The January 2 deadline for nominating those to one of six subcommittees for the Tick Borne Disease Working Group is quickly approaching.  For more info:  https://madisonarealymesupportgroup.com/2017/12/22/jan-2-deadline-for-tbd-subcommittee-nominees/

Also, the following article will interest you.  It offers a clear warning about suspicious wording regarding the working group and the concern for transparency and ability of members to be free to act according to their convictions.  Please read and send to those who you are nominating.

https://www.linkedin.com/pulse/warning-all-nominated-subcommittees-under-tick-borne-luche-thayer/?trackingId=TuDYP8rqUuaiIcIJR3VnCQ%3D%3D

WARNING to ALL NOMINATED for SUBCOMMITTEES under the Tick-Borne Disease Working Group

Jenna Luche-Thayer

Jenna Luche-Thayer

Friends,

As you may know, I have been concerned about the unnecessary restrictions that may be applied to those public members serving on the Tick-Borne Disease Working Group.

As previously stated, there is no legal requirement for these public members to be designated as ‘Special Government Employees’ who operate under the supervision and control of HHS when they can easily fulfill these responsibilities and remain independent of government control when they are designated as ‘Representative’.

I now have other concerns —they are related to the independence of the public members joining the Subcommittees for the HHS Tick-Borne Disease (TBD) Working Group.

Independence of the Public Members on Subcommittees

As I noted in my previous analysis regarding the TBD Working Group, an important statement was made During the December 12, 2017 public meeting. On December 12, 2017 Working Group members stated that public members on the Subcommittees “will be designated as Representatives and not as Special Government Employees.”

However, according to the text on the HHS Website, there are significant restrictions for these Subcommittee members —see ‘Updates Call for Nominations of Highly Qualified Individuals to Serve on Subcommittees to the Tick-Borne Disease Working Group’. https://www.hhs.gov/ash/advisory-committees/tickbornedisease/notices/index.html

Of particular concern is this statement:

“Subcommittees may not: take independent actions; make recommendations to Federal officials or agencies; nor release documents or reports directly to the public.”

The limitations of this statement remain unclear. However, it is similar to some of the restrictions assigned to Special Government Employees rather than Representatives as detailed in an earlier article. It may be widely interpreted and can be used to control the independence of the public members who join the Subcommittees.

For example, if you are a Subcommittee public member, you might not be able to undertake your normal advocacy role and make recommendations to the government to change the CDC Lyme disease propaganda.

Furthermore, it should be noted the Working Group will cover just about every TBD topic. However, it is unclear as to whether the restrictions for disseminating literature is solely for those documents and reports reviewed by your particular Subcommittee … or any document and report you plan to disseminate on the TBD topics covered by the Working Group.

The looseness of this language may be unintentional, however, consider it a red flag. This language needs to be very clarified —in writing— so that you do not find yourself compromised in your professional and public life outside the Subcommittees.

Transparency and Accountability

This loose language also supports on-going concerns as to the transparency and accountability of these Subcommittees.

Why? Because on December 12, there was no commitment made to share all the literature reviewed by the Subcommittees on the Federal Registry.

In other words, the public might not be informed as to what is shaping the deliberations of the Subcommittees and their recommendations to the Working Group if we do not have full access to what documents make up the basis for these deliberations.

For example, we may know of 85 percent of the documents but, for all we know, the 15 percent that remain hidden may have more weight in these deliberations than the known 85 percent.

This lack of transparency and accountability is, of course unacceptable, and I will be submitting formal public comments regarding the unnecessary obstacles —including transparency and accountability for the CDC’s TBD committee report offered at the December 12 public meeting.

More details for the Nomination Process

Excerpted from HHS webste, see https://www.hhs.gov/ash/advisory-committees/tickbornedisease/notices/index.html

However, should you be going through the nomination process, here are some more details you need to be properly processed.

“Nominations. Nominations, including self-nominations, of individuals who have the specified expertise and knowledge will be considered for appointment as subcommittee member.

1. Submit a coversheet with the following information:

a. Contact information including: name, title and professional affiliation (if applicable); other relevant organizational affiliations (if applicable); physical address that correspondence should be sent to, email address; and one or two phone numbers that can be used to contact you during business hours.

b. The following signed statement: “I am willing to serve as a member of any of the subcommittees that I have expressed interest in below. I will strive to conduct my work on any subcommittees informed by the best available evidence and the best interests of patients, families, and American communities affected by tick-borne diseases. [SIGNED / DATE]

2. Your answers to the following questions:

a. Which of these stakeholder groups are you a member of?

·       Health care provider

·       Public health professional (incl. federal, state, county and city)

·       Patient

·       Family member of a patient

·       Advocate

·       Other: _________________________________________

b. Which subcommittee do you want to serve on and have relevant knowledge or expertise to serve effectively?

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

·       Pathogenesis, Transmission, and Treatment

·       Testing and Diagnostics (incl. laboratory-based diagnoses & clinical-diagnoses)

·       Access to Care Services and Support to Patients

·       Vaccine and Therapeutics

·       Other Tick-Borne Diseases and Co-infections

c. Are you a federal employee?

·       Yes

·       No

d. Were you nominated to serve as a full Working Group member in response to the Federal Register notice?

·       Yes

·       No

e. If Yes, do you want to provide updated information or use the information you provided previously to serve on the Working Group?

·       I will provide updated information

·       I will not provide updated information

3. Please provide a copy of your resume or CV (not to exceed 10 pages)”

 

Faithfully,

Jenna 

Jenna Luché-Thayer

32 years working globally on the rights of the marginalized. Former Senior Adviser to the United Nations and US Government. Founder and Director of Global RBCC™ —Helping institutions recognize and respond to the pandemic of borreliosis diseases. Director, Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes. Founder, Global Network on Institutional Discrimination™ —Holding institutions accountable for political and scientific solutions. Email – jennaluche@gmail.com