Dead Ends
In January 2013, Janis Copeland called her daughter. “I think something is going on with my sinuses,” she said. “I’ve started smelling this weird smell, like a sulfur smell.” A few weeks later, the aroma was so strong that she hobbled to the neighbors’ house to ask for help. She knew her own name, but she couldn’t remember the year. And she didn’t know who the president was. Her neighbor helped her into the car and raced toward the hospital.
Kyle Burke was next.
His wife, Vickie, arrived at their home to find his car running in the driveway, the radio blaring. She went inside and discovered him facedown on the floor, coat still on, blood streaming from his mouth and puddling on the floor.
“What happened?” she said.
“I just don’t feel good,” he mumbled.
Paul Bridges knew something was off when he stepped onto the karate mat and had trouble balancing as he bowed. He owned a martial arts studio and had competed across the country for decades. In the middle of December 2014, he started vomiting. He assumed he had the flu, and his wife dropped him off at the doctor’s office. He felt so terrible, he decided to stagger across the street to the emergency room.
Betsy Smith started feeling fuzzy at times and couldn’t find the right words to say. Her sister had felt the same way right before she found out she had a dangerously low level of Vitamin D. Prescription medication fixed the problem. Betsy assumed she, too, would get off with an easy fix. After having tests run at the hospital, the doctor came out to see her.
“Is someone here with you?” he asked.
“No,” Betsy answered. “Tell me what’s going on.”
The scans showed a brain tumor the size of an egg.
And so it went. After these people living in and around New Castle found themselves at the hospital, after MRIs and CT scans revealed the tumors, after ER doctors consulted with oncologists who consulted with specialists, after they tried not to Google an explanation, after the results of the biopsies came back, after they grappled with the fact that it was possible to be fine one minute and dying the next, they all received the same diagnosis: glioblastoma multiforme.
No cure. The fastest, most aggressive cancer there is. Even with surgery, requires chemotherapy and radiation. Even if treatment works, 100 percent chance of return. It always comes back. Six months to a year to live. Three in 100,000 diagnosed. Rare.
That last detail didn’t sit well with the folks who lived in Henry County, population 49,462. If the cancer was uncommon, why did more than 20 people, several within a square mile, have the disease?
Karate studio owner Paul Bridges’s daughter, Aundrea Dailey, was the first person to suspect the cases were linked. In May 2015, she hosted a fundraiser for her father at Montgomery’s Steakhouse, in nearby Spiceland, to raise $50,000 for a genetically engineered poliovirus that had shown promise in glioblastoma patients in a study at Duke Cancer Institute. A friend volunteering as the auctioneer for the event stopped to chat. He asked if she had heard about Betsy Smith and another friend, named Clyde.
“Glios,” he said, using the shorthand the town had adopted to talk about glioblastoma.
Aundrea was shocked. She resided on West Fair Oaks Road, five miles south of New Castle. The road stretches only about a half-mile long, through corn and soybean fields. Her father’s house was just around the corner. Betsy was her neighbor. Clyde had been, too, before he passed away. All three lived within a mile of each other. Could their diagnoses really be a coincidence?
A few days later, Aundrea saw Betsy’s husband, Burke Smith, on the side of the road, so she pulled over for an update on her neighbor’s condition. Burke said Betsy’s glio was operable, but the doctors warned that it always returns. Then he confirmed the news about their next-door neighbor, Clyde, who had died just before Aundrea’s father was diagnosed. The two talked for what felt like hours. The information wasn’t much, but it was enough to get her started. Along with helping run her father’s karate business and raising six kids, Aundrea began investigating a possible connection.
What about the well water? We all use it. Aundrea had a family friend on the township’s water-advisory board. The board member connected her with a man (who wanted to remain anonymous) with potential information. Though the rumor was never proven, the source said, he had heard that a local truck stop was shut down due to water contamination. He suggested they have their water tested.
Aundrea and her kids stopped drinking water from their well, and she began taking 15 one-
gallon jugs into the New Castle city limits to fill the containers several times per week. In July 2015, she called the Henry County Health Department to explain the situation and ask about testing. After she told the story, the county health employee asked her to come into the office to fill out a concerns sheet. Aundrea would also need to contact Amanda Raftery, the Indiana State Department of Health’s chronic-disease epidemiologist—basically, a public-health professional who studies disease patterns.
