The State of Pediatric Health — 2019
Institute for Pediatric Health
54%. In 2007, a study by Thakrer et. al. (2) (published in 2011) showed that 54% of the United States pediatric population had one or more chronic illnesses, including, neurodevelopmental, autoimmune, cancer, tourettes and more. (1) In 2019, that number is possibly even higher. If that number is surprising to you, than you are not alone. Generation Alpha (children born between 2011–2025), or maybe more aptly named Generation Chronic, is predicted to be the first generation to live shorter lives than their parents, and sicker lives at that. (19) In earlier eras, infections were a major cause of childhood disease and mortality and over the decades, our medical and public health system has done amazing work to reduce the impact of infections. However, with the drastic reduction in disease and death from infections has come a significant rise in childhood chronic illness. In a medical system that financially rewards sickness rather than health, it’s no surprise that our children continue to get sicker as a society. If “a nation is only as healthy as its children,” (Harry Truman — 1946) then our nation is in trouble. It’s time we find out why.
The decline of infant/child health in the United States relative to the other wealthy industrialized nations (OECD19) began to change for the worst in the late 1970’s and 80’s. While the overall childhood mortality (children ages 0–19) declined annually across the world, the decline in the United States has dropped at a slower rate than the other 19 countries. In the 1980’s, only 12.8% of US children had a chronic illness. More recently, the closest decade for which data was available (2001–2010), “The US childhood mortality rate was 75% higher for infants and 50 percent higher for children ages 1–19 than the average rate across all twenty countries (Exhibit 3)”. (2) Put another way, US infants were 75% more likely to die before their first birthday compared to the other 19 countries in the study, the OECD19.
According to Thakrer et. al. (2), during the period 2001 to 2010, “for infants, the two leading causes of death in the US were extreme immaturity [premature birth] and sudden infant death syndrome (SIDS).” More recently, there has been some evidence that SIDS deaths have decreased in the United States. However, in a 2006 paper by the CDC, it was argued that the decrease in SIDS related deaths could be “explained by a shift in how these deaths are classified or reported.” (5) Once again, the US was the worst of all the countries examined. But research identifying causal or associative factors for this dramatic difference has been largely underfunded and restricted.
Pediatric health is the byproduct of 4 quadrants — Clinical, genetic, behavioral and environmental. To what extent each of these quadrants directly, indirectly or together impact a child’s health is largely unanswered. While there is extensive clinical and genetic data on individual pediatric patients, little has been done to try and merge these isolated data sources to identify associative patterns of disease, let alone syncing this information with environmental and behavioral factors that are as yet incomplete and isolated. The relationships between and the data within these quadrants needs to be investigated in more depth, both to inform population level public health decisions, and as a guide for individual families and children to prevent and improve their health outcomes through advanced and dynamic knowledge and information.
Developmental disabilities have also been steadily rising globally, with the most dramatic increases occurring once again in the United States. (2) And while these children are not dying young (aside from comparitive increases in suicide rates etc. for the developmentally disabled), they are completely shifting our understanding of family emotionally, medically, economically and socially. Whether we refer to Autism Spectrum Disorder, Attention deficit/hyperactivity disorder, Tourettes, learning disabilities, etc. their rise over the last 3 decades is startling. The rise has been so startling for developmental disabilities, especially autism disorders, that we have seen a rise a pediatric medical specialists to serve these highly specific medical cases. Why are boys diagnosed with Autism related disorders 4 times more often? Why are boys diagnosed with ADHD 5 times more often than girls? Why are we not obtaining reams of data from these medical practices and analyzing trends and associations that led to their patients conditions?
With developmental disabilities affecting at least one out of every six children, it comes as no surprise that the need for special education services has risen in public schools over the last few decades. From the 1980’s to the early 2000’s, there has been a marked increase of 63% of students who have received special education services under the Individuals with Disabilities Education Act. (20) There is no doubt that these numbers have continued to rise with no end in site, with a likely rise in special education services to accompany. Interestingly, IDEA services are only quantified and provided for public schools. There are numerous private school children that remain uncounted by special education public services. And many of these schools specifically service and design their curriculum around special needs children. It is highly likely that private school children have an even higher rate of developmental disabilities among other chronic illnesses. It is imperative that we as a society identify the links to this dramatic increase on behalf of the children, but also in consideration of the future economic impact that such a rise in disability services will cost the schools and the country as a whole.
Pediatric autoimmune conditions such as Juvenile Arthritis, Type I Diabetes, Celiac, Lupus, Crohns, etc. have also shown a precipitous rise without explanation. Diabetes Type I in children younger than 19 has seen a 21% increase from 2001 to 2009. All the while, the incidence in adults has either stayed the same or dropped. A surprising result for the authors, such that they wrote “the increase in incidence rates in youth, but not adults, suggests that the precipitating factors of youth-onset disease may differ from those of adult-onset disease.” (21)
Some work has been started analyzing patient clinical records in an attempt to train machine learning algorithms to identify and predict health trends in adult populations such as the MIMIC compendium of intensive care unit data from Beth Deconess hospital in Boston that has led to approximately 500 papers thus far. (7) So while the patient population is significantly different, a model clearly exists for how patient records can inform and improve health in the medical community.
