2019 TBD Working Group
*UPDATE- September 12, 2019
List of TBDWG members, new and old, are here. Notice there are no patient representatives other than one person who served on the vaccine sub-committee last time (they now claim she was a Lyme patient), and Eugene Shapiro is still on the TBDWG in spite of all of the objections.
Verbal Presentation- If you want an opportunity to speak for 3 minutes during the meeting (by phone) your request must be submitted by midnight Wednesday, September 4, 2019. More info here.
Submit Written Comments...
- Written public comments must be submitted via email by midnight Wednesday, September 4, 2019, ET to tickbornedisease@hhs.gov. In the Subject line please enter: Written Public Comment – September 12 Meeting.
- Comments should either be provided in the body of your email, or in an attachment in Word format and equivalent to no more than 4 pages in Calibri or Times New Roman, 11 point font. Text that exceeds the 4 pages will be deleted.
- When you submit your written comment, please let us know how you would like to be identified with your comment. You may choose to use your name or to be anonymous. You may also list your city and/or state. If you are providing comments on behalf of an organization, please include the name of the organization. We cannot post your comment until you let us know how you would like to be identified.
- We are unable to post graphics, images, text boxes, tables or attachments as supporting documentation to your written comments. Please refrain from including such material in submissions.
- We can only create hyperlinks to “.gov” sites (state or federal). For all other reference sites, please insert the full URL (e.g., http://learn.genetics.utah.edu/content/epigenetics).
See Meeting Agenda At Link Below
https://www.hhs.gov/ash/advisory-committees/tickbornedisease/meetings/2019-9-12/index.html
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*UPDATE- June 3, 2019
After much back and forth and pushing to get information about webcam registration so we can watch the TBDWG meeting, and get information on who has been selected as new members, here is the last minute report from bits and pieces I've gathered, with less than 16 hours before meeting starts.
It should not have been necessary to send multiple emails for information and place multiple calls to HHS and others to get this information (they had 6 months to get it right). Finally, with no one acting on the requests, I called a member of Congress today and asked if they would give them a push so we could get this information.
Bad news- Eugene Shapiro is on the TBDWG.
Link with List to New TBDWG Members
Link to Petition to Remove Eugene Shapiro from TBDWG
Information about watching the meeting on webcast- you need to register (free to do so). See 3rd paragraph.
https://www.hhs.gov/ash/advisory-committees/tickbornedisease/meetings/2019-6-4/index.html
Meeting Date & Time- 8:30 a.m. to 5:00 p.m. Eastern Time. The TBDWG members will focus on plans to develop the next report to the HHS Secretary and Congress on federal tick-borne activities and research, taking into consideration the 2018 report.
https://www.hhs.gov/ash/advisory-committees/tickbornedisease/meetings/2019-6-4/index.html
More information here from LymeDisease.org
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May 20, 2019
Say No To Shapiro!
Please sign the petition!
For those who don't know Shapiro- he is one of the Lyme Monsters.
An overview is located here (scroll down a bit).
Lyme Monsters
May 19, 2019- ACTION ALERT
Please check in here on Monday, May 20, 2019 to read and respond to an important Action Alert!
Hoping that you will also share it with your family, friends and groups too!
If they don't have Lyme now, bless their hearts, they will still want to take action to protect themselves in the future if they do get it.
Thank you for your efforts!
Lucy Barnes
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Picking the Members For the
Federal Tick Borne Disease Working Group
2019 Session
May 16, 2019- IDSA anounced that Eugene "Pinochio Nose" Shapiro has been selected for the TBD Working Group. This is as bad or worse than having Gary Wormser on there.
IDSA Member Appointed to
Tick-borne Disease Working Group
May 17, 2019- IDSA member Eugene Shapiro, MD, FIDSA has been selected to serve on the second session of Department of Health and Human Service’s (HHS) Tick-borne Disease Working Group, which resumes its activities with an in-person meeting in Washington, DC on June 4. IDSA engagement in this group is essential to promote evidence-based approaches to treating tick-borne diseases.
The first session of the TBD Working Group began in December 2017 and culminated with the publication of its report in December of 2018. IDSA supported many of the report’s recommendations, including its calls for more funding in areas like tick epidemiology, vector control, and basic research.
However, we expressed serious concerns about the report’s recommendations to require insurance companies to cover any treatment prescribed for Lyme disease, and to protect physicians from any professional repercussions for administering potentially harmful treatments to patients that have no evidence-based research behind them.
HHS did not publicize this report and it has received very little attention from policymakers.
Link Here
List of Members & Staff
As of May 17, 2019- The Tick-Borne Disease Working Group has 14 members - seven federal members and seven public members. Federal members represent the Office of the Assistant Secretary for Health, Food and Drug Administration, Centers for Disease Control and Prevention, National Institutes of Health, and other federal agencies or offices the Secretary of the U.S. Department of Health and Human Services determines appropriate.
Public members represent the following categories: 1) physicians and other medical providers with experience in diagnosing and treating tick-borne diseases;
2) scientists or researchers with expertise;
3) patients and their family members; and 4) nonprofit organizations that advocate for patients with respect to tick-borne diseases.
Nominations for new public members to complete the roster are currently under review. Once all new public members are approved, this page will be updated.
See more information at link below.
https://www.hhs.gov/ash/advisory-committees/tickbornedisease/members/index.html