When 16 children were diagnosed with leukemia in Fallon 20 years ago, and three died, federal and state investigations failed to pinpoint a cause—but officials said the lessons learned in that outbreak would help the Nevada Department of Health and Human Services detect and respond to future cancer clusters.
Yet despite reforms mandated by the Nevada Legislature in 2003, Nevada health officials today report less cancer-tracking information to the public than they did in 2002. The state’s cancer registry is now a shadow of what it was after lawmakers expanded its budget and clarified its responsibilities.
As a result, the Silver State is apparently even less prepared to deal with a cancer outbreak now than when health officials were caught flat-footed by the Fallon leukemia cluster the early 2000s.
“You want to believe our system works, that we learn from the past, and that (agencies) will try and do better, try to fix the situation,” said Richard Jernee, whose son, Adam, 10, was the first Fallon leukemia cluster patient to die in 2001.
“But it was all just words. I don’t believe (health officials) had any real intention of doing anything.”
No answers from the state
Nevada Department of Health and Human Services officials declined to answer questions about the state’s cancer registry from the Reno News & Review, despite being notified of this story more than two weeks before the RN&R’s deadline.
The newspaper first queried the health department on Oct. 5, and officials said they would work on the request. A week later, they requested written questions. On Oct. 21, the story’s deadline, a department spokesperson told the RN&R that the newspaper’s queries “would require extensive research and staff time.” The registry, she wrote, was unable to respond due to a looming federal deadline for the submission of statewide cancer data to the National Program of Cancer Registries.
That program’s website shows Nevada as the only state without data available in 2019 (the latest year available). Although a 2003 law mandated that the state report cancer-incidence data to the public, the registry hasn’t published a report since 2015. In 2001, the registry launched a public website that allowed anyone to check cancer incidences in each of Nevada’s 17 counties. That site no longer exists; officials declined to say when it was deleted and why.
Jernee, other family members of cancer patients, health-care advocates and researchers who had been involved in the Fallon investigations two decades ago were dismayed that the state apparently failed to follow through with the reforms. But they weren’t shocked.
“I’m not surprised (Nevada officials) backpedaled,” Jernee said. “They serve themselves more than anything else. … The health department was a mess in 2002, and it’s a mess now.”
A boy who liked the Beatles
Richard’s son Adam loved listening to his dad’s classic rock albums—the Beatles and Journey in particular—and playing with Legos. He had a quirky sense of humor and dreamed of being a comedian.
He was diagnosed with acute lymphocytic leukemia (ALL) in late 1999, the third patient in a cluster that eventually included 16 children. His treatment included two rounds of chemotherapy, two bone marrow transplants and radiation. He was in remission from the cancer within a year, but the radiation damaged his lungs, and he died on June 3, 2001.
“He beat the cancer, but the treatment killed him,” Richard Jernee said. “I’ve moved on, but every so often, the whole Fallon experience comes back and bites me. It never goes away. … We never got answers. People deserve answers.”
The first child in the Fallon cluster was diagnosed in 1997. Adam and a 3-year-old boy were diagnosed with ALL in 1999, and six more Fallon children were diagnosed in 2000. That year, a nurse at Fallon Community Hospital became alarmed at the spike in cases and called state officials. By July 2002, more cases surfaced; the state “closed” the official cluster at 16 children.
At the point when 11 cases had been diagnosed, scientists calculated the odds of the cluster being coincidental at 232 million to one. Their paper noted that “a cluster of this magnitude would be expected to occur in the U.S. by chance about once every 22,000 years.” Nonetheless, a top state health official at the time said it could still be random: “Somebody has to win the lottery,” he said.
The patients’ parents didn’t think God was playing dice with the lives of their children. They lobbied for a federal probe and found a passionate ally in the late Sen. Harry Reid, who supported a Centers for Disease Control and Prevention investigation and later secured federal funding for further research. Some of the parents also testified at the Legislature, asking for the state to more effectively track cancer outbreaks, and to analyze cancer case data to spot trends.
In 2001, state health officials said the state’s cancer registry on its own would not have detected the outbreak for years—if ever. The agency had been on a downward slide for a decade. In 1989, national health officials praised the Silver State’s registry as a national model. But 10 years later, the registry consistently failed to meet national standards and reported less cancer incidence information, less frequently, than it did a decade earlier. The state collected data, but didn’t analyze it. In 1993, doctors and a hospital representative told an Assembly committee that the registry had become useless.
