Petition updateSecretive and Harmful Sums Up the CDC Lyme Corps ProgramHow Does the CDC and Big Pharma Alliance Drive Public Health Policy regarding Lyme?

Jenna Luche-ThayerRoan Mountain, TN, United States

Apr 14, 2016
Greetings from Jenna,
Where do we begin?
Let me start this discussion with a number of qualifying statements. Number one, Big Pharma’s deep connections to the Centers for Disease Control and Prevention (CDC) appear to be affecting a number of public health programs beyond Lyme disease. It appears to include the CDC childhood vaccine program. Number two, I recognize that vaccines have played a critical role in protecting public health. Number three, I also understand that there may be a number of causes for autism. Number four, I know that undiagnosed Lyme can become a systemic, complicated and serious illness. Furthermore, there is no compelling proof that a delayed diagnosis of systemic Lyme can be brought under control with one month of antibiotics. Number five, I understand the public health policy is, in part, determined by cost. For example, the goal of many public health policies is to deliver the most cost-effective health interventions to the largest possible population. Number six, I understand that nothing, including treatments for disease and vaccines, comes with a 100% guarantee of safety.
However, after all this is said, a number of questions remain. The first question is this - what role does Big Pharma play in the Centers for Disease Control and Prevention (CDC) risk assessments and cost-benefit analysis regarding the delivery of childhood vaccines and treatment options for Lyme disease? The second question is - how has the enmeshed relationship between the CDC and Big Pharma contributed to the erosion of public trust regarding the safety of measles mumps rubella (MMR) childhood vaccines? The third question is - what role does Big Pharma have in the CDC’s inept and misdirected management of the Lyme epidemic? Now follows some of my observations regarding these matters.
Citizen advocacy questions the CDC:
The Lyme disease advocacy movement and the pro-safe vaccine advocacy movement are citizen-initiated movements. These citizen advocacy movements include many health practitioners and scientists. Both movements are born out of the observations of everyday people who correctly saw an increase in serious and life altering health complications that did not correlate with “unhealthy lifestyle choices”. [Ref 1]
They are made up of the parents and grandparents who witnessed their beautiful and sound children suddenly becoming neurologically impaired following vaccines, only to be diagnosed later as having autism. Their members also include the once active and healthy adults and school-age children who had downward spirals of health that included serious neurological and cardiac complications following the CDC recommended Lyme treatment.
The CDC states there is no correlation between autism and vaccines. The CDC states that Lyme disease is a simple to diagnose and simple to cure disease. However, these ‘facts’ have been questioned by concerned individuals, friends, parents and family members. Could it be that these CDC public health statements are not entirely correct?
Could it be that some of the increases in childhood autism are related to some vaccine ingredients? Could it be that the recommended timing of certain childhood vaccines increases the risk of autism for certain children?
Could it be that Lyme disease is not a simple to diagnose and simple to cure disease? Could it be that if Lyme disease is not immediately diagnosed and treated it can become a persistent infection with no ready cure… and possibly lead to disability and death?
These are simple and honest questions. Families across the nation have posed these earnest questions to the federal government. One would think, that if hundreds and then thousands of people are asking the federal government with these same questions there would be a response. Under these circumstances, one would think the federal government would make a good faith effort to determine whether or not there is a scientific basis for these inexplicable increases in poor health.
After all, citizens have long played an important role in alerting the federal government to disease outbreaks and environmental health issues. Historically, there are many successful examples of how the federal government has worked with citizens to address public health concerns.
CDC response to citizen health advocacy: The CDC response to the public concerns over both the autism epidemic and the Lyme epidemic has not been one that indicates concern or scientific integrity. In the case of public concerns over chronic Lyme and MMR-related autism, public scrutiny apparently morphed the CDC from a protector of public health and responder to disaster to that of a spin master. The CDC spin master role appears to have two basic objectives: (1) deflect public scrutiny; and (2) discredit and marginalize those who question CDC scientific integrity.
Working in concert with certain nongovernmental organizations, the CDC has used mainstream media and other media platforms to send a simple and powerful message intended to discredit the observations made by concerned citizens and any members of the medical and scientific communities aligned with these causes. The smear campaign can be summed up in two words and those words are “anti-science.”
In what country are questions regarding vaccine safety or devastating disease symptoms considered anti-science? The answer is here in the USA of 2016.
