https://www.linkedin.com/pulse/action-request-lyme-community-fromgotcha-global-jenna-luche-thayer/

ACTION REQUEST for LYME COMMUNITY from GOTCHA! Global Oversight for Transparency against Corruption in Healthcare Alliance

Published on June 20, 2018
Jenna Luche-Thayer

ACTION REQUEST for LYME COMMUNITY from GOTCHA! Global Oversight for Transparency against Corruption in Healthcare Alliance

FRIENDS FROM ALL COUNTRIES!

I have ANOTHER URGENT ACTION REQUEST regarding Kristen Honey, the Vice Chair of the TICK-BORNE DISEASES WORKING GROUP.

This story gets more unbelievable!

Please read the complaint — and the information that follows it — and if you agree, AS SOON AS POSSIBLE, PLEASE:

(1) COPY the complaint located below and email it in (revisions are fine).

(2) Share this GLOBALLY on Facebook, websites, forums, etc., and word of mouth, and ask others to TAKE ACTION as well.

WE CAN DO THIS!

Thank you! from GOTCHA!

Cozette Moysa, USA contact <cocolake2015@gmail.com> Jenna Luché-Thayer, Global contact <jennaluche@gmail.com> Kristina Bauer, Communications Expert <mkbauer6@att.net>

********************COMPLAINT for IMMEDIATE ACTION************************

SAMPLE LETTER to COPY AND PASTE (revisions in your own words are fine) and send to the following addressees:

………………………………………………………………………………………………………………………………

To: james.Berger@hhs.gov, kaye.Hayes@hhs.gov, tynetta.Dreher@hhs.gov

cc: brett.giroir@hhs.gov

Dear Mr. Berger, Ms Hayes and Ms. Dreher,

According to statements on both the HHS website and on LinkedIn, Vice-Chair Kristen Honey of the Tick-Borne Diseases Working Group (Working Group) is not a federal officer, as required by the 21st Century Cures Act and the HHS legal Charter. This means the Working Group does not meet its basic legal membership mandate, as required by the 21st Century Cures Act.

Kristen Honey has potential conflicts of interests (COIs) and can be perceived as using her leadership position to incorporate the ‘Lyme Innovation’ brand into the activities and recommendations of the Working Group to Congress.

Past statements she has made concerning her plans to develop her patented Lyme disease treatment via the Lyme Innovation brand raise additional COIs.

Under the leadership of Kristen Honey for the past seven months, the lack of transparency of the Working Group has been evident and extremely problematic for the public.

In addition to the above stated concerns, an alarming lack of transparency has been a major issue for the Working Group since its inception last December.

Despite hundreds of public complaints to this issue and letters to HHS leadership, the Working Group has failed to comply with FACA transparency requirements.

Due to the above stated reasons, I am requesting that Vice-Chair Kristen Honey be removed immediately and permanently from all present and future member positions on the Tick-Borne Diseases Working Group.

Respectfully,

YOUR NAME

*************************************************************************************

BACKGROUND

ELIGIBILITY OF KRISTEN HONEY, COIS AND LACK OF TRANSPARENCY ON THE TICK-BORNE DISEASES WORKING GROUP

Numerous public complaints have been sent to HHS leadership regarding Kristen Honey, Vice-Chair of the Working Group. The receipt of these public complaints has not been acknowledged by HHS leadership and the issues surrounding the complaints have not been resolved by appropriate corrective action.

The eligibility of Vice-Chair Kristen Honey is under question, as she appears to be a ‘non federal employee’ and yet is occupying one of the seven required federal member positions on the Working Group.

There are potential conflicts of interest surrounding Vice-Chair Kristen Honey that have been identified by citizen stakeholders. There has been no response from HHS concerning the public comments regarding this issue.

The Working Group leadership has failed to meet the transparency requirements mandated by FACA. Numerous complaints have been sent to the Working Group and HHS leadership, with no response nor resolution.

Eligibility of Vice-Chair Kristen Honey

The 21st Century Cures Act requires the Working Group to contain seven federal employees/officers and seven non-federal members.[1] Kristen Honey was selected to occupy one of the federal employee/officer positions and is currently serving as Vice-Chair of the Working Group.

Honey’s eligibility to serve on the Working Group as a federal employee has been challenged by stakeholders because statements posted on the HHS website and on her LinkedIn page indicate her employment status does not meet the definition of ‘federal employee.’

