At the former Pease Air Base in Portsmouth, scientists are resuming a pair of pioneering research studies on chemical contamination in drinking water. It could provide some of the best evidence to date of risks posed by the industrial compounds known as PFAS.
But despite more than a year of effort, organizers say they're having trouble recruiting enough families to join, which could hamper efforts to treat a growing public health crisis.
The PFAS contamination at Pease has been the focus of Andrea Amico's life since 2014. Her husband worked at Pease, and their two young kids were in day care there. They all drank water that exposed them to PFAS, which is linked to a lot of health problems.
"I can't even begin to describe to you what a horrible feeling that is -- like, something that happened to them as babies and toddlers could have lifelong impacts to them and to any future children they may have," Amico said. "And that just is such a terrible feeling as a mom."
Amico has testified about her family's experience to Congress and pushed for more response in countless meetings and protests. But for six years, she didn't tell her kids any more about what happened to them. All they knew was that their mom was a clean water advocate.
That changed last summer. Amico told her kids - now 7 and 10 - the full story before she enrolled them in the ongoing federal health study at Pease.
"I think kids can handle more than we think they can," she said. "Just such a huge relief that I can talk openly about it with them now. And they have both participated in the Pease study and [it] feels good that they know why they participated and what it's for."
This study is one of two that are now ramping back up at Pease after delays due to the pandemic. The one the Amicos joined is led by the Agency for Toxic Substances and Disease Registry under the Centers for Disease Control. It's a trial run for seven similar studies at PFAS-contaminated sites around the country.
Senior ATSDR epidemiologist and principal investigator Frank Bové said his study focuses on kids and adults who drank the water at Pease between 2004 and 2014. Click here to find out how to join the CDC study.
The study specifically targets:
- People over 18 who went to school or work at Pease between January 2004 and May 2014
- People over 18 who lived in Newington with a PFAS-contaminated private well anytime since January 2004
- Kids aged 4 to 17 who attended daycare at Pease between January 2004 and May 2014
- Kids who were born to or breastfed by someone who meets the adult criteria
Bové said the CDC will keep recruiting until they've tested about 1,000 adults and 350 kids. They reopened the study last fall but are currently less than halfway to that goal. Bové said they hope to have data from the study by the end of next year.
He said they especially want to hear from people who had blood tests with the state after the contamination first came to light in 2014 -- but that's not a requirement to participate.
"We need to find out if these exposures have serious consequences," Bové said. "And we already have some indication from the literature that they might. But again, there's enough uncertainty that it's worth doing these studies to determine that."
The study involves blood tests, a medical questionnaire and neurobehavioral tests for the kids, all with COVID-19 precautions in place. Bové said they hope to find clearer links between people's PFAS exposures and health effects they may have developed since, like ADHD in kids, autoimmune disease in adults, or high cholesterol and thyroid issues.
The other study at Pease is smaller, led by the nonprofit Silent Spring Institute. This study, which will also cover Hyannis, Massachusetts, looks at whether PFAS makes early childhood vaccines less effective.
Researcher scientist Laurel Schaider said she hopes to incorporate COVID-19 vaccines into her study, which is also resuming this spring after delays due to the pandemic.
"It does provide an opportunity for parents at Pease to contribute new scientific understanding about how these exposures -- even if they were in the past -- these exposures, over time, may have longer-lasting impacts on children's immune systems," Schaider said.
The Silent Spring study is looking for 60 kids, aged 4 to 6, who either drank contaminated water at Pease, or whose moms worked at Pease for at least a year before June 2014 -- meaning they likely drank contaminated water while they were pregnant or breastfeeding. Click here to find out how to join the Silent Spring study.
Neither study will follow families long-term. But they could help shape guidance for medical providers, and influence future federal regulations on PFAS. The Environmental Protection Agency is only now starting to consider any of those, and New Hampshire is in the minority of states with its own limits.
But the idea of joining any PFAS health study has still been scary for some affected families, who didn’t know how to bring the topic up with their kids. After the CDC study had its pre-pandemic launch in late 2019, Bové said, they brought in family psychologists to help navigate that trauma, and it seemed to work.
"I don't think that those are key issues anymore," he said. "I think the main problem is the pandemic. And again, I think there may be some fatigue on this issue in the community."
Portsmouth resident Celeste Ledoux hopes people power through that fatigue and join the research. Her kids were exposed to PFAS at Pease in day care. A few years later, one of her sons was treated for a brain tumor. There's limited evidence that PFAS may elevate some cancer risks. It's one reason Ledoux said, in an interview, that participating in the CDC study was an obvious priority.
"The truth is, none of us have answers," Ledoux said. "And contributing to the science to try to figure out what may have caused it - I don't know if it's the water, I don't know if I'll ever know if it's the water - but it's important to me that I contributed to finding out."
Plus, she said, the gift cards participants received didn't hurt.
Andrea Amico's family felt the same. Her 10-year-old daughter Sophia has gotten more interested in PFAS since her mom filled her in and took her to join the CDC study last year.
"Mom said the reason why she's doing all this is because she doesn't know what's going to happen to us," said Sophia Amico. "So that's why she's doing this study, because she wants to know what's going to happen and if there's any way to, like, cure it or fix it."
Sophia thought the study itself was actually pretty fun - the brain games, not so much the blood tests. As for when her mom told her she'd been exposed to the tainted water:
"It made me feel good because it felt like she wanted to keep me safe and I wanted to be safe and I don't want anything to happen to me," Sophia said.
She and her mom both hope that more participation in the research at Pease will help families like theirs feel more safe and healthy in the future.