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Nov. 14: HHS Tick-Borne Disease Working Group Announces Release of Report to Congress; Centers for Disease Control & Prevention Announces Higher than Ever Lyme Disease Cases

2017 HHSworkingGroup closerTwo major releases from the US Government today confirm what advocates and patients have long known — there is a growing Lyme & tick-borne diseases problem sweeping the land and Congress needs to take action to curb the spread.

In a release long awaited by the Lyme community, the US Department of Health & Human Services announced today that the federal Tick-Borne Disease Working Group (WG) issued its first report to Congress, the Secretary of the Department of Health & Human Services, and the public—with 2 more reports to follow over the next four years.

Recommendations to Congress include improvement in diagnosis & treatment including new rapid & accurate tests; development of antibiotic combinations and/or therapeutic options for acute and persistent illness; strengthening national surveillance; pathogen-host interaction; federal strategic plan development; funding for TBD; and effects of TBD on national security/service members/veterans/families.

According to Lyme Disease Association, Inc. (LDA) President Pat Smith–one of the 14 members of the Working Group–speaking on behalf of the LDA, “Patients and advocates have waited decades for a government report that contains insights from Lyme patients/family members and advocates as this report does, both from WG members and from the public at large. The report is a first step to unlocking the political gridlock surrounding tick-borne diseases, particularly Lyme.”

She added, “Many of us are horrified that after 45 years of Lyme disease, new generations of babies continue to become infected and not receive the proper diagnosis and treatment needed to prevent lifelong suffering. Now this document, prepared using expert and “real world” input, will be used to inform Congress so they can act to provide the necessary funds to stop this tick-borne disease epidemic sweeping our country.”

Click here for Working Group Press Release

Click here for Working Group Report to Congress  (Click on “2018 TBDWG Report to HHS Secretary and Congress – PDF”)

Click here for story on report & new CDC numbers

Click here for Congressman Chris Smith’s Press Release

Click here for Asbury Park Press – Lyme Disease: Federal panel recommends testing overhaul, more changes to Congress

CDC Report on Case Numbers
In a separate release by the Centers for Disease Control & Prevention (CDC) on the state of tick-borne diseases in the US, CDC introduced its new platform for reporting Lyme disease statistics. The release indicates that there has been an increase in all tick-borne diseases, not just Lyme disease, and that it is the highest total annual number of Lyme cases ever reported at 42,743 cases, and a total of all reported tick-borne diseases of 59,349, which includes Lyme, anaplasmosis/ehrlichiosis, spotted fever rickettsiosis, babesiosis, tularemia, and Powassan virus.

The Lyme Disease Association, Inc. reminds the public that Lyme is underreported by a factor of 10, therefore, 427,430 cases of Lyme disease probably occurred in 2017 in the U.S. alone.

Click here for CDC Report

 

 




Tick-Borne Disease Working Group 7th Meeting, July 24 – Online and Open for Comment

https://lymediseaseassociation.org/government/federal-government/govt-departments-a-policies/hhs-tbd-working-group/press-release-from-congressman-chris-smith-on-hhs-working-group/news

Update: Click here for Draft of TBD Working Group’s report to Congress

The seventh meeting of the Tick-borne Disease Working Group will be held on July 24, 2018, from 10:00 a.m. to 4:00 p.m. EDT. The Working Group will review and vote on the content of the five chapters that will be submitted into the Working Group Congressional Report. Please Note: If you would like to receive a copy of the draft chapters, please submit a request to tickbornedisease@hhs.gov. The meeting materials will be emailed to you prior to the meeting. We encourage you to register exit disclaimer icon for the meeting.

Update: Click here for Draft of TBD Working Group’s report to Congress

The seventh meeting of the Tick-borne Disease Working Group will be held on July 24, 2018, from 10:00 a.m. to 4:00 p.m. EDT. The Working Group will review and vote on the content of the five chapters that will be submitted into the Working Group Congressional Report.

Please Note: If you would like to receive a copy of the draft chapters, please submit a request to tickbornedisease@hhs.gov. The meeting materials will be emailed to you prior to the meeting.

We encourage you to register exit disclaimer icon for the meeting.

