In late August, a New Jersey woman named Marcy Borders became one of the 8 million individuals worldwide to die from cancer each year. Borders was best known for standing among the rubble after the World Trade Center collapsed on September 11, an image that eventually landed her the nickname “Dust Lady.” The mass of grey dust covering her body from head to toe—covering, even, the string of pearls around her neck—catapulted Borders to instant recognition.
It was also, just maybe, what ultimately killed her.
After the Twin Towers fell, a layer of dust and debris coated Manhattan. Hidden among that cloudy air, inhaled by survivors and first responders alike, were carcinogenic particles and chemicals—asbestos, fiberglass, mercury, and benzene, among others. The Natural Resources Defense Council estimates that 300 to 400 tons of asbestos fibers were used to construct the World Trade Center.
Still, just a week after the attack, the U.S. Environmental Protection Agency told the public there was no long-term danger to their health. “I am glad to reassure the people of New York and Washington, D.C., that their air is safe to breath[e],” EPA Administrator Christie Whitman said at the time. But then people began to fall ill.
In 2002, Dr. David Prezant of the New York City Fire Department, a pulmonary disease specialist, coined the term “World Trade Center cough” after 9/11 firefighters started to develop chronic respiratory illnesses. From 2001 to 2004, the federal government established a Victim Compensation Fund for all those physically harmed or killed as a result of the tragedy. In 2011, 10 years after the attacks, Congress reactivated the fund via the James Zadroga 9/11 Health and Compensation Act—named after an NYPD officer and first responder who died of respiratory disease—in addition to establishing a new World Trade Center Health Program. Two years later, officials finally added 50 different types of cancer to the list of diseases eligible for compensation.
The WTC Health Program is set to expire next month, and the Victim Compensation Fund is set to expire in October 2016, unless Congress decides to pledge more money. Not only would an end to funding mean an end to 9/11-related cancer treatment and compensation, but it would discontinue research as well—just as scientists and doctors are on the verge of finding a definitive empirical link between the incident and the illness.
The difficulty of finding a connection
In one of the most comprehensive studies of its kind to date, the New York City Health Department found no clear association between cancer and the debris at the World Trade Center site. The study, published in 2012 in the Journal of American Medical Association, observed 55,778 New York residents who were present at the World Trade Center on the day of the attacks and had enrolled in the World Trade Center Health Registry. Among those observed, 1,187 had been diagnosed with cancer by the time of the study. When comparing this number to all New York state residents, the study found an increased risk of prostate cancer, thyroid cancer, and myeloma, but ultimately could not connect the diagnoses to 9/11 due to a lack of statistical significance.
Still, the work did not rule out an association. “The presence of carcinogenic agents raises the possibility that exposure to the WTC environment could eventually lead to cancers,” the researchers wrote.
One of the study’s major caveats was it couldn’t account for the latency period of certain cancers—the time it takes for the illness to develop following exposure. According to the WTC Health Program, strains of cancer like thyroid cancer have about a 2.5-year minimum latency period. But a cancer like mesothelioma, whose main known cause is asbestos exposure, can have an 11-year minimum latency period before a patient starts exhibiting symptoms.
In all likelihood, this is a conservative estimate. It’s difficult to determine the latency period of mesothelioma due to a number of confounding factors, such as gender or intensity of exposure. But Mary Hessdorfer, executive director of the Mesothelioma Applied Research Foundation (where I am an unpaid volunteer), has known patients to go 20 or even 50 years without showing symptoms.
This long gap between onset and detection was the driving logic behind the initial decision to add cancer to the 9/11 Health and Compensation Act in June 2012. The person responsible for this recommendation, public health administrator Dr. John Howard, was appointed by George W. Bush as special coordinator for 9/11-related medical issues following the attacks. “You don’t want to wait 20 to 30 years to get a definitive answer,” Howard told The New York Times back in 2012.
As evidence mounts, compensation has lingered
Fourteen years after the attacks, researchers are closer than ever to arriving at that answer.
