Report on Human Rights Abuse of Lyme Patients Supported by Denmark’s TV2

The full version can be found in this LinkedIn post by the author, Jenna Luché-Thayer. The original letter was sent to 250 recipients, including the Danish ministries for Culture, Health, Justice and to Zembla. The Golden Nymph Award Committee in Monte Carlo, which is considering to award the prize for ‘Best Documentary’ to it, is also informed.

TV2 is given until Saturday October 28th to make specific amends. If they don’t, they will be reported for human rights abuse to the Special Rapporteur of the United Nations (UN) responsible for health and human rights, other UN bodies and other relevant institutions.

Status of Ethical practices, Poor Financial Management, Government Messaging and An Uncertain Future 

Several reports on the status of Ethical practices are cited to assess the situation of TV2. In general, 90% of the Danish journalists are well aware of their professional code of ethics, yet report breaches of it on a weekly base. Reasons to compromise on press ethics include lack of time to complete work, pressure from an editorial director or other management, competition among journalists inside the workplace and competition with other media. 

According to a 2008 report by Freedom House —Freedom of the Press 2008: A Global Survey of Media Independence— Danish media has struggled with both poor financial management and independence. In March 2007, Danish Broadcasting Corporation (DR) faced funding crisis. Employees forced program cancellations when financial mismanagement threatened workforce cuts —the employees were concerned the reduction would lead to lower quality reporting.

These concerns were addressed in a questionable manner. DR’s senior management was replaced, but approximately 300 jobs held by many concerned with quality were eliminated.

A version of the painful transition by DR may be visited upon TV2 and it can certainly be said that the future of TV2 is not settled. TV2 is a privately run, but government-owned television network —this creates conditions whereby government may exert unwarranted influence on TV2.

Like DR, TV2 also has a history of financial struggles —the European Commission approved rescue aid of $183 million with the understanding that TV2 refrained from launching new radio and TV channels. A May 2009 official government committee report found the TV2 financial mismanagement to be largely the fault of the board of directors.

However, the salary of state-owned TV2 directors has exploded. On average, [TV2] management gets twice as much as DR’s directors. Since 2009, the average executive pay in state-owned media business has increased by 57 percent, while it has increased by 9 percent in DR’s Executive Board.

“I cannot see what has changed in the size of TV2 or the task that can justify such a high wage increase,” says Anders Drejer, a professor at the Department of Economics and Management at Aalborg University. Culture Minister Mette Bock, who approves TV2’s accounts on behalf of the state, did not want to comment on the wage level.

Government Messaging Surrounding Lyme borreliosis 

The WHO has recognized Lyme borreliosis (LB) as a multi-region ‘disease of consequence’ for decades. In August 2017, the European Centre for Disease Prevention and Control (ECDC) published a handbook and manual tool for the prioritization of infectious disease threats that includes LB among the 30 most threatening diseases for public health.

LB was selected as one of 30 diseases deemed a “serious cross-border threat to health” according to Decision 1082/2013/European Union. This decision defines such diseases as “life-threatening or otherwise serious hazard to health of biological origin, which spreads or entails a significant risk of spreading across the national borders of Member States, and which may necessitate coordination at Union level in order to ensure a high level of human health protection”. A subsequent risk ranking exercise included criteria such as the economic impact of the disease, the individual level of discomfort caused by a disease episode, and the case fatality.

The cost of the LB epidemic has remained under-examined. The true suffering has unknown costs —but studies indicate costs to be in the millions for employers and billions for certain national economies. For example, based on the Centers for Disease Control and Prevention’s (CDC) conservative estimate of annual LB infection in the USA, their 2017 article on persistent infection and their 2006 study on the cost of Lyme disease, the roughly 380,000 new LB infections each year cost more than 4.09 billion dollars annually.

This calculation of 4.09 billion dollars does not include the estimate that 36 percent of those infected will develop long-term illness that is often not covered by insurance or national health systems that deny the serious nature of the disease, or the loss of productivity and increased liability and work-related accidents from compromised eyesight, hearing, cognition, judgement and poor balance quite common to LB.

Corruption

Numerous sources state that Denmark is a low-corruption country. Nevertheless, members of the Danish medical system continue to flirt and build relationships with these insurance and pharmaceutical/medical industries. These relationships may account for the increasingly questionable behaviors infiltrating the Danish health authorities and medical system.