Members of the public can attend the meeting via webcast.  
You must sign up exit disclaimer icon to watch the live webcast. Once signed-up, you will receive a link to access the meeting.
The conference call number to access the meeting is 1-888-935-0263  Passcode: 5409210

Written Public Comment
Additional comments will be added up through July 19.

Public Comment – Information and Instructions

The Working Group invites public comment on issues related to its charge. You have the option of verbal comment, written comment or both. Thus, if you provide verbal comment, you may also submit it as written comment or submit written comment on a different issue.

Verbal (by phone) comments:

  • Requests to provide verbal public comment must be submitted via email by July 19, 2018 EDT to tickbornedisease@hhs.gov.
    • In the Subject line please enter: Verbal Public Comment – July 24 Meeting.
  • A total of 30 minutes has been set aside for verbal comments. Each person will be limited to 3 minutes in order to accommodate as many speakers as possible.
  • If more requests are received than can be accommodated, speakers will be randomly selected.
  • Your remarks will be broadcast over a live webcast and will become part of the archived recording and meeting transcripts that will be posted on this website.

Written comments:

  • Written public comments must be submitted via email by July 19, 2018 EDT to tickbornedisease@hhs.gov.
    • In the Subject line please enter: Written Public Comment – July 24 Meeting.
  • Written comments will be posted on the Tick-Borne Disease Working Group website and accessible to the public.
  • IMPORTANT: When you submit your written comment, please include how you would like to be identified with your comment. That is, you may use your name or request to be anonymous. You may also include your city and/or state. If you are providing comments on behalf of an organization you also may include your name, organization, and organization email address. We do NOT post phone numbers or personal email addresses.
  • Comments should be no more than 4 pages in Calibri or Times New Roman, 11 point font. Text that exceeds the 4 pages will be deleted.
  • Written comments should either be provided in the body of the email, or in an attachment in Word format.
  • Please do not include graphics, images, or text boxes. If included, we will not be able to retain them. Simple tables are acceptable.
  • We can only retain links to “.gov” sites (state or federal).  For all other reference sites, please insert the full URL (e.g., https://www.jscimedcentral.com/ClinicalCytology/clinicalcytology-3-1085.pdf).
  • Do not include attachments as supporting documentation to your written comments; instead, please list them as references.

Click here for more information including Agenda




Tick-Borne Disease Working Group 6th Meeting, June 21 – Online and Open for Comment

From HHS.gov – The sixth meeting of the Tick-borne Disease Working Group will be from 9:30 a.m. to 6:30 p.m. (Eastern) on June 21. The Working Group will focus on consensus of the six subcommittee findings and determine the major content of the five chapters that will be submitted into the Working Group Congressional Report. Note: If you would like to receive a copy of the draft chapters, please submit a request to tickbornedisease@hhs.gov. The document will be emailed to you prior to the meeting. We encourage you to register for the on-line meeting, where you can indicate if you would like to provide verbal and/or written public comment and receive updates about the Working Group. Members of the public can attend the meeting via webcast.  You must sign-up  to watch the live webcast.

From HHS.gov

The sixth meeting of the Tick-borne Disease Working Group will be from 9:30 a.m. to 6:30 p.m. (Eastern) on June 21. The Working Group will focus on consensus of the six subcommittee findings and determine the major content of the five chapters that will be submitted into the Working Group Congressional Report. Note: If you would like to receive a copy of the draft chapters, please submit a request to tickbornedisease@hhs.gov. The document will be emailed to you prior to the meeting.

We encourage you to register  for the on-line meeting, where you can indicate if you would like to provide verbal and/or written public comment and receive updates about the Working Group.

Members of the public can attend the meeting via webcast.  
You must sign-up  to watch the live webcast. Once signed-up, you will receive a link to access the June 21st meeting. Please use this conference call information to access the audio portion: 1-888-324-8114 Passcode: 5409210

Written Public Comment

Public Comment – Information and Instructions

The Working Group invites public comment on issues related to its charge. You have the option of verbal comment, written comment or both. Thus, if you provide verbal comment, you may also submit it as written comment or submit written comment on a different issue.