Officials blamed tight state budgets for the registry’s decline, but said they wanted to make the registry an efficient public health tool. The 2003 Legislature amended the registry law and clarified its responsibilities for analyzing data. The late Sen. Joe Neal—the reform bill’s sponsor, who also backed cancer-tracking bills in 1983—said the registry wasn’t following the intent of the law. Neal, along with the late Assemblywoman Marcia de Braga, spearheaded the 2003 law changes. Those amendments required the registry to look for trends in cancer cases and to investigate possible outbreaks—the things it was initially created to do.
Between 1990 and 2001, the registry’s budget, the bulk of which comes from federal grants, ballooned from $66,000 to $417,000. The annual allocation doubled in the years following the 2003 law change—but was cut in half by 2020. Its budget topped out at $1.1 million in 2009, but by 2020, the registry’s allocation was down to $680,790.
The state-funded portion of the registry’s budget was increased in 2021, when lawmakers passed a bill to tax certain medical equipment to provide more funding for the agency. The increase was touted as allowing the agency to hire more two staff members to help it reach “full compliance with reporting standards.”
In 2023, the registry’s budget will be $1.2 million, according to legislative records. It’s unclear whether the funding increase will help restore the registry’s lost functions.
Federal investigation ‘inconclusive’
On the CDC’s current map of national cancer statistics, Nevada is the only blank spot, because the Silver State “did not meet (federal) publication criteria.” The 2003 law requires the registry to investigate any unexpected cancer trends, but it’s unclear whether any such investigations occurred.
Those topics were among the queries that state officials said they had no time to answer.
During the Fallon leukemia outbreak, the state health department was the initial agency investigating the cluster. At the time, the families of the leukemia patients were frustrated with the slow pace of the state’s response.
After the surge in Fallon cases was confirmed, state officials spent about a year developing a questionnaire to be given to patient families, and a control group. No common environmental exposures were flagged that might explain the spike in cases.
About 1,000 suspected cancer clusters are reported to state health departments each year, according to the American Cancer Society. From 1961 to 1982, the CDC investigated 108 reported cancer clusters, but no clear cause was determined for any of them. After federal officials declared the Fallon outbreak as the “most significant and verifiable” childhood cancer cluster on record, the CDC launched an investigation that was more costly and extensive than any it had done before.
The late Floyd Sands, whose daughter, Stephanie, was the second patient in the cluster to die, had high hopes for the probe, which employed new technology to assay tiny traces of elements in human bloodstreams. But Sands and other parents of leukemia patients were soon disappointed.
Health investigators collected air, water and soil samples from the patients’ properties—but those samples were collected at the homes where the children lived at the time of the investigation, rather than the places they lived when they were diagnosed. Another federal agency collected statements from local industries, relying on self-reporting rather than independent research.
When parents complained that the methodology seemed illogical, the federal and state investigators were often condescending. “We have protocols,” parents were told. “You just don’t understand science.”
The Fallon community mobilized to help the families affected, but there also was a backlash against the publicity surrounding the cluster. A TV show dubbed Fallon “Cancer Town, USA”; a documentary about the cluster was initially titled Deadly Oasis; and 60 Minutes reported on the cluster. Fallon home prices sagged, and properties listed for sale languished on the market. Some residents—and businesses—moved out of town.
In 2003, the CDC declared its investigation inconclusive. The only anomaly found was unusually high levels of the element tungsten in both the bodies of the patient families and the control group.
Some researchers got results
While the state and CDC were conducting their tests, some of the patient families and independent investigators took action. Floyd Sands in 2002 organized a door-to-door cancer survey in Fallon, which uncovered other possible outbreaks, including a suspected cluster of brain cancer.
State health officials rejected Sands’ findings as unscientific, but other experts told the Reno Gazette-Journal at the time that even though Sands’ survey didn’t follow standard protocols, the results were compelling and warranted more investigation.
That never happened.
Two Arizona researchers got involved at the request of some of the families. Dr. Mark Witten, a toxicologist and professor of pediatrics at the University of Arizona, exposed lab rats to jet fuel, a suspected cause of the outbreak, but soon ruled it out. His colleague, Dr. Paul Sheppard, analyzed the traces of chemicals in tree rings and found high levels of tungsten and cobalt in the trees around the town.
