The investigation got off to a bad start by focusing almost exclusively on a single contaminant: asbestos. Previous incidents, notably the Con Ed explosion in Chelsea, had made people more wary of the dangers of asbestos, and critics such as Joel Kupferman and Juan Gonzalez demonized it, undoubtedly increasing the worries of New Yorkers. Although no amount of asbestos is considered safe, the near-exclusive focus on it as an indicator of risk was misdirected because other hazards that proved far more pervasive, such as the dust’s caustic nature, were ignored or overlooked. Authorities reported that asbestos had not exceeded standards, but they said little about the dangers of the dust itself.
The EPA says that the information about the alkalinity of the dust would not have changed its response in any way. But industrial hygienists believe that if the information had been made public earlier, it could have forced authorities to determine exactly how far the dust had traveled and the extent to which it had managed to contaminate interior spaces. And that information, in turn, would have made a proper cleanup of indoor spaces imperative. Instead, the arbitrary boundaries that the city and the EPA set led to the ultimately futile voluntary cleanup. And that imperfect response was followed by the technical panel and its aborted effort to bring peace of mind to New York.
Finally, the federal government missed an opportunity to consolidate the hard work and good science that had been done till then by not reappointing John Howard when his term ended in mid-2008. The outgoing Bush administration, clearly tired of Howard’s advocacy and the growing burden of the health programs that he helped put into place, sacked him, despite fierce lobbying by New York’s congressional delegation. Thus, as happened with the EPA technical panel, the federal government seemed to throw up its hands, declare victory, and walk away from the problem.
Without Howard at the helm, the program drifted for about a year. But then in September 2009, nine months after the inauguration of Barack Obama, Dr. Thomas Frieden, New York’s post-9/11 commissioner of health, took charge of the Centers for Disease Control and Prevention. Frieden reappointed Howard national coordinator for 9/11 health issues, reviving hope in the long-term future of the monitoring and treatment program, and providing what many wished would be an additional push for passage of the Zadroga bill.
Endnotes
1 Personal interview, 5 August 2009.
2After Action Report on the Response to the September 11 Attack on the Pentagon, prepared for Arlington County by Titan Systems Corp. Available at www.arlingtonva.us/departments/Fire/Documents/after_report.pdf.
3 Lombardi, Frank and Michele Mcphee, “Bravest vs. Finest in WTC Melee,” New York Daily News, 3 November 2001, p. 3.
15. Afterclap
When the voices of the doomsayers who predicted an environmental holocaust matched the rhetoric of the deniers who were unwilling to acknowledge any serious illnesses linked to the dust, the city and large parts of the nation were unable to come to any conclusions about what had truly happened at ground zero. New York’s government turned schizophrenic, fighting against the sick responders in federal court even as it begged Washington to fund screening, monitoring, and treatment programs for them. Complex litigation dragged on for years, even as more people fell ill and died. Scientists and medical experts were pushed beyond the limits of their expertise as they were badgered to prove a link between dust and disease that could not be proved—not yet. Then they were denounced for giving incomplete answers to those questions.
Ground zero was contaminated not only by dust, but by a cascade of errors—some well meaning and unavoidable, others driven by arrogance or neglect. Those misjudgments broke down the trust that existed by mutual consent between government and its people and set the stage for a confrontation between perception and truth that dragged on long after the towers came apart. Not just the environment had been poisoned. The dust seemed toxic for the relationship of officials to those who elected them, for the trust between science and the public, for the integrity of the news media, and for the power of the courts to deliver justice. This breakdown could be seen as an artifact of that particular moment in history, a distortion of reason that seemed to parallel the growing distrust in an administration that had started a war on what turned out to be a false pretense and then declared victory when there was none to be had. Or it could be a testament to the passing of the age of belief.
As public trust faltered, people on both sides of the ground zero health divide began to doubt each other, which then led them to exaggerate as they tried making points above the din. This process is not limited to ground zero, but is a reflection of the way much public debate now occurs: The truth gets mangled in the attempt to convince or persuade. Exaggeration about the dust provoked even more confusion and less understanding. Hubris, political correctness, and turf battles for influence and the high moral ground all contributed to the fog. It became almost impossible to say anything about ground zero and its impact on health that was not tainted by rancor or fear.
As each anniversary of the attacks came and went, the city remained deeply divided. Some of those who were sick did not receive the help they needed, while some who were not sick stood to get help they didn’t deserve. And questions lingered about whether we had learned anything from the tragic experience of ground zero that would prepare us for the next time we would be forced to respond to an unimagined disaster.
The recovery operation at ground zero was by no means a failure. It was a tragic success, a delicate balancing act involving different, and sometimes conflicting, interests. Just as thousands of workers cleared away the 1.5 million tons of twisted steel and concrete in record time to reveal the bedrock foundation of the twin towers, their struggle with disease and doubt in the aftermath of 9/11 exposed contradictions in the nation’s approach to acceptable levels of risk. At its most basic, this was a story of managing risks and calibrating expectations.
