(12th 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) We may need a Whistleblower to Address the Lyme Epidemic
By Jenna Luche-Thayer
April 6, 2016
Greetings from Jenna,
Let’s be clear, I do not consider myself to be a paragon of virtue and morality…and nor do my friends and family. However, something bigger than myself will always assert when I witness a situation where vulnerable creatures, human and otherwise, are mistreated. I am spurred to take action on their behalf. This is how I became a whistleblower in a federal agency.
I want to share this story because it is relevant to how the federal government is responding to the Lyme epidemic.
My whistleblower experience is more than two decades old. For a number of reasons I will not provide the names of the people and organizations involved in this whistleblower case. I will refer to the person charged in the case as Fusty. Here is additional background information:
(1) I have never been a federal employee; and
(2) I have worked on many federal programs and with a number of federal agencies.
It was a breach in a federal agency’s funding process that launched my whistleblower action. One of my tasks at this particular agency was to review and rank proposals, based upon publicized, concise and objective criteria. This agency division had a proposal season wherein proposals were submitted and reviewed. We would then determine which of these were worthy of funding. At the end of the proposal season we would rank all the proposals. The upper echelon made final determination and those funding decisions were then publicized.
week three of this proposal season we started getting very strange and ludicrous proposals. For example, one of the proposals we received showed no intention of benefiting the marginalized group we were to serve. Its objectives were (1) to debunk initiatives intended to support this marginalized group; and (2) reverse the findings of important studies that showed why support for this marginalized group would benefit society and the economy.Those federally funded studies that appear to be debunking the reality of persistent Lyme infection and co-infections remind me very much of those ridiculous proposals I reviewed 20 years ago. Those federally funded studies that have supported questionable or flawed methodologies designed to refute Lyme treatment options are also reminiscent of those wasteful proposals.
In my whistleblower case, we had a process that would objectively eliminate the absurd proposals. At first we found the situation to be amusing. However, our amusement became dismay when we found out that Fusty was funding these unworthy proposals. Not only was Fusty going against criteria and recommendations but Fusty was releasing monies before all the proposals had been reviewed and ranked. Fusty was in breach of almost all points of our process.
In this manner, three disturbing and retrogressive proposals were funded. Not only that, these proposals had gained the lion’s share of a limited resource. It then became known that these proposals were being generated by Fusty’s personal connections. The situation then appeared to be a case of waste, possibly fraud, preferential treatment and conflict of interest.
A number of us on the review committee were unhappy about
the situation. I asked some of my committee members to go with me to discuss the situation with the upper echelon. No one took me up on my offer. At the time, I could not really understand why my colleagues did not want to take action.
It is true that the funding amount for these proposals was not very high, particularly compared to other agency objectives. However, these limited funds were designated for a marginalized and deserving group. And so, with my better angels spurring me to action, I proceeded to discuss the situation with key federal employees in my division.
I started our conversations by citing the federal statutes that appeared to be violated. I did not expect the responses I received. The responses included, ‘Don’t be naïve’, ‘Do you have any idea how powerful Fusty’s friends are?’ and ‘Fusty could ruin us all.’ I then said that I understood the Office of the Inspector General would keep names and reports confidential. Eyes rolled. I was told not to report to the Inspector General.
Solo, I made the call to the Inspector General. Two days later, a team of investigators arrived at our office and started to take files. Fusty was escorted from the office and placed under supervision of a high-ranking official. Fusty was barred from representing the agency and had no access to any funding decisions or decisions of consequence.
The day after Fusty was escorted from our office, I was fired from my job for “unstated reasons”.
Apparently, Fusty’s removal from our office had generated calls to discover the identity of the whistleblower. Apparently, my name was volunteered. Let me be clear, by law the name of the whistleblower is protected and it was not the Office of the Inspector General that gave Fusty’s friends my name.
In addition to being fired, a campaign to discredit my character was started in earnest. It is not uncommon to see smear campaigns erupt against whistleblowers. Messages were disseminated throughout the agency claiming that I was conducting a secretive sexual liaison with a powerful person who was out to get Fusty. Furthermore, the reason this powerful person was out to get Fusty was because Fusty had spurned his sexual advances. Poor beleaguered Fusty. Therefore, my complaint to the Inspector General had nothing to do with malfeasance. I had been acting out in a fit of sexual jealousy and pique. Therefore you see, there was no waste and conflict of interest, it was simply a matter of a jealous woman creating trouble because she could not hold onto her man.
