Building New York State Centers of Excellence in Children’s Environmental Health: A Replicable Model in a Time of Uncertainty

Abstract

Public health programs may be seriously affected in periods of federal retrenchment. During these times, state-based strategies provide an alternate pathway for advancing public health.

A 12-year campaign to secure state support for a network of Centers of Excellence in Children’s Environmental Health (CEH) promoting health of children across New York State is described. It was driven by rising rates of asthma, birth defects, developmental disorders, and other noncommunicable diseases in children; growing evidence associating hazardous environmental exposures with these conditions; and recognition that federal resources in CEH are insufficient.

Critical campaign elements were (1) formation of a statewide coalition of academic health centers, health care providers, public health officials, community advocates, and other stakeholders; (2) bipartisan collaborations with legislative champions and government leaders; (3) assessment of the burden of developmental disorders and noncommunicable diseases associated with environmental exposures among children; (4) maps documenting the presence of environmental hazards in every county statewide; (5) iterative charting of a changing political landscape; and (6) persistence. The 2017 award of a 5-year, $10 million contract to establish Centers of Excellence in CEH demonstrates the value of this statewide strategy.

In times of federal retrenchment when agencies of the national government choose not to take action to promote public health, protect the environment, or increase access to health care, states have acted to secure these goals. Examples of recent, state-led public health initiatives include the following: Massachusetts led the nation in adopting universal health insurance¹; Vermont attempted the introduction of a single-payer health care system²; New York developed a unique statewide network of occupational safety and health centers³; Texas established a Cancer Prevention and Research Institute⁴; California demands stricter motor vehicle emission standards than the federal government⁵; and Ohio and 30 other states have expanded access to Medicaid.⁶

This article describes a 12-year campaign to secure state support for a network of Centers of Excellence in Children’s Environmental Health (CEH) that now spans New York State. It summarizes key lessons learned in this effort that may inform other public health campaigns at the state and local levels.

HISTORY OF CEH

CEH is the branch of pediatrics and public health that studies environmental influences on children’s health, development, and disease risk.⁷ Its core concept is that children are qualitatively and quantitatively different from adults in their patterns of exposure and in their vulnerabilities to environmental hazards. CEH has grown in importance over the past three decades and become a significant component of pediatric practice.

A seminal event that accelerated the rise of CEH was the publication in 1993 of a National Academy of Sciences report, Pesticides in the Diets of Infants and Children.⁸ This report increased awareness of children’s vulnerability to environmental hazards among national policymakers, and it documented four key factors that contribute to children’s heightened susceptibility:

1. Children have proportionately greater exposures to toxic chemicals and other environmental hazards than adults.

2. Children are not well able to detoxify and excrete many toxic chemicals.

3. Children have fast-moving developmental processes that can be permanently damaged by even very low-dose exposures.

4. Children have many years of future life to develop diseases of long latency that may be triggered by early-life exposures.

Rising rates of developmental disorders (DDs) and other noncommunicable diseases (NCDs) in American children have further contributed to growth of interest and investment in CEH. These rising rates include increases in the incidence and prevalence of pediatric asthma,⁹ birth defects,¹⁰ dyslexia,¹¹ mental retardation,¹¹ attention-deficit/hyperactivity disorder,¹¹ autism,¹¹ childhood leukemia,¹² brain cancer,¹² preterm births,¹³ and obesity.¹⁴ Research conducted in Children’s Environmental Health and Disease Prevention Research Centers, supported since 1997 by the National Institute of Environmental Health Sciences and the US Environmental Protection Agency, has identified numerous associations between NCDs and hazardous environmental exposures^15–20 (Table 1).