For example, in 2010 the Danish health authorities had Dr. Court Pedersen advise medical practitioners on how to treat LB —Pedersen receives financial support from MSD, Roche, GSK, Boehringer Ingelheim, Swedish Orphan (or Sobi), Janssen-Cilag (Tibotec), Gilead, Abbott, BMS, GSK, Roche, MSD, Pfizer, Schering-Plow and is a member of the Institute Council, Statens Seruminstitut.

Practices that create corruption vary; Transparency International (TI) Denmark defines corruption as “misuse of trusted authority for own sake”. TI Denmark finds “corruption is a problem because it … dilutes confidence in democracy’s main institutions and violates fundamental equality principles. TI Denmark notes that “studies show that there is a close correlation between the perceived corruption and the actual corruption.”

The government of Denmark’s’ management of the LB epidemic appears to prioritize the rationing of health care costs over universal health care for all citizens, regardless of economic circumstances. Evidence of these practices is that the Health Authority has allowed its 2006, 2010 and 2014 clinical practice guidelines for LB to be contaminated by unethical conflicts of interest (COIs) and have done nothing to correct this situation.

Promoting personal profits

An example that indicates this corruption is that of Klaus Hansen, an LB guidelines author, is also one of the Lyme test inventors. Hansen admitted he earns royalty money on every sale of the current antibody (ELISA) test kit used for LB diagnostics prior to the 2006 guidelines —including those used in Denmark.The Hansen COI predates the 2006 LB guidelines. However, this COI was not disclosed on the LB guidelines until 2010 and resulted from complaints, media attention and political pressure.

The nature of this COI should have resulted in Hansen’s recusal from the authoring of governmental guidelines that promote his personal financial gains. The nature of this COI should have resulted in a comprehensive review of the entire Guidelines’ content for accuracy and integrity.

The Danish 2014 clinical practice guidelines for LB appear subpar: they exclude the rich international body of peer-reviewed publications that show that Lyme Borreliosis —spirochetes similar to syphilis— is known to form biofilms and persist despite antibiotic treatment. They ignore the hundreds of peer-reviewed publications that describe serious physical conditions caused by the infection including Lyme nephritis, hepatitis, aortic aneurysms, persistent infection, Lyme Parkinsonism, dementia, and strokes.

They also downplay the risk of congenital Lyme borreliosis —portraying it as virtually impossible. The bacteria’s evasion of immune response is only superficially described without any scientific references. The latter has a large impact on the validity of serological, indirect tests.

Furthermore the guidelines obstruct patient access to clinical practice guidelines that meet internationally accepted standards. These second guidelines recognize and treat —according to patients’ response and informed consent— all forms of this complex illness, including persistent Lyme and severe complications. The Danish guidelines echo the outdated opinions found in the Infectious Diseases Society of America (IDSA) 2006 LB guidelines. The nature of the Hansen COI should have resulted in a comprehensive review of the entire guidelines content for accuracy and integrity —for example the IDSA 2006 LB guidelines do not meet the 2011 IOM standards.

According to the letter it is inhumane and unethical to obstruct access treatment options that are found in guidelines that meet internationally accepted standards. It is inhumane and unethical to obstruct access to diagnosis. These obstructions are recognized human rights abuses. This messaging regarding the tests and scientific accuracy can be considered reckless endangerment of public health. The lack of action by the health authorities indicates questionable accountability practices and create the impression of collusion and corruption.

The Human Rights Abuses of Lyme Borreliosis Patients are on Record with the United Nations 

An international all voluntary consortium of professionals concerned with the global pandemic of borreliosis diseases – including relapsing fever and Lyme borreliosis or Lyme disease – recently wrote a report, accepted by WHO in March 2017, that identified numerous life-threatening complications and severe debilitations from Lyme borreliosis infections that are generally mitigated or resolved when treated according to patient response by protocols that meet the internationally accepted standards for clinical practice guidelines set by the IOM in 2011.

The report, UPDATING ICD11 Borreliosis Diagnostic Codes (Edition One) resulted in a meeting with a United Nations Human Rights Council Special Rapporteur on June 7, 2017 in Geneva, Switzerland. This meeting focused on the violations against persons living with borreliosis infections, such as relapsing fever and Lyme disease. The report was entered into record by the Special Rapporteur —this is the first officially recognized documentation of the human rights violations experienced by this patient group.

