Managing Editor's Note: We ran this post last June. Seems little has taken place to put true health on the radar screen. Children continue to become and remain sick in droves.
Dear Dr Volkov,
I acknowledge receipt of your e-letter of June 20 in response to my letter to Dr Collins (‘An Open Letter to National Institutes of Health's Dr Francis Collins: 54% of American Children Suffer from Chronic Health Problems, 1 in 6 has a developmental disorder’ reproduced below). I have to admit that I am less disappointed that Dr Collins has not answered in person than that you have insultingly not bothered to address any of the issues I raised in my letter, contenting yourself with a recital of NIH expenditure on autism research, some of which may be directed to looking at environmental causes.
On reflection, it strikes me that you may not be remotely competent to answer, but this does not reflect well on the NIH in any case. With the nation’s health in meltdown the refusal to address the fundamental problems that Dr Collins himself first raised to Congress 5 years ago is astonishing. Let me give a single example – nothing to do with autism - from Dr Collins’s NIH budget request for 2012 which indicates the inadequacy of the position ( HERE ) .
Dr Collins writes:
"We face a similar economic threat from diabetes. If current trends continue, by 2050 as many as one in three U.S. adults will be diagnosed with diabetes. Total costs of diabetes, including medical care, disability, and premature death, reached an estimated $174 billion in the United States in 2007...According to analysis from the UnitedHealth Center for Health Reform & Modernization, more than 50 percent of Americans could have diabetes or pre-diabetes by 2020...Furthermore, the center’s analysis predicts diabetes and pre-diabetes will account for an estimated 10 percent of total health care spending by the end of this decade, at an annual cost of almost $500 billion.
"But I can offer some hope. NIH spearheaded a landmark clinical trial on type 2 diabetes prevention that showed that people at high-risk for diabetes can dramatically reduce their risk of developing type 2 diabetes through modest exercise and dietary changes that achieve modest weight loss. Called the Diabetes Prevention Program (DPP), the clinical trial included 3,234 adults at high risk for developing type 2 diabetes, including those with a family history of diabetes, as well as other risk factors. One-third of these individuals participated in a lifestyle program that included exercise training and dietary change implemented under the guidance of lifestyle coaches. The DPP research team found that this approach lowered risk of diabetes by 58%..."
The UnitedHealth Centre report ( HERE ) projects 15m US citizens with diabetes by 2020 (>5%) and 52% with diabetes or pre-diabetes, but Dr Collins tells us we can only perhaps avert 58% of this by identifiable life-style changes, leaving some unidentified underlying cause of the phenomenon and still more than 1 in 5 Americans with pre-diabetes or diabetes by 2020, according to these figures.
In this regard it is not so unreasonable to ask not what we can do to treat these problems, but a very much more fundamental question of what is causing them in the first place. In a recent study the cost of autism in the UK was calculated at £28b a year (with an undoubted over-projection in the adult population) but leaving a net cost of £50k ($80k) a head (including issues like loss of employment and productivity). If you have just 3m Americans with autism you have an annual cost of $240b on these figures. Frankly, this is unsustainable. 5 years ago Dr Collins stated that the rise of autism was real and could not be genetic, so we have to ask why the present indifference to our concerns?
With regard to the substance of your letter, it has been pointed out to me that (disgracefully) the CHARGE project which you described in your 3rd paragraph will shut next month, funding having been withdrawn by the National Institute for Environmental Health Sciences and the Environmental Protection Agency, as will the Center for Child Environmental Health, University of California, Davis. Katie Wright has pointed out to me $13m spent on completely useless projects to do with MRI scans and face recognition (Autism Centers of Excellence). But all this money is chicken-feed beside the scope of the catastrophe facing us – and the pharmaceutical is not going to fix this.
Having said which, what I actually believe is that already there is almost enough science published to pinpoint the environmental triggers and processes of autism, it is just being arrogantly sidelined.
Please, what are you going to do? Presently, the ship is going down while the captain salutes the flag.
An Open Letter to National Institutes of Health's Dr. Francis Collins: 54% of American Children Suffer from Chronic Health Problems
Dear Dr Collins,
I am writing to you about the health catastrophe currently engulfing US children, but not only US children. Just five years ago you gave testimony to Congress as director of the Human Genome Research Institute ( HERE ):
‘But genes alone do not tell the whole story. Recent increases in chronic diseases like diabetes, childhood asthma, obesity or autism cannot be due to major shifts in the human gene pool as those changes take much more time to occur. They must be due to changes in the environment, including diet and physical activity, which may produce disease in genetically predisposed persons. Therefore, GEI [Genes and Environment Initiative] will also invest in innovative new technologies/sensors to measure environmental toxins, dietary intake and physical activity, and using new tools of genomics, proteomics, and understanding metabolism rates to determine an individual's biological response to those influences.’
The calamity that we face today is that in 5 years barely a single child has been saved from environmental harm by any government initiative, and new studies report that no less than 54% of US children suffer from the chronic diseases ( HERE ) and from the CDC itself that 1 in 6 has a developmental disability ( http://pediatrics.aappublications.org/content/early/2011/05/19/peds.2010-2989.abstract ), all of which you indicated all that time ago are due to environmental changes. These new studies come in the same week as one which shows that in an investigation of pregnant Canadian women 93% tested positive for the presence a GM insecticide Cry1Ab ( HERE ). It comes as the pharmaceutical industry and its scientists plot to further exploit vaccination mandates and their newly established prosecution immunity ever more widely ( ), with US children already expected to receive over one hundred vaccines in combination by the time they become adult ( HERE ) – and without any studies which investigate their cumulative impact on a child’s immune system ( HERE ), even if they were individually adequately tested (which they are not HERE ). I do not know when it was scientifically established that it was safe to modify a child’s immune system in this way, even before we consider all the adjuvants and excipients that are a concomitant exposure of the programme: substances which enter a child’s body through their muscles and blood stream, and not through their digestive tract. It comes with the Food and Drug Administration displaying ever greater pusillanimity over the toxic substances to which adults and children are daily exposed.