Verbal (by phone) comments:

  • Requests to provide verbal public comment must be submitted via email by June 18, 2018 (Eastern) to tickbornedisease@hhs.gov. In the Subject line please enter: Verbal Public Comment – June 21 Meeting.
  • A total of 30 minutes has been set aside for verbal comments. Each person will be limited to 3 minutes in order to accommodate as many speakers as possible.
  • If more requests are received than can be accommodated, speakers will be randomly selected.
  • Your remarks will be broadcast over a live webcast and will become part of the archived recording and meeting transcripts that will be posted on this website.

Written comments:

  • Written public comments must be submitted via email by June 18, 2018 (Eastern) to tickbornedisease@hhs.gov. In the Subject line please enter: Written Public Comment – June 21 Meeting.
  • Written comments will be posted on the Tick-Borne Disease Working Group website and accessible to the public.
  • Comments should be no more than 4 pages in Calibri or Times New Roman, 11 point font. Text that exceeds the 4 pages will be deleted.
  • Written comments should either be provided in the body of the email, or in an attachment in Word format.
  • Please do not include graphics, images, or text boxes. If included, we will not be able to retain them. Simple tables are acceptable.
  • We can only retain links to “.gov” sites (state or federal).  For all other reference sites, please insert the full URL (e.g., https://www.jscimedcentral.com/ClinicalCytology/clinicalcytology-3-1085.pdf).
  • Do not include attachments as supporting documentation to your written comments; instead, list them as references.
  • IMPORTANT: When you submit your written comment, please include a statement letting us know how you would like your comments to be identified. This information will be used to link you with your comments. 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 we will identify you and the organization, if you provide a statement requesting we include this information.



Previous TBD Working Group Meetings on HHS.gov

See summaries, transcripts, slide presentations, written public comment, transcripts of verbal comment, agendas, and webcasts.

See summaries, transcripts, slide presentations, written public comment, transcripts of verbal content, agendas, and webcasts.




TBD Working Group Subcommittee Reports Available

The Tick-Borne Disease Working Group (Working Group) is required to submit a report on its activities and any recommendations to the HHS Secretary and Congress every two years. The first report is due December 2018.  The six subcommittees of the Working Group prepared reports to inform the Working Group and its 14 voting members. These reports offer insights into gaps, opportunities and potentials actions to be considered by the Working Group for the report to Congress and HHS Secretary. 

The Tick-Borne Disease Working Group (Working Group) is required to submit a report on its activities and any recommendations to the HHS Secretary and Congress every two years. The first report is due December 2018. 

The six subcommittees of the Working Group prepared reports to inform the Working Group and its 14 voting members. These reports offer insights into gaps, opportunities and potentials actions to be considered by the Working Group for the report to Congress and HHS Secretary. 

Report of the Access to Care Services and Support to Patients Subcommittee

Report of the Disease Vectors, Surveillance, and Prevention Subcommittee

Report of the Other Tick-Borne Diseases and Co-Infections Subcommittee

Report of the Pathogenesis, Transmission and Treatment Subcommittee

Report of the Testing and Diagnostics Subcommittee

Report of the Vaccine and Therapeutics Subcommittee

 




Midcoast Lyme Draws Crowd: HHS Working Group Slides Available From HHS V. Chair

kristenhoney presentation loHundreds of people came out to hear about Lyme disease at the 4th Annual Midcoast Lyme Disease Support & Education Conference in Augusta, Maine, on April 28th, 2018. Over thirty experts spoke, including LDA President Pat Smith, Drs. Brian Fallon, Neil Spector, Lee Cowden and Kristen Honey, PhD, PMP, Vice Chair of the HHS Tick-Borne Disease Working Group. Dr. Honey is also a Lyme survivor. Her presentation titled Lyme Innovation, provided an overview of the TBD Working group– it’s background, responsibilities, including details of operation, reporting and timelines. Click here to view slide presentation

kristenhoney presentation loHundreds of people came out to hear about Lyme disease at the 4th Annual Midcoast Lyme Disease Support & Education Conference in Augusta, Maine, on April 28th, 2018. Over thirty experts spoke, including LDA President Pat Smith, Drs. Brian Fallon, Neil Spector, Lee Cowden and Kristen Honey, PhD, PMP, Vice Chair of the HHS Tick-Borne Disease Working Group. Dr. Honey is also a Lyme survivor. Her presentation titled Lyme Innovation, provided an overview of the TBD Working group– it’s background, responsibilities, including details of operation, reporting and timelines. CLICK HERE TO VIEW SLIDE PRESENTATION

Working Group meetings are open to the public, and minutes, reports, expenses and related documents are stored in a searchable database that is available to the public.

