New Yorkers heeded calls to return to normal after 9/11. Some fear that decision made them sick

Dana Nelson, 33, still can't visit the 9/11 museum in New York City. 

She was only 14 in 2001 when extremists highjacked four planes and attacked Manhattan's World Trade Center and the Pentagon, claiming the lives of almost 3,000 people. She heard the explosion when the first of two planes hit the twin towers shortly before 9 a.m. ET from her classroom window at Stuyvesant High School, just blocks away. 

Every year, on the anniversary, her husband spams her Facebook feed with cat videos, just so she doesn't accidentally come across the horrific images of the towers crumbling. 

She dreads talking about that day. 

But last December, something broke her silence: She was diagnosed with an aggressive form of breast cancer. 

"There was really no reason why at 33, I had cancer except for environmental reasons, and I think it was probably September 11th," she said.   

In the early years after 9/11, that claim might have been controversial. But, after two decades of advocacy and medical research, the U.S. government now recognizes the link between exposure to some 9/11 toxins and at least 70 different kinds of cancers and other illnesses.

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Exposure risk initially not recognized

The Centers for Disease Control and Prevention estimates that 400,000 first responders, workers and residents were exposed, through ingestion or skin absorption, to toxic pollutants in the dust and debris cloud from the collapse of the World Trade Center buildings, including carcinogens such as asbestos, benzene and soot, which contains various potentially cancer-causing compounds. 

At the time, authorities urged people to resume normal life and reassured Manhattan residents they would not be at risk from the smoke, dust and debris around Ground Zero, as the area where the towers collapsed came to be known. 

"The public in these areas are not being exposed to excessive levels of asbestos or other harmful substances," the head of the Environmental Protection Agency Christine Todd Whitman said a week after the attacks. 

In 2016, Whitman apologized for that statement saying she was acting on the best information at the time.

Nelson was one of those people who rushed back to the area in the days after the attacks, determined to return to normal life. Her high school still stands today at the same location on Chambers St. in Lower Manhattan.

Lawyer Michael Barasch represents Nelson and others like her. He calls those clients the forgotten victims of 9/11. 

"It's important to recognize that it's not just firefighters and cops," he said.

"There were 300,000 downtown office workers, 25,000 downtown residents and 50,000 students and teachers living, working and going to school south of Canal Street. And they were all exposed to the same toxins as the firefighters and cops. So, not surprisingly, they're coming down with the same illnesses." 

Many unaware of eligibility for support

In 2019, after an extensive and emotionally charged fight led by the comedian and popular talk show host Jon Stewart, the U.S. Congress agreed to a 70-year extension of the World Trade Center Health Program and the September 11th Victim Compensation Fund. 

The programs help people pay medical bills for illnesses suspected of being linked to exposure to the WTC site. The WTC Health Program is available to anyone who lives in the U.S. But the compensation fund can be accessed by anyone, including Canadians who were affected. 

While first responders have been supported by their unions in accessing the funds, Barasch says many civilians who are eligible don't even know about it. 

"The government let us down, and then they did the right thing. So, it's just heartbreaking to know how many people haven't taken advantage of it," he said. 

Nelson qualified for the program and now uses it to help pay for her expensive cancer treatment. 

She is just one advocate from her school on a mission to warn her former classmates that they could be at risk of getting sick and that they have access to support.

Another Stuyvesant graduate, Lila Nordstrom, founded the organization Stuy Health to help enrol people in the fund. This year, she published a book, Some Kids Left Behind, chronicling her battle to get financial support for herself and classmates who developed illnesses after being exposed to 9/11 toxins. 

"You didn't have to be digging through rubble for this to be something that's impacting your health," said Nelson. 

'Low-dose exposure' also potentially harmful

The potential links between toxic pollutants from that smouldering pile of debris and certain cancers, respiratory illnesses and other health problems have been documented over the years, but most of the focus has been on first responders who developed illnesses.

One study from Mount Sinai's Icahn School of Medicine looked at almost 30,000 police officers and recovery workers from the 9/11 site and found that the group had a statistically significant higher risk of getting cancer compared to the general population. It concluded that there's "evidence of increased risk for certain cancers among WTC-exposed responders."

Michael Crane, a professor of environmental medicine and public health at Mount Sinai Hospital in New York, agrees with Nelson that you didn't have to necessarily have direct contact with the debris at Ground Zero to be exposed to harmful substances. 

"Chronic low-dose exposure can also cause a lot of harm, and that was the story for many of the survivors," he said. "If I were a private doctor, I would tell them to get into that program and do whatever they tell you to do."

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Many civilian survivors of 9/11 - like office workers, tradespeople and people who worked in stores - felt forgotten.

Nelson was propelled into her activism after her cancer diagnosis, driven by a sense of duty to warn others about the risks they could still face, 20 years after being exposed to World Trade Center site. 

"Since I got sick at such a young age, I felt so strongly about making sure that anyone who was down here or spent time down here in the aftermath of Sept. 11 get screened checks," she said.

'People continue to get sick'

Barasch is on a similar mission. At the time of the attacks, his law firm was just blocks from the World Trade Center. He describes watching the tragedy unfold from his window. 

Like many others who lived and worked in the area, he returned to work even as the debris pile continued to smoulder. 

Barasch law firm is still located just blocks from the World Trade Center site. He couldn't have predicted back then that his practice would still be representing 9/11 victims 20 years later. 

"We did our duty. We went back to the offices. We kept our economy going, and we're paying a big price for it every single day because people continue to get sick and get diagnosed with these 9/11 cancers."

Barasch worries that, unlike first responders, most civilians who lived and worked near Ground Zero don't know they might be eligible for support if they develop an illness that can be linked to 9/11.

"9/11 didn't end on 9/11," he said. "I urge you: sign up for the free World Trade Center Health Program. Sign up for the victim compensation fund and access what you are entitled to."

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Twenty years later, CBC’s Ioanna Roumeliotis catches up with two Canadians affected by the Sept. 11 attacks. Ron DiFrancesco, who was among the last people to escape the towers, and Kimmy Chedel, whose husband Frank Doyle wasn’t so lucky.