Paranoia crept across New Castle. Residents didn’t just wonder if the cases were linked—they assumed they were.
Aundrea talked to Raftery on the phone. She had just hoped to get their water evaluated, but then Raftery mentioned the possibility of a cancer cluster. Raftery asked her to fill out a “Cancer Cluster: Case Report Form,” a way for the state to gather information from the community about people diagnosed with cancer. Aundrea filled out the names, ages, death dates, cancer type, diagnosis dates, relationships, and smoking habits of the people she knew about. At that point, there were seven on her list: her father, his neighbors, and three others.
Kyle Burke, for one—the man whose wife had found him bleeding from the mouth. He had died in 2014. His diagnosis was the first time Aundrea had heard about glioblastoma. In fact, hundreds of people in the area had been following along with his case: His wife, Vickie, posted personal, detailed updates on her Facebook page. Aundrea had appreciated reading about how the small town rallied around the family. Locals would often pay for their groceries, or give the Burkes’ sons pizza free of charge.
In late July, Aundrea received a packet of information and a letter from the state that said they were looking into her inquiry of a potential cancer cluster in Henry County. The first thing she noticed was that her name was misspelled: the correspondence was addressed to “Audrea Bailey.” Aundrea took the mistake as a bad omen—was this the kind of care the state was going to put into the investigation? The letter from Raftery said that many people were concerned about the possibility of cancer clusters in the state of Indiana and that several were reported every year. Aundrea was furious. There were three people on her street with glioblastoma, and she was sent a form letter, lumped in with all the others. As far as she was concerned, her community had just been blown off. Aundrea contacted WRTV. On August 4, 2015, Henry County made the Indianapolis evening news.
Vickie Burke lost husband Kyle to glioblastoma multiforme in 2014.
As soon as the story aired, paranoia and fear crept across the New Castle area. Folks theorized about the cancer cluster in church pews and around tables at Stacks Pancake House and Restaurant and in break rooms at the local hospital. WRTV had highlighted Aundrea’s water theory. Calls flooded New Castle mayor Greg York’s office. He told another Indianapolis station, WXIN, that he didn’t think the cluster was being caused by anything in the water, but he appreciated the state’s involvement—testing the water could be expensive, and he was grateful the families involved wouldn’t have to bear the burden.
Everywhere they went, the glio families were bombarded with the most popular question in town: What do you think it is? Residents didn’t just wonder if the cases were linked—they assumed they were. And theories were all over the map. Was it the nearby landfill? The local junkyard? New Castle’s history of manufacturing everything from sheet iron to caskets? Didn’t the city water lines go through the cemetery? Hadn’t the power lines been buried underground a few years ago? And what about the farms, surrounding the city on all sides? All that pesticide and fertilizer? A few families began eating only organic foods. The wildest theory came from a man who left dozens of Facebook posts for both Aundrea and Vickie. He was convinced the cluster was caused by radiation from flyovers from an Ohio Air Force base—he had the data, he said, to prove it. Everyone seemed to want to play Erin Brockovich.
One day, Aundrea heard someone refer to her road as “Cancer Street.” But who beyond her circle had the same disease? Once the news story broke, someone posted it on the Concerned Citizens of Henry County Facebook page—a closed group where the community posted about everything from lost pets to local elections. Aundrea put up a comment asking for names and information of other people diagnosed with glioblastoma multiforme. Her phone began buzzing with dozens of incoming messages and notifications. “I was so freaked out I could barely sleep that night,” she says.
Her list, the one she originally sent to the state, quickly grew from seven people to more than 25, including a woman who had lived in New Castle before she retired and moved to Florida. The woman had lived on West Fair Oaks Road—“Cancer Street.”
Aundrea and Vickie talked about making a map of where every person with brain cancer lived in the county. They made plans to go through old yearbooks to contact people who might have moved away. Aundrea submitted the new information to the state on August 26, 2015. The town waited.
On September 25, 2015, Aundrea’s father passed away. At the funeral, her mother stood at the front of the room and asked everyone to push the chairs to the perimeter of the group. Then, she led everyone in a kata and bow-out, both karate moves, as a final memorial to her husband. Men and women in suits and dresses followed her directions to do a series of punches and kicks with a final, synchronized bow.
