On Monday, The Hill newspaper published a story claiming that “The CDC is being influenced by corporate and political interests,” as alleged by over a dozen senior scientists at CDC who collectively call themselves CDC SPIDER – Scientists Preserving Integrity, Diligence, and Ethics in Research. The group has chosen to remain anonymous “for fear of retribution.”
On August 29, the CDC SPIDER filed a complaint letter with CDC Chief of Staff Carmen S. Villar that makes a number of strong and unambiguous allegations that would shock most Americans, who trust the public health agency charged with “developing and applying disease prevention and control, environmental health, and health promotion and health education activities designed to improve the health of the people of the United States.” In their complaint, the SPIDER group states “It is puzzling to read about [CDC] transgressions in national media outlets like USA Today, The Huffington Post, and The Hill. It is equally puzzling that nothing has changed here at the CDC as a result. It is business as usual.”
Among the accusations from the CDC SPIDER complaint:
- A “cover up” of the CDC Well-Integrated Screening and Evaluation for Women Across the Nation (WISEWOMAN) that, as The Hill describes, resulted from “a coordinated effort within the CDC to misrepresent data given to Congress so that it appeared the program was involving more women than it actually was.”
- “Irregular (if not questionable) relationships” between top CDC officials and Coca-Cola that was reported in a HuffPost blog by Carey Gillam in June and which resulted in the “immediate departure” of Barbara Bowman, former director of CDC’s Division for Heart Disease and Stroke Prevention.
The SPIDER group complains that as CDC scientists, the integrity of their work has been compromised, data “cooked” to make the agency’s outcomes look better than they are, and that “this ‘climate of disregard’ puts many of us in difficult positions. We are often directed to do things we know aren’t right…why has the CDC OD turned a blind eye to these things. The lack of respect for science and scientists that support CDC’s legacy is astonishing.”
Beyond WISEWOMAN and the revelations of collusion with the Coca-Cola corporation, the CDC does indeed have a legacy of some astonishing, but generally dismissed, practices. My rude awakening to this was in 2014 an alarming wake-up call, as I was harassed by a persistent representative of the CDC and Census Bureau who continued to call and to visit my home, insisting that I provide intimate details about my personal health for an extensive and invasive study called the National Health Interview Survey. The survey is voluntary and individuals have the right to decline participation, as detailed in a letter provided by the field worker, and in the interest of preserving the privacy of my personal health information (which I’ve always been cautioned not to volunteer and which I believed is protected by HIPAA) and because I had been warned by a friend who had been recruited for the survey that “they are stalkers” (which I found impossible to believe at the time). When we spoke by phone, the CDC/Census field worker told me in response to my declination to participate that “no does not mean no to them” (clarifying that by “them,” he meant “the government”), “they won’t take no for an answer,” “someone else will come knocking on your door,” and most astonishingly, “they know everything about everybody…that’s why the NSA has been tapping everybody’s phone calls.” I frankly could not make any sense of the conversation and after it transpired wondered whether it had been some sort of paranoid fantasy.
Until this conversation with a CDC representative, I had never questioned the agency’s vested interest in supporting public health and wellness, and in my mind that extended to individuals’ well being. I was left shaking, feeling like I had just fallen into George Orwell’s novel Nineteen Eighty-Four. (Really–I was extraordinarily unsettled for months, and my therapist of five years was irate, concerned that the event had set me back years in my treatment for depression and anxiety.)
This experience prompted research into the CDC, which reminded me that the Center’s predecessor, the U.S. Public Health Service, was responsible for initiating and sustaining the infamous syphilis study at Tuskegee, in which the organization conscripted medical doctors who collectively agreed not to treat syphilis among infected black men in order to study the pathological progression of the disease from 1932 until 1972. The result was fully preventable deaths and extraordinary and inhumane suffering of hundreds of human beings – with the indifferent administration of both the federal government’s Public Health Service and the doctors who participated in the study. To this day, the CDC website offers a timeline of the study that asks “What went wrong?” Under that heading, which one might expect the organization to admit that the study was wrong, unethical from the beginning. Not so: the CDC states that what went wrong was that “an Associated Press story about the Tuskegee Study caused public outcry.” In other words, it makes no admission of unethical behavior–the closest it comes is to point out that “The advisory panel concluded that the Tuskegee Study was ‘ethically unjustified’–the knowledge gained was sparse when compared with the risks the study posed for its subjects.” This semi-admission of culpability follows the excuse that “the men had agreed freely to be examined and treated.” (The men were not treated for syphilis although all treating doctors were aware that the patients had been infected with it.)
