As chemical cleanup continues in East Palestine, Ohio, disease detectives work to understand why so many got sick

One Monday in early March, a team of 15 health specialists affiliated with the federal Agency for Toxic Substances and Disease Registry began knocking on doors along Taggart Street in East Palestine, Ohio.

The investigators were trying to contact residents and ask about any health problems they had experienced since a 150-car train derailed here February 3, spilling more than a million pounds of hazardous chemicals into the soil, water and air.

They had been in East Palestine and the surrounding area for a few weeks to collect survey responses. Taggart, one of their last assignments, is one of the closest residential streets to the Norfolk Southern rail line that cuts through the heart of town. It sits just a few feet from the site of the catastrophe that has upended life for the small town in northeastern Ohio. Many who live on Taggart saw the derailment and fire unfold just beyond their backyards.

Four months later, it is still the site of an active cleanup and some residents remain out of their homes, worried that it is unsafe to go back.

But at the time, the disaster was still fresh in the headlines. At a contentious town hall meeting days before the federal team visited, a Taggart resident rebuked government officials.

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"Not one of you have had the guts to come up there to see if we are OK with a flyer that they’ve given everybody on the other side of town," she shouted. "Nobody has come to us. Do I have to wait until I have cancer or my kids are sick or my grandkids are sick before you guys are gonna do anything?"

The next Monday, the ATSDR team, made up of doctors and epidemiologists serving in the Commissioned Corps of the US Public Health Service, fanned out along Taggart, going door-to-door to survey residents about their health. The Taggart survey had been planned before the town hall, according to a CDC spokesperson.

They started at 9:30 a.m. and worked without any protective equipment. About two hours later, two members of the survey team complained of throat irritation. Their supervisor offered to take them out of the field, but they wanted to keep working.

By 3 p.m., more reports of symptoms were coming in. The teams withdrew for the day and returned to their hotel, more than 30 miles away.

According to an incident report obtained by CNN through a Freedom of Information Act request, seven people had developed suspicious symptoms. All had sore or "scratchy" throats, three had headaches, one experienced burning in their nose, one felt nauseated, and another was coughing and had chest pain.

Although everyone was feeling better that evening, they decided to work from the hotel the next day to play it safe. The teams finished their work in the field a few days later and were sent home.

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The episode, which was first reported by CNN, drove home the contradiction that some East Palestine residents say they’ve lived for months: Official statements about contamination of the air and drinking water in East Palestine say there's no safety concern, but symptoms return for some residents when they come home for brief visits, especially among those whose homes are close to the crash site.

Perhaps more than any other agency responding to the disaster, the Agency for Toxic Substances and Disease Registry or ATSDR, a little-known division of the US Centers for Disease Control and Prevention, is poised to address questions that residents most want answered: Was I exposed to chemicals? And if so, what did they do to me?

But connecting the illnesses that people say they’ve had – headaches, rashes, sore throats, cough and burning, irritated eyes – to potential chemical exposures isn't an easy or straightforward task.

On Tuesday evening, they are expected to present the findings of their investigation to residents at a meeting at a local church, alongside county and state public health officials. It's the first chance residents will have to ask them questions.

Odds are stacked against clear answers. This was a chemical soup that was hard to test for and hard even to identify as a problem until after a symptom or health problem merges. The investigators’ task is to gather the precious data that may help crack the case – soon, or far off in the future.

A few days before some fell ill, the ATSDR team had assembled in the gravel parking lot at the Negley Volunteer Fire Department, the town south of East Palestine. The morning was chilly and breezy.

Dr. Dallas Shi and her partner, Ian Dunn, had dressed carefully for their work, and not just because of the nippy morning air.

Dunn says that before setting out into the field, they’d been briefed about the political leanings of residents here. This corner of Northeast Ohio is nearly all White and leans heavily Republican. Donald Trump won Columbiana County by 45 points over Joe Biden in the 2020 election.

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They were told that residents were likely to be distrustful of government officials, so were advised not to wear anything that had the CDC logo on it. Shi wore her navy blue and gold US Public Health Service uniform, as she usually does while working on a response.

On top of those uncertainties, people in East Palestine can be hard to contact. Many weren't in their homes when door-to-door efforts were underway, and four months later, some still haven't returned; they had no idea a health study was in the works. Others lack internet access that would have allowed them to take the survey online. Some have just tuned out anything to do with the derailment because they’re tired of hearing about it.

The disaster in East Palestine is particularly difficult to untangle. At least six hazardous substances were on the derailed cars. The chemical combinations may have had different effects than any single chemical alone. One chemical, vinyl chloride, was burned to get it off the train, and that may have created a slew of other issues.

The survey is called an ACE, an assessment of chemical exposure. Such studies are not common. They’re conducted only after large chemical releases. Since the ATSDR started the program in 2010, it has completed about one ACE every year.

