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Lyme Patients: Speak Up Now on Persistent/Chronic Lyme! Sept 4 Deadline

Federal Tick-Borne Disease Working Group (TBDWG)Background: 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. Read more about the last TBDWG meeting.

At the upcoming September meeting, the WG will vote on proposed changes in language that can affect patient access to care. Please submit verbal or written comments now, deadline to request verbal comment or to submit written comment 11:59 p.m., ET, Friday, September 4, 2020. 

Meeting Details: The fifteenth meeting of the Tick-Borne Disease Working Group (TBDWG) will be held on two non-consecutive days, September 15 and 22. This is an online meeting and everyone is welcome to attend. The TBDWG will review the draft 2020 report to the HHS Secretary and Congress, as well as review and approve graphics and images for the report.

Register to Attend the Online Meeting. 

View the Federal Register Meeting Notice.

View the Meeting Agenda.

How to Submit Your Request for Verbal Public Comment at September 15 meeting (heard online at meeting): Verbal remarks will be provided by the public over the phone during the live webcast and will become part of the archived recording and meeting summary that is posted afterward on the HHS website.  

  • Deadline: All sign-up requests must be received by 11:59 p.m., ET, Friday, September 4
  • Submit an email request to [email protected]
  • Use the email subject line: Verbal Public Comment – September 15

​Next steps: If more requests to provide verbal public comment are received than can be accommodated during the meeting, speakers will be randomly selected. You will receive notification on the status of your request on Wednesday, September 9.

  • If you are selected to provide verbal public comment at the meeting, you will be asked to confirm that you are still available to speak during the assigned time. Upon confirmation, you will receive a call-in number and time to provide your comment. Each person will be limited to 3 minutes in order to accommodate as many speakers as possible. If you are no longer able to provide verbal public comment, HHS will randomly select another speaker. 
  • If you are not selected, you are welcome to submit your name for consideration in a future meeting of the Working Group once the meeting information is posted.
  • Please note: All public comment requests that were made for the postponed August meeting will be reviewed for possible speaking opportunity at the September 15 meeting.  Those who did not request to speak at the August meeting may also apply to speak for the September 15 meeting. 

Please note: All public comment requests that were made for the postponed August meeting will be reviewed for possible speaking opportunity at the September 15 meeting. Those who did not request to speak at the August meeting may also apply to speak for the September 15 meeting.

How to Submit Your Written Public Comment: Written public comments are shared with Working Group members and are also posted on the HHS webpage. Written public comments will be made accessible to the public in advance of the meeting.

  • Submit an email to [email protected]
  • Use the email subject line: Written Public Comment – September 15
  • Provide your preferred identification: Explain how you prefer to be identified with your comment. Without this information, your comment will not be posted. You may choose one or more of the following options:
    • Use your name
    • Be listed as anonymous
    • Include your city and/or state
    • Provide comments on behalf of an organization (please include the organization’s full name)
  • Deadline: All written comments must be received by 11:59 p.m., ET, Friday, September 4

Writing your public comment:

  • Format: Comments must be in the body of your email or in an attached Word document.
  • Page Limit: Comments must not exceed four (4) pages in Calibri or Times New Roman, 11 point font (text that exceeds four pages will be deleted).
  • Graphics: Do not include graphics, images, text boxes, or tables. If included, they will not be retained.
  • Links: Hyperlinks will only be added for “.gov” sites (local, state, or federal). For all other reference sites, please insert the full URL (e.g., https://learn.genetics.utah.edu/content/epigenetics).
  • Attachments: Do not include any attachments. It is not possible to include attachments as supporting documentation to written comments.

Next steps: Your written comment will be posted to the HHS website before the meeting. If you have any questions or concerns about submitting your comment, contact [email protected].