Urszula Tanouye had no idea that she was breathing in toxic air pollution until a friend sent her a link to the Environmental Protection Agency’s (EPA) website showing her home was in a hotspot for cancer risk.

“It seemed like, within a couple of days, the whole village found out pretty much that way,” Tanouye said in a recent interview with The Hill.

She and her neighbors in Willowbrook, Ill., learned that it was home to a medical sterilization facility spewing toxic ethylene oxide into the air. 

Ethylene oxide, also known as EtO, is used in sterilization, including for medical devices and spices used for food seasoning.

It’s also a carcinogen, having been linked to white blood cell and breast cancer, according to the EPA. Animal studies have also linked it to brain cancer, according to the Centers for Disease Control and Prevention. 

The National Institute for Occupational Safety and Health says that people exposed to ethylene oxide may also have reproductive issues. 

Tanouye and other concerned community members got together with the goal of shutting down the plant, eventually forming a group called Stop Sterigenics — named for the company behind the plant in question. 

Tanouye said the organization of working parents shared a common goal but didn’t have a formal organizational structure. Instead, members utilized their specific talents: Tanouye has a master’s degree in microbiology, so she was able to understand and explain the science; fellow group member Steve Leopoldo was a political consultant who used his knowledge of and connections in state politics to help navigate that system.

“One of the things that was really unique about this group of people is that everyone brought a specialty that no one else had,” Leopoldo said.  

Eventually, they succeeded. In 2019, the Willowbrook facility shut down, though Sterigenics and other companies continue to operate EtO-emitting facilities around the country. 

Sterigenics said that it was closing the facility because of “inaccurate and unfounded claims” and “the unstable legislative and regulatory landscape in Illinois.”

In a new written statement to The Hill, the company said that its operations “did not pose a safety risk to the community.”

It also said that its facilities capture more than 99.9 percent of the EtO that it uses for sterilization. 

“We are outperforming the rigorous standards set by our regulators and we will continue to do so,” Sterigenics said. 

But the issue is broader than just one facility or company. 

Last year, the EPA said that communities near 23 sterilization plants around the country have elevated cancer risks. That list included cities such as Memphis, Tenn., and Laredo, Texas.

Asked why these plants were still in operation, an EPA spokesperson said that its authority to shut down facilities is limited. But, the spokesperson said, the agency is working with state authorities to reduce emissions while developing a new regulation.  

Tanouye says she sees what happened in her community as something of a test case for how the issue will play out in the coming years, adding her group was able to get a head start because of an EPA facility near the Sterigenics plant. She said local EPA workers asked the agency about their own safety, so they were able to get more information.

“We had data coming in before anybody in the public knew about the extent of the air pollution,” she said. “We had hard numbers before anything even started, and that’s something that other communities have to fight for.”

But the chemicals industry says the substance isn’t going away. The American Chemistry Council pointed to information listed on the EPA and Food and Drug Administration (FDA) websites, which says that EtO may be the only effective sterilizing agent for some medical devices. 

“Ethylene oxide is a critical building block chemistry for many applications we rely on,” the council said in a statement.

An FDA spokesperson told The Hill that while there are alternatives for treating dried herbs and spices, “these alternatives may not be viable for every spice,” spice form or blend.

The EPA is slated next month to propose a new rule, expected to be finalized in October, that could strengthen pollution limits for EtO.

In the meantime, activists in communities with active facilities, such as the Midwest Sterilization Corporation plant in Laredo, are still fighting for change. 

“Our goal is to reduce the outrageous amount of emissions coming from Midwest and … mimic policy that was passed in the state of Illinois that brought down emissions,” said Sheila Serna, climate science and policy director at the Rio Grande International Study Center. 

But laws that passed in Illinois may face tougher odds in Texas.  

“It’s a state that favors industry, plain and simple,” said Tricia Cortez, the study center’s executive director. “We’re at a disadvantage, but there are victories too, and I think that we can achieve that here.”

Midwest Sterilization told The Hill that it disagrees with its inclusion on the EPA’s list, saying that company modeling shows it shouldn’t be included. The firm also said it has been “working continuously to engineer and install new pieces of emissions control equipment even though we are meeting all current regulatory compliance requirements.”

The company expressed concerns about the forthcoming rule from EPA, saying that if it is “overly stringent,” it could “lead to cascading effect of cancelled or delayed medical procedures across the nation.”

Despite their relative head start, Willowbrook community members could have been warned even sooner. In the shorter term, a recent Inspector General report found that in 2018, a Trump official delayed the release of information to the community.  

A red flag had also been raised decades prior.

In 1984, the Illinois Environmental Protection Agency raised concern, saying that EtO emissions from the facility, at the time operated by a different company, “appear to be several magnitudes higher than desirable,” according to a letter that Tanouye shared with The Hill.

“The toxicity data provides evidence of human cancers of the pancreas, bladder, brain, central nervous system and stomach associated with ETO exposure,” it said. 

It’s not clear if there was any follow up. Kim Biggs, a spokesperson for the state environmental agency, said via email that the letter was sent by staff who are no longer with the agency and that “no additional documents were identified related to the letter that could verify a meeting occurred.”

Meanwhile, Tanouye said that her community has seen many cases of breast cancer and miscarriages. 

“We were surprised, always, that so many of our teachers in school adopted because they had so many fertility issues,” she said. 

She also said she looks back and wonders whether her mother-in-law’s brain tumor was related to the pollution. 

“She was in her mid 50s when she was diagnosed, and so she still had a bit of a career in front of her,” Tanouye said. “It was just really sudden that she was hit with this diagnosis and then within 18 months, it killed her.”

She said that seeing her community suffer, including watching friends experience miscarriages, has driven her activism. 

“Just growing up in this environment where the impacts were really felt, that community impact fuels this personally for me,” she said. 

Sterigenics in January settled more than 870 lawsuits related to its Willowbrook facility, agreeing to pay $408 million. The company still denies liability and “maintains that its Willowbrook operations did not pose a safety risk to the community.”

And while that specific facility is now closed, Tanouye keeps fighting. She said she has gotten involved in federal-level advocacy and also speaks to groups in other communities such as Laredo about organizing and advocacy strategies. 

“There’s a lot of research and energy and money going into cancer treatment. We’re trying to approach it from the other side, and prevent those cancers from happening in the first place,” she said.