If epidemiologists do their jobs well, the raw numbers contained in their studies can begin to reveal the parameters of a large tragedy, the outlines of a looming health crisis or the roots of a medical false alarm. In the wake of 9/11, data helped shape the response of public health agencies and created a degree of public understanding and sympathy—though not always. As the studies mounted along with the years, epidemiologists presented a clearer image of the real respiratory damage that had been done to those who had been exposed to the initial plumes of contaminated dust. They also suggested that some of the most acute initial aftereffects could turn out to last, as once was predicted, “for the rest of their lives.”
But we faced severe limits on what we could know and how we could learn it. Most of the data had been derived from clinical studies, such as those done at Mount Sinai and the fire department. Little in the way of laboratory research, with sample doses and control groups, had been conducted. Replicating the dangerous conditions that had existed in the first days after the attacks would have required knowledge of what was in the smoke and gasses that had covered the pile then. But such measurements had not been taken. Besides, the funds simply weren’t available to support that kind of research in any significant way. Dr. John Howard recognized this fault long ago and planned to address it once the funding for monitoring and treatment was secured. But after the Bush administration shifted from apathy to outright resistance following Howard’s proposal in late 2007 for a service contract that would have institutionalized the responder health program, the idea went nowhere. Howard fought hard to keep the research going. He feared that if momentum were lost and the cohort of responders in the various programs dispersed, “we’d lose the science and we’d never know how the population was affected.” In that case, Howard predicted, “the ultimate victory would go to those who do not want science to come out of this.”
Laboratory studies would have supported the raw numbers, but they would not have captured the entirety of the suffering that continued long after 9/11. It is important not to lose sight of the individual lives that were darkened by the dust�
��or the hardships that people like Marty Fullam and his family will have to face for the rest of their lives. His combination of pulmonary fibrosis and polymyositis might turn out to be too specialized to be included in any study, a rarity that would not show up in any statistically significant way even in a sample of 60,000. Yet it is more than real every single day at Fullam’s Staten Island home.
The aftermath of the collapse of the twin towers underscored the limits of what epidemiology can do. Given enough time, the studies could provide a reasonable degree of medical certainty. But Fullam and so many others simply did not have that much time to wait. For them, “We won’t know for 30 years” simply was not an acceptable response, though it may, in fact, have been accurate. Neither would the benchmark cases selected by lawyers and the court have provided definitive answers about the real level of risk the responders faced. Instead, their outcomes would be a reflection of legal strategy and public perception, regardless of the science.
Most of the researchers working on the 9/11 impact were medical doctors, and most personally saw the patients who constituted the data in their studies. For some, it became impossible to separate individuals from gross numbers, or to forget how the needs of some might not reflect the reality of many. As scientists, they strived for the most significant results, coming as close as they could to showing, with a high degree of certainty, the connection between cause and effect. But even then, the elusive 95 percent confidence interval that researchers strive for is recognition of the absolute limitations of dealing with the intricacies of the human body. Nothing is black-and-white. But when it comes to environmental triggers and the emergence of future diseases, can society afford to wait for absolute certainty?
“Hardly anything anyone does is 100 percent certain,” Dr. David Prezant told me once, in a long conversation about the interaction of science and advocacy. “How about nothing that anybody does is 100 hundred percent certain.”
In the end, all of them—from Prezant and Paul Lioy to Charles Hirsch, David Worby, Paul Napoli, and James Tyrrell, along with the thousands who are worried about their futures because they once breathed the dust—were looking for certainty. It became clear that there are different standards of certainty, depending on who is trying to find it and where. Medicine has one definition; science and the courts have others.
What they all sought—evidence that a definitive scientific link between dust and disease either exists or does not—is the ultimate proof, but it may not have been a realistic expectation for dealing with an environmental and health catastrophe like ground zero. Even the most convincing study, done to the most exacting standards, could highlight increased risk but would be inadequate to prove that one individual contracted a specific disease after exposure to a particular toxin.
As our storehouse of useful chemicals has grown, we have been forced repeatedly to weigh their benefits against the increased risk and uncertainty they carry. Our industrial past holds many tragic examples of how difficult it is to provide justice after the damage has been done. One case, in particular, involving nuclear workers in upstate New York, casts an eerie shadow over ground zero. We now know that workers’ labor with radioactive material for the Manhattan Project during World War II, and later simply working in the same contaminated buildings, sowed the seeds of many illnesses. It took half a century, until 2000, for the federal government to acknowledge its guilt in exposing the workers to excessive radiation without either warning them or offering adequate protection. Even when it had accepted responsibility for what had happened, Washington’s response was so complicated that few workers or their survivors ever received adequate compensation. So much time had passed that work records no longer existed, and even the buildings where the men had worked had been torn down long ago. To replicate conditions that had existed then, the government developed an arcane system known as dose reconstruction, which uses old records and surveys to calculate how much radiation a worker was exposed to. Because such records are open to challenge by the victims, their lawyers, and the government, fair compensation can be delayed for years. That experience should stand as sufficient warning that waiting decades for scientific proof can steal even more from those who have been injured.
