Rockford, 1981: Residents who live on a small piece of land along the southeast side of the city have no idea their drinking water is contaminated.
Volatile organic compounds, or VOCs, are found in hundreds of municipal and private wells across the area. It would end up taking nine years of surveys and studies before the federal government would step in and switch nearly 550 homes over to clean water from the City of Rockford.
But after years of ingesting toxic chemicals, the health of more than 1,000 people became the government's primary concern. So in the early 1990s, residents who were exposed to one of the toxic chemicals, trichloroethylene (TCE), were added to a national registry to help track the potential health impacts of the contaminated water.
The study was scheduled to last 20 years, but it was never finished. It stopped less than two years short of its completion in 2010.
And the results from the first 18 years? They have never been released.
Today, the fight for that information continues.
"You know we lived here and drank the water. Can't they tell us what effects it had on our health?" Dawn Fisher
On the surface, Marshall Street looks like any other Rockford neighborhood. But it is what's under the surface that holds the real story. For 27 years, Dawn Fisher lived in what is now known as Rockford's Southeast Superfund Site.
The contaminated area is a 7.5 square mile chunk of land - north of Sandy Hollow, south of Broadway, just west of Mulford Road and east of the Rock River.
It was here where hundreds of wells were polluted with toxic chemicals after years of industrial dumping. That means for more than a decade Dawn, her husband and her children drank contaminated water.
"My children were very sick," Dawn says. "They were very sensitive, their skin was very sensitive."
Dawn believes the issues had to do with that contaminated water, water her kids drank and bathed in since the day they were born.
Eight years of ground water investigations by the Illinois Environmental Protection Agency finally led to action in 1989. Residents with high ground water contamination in their wells were given bottled water by the United States EPA as a temporary fix. That temporary fix led to a permanent solution two years later when the EPA hooked up nearly 550 homes to Rockford's municipal water system in 1991.
But that was not the end of this story. In fact, for many residents it is where it begins. And that ending is something they are still searching for.
After making the switch to the safe city water, Dawn and her family were approached by the Centers for Disease Control and Prevention. They wanted to know more about the health of her family.
"They asked me questions for myself and my children," Dawn says. They also questioned her husband, Mark. "They would ask you every kind of health question thinkable."
Dawn's family was asked to take part in a special study through the National Exposure Registry, called the TCE Sub-Registry. The water in the superfund site had dozens of dangerous chemicals in it. They included highly-toxic substances like vinyl chloride, lead and methyl chloroform.
But there was one chemical in particular the government was concerned about: trichloroethylene, or TCE.
And Dawn's family wasn't the only family they wanted to hear from.
"They were all health questions. 'Did I have any health experiences? Did I have any surgeries? How were my eyes, my hearing?' All that stuff." Sue Palumino
"Every few years, they would call and ask me a series of maybe 20 questions." Casey Kellems
"Just that we were in the superfund site, and they wanted to keep up with our health. And they would call once a year and just ask questions on your health." Sindy Goodman
In all, more than 1,000 people in Rockford were added to the TCE Sub-Registry.
So why was the government so focused on this chemical? According to the EPA, high amounts of TCE can potentially lead to major health problems, like miscarriages, liver and kidney damage, as well as damage to the immune and central nervous system.
Just how much TCE were the people in Rockford exposed to?
13 News poured over hundreds of pages of documents on the Rockford Superfund Site and here is what we found: when it comes to TCE, the EPA said the maximum amount allowed in drinking water was five parts per billion. The level found in some of the superfund wells was more than 427 parts per billion: 85 times the maximum contaminant level.
"I think the long duration of overly high levels of TCE is, without a question, concerning," says Troy Skwor, Rockford University Professor of Biology. "The levels that we saw in the documents were very high."
Skwor says one of the biggest concerns, and a major unknown, is the link between TCE and cancer.
"They start to suggest there are associations with cancers, especially kidney cancer, liver cancer. Autoimmune diseases," Skwor says.