Bearing in mind that in 2006 you held a brief for gene research I cannot help thinking that your request to Congress for funding was nevertheless putting the cart before the horse. The real imperative can only be to stop the great industrial experiment on our children by reducing and eliminating toxic exposures whether through food or pharmaceuticals. Investigating which random gene combinations might indicate greater susceptibility to those toxic harms will be barely productive in the face of what is becoming a slow but inexorable genocide of children, many of whom will not outlive their parents, not have children of their own, and be further prey to the pharmaceutical industry ( HERE ), at the same time as placing an ever more impossible social, medical and financial burden on the shrinking pool of the fit and able.
In 2006 you at least spoke plain about the general causes of the chronic sickness phenomenon. The new reports are far more evasive, and years have been wasted. Immense resources and effort have been put by government agencies and industrial lobby groups into denouncing and abusing people who are simply stating the obvious: that it cannot go on any longer. It is long passed time that the public dance of lies, misinformation and evasion came to an end. I believe you know truth and it is time to speak out so that your nation and the world finally hears.
UK Editor, Age of Autism
Response from Marina Volkov, Acting Director, Office of Science Policy, Planning and Communications, National Institute of Mental Health, June 20, 2011 (Subject: Your recent email to Dr Collins)
Dear Mr. Stone:
Thank you for your May 24 e-mail to Dr. Francis Collins, Director of the National Institutes of Health (NIH). Dr. Collins’ office asked that the National Institute of Mental Health (NIMH) respond to your inquiry. We would like to address your concerns regarding the role of genetics research in addressing autism, and the interplay between NIH’s genetics research programs and environmental research programs. There has been considerable research and progress related to autism in the last several years, particularly in the last two years, thanks to funding from the American Recovery and Reinvestment Act of 2009 (ARRA). In addition, your concerns are echoed and reflected in the 2011 strategic plan of the Interagency Autism Coordinating Committee (IACC), which identifies priorities for autism research across the Federal Government and provides a basis for partnerships between Federal agencies and private organizations to further biomedical and services research efforts.
NIH is dedicated to addressing the growing public health challenge that autism spectrum disorders (ASD) present. In FY 2010, NIH invested $160 million from its annual appropriation in research on autism and another $58 million in ARRA funding. A total of $122 million in ARRA funding was devoted to ASD research from FY 2009 through FY 2010. The U.S. Department of Health and Human Services (DHHS) recently highlighted these efforts on their ARRA website (http://www.hhs.gov/recovery/programs/autismandrecovery.html). Funded projects address a broad range of topics, including diagnosis; disparities; potential risk factors, such as infection during pregnancy and the impact of immune response on fetal development; behavioral and potentially pharmacological interventions for improving social interactions; and, job skill development for transition-age youth. In addition, NIH has issued several funding opportunity announcements to encourage research designed to elucidate the causes, epidemiology, diagnosis, treatment, and optimal means of service delivery related to ASD. Thus, while NIH continues to support groundbreaking research on genetic risk factors for autism, that represents only a portion of the agency’s ongoing commitment to autism research.
The 2011 IACC Strategic Plan for ASD Research also addresses some of the concerns you mentioned in your e-mail. Chapter 3 of the Strategic Plan, titled “What Caused This to Happen and Can It Be Prevented?,” addresses research related to the possible causes of autism. This chapter contains several research objectives on environmental factors, gene-environment research, and longitudinal epidemiologic studies. Moreover, NIH continues to support a range of studies focused on environmental factors. For example, in 2003, researchers jointly funded by the National Institute of Environmental Health Sciences (NIEHS) and the U.S. Environmental Protection Agency launched CHARGE (Childhood Autism Risks from Genetics and Environment), a large case-control investigation of underlying environmental and genetic causes for autism and triggers of regression. The CHARGE study has enrolled over 1200 children to date and is addressing a wide spectrum of chemical and biologic exposures, susceptibility factors, and their interactions. Environmental risk factors under investigation include pesticides, flame retardants, chemicals in plastics, mercury and air pollutants.
Finally, NINDS continues to support an epidemiological study in a large Norwegian cohort of mothers and their infants to explore how multiple genetic, environmental, and clinical history factors might contribute to the development of autism and other neurodevelopmental disorders.
In a section of Chapter 3 focused on the new gap areas that have arisen, the 2011 Plan highlights the need for greater collaboration between genetic and environmental science investigators. That is, the IACC recognizes that studies collecting genetic information should include data on environmental exposures and vice versa; that large data sets are needed to allow mapping of detailed genetic, environment, and phenotypic information, including co-occurring medical conditions, inflammatory markers, pattern of onset, developmental course, and family history—echoing the concerns you have raised.
NIH is constantly monitoring the latest science, including developments in the areas you mentioned, and regularly updates its funding priorities to reflect new breakthroughs and research needs, to help people autism and their families.
Thank you again for sharing your thoughts and concerns.
Marina Volkov, Ph.D.
Office of Science Policy, Planning and Communications
National Institute of Mental Health
National Institutes of Health