My name is Dr. Shelley Hearne and I serve as the executive director of the Trust for America's Health - a new nonprofit health advocacy organization committed to preventing disease and protecting the health and safety of our communities. I am very proud to have former Governor Lowell Weicker, Representative Louis Stokes, and Chairman John Porter, along with many other national leaders in public health serve on our Advisory Council.
By way of background, I am an environmental health scientist - serving for almost twenty years in government, non-profits and as a faculty of the Johns Hopkins School of Public Health. Most recently, I was the executive director of the Pew Environmental Health Commission - a blue ribbon independent panel charged with developing recommendations to improve the nation's health defenses against environmental threats.
Let me start by being candid. Our public health service is falling short in its duty to watch over the safety and health of the 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. But there is bad news. The rates of childhood leukemia have been steadily rising for the past two decades. As a nation, we have not invested in preventing chronic diseases.
This health crisis in Fallon is a tragedy. My heart goes out to these families, this community. But as a health scientist, I grow more angry as I watch this story increasingly 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.
Let me give you an example from my home state of New Jersey. Parents in Brick Township complained to politicians and health officials for years about a feared autism cluster in their community. But health agencies could not even confirm the cluster for years because they lacked the most basic investigative tools. New York has a similar story. In Elmira, New York, the state health officials have been investigating an unusually high incidence of cancer among children who attended the Southside High School. Fifty-three (53) cases of cancer have been reported from the 7,500 current and former students who attended the high school since it opened in 1979. Thirteen of the cases were reported in the past three years. The high school was built on land that has served as an industrial site since the Civil War. No one knows why this is happening.
Even though we know about the increasing numbers of chronic disease clusters and the staggering human and financial toll they have on our country, we have no systems in place to detect chronic disease clusters nor do we have the capability to respond to these health crises. Our federal, state, and local agencies only coordinate tracking and responding to infectious diseases such as polio, yellow fever and typhoid. 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 leukemia in Fallon or a nationwide asthma epidemic.
Let me give you some examples of our scattered state health tracking systems from the state of Nevada.
* Even though birth defects are the number one cause of infant mortality, Nevada does not track birth defects. The Pew Commission gave Nevada and 16 other states an F in its report, "Healthy from the Start" which was released in late 1999.
* Nevada does not track developmental diseases such as cerebral palsy, autism and mental retardation even though the National Academy of Science estimates that 25% of these diseases in children are caused by environmental factors.
* Even though studies have shown autoimmune diseases like Lupus to be increasing, Nevada does not have a system to track these diseases.
* Nevada's cancer registry has been severely neglected for years. It is the only state that charges hospitals to report cancer cases - a perfect formula to ensure poor participation.
Unfortunately Nevada is not unusual, it is the norm. This is because our federal government has failed to establish a comprehensive national approach to tracking and responding to chronic disease.
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 crisis 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 crisis 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 website at http://pewenvirohealth.jhsph.edu or http://health-track.org]
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).
The American Chemistry Council supports the concept, noting that "...data generated by a national tracking program can shift the focus from debate and speculation about disease trends to intervention and prevention based on scientific evidence."
Developing prevention strategies are critical to reducing the $325 billion a year Americans spend on chronic diseases. In less than fifteen years, the estimated cost of chronic disease is predicted to rise to $1 trillion. The estimated cost of the Network is about $275 million or less than 1 dollar per every man, woman and child.
These data will allow us to spend our limited treatment and research dollars more effectively by identifying which chronic diseases are increasing. We have doubled our research dollars in the National Institutes of Health, yet these scientists do not have even the most basic information about why these diseases occur, where they strike, whom they choose as their victims, and how to take action to prevent future clusters.
Without a Network, we will remain in the dark; still unable to answer these questions.
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 in Nevada. This is true for almost all states. Nor could CDC or the Agency for Toxic Substances and Disease Registries (ATSDR) give Nevada written guidance, standards or protocols on how to investigate this childhood cluster. The health agencies have never developed a concrete response program to these growing cluster demands.
Due to concerns of Bioterrorism, the CDC is taking many steps toward developing a public health infrastructure including upgrading computer and communications systems for collecting and sharing infectious disease data among local public health departments. We could simultaneously build on these initiatives and enhance these efforts to ensure a nationwide strategy for chronic disease prevention. These are the diseases that Americans are dying from today, not tomorrow's theoretical threats.
On a federal level, there are a few programs that relate to chronic diseases, but do not track and respond to the chronic disease clusters. 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 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 Fallons. And that will be the greatest tragedy of all.