In March 2016, a documentary about vaccines that asked such questions was pulled from its debut at the Tribeca film Festival. According to the Guardian April 13, 2016 article by Benjamin Lee “The removal of the film…“showed the weight and heft of the scientific community when it comes together,” said Alison Singer, president of the Autism Science Foundation. “It’s wonderful that we are now seeing science triumph – to me that was the message of what has happened: science won.” [Ref 2]
Why would the debut of a documentary film in a local film festival be such a threat to “the weight and heft” of evidence - based science?
According to their website, the Autism Science Foundation (ASF) mission is quite broad, “support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.”
However, further review of the ASF’s mission indicates it is very much focused on promoting the following message, “Vaccines save lives; they do not cause autism.” In addition, all of their public outreach material includes this message over and over again. It appears to the casual observer that the ASF spends much of its resources on promoting the message that vaccines do not cause autism.
Furthermore, the ASF is deeply embedded key federal government decision-making bodies such as the Interagency Autism Coordinating Committee (IACC) which is the Federal advisory committee that coordinates all efforts within the Department of Health and Human Services (HHS) concerning the autism spectrum disorder. Why would the federal government have such a close alliance with an organization that applauds the removal of a documentary film and does not appear to support the freedom of speech?
Like the ASF, the Infectious Diseases Society of America (IDSA) has repeatedly and continuously decried the anti-science of the Lyme disease advocacy movement. Both the Lyme documentary “Under our Skin” and the International Lyme and Associated Diseases Society (ILADS) are particular targets of their anti-science smear. The current IDSA President contributed to the 2011 Lancet Infectious Diseases article “Antiscience and ethical concerns associated with advocacy of Lyme disease” by principal author and IDSA Vice President Paul Auwaerter. [Ref 3] This article is rife with statements and accusations that verge on libel.
Similar to the ASF, the IDSA website broadly states that it “represents physicians, scientists and other health care professionals who specialize in infectious diseases. IDSA’s purpose is to improve the health of individuals, communities, and society by promoting excellence in patient care, education, research, public health, and prevention relating to infectious diseases.”
However, the IDSA webpage pages devote a significant amount of space to Lyme disease, that simple to diagnose and cure disease…Lyme appears to have more web space than any number of infectious diseases that are considered life-threatening. In addition, all new members to the IDSA are asked to participate in a special training for Lyme disease. This IDSA Lyme training perpetuates the non-evidence-based notion that Lyme is an easy to diagnose and easy to treat disease. Furthermore, the IDSA Lyme disease training is the only disease among all the infectious diseases that is promoted via membership recruitment. Why would the IDSA devote such effort to a simple to diagnose and cure nuisance disease?
Furthermore, it should be noted that IDSA Lyme Guidelines, have been removed from the National Guidelines Clearinghouse (NGC). [Ref 4] These outdated guidelines do not meet current NGC criteria, nor do they comply with the high evidentiary standards set by the Health and Medicine Division (HMD), a division of the National Academies of Sciences, Engineering, and Medicine. In fact, the IDSA Lyme guidelines are largely drawn from ‘expert opinion’ rather than from scientific and medical evidence. In addition, the CDC continues to promote the subpar non-evidence-based IDSA Lyme guidelines.
On the other hand, the International Lyme and Associated Diseases Society recognizes that Lyme disease is a complex and serious illness of epidemic proportion and offers individualized patient-centered treatments. It should also be noted that the ILADS guidelines are posted on the federal NCG and conform to criteria based on the high evidentiary standards of the HMD (formerly the Institute of Medicine).
The subpar IDSA guidelines are keeping many thousands of Lyme patients from being diagnosed and accessing sufficient and quality treatment. Those who are able to access Lyme diagnostic testing face a 50 percent chance of inaccurate results. [Ref 5] Inaccurate false negative test results often lead to delayed diagnosis and full systemic complications. These may include serious heart, nervous system and immune impairments, dysfunction and life-altering damage. Based on CDC numbers for the US, annual Lyme infections break down to 900-1,000 new infections per day, or 40 new infections per hour.
The Motivations:
The April 13, 2016 Health Impact News article by Brian Shilhavy provides rich, documented and detailed information regarding the CDC’s role in suppressing data that links an increased risk for autism to the MMR childhood vaccine. According to the article, “This past week Representative Bill Posey entered a statement by CDC whistleblower Dr. William Thompson regarding fraud and the CDC MMR vaccine studies into the Congressional record. This should have been headline news, but it was largely ignored and not reported in the mainstream media.” [Ref 6]
What would motivate the CDC and their affiliates to disseminate such dangerous and harmful opinion-based IDSA Lyme guidelines and the medically flawed MMR vaccine studies?