Patients living with the non-acute form of borreliosis infections experience widespread violations of their human rights to health.  For example, unlike other patient groups, they are routinely denied ‘informed consent’, access to existing IOM-qualified treatment options and misinformed regarding the reliability of diagnostic tests.

These practices and other related practices are unethical. These violations are now on record.

Violation of Danish Sound Press Ethics

According to world renown Danish filmmaker Pernille Rose Grønkjær, “The common impression of the general public —and surprisingly of many people in the business— is that documentary is the truth. I couldn’t disagree more. Every movement in a story is somebody’s choice —the director’s, the cinematographer’s, the sound designer’s or the editor’s. A film is a subjective selection of what to tell and what to leave out. I believe in somebody’s truth —for instance, the truth of a main character. I also believe in being true, to your main characters…”

In addition to supporting human rights abuses of Lyme patients, TV2 appears to be in violation of the eight of the Danish Sound Press Ethics of the Media Liability Act.

The effects of TV2’s Cheating or Borrelia on ALS patients

There are many troubling features in this scenario that may help to explain the extraordinarily disrespectful, abusive and degrading treatment by TV2 staff of the Lyme patients in the documentary ‘Cheating or Borrelia‘. These troubling features include:

• the promotion of unreliable tests that provide personal income to LB guidelines author Hansen
• the uncertain future of TV2 jobs may have accelerated practices of bad ethics
• the inflated salaries of the editorial directors may encourage more bending of the rules
• there may be government pressure to off-load the health expenses of LB onto the vulnerable patient community

The messages in ‘Cheating or Borrelia‘ are extremely harmful to the human rights of Lyme patients and specifically to people with ALS symptoms that can be caused by undiagnosed LB. Of particular concern is the wellbeing of Tabitha Nielsen and her decline after TV2 abused her trust and the documentary discredited her character, intelligence and illness. The TV2 ‘Cheating or Borrelia‘ documentary has resulted in the loss of her financial support.

Another example of the inherent harm of these messages can be seen in the video below, in which infectious disease specialist Dr. David Martz speaks to how his misdiagnosed Motor neuron disease was undiagnosed LB, which also responded to extended antimicrobial therapies. Like Tabitha, he was also told he would die from ALS. He received this award 9 years later and he is still alive and thriving. Dr. Martz’s case was actually published in the scientific journal Acta Neurologica Scandinavica in 2006.

An opportunity to amend 

TV2 is given the opportunity to undertake the following amends. These amends should be made public in all markets where some version of ‘Cheating or Borrelia’ has been aired including, but not limited, to Denmark, Holland and Belgium.

• Ensure that Tabitha Nielsen regains her financial support
• Make a public apology for your inhumane and degrading trivializing of the LB patients’ health and defaming of their intelligence and judgment
• Make a public apology stating that you now understand the documentary has contributed to obstructing access to diagnosis and medical care for LB patients and this obstruction violates fundamental human rights as detailed in Article 12 of the International Covenant on Economic, Social and Cultural Rights’ imperative of Availability, Accessibility, Acceptability, and Quality of health care.

Accused of complicity to torture

Soon after the report was sent to TV2, disturbing news about Tabitha was reason to a firmer call upon TV2. She is now hospitalized because she finds it increasingly difficult to breathe. Tabitha is aware that if she begins using a respirator she will never leave it. Tabitha has expressed the wish to be put on a respirator, but the hospital has refused this on the grounds that Tabitha is “too ill”.

This refusal is most clearly a violation of Tabitha’s sanctity of life and human rights and is definied as torture.

References and links

I hope you found this shortened version useful. The full text and all references can be found in the original post of the letter to TV2.

If you want to know more about the connection between ALS and Lyme, you can find it in my recent article about this subject. According to a 1990 study, it is possible that at least half of the ALS patients actually have undiagnosed and untreated LB.

Embedded in it you can also watch the impressive counter-documentary ‘Something is rotten in the state of Denmark‘, which was made by the Danish patients after the original TV2 broadcast.

Huib Kraaijeveld

Author of ‘Shifting the Lyme Paradigm‘, chairman of the On Lyme Foundation and founding member of the Ad Hoc Committee for Health Equity in ICD11 Borelliose Codes

Author of ‘Shifting the Lyme Paradigm‘, chairman of the On Lyme Foundation and founding member of the Ad Hoc Committee for Health Equity in ICD11 Borelliose Codes