TABLE 1—

Increasing Rates of Developmental Disorders and Noncommunicable Diseases in US Children and Relevant Environmental Hazards from 1970–2018

Health Factor	Trend	Relevant Environmental Hazard
Early developmental disorders
Preterm births	Increased in incidence by 27% since 198113	Particulate air pollution15
Birth defects	Now the leading cause of infant death10 Some (e.g., hypospadias) have doubled in frequency	Folic acid deficiency Ethyl alcohol Medications: thalidomide, DES, valproic acid
Neurodevelopmental disorders (e.g., dyslexia, mental retardation, ADHD) and autism)	Affect 10%–15% of babies born each year in the United States, and rates are rising11	Particulate air pollution15 Lead16 Methyl mercury17 PCBs18 Chlorpyrifos19 Numerous industrial chemicals20
Childhood noncommunicable diseases
Pediatric asthma	Tripled in frequency since 19809 Rates have risen especially rapidly among poor minority children in inner-city communities9	Particulate air pollution15 Secondhand cigarette smoke Cockroach droppings Mold and mildew
Childhood leukemia and brain cancer	Incidence rates have increased by 40% since the early 1970s despite declining mortality12; now the second leading cause of death in American children12	Benzene 1,3-butadiene Prenatal pesticide exposure Ionizing radiation
Childhood obesity	Obesity has trebled in prevalence since 1980, and its consequence, type 2 diabetes, is increasingly common and is diagnosed at ever younger ages14	Characteristics of the urban built environment—lack of safe play spaces, lack of sidewalks and bicycle paths, and lack of wholesome food—influence diet and change activity patterns14

Note. ADHD = attention-deficit/hyperactivity disorder; DES = diethylstilbestrol; PCBs = polychlorinated biphenyls.

PEHSUs

To complement research investment in CEH, in 1998 the Agency for Toxic Substances and Disease Registry established a national network of Pediatric Environmental Health Specialty Units (PEHSUs).²¹ The goal of PEHSUs is to provide clinical, preventive, and educational services in CEH. A PEHSU is located today in each of the 10 US federal regions.

Each PEHSU is staffed by a multidisciplinary team of pediatricians, nurses, social workers, industrial hygienists or environmental specialists, and health educators. PEHSUs evaluate, diagnose, and guide the management of children exposed to environmental hazards; provide consultations for front-line providers; provide services to families, including home visits; educate school boards and elected officials; respond to natural disasters; and serve as a platform for training future CEH leaders.²¹ The Agency for Toxic Substances and Disease Registry currently provides about $150 000 to each PEHSU annually, a level of support that has changed only minimally since 1998. Despite its great strengths, the PEHSU network has two structural shortcomings. First, the PEHSUs are underresourced, and federal support is unlikely to increase in the near future; second, they are too few in number and spread too thin geographically to meet current and anticipated future need.

CREATING A STATE-BASED PROGRAM

The Region 2 PEHSU is responsible for providing clinical, preventive, and educational services in CEH to the 6.9 million children living in New York, New Jersey, Puerto Rico, and the US Virgin Islands and is based at the Mount Sinai Medical Center in New York City. To supplement the Region 2 PEHSU and make sustainable CEH services available to children in every county across New York State, we formed a coalition in 2004. We forged partnerships with political leaders of both parties, leaders of state agencies, advocacy groups, and ultimately with the governor of New York. The following sections describe this 12-year campaign.

Coalition Building

Our first step was to form a broad coalition that included pediatricians, family physicians, nurses, public health officials, public health educators, environmental advocates, and academic health centers from across the state. Many of us had worked together previously in other programs such as lead poisoning prevention programs and the National Children’s Study. Professional and community-based advocacy organizations became key members of the coalition and included the American Academy of Pediatrics, the Huntington Breast Cancer Action Coalition, the New York State Breast Cancer Support and Education Network, the Learning Disabilities Association of New York State, Environmental Advocates of New York, and Clean and Healthy New York.

The coalition determined early on that formation of a statewide network of Centers of Excellence focused on the provision of enhanced clinical, preventive, and educational services in CEH (i.e., CEH centers) would be a cost-effective and politically feasible way to achieve the coalition’s goal. The coalition envisioned a network of CEH centers whose architecture would be modeled on the PEHSU network and also on a statewide network of occupational safety and health centers formed in New York in 1988 to meet the need for clinical and preventive services in occupational health.³ It was envisioned that the CEH centers would be colocated in many of the same institutions as the occupational safety and health centers and that they would, to the extent possible, share resources.