Shortly after public complaints questioning Honey’s federal employment status were received by HHS, her bio on the HHS website was revised to state, “Dr. Honey is a Federal employee because she is ‘on assignment’ from Stanford University to the Federal government under the Intergovernmental Personnel Act.” [1]

This change appears to have been made in response to public complaints regarding her employment status and eligibility to serve on the Working Group.

A new link was also added to Honey’s revised HHS bio. The reference directs the reader to a page about the Intergovernmental Personnel Act Mobility Program (IPA), through which Honey has apparently secured a limited placement at her current worksite. [2] The inference of directing the viewer to the IPA link is that Honey is a ‘federal employee’ because she is working under an IPA assignment.

The site contains an extensive and detailed amount of information regarding the IPA program and can be confusing to anyone unfamiliar with federal personnel hiring practices. The link provides numerous details about the complicated IPA process of reassigning both federal and non-federal employees to both federal and non federal assignments.

Although Honey is working ‘on assignment’ via an IPA,, the statement inserted on her HHS bio and accompanying IPA link fail to support the claim that she is a ‘federal employee.’

The amended bio on the HHS website appears to intentionally misrepresent Honey as a ‘federal officer.’ It states that, “Dr. Honey is a Federal employee because she is on assignment from Stanford University to the Federal government and is working at the White House.”

The portion of the statement, “…she is on assignment from Stanford University to the Federal government…” not only fails to prove Honey is a ‘federal employee’ – it completely contradicts the preceding claim that she is a ‘federal employee.’

If the statement on her HHS bio is correct, Honey is an employee of Stanford University (not the federal government) and is working ‘on assignment’ from her employer to the federal government for a limited duration of time. Being an employee of Stanford does not prevent her from working for the federal government “on assignment” to the White House, but it prevents her from being classified as a ‘federal employee.’

In addition to the statement posted on the HHS website, Honey’s LinkedIn page corroborates the statement contained on her HHS bio. [3] Honey’s LinkedIn account clearly states that she is a Senior Policy Analyst at the White House “on assignment as a Senior Research Scholar from Stanford University, from Jan 2017 – Present.” She is also identified on the same page as being a Stanford University Affiliated Researcher from Sep 2012 – Present.

Based on the information provided and by federal definition of the term, Honey cannot be a ‘federal employee.’ Honey therefore fails to meet the basic requirement to be one of the seven federal employee members serving on the Tick-Borne Diseases Working Group, as mandated by the Cures Act and the HHS legal Charter.

For this reason, Honey must be removed immediately as Vice-Chair of the Working Group.

Any failure on the part of HHS leadership to take the immediate and appropriate action on this matter will jeopardize the entire process of the Working Group and all future Congressional recommendations made by this critically important advisory Committee.

NOTE: The content of the HHS TIck-Borne Diseases Working Group website is created and maintained by the HHS Office of HIV/AIDS and Infectious Disease Policy.

COIs – A Private Brand and Future Treatment Products

Concerns over potential COIs surrounding Vice-Chair Honey and others have been expressed, both in social media, and in public comments. The Working Group leadership has demonstrated a lack of dedication to two-way communication with interested stakeholders and with FACA-mandated transparency. For these reasons, HHS leadership must be made aware of the all potential COIs of the Working Group and take any and all appropriate corrective actions.

There are strict provisions in federal Criminal Conflict of Interest Laws (18 U.S.C., Sections 201-209) that prohibit a federal employee/officer from working on government matters in which the federal official may be holding a special interest. [4] Non-federal employees are held to the same ethics standards as federal employees.

Section 208 – Specifically prohibits the employee from working on government matters that will affect their own personal financial interest, or the financial interests of others, including an organization in which the federal employee is serving as an officer, director, trustee, general partner or employee.

Section 209 – Prohibits a federal employee from receiving their federal salary from anyone but the government, as compensation for their services as a government employee. The acceptance of payment from a private organization to a government employee for any service (such as a speaking engagement) to the organization is prohibited. This section of the law is written to prevent any divided loyalty and equally as important, even the appearance of wrongdoing.

Section 201 prohibits the federal officer from receiving any gifts or gratuities from a private entity, such as an organization, for an official act that has already taken place or may take place in the future.

