BBC News, Washington DC
Theo WellingAfter Kim Visintine put her son to bed every night at a hospital in St Louis, Missouri, she spent her evening in the hospital’s library. She was determined to know how her boy had become seriously ill with a rare brain tumour at just a week old.
“Doctors were shocked,” she says. “We were told that his illness was one in a million. Other parents were learning to change diapers but I was learning how to change chemotherapy ports and IVs.”
Kim’s son Zack was diagnosed with a glioblastoma multiforme. It is a brain tumour that is very rare in children and is usually seen in adults over 45.
Zack had chemotherapy treatments but doctors said there was no hope of him ever recovering. He died at just six years old.
Years later, social media and community chatter made Kim start to think that her son was not an isolated case. Perhaps he was part of a bigger picture growing in their community surrounding Coldwater Creek.
In this part of the US, cancer fears have prompted locals to accuse officials of not doing enough to support those who may have been exposed to radiation due to the development of the atomic bomb in the 1940s.
A compensation programme that was designed to pay out to some Americans who contracted diseases after exposure to radiation expired last year – before it could be extended to the St Louis area.
This Radiation Exposure Compensation Act (Reca) provided one-time payouts to people who may have developed cancer or other diseases while living in areas where activities such as atomic weapons testing took place. It paid out $2.6bn (£2bn) to more than 41,000 claimants before coming to an end in 2024.
Among the areas covered were parts of New Mexico, where the world’s first test of a nuclear weapon took place in 1945. Research published in 2020 by the National Cancer Institute suggested that hundreds of cancers in the area would not have occurred without radiation exposure.
St Louis, meanwhile, was where uranium was refined and used to help create the atomic bomb as part of the Manhattan Project. After World War Two ended, the chemical was dumped near the creek and left uncovered, allowing waste to seep into the area.
Decades later, federal investigators acknowledged an increased cancer risk for some people who played in the creek as children, but added in their report: “The predicted increases in the number of cancer cases from exposures are small, and no method exists to link a particular cancer with this exposure.”
The clean-up of the creek is still ongoing and is not expected to finish until 2038.
A new bill has been put forward in the House, and Josh Hawley, a US senator representing Missouri, says he has raised the issue with President Donald Trump.
Theo WellingWhen Kim flicks through her school yearbook, she can identify those who have become sick and those who have since passed away. The numbers are startling.
“My husband didn’t grow up in this area, and he said to me, ‘Kim, this is not normal. It seems like we’re always talking about one of your friends passing away or going to a funeral’,” she says.
Just streets away from the creek, Karen Nickel grew up spending her days near the water picking berries, or in the nearby park playing baseball. Her brother would often try and catch fish in Coldwater Creek.
“I always tell people that we had just the fairytale childhood that you would expect in what you consider suburban America,” says Karen. “Big backyards, big families, children playing out together until the street lights came on at night.”
But years later, her carefree childhood now looks very different.
“Fifteen people from the street I grew up on have died from rare cancers,” she says. “We have neighbourhoods here where every house has been affected by some cancer or some illness. We have streets where you can’t just find a house where a family has not been affected by this.”
When Karen’s sister was just 11 years old, doctors discovered that her ovaries were covered in cysts. The same had happened to their neighbour when she was just nine. Karen’s six-year-old granddaughter was born with a mass on her right ovary.
Karen helped found Just Moms STL, a group that is dedicated to protecting the community from future exposures that could be linked to cancers – and which advocates for a clean-up of the area.
“We get messages every day from people that are suffering from illnesses and are questioning whether this is from exposure,” she says. “These are very aggressive illnesses that the community is getting, from cancers all the way to autoimmune diseases.”
Family handoutTeresa Rumfelt grew up just a street away from Karen and lived in her family home from 1979 until 2010. She remembers every one of her animals passing away from cancer and her neighbours getting ill from rare diseases.
Years later, her sister Via Von Banks was diagnosed with amyotrophic lateral sclerosis (ALS), a form of motor neurone disease. Some medical studies have suggested there could be a link between radiation and ALS, but this is not definitive – and more research needs to be done to firm it up.
That does not reassure people like Teresa who are concerned that more needs to be done to understand how locals are being affected.
“ALS took my sister at 50,” Teresa says. “I think it was the worst disease ever of mankind. When she was diagnosed in 2019, she’d just got her career going and her children were growing. She stayed positive through all of it.”
Like Hawley, Just STL Moms and other community members want the government’s compensation act to be expanded to include people within the St Louis area, despite the programme being in limbo after expiring.
Expanding it to the Coldwater Creek community would mean that locals could be offered compensation if they could prove they were harmed as a result of the Manhattan Project, during which the atomic bomb was developed with the help of uranium-processing in St Louis. It would also allow screenings and further study into illnesses other than cancer.
In a statement to the BBC, the US government’s Environmental Protection Agency (EPA) said it took concerns very seriously and had actively worked with federal, state and local partners – as well as community members – to understand their health concerns, and to ensure community members were not exposed to the Manhattan Project-era waste.
The BBC has also contacted the US Army Corps of Engineers, which is leading the clean-up – but has not received a response to a request for comment.
Getty Images“My sister would have loved to be part of the fight. She’d be the first to picket,” says Teresa of her efforts to get greater support from the government.
The trend in people around Coldwater Creek getting unwell has not gone unnoticed among healthcare professionals.
Dr Gautum Agarwal, a cancer surgeon at Mercy Hospital in St Louis, says he has not noticed a “statistical thing”, but notes that he has seen husbands and wives and their neighbours presenting cancers.
Now, he ensures that his patients are asked where they live and how close they are to Coldwater Creek.
“I tell them that there’s a potential that there’s a link. And if your neighbours or family live near there, we should get them screened more often. And maybe you should get your kids screened earlier.”
He hopes that over time more knowledge will be gained about the issue, and for a study into multi-cancer early detection tests to be introduced that could help catch any potential cancers, and help reassure people in the area.
Other experts take a different view of the risks. “There is a narrative that many people are sick from cancers, specifically from exposures while living next to Coldwater Creek for the last few decades”, says Roger Lewis, a professor in the environmental and occupations health department of St Louis University.
“But the data and studies don’t indicate that. They show that there is some risk but it’s small. It doesn’t mean that it’s not significant in some ways, but it’s very limited.”
Prof Lewis acknowledges the fear in the community, saying locals will feel safer if the government is clearer about its efforts to eliminate any hazards.
For many people near Coldwater Creek, conversation with authorities is not easing the angst that comes with living in an area known for the dumping of nuclear waste.
“It’s almost a given in our community that at some point we all expect to have some sort of cancer or illness,” says Kim Visintine. “There’s almost this apathy within our group that, well, it’s just a matter of time.”
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