BURRILLVILLE, R.I. — Years before the state Legislature passed a law to set a new drinking water standards for per- and polyfluoroalkyl substances (PFAS), John Wheeler spoke out about how these chemicals had found their way into the water at his home in the town’s Oakland village. 

Wheeler, who was diagnosed with bladder cancer eight years ago, decided to go to the press after he learned about the PFAS contamination and several other family members were diagnosed with cancer and other diseases.

Now the state is taking action to reduce exposure to PFAS, which are found in firefighting foams, food packaging and waterproof clothing and are linked to several cancers, fertility issues, and developmental delays in children. The 2022 law will require extensive testing, likely temporarily shut down several water systems, and reduce PFAS exposures, but it only targets one side of a complicated issue, experts who spoke to ecoRI News said.

By July 1, 2023, all of Rhode Island’s public water supply systems will be tested for PFAS. If a supply tests higher than 20 parts per trillion (ppt) for one or a combination of the most dangerous PFAS contamination listed in the legislation, those suppliers will have to find a way to remove the PFAS from the water or find a new source, while providing potable water to customers and testing the supply quarterly. 

The state Department of Health and Brown University tested several public water systems in 2017 and 2019 that met Environmental Protection Agency (EPA) standards at the time but exceeded the new state maximum and may need remediation.

Despite a lack of state regulations, some water systems have already been taken offline, either because of an abundance of PFAS contamination or an abundance of caution.

In 2017, the Oakland Water District, where Wheeler’s water came from, tested at between 88 and 114 ppt of PFAS, higher than the 70 ppt that the EPA considered the safety threshold at the time.

About 175 people depended on water from the contaminated system, and all of them had to rely on bottled water handed out by the state to drink and cook with until most of the homes in the area were hooked up to Harrisville water, said Richard Nolan, then secretary, treasurer, and operator of the water district.

The project cost about $3 million, a huge sum for an organization with previous annual operational costs of less than $5,000, according to Nolan. The Rhode Island Infrastructure Bank covered the main costs of the project, but most individuals paid out of pocket to hook their homes up to the Harrisville system.

Oakland’s water quality results came as a surprise to Nolan; weeks before the results, Oakland had won a national award for the great taste of its drinking water. 

But it was firefighting foam from the Oakland Mapleville Fire Department, which sits a few hundred feet up the gradient from the community well, that did the Oakland Water District in, Nolan said.

“There’s probably other chemicals in the ground that nobody knows of,” Nolan said. “Someday, somebody will say, ‘Oh, this may be bad for you…’”

Wheeler’s family saw a string of bad health diagnoses before finding out that their water was contaminated. 

His daughter was diagnosed with thyroid cancer a few years ago, and his wife had had several nodules on her thyroid. Two of the family’s dogs, Sasha and Lakota, died from cancer. One of the pups had seen an improvement in her condition after starting to drink bottled water, according to Wheeler.

The last year has been tough, Wheeler said, sitting in his recliner in the living room where he spends a lot of time these days watching TV. This is his eighth year of on-and-off chemotherapy and experimental treatments for the bladder cancer that has now spread to a kidney. 

He drives to Dana Farber Cancer Institute in Boston for treatments every week but, he conceded, at this point the treatment is to prolong his life rather than cure his cancer.

Wheeler doesn’t know for sure whether the high level of PFAS in the water caused any of the illnesses his family’s seen, but he said, “If it didn’t cause it, it certainly didn’t help.”

But Wheeler doesn’t fault anyone at this point. “I won’t go through life blaming someone else,” he said.

He said he has a wonderful support system in his family and some of the other local families who were affected.

For a time, the Wheelers had thought about taking legal action, but ultimately not enough neighbors wanted to sign on, and a lawsuit didn’t seem like it was worth the hassle. 

He did push to get his $700 back for the hook-up to the new water system and pushed some of his neighbors to do the same. “That’s the least they could do,” he said.

Even after the switch, however, he said he still doesn’t drink tap water.

“Who knows what the hell we’re drinking,” another neighbor, who asked not to be named, said. She also switched over to the Harrisville system and was reimbursed for her plumbing fees at Wheeler’s urging.

She has also had health problems, and underwent surgery in 2021 for lung cancer, though she said she isn’t sure that the PFAS contamination alone was to blame.

“I’d like to be very mad about it, but what does that do?” she said.

It’s very difficult to prove that a PFAS contamination caused health issues in a community after the fact, Rainer Lohmann, a professor of oceanography at the University of Rhode Island and director of the research program STEEP: Sources, Transport, Exposure & Effects of PFAS, which was just awarded an $8.1 million federal grant to continue studying the issue.

“It’s tricky to find the causality,” Lohmann said. “That’s why it’s so frustrating for communities that are very small. Typically, we need really large numbers of people to show a correlation that is convincing enough that you can reach a settlement or a victory in courts.”

“We do a heck of a lot of things. A lot of places, we’re exposed to many different compounds throughout our lives,” he explained, so it can be hard to figure out where exactly an illness originated.