The story was blowing up all over the agency.
Fortunately for me, Fusty had left a clear paper trail documenting the waste and conflict of interest. In addition to the unworthy proposals, Fusty had undertaken other unethical actions. Ultimately, there were no criminal charges pressed against Fusty. Fusty was given the option to stay at the agency under strict supervision and with no access to funding decisions or decisions of consequence. Fusty left the agency.
And fortunately for me, I had never even met the man who was my secret lover and source of my jealousy. Eventually I was reinstated to my post. However, the smear rumors persisted and I heard variations of the rumors for a number of years.
One benefit of being in the center of a salacious story is that people become curious about
those named. Therefore, people who had never even talked to me became quite interested in my points of view and this provided more opportunities to advocate for this marginalized group. Within a few years of the scandal, there was an agency-wide shift to better policy attention, program integration, and more resources for this marginalized group.
As mentioned earlier, I was only one of a number of persons in the agency devoted to improving the status of this group. My whistleblower scandal simply helped raise the attention to and consideration of this marginalized group. I like to think the whistleblower scandal helped my colleagues strengthen the agency’s commitment to this marginalized group.
For me, this experience generated many questions and lessons learned. Number one, a whistleblower needs to be cautious, they should not share their concerns with their superiors or even their direct colleagues.
Number two, a whistleblower should very discreetly seek persons and organizations outside their institution that are sympathetic and supportive.
Number three, a whistleblower should carefully collect the relevant information and any possible documentation and carefully consider what institutions might best protect the whistleblower and pressure corrective action. For example, a respected and trustworthy investigative journalist might play a role. Independent legal counsel may be important. And, the Office of the Inspector General may or may not be the best choice.
Number four, a whistleblower should expect and prepare for backlash.
Number five, whistleblowers who are federal employees are often restricted with regards to the information and agency deliberations they can share. Therefore, such whistleblowers should anticipate the need to be subpoenaed in order to share all relevant information with the public.
Here are some of the questions the situation generated. How could one federal agency have people who tried to stop a whistleblower and others who appreciated the action? The answer is complicated. However, I think I understand some of the reasons for these different responses.
Persons working under Fusty were worried, and rightfully so, that they might also be considered part of the corruption. Just as those rumors followed me for years, rumors of corruption can follow an ethical and dedicated professional. Furthermore, not all corruption cases are perfectly handled. This can happen when the guilty party is skillful in covering their tracks and deflecting accountability.
I also learned that federal agencies are not monolithic, they are made up of individuals.
Among these, there are many who believe in what they’re trying to do and make a hard effort to do a good job. There are also cases where good people have precarious personal situations; sometimes such persons feel reporting against a superior will risk a job they cannot afford to lose. These groups of persons do not like to see their agency sullied by unethical and unlawful behavior. These persons appreciate corrective action.
Regarding the federal response to the Lyme epidemic, I well understand that the CDC is not a monolithic institution. I have met dedicated CDC staff in various countries doing important and credible work.
That being said, the promotion by the CDC of one private institution’s Lyme guidelines is a clear appearance of preferential treatment. The name of this private institution is the Infectious Disease Society of America (IDSA).
The IDSA promotes the view that Lyme disease is easy to diagnose and simple to treat with a limited course of antibiotics.
The National Guidelines Clearinghouse (NGC) house is “a public resource for evidence-based clinical practice guidelines.” The IDSA Lyme guidelines failed to meet the criteria of the NGC and were removed on February 12, 2016. The Health and Medicine Division (HMD) is part of the National Academies of Sciences, Engineering, and Medicine (the Academies). The Academies are nonprofit nongovernmental institutions that provide objective and independent analysis and advice to the nation. HMD has developed the evidence based standards for medical guidelines. The IDSA Lyme guidelines have also failed to meet HMG standards.
This appearance of preferential treatment for the IDSA by the CDC is further amplified by the following fact. Out of all the diseases addressed by the CDC, it is only Lyme disease wherein the CDC promotes one private institution’s medical guidelines. This is a strikingly unique and highly unusual situation.