As Aundrea took a break from investigating to mourn her father and collect her thoughts, the Indiana Department of Health remained silent. Then, on October 12, WTHR reported that the state was nearly done with its investigation and would release the findings in a month.
Aundrea and the other glio families were furious. Why was the local news given information before the people whose lives had been touched by the disease? Just as quickly as theories about the cluster had spread, so now did criticisms of the investigation—one they had not been privy to.
According to the television report, the state had been reviewing data and interviewing people to determine if there were any “common contaminants of environmental factors among the illnesses.” But as far as the families knew, no one in the town had been questioned by anyone from the state health department. Aundrea and Betsy’s husband, Burke, had talked with Raftery, the state epidemiologist, on the phone, but the conversations had been brief. Stephanie Holman, whose mother’s tumor manifested as weird smells, had called in to share information with Raftery, but she was only on the phone for a few minutes.
Additionally, the residents assumed the state would evaluate water and soil samples, but the department of health confirmed in subsequent stories that it did not. Instead, officials explained, the state encouraged those who were concerned to arrange their own testing.
Aundrea believes this was the first time anyone in Henry County had heard this information. Mayor York added his voice to the public criticisms. “I’m a little disappointed in the state, that they’re not financially taking some responsibility here and doing their due diligence to get this further along,” he said to WXIN. York, too, had assumed the state would conduct water and soil testing, he said, because he didn’t understand how a thorough investigation could omit those tasks. He announced that a recent anonymous donation would be used by the city to test Betsy’s well—hers was the only house on “Cancer Street” where someone with glioblastoma was still living. The test cost $1,200.
After the WTHR story, Burke contacted the state, volunteering to be its “foot soldier”—he would be happy to knock on doors and collect information. But after making a half-dozen calls to various employees within the health department, Smith found no takers for his offer.
Frustrated, Aundrea contacted the county health department and told them she planned to write a letter to the Centers for Disease Control about what was, in her opinion, a horribly handled investigation by the state. A few days later, the Indiana Department of Health sent out a press release with some new information. The investigation was in fact not over. They were seeking input from the CDC and the Agency for Toxic Substances and Disease Registry, an arm of the U.S. Department of Health & Human Services. They also announced that Dr. Jerome Adams, the Indiana State Health Commissioner, was coming to New Castle for two meetings on November 4, a private meeting for the glio families and another for the public.
USA Today ran a story with the headline “Rash of brain cancer cases in Indiana sparks probe.” Perhaps the state is finally going to take this investigation seriously, Aundrea thought. Vickie tried to keep her expectations realistic, but she couldn’t help but be hopeful, too. She was tired of the fear and speculation. They all were. She dreamed about walking into the meeting and hearing officials say, “We have found something. We think this is the answer.”
The efforts of Dailey and others led to a visit from Dr. Jerome Adams, the Indiana State Health Commissioner.
When Dr. Jerome Adams stepped to a podium inside the Henry County Courthouse and spoke into a bank of microphones, he had answers for the 50 who had squeezed into benches in a second-floor courtroom and the reporters who stalked the room with notebooks and cameras. But he didn’t have the answer.
Aundrea—her eyes still red from crying during the earlier private meeting with Adams—listened as the state’s top health official walked the crowd through the investigative process (and its limitations) to an unsatisfying conclusion.
He explained the state was working with data culled from a cancer registry, one maintained by doctors and hospitals. Privacy laws prevented health officials from putting boots on the ground in Henry County and going door-to-door in search of detailed health histories of each home’s inhabitants. Still, the state, working with the available data and within recommendations established by the CDC, was able to come to what Adams believed to be a sound, if shocking, verdict: Henry County actually had fewer cases of glioblastoma than officials expected—below average and one of the lowest rates in the state.
Adams rattled off the numbers. Twenty-
six glio cases between 1999 and 2013 (the last year for complete data). The county accounted for just .8 percent of the 3,000 cases throughout Indiana during the same timeframe.
“To put that into perspective—”
“Bull crap,” someone interrupted.