Witten’s experiments indicated that those two elements could alter the genes in lab rats. Those findings were replicated, Witten said. In addition, Witten found evidence of a viral outbreak in Fallon prior to the leukemia cases surfacing—something that also happened in Sierra Vista, Ariz. That town, which also has high tungsten levels, weathered a childhood leukemia cluster at the same time as Fallon.
“Basically, we have it solved,” Witten said. “In both Fallon and Sierra Vista, we have a virus and tungsten. I believe it’s a double-hit.” He said the combination of the virus, along with chronic exposure to tungsten, could explain both outbreaks.
Sheppard, who pioneered the use of tree-ring cores to track environmental pollutants, also uses other data types in his research, including soil, inhalable dust and lichens and mosses. Other scientists have since embraced his techniques, which have been used to track environmental pollutants in Chile and investigate a childhood cancer cluster in Clyde, Ohio.
Sheppard said cancer registries need to do a better job of detecting outbreaks.
“We can’t depend on the system we had then and still have now: a bunch of mothers from the same community running into each other in an oncologist’s office,” he said. “We can’t depend on a system where the case data is two or three years old.”
He noted that cancer reports come into registries as they are diagnosed, but the agencies take years to verify the data. When an unexpected number of cases comes in from a given area, he said, there should be a way registries can flag that spike in real time. “Amazon and other companies instantly update customers’ information,” he noted. “We have the technology, but it’s not being used.”
For the last 20 years, Witten and Sheppard have continued to investigate cancer clusters all over the country. They also are helping the Trevor’s Trek Foundation, which was founded by Charlie Smith, the mother of a brain-cancer patient. Smith spearheaded Trevor’s Law, passed in 2016, which requires the CDC to regularly revamp its guidelines for cancer-cluster investigations.
“We can’t depend on the system we had then and still have now: a bunch of mothers from the same community running into each other in an oncologist’s office. We can’t depend on a system where the case data is two or three years old.”
Dr. Paul Sheppard, who uses tree rings to detect pollutants over time
That process also is moving at a glacial pace. The CDC began updating the guidelines through 2018, and solicited public comment on the changes the following year. So far, Congress has allocated $4.5 million for the effort.
Trevor Schaefer, the law’s namesake, was 13 in 2002 when he was diagnosed with brain cancer, one of five such cases diagnosed in his small Idaho town that year. Health officials told his mother that the town was “too small to have a cancer cluster” and that so many cases were just bad luck. Those attitudes sent Smith on the path to improve the way cancer clusters are tracked and investigated.
Now 32, Schaefer is cancer-free and is the executive director of the Trevor’s Trek Foundation. He said all over the country, patients’ parents have the same story.
“When residents are concerned about unexpected high numbers of cancer in their communities, they get the run-around from health officials,” he said. “They juggle the numbers and say there’s nothing wrong, or that the population is too small for the numbers to be significant.”
Schaefer said community members worry about the economic impacts of being branded with a cancer cluster, and health agencies often deny there’s a problem, or they slow-walk investigations.
“It seems that a lot of people don’t care (about cancer outbreaks) unless they are affected personally,” Schaefer said. “It’s hard to change people’s mindsets. Agencies need to be held accountable. … Cancer patients are not just numbers in a report. Investigating clusters is not an academic exercise.”
The CDC is expected to publish new cancer-cluster guidelines next year, and Schaefer remains optimistic.
“We’ll get it done,” he said. “The law is just the beginning.”
Witten, who, with Sheppard, is currently investigating a cancer cluster on the East Coast, isn’t so sure agencies will ever do what is necessary to track clusters and dig deep to find environmental causes.
“But we’re not giving up,” Witten said. “There’s too much work to do.”
Richard Jernee, meanwhile, said his grief over Adam’s death is compounded by the knowledge that in the 20 years since cancer changed so many lives in Fallon, many other communities have weathered cancer clusters.
“It isn’t bad luck when so many kids get sick in a small area,” Jernee said. “Something is responsible for it. People need answers. The Fallon families still need answers.”
RN&R editor Frank X. Mullen wrote more than 70 stories about the Fallon cancer cluster between 2000 and 2011 while a reporter for the Reno Gazette-Journal.
Great story as usual Frank!!!
Let’s go to the department website and look at the organizational charts to determine where things went wrong. They are public information, right?