To complicate matters further, both IDSA President Johan Bakken and Vice President Paul Auwaerter, are well known for the wrong reasons by the Lyme community. These “men of science” have written a decidedly unscientific article that mischaracterizes and discredits the Lyme community. This is the September 2011 Lancet Infectious Diseases Journal article called “Antiscience and Ethical concerns Associated with Advocacy of Lyme disease.” This article suggests that Lyme advocates can be characterized as a physical threat to true Lyme scientists and academics and that unknown, yet powerful and moneyed anti-science groups control and dispatch the advocates for nefarious purposes.
In addition, eight of the contributing authors served on the panel for the 2006 IDSA Lyme disease guidelines. These guidelines deny the possibility of persistent infection and do not provide practitioners nor patients treatment options. Furthermore, IDSA VP Auwaerter and other contributing authors have received payment for providing expert testimony in Lyme malpractice cases and/or acting as expert witnesses in several medicolegal cases concerning Lyme disease.These IDSA Lyme experts have recently shifted from calling the Lyme community dangerous to being quoted as indicating Lyme patients’ systemic symptoms may be hopelessly untreatable.
They indicate that the entire medical and scientific world may be unable improve the health of persons suffering from Lyme and co-infections. And now, another questionable study by ‘Lyme experts’ have added yet another spin. The latest spin is that Lyme patients have a better quality of life than the ‘average’ person.
Common underpinnings of these messages are questionable methodology and weak science. A second common denominator appears to be bias and distortion that does not advance science. Furthermore, these conclusions contradict; they appear to have a hard time keeping their stories straight.
These array of behaviors and affiliations by the CDC-touted Lyme experts are disconcerting. Formal ethics complaints to the CDC regarding preferential treatment for the IDSA have been met with silence. The over 700 peer-reviewed and published studies indicating and/or proving persistent Borrelia infection gather dust on CDC shelves. Patient and medical expert testimony and documentation regarding the improved health of patients from a variety of non-IDSA protocols remain ignored. The CDC appears to be insensitive to and dismissive of the Lyme community.
This disturbing constellation naturally leads Lyme patients and those who love them to question the core integrity of the CDC response to the Lyme epidemic. These behaviors on the part of the CDC appear nonsensical. Such nonsensical behavior in response to a devastating nationwide epidemic naturally generates speculation. Furthermore, it merits serious investigation.Significant amounts of federal monies have been dispensed for Lyme disease over many years. These tax dollars have not advanced treatment options. Compared to this reality, the monies wasted in my whistleblower situation appear trifling. Furthermore, when one compares the agency response in my whistleblower case to the lack of CDC’s corrective action, the CDC appears to be uncaring, misdirected, incompetent, corrupt or a combination thereof.
Again, let me return to my lesson learned that no organization is monolithic. I genuinely believe there are people, working in or with institutions under the US Department of Health and Human Services, who are very aware of how complex and debilitating Lyme disease and co-infections can be.
I also believe these same people are very uncomfortable with the situations they witness regarding the federal response to the Lyme epidemic. And, I’m quite sure, like many of my friends in different federal agencies, these persons know someone struggling with Lyme and co-infections.
Should any one of these ethical persons take on the role of a whistleblower, they will have the gratitude and concrete support of thousands upon thousands of Lyme patients and the wider Lyme community. It may well be that a whistleblower or two are needed to refocus tax dollars, jettison the dead wood and serve the public interest.
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=3672003
Link to 2nd article + thread: "CDC Rejects Evidence-based medicine for Lyme patients"www.healingwell.com/community/default.aspx?f=30&m=3672006
Link 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#m3675093
Links 5th article + thread: "CDC Lyme Policy Cripples Obamacare & Sanctions Insurance Discrimination"www.healingwell.com/community/default.aspx?f=30&m=3681041
Links 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=3683408
Links 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 8th article + thread: Ethics Complaints - CDC's Preferential Treatment for IDSA https://www.healingwell.com/community/default.aspx?f=30&m=3683427
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
Links to 10th article + thread: CDC Lyme Programs Routinely Flout Federal Procedureswww.healingwell.com/community/default.aspx?f=30&m=3683452
Links to 11th article + thread: Will the NPR Lyme News follow that of Gawker site Jezebel?www.healingwell.com/community/default.aspx?f=30&m=3683491