Some public health experts believe that the public mistrust of any vaccine leads to the rejection of all vaccinations. And in fact, there has been a decline in childhood vaccinations that may be attributed to a distrust of vaccine safety. Therefore, such public health experts might recommend the suppression of data indicating vaccine-related health risks in order to increase vaccination rates among all children.
Some public health and infectious disease experts say that the provision of longer-term antibiotics for chronic Lyme and co-infections is a threat to our national security. Their rationale is that all antibiotic use should be conserved for “designated illnesses” as many pathogens have developed antibiotic resistance. However, this rationale does not square with many antibiotic use practices, such as the common open-ended disbursement of doxycycline for acne and joint pain.
The federal government has recognized that the public is a deeply vested stakeholder and has a decision-making role in public health policy. Furthermore, the federal government understands that the public has the right to be informed on safety issues related to public health. Surely the federal government is capable of providing the public digestible and rational messages regarding the safety concerns of certain vaccines and the use of antibiotics for chronic Lyme.
That being said, it does not require genius to understand that the Big-Pharma-profit-driven model may play a very significant role in the way public health policy is determined. Anyone following the presidential races will have heard concerns about how corporate interests hold the real power in the US government, the US economy and our political system. One of the most powerful of these corporate rulers is Big Pharma. The power of Big Pharma is not a secret, nor is it a conspiracy theory.
For example, there is been significant news coverage of how Pharma CEO Martin Shkreli, raised the cancer and AIDS drug Daraprim price from $1,700 per bottle to $75,000. [Ref 7] Shkreli was caught, however, this greedy and predatory behavior is now recognized as widespread and common to the pharmaceutical industry.
The CDC budget, less funds from mandatory sources, spent more than $4 billion in 2015 on childhood vaccines. For Big Pharma, this golden goose is an annual entitlement.
And let us not forget that Lyme is an epidemic. Despite every CDC/IDSA effort to squash the reality that Lyme can be a devastating illness, almost everyone now knows someone who is struggling with Lyme. In this regard, the escalating public concern over Lyme creates ripe market conditions for the launching of a vaccine that is supposed to protect the public. Big Pharma is poised to directly profit off the Lyme epidemic.
Big Pharma’s Lyme vaccine windfall has been delayed. Years ago, whistleblower Kathleen Dickson provided hard documentation proving how the CDC and the IDSA collaborated to misrepresent both the science and the dangers associated with the 1998 FDA approved, LYMErix™ Lyme vaccine. However, the LYMErix debacle has not stopped a number of IDSA members and former federal government health officials to be heavily invested in a variety of Lyme patents related to vaccines and diagnostics. These financial interests are not a conspiracy theory; they are well documented and on the Congressional record. The Lyme epidemic is poised to be another golden goose for Big Pharma.
While waiting for the Lyme vaccine rollout, opportunistic Big Pharma has engorged its purse by providing a variety of costly experimental drugs that treat the many debilitating symptoms of misdiagnosed, underdiagnosed and undertreated victims of the Lyme epidemic Lyme epidemic. For example, there is increasing and compelling evidence that the Lyme pathogen plays a significant role in a number of neurodegenerative conditions and diseases such as fibromyalgia and chronic fatigue syndrome. [Ref 8]
Such diseases are commonly treated with costly patented experimental medicines that do not cure but treat the symptoms. In the USA, this means the patient or the patient’s family bears much of the costs. This is a win-win situation for Big Pharma and the insurance industry.
However, the increasing public awareness regarding the wide range of Lyme symptoms have resulted in more patients seeking and confirming a Lyme diagnosis. Many patients who have been wrongly diagnosed with neurodegenerative disease are being diagnosed with Lyme disease and co-infections. A significant number of such patents have responded to the treatment options involving long-term generic antibiotics. [Ref 9] Such a protocol is in direct contradiction to the CDC/IDSA Lyme guidelines. It should be noted that there is little profit in generics for Big Pharma.