The coalition’s structure was informal, and leadership was shared. The coalition had no budget, and coalition members or their institutions supported meeting travel, production of educational materials, and other expenses. Staffing was provided by the Albany-based professional legislative staffs of the Learning Disabilities Association of New York, Clean and Healthy New York, and Environmental Advocates of New York.

The coalition met approximately twice each year. Many meetings were held in conjunction with an annual legislative day at the state capitol in Albany when coalition members would meet with legislators and their staffs to present the case for funding the CEH centers. Coalition members also met throughout the year with elected officials in their home offices in their legislative districts. These local meetings were extremely valuable because they were much less hurried than meetings in the capitol, permitted more detailed conversation, and were often attended by legislators themselves rather than by staff members.

Legislative Champions

Partnerships forged with champions from both parties in both houses of the New York State Legislature, the assembly and the senate, were critical to building and sustaining momentum. Thus one of the coalition’s earliest planning meetings was convened by Thomas DiNapoli, then chair of the Assembly’s Committee on Environmental Conservation. Other legislative leaders with whom the coalition worked included Assemblyman Robert Sweeney and Assemblyman Steve Englebright, successive chairs of the Assembly Committee on Environmental Conservation; Assemblyman Richard Gottfried, chair of the Assembly Committee on Health; and Senator Kemp Hannon, chair of the Senate Committee on Health.

Needs Assessment

A formal assessment of the need for a statewide network of CEH centers provided a key underpinning to the campaign. This assessment was undertaken by a team in the Icahn School of Medicine at Mount Sinai. It led to publication of an 84-page report, New York State’s Children and the Environment,²² that examined the burden of DDs and NCDs among infants and children in New York and reviewed the links between these conditions and hazardous environmental exposures. The report presented data on incidence and prevalence of each of the major childhood diseases that have been associated with hazardous environmental exposures as well as data on the major environmental hazards confronting New York’s children (i.e., lead, air pollution, pesticides, and hazardous waste sites).

Cost Analysis

The coalition made a deliberate decision to include estimates of the economic costs of pediatric diseases that were associated with hazardous environmental exposures in the needs assessment.²³

The main economic findings were that the total estimated annual cost of diseases among New York’s children that were considered to be plausibly associated with hazardous environmental exposures is $4.35 billion; the estimated annual cost of environmentally associated pediatric asthma is $125 million; the estimated annual cost of environmentally associated neurobehavioral disorders—including mental retardation, autism, and attention-deficit/hyperactivity disorder —is $1.04 billion; the estimated annual costs of lead poisoning exceed $2 billion, including medical care costs and costs of special education, diminished economic productivity, and increased risk of incarceration; and the estimated annual cost of childhood cancers associated with environmental exposures is $5.4 million.

The economic analysis noted that if the CEH centers could reduce the burden of DDs and NCDs among children and infants in New York State by even one percent, they would pay for themselves many times over.²²

Maps

Multiple maps documenting the presence of environmental hazards in every one of New York’s 62 counties were an important component of the needs assessment.²² These maps were very helpful in persuading legislators from every region of the state that children in their districts were at risk for hazardous environmental exposures and that no region was immune.

Survey of Pediatricians

A survey of practicing pediatricians buttressed the findings of the needs assessment.²⁴ This survey found that more than 90% of New York’s pediatricians encounter diseases that appear to be initiated or aggravated by environmental exposures, but most report discomfort and lack of information in dealing with these conditions. Only 20% of pediatricians reported that they had been trained to suspect the environment as a cause of disease in children.

Funding History

The funding history for the CEH centers was nonlinear (Figure 1). It reflected changes in leadership of state government, fluctuations in the state’s economy, and growing strategic sophistication within the coalition. A timeline is as follows:

• 2005: The assembly awarded a $40 000 planning grant to the coalition to support the CEH centers’ inception.

