HOOSICK FALLS, N.Y. — Loreen Hackett would sometimes research the diseases she and members of her family encountered over the years, but the underlying reality never crystalized in her mind until PFOA was detected in the village's water system and hundreds of private wells.
That revelation was followed by more personally devastating information after blood samples were taken from those who'd been drinking contaminated water — sometimes for decades.
Hackett's blood level tested at 266 micrograms per liter, she said, compared to the estimated national median level for PFOA (perfluorooctanoic acid) of 2.08 micrograms per liter.
She said the resulting anger over what industrial chemicals in Hoosick Falls and around the nation have done to Americans like her has gone a long way toward keeping the clean-water advocate in constant motion — despite an array of debilitating medical conditions.
In addition to attending — in person or via the internet — agency and legislative hearings and conferences in the region, in Washington and sometimes further afield, Hackett three years ago launched and still consistently updates her Twitter page.
"When I started the page in June 2016, initially it was to call for state hearings, because they were still ignoring us at that point," she said. "I never expected to be doing it three years later."
Linked to PFOA
Like others in the Hoosick Falls area, Hackett has fought cancer and battled autoimmune conditions like arthritis. The totality of her medical issues forced her to leave the workforce — at the time believing there was some genetic factor affecting her extended family.
Long before PFOA was confirmed in the village water system in 2015, and before it was linked in the early 2000s through studies to several diseases and conditions, Hackett, 54, began to endure "thirty years of medical issues," she said.
"I had my first autoimmune disease when I was 21," she said. "My bones are falling apart. I am going in for [knee] surgery, by the way; I think it's my 15th operation ... I have lumps on my thyroid that need to be checked again — these are all things that we know are associated [with PFOA] ... You know, I can't even tell if it is better knowing or not knowing."
Hackett laughs — as she does often, sometimes with a sarcastic edge to it — while continuing with her shocking array of ailments.
"I had my ankle done, had a couple of toes screwed on since my joints are dying and collapsing," she said. "Both my hips are bad. And seven disks are out in my back because my bones are just crumbling. And throw in some breast cancer for s---s and giggles. Still testing negative for that and past five years."
But what fuels her anger and nonstop advocacy, Hackett said, is what she sees happening to her family and the families of other advocates from industrial sites around the nation now polluted with PFOA and other PFAS (per- and polyfluoroalkyl substances) chemicals.
Her PFOA blood level was 266 the first time it was tested, Hackett said. "Then we got my grandkids' [tests], and by that time I had been doing some research about diseases and issues. As I read health study after health study, some of the things that my family members are afflicted with — the light bulbs just went off."
Soon after, she said, "my daughter came down absolutely out of her mind with the kids [blood] levels. I was never so much concerned about me, but them and what they are going through, I am just absolutely livid. Livid."
She added, "My daughter has three kids. The baby, now one, was born with PFOA and already got diagnosed with thyroid disease at five months old."
The other children also have health issues associated with PFOA exposure, including migraines, sleep problems, low immunity and "unbelievable rashes" after bathing in PFOA-contaminated water.
"The red flags were just going off left and right," Hackett said.
PFOA has been associated through medical studies with skeletal issues, cardiovascular problems, testicular cancer, kidney cancer, thyroid cancer, high cholesterol and high blood pressure.
Not in it alone
Like others from the village, Hackett is quick to say she hasn't been alone in fighting for answers from polluters and government officials and for stronger environmental regulations.
"This is never, never a me thing; I don't like talking about me," she said of her advocacy efforts. "It's just been a scheduling thing. I'm disabled but usually healthy enough to get up and go (to events or hearings)."
Others heavily involved in traveling to meetings or conferences and giving public testimony or presentations include Michael Hickey, whose private water testing in 2014 revealed PFOA in the village system before any government-funded testing were scheduled; Emily Marpe, of Petersburgh, where similar contamination was found around an industrial plant; and Hoosick Falls Mayor Rob Allen, who has pressed for action on the pollution, having replaced a mayor and an administration that was accused of dragging its feet as the PFOA crisis unfolded.
Hackett said that being disabled she is able to spend more time on the issues surrounding PFAS chemicals, while the others have work schedules.
"We try to take turns," she said. "I've been able to travel more, but we all travel when we are asked."
At events, "A lot of what we learned here is what we talk about," she said. "For communities that are facing the same things And pushing advocacy. "This is nothing anyone should be quiet about."
Hackett has become recognized as a speaker and presenter who often relates the experiences of the Hoosick area in dealing with PFAS (per- and polyfluoroalkyl substances).
"We've had people say, you probably know more than those in government at this point," she said with a laugh. "We try to downplay that — what's an expert? We don't have any PhDs or science degrees."
