The Need for a Nationwide Health Tracking Network
Testimony of Lynn R. Goldman, MD, MPH
Professor, Environmental Health Sciences
Johns Hopkins Bloomberg School of Public Health, Baltimore, MD
Senate Environment and Public Works Committee Field Hearing
June 11, 2001

Chairman Reid, Senator Clinton, and members of the New York Congressional Delegation, thank you for the opportunity to come to New York to provide real perspective to our nation's ability to respond to crises in our communities.

My name is Dr. Lynn Goldman and I am a pediatrician and an environmental epidemiologist. I have an extensive background in the area of pesticide health and environmental effects and environmental risks to children. Between 1985 and 1992 I served in various positions in the California Department of Health Services, most recently as Chief of the Division of Environmental and Occupational Disease Control. Among other things, I was responsible for the conduct of a number of epidemiological investigations of the impacts of environmental exposures to health, especially the health of children. I carried out several investigations of childhood cancer clusters. In 1993 I was appointed by President Clinton and confirmed by the Senate to serve as Assistant Administrator for Prevention, Pesticides and Toxic Substances at the US Environmental Protection Agency (EPA). In that position, I was responsible for the nation's pesticide and toxic chemicals regulatory programs at the EPA. In January 1999 I left the EPA and joined the Johns Hopkins University where I presently am Professor at the Bloomberg School of Public Health. I served as the principal investigator for children's health for the Pew Environmental Health Commission - a blue ribbon independent panel charged with developing recommendations to improve the nation's health defenses against environmental threats. I currently am a member of the Environmental Defense Board of Trustees.

Our public health service is falling short in its duty to watch over the safety and health of Americans, particularly when it comes to chronic diseases that may be associated with environmental factors.

Chronic diseases are responsible for 7 out of 10 deaths in this country. More than a third of our population, over 100 million men, women and children suffer from chronic diseases. These diseases cost our citizens and government, $325 billion a year. By 2020 chronic diseases are estimated to afflict 134 million Americans and cost $1 trillion a year. And the CDC estimates that 70% are preventable.

But our federal government is not actively pursuing how to prevent this epidemic of chronic diseases.

As a nation, we have been increasing our research into how to treat disease. As a result, we have some good news here. More children with leukemia survive today than ever before. We have also seen some success with reducing exposure to tobacco and the marketing of tobacco to our children. But there is bad news. The rates of a number of non-smoking related cancers -- childhood brain cancer, breast cancer, non-Hodgkin's lymphoma, liver cancer, myeloid leukemia, thyroid cancers and a several other tumor types -- have been steadily rising for the past two decades. A review of the National Cancer Institute Atlas of Cancer Mortality shows clear geographic differences in rates of a number of cancers, differences that should serve as clues for follow-up studies and efforts to prevent cancer. As a nation, we have not invested in preventing chronic diseases.

You heard today from those who have experienced first hand the tragic cluster of childhood leukemia in Fallon and the breast cancer epidemic on Long Island. These crises are tragedies on both the personal and community level. My heart goes out to these communities. But as a health scientist, I am aware that this is problem that is repeated in communities all across the country. In 1997, there were almost 1,100 requests by the public to investigate suspected cancer clusters. Many of these are preventable diseases; preventable tragedies and our public health resources are insufficient to effectively respond to these challenges. In too many cases, there was not the capacity to investigate these problems.

Even though we know about the increasing importance of chronic diseases and the staggering human and financial toll they have on our country, we have no systems in place to track chronic diseases nor do we have the capability to respond to these health crises. Our federal, state, and local agencies only systemically track and respond to infectious diseases such as polio, yellow fever and typhoid. These are diseases that a national tracking and response system helped to eradicate back in the late 1800s.

Over a century later, we never modernized our public health system to respond to today's health threats. As a result, we are hamstringing our health specialists from finding solutions and effectively taking action - regardless if it's childhood cancer or a nationwide asthma epidemic.

