Families Against Cancer & Toxics

The CDC/state health department team met with FACT and listened to concerns and expectations. The meeting was cordial, but no decisions were announced regarding a plan to investigate the Sierra Vista leukemia cluster. The CDC team then met with Dr. Witten, and will be meeting families with a child with leukemia in Sierra Vista tomorrow.

In attendence:
Centers for Disease Control and Prevention:
Carol Rubin, DVM, MPH - Chief, Health Studies Branch
Martin G. Belson, MD - Medical Toxicologist
Robert L. Jones, Ph.D. - Chief, Elemental Analysis Laboratory
Beverly S. Kingsley, PhD, MPH - Epidemiologist
John Florence - Communication Officer

Arizona Department of Health Services:
Timothy Flood, MD - Bureau Medical Director
Bob England, MD, MPH - State Epidemiologist

Terry Nordbrock - Mom of Linus, a 5 year old Tucson kid with leukemia and one of the founding members of FACT

Major Concerns
• Too many children in Sierra Vista, Arizona, are getting leukemia.
• There is a pressure to be silent about the cluster, with a suggestion that addressing the concerns is tantamount to economic collapse for Sierra Vista. We urge everyone involved to take a more rational view, and study the cluster in an honest way. If there are pollutants identified, we can use good old American know-how to solve the problem, just as we did in the 1970’s when the catalytic converter successfully achieved automotive exhaust reduction goals.
• It is not acceptable to allow suspected polluters to monitor themselves. We especially need effective oversight of Fort Huachuca and the Kinder Morgan pipeline.
• Cancer registry data is presently under such tight control that the location of children with cancer is actually secret. This contributes to concerns that public health departments are trying to cover up problem areas.
• Our present understanding of what causes many cancers is grossly inadequate. Currently there is very little data being collected for cancer registries and other epidemiological resources. Many parents of children with cancer are surprised that no one asked them any questions that might yield clues about what causes their child's type of cancer.


Expectations from visit
• We expect public health agencies will now take the offensive on the Sierra Vista leukemia cluster investigation and lend the full power of their offices to it.
• We expect that CDC will be taken up on their offer to collect samples from Sierra Vista families and residents for biomonitoring to ascertain toxic body burden. We also hope you test for suspected health hazards that might seem “out in left field,” including tungsten levels, jp-8 jet fuel exposure, depleted uranium exposure, strontium 90 in baby teeth, etc.
• We hope that all the government agencies and other interested parties will work together well. We hope there will be a clear plan detailing responsibilities and action items for each agency/interested party.
• We hope that all voices will be heard, including controversial ones.
• We hope for an end to the hair-splitting over which kids are officially parts of the cluster and which aren’t. It sends the impression that some kids don’t “count,” and makes the health officials seem heartless and uncaring. Find a way to run the registries and cluster investigation so that everyone counts.
• Dr. Tim Flood has mentioned that the State has no jurisdiction on military bases. The investigation will be dead in the water if we do not have oversight over the military. Who does have jurisdiction? How do we solve this problem?
• Dr. Tim Flood has stated that past efforts to require owners of fuel tank farms to provide monthly air samples had failed. How do we give our investigators the authority they need to do this job?
• Dr. Tim Flood has said his office has no budget for tests and no staff for investigating. How do we provide our investigators with these resources?
• We desire that the Sierra Vista childhood cancer cluster be defined as including newborn through 18 years of age. Even though older children are more likely to smoke and engage in sexual practices, we ask that you refrain from saying that to the media anymore, because it casts aspersions on individuals diagnosed with leukemia.
• We expect the investigation to publish statistics and maps of all cancers in Cochise County during cluster period, presented in a way that is easily understood by the public. The public has questions about whether there are significant increases of other cancers and other autoimmune disorders. Include reference ranges so it will be clear if there are higher than expected numbers of other cancers.
• Use GIS to map Sierra Vista cancer registry data, with data layers for childhood leukemia, adult leukemia, and other cancers. Also map toxic release information, flight paths, landfills, on-base dump sites, etc. Making this information readily available on the Internet will go a long way to dispelling fears that information is being covered up.
• Don’t keep registry data a secret. Patient privacy concerns should not be an obstacle to finding out how many diagnoses there have been. Cancer registry personnel should receive the data, anonymize it with geocoding, and release it on a publicly accessible website down to the block group level. (A block group is smaller than a census track but larger than a block; it averages 1100 people). Operating with this level of openness will significantly increase your credibility with the public.
• Epidemiological data and biological samples should be routinely taken at diagnosis from every case of childhood cancer in every state in the country. Simple facts like residential history, parent's occupational history, and exposures to known carcinogens should begin to be collected. We should also invest more effort into tumor banking, as future technology may shed light on today's cancers.
• The Tucson Weekly reports, “CDC did not do the standard test for exposure to JP-8 jet fuel in Fallon.” This is deeply shocking and destroys credibility for the entire Fallon investigation. Make sure that criticisms like this are addressed early in the Sierra Vista process. Provide widespread dissemination of draft reports to all players, especially critics, during the public comment part of the publication process. Solicit their feedback, and then address them before the report is final.
• Be open to the idea that toxins in combination could pose more harm to health than the sum of their parts. (It represented a huge breakthrough in leukemia treatment when oncologists administered the four standard chemotherapies at the same time.)
• Conclusive data for cancer causation is elusive, so we must apply the precautionary principle -- the idea that when an activity raises threats of harm to human health or the environment, precautionary measures should be taken even if some cause-and-effect relationships are not fully established scientifically.

