Parents of Fallon leukemia victims seeking answers

Shelley Hearne

Friday, Aug. 23, 2002 | 4:10 a.m.

By Shelley Hearne

Shelley Hearne is executive director of The Trust for America's Health, a nonprofit health advocacy group that has offices in Baltimore and Washington, D.C.

Parents in the Northern Nevada town of Fallon are tired of waiting to find out what is causing an epidemic of childhood leukemia in their town. An overwhelming number of 16 children have been diagnosed with leukemia since 1997. Three of those children have died.

The parents of the young victims are plagued with questions. Is there something in the air? In the water? In the soil? What is it in Fallon that is making so many sick?

Frustrated at the lack of progress made by state and federal investigators, families of the sick children have joined together to form a group to push for more research that will find the cause of the high rates of leukemia. The organization, called Families in Search of the Truth (FIST), has decided to take matters into their own hands by hiring scientific and legal experts to help them find the answers.

Unfortunately, similar clusters of disease are appearing all over the country, and far too often neighborhoods are doing the detective work that should be the job of public health experts. In Brick Township, N.J., the parents of two autistic children and their neighbors plotted out their own map of autism cases in their community.

Breast cancer activists in Huntington, Long Island, conducted a seven-year survey, handing out questionnaires at doctors' offices and beauty parlors. And a South Boston neighbor took her word-of-mouth findings of scleroderma cases in her community to the Massachusetts Department of Public Health.

These and hundreds of other communities are experiencing unusually high rates of disease. But no one can tell them why.

Why are too many of our communities facing so many unanswered questions about their health? Because federal, state and local health officials have not been given the tools and resources they need to investigate and respond to emerging disease clusters.

Health departments across the country are trying to solve modern day health problems with methods used hundreds of years ago. Our nation's neglected public health system falls short in protecting the health and safety of all Americans, particularly when it comes to chronic diseases that may be caused by exposure to environmental factors.

Even though we know about possible disease clusters like the one in Fallon, there is no coordinated state or federal system to document unusually high rates of disease, nor do we have any programs to prevent and respond to them. To modernize our public health defenses, we need to establish a Nationwide Health Tracking Network that tracks chronic diseases and environmental exposures, so that we can identify clusters before they grow larger and prevent diseases before they strike.

Chronic diseases such as cancer, asthma, diabetes, and Parkinson's affect millions of Americans. They are responsible for seven in 10 deaths in this country, and the Centers for Disease Control and Prevention (CDC) estimates that 70 percent of these illnesses are preventable. Many of these diseases are on the rise, and many -- like childhood leukemia in Fallon -- are appearing in clusters, suggesting a potential link to environmental factors.

Legislation introduced in Congress this year, with strong support from Sen. Harry Reid, D-Nev., would establish a Nationwide Health Tracking Network to provide the valuable information we so sorely need. If enacted, the bill would improve the abilities of health officials in every state to monitor where and when chronic diseases strike and explore possible causes.

The cost of such a system is estimated to be about $275 million a year -- that's less than $1 for every American, and just a tiny fraction of the annual costs associated with chronic disease.

Without this important investment in a Nationwide Health Tracking Network, we will remain in the dark, unable to answer the unsettling questions that keep too many parents up at night. Prevention is possible.

But without health tracking, there will be many more Fallons, many more clusters, many more unanswered questions. And that will be the greatest tragedy of all.