As a former chemical and pesticide regulator, I am appalled by the lack of information to make wise decisions about chemicals in the environment and our inability to be sure that we are doing what we should be doing to prevent chronic diseases. In 1997, Environmental Defense looked at what we know about chemicals in commerce at high volume (greater than a million pounds a year) in the US. They found surprising and disturbing gaps in the information available to government and the public, a finding later confirmed both by EPA and by industry. Indeed, EPA's analysis indicated that that only 7% have screening level information about toxic effects and more than 40% have no information at all. To compound our ignorance, we do not know which chemicals are winding up in our bodies and the bodies of our children. For example, which contaminants are in breast milk? This is basic information that is needed, both to understand the risks and more importantly to make the right decisions to protect the public from harmful exposures.

Clearly, we cannot make wise decisions about the risks of chemicals given this state of ignorance. Incentives need to be created to generate information about hazards and exposures to industrial chemicals that are in our food and water, products used in the home and intended for children, and in the workplace.

Further, we also need this tracking information so that we can carry out the studies that will identify what might be causing high rates of chronic disease in communities in the US. Let me give you an example of our scattered state health tracking systems

* With the Pew Commission I wrote a report on birth defects that rated the state's efforts to monitor birth defects. Even though birth defects are the number one cause of infant mortality, 17 states do not track birth defects. The Pew Commission gave Nevada and the 16 other states an F in its report, "Healthy from the Start" which was released in late 1999. New York received a "B", meaning that while there are good efforts underway the registry does not collect data that are compatible with the national standard set by the CDC. As a result, data from New York can't necessarily be compared to those from other states, hindering the ability of scientists to determine patterns of diseases and their causes.

* Whereas the National Academy of Science estimates that 25% of developmental diseases such as cerebral palsy, autism and mental retardation are caused by environmental factors, only a handful of states have any efforts at all to track these diseases.

* Cancer registries in many states have been severely neglected for years. Even in California, when I was there, we saw support deteriorate to the point where the registry could collect the data, but not analyze it or use it to take action to respond to cancer threats.

The Pew Environmental Health Commission based out of the Johns Hopkins School of Public Health studied our nation's capacity to identify and respond to chronic disease clusters for two years and proposed creating a Nationwide Health Tracking Network to solve this problem.

The Nationwide Health Tracking Network is based on four principles: 1) building a coordinated system of tracking chronic diseases and associated environmental factors; 2) providing the resources and training to local health departments to analyze the data; 3) immediately responding to health problems identified through the system; and 4) providing the national leadership to coordinate health and environmental activities throughout the federal government so that these programs do not operate in isolation of one another.

The Nationwide Health Tracking Network consists of five components:

1. Establishing essential data collection systems: The first component builds on existing health and environmental data collection systems and establishes data collection systems where they do not exist. The Network will coordinate with the local, state and federal health agencies to collect this critical data. In all fifty states, the Network would track:

* Asthma and other respiratory diseases;

* Developmental diseases such as autism, cerebral palsy, and mental retardation;

* Neurological diseases such Alzheimer's, multiple sclerosis, and Parkinson's;

* Birth defects; and

* Cancers, especially in children.

The Network also would track exposures to:

* Heavy metals such as mercury and lead;

* Pesticides such as organophosphates and carbamates;

* Air contaminants such as toluene and carbamates;

* Organic compounds such as PCB's and dioxins; and

* Drinking water contaminants, including pathogens.

Building upon the existing systems for infectious diseases, the federal government will establish the standards for the health and exposure data collection necessary to create uniformity throughout the system. With federal resources such as funding, training and lab access, state and local public health agencies will collect, report and analyze the data.

2. Creating an Early Warning System: The second component is an Early Warning System that would immediately alert communities of health crises such as lead, pesticide and mercury poisonings. The existing system of local health officials, hospitals and poison centers that alert our communities to outbreaks like food illness and the West Nile virus would also alert our communities to these health crises.