A few members of the Working Group have been involved in branding endeavor that appears to be linked with potential future COIs. The brand Lyme Innovation was co-founded by Kristen Honey and launched with the 2016 and 2017 Lyme Hackathons prior to her becoming Vice-Chair. [5] [6]

To NOTE: John Aucott was also actively involved with Lyme Innovation before accepting his leadership role as Chair of the Working Group. Some individual members of the Working Group and other entities, including prominent Lyme advocacy organizations, have also been involved with the brand. [7]

Lyme Innovation co-founder Honey is apparently using the Lyme Innovation brand for fund-raising and also, to promote her personal patented “novel IV nano-mineral solution” which she refers to as her “lynchpin for Lyme recovery.” [8]

The Lyme Innovation brand is being used by Vice-Chair Honey to give public presentations concerning the Working Group and its activities. [6] One such presentation was recently conducted at the Midcoast Maine Lyme Disease Support and Education Conference this past April. [7] [8]

Honey has written that Lyme Innovation was developed “to catalyze next-gen solutions for Lyme disease.” [9]

This raises concerns about potential COIs between Lyme Innovation and the activities and future recommendations of the Working Group. It is particularly concerning since Honey, a cofounder of Lyme Innovation, occupies the second most influential position on the Working Group and takes an active role in conducting the meetings.

The process of associating Honey’s private-label Lyme Innovation brand with the activities and goals of the federal Working Group may serve to create an indiscernible merger between a private-brand and the federal advisory group.[10]

This obvious COI must be addressed and corrected by HHS leadership because it has potential to build a public perception that the federal government condones and endorses all items and actions associated with Lyme Innovation.

In fact, the brand is already being promoted by Vice Chair Kristen Honey and embraced by Lyme Disease Association (LDA) and Lyme Disease Organization (LDO), the two largest national Lyme advocacy groups, whose leaders and members also constitute the largest block of ‘patient advocates’ serving on the Tick-Borne Diseases Working Group and its Subcommittees.

There exists a potential that Honey’s leadership position, along with other Working Group members who are, or have been, involved with Lyme Innovation, could be used advantageously to create opportunities for individual and/or organizational wealth enhancement in the future.

Statements were made in Kristen’s honey2healing.org website (under ‘Book”) containing the following direct quote:

“…the novel IV nano-mineral solution, which Dr. Honey pioneered and calls her ‘lynchpin’ for Lyme recovery and thriving wellness—has been patented using open-source intellectual property (IP)…If you or your organization wish to support Dr. Honey’s vision to bring this IV nano-mineral solution to market through open-source medicine, we welcome contributions and collaborations.” [11]

To NOTE: A screenshot of the above statement was taken prior to a publication of article.

Interestingly, the above statement was removed from public view on the honey2healing.org website, possibly in response to a May 22, 2018 LinkedIn article (published and referenced to this website.)

The Working Group is a federal advisory committee whose sole purpose is to assess and make recommendations to Congress concerning federal agency health policies on tick-borne diseases.

The Lyme Innovation brand and any related associations cultivated before or during the Working Group between Vice-Chair Honey, the Voting Group and Subcommittee members, investors (individuals and/or advocacy organizations), proposed/developing/currently available products involved with tick-borne diseases —must not be used for marketing opportunities that are linked to the Working Group.

The Working Group must not be misused —by its leaders or members— as a taxpayer-funded public advertising platform to enhance future sales or monetary gain.
Transparency and Non-Compliance with Federal Advisory Committee Act (FACA)

The first meetings of the Working Group were held on December 11-12, 2017. Although the Working Group is governed by FACA, a profound lack of transparency on the part of its leadership has been a serious and continuing problem.

The Working Group has been extremely slow and in some cases, has failed entirely, to publish the required recordings/minutes/notes of the Working Group and Subcommittee meetings in a timely manner. Despite many public requests and complaints, citizen stakeholders were forced to wait months before the Working Group released the recordings of its December 2017 meetings.

Since Feb 2018, individual Subcommittee meetings were held unannounced and unreported to the public. Notes from the many Subcommittee meetings were not made available to the public for up to four months, until they were finally released, only 6 days before the Working Group’s Public Meeting scheduled for May 15-16. The electronic recordings and transcripts of the Working Group meetings held in May (over 5 weeks ago) have still not been released for public viewing.

