Lyme Legislation & Legal Cases - 2019 Working Group- Federal

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.
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See Meeting Agenda At Link Below

https://www.hhs.gov/ash/advisory-committees/tickbornedisease/meetings/2019-9-12/index.html

*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

https://www.hhs.gov/ash/about-ash/news/2019/new-members-appointed-to-the-tick-borne-disease-working-group.html?fbclid=IwAR1BN1aTef2qYuM6rthAhkhcREDJhw-oclIjYkRtV23_vVM_9tB6v0bP9yM

Link to Petition to Remove Eugene Shapiro from TBDWG

https://www.change.org/p/tick-borne-disease-working-group-keep-eugene-shapiro-off-the-federal-tbdwg?recruiter=73619306&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition&utm_term=triggered&fbclid=IwAR0axk2EqT0-0Bdx8wjh3CBklhvGGV45p3o5t_Hc9z2mY3uFYOS3bIjic3c

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

https://www.lymedisease.org/shapiro-on-tbd-working-group-other-controversial-choices-too/?fbclid=IwAR0qJyIP4a6z_ulsugNb1OM6P_2HnMzp2p7QHziXaicjQ2noxyg2yu1fYKU

May 20, 2019

Say No To Shapiro!

Please sign the petition!

CLICK HERE!

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

https://sites.google.com/view/lyme-monsters/home?authuser=0

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

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.

https://www.lymedisease.org/shapiro-tbdwg/

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.