Fighting Forever Chemicals

Ayesha Khan, co-founder of the Nantucket PFAS Action Group, isn’t a scientist — but she’s had some visceral personal experiences with the impact of forever chemicals in her own life, and has done enough research to fill a book.

When Ayesha’s husband Nate Barber, a longtime Nantucket firefighter, was diagnosed in 2019 with testicular cancer at the age of 38, Ayesha was terrified and overwhelmed. During the early stages of Nate’s treatment, peer-reviewed studies around perfluoroalkyl and polyfluoroalkyl substances (PFAS) were just being published. Some of the studies indicated that these dangerous chemicals were often used in high concentrations to create fireproof gear for firefighters, and fluorinated firefighting foam containing PFAS had been used to extinguish petroleum fires on Nantucket for decades.

While off-island undergoing one of his cancer treatments in 2020, Nate was watching television and happened to flip to one channel that would change his life. “It was one of those TV commercials where it was like ‘Are you a firefighter? Have you used firefighting foam? Do you have testicular cancer? You could be entitled to compensation.’ He couldn’t believe it; he answered yes to all those questions,” Ayesha said. When she and Nate first saw that commercial, the couple only had a vague idea of what PFAS was. The thought of firefighters being exposed to harmful chemicals had never crossed their minds.

When Nate joined the department 15 years ago, cancer wasn’t high on his list of concerns. Firefighters have a significantly increased risk of heart conditions — heart attacks and strokes are known as the main firefighter killers. But Ayesha began to ask around at the department if cancer was also a concern. “I asked another firefighter, Sean Mitchell, if he had heard anything,” Ayesha said. “He was so aware.” Mitchell told Ayesha a woman from Worcester had recently sent out an email blast to firefighters warning them about PFAS in the gear. She then began researching the toxic chemicals in her spare time. She also reached out to a friend from college, Jaime Honkawa, for some emotional support.

“I had relied on Jaime so much when I was coping with Nate’s diagnosis. She and I both started doing more digging, and the stuff we found online made me totally freak out,” Ayesha said. The two friends found studies from 3M and Dupont showing just how limited the existing scientific understanding was surrounding PFAS. Meanwhile, Nate was recounting all the times he had sprayed PFAS-containing firefighting foam around Nantucket. In July of 2020, one study released by University of Notre Dame professor Graham Peaslee showed that there were huge amounts of PFAS leaching from firefighting gear.

By this time, the Nantucket community had heard Nate’s story — friends, neighbors, coworkers, and total strangers reached out to Ayesha asking for more information. She and Jaime then worked together to compile all of their information into a document, and shared it with the community through a Facebook group. 

Firefighters’ unions across America are closely tied to big chemical companies that manufacture fireproof components for firefighting gear, Ayesha told me. At that time in early 2020, even those firefighters who were aware of PFAS were hesitant to speak openly about their concerns. But because the Nantucket community is so insulated and close-knit, Ayesha said, Nate’s friends, neighbors, and coworkers all supported him and his family. “We didn’t really care what the Professional Firefighters of Massachusetts or the International Association of Firefighters had to say — Nate and Sean threatened to leave the union unless something was done, and we were offering our fire department up as a research site for scientists to study the chemical impacts, which just wasn’t happening in other places,” Ayesha said.

Although the Nantucket community had Nate’s back as he advocated for PFAS transparency, with the ultimate goal of ridding the fire department of PFAS, he was still an active firefighter, and feared that he would lose his job and livelihood. The couple knew they had to seek legal advice from experts that knew how to support them in their advocacy work. This is when Ayesha and Jaime reached out to the Public Employees for Environmental Responsibility (PEER). PEER is a nonprofit organization that protects public employees who are fighting for a higher standard of environmental accountability within their agencies.

Kyla Bennett, director of science policy with PEER, connected with Nate and Ayesha and provided them with a legal framework that they could rely on as they progressed. 

“[Ayesha] told me her story, and when I realized that her husband was a public employee, I told her we could get him whistleblower protection while he advocated for PFAS-free gear in the department,” Bennett said. She added that the reason Nantucket was able to work through these issues and serve as an example to other communities is because the entire town supported Nate and Ayesha. “The entire island really cared about Nate and the rest of the firefighters, and they weren’t afraid to say ‘we have a problem here and we want to fix it.’”

The couple did everything they could to get information about PFAS out to Nantucketers, and before long, the topic was top of mind for many. 

Dr. Timothy Lepore, Nate and Ayesha’s longtime primary care physician, had been the one who discovered Nate’s cancer. Lepore wanted to get involved, and Michigan State University researcher and exposure scientist Courtney Carignan also got on board after she read online about the couple’s battle with PFAS.

Carignan introduced the group to the Toxic Use Reduction Institute at the University of Massachusetts, Lowell, who partnered with them to conduct an exposure study. “We did it in our own community, with our own firefighters. It was a joint study with Nantucket, Hyannis, and Fall River. To have researchers come here and have our own local people involved, it’s hard not to support that,” Ayesha said.

Once researchers arrived at the Nantucket fire station, they began evaluating legacy gear, current gear, and newly invented low-PFAS gear that was being tested. The assessment, which began in 2021 and built off the previous study by Peaslee, looked at exposure levels in firefighters to see if PFAS was leaching from the gear and being absorbed into the body. According to Ayesha, just three weeks after the research group announced the study, one of the gear manufacturers released a plan to make low-PFAS gear available to firefighters. “They saw the writing on the wall, they knew what this research would reveal, and they wanted to get ahead of the curve so they could make money in a newly emerging market,” Ayesha explained. “It was half financial incentive and half proactive damage control on their part.” 

Until recently, many of the scientific studies surrounding PFAS were conducted or funded by chemical manufacturers, Jaime Honkawa said.

“Our first real North Star was location and sharing out the most unbiased, independent information we could uncover,” she said. Jaime and Ayesha spoke with toxicologists, epidemiologists, and more to find out how government entities like the Environmental Protection Agency plan to deal with the spread of these toxic chemicals.

“My whole thought was that this information is constantly changing — let’s create a centralized website and a Facebook page so people can stay up-to-date and can connect with each other,” said Jaime, who specializes in marketing and communications. She continues to facilitate the Nantucket PFAS Action Group’s web presence and played a key role in broadcasting the group’s work to a larger online audience through social media. “At first it was all about Nantucket, but it soon became much bigger than that. We were highlighting the work of scientists who weren’t getting the attention they deserved, and soon enough we had a huge following of scientists and researchers,” Jaime said.

She said she's proud to watch how this group has developed, from a small initiative to support a local firefighter, to a group that’s making a national impact. “It started with trying to get PFAS out of the Nantucket fire service — now, four years after we started this journey, firefighters have the ability to purchase fully PFAS-free gear. This was only possible because so many people in the community advocated for change on so many different levels,” she said. Now, large turnout gear manufacturers offer fire departments PFAS-free gear nationwide. Nate’s cancer is now in remission, and the national PFAS conversation, particularly within fire departments, is more open than ever, Ayesha said. “But there’s still a lot of work to be done, and we certainly aren’t slowing down anytime soon.”