e.g., patient advocacy groups, professional organizations) to submit a single response reflective of the views of the organization/membership as a whole when possible.

The Tick-Borne Disease Working Group under HHS in Washington, DC, submitted a report to Congress in November of 2018 that made the following recommendation:

Recommendation 8.1: NIH: Create an NIH tick-borne disease strategic plan, with public input during creation and implementation, to address tick-borne diseases, including all stages of Lyme disease. Include in the strategic plan the coordination of research funding across NIAID, NINDS, NIAMS, and NIMH to increase knowledge of pathogenesis, improve diagnosis, and develop and test new therapeutics for tick-borne diseases. Update every five years.

Click here for Lyme Disease Association letter to NIH

NIH request for Information

https://grants.nih.gov/grants/guide/notice-files/NOT-OD-19-077.html




TBD Working Group Meeting Summaries Now Available – May 10, 15-16 & Jun 21, 2018

2017 HHSworkingGroup closerThe May 10, May 15-16, and June 21, 2018 meeting summaries of the HHS Tick-Borne Disease Working Group are now available. Click on the following links and then click on “Meeting Summary.”  June 21, 2018, TBDWG Meeting (on-line)      May 15-16, 2018, TBDWG Meeting (in-person)     May 10, 2018, TBDWG Meeting (on-line)


The May 10, May 15-16, and June 21, 2018 meeting summaries of the HHS Tick-Borne Disease Working Group are now available.

Click on the following links and then click on “Meeting Summary.”




TBD Working Group Meeting Summaries Now Available: May 10, 15-16, Jun 21, 2018

2017 HHSworkingGroup closerThe May 10, May 15-16, and June 21, 2018 meeting summaries of the HHS Tick-Borne Disease Working Group are now available.

Click on the following links and then click on “Meeting Summary.”




Solicitation of Nominations for Appointment to the Tick-Borne Disease Working Group

https://www.federalregister.gov/documents/2018/11/16/2018-25082/solicitation-of-nominations-for-appointment-to-the-tick-borne-disease-working-group

 




Congressman Chris Smith Press Release – 2018 Tick-Borne Disease Working Group Report Confirms Lyme is Spreading, Time for Action is Now

Smith HeadFirst biennial report to Congress gives blueprint for federal response

2018 Tick-Borne Disease Working Group Report Confirms Lyme is Spreading, Time for Action is Now

Washington, Nov 14, 2018 | Matt Hadro ((202) 225-3765)

The 2018 Tick-Borne Disease Working Group Report to Congress—the very first report by the new HHS Working Group—confirms what Rep. Chris Smith (R-NJ) and other advocates have long warned of, that incidents of Lyme disease and other tick-borne diseases are increasing and that more federal attention to the problem is needed, Smith said on Wednesday.

Click here for full Press Release from the office of Congressman Chris Smith