 

kristen honeyBio – Kristen Honey, PhD, PMP (Vice-Chair, HHS Tick-Borne Disease Working Group)

Senior Policy Analyst, Office of Management and Budget,
Office of the Federal Chief Information Officer
Executive Office of the President;
Senior Research Scholar, Stanford University;
Member, Stanford University Lyme Disease Working Group

Dr. Honey is a Senior Policy Analyst in the White House Office of Management and Budget, Executive Office of the President, Washington D.C. She is also a Senior Research Scholar at Stanford University and member of the Stanford University Lyme Disease Working Group. As a broadly trained biologist and ecologist with a passion for real-world challenges, she gravitates to “wicked problems” like tick-borne diseases. She transforms scientific methods through open data, open science, open source, and open innovation (e.g., crowdsourcing, citizen science, prizes, challenges, and public-private collaborations). In 2015 to 2016, Dr. Honey co-founded Lyme Innovation and led data-driven innovations for invisible illness, mental health, and suicide prevention from the White House Office of Science and Technology Policy. She was a 2013–2015 Science and Technology Policy Fellow with the American Association for the Advancement of Science.

Dr. Honey earned her Ph.D. at Stanford University in the Emmett Interdisciplinary Program in the Environment and Resources, School of Earth Sciences, while simultaneously earning a Ph.D. minor in Civil and Environmental Engineering. She holds an M.A. in Environmental Studies from the University of California, Santa Cruz, and a B.A. in Human Biology with Honors from Stanford University. She is originally from Portland, Maine, and the small island town of Long Island in Casco Bay, Maine, and is a late-stage Lyme disease survivor.

In Her Own Words: “I am a late-stage Lyme disease survivor. My personal Lyme healing journey is one of grit, courage, and inspiring recovery.”


CLICK HERE FOR INFO/REGISTER FOR 4TH MEETING OF THE TBD WORKING GROUP – MAY 10, 2018 

CLICK HERE FOR INFO/REGISTER FOR 5TH MEETING OF THE TBD WORKING GROUP – MAY 15-16, 2018

RELATED ARTICLES:

NEW MEMBER NAMED TO SERVE ON TICK-BORNE DISEASE WORKING GROUP – ROBERT SABATINO

NEW SUBCOMMITTEE CO-CHAIR NAMED BY HHS – PAULA JACKSON JONES

 

 




New Member Named to Serve on Tick-Borne Disease Working Group

Bob SabatinoRobert Sabatino, Founder and Executive Director of Lyme Society Inc., was named a public member of the Tick-Borne Disease Working Group. Lyme Society is the New York affiliate partner of Lyme Disease Association. As a patient and advocate, he continues to contribute to legislation, education, and awareness. From his own perspective as a patient, his focus is on the life and struggles of patients and treatments in society today. He retired from the New York Police Department that specialized in Drug Enforcement, Addiction Services, Community Outreach and Domestic Violence Awareness.

Posted May 2, 2018 on Bob SabatinoRobert SabatinoHHS.gov

Robert Sabatino, Founder and Executive Director of Lyme Society Inc., was named a public member of the Tick-Borne Disease Working Group. Lyme Society is the New York affiliate partner of Lyme Disease Association. As a patient and advocate, he continues to contribute to legislation, education, and awareness. From his own perspective as a patient, his focus is on the life and struggles of patients and treatments in society today. He retired from the New York Police Department that specialized in Drug Enforcement, Addiction Services, Community Outreach and Domestic Violence Awareness. He is a founding member of the Staten Island patients support group formed by the State Island Burroughs Presidents Office.

