Nearly seven years ago, two boys were diagnosed on the same day at the Medical University of South Carolina with identical rare brain tumors. They both lived in Mount Pleasant.
There were other children who had been diagnosed with cancer, too. Over the years, pediatric cancer cases seemed to be cropping up around town. It got people talking to each other on social media. And, in 2017, the online chatter captured a television reporter's attention.
"Eleven cases of rare tumors, most in three neighboring Mount Pleasant subdivisions," reporter Alex Heaton told viewers on Charleston ABC affiliate WCIV Channel 4. "Is it the water? ... Is it the air, or simply more awareness of rare brain diseases as the population grows?"
The three-minute segment aired June 26, 2017.
No one could have guessed it at the time, but the segment sparked a 38-day crisis that sent health experts and water-safety staff scrambling to manage a public relations mess.
The story quickly escalated from local TV to national news. Attorney Erin Brockovich, famously played by actress Julia Roberts 20 years ago in an Oscar-winning feature film, chimed in on the controversy.
“There are more unanswered questions about Mount Pleasant and Charleston, South Carolina’s water quality than there are answers,” Brockovich posted on Facebook two weeks after the first TV spot aired.
From the get-go, officials assured the public they should not worry. The water was clean and there was no cancer cluster in Mount Pleasant, the state health department repeatedly said. But that didn't stop parents from panicking about their children's health or real estate agents from fearing what might happen to home values in some of the Charleston area's most desirable neighborhoods.
"There was just lots and lots of misinformation," said Clay Duffie, general manager of Mount Pleasant Waterworks.
Duffie was fishing with a friend when he first heard about the TV story. An official from the S.C. Department of Health and Environmental Control called him on a boat.
"We’ve got a problem with accusations," Duffie remembered the DHEC official told him.
"I said, 'Yeah, I hear you,'" Duffie responded. "We initiated the crisis communications plan the very next day."
Unlike some public health statistics — such as flu deaths and hospitalizations which are reported on a weekly basis — cancer incidences and deaths take years to compile.
DHEC, which is responsible for making these numbers publicly available, still hasn't reported any information related to childhood cancer cases occurring from 2017 to 2019. But the data has been updated since the cancer cluster scare of 2017 and it shows there is no cause for concern in the Lowcountry. In fact, the number of childhood cancer cases in Charleston County has declined in recent years.
In 2004, 23 children in Charleston County were diagnosed with some type of cancer. By 2016, that number had fallen to 13.
"I was skeptical of (a cancer cluster) all along. I’m a data person. I wanted to see numbers that were proof," said Erin Benson, whose son, Sam Lee, was one of the two boys diagnosed with the same rare form of terminal brain cancer at MUSC. Sam died in 2016.
"When your kid is diagnosed with something that you’d never imagine, you absolutely need to blame something. There has to be a reason, right?" Benson said. "Looking for a villain is a super-normal human response. I’m glad that there is no villain in this case, at least as far as we know. I think that would be worse."
Heaton, who now works as an attorney, referred all questions about the 2017 report to Cathy Hobbs, WCIV's news director. Hobbs declined to comment.
Andrew Lawson is a distinguished professor of biostatistics at the Medical University of South Carolina and has spent his career studying cancer clusters in the United States and Europe.
He said "cluster alarms," like the one sounded in Mount Pleasant in 2017, are common.
"In fact, cluster alarms arise almost daily in California," he said.
The alarm raised in Mount Pleasant didn't meet the definition of a cluster for several reasons, he said. Many of the children under scrutiny had been diagnosed with different types of cancer. And it was likely that their families had moved into Mount Pleasant from other areas of the country, Lawson said.
"The Mount Pleasant area has a large amount of immigration," he said.
Cancer clusters do exist, he said, but they aren't always related to environmental sources.
"There are potentially a lot of different causes," he said. "Especially childhood brain cancer, it’s not very clear."
To actually prove that a cluster of cancer cases is linked to an environmental source, he said, public health officials must be able to establish that the patients were exposed to the source and they must identify the obvious "causative agent."
"It’s actually quite hard to prove, to definitely prove, a link to an environmental source," he said. "You might be strongly suspicious ... but it’s very difficult to prove it."
In the original TV segment, WCIV reported that DHEC was examining its cancer data but could not immediately provide answers.
Gary Schwitzer, who formerly ran the medical news unit at CNN, criticized the TV station for rushing to air the segment without more information from health officials. In 2005, he founded a website called Health News Review, which offers critical analysis of health care coverage in the media.
"You can’t rush to judgment and you can’t rush to publicizing without knowing the landscape, without knowing the science and without knowing what it might mean and what it might not mean," Schwitzer said. "Even if this (cancer cluster) was real, there was nothing in a 24- to 48-hour time frame that dictates the rush to broadcast before you can get state and federal agencies to weigh in."
On June 28, two days after the first TV segment aired, DHEC announced it had analyzed the data and determined no cancer cluster existed in Mount Pleasant.
"In our minds, that was good news, naturally," said Michael Saia, a spokesman for Charleston Water System. "We thought that might be the end of it."
'Fear first, facts second'
Water officials in Mount Pleasant and Charleston bore the brunt of public criticism during the crisis. Some residents, wanting to make sure their drinking water was safe, started buying test kits online and questioning water officials about the results. Those home-based tests fell short of industry-accepted standards, Saia said, and could not be considered reliable.
"It was one of the most challenging situations and, I got to say, one of the most rewarding situations. We learned a lot," said Duffie, of Mount Pleasant Waterworks.
Duffie's department issued press releases and held public meetings through the crisis. Likewise, Charleston Water System, which sells some of its water to Mount Pleasant, had to manage its message carefully.
"We knew our water was completely safe," said Kin Hill, CEO of the Charleston Water System. "We don’t just meet the regulatory requirements for our water, we exceed them."
Duffie estimated Mount Pleasant Waterworks spent about $106,000 during the crisis on overtime and extra water sampling costs. The department has since changed some of its practices in response to the alarm. It flushes school pipes after holidays, for example, to ensure that children are drinking clean, fresh water, Duffie said.
Saia, the spokesman for the Charleston Water System, estimated the department spent $60,000 on "unrequired" testing and has since implemented a new protocol to test the water for contaminants beyond those that are required by the Environmental Protection Agency. All of those results are published online. None of them exceed regulatory limits.
"We had some parents who were really genuinely concerned for their kids. We recognized the sensitivity in the whole situation," Saia said. But he criticized the initial TV report for causing undue alarm. "It seemed like it was fear first, facts second."
A spokeswoman for the state health department told The Post and Courier the 2017 cancer incidence data would be ready later this month.