(8th of 20 or so Jenna Luche-Thayer articles I'm posting - I started with her most recent articles but now I'm going back in time and posting several other articles she has created - also posting in its entirety since some might not want to access through LinkedIn)
I Filed Ethics Complaints because the CDC Shows Preferential Treatment for IDSABy Jenna Luche-Thayer
March 21, 2016
/www.linkedin.com/pulse/i-filed-ethics-complaints-because-cdc-shows-treatment-luche-thayer?trk=mp-reader-cardGreetings from Jenna,
This morning I want to share with you one of the efforts I've made to hold the CDC accountable to the Lyme community. I have been submitting ethics complaints against the Lyme Corps program.
Why an ethics complaint? Because government employees and agencies do not like ethics complaints. For example, a regular letter from the public, no matter how well written, does not require any real review, substantive response or commitment on the part of the agency.
On the other hand,
when ethics complaints are filed, the organization is required by law to make a review process. And, this process must be documented. Therefore, one effective way to encourage an organization take your concerns seriously is too [sic] have many, many, many, many, many people file their individual ethics complaints on the same topic in the certain timeframe. For example - 30 ethics complaints from 30 different individuals regarding Lyme Corps during the month of May 2016 – will mightily irritate a lot of bureaucrats! It will also force attention to Lyme Corps, make for significant documentation that can be referenced for other demands, and hopefully transform Lyme Corps into a program that actually protects and serves our public health!
Some of you might want to hold the CDC accountable by making ethics complaints. I don't know about
you, but as someone who suffers from Chronic Lyme, I find my energy can be thin and my time is taken up with a lot of health maintenance! So if you are interested in filing an ethics complaint against Lyme Corps, in order to save your time and energy I will provide you an ethics complaint template and assistance. Please contact me for assistance. Now follows my ethics complaint…and the response from HHS.
***** ****** ****** ******* ****** ******* ******* **** ****** ******
COMPLAINT - XXXX 2016
US Department of Health and Human Services
Office of the General Counsel
Elizabeth J. Fischmann
Associate General Counsel, Designated Agency Ethics Official
200 Independence Ave. S.W., Room 700-E, Humphrey Building
Washington, D.C. 20201
E-mail:
[email protected]Subject: Appearance of preferential treatment in violation of federal ethics statutes by Rima Khabbaz, MD, Deputy Director for Infectious Diseases and as the Director of Office of Infectious Diseases (OID); Beth Bell MD, Director of the National Center for Emerging and Zoonotic Infectious Diseases (NCEZID), Centers for Disease Control and Prevention (CDC), Fort Collins, CO; C. Ben Beard, Branch Chief, Bacterial Diseases Branch (BDB) of Division of Vector-Borne Diseases (DVBD) under CDC/NCEZID; Christina Nelson, MD, MPH, FAAP, Medical Epidemiologist, CDC/NCEZID/DVBD/BDB
I am Jenna Luche-Thayer, a US citizen living with Stage 3 Lyme and actively helping others whose lives are being devastated by the Lyme epidemic. I am informed by three decades of professional experience in over 40 countries. My areas of expertise include government transparency and accountability and the integration of marginalized groups across all sectors, including health. I have assessed and evaluated numerous US federal government programs. I have also worked on classified federal programs and publications.
I respectfully submit, via this second email communications, my ongoing concerns regarding the ethical standards of the CDC/OID/NCEZID/DVBD/BDB Lyme Corps program and its leaders, managers and implementers. These key actors are Rima Khabbaz, Beth Bell, C. Ben Beard and Christina Nelson.
This second communications has been prompted by a significant status change: On February 12, 2016, the Infectious Disease Society of America (IDSA) Lyme Guidelines were removed from the federal National Guidelines Clearinghouse (NGC) because they do not meet the high evidentiary standards of the Institute of Medicine, they are outdated and fall short of NGC selection criteria.
To note, I did not receive a response or acknowledgment from you regarding my XXXX 2016 Ethics Complaint - Subject: Possible violation of CDC ethics rules by Beth Bell MD, Director of the National Center for Emerging and Zoonotic Infectious Diseases (NCEZID), Centers for Disease Control and Prevention (CDC), Fort Collins, CO; C. Ben Beard, Branch Chief, Bacterial Diseases Branch (BDB) of Division of Vector-Borne Diseases (DVBD) under CDC/NCEZID; Christina Nelson, MD, MPH, FAAP, Medical Epidemiologist, CDC/NCEZID/DVBD/ BDB
BACKGROUND
On January 11, 2016, I received information about
a poster seen at Johns Hopkins University, a private research university in Baltimore, Maryland. Poster excerpts include “Time to Talk about
Lyme Disease Talk… Christina Nelson, MD, MPH will introduce the CDC… highlighting their work in Lyme disease…Dr. Nelson will also talk about
Lyme Corps, an exciting new CDC program for Johns Hopkins University students and residents.