Lyme Society, Inc. is having its First Annual Lyme and Tick-Borne Disease Conference, Staten Island, NY, on May 12, 2018. Free to the public. LDA President, Pat Smith will be speaking, as well as Dr. Kenneth Liegner, Dr. Brian Fallon, Dr. Robert Bransfield, and Dr. Ernest Visconti will be at Q&A. Click here for more information on Lyme Society Conference

Click here for information on the 4th meeting of the TBD Working Group – May 10, 2018




Membership Changes on Access to Care Services & Support to Patients Subcommittee

Posted April 24, 2018 on HHS.gov

Sherill Franklin, a small business owner and patient advocate from Pennsylvania, will join the Access to Care Services and Support to Patients Subcommittee of the Tick-Borne Disease Working Group. Ms. Franklin has written extensively about her own 30-year experience with Lyme disease and has advocated for better diagnostic tools and definitive treatments for tick-borne disease. She will replace Dr. Enid Haller, who is departing.

Posted April 24, 2018 on HHS.gov

Sherill Franklin, a small business owner and patient advocate from Pennsylvania, will join the Access to Care Services and Support to Patients Subcommittee of the Tick-Borne Disease Working Group. Ms. Franklin has written extensively about her own 30-year experience with Lyme disease and has advocated for better diagnostic tools and definitive treatments for tick-borne disease. She will replace Dr. Enid Haller, who is departing.




New Subcommittee Co-Chair Named by HHS

Paula Jackson Jones loPaula Jackson Jones, President of Midcoast Lyme Disease Support and Education (MLDSE), was named co-chair of the Access to Care Services and Support to Patients Subcommittee. Jones co-founded the Maine-based group in 2014 as a result of her own experiences as a patient with Lyme disease. (LDA note: MLDSE is a partner with the Lyme Disease Association LDAnet umbrella organization.)

Paula Jackson Jones loPaula Jackson JonesSubcommittee Co-Chair Named (posted April 16, 2018 on HHS.gov)

Paula Jackson Jones, President of Midcoast Lyme Disease Support and Education (MLDSE), was named co-chair of the Access to Care Services and Support to Patients Subcommittee. Jones co-founded the Maine-based group in 2014 as a result of her own experiences as a patient with Lyme disease. (LDA note: MLDSE is a partner with the Lyme Disease Association LDAnet umbrella organization.)

An updated listing of the co-chairs of the six subcommittees of the Tick-Borne Disease Working Group is provided below.

Subcommittee Co-Chairs (as of April 16, 2018)

Disease Vectors, Surveillance, and Prevention

Pat Smith
Ben Beard, MS, PhD

Pathogenesis, Transmission and Treatment

Wendy Adams, MBA
Captain Estella Jones, DVM

Testing and Diagnostics

Lise E. Nigrovic, MD, MPH
David Roth, JD

Access to Care Services and Support to Patients

Paula Jackson Jones
Commander Scott Cooper, MMSc, PA-C

Vaccine and Therapeutics

Robert Smith, MD, MPH, FACP, FIDSA
Dennis Dixon, PhD

Other Tick-Borne Diseases and Co-Infections

Richard Horowitz, MD
Allen Richards, PhD

Click here for information on the 4th meeting of the TBD Working Group – May 10, 2018




Tick-Borne Disease Working Group 4th Meeting, May 10 – Online and Open for Comment

2017 HHSworkingGroup closerFrom HHS.gov and Office of the Federal Register. The Department of Health and Human Services (HHS) announces the fourth “on-line” meeting of the Tick-Borne Disease Working Group (Working Group) on May 10, 2018, from 8:30 a.m. to 6:45 p.m., Eastern Time. This is an on-line meeting that is open to the public. Members of the public may attend the meeting via webcast; instructions on how to attend will be posted one week prior to the meeting at https://www.hhs.gov/ash/advisory-committees/tickbornedisease/index.html The meeting will be recorded. You must be registered to access the meeting. Register Here

2017 HHSworkingGroup closerFrom HHS.gov and Office of the Federal Register

The Department of Health and Human Services (HHS) announces the fourth “on-line” meeting of the Tick-Borne Disease Working Group (Working Group) on May 10, 2018, from 8:30 a.m. to 6:45 p.m., Eastern Time.

