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Jun 27, 2023

Considering the Personal Costs of PFAS Chemicals

Centering Stories in PFAS Regulation

 

“This collection of molecules affect every part of our world, regardless of where you live, regardless of what species you are,” says Heidi Guenther, a legal fellow at MCEA. 

Guenther made that powerful remark about a comment MCEA and Clean Water Action Minnesota recently submitted to the Environmental Protection Agency (EPA) on the federal agency’s proposal to establish new legally enforceable drinking water standards for six PFAS chemicals. These kinds of limits, along with the remediation of PFAS, are the next steps needed to control this chemical contamination that’s now found in every part of the world. The comment is intended to highlight the stories of the people whose lives have been permanently altered by these ubiquitous chemicals so that decision makers understand what’s really at stake. 

PFAS are called “forever-chemicals” because they never break down. They accumulate in water, plants, and bodies. Bio-accumulation in people is linked to many health risks, such as cancer, liver damage, decreased fertility, and increased risk of asthma and thyroid disease. Guenther, alongside MCEA Staff Attorney Jay Eidsness and Avonna Starck, the State Director of Clean Water Action MN, all know the next steps in the PFAS saga must center on how it affects people. 

“One of the big reasons we were able to find legislative success this session was unfortunately because a lot of young people, that had incredible bravery, got up in front of legislators and said, ‘I have all these health problems, and it's because of these chemicals that are in the water that I've been drinking my entire life’,” explains Eidsness. 

Legislation to limit and ban the use of PFAS in non-essential items is spreading across the nation. Minnesota was among the earliest adopters of a ban this past April, which is fitting, since we’re also the state where PFAS was invented. Starck is now being called to other states to advocate for similar laws. She recently testified in New Jersey, where the lack of people sharing their experiences left a palpable void. The facts and figures didn’t get at the true cost of the chemicals. 

“There were no human stories,” Starck says. “That gets skipped over a lot in our legislative work, but change happens when you start to feel.” 

It’s these feelings that MCEA and Clean Water Action MN staff wanted to deliver in our comment to the EPA. Knowing that the agency would be inundated with complex science, detailed analysis, and reams of data, they wanted to make sure that the people in charge of deciding what level of PFAS exposure is safe in our drinking water also knew the stories of the people whose lives had been irreparably harmed by these chemicals.  

 

 

The Real Cost of PFAS

 

The story of the Strande family will be forever linked to PFAS. Amara Strande, a young woman from Oakdale, Minn. died from a rare liver cancer called fibrolamellar carcinoma just before the law banning PFAS in non-essential products passed in the legislature. She was diagnosed after prolonged exposure to PFAS from an underground plume near where she lived. In tribute to her work and sacrifice, Minnesota’s new law carries her name. 

Strande did not advocate against PFAS tirelessly—she physically couldn’t because she was so often exhausted from her cancer and treatment—but she did advocate continuously throughout her illness, even when she could have been doing the things she enjoyed most, like making music or playing World of Warcraft. 

“Amara captivated everyone with her story, because that could have been any of us,” says Starck, who worked closely with the Strande family throughout the legislative process. “There's just no getting away from that. You can't avert your eyes, you can’t tune it out like when it's industry versus environmental advocates.” 

The story of Amara Strande, along with  her parents, Dana and Michael, and her sister Nora, isn’t an isolated story, but it’s come to represent the many stories of families who experience the emotional, physical, and financial toll that comes from loving and caring for people suffering health impacts from exposure to toxic chemicals. It’s a reminder that illness doesn’t just change the life of the person experiencing it, but also the lives of everyone who loves them, something the Strande family often says. 

MCEA and our partners’ comment to the EPA expresses how this experience reverberates throughout communities. 

“As we expand our knowledge of the harms of PFAS in our drinking water, we expand our fears. Parents, physicians, neighbors, siblings, all want change. They want action. They want their voices to be heard. And they want these stories to be a thing of the past, not a cautionary tale for the future,” Guenther explains. “It's not sufficient to rectify the harm if we're not ceasing the action that's leading to the harm.”

Although Guenther has heard the story of the Strande family many times while working at MCEA, it was still challenging to write about the experiences that they, and the many other people included in the comment, have gone through. 

“I felt a lot of exasperation that we're still having this conversation,” Guenther says. “We're still arguing about money when people's lives will never be the same because they drink water, this thing that is essential to life.” 

“We can look at this as a ledger if you want, but what is the cost of an 18-year-old dying from cancer?” asks Eidsness. “What is the cost of thousands of lives being radically transformed because of this? Can we put corporate profit on the other side and say it outweighs that?”

 

A Glimpse into the Future

 

The EPA’s proposed regulations for PFAS include three important changes  that MCEA and Clean Water Action support. The first two involve naming two PFAS substances as carcinogenic and establishing a Hazard Index to regulate four others, a tool the EPA has long used to understand the health risk of chemical mixtures. But the most important aspect of the proposal is that it concludes that the benefits of implementing the new rule outweigh the financial cost to make it happen. This is key, because the cost will be high. Personal stories help remind us of the costs already paid.

“Just because we've stopped putting more PFAS into the system doesn't change the fact that there's still a whole lot [already] there,” Starck says. “And people are still going to continue to get sick as long as they're exposed.” 

That’s why, although this recently passed  legislation will help turn off the tap on sources of PFAS, the work of removing it from our water still looms ahead. A larger conversation that’s beginning in light of this proposed rule is whether or not PFAS-manufacturers that had full knowledge of the effects of these chemicals for decades will face monetary liability. 

A recent MPCA study estimates removing PFAS from certain wastewater streams in Minnesota would cost between $14 and $28 billion over two decades. As necessary regulations are developed to protect people from these contaminants in their drinking water, it will be important to keep reminding regulatory bodies that these high costs don’t outweigh people’s health, and that they must be paid. 

“The more these conversations happen, the more of a push there is, whether that be locally or federally or through the court system, the more this momentum will continue and not fall to the wayside,” says Guenther.

Since submitting this proposed rule, the EPA has received thousands of comments from a wide-range of perspectives, from chemical coalition's and lobbyists, to private well owners and public waterworks and treatment centers. Eidsness hopes decisionmakers don’t lose sight of the real reason this rule change is necessary amid  the onslaught of numbers and technical information. 

“When we go up the ladders of government and decision making, it’s easy to lose perspective,” he explains. “The reason that we're doing this work is to protect people.”