The CDC Legacy in Action: Lyme Disease
CDC SPIDER scientists have expressed concern for the “astonishing” practices of the organization. It is telling that this group of federally employed scientists has chosen to express this concern anonymously “for fear of retribution” despite statutes that supposedly protect federal employees from whistleblower retaliation. This begs a serious investigation into whether the Whistleblower Protection Act has any real, enforceable, practical value, or if it is a ruse.
While we would all prefer, and almost all of us have been conditioned, to think that unethical Tuskegee-like actions occur only in history and never in the present, there is presently abundant public outcry about the CDC’s handling of at least two infectious diseases: Lyme and the Zika virus.
More people suddenly are becoming familiar with the prevalence and severity of Lyme disease. In 2013, the CDC revised its annual estimate of infection rates from 29,000 to over 329,000 new cases annually. This gave some who live with Lyme disease and the doctors who treat them hope that the acceptance of high prevalence would lead to greater research and care. This has not happened. In fact, the federal government of Canada, which has followed CDC diagnostic and treatment guidelines for Lyme disease to date, is presently convening meetings of its own scientists to develop better treatment protocols for the disease in recognition that the American government–e.g., the CDC–has been negligent in its acknowledgement of science related to Lyme disease.
In 2014, the Canadian House of Commons passed a law called the Federal Framework for Lyme Disease whose preamble states, stunningly, that “the current guidelines in Canada are based on those in the United States and are so restrictive as to severely limit the diagnosis of acute Lyme disease and deny the existence of continuing infection, thus abandoning sick people with a treatable illness.”
Given that the bacterium that causes Lyme disease, Borrelia burgdorferi, is closely related to that which causes syphilis, this statement is eerily foreboding when reflecting on the Tuskegee syphilis experiment. All “normal” people have been conditioned to believe that both public health organizations and individual medical doctors are committed to the well being of patients; our history says otherwise, CDC scientists themselves have said otherwise, and this language from the Canadian government clearly states that the U.S. government has “abandoned sick people with a treatable illness.”
This corruption is finally getting some media attention. In June, New York City-based news station FOX5NY broadcast “Lyme and Reason,” a special dedicated to the Lyme disease epidemic–motivated by the high prevalence of Lyme disease among the news team’s families and friends. Earlier in the year, the CDC had refused to participate in an on-camera interview with a Salisbury, Maryland-based ABC News affiliate for Lyme disease awareness month, and so it was encouraging that CDC Chief of Epidemiology and Surveillance Activity of the Bacterial Diseases Branch Paul Meade agreed to be interviewed for the FOX5NY special. If Meade’s participation in the interview appeared to have been a baby step toward the CDC acknowledging the severity of Lyme, this was largely undermined by what Meade said during the interview. Following the broadcast, another expert interviewed for the special, Steven Phillips, challenged many of Meade’s claims, and FOX5NY asked Meade to respond to Phillips’s rebuttals. The response to date has been silence.
Patient Centered Care Advocacy Group founder Bruce Fries created a petition in August asking the CDC to discontinue preferential treatment of the Infectious Diseases Society of America, stating that “despite the fact that the IDSA guidelines are not compliant with current standards and are based on outdated science that has been discredited by a growing body of research, the CDC continues to endorse and promote them while withholding information about competing guidelines from ILADS, which contain information on evidence-based treatments that could improve the health of thousands of chronically ill patients throughout the world.” The IDSA’s Lyme disease guidelines were the subject of a 2008 antitrust lawsuit by Connecticut Attorney General Richard Blumenthal, which found “serious flaws” and a litany of conflicts of interest. The guidelines were removed this year from the National Guidelines Clearinghouse for being outdated and noncompliant with federal standards and are currently undergoing review.