Despite the challenges of linking illness to contamination, there are effects of PFAS exposure that studies have been able to prove, including decreased vaccine effectiveness in children who had high levels of the chemical in their systems, something Lohmann finds particularly distressing while the world battles a pandemic.

Between the potential harms and multitude of exposures, PFAS are “really frustrating,” he said.

“Even me, as a scientist, I can’t go in the store and say, ‘I don’t want to buy this product’” because of its PFAS content, Lohmann said. “It’s not labeled. It’s not visible.” 

The EPA estimates that the PFAS in drinking water are only about 20 percent of a person’s exposure, Lohmann said, but that doesn’t mean it isn’t an important target.

“Drinking water is an obvious measurable, quantifiable, treatable exposure source that is important and, of course, some communities have way too high exposure,” he said. “So, it’s a very obvious target to go after.”

Even though drinking water can be the easiest place to find contamination, there are practical and financial challenges to testing the supplies to find PFAS.

Tim Cranston, the water director for North Kingstown, took one of his town’s wells offline in January 2021 after it tested relatively high for PFAS, before the state had a standard. 

“Testing high was certainly nothing like the Burrillville numbers that we saw, but one of our wells did test in the area that was borderline,” Cranston said. The water tested a little bit higher than the standards set in Massachusetts of 20 ppt, which he thought Rhode Island might adopt, he said.

Brown University researchers had been the first ones to test the North Kingstown well, but Cranston wanted to test again because the detection levels are so low, and PFAS are so pervasive, sampling contamination can happen easily. 

“What clothes the sampler is wearing, you know, what kind of a writing pen they’re using, all this stuff can impact your sample results inadvertently,” he said.

In further testing, the results toggled just above and below the Massachusetts standard, so to be safe, without a Rhode Island standard at the time, he decided to take the well out of service after consulting with the town.

Cranston sought an estimate for putting in a water treatment plant for the well, but learned it would cost $3 million to $5 million, plus the additional cost of maintaining it.

“That’s a lot to ask of your ratepayers to pick up that kind of extra money,” he said. “It has to be paid somewhere.”

Cranston said that North Kingston was in a good position to make the decision because the town had other water sources to draw from, but some other communities or water districts with few resources to pay for testing and mitigation might not be so lucky.

DOH spokesperson Annemarie Beardsworth said the department is already working with water systems to plan for testing that will comply with the state law and may use federal funding to pay for some of the initial sampling sent to the state lab.

Although the state lab will be performing PFAS testing, “acquisition of equipment has been impacted by supply chain issues. RIDOH is also working to recruit additional staffing resources to oversee the new requirements and provide technical assistance to the water,” according to Beardsworth.

Among the water systems that have tested and will likely continue to test above the 20 ppt standard for PFAS, which include several school systems in North Smithfield, Glocester, Exeter, Foster, Scituate, and the University of Rhode Island, some have already applied for federal infrastructure money to pay for large improvements.

“This is just the tip of the iceberg,” Cranston said. “As to how this plays out, not just in Rhode Island, but across the nation, there’s going to be costs.”’

Cranston said that he worried that he and others who operate water systems are working with a standard that is a moving target, saying he fears the 20 ppt standard could change in a few years.

Earlier this year, the EPA released information that indicated no amount of PFAS contamination is safe.

“Some negative health effects may occur with concentrations of PFOA or PFOS in water that are near zero and below EPA’s ability to detect at this time,” the EPA wrote in a health advisory in June without officially lowering the standard.

“Once EPA issues a final regulation on [PFAS], RIDOH would have to be at least at that same level,” Beardsworth wrote in an email to ecoRI News.

State Sen. Walter Felag, who represents Bristol, Tiverton and Warren and was one of the 2022 bill’s sponsors, said that it was important to get a standard established, even if it might change in the future.

“The important aspect is that we have something in place, and they have to comply,” Felag said. “Let’s see how it moves forward from there. I don’t want to jump ahead of myself, but I think it’s imperative that we establish some standards, and we try to live with it.”

Jed Thorp, Rhode Island director of Clean Water Action, said he viewed the initial standard as a sort of compromise.

“Any kind of pollution standard, whether it’s an air pollution standard, or a water pollution standard, is usually … kind of a compromise between what the science tells us is safe, and then what’s achievable with current control technology,” Thorp said. PFAS treatment is often an expensive reverse osmosis process and getting down to much less than 20 ppt is difficult, he said.

The new law also sets standards for PFAS in ground and surface water, which will be monitored by the state Department of Environmental Management. The Legislature also passed what Thorp called an “upstream” bill, which bans the sale and manufacturing of food packaging that contain PFAS in Rhode Island by 2024.

Preventing PFAS contamination in food and in the water systems after packaging has been discarded are important steps in reducing exposures, Thorp said.

“People don’t want to hear about it unless it affects them,” Wheeler said.

This story was funded by a grant by the EJMP Fund for Philanthropy to examine the intersection of the environment and public health.

Colleen Cronin is a Report for America corps member who writes about environmental issues in rural Rhode Island for ecoRI News.