Since the derailment, the ATSDR is doing three ACE studies: for residents in Ohio, for residents in Pennsylvania and for the first responders to the derailment, mainly volunteer firefighters.

In the weeks after the train derailment, CNN was given rare access to accompany one of the ATSDR teams on the ground in East Palestine to see how the ACE process works.

Shi, an occupational health physician, is a member of the CDC's Epidemic Intelligence Service, sometimes known as disease detectives.

Dunn, a geospatial health scientist, was a relatively new addition to the team.

"We don't usually have a mapping guy with us," Shi said as they climbed into their rental car along with Linda Naz, a member of the Negley Volunteer Fire Department.

When hazardous chemicals spill, a person's risk is determined by their exposure. Typically, the closer they are to the accident site and the more time they spend there, the higher their risk.

But it's not always as simple as that. Chemicals move when they’re spilled into water or carried by the wind. Determining where people may have been exposed can be tricky.

On the Ohio side, Dunn had a strong hunch that proximity to the local creeks, which were heavily contaminated after the derailment, could be important.

After mapping the addresses of people who had taken the nine-page ACE survey online or through a local health assessment clinic, the team realized they still had not heard from many residents who lived along Leslie Run, a stream that runs through East Palestine and snakes down State Route 170 into nearby Negley.

"What is in Leslie Run?" East Palestine resident Linda Murphy asked in early March at a town hall at the local high school. "How contaminated is our little stream, and how long until my well goes bad and my property is absolutely worthless? What is in Leslie Run?"

Shortly after the derailment, videos posted on social media showed dead fish floating in Leslie Run. A rainbow sheen rose to the surface when people disturbed the creek bed.

With all the uncertainty about the chemicals in the creeks, Shi and Dunn wanted to get a read on what people living near the creek were experiencing.

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They started the day about 1.5 miles from the derailment site, driving down State Route 170, pulling into each driveway on both sides of the street and sending the affable Naz to the door to introduce them.

Sometimes, dogs would run out to greet them. Once, they encountered a territorial pig that didn't seem to want to let them close to the house.

Some residents weren't home on a weekday. For those houses, they left a flyer with instructions for taking the ACE survey online.

Others declined to participate.

"I’ve had my fill of it," one woman told Naz of the increased attention on the town after the derailment. Naz told her that was fine and left her with a flyer.

Even with the flyers and the door-to-door effort, there's a good chance the teams missed people they wanted to talk to.

The next house was an example of why.

Dennis Shetler, 68, rents his small home, which is up on a hill across the highway from Leslie Run. When Naz offered him the option of taking the survey online, he told her he couldn't. He doesn't have a computer and isn't on the internet.

Large swaths of Ohio are digital deserts, lacking even basic internet access. In Columbiana County, 67% of the populated area and 28% of households don't have access to broadband internet, according to a recent government survey, and 348 out of 524 miles are unserved, lacking basic download speeds of 10 megabits per second and upload speeds of 1 megabits per second. By comparison, download speeds of 25 megabits per second and upload speeds of 3 megabits per second are about what would be needed to get on a video call.

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Some of that is because the area lacks the infrastructure to carry broadband internet, but in other cases, it's because people simply can't afford it, says Brian Bohnert, a senior public information officer for the state of Ohio.

On the day the ATSDR team visited, Shetler invited them inside the home where he lives with his 24-year-old daughter, Wendy, and his wife. The family has two dogs and four rabbits, including one that perched next to Shettler on a throw pillow while he answered the survey questions.

The team settled in. Shi asked the questions while Dunn logged the answers on an iPad.

Dunn showed Shetler a map of East Palestine with a circle indicating a one-mile radius around the derailment site and another showing two miles from that point.

Shi asked Shetler how much time he spent within one mile and two miles of the site between February 3 at 9 p.m. – the time of the derailment – and February 8, when residents were allowed to return to their homes.

"We were here the whole time," Shetler said, pointing to the location of his house, within the two-mile radius.

Shetler said the smoke came through the area after the train caught fire. They smelled it for a while.

Shi asked him to describe the smell and gave a list of options: Did it smell like gasoline, rotten eggs, paint, chemical smell, sweet, sewage, other?

Shetler told her it was a "plastic, painty smell," and moderately strong. They use a well for their water, so they’ve been drinking bottled water since the accident.

Shetler said he and his wife haven't had any symptoms. Wendy said her asthma acted up.

One of the state departments of health asked the ATSDR team to add questions about pets to their survey. Wendy said they covered the pets’ cages when the smoke blew through, and none of the animals had problems.

Next, the team headed to the other side of the street, closer to the creek, to a neat yellow house just a few hundred yards from Leslie Run. It belongs to Abby Hostetter, 59, and Marty Hostetter, 67 and an avid outdoorsman.

