'The word is scary.' Hyannis residents learning of prior PFAS exposure from blood tests

Greg Milne has a P.O. Box. Usually, he waits until he’s home to open the mail. But last month, he opened an envelope as soon as he climbed into the car.

Milne is one of hundreds of Hyannis residents who participated in a study funded by the Centers for Disease Control and Prevention probing the human health effects of exposure to PFAS, or per- and polyfluoroalkyl substances, in drinking water.

Milne, a Barnstable High School graduate who spent most of his life in Hyannis, wanted to know how much PFAS he had in his blood, and the answer was in the envelope.

PFAS, manmade chemicals designed to be nonstick, waterproof and stain- and flame-resistant, are still widely used in consumer products ranging from textiles to cookware, and the chemicals have entered the bloodstream of almost every American.

Betty Ludtke of Hyannisport with her children (from left) Nate, 17, Augusta, 11, Sophia, 11 and Anya, 14, in their kitchen on Wednesday. They were part of a PFAS health study that revealed the concentration of the chemical in their blood. Hyannis and Ayer are two Massachusetts municipalities where residents were exposed to high levels of PFAS in drinking water.

But, in addition to everyday products, Hyannis residents were exposed to a much more potent source of PFAS: drinking water contaminated by PFAS-laden firefighting foam from the former fire training academy.

Treatment of Hyannis drinking water to remove PFAS began in 2016, and the water meets safe drinking water standards set by Massachusetts in 2020, according to town officials. But before that, Hyannis residents drank the contaminated water delivered to their taps.

A 2014 test of one Hyannis well, Mary Dunn Well #2, showed PFAS concentrations of 430 nanograms per liter — the highest concentration recorded at any public water system in Massachusetts. The state's safe drinking water standard is 20 nanograms per liter.

How to get tested for PFAS: Want to learn more about your exposure to PFAS? Here are some resources for blood tests.

The result was also in the top 0.1% of samples taken nationwide during testing conducted from 2013 to 2015 under Environmental Protection Agency rules about unregulated contaminants, according to Laurel Schaider, lead researcher for the Hyannis health study and senior scientist at Silent Spring Institute. Samples taken from other Hyannis wells also fell within the top 1% nationwide, she said.

“That's why Hyannis was chosen to be part of the study,” Schaider said. “The CDC wanted to do the research in communities where there had been these higher exposures.”

‘Were those places using bottled water? Absolutely not.’

Milne knew about PFAS problems in Hyannis before opening the envelope, but he was still shaken to read that his blood test put him in the highest of three risk tiers outlined in guidance about PFAS and health outcomes from the National Academies of Sciences, Engineering & Medicine.

That guidance, issued in 2022, says that if the total concentration of seven PFAS chemicals in a person’s blood is 20 nanograms per milliliter or greater, their doctors should prioritize certain tests for high cholesterol, and depending on age and sex, conduct regular thyroid function testing, as well as regular checks for signs and symptoms of kidney and testicular cancer and ulcerative colitis.

Greg Milne of Hyannisport speaks at a March 2014 meeting in Hyannis.
Greg Milne of Hyannisport speaks at a March 2014 meeting in Hyannis.

Milne’s PFAS blood level was 20.7 nanograms per milliliter.

He described the results as upsetting. A Barnstable Town Councilor from 1999 to 2011, he was tapped into town news more than most residents in 2010, when Silent Spring researchers, including Schaider, published the first study documenting PFAS in Hyannis drinking water.

“I was in all those meetings and was asking questions all the time about specifics about the Hyannis water system, including this whole PFAS chapter, and I started backing away from using the tap at home,” Milne said.

But last year, when he took the survey given to study participants — a detailed questionnaire that Milne said would take a dedicated respondent around two hours to complete — something dawned on him.

“For many years, I was going to Dunkin Donuts in Hyannis when I was off to work or grabbing a coffee at Cumberland Farms in Hyannis, and of course, were those places using bottled water? Absolutely not,” Milne said. “From 2006 to 2016 they were using tap water. And 2006 to 2016 was when the PFAS was through the roof.”

‘I drank and drank and drank the water’

Barnstable Town Councilor Betty Ludtke said she doesn’t remember hearing anything about water quality warnings before PFAS treatment was added to Hyannis wells in 2016.

“Maybe I was too busy having four young kids,” said Ludtke, an American Airlines pilot who also served 30 years in the Air Force. “When you're busy raising your family and doing things, you're not as in tune with what's going on. So I drank and drank and drank the water.”

Ludtke said she first learned of the contamination in an ad seeking participants for the health study put out by Silent Spring Institute sometime in the fall of 2021.

“I called immediately,” she said.

She and her children visited the Hyannis research clinic, which closed in early December, to give blood samples.

Ludtke’s oldest child was born in 2006. Three others followed, all within the 2006 to 2016 exposure window being studied by researchers working on the Hyannis study.