Coalition
It is desirable to have as many creative minds working on the mystery of what causes leukemia as possible, both for this Sierra Vista leukemia cluster and to develop a national policy for cluster investigation. FACT hopes that you will form a coalition and hold a national dialogue, with an invitation to all players, especially those with a different perspective. It is difficult to work together with people of very different opinions, but the final output is far stronger. There would have to be excellent facilitation to ensure that all voices are heard, that no one feels alienated or excluded. Here are some ideas for participants to invite:

• CDC, ATSDR, DoD, Office of Pipeline Safety, EPA, NCI
• State and county health departments
• Children’s Oncology Group
• World-class experts in leukemia etiology, such as Julie Ross and Mel Greaves,
• Cutting-edge creative thinkers in environmental health such as Devra Davis, Sandra Steingraber and Philip J. Landrigan.
• Independent researchers such as Drs. Witten and Shephard
• University cancer community and epidemiology students
• National organizations such as the Trust For America’s Health (TFAH) and the Children’s Health Environment Coalition (CHEC)
• Oncologists with dissenting opinions, such as Dr. Samuel Epstein
• American Cancer Society, Leukemia & Lymphoma Society, etc
• Cancer parent spokespeople like Nancy Keene, and family groups such as FACT

What FACT can offer to the Sierra Vista investigation:
We hope to have a civilizing impact on the conversation. We tend to get along with all parties and hope to facilitate communication and mutual understanding. We will gladly offer a source for feedback.

We will go to bat for this project. If you need us to lobby for better tools to do the job, such as more funding or stronger authority to ensure compliance with your air monitoring samples, we will gladly do this.

Conclusion
Right now there is a lot of public health effort being expended trying to keep a lid on public fears about environmental health issues. But keeping a lid on things has failed to make life easier on epidemiologists and public health staff. Instead it has hardened relationships, destroyed public trust, and converted concerned parents into vitriolic activists. The time has come to try a different approach.

The CDC, state health departments and other government agencies have suffered a loss of credibility relating to cancer cluster research. The public is familiar with stories told in movies such as “Erin Brockovich” and “A Civil Action.” Last week the Union of Concerned Scientists issued their report accusing the Bush administration of systematically distorting scientific fact in the service of policy goals on the environment, health, biomedical research and nuclear weapons. Some have long feared that cluster investigations are similarly distorted, as evidenced by documents such as “Inconclusive By Design: Waste, Fraud and Abuse in Federal Environmental Health Research.” In order to overcome this type of loss of public trust, cancer cluster research has to operate in the sunshine to a much greater extent than it currently does.

Members of FACT applaud your decision to begin a cluster investigation in Sierra Vista. It is said that concerns about disease clusters are the bane of the epidemiologist’s existence. We sympathize with how difficult the work is, and appreciate your efforts.