During my daughter Stephanie’s 26-month struggle with leukemia one of the hardest things for me to
deal with personally was the realization that I was utterly powerless to help her in many ways. Parents
of Children fighting cancer are only able to provide love, comfort, reassurance and support; we are
not able to bring about a cure for our Child, nor are we able to relieve their suffering. We are seldom
able to answer their questions or to quell their fears. Children perceive their parents as being able to
fix anything, to sooth any hurt, to always be able to make everything right. Children perceive their
parents as nearly god-like. Yet when our Child is struck down by cancer we realize how powerless,
how impotent, how completely unable to help our Child we really are.
It is much the same for a community experiencing a disease cluster.
A year and a half into Stephanie’s struggle I learned of the Fallon Childhood Leukemia Cluster and
Stephanie’s case was soon included. As time wore on I watched and worked with the Nevada State
Health Division, US CDC/ATSDR, state and local governmental agencies, and others as they
conducted their various studies, public meetings, PR events, news releases and public utterances.
At the beginning I believed that a genuine scientific study of the Fallon cluster had been undertaken,
that our governmental agencies were “on the ball” in doing the right things at the right times and for
the right reasons. I had always believed that our government truly served the People. Little by little
and over time, and through a long series of events I began to doubt the official efforts being made in
Fallon. I began to pay much closer attention.
It became evident through a great number of conflicting official statements, position reversals,
cleverly punctuated reports, and blatant collaboration with Fallon’s business and industrial interests
that not all was as we had been made to believe as concerns the investigation into the Fallon
Childhood Leukemia Cluster. I witnessed the statements and actions of the Nevada State Health
Division, US CDC/ATSDR and others as they slowly drove a wedge between the community and the
Fallon leukemia Families. I watched as these agencies methodically and slowly isolated the Fallon
leukemia Families from their own neighbors and supporters. I witnessed these agencies gradually
desensitize, then de-humanize and then finally demonize the Fallon leukemia Children and their
Families. I watched as these agencies marginalized then trivialized our Children and our Families. I
watched as these agencies announced their utter failure in determining causes and contributors to
the Fallon cluster. I watched as these agencies fairly reveled in their failure. I watched as the Fallon
Childhood Leukemia Cluster became these agencies’ 109th consecutive failure at cancer cluster
investigation, and just as they had foretold.
I became outraged, yet I remained silent. I was silent because I did not know from where help for
Steph may come. I was silent because of my time spent in hospitals. I was silent because I feared the
power of our government. I was silent because I was afraid to rock the boat. I was silent because I
feared Public opinion.
From my silence grew shame. Shame because I had not posed the questions, shame because I had
not overcome my fears, shame because I had allowed myself to be lied to and lied about, shame
because I had not stood my ground and demanded Truth.
The official investigation into the Fallon childhood leukemia cluster stands as the most powerful
example of how not to conduct a cancer cluster investigation. A college instructor in California uses
the example of the Fallon childhood leukemia cluster investigation as course material on how not to
succeed at determining the causes and contributors of disease clusters.
It is my dream and my personal vision that I help communities facing emerging disease clusters.
It is my dream and my personal vision to contribute to those communities’ efforts to become
empowered, to become self determining, to take their futures into their own hands, and to mentor
those communities as they seek answers to the problems which they face.
It is my dream and my personal vision to travel to these communities and to work with them in their
daily struggles.
It is my dream and my personal vision to help develop and build a new way of thinking and a new way
of studying emerging disease clusters, to access and share the tools and resources necessary to
build bridges between communities, governmental agencies and the Future.
It is my dream and my personal vision that no community ever endures what Fallon, Nevada and our
Children endured, and lost.
Medical News & Exposé
epi
2008 Statement by cancer cluster activist Floyd Sands,
who died in May of brain cancer
Editor's note: This statement is reproduced verbatim from the National Disease Clusters Alliance
website, www.clusteralliance.org/