Dunn and Shi talked to them outside, in a gazebo Marty built overlooking a pond he stocked with fish. Abby brought throw blankets for visitors to ward off the chill.

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The edge of Leslie Run is just on the other side of the pond. Marty said he's in the creek all the time to hunt or fish, and he had seen the chemical sheen on the water. He watched for it when his boots churned up the silt at the bottom of the creek bed.

They didn't evacuate after the derailment, but they did leave when they heard that everyone within a mile was advised to go, about 2 p.m. on February 4.

When they came home a few days later, "we opened the back door, and it was so strong, it just knocked you out," Abby said.

"Everybody who comes here gets sick," she told Dunn and Shi.

Their 7-year-old grandson, who has cystic fibrosis, had recently come to spend the night. Abby says he coughed all night long and asked for an ice pack for his head.

Shi asked the Hostetters about the smell and went down the list of descriptions: gasoline, rotten eggs, paint, chemical smell, sweet, sewage.

Marty said it smelled like antifreeze, but sweeter. Abby said it smelled like spray paint to her. Walking into it gave them an instant sore throat, and they had both had headaches.

The Hostetters also have a well and had switched to bottled water for the time being because they’re so close to the creek.

"You don't even realize how much water you use until you get it all from bottles," Abby said.

Abby said they were worried about a patch of raspberries that their grandkids love to get into and eat. She mowed it up. Marty said he's not sure it's safe to fish in his pond or the creek, and he didn't feel like he can hunt for his treasured morel mushrooms in the months ahead.

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"Are we going to eat them this year, probably not," he said.

For them, this is worse than Covid-19, they said.

"When we had Covid, we could stay in our house and be safe. Now, we can't even stay in our house and be safe anymore," she said.

Their son, Jordan, and daughter-in-law, Brittany, live in a house on the same property. Their home didn't have the same overpowering odor when they came home after the evacuation, despite being a few hundred feet away. Marty thinks the difference is a chimney. His and Abby's house has one, but Jordan and Brittany's house does not. He believes that whatever caused the smell is something that got sucked into the house through the chimney.

Jordan and Brittany also took the ACE survey with Shi and Dunn. Abby entertained her grandson so they could focus on the questions.

Brittany said her asthma had been acting up since the spill, and she had to use her inhaler a lot more than usual. Jordan had a burning sore throat.

Dunn asked them about mental health symptoms and whether those have gotten worse.

"Yes," Brittany said, "because you don't know what to do." She's pregnant, and she's worried about their 7-year-old with cystic fibrosis.

Dunn asked whether they believed they were exposed to chemicals. Both said yes – in the water and in the air.

Shi and Dunn spent more than an hour at the Hostetters. They walked down to the creek. Marty used a stick to stir up the creek bottom, and a cloudy plume rose to the surface. He said people have been coming there to throw rocks off the bridge and watch for the chemicals to rise up.

Even as the study broke ground by using new methods to find and interview the people believed to be most exposed to the chemicals, it had its limits.

Some people who say they became extremely ill or who fear continuing chemical exposure after the derailment haven't returned to their homes.

There's no official count of residents in East Palestine who continue to be displaced. To learn more about their circumstances, CNN posted a question in a local Facebook group asking for more information. More than 30 residents have responded that they still aren't back in their homes, four months after the derailment.

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Jami Rae Wallace has spent the past two months moving from hotel to hotel with her husband, mother-in-law and 3-year-old. Her home in East Palestine is near Sulphur Run, a creek that was heavily contaminated by the spill. The water from the creek sometimes floods the basement of her house when it rains. She says that immediately after the derailment, she and her 3-year-old were coughing with runny noses and burning eyes.

Wallace said a toxicologist hired by Norfolk Southern told the family that they should leave and that the railroad would pay for it. She says they’re now at another temporary rental in Columbiana. When she comes into East Palestine, particularly since the beginning of work to remove contaminated soil under the tracks, she gets nauseated.

Wallace became concerned that no one seemed to be collecting health information on the symptoms residents were experiencing after the spill, so she started her own online survey so she would have data to share with lawmakers and government officials.

She didn't realize that the ATSDR was already doing essentially the same thing. Wallace said she completed a mental health survey for the Columbiana County Department of Health, but she never filled out the ATSDR survey because she didn't know about it. All the moving around has made it tough to keep up with developments related to the derailment.

So far, Wallace said, she's had about 50 responses, but she's only posted it online a couple of times. She's been organizing community meetings. During the next one, she would print it out and hand the survey out to people, she said, because she feels like her neighbors are more likely to respond to something they can hold in their hands.