Could this dramatic change in infant and childhood health be genetic or epigenetic in nature? Absolutely. While the recent increase in disease evolutionarily cannot be solely attributed to genetic factors, there are certain genetic/epigenetic profiles that seem to be more at risk of developing certain diseases. For example, “Studies have found that autism spectrum disorder (ASD) aggregates in families, and twin studies estimate the proportion of the phenotype variance due to genetic factors (heritability) to be about 90 percent.” (8) A separate study found that “ASD heritability was estimated to be 0.50, and shared familial environmental influences to be 0.04.” (8) In addition, a recent study from Sweden which reanalyzed a group of children from 1982 through 2006 including twins, siblings, and half-siblings found that “the incidence of ‘inherited’ autism was about 83 percent, whereas the non-shared environmental influence was estimated at 17 percent.” (9) And yet, for a condition so complex as ASD for which “changes in over 1,000 genes have been reported to be associated….most of the gene variations have only a small effect, and variations in many genes can combine with environmental risk factors, such as parental age, birth complications, and others that have not been identified, to determine an individual’s risk of developing this complex condition.” (6) It is the interplay between new or increasing environmental triggers and various genetic risk factors that seem to be more profound than we realize. Currently, the major personal genome companies like 23 and me do not do whole genome scans or analyses and do not connect the single nucleotide polymorphism (snp) genetic information they do have with any other quadrants like patient specific clinical and environmental data. We believe there are many answers hidden within such a cross-quadrant analysis and we intend to determine these answers.
There are numerous possible culprits that must be investigated extensively, especially those whose appearance or environmental increase coincided with the rise in childhood disease. From food additives, flame retardants, herbicides, pesticides, phthalates, air pollution, BPA, oxybenzone, fluoride, etc. — all may all be responsible individually or in some collective for our childhood health issues. Unlike many other countries globally, especially the OECD19, the United States adopted legislation long ago that allowed products and chemicals to be introduced to the market under assumed health, and not extensively researched ahead of its release. The other countries of the OCED19 certify products and chemicals and safe prior to their release, and the research process is extensive.
There are a number of great organizations and groups working on addressing the health impact of these environmental toxins, such as the Collaborative on Health and the Environment (CHE, 18). But it seems the public and governmental organizations have yet to be convinced of the impact from the many studies recently published connecting environmental exposures to increases in adolescent cancers like Acute Lymphoblastic Leukemia. Considering the fact that per pound, children eat over three times more food than adults, their environmental toxin exposure is likely drastically more severe. In a highly publicized 1993 report from the National Research Council entitled, “Pesticides and the Diets of Infants and Children,” it was estimated that 50 percent of lifetime pesticide exposure occurs during the first five years of life. (15) And today, it should come as no surprise that pesticide use has skyrocketed when compared to 1993 levels, drawing continued associations with the increased rise in leukemias, brain tumors and neurodevelopmental disorders among others. (17) Considering that pesticides have shown endocrine disruption potential and immune system dysregulation among other issues, there is a still a significant amount of work to be done to investigate exactly how far reaching and problematic these environmental exposures are. Much of the work to date has focused on “the ability of a chemical to act as carcinogen
[which] was originally thought to hinge on its capacity as mutagen.” (16) “It is likely that many other more biologically-relevant activities are important in leukemogenesis as well. Other chemicals may impact the immune system indirectly, setting up the individual for aberrant responses to infection. The role of exogenous factors such as chemicals, many of which are immunosuppressive, in this process is unknown and likely to be a major research field in the future. (16) We must delve deeper into the data to identify the outstanding cross-quadrant associations playing a major role in the development of these diseases/disorders. It is not enough to know that there is a “disproportionate burden of childhood leukemia in the Latino population of California.” (16) Rather we must preventatively learn who is most at risk down to the individual child level to better provide early familial health advice, governmental policy change, and improve long term pediatric health outcomes.
We must also consider the impact of these potential environmental triggers on the short term and long term alteration of the childhood microbiome that research has recently shown is abnormal in certain disease states like autism. Are these environmental exposures to various chemicals impacting the microbial diversity and health or vice versa? This is as yet unclear. Could maternal exposure to antibiotics before or during pregnancy have a causal connection to an increased incidence of childhood disease? What about during birth as is commonly prescribed during long labors and as a component of medical interventions? While still a young field in the study of disease, there are bright people looking for answers. these answers are so important to our children that we must push harder and faster for these answers.