How will the US government restore public trust and control corruption from Big Pharma? Currently, advocacy groups representing the Lyme and the pro-safe vaccine communities have made demands of the representatives in both the House and the Senate. In both cases, the federal government has appeared to allow non-science based decisions dominate certain federal public health programs. These non-science-based decisions have resulted in harm, severe injury, disability, and even death for many thousands, perhaps millions of people in this country. The pro-safe vaccine and the Lyme advocacy groups are pressing for Congressional investigation of the CDC and its ties to Big Pharma as well as strict oversight of its scientific integrity.
The CDC has paid out more than $3 billion to families because of the harm due to certain childhood vaccines. The harm-generated costs related to the CDC mismanagement of the Lyme epidemic have yet to be tabulated. However, 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. The annual costs of 300,000 new cases per year can be calculated at more than $3.2 billion. [Ref 10]
With regards to Lyme, Connecticut’s Sen. Blumenthal has amassed an overwhelming amount of documentation showing conflict of interest, lack of scientific integrity, waste and possibly fraud. With regards to the MMR vaccine, Florida’s Representative Bill Posey, has been the recipient of similar documentation from a CDC whistleblower. Both Blumenthal and Posey are requesting Congressional investigations of the CDC. Will the CDC and Big Pharma be able to derail these initiatives?
We must remember Big Pharma has been part of our electoral process and it is deeply enmeshed in the economic opportunities of the professional associations that represent both the medical and the scientific community. Again, this is not a conspiracy theory. These overlapping affiliations and economic interests are well documented.
Both the pro-safe vaccine and the Lyme advocacy communities are clear threats to the interests of Big Pharma and those who benefit economically from Big Pharma. To date, the Big Pharma alliances have successfully yanked a film, suppressed the First Amendment and smeared the reputations of countless medical and scientific professionals who question them. Big Pharma alliances have marginalized sick patients and had their way with quite a few media outlets. In fact, The Lancet Infectious Diseases journal, the Boston Globe and National Public Radio have all disseminated non-science-based information regarding Lyme disease.
This is the situation in the United States of America. Are other powerful nations facing similar crises? According to an April 13, 2016 Wall Street Journal article by Laurie Burkitt “BEIJING—China will punish 357 officials implicated in the sale of improperly handled vaccines, a scandal that has reignited drug safety fears and further eroded trust in the country’s public health system.” [Ref 11]
I am very happy to see that the government of China is trying to redress its citizen’s erosion of trust in their country’s public health system. I am also waiting to see a similar headline regarding a US government response the MMR vaccine and the Lyme epidemic crises.
How will the US government put Big Pharma back in its place? How will our elected officials ensure their constituents’ health are protected against the force of uncaring profit?
Who will be responsible for the necessary oversight of the CDC? How will the CDC make amends to those citizens whose trust and health they broke?
How will we, as a nation, care for these children who have been needlessly impaired?
How will the people be served?
Thanks, Jenna
[Ref 1] Commentary - It should be noted that there are other citizen health advocacy movements dealing with the same issues that are outlined in this article.
[Ref 2] http://www.theguardian.com/film/2016/apr/13/robert-de-niro-vaxxed-vaccines-interview
[Ref 3] http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(11)70034-2/fulltext
[ Ref 4] http://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2016/02/24/lyme-disease-treatments-guidelines-ngc/80805392/
[ Ref 5 ] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2078675/
[ Ref 6] http://healthimpactnews.com/2015/will-cdc-whistleblower-on-vaccines-testify-before-congress/
[Ref 7] Breaking News at Newsmax.com http://www.newsmax.com/TheWire/martin-shkreli-office-emails-drug/2016/02/03/id/712564/#ixzz45mWIgh9B
[Ref 8] Alzheimer’s disease - a neurospirochetosis Analysis of the evidence following Koch’s and
Hill’s criteria Miklossy Journal of Neuroinflammation 2011, 8:90 http://www.jneuroinflammation.com/content/8/1/90 and
http://www.bjmp.org/content/role-chronic-bacterial-and-viral-infections-neurodegenerative-neurobehavioral-psychiatric-au
[Ref 9] https://invisibledisabilities.org/awardrecipients/2011awards/2011-research-award-david-martz-md/
[Ref 10] Economic Impact of Lyme Disease 2006 Xinzhi Zhang, Martin I. Meltzer, César A. Peña, Annette B. Hopkins, Lane Wroth, and Alan D. Fix http://wwwnc.cdc.gov/eid/article/12/4/05-0602_article three
[Ref 11] http://www.wsj.com/articles/china-to-punish-hundreds-in-vaccine-scandal-1460598215
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