“My son is now 17, I have a daughter who's going to be 14 here shortly, and then I have 11-year-old twins,” Ludtke said. “They were all right in the sweet spot.”

The Ludtkes' blood tests all put them in the middle tier of risk in the National Academies’ health guidance about PFAS exposure.

People who fall in the middle tier have a total blood concentration of seven PFAS chemicals between 2 and 20 nanograms per milliliter. The guidance says that physicians treating patients within this range should prioritize screening for high cholesterol and breast cancer. All prenatal visits for pregnancy should also include screening for hypertensive disorders, the guidance states.

Ludtke’s blood test showed a PFAS concentration of 15 nanograms per milliliter. Her children’s results ranged from 6 to 11 nanograms per milliliter.

“I was startled when one of my kids’ results was 11,” she said. “To me, for a kid, who at the time when she took the test was nine, that seems kinda high. What does 11 in a kid equate to as an adult?”

Ludtke and other residents have a slew of questions. There are just so many unknowns, she said.

“The word is scary,” she said. “You're scared. You try to do everything. I breastfed them, and it's like, ‘Oh my God, that's coming right out of me and I'm drinking the water.’"

Ludtke is now grateful for the time she spent away from Hyannis during her years in the military and piloting passenger planes.

“Perhaps that’s why my numbers aren’t as high as some of the folks I’m talking to,” she said.

As a woman, Ludtke — who lost a twin in utero during one pregnancy and needed three units of blood during what was later a difficult birth — also shed more PFAS through natural blood loss than a man would.

“In the general population, women do have lower levels of PFAS in their blood than men for just those two reasons,” Schaider said of menstruation and birth. “Unfortunately, we do pass it along to children in pregnancy, and PFAS can also be passed along during breastfeeding.”

PFAS blood levels drop when exposure stops

While PFAS don’t break down easily because of their strong chemical bonds, if exposure to PFAS stops, people do excrete the chemicals over time, according to Jane Hoppin, an environmental epidemiologist for North Carolina State University’s Department of Biological Sciences.

“They are forever in the environment, but they’re not forever in you,” said Hoppin, who is studying the health effects of PFAS in North Carolina communities exposed through drinking water from the Cape Fear River basin.

“In my study, when discharges to the river stopped, we saw levels coming down in individuals over time,” Hoppin said.

Community info session about PFAS study to be scheduled

Study participants were given information about how to speak directly with researchers about their individual results, but Schaider is also planning to host a community information session to answer questions in the next three to six months.

Data collected about Hyannis, one of several communities exposed to PFAS-tainted drinking water participating in the nationwide study, which is also being funded by the federal Agency for Toxic Substances and Disease Registry, is still being checked and analyzed by researchers, Schaider said.

When more of that work is done, research teams across study sites will be able to share some overall findings with participating communities, including how the levels of PFAS in residents’ blood compare to the national average, accounting for things such as age.

“It's a priority for us, once we have those results, to plan for a community presentation where we can share what we do know,” Schaider said.

“The findings may be that certain PFAS are higher in Hyannis residents than in the general population, and that's to be expected in communities that have had firefighting foam contamination of water supplies,” she added.

The broader goals of the study are to answer questions about which PFAS are associated with which types of harmful health effects, at which concentrations, and in which mixtures, Schaider said.

“For those types of analyses, we envision that the results from Hyannis and the other sites will be brought together, and that will provide us with more statistical power to look for a broader range of health effects,” she said. “So for the most part, the results won't focus just on Hyannis because with a smaller population, it's harder to see a statistical relationship.”

Information given to study participants cautions that blood tests cannot show that health problems are caused by PFAS.

“While some PFAS may increase the risk of certain diseases, your test results cannot tell you if an existing health problem is related to your PFAS exposure,” a letter that Schaider sent to participants states.

Residents will wonder nonetheless.

Milne said he pushed back for years against doctors’ assertions that his cholesterol problems were hereditary.

“My high cholesterol that I've been battling for the majority of my adult existence is from PFAS — period,” Milne said.

Hyannis falls short of participation goals for PFAS health study

Despite the help of residents including Ludtke, who knocked on doors with Schaider to recruit participants who met the study criteria, Hyannis fell short of study participation goals.

CDC gave the research team in Hyannis and Ayer, where residents were also exposed to PFAS, a joint participation goal of recruiting 1,000 adults and 300 children.

When the study ended, Silent Spring had completed questionnaires and blood draws for nearly 700 adults and nearly 100 children. About 400 adults and just over 40 children were from Hyannis, Schaider said.

A water filtration site used to remove PFAS chemicals from Hyannis drinking water, located on Mary Dunn Road, is  near the former Barnstable County Fire and Rescue Training Academy.
A water filtration site used to remove PFAS chemicals from Hyannis drinking water, located on Mary Dunn Road, is near the former Barnstable County Fire and Rescue Training Academy.