The first trip Hackett took was to Merrimack, N.H., she said, "as we share common experience. That was about two years ago."
Merrimack is the site of a Saint-Gobain Performance Plastics facility. The company also currently owns two factories in Hoosick Falls that historically were associated with the use of PFAS chemicals, and for a time owned a former ChemFab Corp. plant in North Bennington, Vermont, considered a source of widespread PFOA contamination in that area.
Hoosick area residents have joined national PFAS Contamination Coalition, which involves 25 community groups dealing with PFAS issues in 15 states. Other groups that have worked with the local residents on programs or appearances include the Environmental Working Group, Earth Justice, the Center for Environmental Health and the Toxics Action Center.
A lack of action, or a slow response by state or local officials is a common refrain at PFAS pollution sites, she said.
"You know, once you find out — once you see all the agencies or elected officials that are supposed to protect you fail on such a miserable basis, it turned us all into community advocates ... for our families."
She adds, "We [in the Hoosick area] were one of the first to make national news on this, but then all the communities started popping out; every week there was a new one."
Every new community that discovered PFAS pollution, "I felt here goes another mom and dad frightened out of their minds," Hackett said, "and as I read the research information I couldn't not share it, because I knew how it felt, as a mother and a grandma, how devastating it was. If I can spread awareness to one more family, I feel like I have done a good thing."
She added, "That's what keeps me going; every doctor visit; every seizure of the baby; you know; what do you do to fight that? And I am proud that this community stood up and did that — the whole community .... You know, it's hard to get 300 people in Hoosick Falls to do anything."
"I don't think the state saw us coming," she said. "They just thought we were this sleepy little community and would roll over and not do a lot with the information."
"At least they are doing stuff now, but back then they had to be shamed, to publicly shamed across the United States to start doing what's considered the right thing. I'm glad that we were all part of that."
Hackett once worked with a woman from Alaska on a project and that led to her being invited to speak there earlier this year. Other events she and/or other area residents have attended involved, or will soon involve, trips to Boston, Tampa, Atlanta, Michigan and elsewhere.
She and other residents also have been involved in lobbying state and national lawmakers on drinking water safety and chemical regulation issues, including providing testimony or information to the New York Assembly and to congressional committees.
She praised U.S. Sen. Kirsten Gillibrand and U.S. Rep. Antonio Delgado for their work and cooperation with local residents on PFAS legislation and proposed regulation.
Hackett said she got involved as an advocate shortly before former EPA Regional Director Judith Enck pushed for the release of water test results revealing a high level of PFOA contamination in the village water system and advised residents not to drink the water.
Previously, village and state officials had not revealed the extent of the problem to area residents nor advised them not to drink the water.
"There were rumors, at least from the folks that knew, to stop drinking the water," Hackett said, so that after the EPA stepped in, "you realized how serious everything was. Then after that we had the blood testing. So you think, if they didn't think it was serious, they wouldn't test our blood at all. Everything just pointed to we really had to educate ourselves, because we weren't getting the information, except on our own."
Referring to her Twitter page, she said, "I still do it all the time, and sometimes it gets depressing. So I force myself to take off weekends and holidays. I need my brain reset sometimes. I literally force myself to take time off."
She posts nearly every study report, news article or press release she can find on PFAS.
One of her current issues is the use of newer, supposedly safer generations of PFOA, including at factories in Hoosick Falls.
"This still kills me; this rips me no end," Hackett said. "They just snowed on us for decades; so tell me how reasonable it is to not have any current air tests at these currently running factories until March of this year? And we haven't even gotten the results back yet. How is that possible?"
She added, "We know they are using substitutes (to PFOA), and we know that because it is in our blood tests in the second round [of blood testing]."
Hackett laughs, this time with a bitter edge. Then she smiles.
"You can take your misery and keep it to yourself or use it to fuel your anger," she said. "Each time something like this happens I was taken out of work at 35, never knowing I wasn't going to go back I don't dwell on my life as much. To look back sometimes, I have to stop myself; it gets frustrating. I lost so much of my life."
Hackett says she is determined to push ahead with her travel and advocacy schedule, and by now has perfected several "masks" to cover physical pain. But there are always new complications to deal with.
Shortly after this interview, she went to the hospital for minimally invasive arthroscopic knee surgery, but her blood and heart laboratory work "came back too concerning, so I have to see several more doctors to see if I can get cleared, which is going to take some time," she said in an email.
She doesn't seem to worry about the medical issues stopping her, but it is easy to see why others might worry.
Jim Therrien writes for New England Newspapers in Southern Vermont, including the Bennington Banner, Brattleboro Reformer and Manchester Journal. Twitter: @BB_therrien