Science and research are working on solid ground that eventually will provide a set of answers about what happened in New York after 9/11. All three of the principal sources of data about ground zero—the fire department, the city health department’s World Trade Center Registry, and the Mount Sinai consortium, including the residents’ program at Bellevue Hospital—continue to do the long-term monitoring that should eventually shed light on the most vexing questions. The registry, with its post-9/11 baseline of medical information for 71,000 people, has already shown how the respiratory and mental health symptoms of those who were first on the scene have been the most severe and, in fact, have persisted longer than expected, pointing to a range of problems that will be around long after the trade center site is rebuilt. With additional funds from Washington, the registry has been verifying cancer and mortality rates, and someday might be able to determine whether the dust cut into life expectancy.
That, of course, is the question that has caused the greatest anxiety, no matter how it is answered. A “yes” or “maybe” about cancer can set off tidal waves of anxiety in a city where post-traumatic stress is probably the most pervasive legacy of 2001. Even a negative finding about the dust-to-cancer link triggers anger and sometimes scorn. In 2008, the World Trade Center Medical Working Group, which Mayor Bloomberg pulled together and included, among others, Philip Landrigan, Prezant, and Joan Reibman, reached a clear conclusion about cancer. “To date,” the report found, “there is no evidence for or against a causal connection between trade center exposure and any form of cancer.” When the group’s second annual report came out a year later, it reached the same conclusion. Yet because of the doubt that had contaminated the air over New York for so long, many people refused to accept that finding, certain beyond doubt that a link exists and reminded of it by the tabloids every time a responder dies in a cancer ward.1
When three responders died within five days of each other in fall 2009, all from some form of cancer, their families, the advocacy groups they belonged to, and the tabloid press all saw it as proof that, despite the studies, the dust is a killer and deaths would surely continue to mount. On the anniversary of James Zadroga’s death in January 2010, some rescue workers gathered at ground zero to read the names of those who had died, regardless of what science said about why. They read 103 names that day. Given the age of the responders, and the high rates of cancer that normally exist in the New York region, there is little doubt that the numbers indeed will continue to rise. But science will find it difficult to pry from that mass of data elements sufficient to form a causal link between cancer and the dust for many years to come.
Mount Sinai’s data eventually became much stronger than it was in the unplanned first few years when the Selikoff Clinic had been inundated with wheezing responders and volunteers who gasped for breath after giving their names, although some of the old problems persisted. Doctors there continued to produce important research that covered both raw numbers and individual cases. They found a correlation between duration of exposure and severity of symptoms that was in line with fire department studies. As the decade ended, the consortium continued to register around 100 new patients a month, suggesting a stubborn persistence of symptoms or an inkling among the remaining responders that there’s no harm in jumping on the bandwagon. Nearly 10,000 of the 27,250 who had been screened by then had received special medical care, with 71 percent treated for upper-respiratory problems, 46 percent for lower-respiratory problems, and 52 percent for gastrointestinal issues. Nearly a third needed psychiatric counseling for stress. Mount Sinai completed studies on anosmia among responders who had lost all or a portion of their sense of smell, and on sarcoidosis, with results comparable to the fire department’s critically important research on the disease.2
Landrigan and the others understood the limits of epidemiology and of their own data in meeting the needs of the very people the program was designed to serve. So they continued to do what they had tried to do from the very first days: to make the world aware that something serious was going on and to be on the lookout for signs that it could get worse. And as they produced additional research, they again raised questions about the extent to which advocacy could be taken without compromising science. In 2010 they put out preliminary research findings claiming they were the first to discover potentially serious heart problems in responders. Mount Sinai immediately garnered headlines and was mentioned in nightly newscasts. However, the reality might be different. In a scenario similar to the release of Mount Sinai’s multiple myeloma case studies, the researchers pointed out the many limitations of their own work—it was a small sample, there was no control group, and it was far too early to draw any conclusions. The results were presented at a medical conference, not in a peer-reviewed scientific journal. Press releases issued by Mount Sinai only nodded to those factors, and predictably, most news reports ignored them, increasing the worries of thousands of responders who now added heart failure to the list of potential health effects tied to the dust.
From the beginning, the most conclusive findings about the health implications of the dust came from the fire department, and that should continue. Drs. Kerry Kelly and Prezant were, in effect, company doctors, but because of their openness, transparency, and commitment, firefighters trust them. Prezant did not need to use early results to convince his people to come in for screening, nor did he have to advocate for them before reluctant funders the way Mount Sinai’s doctors did. The thin line between medicine and advocacy was stouter at the fire department than elsewhere. And Kelly and Prezant’s work after 9/11 demonstrated to the firefighters that their faith in them and their program had been justified.
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