See link –
www.jhsph.edu/offices-and-services/practice-and-training/news-and-events/_documents/CDCLymeCorpsFlyer_09-29-2014_FINAL.pdf I determined that gaining details about
the Lyme Corps program was a priority. However, I found that Lyme Corps does not conform to federal standards for transparency of non-classified activities.
- Unlike most CDC outreach programs, Lyme Corps has no reference link on the CDC website.
- Persistent calls to 800-CDC-INFO engaged information specialists who did not provide information on Lyme Corps or provide to phone number to the division implementing Lyme Corps.
- Web research uncovered the DVBD phone number (970) 221-6400 on a brochure link found on the DVBD factsheet (see
[email protected]).
- General inquiry calls to the DVBD staff - including Dr. Nelson- from a member of the general public for general program information resulted in no information about
Lyme Corps.
Later internet searches uncovered a Lyme Corps poster presented at the 2014 CDC Health Communication Marketing and Media Conference. See link
/nphic.confex.com/cdc/nphic14/webprogram/Paper35413.htmlThe poster provided references to the TICKBORNE DISEASES OF THE UNITED STATES - A Reference Manual for Health Care Providers First Edition, 2013. This manual is central to the training material used by Lyme Corps.
EXAMPLE of PREFERENTIAL TREATMENT for the IDSA
This manual and other Lyme Corps training materials promote the IDSA Lyme Guidelines and entirely omit other sanctioned Lyme Guidelines, such as the International Lyme and Associated Diseases Society (ILADS) Lyme Guidelines.
The IDSA guidelines promote the view that Lyme disease is easy to diagnose and simple to treat with a limited course of antibiotics. As noted, on February 12, 2016, the IDSA Lyme treatment guidelines were removed from the federal NGC because they do not meet the high evidentiary standards of the Health and Medicine Division (HMD - formerly known as the Institute of Medicine) they are outdated, and they are based on expert opinion rather than scientific evidence.
On the other hand, ILADS Guidelines recognize that Lyme disease is a complex and serious illness of epidemic proportion and offers individualized patient-centered treatments. It should be noted that ILADS guidelines are posted on the federal NGC, as they are science based, patient-centered and conform to criteria based on the high evidentiary standards of the HMD. See link
www.guideline.gov/content.aspx?id=49320&search=lyme+disease+and+ilads+guildlines CONCLUSIONS
The CDC has a well-deserved reputation for agile and rapid responses to health crises. CDC websites and documentation are quickly updated to reflect emerging knowledge and public health messages. However, this reputation of the CDC is not evident in the Lyme Corps program.
I understand
all the Directors in the chain of command for the OID, NCEZID and DVBD are members of the IDSA. Their affiliations with the IDSA would explain why the Lyme Corps program makes preferential use of the outdated, substandard and defunct IDSA Lyme Guidelines and entirely omits the sanctioned ILADS Lyme Guidelines. Such preferential treatment and even the appearance of such preferential treatment for the IDSA guidelines violates the legal statutes defined in the Standards of Ethical Conduct for Employees of the Executive Branch:
Standards of Ethical Conduct for Employees of the Executive Branch, Final Regulation Issued by the U.S. Office of Government Ethics Codified in 5 C.F.R. Part 2635 As amended at 76 FR 38547 (July 1, 2011)
- Employees shall act impartially and not give preferential treatment to any private organization or individual. (page 2 subparagraph 8)
- Employees shall endeavor to avoid any actions creating the appearance that they are violating the law or the ethical standards set forth in this part. Whether particular circumstances create an appearance that the law or these standards have been violated shall be determined from the perspective of a reasonable person with knowledge of the relevant facts. (page 2 subparagraph 14).
In summary, under the circumstances outlined, the on-going preferential treatment for the IDSA in the Lyme Corps program raises obvious flags regarding the impartiality of Rima Khabbaz, Beth Bell, C. Ben Beard and Christina Nelson. This preferential treatment for the IDSA leads to a Lyme Corps program that promotes outdated and substandard Lyme treatments. Preferential treatment for the IDSA creates a Lyme Corps program that threatens, rather than protects, the health and welfare of the US public.