The meeting will focus on the reports describing the work of the six subcommittees of the Working Group.  These subcommittees were established to assist the Working Group with the development of the report to Congress and the HHS Secretary as required by the 21st Century Cures Act. The subcommittees are:

1. Disease Vectors, Surveillance and Prevention (includes epidemiology of tick-borne diseases);

2. Pathogenesis, Transmission, and Treatment;

3. Testing and Diagnostics (including laboratory-based diagnoses and clinical-diagnoses);

4. Access to Care Services and Support to Patients;

5. Vaccine and Therapeutics; and

6. Other Tick-Borne Diseases and Co-infections.

This is an on-line meeting that is open to the public. Members of the public may attend the meeting via webcast; instructions on how to attend will be posted one week prior to the meeting at https://www.hhs.gov/​ash/​advisory-committees/​tickbornedisease/​index.html. The meeting will be recorded. You must be registered to access the meeting. Register Here

Click here (and scroll down) to see Agenda for May 10th Working Group Meeting


Public Comment – Information and Instructions

The Working Group invites public comment on issues related to its charge. Comments are particularly welcome on issues related to the work of the six subcommittees that merit consideration in the Working Group’s Report to Congress and the HHS Secretary.

You have the option of verbal comment, written comment or both. Thus, if you provide verbal comment, you may also submit it as written comment or submit written comment on a different issue.

Verbal (by phone) comments:

To be considered for providing verbal comment, you must register for the meeting.
Requests to provide verbal comment must be submitted via email by May 3, 2018 Eastern Time to tickbornedisease@hhs.gov. In the Subject line please enter: Verbal Public Comment – May 10 Meeting.
A total of 60 minutes has been set aside for verbal comments. Each person will be limited to 3 minutes in order to accommodate as many speakers as possible.
If more requests are received than can be accommodated, speakers will be randomly selected. The nature of the comments will not be considered in making this selection.
We encourage you to practice your talk to ensure it fits within the allotted time.
Your remarks will be broadcast over a live webcast and will become part of the archived recording and meeting transcripts that will be posted on this website.

IMPORTANT: When you submit your request to provide verbal comment, please include a statement letting us know how you would like your comments to be identified. This information will be used during the meeting to link you with your comments. You may choose to use your name, or to be anonymous, and identify your city and/or state. If you are providing comments on behalf of an organization we will identify you and the organization, if you provide a statement requesting we include this information. Please be clear in your request to provide which of these options you would like us to use.

Written comments:

Written comments must be submitted via email by May 3, 2018 Eastern Time to tickbornedisease@hhs.gov . In the Subject line please enter: Written Public Comment – May 10 Meeting.
Comments should be no more than 4 pages in Calibri or Times New Roman, 11 point font. Text that exceeds the 4 pages will be deleted.
Written comments should either be provided in the body of the email, or in an attachment in Word format.
So that your comments meet federal government website standards for the visually and hearing impaired, please do not include
graphics, images, or text boxes. If included with your written comment, we will not be able to retain them. Simple tables are acceptable.
hyperlinks. If included, they will be unlinked. Instead, we suggest you insert the full URL (e.g., https://www.jscimedcentral.com/ClinicalCytology/clinicalcytology-3-1085.pdf)
Any highlighting or underlining of text will need to be removed. Any text that is in a color other than black will be converted to black.

IMPORTANT: When you submit your written comments, please include a statement letting us know how you would like your comments to be identified. This information will be used to link you with your comments. You may choose to use your name, or to be anonymous, and identify your city and/or state. If you are providing comments on behalf of an organization we will identify you and the organization, if you provide a statement requesting we include this information. Please be clear in your submission to provide which of these options you would like us to use.
Note: Unlike verbal public comment, which is presented by the requesting individual during a Working Group meeting, written public comment is not read during a meeting. Written comment will be provided to the Working Group before the meeting.


Click here for Federal Register Website

Click here for May 15-16 in-person Working Group Meeting – details to be announced


Background and Authority: The Tick-Borne Disease Working Group was established on August 10, 2017, in accordance with section 2062 of the 21st Century Cures Act, and the Federal Advisory Committee Act, 5 U.S.C. App., as amended, to provide expertise and review all HHS efforts related to tick-borne diseases to help ensure interagency coordination and minimize overlap, examine research priorities, and identify and address unmet needs. In addition, the Working Group will report to the Secretary and Congress on their findings and any recommendations for the federal response to tick-borne disease prevention, treatment, and research, and addressing gaps in those areas.