3. Improving response to chronic disease emergencies: The third component consists of improving our response to identified disease clusters and other health crises. The Network would coordinate federal, state and local health officials into rapid response teams to quickly investigate these health problems, providing the teams with trained personnel and the necessary equipment

4. Addressing unique local health problems: The fourth component is a pilot program consisting of twenty regional and state programs that would investigate local health crises and clusters that are currently not part of the Nationwide Health Tracking Network. These programs would alert the public and health officials to new developing disease clusters outside of the Nationwide Health Tracking Network. These pilots programs also would serve as models for tracking systems for inclusion in the Network.

5. Creating community and academic partnerships: The fifth component establishes relationships with five Academic centers and with our communities. Our community relationships would ensure that the tracking data is accessible and useful on a local level, and our research relationships would train the workforce, analyze data, and develop links between the tracking results and preventive measures.

[The background and basis for this Network and other Commission findings and recommendations are attached as part of the written testimony. These are also available on the Commission's website.]

This Network would provide our communities, scientists, doctors, hospitals and public health officials with missing data on where chronic diseases are clustering and associated environmental factors that would enable us to develop prevention strategies. Over thirty key health organizations have endorsed this recommendation, ranging from Aetna US Health Care to the American Cancer Society to the American Academy of Pediatrics to the Association of State and Territorial Health Officers (ASTHO).

Developing prevention strategies are critical to reducing the $325 billion a year Americans spend on chronic diseases. As noted above, the estimated cost of chronic disease is predicted to rise to $1 trillion in less than fifteen years. The estimated cost of the Network is about $275 million or less than 1 dollar per every man, woman and child.

It is ironic that we have mapped the entire human genome and yet we don't have the most basic information about the diseases that are killing us. We are learning about the genetic susceptibilities in the population but we do not have a clue which chemicals might be triggering these genes to create disease. We have learned how to spend millions upon millions to treat chronic diseases like asthma and cancer but the federal government has not identified the reasons why asthma and rates of certain cancers are rising. We need to spend our tax dollars more effectively by identifying which chronic diseases are increasing and which exposures may be impacting our health.

The most cost effective use of tax dollars today would be to invest in preventing the leading killers in this country. And the American public agrees. The American public is so concerned about this issue that 63% feel that public health spending is more important than cutting taxes. Seven out of ten registered voters (73%) feel that public health spending is more important than spending on a national missile defense system.

A recent public opinion poll by Princeton Survey Research Associates revealed that nine out of ten (89%) registered voters support the creation of a national system.

Most local health departments face declining funding, inadequate training for staff, limited or no laboratory access, and outdated information systems. CDC and ATSDR have not been able to adequately help. For instance, there is no federal funding for an environmental health specialist or even chronic disease investigator almost all states. Nor does CDC or the Agency for Toxic Substances and Disease Registries (ATSDR) give states written guidance, standards or protocols on how to investigate the cancer clusters.

On a federal level, there are a few programs that relate to chronic diseases, but do not track and respond to the increases in rates of chronic disease. The irony is the Administration's proposed budget recommends severe cuts for the nation's chronic disease prevention programs. We need to be going in the exact opposite direction. Health defense should be the country's number one commitment.

Who is guarding our health? The answer is that the public health service has fallen short of its duty -- lacking the tracking, troops and leadership. This is exactly where our federal government is needed - to develop the tracking and monitoring systems, supply the troops and offer the leadership to prevent chronic disease.

To modernize our public health resources so that we can identify clusters before they grow, we must take rapid action to control their spread and find solutions to prevent diseases. CDC must be given the direct mandate to aggressively respond to communities' concerns like those on Long Island and in Fallon, with modern tools and health-tracking systems. And Congress must prioritize $275 million per year, less than a dollar per person to make this happen. It is just a tenth of one percent of the overall spending of health care dollars in this country.

Without this type of investment, we will only watch asthma, certain cancers and other chronic disease rates continue to rise. There will be many more lives lost to preventable diseases. And that will be the greatest tragedy of all.

Thank you for the opportunity to testify today.