The CDC Legacy in Action: Zika Virus
Meanwhile, the reason the CDC gave for not being able to participate in the WMDT 47 ABC news interview in May is that “many of our staff are working on the Zika response.” Since May, the Zika virus has been touted as a serious public health risk by the CDC and perhaps in even greater measure by mainstream news organizations. The Zika panic can be fairly compared to that which ensued following warnings of swine flu, avian flu, West Nile virus, SARS and many other infectious diseases. To date, 3,936 cases of Zika have been reported among American people, 128 of which have been contracted within the United States. (By comparison, over 300,000 new cases of Lyme diseases are estimated to occur within the United States annually, or over 3 million over the past decade.)
This is not to suggest that raising awareness about the Zika virus is unwarranted; however, the attention and resources allocated to Zika virus prevention are surprising given its limited prevalence: In February, President Obama requested $1.9 billion in emergency funding for Zika-related public health efforts, and U.S. Congress has struggled over the request, with the House proposing $1.1 billion. Only $24 million on average is dedicated by the National Institutes of Health annually to research Lyme disease despite its unquestionably much higher prevalence and known severity.
Purportedly in order to stem the spread of the Zika virus, federal agencies have authorized the aerial spraying of Naled, a potent pesticide, over areas that are determined to be high-risk areas for Zika. While the CDC and EPA claim that Naled poses little to no risk to human beings, the chemical is listed as acutely “moderately to highly toxic by ingestion, inhalation and dermal adsorption” with chronic exposure causing “impaired memory and concentration, disorientation, severe depressions, irritability, confusion, headache, speech difficulties, delayed reaction times, nightmares, sleepwalking and drowsiness or insomnia. An influenza-like condition with headache, nausea, weakness, loss of appetite, and malaise has also been reported,” according to Extension Toxicology Network, a collaboration of Cornell University, Michigan State University, Oregon State University, and University of California at Davis. Remarkably, the effects of Naled can be strikingly similar to those of Zika virus infection itself–including potentially causing serious birth defects among children born to pregnant women who are exposed to the chemical.
Despite assertions that Naled is poses no risk to human beings or the environment, it was widely reported in September that millions of bees were killed by Naled spraying in South Carolina, supposedly in an effort to control Zika.
Juan Declet-Barreto, Kendall Science Fellow on Environmental Justice and Climate Policy at the Union of Concerned Scientists, told me in an email that “The EPA and CDC haven’t been transparent about their plans to spray and this has been a big problem, at least in Puerto Rico, where there is a long history of public distrust of the federal government.” He went on:
This distrust is warranted. We know that the federal government tested toxic defoliation chemicals like Agent Orange in Puerto Rico in the 1950s and 60s as per their own records. When it was reported a few months that Naled would be sprayed, there was a public uproar. The CDC tried to reassure people by issuing a fact sheet, which said Naled is safe to spray “under certain conditions,” but it’s not clear that those conditions were actually met. As has been reported, the mosquito that carries Zika (Aedes aegypti) is an indoor mosquito and EPA has said that Naled must be sprayed aerially and is not for indoor use. Mosquito expert Duane Gubler, who led the 1987 CDC Naled-spraying campaign in Puerto Rico to fight the ongoing dengue epidemic there, has been quoted clarifying the conditions under which Naled would be effective in combating an indoor mosquito, which diverge from CDC’s claims. In addition, the CDC instructed people to stay indoors when spraying occurred, but never notified communities when their neighborhoods would be sprayed.
“The way this unfolded,” Declet-Barreto wrote, “shows that the federal government has a long way to go when it comes to transparency and rebuilding trust with certain communities.”
The CDC Legacy in Action: Unrestrained Corruption?
Indeed, his words echo the statements of CDC scientists themselves who represent themselves as CDC SPIDER, and are reflected by the CDC’s confounding history that oftentimes has made inexplicable and sometimes unethical decisions that appear to be motivated by political interests and financial conflicts of interest, and which undermine the CDC’s own mission to protect public health.
CDC scientists, independent scientists, the governments of Canada and Puerto Rico, news organizations and Lyme disease patients, specialists and advocacy groups have petitioned the CDC to improve its transparency and to reform its practices, and also have petitioned U.S. Congress to investigate the CDC for conflicts of interest–so far to no avail.