FACA requires federal advisory groups to provide transparency of their activities to allow for public comment and discourse. The failure to provide videos and meeting minutes of the Working Group and meeting notes of the Subcommittees in a timely manner served to prohibit meaningful public comment. The failure to provide content in a transparent and timely manner has interfered with the public’s legal rights to have access to the same material as the federal stakeholders; and this violates the intent and practices of FACA.

As previously discussed, citizens were not allowed to know what was being researched, discussed and accomplished in the closed-door meetings of the Working Group and its Subcommittees. The lack of transparency prompted hundreds of public comments to the Working Group.

No response, nor release of information was forthcoming from the Working Group for many months, so stakeholder complaints were eventually directed to HHS upper-level leadership and the federal officer in charge of FACA complaints. No response, nor acknowledgement of receipt of these communications, were received in answer to the complaints.

More than 1000 public comments with requests to be placed into the public record (the actual number is unknown) have been sent to the Working Group. These stakeholder comments have not been made accessible for public review, despite hundreds of follow-up requests asking for the public comments to be released. In addition, only a small number of the 1000+ public comments have been made accessible to the members of the Working Group.

Despite promises of providing transparency, the line of communication between the Working Group members and private citizen stakeholders was deliberately severed by the Working Group leadership from the very beginning.

Reports have been received that communication within the membership of the Working Group and the Subcommittees has also been forbidden and monitored by the Committee’s leadership.

The enforced secrecy and withholding of information to the public about the activities of the Working Group is antithetical to the FACA requirements designed to ensure transparency of advisory Committees.

The subject of the transparency issue brought forth by the public was raised and discussed within the Working Group and at least, in the Access to Care Subcommittee. One member who expressed concern about the Working Group’s lack of transparency with Chair John Aucott and Vice-Chair Kristen Honey – was soon thereafter, verbally informed she was terminated. She has never received the required written statement of her termination. The proper procedure to terminate her was not followed by Chair John Aucott and therefore, she has been illegally blocked from rightful participation in her subcommittee activities.

Conclusion

Several letters from Lyme advocacy leaders and private citizens have been sent to the Working Group membership, HHS leadership and the FACA officer regarding the issues previously discussed. Little to no response, nor even acknowledgement of receipt of the letters has been received.

For the most part, HHS leadership has turned a deaf ear and a blind eye to the complaints from concerned citizens regarding the continuing mismanagement of the Working Group and the apparent disregard for the concerned public.

The lack of action on the issues raised to HHS leadership through vigorous public comment directed to the Working Group, and letters directed to HHS leadership, has the potential to result in a complete invalidation and repudiation of the Congressional recommendations of the Working Group in the future.

The failure by HHS leadership to take immediate and decisive action to correct these very serious issues will be recognized now, and in the future, as being a great disservice to the honorable and ethical members of the Tick-Borne Diseases Working Group, the Lyme community and the general public.

The importance of the Tick-Borne Diseases Working Group and its impact on the health and the economy of our nation cannot be understated. Nearly every person in the US is ‘at risk’ from tick-borne diseases. Countless thousands have been severely harmed and are still suffering from these diseases, while the tick population and spread of infections continue to expand at an exponential rate.

 

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1. https://www.hhs.gov/…/tickbornedis…/about/charter/index.html

2. https://www.opm.gov/…/hirin…/intergovernment-personnel-act/…

3. https://www.linkedin.com/in/kristenhoney

4. https://oge.gov/…/$FI…/8f14c1b877a3426e9be1bca3e42d7d921.pdf

5. http://lymeinnovation.org/mentors/kristen-honey/

6. http://lymeinnovation.org

7. http://lymeinnovation.org/lyme-innovation/

8. http://honey2healing.org/news-events/

http://honey2healing.org/…/2…/05/Honey-LymeAid2017-FINAL.pdf

9. https://www.linkedin.com/in/kristenhoney (see under Policy Advisor)

10. https://twitter.com/MLDSEmaine/status/992895501560360960

11. http://honey2healing.org/book/

Note: The written text from which this quote is derived appears to have been removed from this website after portions were quoted and referenced in a May 22, 2018 LinkedIn article was written and posted by Jenna Luché-Thayer and was subsequently circulated on social media. (A screenshot was taken of the statement, prior to its subsequent removal.)