"It scares me. It's really scary." Sindy Goodman
Sindy Goodman didn't know at the time how serious exposure to the chemicals was. "We drank it, we bathed in it. Played outside in the garden hose and drank out of the garden hose. Everything," she says.
Goodman hoped she would have more answers with the TCE study. That study started in 1990 and was supposed to gather health data for 20 years. But just two years before its conclusion, the study ended.
"It just stopped," Dawn Fisher says. "We didn't hear anything anymore."
The study ended and the data was never released.
The reason? Never explained, at least not to the people who took part in the study.
So 13 News went looking for those answers for them. We reached out to the CDC multiple times for an interview, but they denied all of those requests. They would only confirm the National Exposure Registry was suspended. When we asked them why, the answer wasn't clear.
Over the phone, the CDC said it was likely due to funding.
"That was a commitment that we made to be part of that study. And it was frustrating going through all of those questions, on each family member. And then what?" Goodman says.
The response from the CDC didn't sit well with U.S. Senator from Illinois Dick Durbin, who only found out the study was never completed when we told him about it earlier this year.
"This was a case that we were afraid many Rockford residents have been exposed to chemicals that can be harmful and that's the reason why they were being monitored over a long period of time," Sen. Durbin said. "It is absolutely unacceptable that at least the general findings, without the names of any individuals, at least the general findings be made public."
Following our interview with Senator Durbin, he sent out a letter to the CDC, demanding the results collected from residents be made public.
Several months later the CDC responded, saying: "The Board of Scientific Counselors indicated that the design and program operations of the sub-registries were no longer appropriate. In light of these findings and subsequent discussions, we discontinued the NER in late 2008."
In other words, the study wasn't scientifically sound enough to produce relevant results.
However, that is contradictory to a 2001 public health assessment from the Illinois Department of Public Health. It noted statistically significant increases in health issues like speech and hearing impairment in children, as well as elevated liver and kidney problems in women between ages 45 and 64.
It also said, "although the findings of the TCE sub-registry report do not identify a causal relationship between TCE exposure and adverse health effects, they do reinforce the need to continue ongoing follow-up of registrants."
But according to the CDC's letter to Senator Durbin, it did conduct analyses of all the sub-registry data in the National Exposure Registry. The problem is, that report was dated back in 1994, meaning 14 years of data collected from Rockford registrants is missing.
13 News filed a Freedom of Information Act request, asking for all the data the CDC collected on the Rockford residents. That request was denied, citing HIPAA privacy laws. We filed another request, asking for the information with the names and all other personal information redacted. But again, our request was denied.
So we went straight to the source and sat down with some of the people that took part in the registry and showed them how to file their own FOIA requests for their personal information. After months of waiting, none of them has received a response.
"You call down to Springfield and they say 'we'll have somebody contact you,' and nobody has contacted us," Sindy Goodman says.
Sue Palumino has had a similar experience. "I was told I would get a card in two weeks; I still don't have the card. And that's been over a month ago."
Today, still not much is known about the effect TCE has on health. But there has been a major change in the EPA's view of the chemical. Now it says no amount of TCE is acceptable in drinking water.
But Professor Skwor says even if the CDC did a comprehensive study of the data it collected on all the people in Rockford, it might not reveal anything ground breaking.
"We are constantly surrounded by chemicals, activities, that could put us at an increased risk for cancer," he says.
But we asked him: what if you found out you were drinking this water for 20 years, how would you feel? His answer?
"I would not want to be one of these people who was drinking well water and not aware of it."
Dawn Fisher, Sue Paulimino, Casey Kellems and Sindy Goodman all wish they were not among those people either. But since they can't change the past, their only wish now is for better answers about their future.
"It's my information, I should have access to it. Hopefully nothing will happen. I'd hate to think I'd get sick or cancer from contaminated water that I didn't know I was exposed to." Sindy Goodman
In total, 1,776 people were part of the TCE sub-registry. Since the CDC will not release their names, there is no way to track them down and check their health.
But 13 WREX will continue to press the government to release the data it collected in hopes of shedding some light on this topic and finding answers for the people in Rockford's Southeast Superfund Site.