I look forward to your timely investigation into this matter and response. Please contact me should you have any questions or if I can be of further assistance.
Thank you very much,
Jenna Luche-Thayer
Cc: Sandra Cashman, Acting Executive Secretary, Office of the Chief of Staff, CDC
Corinna Zarek, Senior Advisor to the CTO-Office of Science and Technology,
open Government Melissa Goldstein, Assistant Director, Precision Medicine and Bioethics, Office of Science and Technology
Chuck Young, Managing Director of Public Relations GAO
RESPONSE FROM HHS to ETHICS COMPLAINT
On XXXX 2016 I received a response from a legal division at Health and Human Services (HHS) for the ethics complaint I filed on XXXX 2016. The response came with a warning that it could not be shared for various reasons and so I will avoid that trap. However, I will share my response to their response. Please see below.
Subject: Appearance of preferential treatment by CDC/NCEZID/DVBD/BDB in violation of federal ethics statutes and transparency concerns
Good evening XXXXX,
I hope you are well. I appreciate your acknowledgement of my two correspondences dated XXXX 2016 and XXXX 2016 regarding the appearance of preferential treatment for the Infectious Disease Society of America by CDC/NCEZID/DVBD/BDB.
I am encouraged to know that your professional legal expertise was applied to the review of these two correspondences and that this resulted in their being forwarded to the appropriate office within the Department for further action.
In order to streamline and focus my communications on this matter, I would appreciate your providing me the contact information of this appropriate office and the name of the person(s) who is responsible for further action. Also, please confirm as to whether this office has investigative authority regarding ethics complaints.
While I have your attention, please let me know where I should sent my concerns regarding the lack of transparency surrounding the Lyme Corps program. As stated in my XXXX 2016 correspondence I have assessed and evaluated numerous US federal government programs. I have also worked on classified federal programs and publications.
When I worked on non-classified programs funded by the U.S. Agency for International Development, the U.S. Department of Justice and the U.S. Department of Agriculture, I found accessing general information about
active federal programs to be straightforward. This general information is, by law, accessible to all members of the public. General information includes: the program descript
ion and what it plans to accomplish, the geographic areas where the program is being implemented, when activities will be implemented, annual and quarterly reports, assessments and evaluations of the program, the annual funding and overall budget, the names of partner institutions and the numbers of intended clients or beneficiaries.
The CDC Lyme Corps is an active non-classified program; its implementation began in 2013 and it appears to be on-going. However, unlike most CDC public outreach programs, Lyme Corps has no public reference links on the CDC website. In January 2016, I called the Division of Vector-Borne Diseases (DVBD) as a member of the general public to make general inquiries. The DVBD staff called, including Lyme Corps epidemiologist Cristina Nelson, did not share any information about
Lyme Corps. Nelson did ask me who I was and what organization I represented. One person asked I submit a written request from my affiliated institution to gain this general information. It is highly unusual for the DVBD to demand a formalized written request for general program information.
As we both know, there are circumstances where information is restricted. For example, information is highly controlled when government activities are classified. Activities can have differing levels of classification and are classified for a number of reasons. There are stringent rules that govern public access to information about
classified federal programs and publications.
However, there are also stringent rules that govern public access to information about
non-classified federal programs and publications. Lyme Corps is not a classified program. Lyme Corps is a public outreach program that is supposed to educate health care providers and the public about
Lyme disease. As such, general information about
an active non-classified program does not require a Freedom of Information Act (FOIA) request or depend upon giving personal information such as institutional affiliations. Such profiling is absolutely irrelevant for public access to general program information.
Please note, I have found only one CDC web link to the Lyme Corps program and that is a Lyme Corps poster from the 2014 Atlanta, GA Conference Health Communication/Marketing Conference. See
linkhttps://nphic.confex.com/cdc/nphic14/webprogram/Paper35413.html There are no public CDC links to the Lyme Corps programs implemented at John Hopkins University (2014), University of Vermont (2014), University of Maryland Baltimore (2015) or James Madison University and University of Virginia (2015). These Lyme Corps activities were discovered by broad web searches.
For a truly odd experience, I suggest you web search: Nursery plant sale advertising flyer - Johns Hopkins
This is the website where I found the Lyme Corps poster seen at Johns Hopkins University.