In 2013, Environmental Health Perspectives published a study that found more conclusive evidence of a link between cancer and 9/11. Of the 20,984 participants—all World Trade Center rescue and recovery workers—552 were diagnosed with cancer between 9/11 and December 2008. Those who had been highly exposed to carcinogens and pollutants were more likely to be diagnosed. In addition, the study’s authors were surprised to find higher levels of thyroid and prostate cancer than they had originally anticipated.
Dr. Raja Flores, chief of thoracic surgery at Mount Sinai Medical Center, one of seven sites affiliated with the WTC Health Program, insists that researchers are just scratching the surface with these findings. There’s no doubt in his mind that we will see a sharp increase in 9/11-related cancers over the next 30 years.
As of last year, there have been more than 2,500 reported cancer cases among World Trade Center rescuers and responders. These cancers span the full gamut—thyroid, prostate, lung, pancreatic, leukemia, multiple myeloma. The list goes on, though Flores thinks it wise to focus on the big three: esophageal cancer, lung cancer, and mesothelioma.
By 2014, the Victim Compensation Fund had awarded a sum of $50.5 million to a mere 115 cancer claimants (though case reviews are ongoing). Only 17 of the claimants were downtown New Yorkers, and five were visitors at the time of the attacks. While the lack of typical citizens among these claimants may point to their reduced exposure compared to first responders, it might also suggest a limited awareness by the victims themselves that they could have a health problem related to 9/11.
Then there are those like Marcy Borders. Last fall she told The Jersey Journal she suspected her stomach cancer was related to 9/11. But she also said she was struggling to pay her bills for chemotherapy treatment—suggesting that Borders might not have been awarded victim compensation during her lifetime, and that even if she did receive some, it clearly wasn’t enough.
Victim compensation funding is set to expire
Though much attention has been given to the firefighters and first responders afflicted with cancer, the claims of common citizens are more difficult to address. Despite being exposed to the same toxic chemicals and particles, these citizens are likely to be at a reduced risk, given that they did not work directly among the rubble following the attacks. But even New Yorkers who were peripherally exposed to the debris have cause for concern.
“I think we should identify anyone that could have potentially had some exposure down there,” Flores says. “I’d be curious to see what happens to the kids who went to high school down there. … How much were they exposed to it? When did they start school afterwards? Were their young lungs exposed at a time when you’re more likely to have an ill effect from a carcinogen?”
These distressing questions bear further scrutiny, and further screening. Unfortunately, says Flores, testing for 9/11-related cancers like mesothelioma or lung cancer is not as common as screening for respiratory illness or sinus or GI issues, which have more immediate symptoms. Moreover, for 9/11 survivors and first responders to qualify for coverage under the WTC Health Program, they must already have demonstrated symptoms. That puts potential 9/11-related cancer victims in a tragic bind: either they foot the bill themselves for early cancer detection (which is a critical component to survival), or hope they don’t develop symptoms 10, 20, or even 30 years down the line.
As funding for the program reaches its expiration date, many lawmakers are pushing for extended, long-term compensation for victims. This April a number of federal lawmakers called for a permanent reauthorization of the James Zadroga Act. Despite reluctance by some members of Congress to fund the reauthorization, which will cost around $400 million annually, Senator Kirsten Gillibrand told Jon Stewart in July that she expects a vote sometime around September 11. Both Gillibrand and Stewart are passionate supporters of the act, with Stewart calling any resistance to it “the most galling example of a legislature removed from the purpose of their job.”
But while the government can vote to extend compensation, its willingness to channel more money toward early cancer detection is likely contingent on researchers confirming a link to 9/11. In the end, New Yorkers exposed to the World Trade Center debris are faced with an awful predicament: Only time will tell if certain cancers manifest as a result of 9/11, but if there is indeed a link, time for these survivors to catch their cancer early is running out.
Marcy Borders is a fitting example of a cancer patient whose fate came too quickly, but the unfortunate reality is that Borders may be an exception. The real mass of 9/11-related cancer deaths is probably yet to come.
[Aria Bendix is an editorial fellow at CityLab @ariabendix.]