“All seven sites had a really challenging time recruiting children,” Schaider said. “As a parent, I totally understand the challenges of bringing a child in for a blood draw, so I think we did a really great job, especially considering that our two communities are fairly small.”

While the data gathered in Hyannis will be added to data collected from other communities in the national study, allowing researchers to draw conclusions from a bigger pool of information, missing the participation goal will affect research, Schaider said.

“In order to evaluate whether people with higher levels of PFAS in their blood are more likely to have a certain health outcome than people with lower levels, it helps to have more people in your study so that if you're seeing a difference and you have a high degree of confidence that that's not just by chance, but that it's a real association,” Schaider explained.

“So having a lower number than we hoped for might mean that we can't conduct every statistical test that we had hoped for, but we came pretty close overall for the whole study, and there's certainly still a lot that we will be able to learn,” she said.

Ludtke wishes the town had done more to inform residents of the opportunity to participate during the recruitment period, including approving a request to put notice of the study in water bills sent to Hyannis residents.

“The best cohort would absolutely be those people who pay the Hyannis water bills,” she said. “They finally said no, we can’t do that.”

Schaider confirmed the town attorney for Barnstable denied a request to include fliers alerting residents to the study in Hyannis water bills, but declined to comment further. Two phone messages left by the Times requesting an interview with the town attorney were not returned.

In 2022: New environmentally friendly Cape regional fire training facility slated for spring

'Somebody has to, and we should' volunteer for PFAS study

Ludtke fielded calls from residents who now want to participate in the study or get their kids tested.

One Hyannis father, still absorbing his own blood test results, is now weighing whether his daughters, age 10 and 13, should get blood tests.

He and his wife decided to participate in the study, which is no longer taking blood samples, not because they were worried about their exposure but because advocates, including Ludtke, convinced them that it was the right thing to do. He spoke to the Times on the condition his name not be used because of privacy concerns.

“It was more like, somebody has to, and we should,” he said. “People from the community had to take part. The bigger sample size, the better.”

The parents asked their daughters if they would participate, too, but couldn’t sell them on the blood draw. Their father now wonders if he and his wife should have been more adamant.

“They've lived in Hyannis their whole lives, school and everything,” he said.

In addition to giving participants the total concentration of the seven PFAS researchers tested their blood for, the concentration of each individual PFAS chemical was also noted in the results.

“I’m in the 95th percentile for one specific type of PFAS,” the father said.

He and his wife have lived in Hyannis since 2008, he said, and he remembered the town providing bottled water a few years later, around the time PFAS was first discovered in village wells. At the time, he didn’t know much more than the fact that the contamination was attributed to the county’s fire training academy.

For about two months, he’s not sure for exactly how long, he would drive to pick up cases of water from a distribution site off Camp Street every week.

“There had been boil orders and things like that on and off, but this was the first time when it was like, 'We're just giving out thousands of bottles of water,'” he said. “So it's like, OK, this is something serious.”

The family took steps to avoid drinking water from the tap, sticking mainly to bottled water, before eventually installing water filters at their home, though not because of PFAS. But, as it had been for Milne, the study questionnaire made him realize how many other ways the family had consumed tap water over the years.

He said it's difficult to know what to do with the knowledge he has PFAS in his blood.

“I have my annual physical coming up,” he said. “I'll probably share those results with her.”

Learn how to avoid PFAS, get health screenings

Cheryl Osimo, coordinator for Silent Spring’s community outreach efforts on Cape Cod and executive director of the Massachusetts Breast Cancer Coalition, has been raising awareness about environmental contamination in the area for decades, and she spent years recruiting residents for the PFAS health study.

For her, Silent Spring’s cutting-edge research in Hyannis, which has already armed residents with more information about PFAS exposure than they had before, as well as the dedication of town employees working on the PFAS problem here, ultimately inspire hope.

“It's OK to be concerned, it's OK to be worried and it's even OK to be afraid,” she said. “But we all have very good reasons to feel hope and we have to be able to find the courage to understand that it's important to get involved.”

“We have to be willing to learn about what it is we need to do to keep ourselves safe,” Osimo added.

Among those things, Schaider and Hoppin said, are reducing new exposure to PFAS, learning more about what exposure you might have already had, and following guidance about health care screenings based on that past exposure.

Otherwise, Hoppin said, people should keep living the lives they love on Cape Cod.

“Don't give up the things that are important to you, because what's in your body today is a marker of your past, not your future,” Hoppin said.

Jeannette Hinkle is an enterprise and investigative reporter for Cape Cod Times. Contact her at jhinkle@capecodonline.com.

The Cape Cod Times is providing this coverage for free as a public service. Please take a moment to support local journalism by subscribing.

This article originally appeared on Cape Cod Times: Blood tests in from Hyannis study of PFAS in drinking water 2006-2016