I suggest you then web search:
www.jhsph.edu/offices-and-services/practice-and-training/news-and-events/_documents/CDCLymeCorpsFlyer_09-29-2014_FINAL.pdf and you will see this poster has a left corner tag that says Nursery plant sale advertising flyer.
In addition, the Lyme epidemic is not only devastating lives, it is very costly. A 2015 publication in the Public Library of Science estimated that medical costs generated by Lyme, over a one year time period, to be an additional $712 million to $1.3 billion a year. [Ref 1] Survey findings in the 2011 Health Policy Journal publication found that “a quarter of [Lyme patients] respondents had been on public support or received disability benefits due to Lyme disease symptoms.” [Ref 2] An April 2006 publication in Emerging Infectious Diseases showed the direct and indirect costs of Lyme disease averages $8,172 per patient, or $10,769 when adjusted for inflation. [Ref 3] The annual costs of 300,000 new cases per year can be calculated at more than $3.2 billion.
The amount of tax money supporting Lyme Corps should be readily accessible to the public. Why would any public health communication program have such restricted access to general program information? For example, information on the CDC public health communications programs for the vector-borne Zika virus and West Nile Virus are widely promoted via the CDC website, social media and traditional media.
Altogether, these many transparency irregularities make Lyme Corps appear secretive. Therefore, I would very much appreciate you directing me to the proper office and persons who address such transparency issues. As I understand the law and the spirit of
open government, Lyme Corps does not conform to federal standards for transparency of non-classified activities.
I look forward to your response. Please contact me should you have any questions or if I can be of further assistance.
Thank you very much,
Jenna
Ref 1 - Health care costs, utilization and patterns of care following Lyme disease 2015 written by Emily Adrion, MSc; John Aucott, MD; Klaus Lemke, PhD; and Jonathan P. Weiner, DrPH - Johns Hopkins Bloomberg School of Public Health
Ref 2- Healthcare access and burden of care for patients with Lyme disease: A large United States survey, Health Policy Journal September 2011 authors Lorraine Johnson, Alexandra Aylward, Raphael B. Stricker Volume 102, Issue 1, Pages 64–September
Ref 3- Economic Impact of Lyme Disease 2006 Xinzhi Zhang, Martin I. Meltzer, César A. Peña, Annette B. Hopkins, Lane Wroth, and Alan D. Fix
Biography:
Jenna Luché-Thayer’s expertise includes government transparency and accountability and the integration of marginalized groups. Luché-Thayer is informed by three decades of professional policy and grassroots experience in 40 countries. She has extensive experience in congressional relations, testimony and legislation. She has worked with governments, the United Nations, nonprofits and the corporate world and has over 65 sponsored publications. Luché-Thayer received the International Woman’s Day Award for Exemplary Dedication and Contributions to Improving the Political and Legal Status of Women (US government) and built the Highest Ranking Technical Area in Accomplishment, Innovation & Comparative Advantage for United Nations Capital Development Fund.
Her other articles:
Link to 1st article + thread: "CDC Sabotages State laws to protect Lyme patients"
www.healingwell.com/community/default.aspx?f=30&m=3672003Link to 2nd article + thread: "CDC Rejects Evidence-based medicine for Lyme patients"
www.healingwell.com/community/default.aspx?f=30&m=3672006Link to 3rd article + thread: " CDC Evades accountability in Lyme epidemic"
www.healingwell.com/community/default.aspx?f=30&m=3672010 Link to 4th article + thread: "Lyme Patients Stigmatized and Scapegoated with Federal Support:
www.healingwell.com/community/default.aspx?f=30&m=3675093&g=3675093#m3675093Links 5th article + thread: "CDC Lyme Policy Cripples Obamacare & Sanctions Insurance Discrimination"
www.healingwell.com/community/default.aspx?f=30&m=3681041Links to 6th article + thread: Mar 17, 2016 - Update 7A - Lyme Corps Assessment Brief, part 1 of 2:
www.healingwell.com/community/default.aspx?f=30&m=3683408Links to 7th article + thread: Mar 18, 2016 - Update 7B - Lyme Corps Assessment Brief, part 2 of 2:
www.healingwell.com/community/default.aspx?f=30&m=3683417 Links to 9th article + thread: Comments from YOU Regarding Lyme Corps & CDC's Lyme Failures
https://www.healingwell.com/community/default.aspx?f=30&m=3683435 -p
Post Edited (Pirouette) : 8/14/2016 2:51:39 PM (GMT-6)