In 2004, the Institute of Medicine and the National Research Council, both a who’s who of the top physicians and researchers in the United States, published a seminal paper entitled, Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health which aimed to assess US pediatric health and identify medical, political and social ways to improve it. (3) They write, “…there are growing numbers of children in the United States with serious chronic diseases, including many emerging disorders that reflect the interaction of genetics, behavior, and the environment. Childhood obesity, diabetes, and asthma rates are among the highest in the world and are increasing rapidly. Intentional and unintentional injuries, mental health disorders, and attention deficit disorder are highly prevalent. Moreover, many of these conditions are not equally distributed across the population; some groups experience substantially higher rates than others. Finally, the long-term consequences of these disorders are significant, because unhealthy children often become unhealthy adults. Health during childhood must be a major concern both because children are important in their own right and because the nation cannot thrive if it has large numbers of unhealthy adults.” One of the important aspects of this 2004 paper was a series of recommendations the collective made to try and improve the short and long term health outcomes of US children. Interestingly, very few of these recommendations have been enacted to any extent. For example, recommendation 2 states: “The secretary of the U.S. Department of Health and Human Services (HHS) should designate a specific HHS unit with a focus on children to address development, coordination, standardization, and validation of data across the multiple HHS data collection agencies, to support state-level use of data, and to facilitate coordination across federal departments. The designated agency’s long-term mission should be to:
- monitor each of the domains of children’s health (i.e., health conditions, functioning, and health potential) and its influences over time;
- develop the means to track children’s health and identify patterns (e.g., trajectories) in it over time, both for individual children and for populations and subpopulations of children; and
- understand the interaction and relative effects of multiple influences on children’s health over time.”
And yet, 15 years later, there is still no designated government agency. In fact nationally there still remains, 8 or more different government organizations responsible for monitoring, managing and publicizing pediatric health recommendations and subsequent health outcomes. Granted, organizing such a centralized agency to oversee and fulfill the recommendations discussed in the paper is a daunting task amidst the bureaucracy and red tape of the government. The final recommendations of the Children’s Health paper are the most important and impactful: “the U.S. Department of Health and Human Services and the Environmental Protection Agency should prioritize research and training on emerging methods for characterizing children’s health and understanding influences on it, including research on:
- creation of improved measures of functioning and health potential;
- the relative importance of and interactions among the range of influences;
- biopsychosocial pathways of development;
- assessment of children’s exposures to environmental toxins and other environmental health hazards;
- reasons and remedies for health disparities;
- longitudinal methods that can identify causal relationships between developmental and functional levels and the health status of children;
- development of profiles and integrative measures of children’s health; and
- construction of trajectories for each domain of children’s health.”
The age of smart-phone addiction, screen time monitoring and social media has arrived. It is becoming increasingly clear that these technological advances, while a boon economically for the IT sector and the country, are having a devastating effect on the mental health of our youth. And while social media’s association with childhood depression is the low hanging fruit and has been studied, there is likely more to the drastic increase in childhood depression, considering that even prior to this current social media age, the rates of anxiety and depression were already significantly increasing in children — 5.4% in 2003 growing to 8% in 2007. Today, we are approaching a seemingly unimaginable level where the rates of depression in 14–17 year olds has increased 60% since 2009, which equates to more than 1 in 20 kids with depression or anxiety, and 9.4% of children with ADHD. There are 7.7 million children nationally (16.5%) with 1 or more mental health disorders with levels varying widely by region and state; 27% of children in Maine have at least one mental health disorder. (11, 12, 13, 14) If these numbers are striking they should be. We cannot merely attribute 1 factor like the rise of social media as the cause. We must investigate and identify the myriad of causes and influences likely driving this rise in pediatric mental health issues so that we may better inform, treat and prevent these debilitating conditions in our kids.
The current scope of pediatric health research is not adequate and the data backs this up. As a nation we must be better at collecting, managing, researching and disseminating pediatric health data trends and information. The Children’s Health paper recommendations continued, #5: “Federal agencies and departments, particularly the Environmental Protection Agency and the U.S. Department of Health and Human Services, should promote the systematic collection, dissemination, and linkage of data on children’s exposure to toxins, air pollution, and other environmental conditions, as well as data on policies likely to affect children’s health. The Census Bureau should continue to collect and distribute local-area data and facilitate efforts to match these data to existing sources of information on children’s health and its influences.” And recommendation #6: “Government and private agencies and academic organizations that conduct health-related surveys or compile administrative data should geocode addresses (i.e., provide geographic identifiers) in ways that facilitate linkages to census-based and other neighborhood, community, city, and state data on environmental conditions. With adequate protections to ensure the confidentiality and security of individual data, they should also make geocoded data as accessible as possible to the research and planning communities.” It’s time this gets done.
This is why the nonprofit organization, Institute for Pediatric Health was started. Our children and their families need answers. It is clear that our children are being exposed to a toxic load beyond any ever experienced in history or even that currently seen by other current OECD19 countries. With such a drastic and differential rise in serious chronic diseases, we must identify how the interaction of genetics, behavior, and the environment impacts our children clinically. The Institute for Pediatric Health (IPH) is a collection of health, medical and research professionals who are investigating these factors and their interactions to properly identify any and all early childhood triggers.
- Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health (2004) https://www.ncbi.nlm.nih.gov/books/NBK92197/