Adams continued. Because of the concentration of glioblastoma in a common area, the state took the added steps of sharing the information with both the CDC and the Agency for Toxic Substances, both of which consulted protocol—which stated that there is no known environmental cause of glioblastoma—to determine Henry County’s glioblastoma cases. “One of the analogies we use is the breaking up of a pool table,” Adams explained. “Every time you break the balls, they spread out in a random fashion. But anyone who has played pool knows there’s gonna be some of the times when three balls are going to congregate close together, or four balls are going to congregate close together, or even five balls are going to congregate together.”
Adams’s department also consulted experts at Duke University and Indiana University. Researchers at the schools confirmed that, historically, there has never been an environmental cause traced to glioblastoma. Instead, the disease can be triggered by high-dose radiation—the kind used in cancer therapies. “Looking at the Henry County registry and the cases we’ve been able to talk to so far, we have not found any common cause,” said Adams, who nevertheless encouraged residents to report any additional incidents of glioblastoma to his team. But the soil and water tests Aundrea and her friends were advocating simply weren’t warranted, according to the experts.
“I want to finish by saying I am so, so, so sorry for the heartache of the families who have gone through this, are suffering. I’m sorry for anything from the state’s point of view that contributed to that, and it really all comes back to communication,” Adams continued. “And we need to do a better job of communicating both ways. And as your commissioner, I’m going to look at the whole process to make sure that we continue to improve communication on our part going forward.”
When Adams finished, Indiana State Epidemiologist Pam Pontones took the podium to discuss the specifics of how Indiana conducts cancer-cluster investigations. She said Raftery had looked through the cancer registry to check Aundrea’s list. And she reiterated that the state was unable to reach out to anyone personally.
A man in the audience with a walking cane and a round face raised his hand and then stood to address Adams.
“My name’s Bill Craig and from what I’m hearing, from what you’re saying, is your investigation so far has been based solely on statistics, rather than coming out and doing anything, physically investigating, because your experts in Washington said there’s no need to. That’s what I’m hearing. Is that correct?”
“Bill, that is a fair question,” Adams said. He reiterated the need for interviews, the complications of consent, and that the only known cause is high-dose radiation. “We’ve done everything and have gone above and beyond what the glioblastoma experts have told us we should do. And I know that doesn’t make you feel better if you’re suffering, or you’re scared, or if you’re living in a community where you’re worried about an exposure, but again, it’s the most honest answer I can give you. We’ve gone above and beyond.”
“I’ve lived on that street for 45 years,” Craig shot back. “Two cases at one end and then one case down around the corner. That worries me for this little boy sitting here,” he said, gesturing to a child.
Adams answered. “Internally, at the State Department of Health, we’ve gone back and forth and we said: Should we do more? Can we do more? And the question is, what do you do?”
“That doesn’t answer anything.”
Craig sat down.
The next day, several news stations ran a story with the headline “No cancer cluster in Henry County.”
In Indiana, there has never been a residential cancer-cluster investigation—of any type of cancer—that has proven any environmental link. And, in fact, according to Michael Goodman, a professor of epidemiology at Emory University, there has never been a link found in any residential cluster investigation done in the United States. In 2013, he and a research team analyzed the 428 investigation reports that were publicly available from the past 20 years. “The main finding was that, though people spend a lot of time and effort investigating cancer clusters, if the expectation is to find a cause of cancer, then this has not been a fruitful avenue,” says Goodman. People often point to well-known environmental disasters in places like Love Canal, in New York, or Hinkley, California (the Erin Brockovich incident). Though those were devastating ecological tragedies with real health consequences, they were not proven residential cancer clusters.
This lack of cancer-cluster cases is fairly common knowledge in the medical community, says Adams. And yet the state investigates three to 10 a year—and even has that form for reporting suspected cases. They also provide the packet of information about clusters, which mentions the widespread concern but does not mention the lack of findings.
Obviously, not every lay person understands the stats surrounding cancer clusters or the process for investigating them. The integrity of the state’s investigation was beyond reproach and went above what was required in some areas, reiterates Adams. But he does allow that there were communication errors. A departmental spokesperson, for example, mischaracterized the arc of the investigation to journalists, which gave rise to media reports that it was in its final stages.