• 2006–2009: With bipartisan, bicameral support, funding increased from year to year to reach a peak of $800 000 in 2009. This support enabled CEH centers to be established at the Icahn School of Medicine at Mount Sinai (colocated with the Region 2 PEHSU), Stony Brook University School of Medicine, New York Medical College, and the University of Rochester. It also launched planning processes for CEH Centers in Albany, Syracuse, and Buffalo.

• 2010: Funding was eliminated during the state’s fiscal crisis.

• 2011: After the inauguration of Governor Andrew Cuomo, the coalition supporting the CEH centers recalibrated its strategy and initiated direct outreach to the Office of the Governor.

• 2014: The legislature appropriated $1 million to support the CEH centers.

• 2015: No funding was provided.

• 2016: Governor Andrew Cuomo included $1 million for the CEH centers in his gubernatorial budget. The legislature added another $1 million.

• 2017: The governor’s 2017 budget included multiyear support for the CEH centers—a five-year, $10 million request. The New York State Department of Health was assigned oversight responsibility.

• 2018: Seven CEH centers were established, encompassing every region of New York State.

FIGURE 1—

Funding History, New York State Children’s Environmental Health Centers, 2004–2018

CONCLUSIONS

State-based initiatives offer a pathway for advancing public health in times of federal retrenchment. The long and ultimately successful campaign described here to secure state support for a network of CEH centers across New York provides an example of such a strategy.

Key lessons learned were as follows:

1. Build a broad coalition. It is critically important to build and sustain a partnership composed of multiple stakeholders.²⁵ The inclusion of community-based health and environmental advocates in addition to academic health centers, pediatricians, other health care providers, and public health officials was crucial. These groups greatly extended the coalition’s political reach and provided access to otherwise inaccessible areas of government. It was also important that the coalition contained representatives of multiple academic health centers and stakeholders from every region of the state. The sustained existence of this unified front among normally competing institutions and regions signaled to legislators and state officials that there was broad medical support for the CEH centers.

2. Forge partnerships with champions in government. The coalition made a deliberate effort to work with leaders of both parties representing districts in every region of the state. We met frequently with legislators both in Albany and in their home district offices. In the last two years of the campaign, meetings with leaders of state agencies and staff in the Office of the Governor became additional important components.

3. Formal needs assessments and economic analyses are critical. Legislators face many competing demands for resources, and thus data describing the magnitude of the problem of DDs and NCDs, including economic analyses, were very important in persuading legislators and other officials that rising rates of DDs and NCDs among children linked to hazardous environmental exposures were creating a serious drain on the state budget.²⁵ This analysis persuaded government leaders that sustainable CEH centers would be a wise investment and that the network had high potential to pay for itself and thus save the state money.

4. Maps are very important. The decision to include county-by-county maps in the needs assessment was based on the aphorism “all politics is local.” It drove home the message that environmental threats to children’s health are ubiquitous across New York.

5. Iterative charting of a changing political landscape. The political scene in any state is constantly changing. It is therefore essential to closely monitor political trends and to recalibrate a campaign in response to change. Our decision to initiate direct contact with the Office of the Governor in the aftermath of the 2010 election was an example of such recalibration.

6. Persistence. Persistence was a virtue of paramount importance in this protracted campaign. Those who wish to effect change and advance public health must have the fortitude to suffer long days of failure and disappointment.²⁵

Finally, at the culmination of the campaign it was extremely important for the coalition to recognize that we had arrived at a unique moment of opportunity when all of the elements were aligned in our favor and to seize that moment. The economy was improving after a long recession. We had secured bipartisan support from key committee chairs in both chambers of the legislature. We had successfully presented our argument to the Office of the Governor. At that point, we redoubled our efforts and were rewarded with success. The beneficiaries of this long campaign are the children of New York, now and in the future.