"I’m gonna have it there for people to physically fill out. I feel like we get a lot more people to fill things out physically than online. It's just kind of the community we live in," she said.

Scott Meyer and his wife and seven children were living in a house that sits less than a 10th of a mile from the derailment site. When they returned home after the evacuation order lifted on February 8, "the chemical smells were just overwhelming." He said the kids coughed all night. Everyone had headaches.

He goes back from time to time to check on the house but said he can't stay for very long before his eyes burn, the headache comes back and he feels nauseated. His wife throws up.

"It was not somewhere we wanted to keep the kids or ourselves, so we ended up finding a place and getting out of there, and we haven't been back since," said Meyer, who said he didn't participate the ACE survey because he didn't know about it.

Instead of staying at home, they’re living in a two-bedroom ambulance station two and a half hours away in Mount Vernon, Ohio. Meyer is a firefighter, and he said he's able to live there because his employer allows it.

Asked whether they were worried about potentially missing some of the sickest residents – such as Wallace and Meyer – and whether that might bias the study results, the ATSDR team acknowledged that the survey will have limitations.

"No sampling strategy is perfect," Shi said. "And at the end of the day, we just try our best and hope to glean some useful information to better help the community."

By the end of their weeks in East Palestine, Shi and Dunn went out four times together: twice on the Pennsylvania side and twice on the Ohio side of the derailment.

They came home a few days after CNN joined them. Shi wouldn't comment on whether they were part of the group of seven ATSDR team members who got sick while doing fieldwork on March 6.

As of March 28, the ACE team had completed more than 1,000 surveys. About 700 were for residents and another 316 for the first responders to the derailment who were among the most exposed.

The ACE survey team presented its preliminary findings to the states in early April, according to a CDC spokesperson.

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According to the preliminary results, more than half of residents who responded said they experienced physical symptoms after the derailment. The most commonly reported were headache (76%), coughing (54%), fatigue (52%) and rash or skin irritation (50%). Sixty-two percent of people who responded also said they experienced increased anxiety after the crash.

Whether investigators will be able to pin those health effects to any particular chemical or chemical combination is still an open question.

Official test results from air, soil and drinking water have not turned up levels of any chemicals that would trigger health concerns.

While residents want answers, they aren't optimistic that any are coming anytime soon.

"I really truly believe this is gonna be a subject of research for years before we have a lot of answers," said Zsuzsa Gyenes, who evacuated East Palestine after the derailment and took the ACE survey online.

One affected group is getting special attention from investigators: the first responders to the scene.

Firefighters who responded showed up to battle a blaze with no information about the chemicals that were leaking and on fire all around them. They are believed to be at highest risk for health effects after the disaster.

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Steve Szekely imagines a day 10 or 15 years from now when he might be watching TV and see an ad for a personal injury attorney that ends with "if you were a first responder to the East Palestine train derailment and you’ve been diagnosed with cancer, call this number."

Szekely and his partner, Jared Musial, were two of more than 300 firefighters who responded the night the Norfolk Southern train skidded off the tracks and caught fire, sending a stew of toxic smoke and chemicals into the air, water and soil.

Szekely and Musial arrived on the scene of the fire shortly after 9 p.m. He says it looks like someone had opened the gates of hell, "because when you first arrived, all you saw was this fire going down the tracks. So as far as you could look to the left and as far as you can look to the right, it was there was just fire."

Szekely says they fought the fire for hours, chasing it down Sulphur Run, where the chemicals were burning on the water and setting nearby buildings on fire.

They didn't know what chemicals were burning, but they could smell them. Something ate through the glue on the heel of Musial's boot, leaving it flopping on his foot.

Musial was wearing an air pack, as Szekely calls it, a self-contained breathing apparatus that protects a firefighter's airways and lungs from smoke and chemicals.

But there were only two on the truck, and Szekely, who was manning the pumper, didn't want to use the other in case his partner needed it. Each pack only lasts about half an hour.

Szekely says the smell was strong, like nail polish remover but sweeter, and he could taste it in the back of his throat.

Fortunately, he says, he hasn't had any health problems related to whatever it was he was exposed to that night, but he knows that could change.

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"10 years from now, do I get lung cancer?" he said.

The firefighters who responded to the scene will be followed through the federally funded Firefighter Cancer Cohort Study.

The study, which is funded by the Federal Emergency Management Agency, aims to follow 10,000 firefighters for 30 years to learn more about how their exposures contribute to cancer risks.

He said they wouldn't find out until the next day what was on the train. He wishes the first responders would have gotten that information sooner, because it would have changed how they fought the fire.

"Knowing what I know now, we probably shouldn't have been nowhere near close to that fire," he said. "We should have we should have been at least a half mile away. And we should have used unmanned hose streams. Just squirting water and waiting until it burned. I mean, we probably shouldn't have been that close."