UPDATE TWO: Ethics Complaint - Lyme Corps Shows Preferential Treatment for IDSA This evening 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 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 March 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! Making the CDC responsive to the Lyme community is taking a lot of time and energy. So let me be clear, your support for and promotion of this petition is a very important. It will help hold the CDC accountable. However, 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 email me at lymepeacock@gmail.com for assistance. Now follows my ethics complaint… ***** ****** ****** ******* ****** ******* ******* March 7, 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: Elizabeth.Fischmann@hhs.gov 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 (NCG) because they do not meet the high evidentiary standards of the Institute of Medicine, they are outdated and fall short of NCG selection criteria. To note, I did not receive a response or acknowledgment from you regarding my February 5, 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 – http://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 dvbd@cdc.gov). 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 https://nphic.confex.com/cdc/nphic14/webprogram/Paper35413.html The 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 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 NCG because they do not meet the high evidentiary standards of 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 NCG, as they are science based, patient-centered and conform to criteria based on the high evidentiary standards of the Institute of Medicine. See link http://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 there are a number of OID, NCEZID and DVBD managers and staff who 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