And there was public misunderstanding about what constitutes an investigation and what counts as an interview. Any time someone contacts the state epidemiologist, it is called an “investigation.” Each investigation is different and may or may not include testing, depending on the known causes of a particular cancer. And from the state’s point of view, an interview is any time a community member talks to someone at the state, even if the conversation is a brief phone call. Community members were expecting state officials to walk around their properties and talk to them in person, trying to tease out possible connections. In the end, residents say what the state ultimately provided was temporary false hope.
Adams says the Henry County situation led him to reexamine the way the state communicates about cluster investigations. He has set up department meetings to talk through the steps, from how and when they contact families to the information available on their website. “From the science side, we’ve done everything right,” Adams says. “But people are afraid. We need to explain what a cancer-cluster investigation looks like and what they should expect in a timeline. We need to do a better job.”
Out of all the family members affected by glioblastoma in Henry County, Vickie Burke reacted most positively to the state’s proclamation. She appreciated that they apologized for the lack of communication. And once officials explained the reasoning, she understood why they hadn’t done any more testing. What would they even be looking for?
“It’s so obvious,” says one resident. “If you want something done, you’ve got to do it yourself.”
But she still thought there was a connection. Doctors had originally told her that one in 100,000 people were diagnosed. Then she heard three in 100,000. Henry County had 26 cases and needed more than 30 to be considered in excess. And yet those statistics didn’t take into account people who had moved from Henry County, those who had died of unknown brain cancers, or people diagnosed in the last several months.
She tried to be positive. Before Kyle died, he told her, “We aren’t going to be angry. We aren’t going to ask why. We’re just going to take this one day at a time.”
After he died, Vickie compiled all of the Facebook updates into 733 pages, bound in three books that she called “Team Kyle.” Sometimes she takes them out and flips through them to recall her last moments with her husband, and to remind herself about the kindness of her neighbors.
She plans to start a foundation to raise money for glioblastoma research. To promote it, she envisions sparking something like the Ice Bucket Challenge. Maybe, she thinks, people could do headstands on social media to raise awareness. “You know, headstands—brain,” she says. “And because the diagnosis turns your world upside down.” Her youngest son thinks the idea is silly, but York, the mayor, has volunteered to be the first to stand on his head.
Betsy Smith’s well was eventually tested with York’s anonymous funds. The test revealed that everything was fine—nothing in the water appeared to be harmful. But she and her family still don’t want to take any chances, so they continue to drink bottled water and eat only organic foods.
Burke Smith was disappointed in the investigation. He knew the chance of finding any environmental cause was unlikely, but he also wonders if the state has dropped the ball in other cases. “It’s so obvious,” he says. “If you want something done, you’ve got to do it yourself.” He has talked with others about looking into further testing and investigating. Mostly, he cherishes time with his wife. In the beginning of December, she had a difficult surgery. It seemed like he might lose her at one point, but she pulled through. For that, Burke feels lucky.
For Aundrea, the meeting was as she expected. “I knew they were going to do nothing,” she says. “It was nothing but smoke screens and perception management.” In the private meeting, Adams kept talking about his own family members with cancer. That didn’t comfort her.
She feels let down by York. Aundrea recalls that in the meeting with Adams, York worried that talking about how Henry County might be dangerous could hurt the business climate there. In particular, Aundrea remembers that the mayor mentioned a Boar’s Head factory possibly moving into the area and that an executive had even called him with concerns about the water rumors. “That told us right then and there that [York’s] trying to look like the good guy, but he did it because of the manufacturing plant, not the health of the community,” Aundrea says. York maintains his primary concern is public safety. But the mayor has confidence in the city’s water quality, and he plans to continue to lure new business.
Aundrea doesn’t think it will ever be possible for her to feel safe in Henry County. So moving on, for her, will be literal. After Christmas, she put her home on West Fair Oaks Road up for sale.
“I wish I had the answers, but I don’t,” Vickie says. “And I don’t think anyone has the answers. But was it just a coincidence? That they’re not linked? That’s a little too hard to swallow. I think we’ll always wonder.”
Locals still talk about the cancer cluster in grocery-store aisles, around breakfast tables, and when they greet each other in their cars on country roads. And yet their questions are largely the same as they were a few months ago: What do you think it is?
