City of Dust

by Anthony DePalma

  Prezant believed that he and Kelly might one day be able to use their data to link several autoimmune diseases to the dust, the way sarcoidosis and sarcoid-like granulomatitis were suspected of being connected. He intensively studied diseases such as Lt. Fullam’s polymyositis, which he suspected might actually be an autoimmune response instead of simply a connective tissue disease, and thus could have a stronger link to ground zero exposure. Having established that firefighters lost the equivalent of 12 years of lung capacity in the first year after the attacks, Prezant pursued an important milestone: an eight-year study looking at the persistence of lung injuries to determine how many firefighters had recovered since that first year, how many had remained the same, and how many had deteriorated further.

  The results of that study provided a revealing peek into the future. Prezant found that the passage of eight years had done little to improve conditions for many firefighters. Respiratory symptoms generally persisted with no meaningful recovery in lung function. That left a substantial proportion of workers—13 percent of the firefighters and 22 percent of the emergency service workers—with abnormal lung function. The long-term persistence of the conditions surprised Prezant, but he did not believe that it indicated disabilities were permanent. Improvement had not come with time, but he felt it could come with treatment. His next goal was trying to tease out whether those who took asthma treatments showed improvement, and if so, whether starting or increasing treatment could help others.

  Cancer had been the area of greatest concern since Joel Kupferman and Juan Gonzalez had first raised that alarm. The fire department, the Mt. Sinai Consortium, and the Registry actively tried to find answers to whether cancer rates among the responders had increased. The fire department published cancer rates from its retirement disability database that raised some issues, but it was a limited study that did not include all its responders. When Kelly and Prezant did an exhaustive five-year study after September 11, the results were revealing but far from conclusive. Yet during an interview with me3 in which he passionately described his research and its limitations, Prezant insisted that if a statement saying there’s no link to cancer is attributed to him, the sentence had to carry an addendum. “If you say that we haven’t shown anything yet, you have to in the same sentence say that we may actually publish something different from that, not 20 years from now, but even in the near future, because cancer is a moving target with variable latency periods.” In other words, nothing has been ruled out. “Everyone’s work on cancer is just a start. It has to be carefully looked at. We have to age-control it, population-control it. It’s much more difficult to do epidemiology on cancers.” Every initial study will have to be repeated, he said, because cancers are notorious for taking a long time to develop after the initial environmental exposure.

  Perhaps because he continued to see individual firefighters in his examining room every Sunday, Prezant was particularly sensitive to the impact his research had on them. He knew that once firefighters ask him “How’m I doing?”, their next question invariably would be, “How’re the other guys doing?” And because he talks to them frequently and knows them well, he knows how much easier he could make their lives if he were to just say that esophageal cancer, leukemia, multiple myeloma, or any other disease they are battling is linked to the dust, making them eligible for special treatment or additional compensation. But he also knows that if the results are not valid, countless numbers of people who were exposed to trade center dust may be needlessly worried. “For this vulnerable population, any additional stress without cause would be inflicting a second disaster upon them.” Without solid science, the credibility of all the trade center programs would be undermined and would handicap the researchers’ ability to advocate effectively in the future when answers do become available. Advocacy is most effective when it is based on scientific research that is careful, precise, and above reproach. “Rumors are tempting to embrace because they may be true, and, unfortunately, early on in advocacy efforts they can sometimes be more powerful than facts,” Prezant said. “But in the long run, it is facts that provide the strongest basis for advocating real solutions to healthcare problems and providing a true path to recovery.”

  To help guide them through the very real temptations toward advocacy, and to overcome the limitations of epidemiology, ground zero researchers followed a well-worn path. Where they could find no definitive proof, they applied the criteria of evidence that were put forward by prominent British medical statistician Sir Austin Bradford Hill, who refuted the tobacco industry’s claims that cancer could never be conclusively linked to cigarette smoking. Hill proposed nine criteria that, in the absence of absolute proof, could be used to determine a link between environmental sources and disease. Although all nine can be applied to the ground zero exposure, three are particularly significant. One is the strength of the association, which requires that an increase in dose or exposure result in a greater incidence of disease (known as the dose response curve). In his work, Hill looked at lung cancer rates in the general population and compared them with much higher death rates of lung cancer among cigarette smokers, clearly demonstrating the link. Various 9/11 studies have all shown that the closer responders got to the initial dust clouds and gasses, the greater their exposure was to the hazardous material, and the higher their risk of serious illness.

  Another Hill criteria is consistency across studies, which the fire department, Mount Sinai, and the registry have shown again and again. Applying this to ground zero means that when a single study cannot provide absolute proof about linkages, consistent results from several different studies can effectively make the case for it. The third criteria is biological plausibility, which Hill tried to explain in a classic 1965 essay by quoting Sherlock Holmes. Holmes, Hill wrote, had advised Dr. Watson, “when you have eliminated the impossible, whatever remains, however improbable, must be the truth.” The impact of caustic dust, fiberglass, and soot on respiratory systems is well documented and, without question, biologically plausible. The proofs are less solid when it comes to the dangers of asbestos, dioxin, benzene, and many other substances in the dust. Yes, they have been known to cause cancer and other serious illnesses. But latency periods have confounded the issue at ground zero, and reliable conclusions will require long-term monitoring.

  Dust became an enduring trope for the emotions and perceptions that hovered over New York, changing the outlines of the city’s reality. And in some ways, long after the dust itself was washed down and blown away, the city remained blinded, thrust into a prolonged battle for absolute certainty when such a standard simply did not exist. Large-scale disasters such as ground zero may call for another level of proof that recognizes a preponderance of evidence equally with a reasonable degree of certainty and a pragmatic acceptance of the human cry for help.

  This inchoate concept sometimes goes by the name of presumptive proof. As a result of post-9/11 legislation, most of New York City’s uniformed responders, as well as most of its municipal employees who were involved in the recovery operations at ground zero, were covered by presumption bills of some form that give them broad access to disability pensions or the workers’ compensation system if they develop health problems (respiratory and sinus illnesses, post-traumatic stress, cancer, or even certain autoimmune diseases) that can reasonably be linked to the dust. The New York Workers’ Compensation system gave everyone who worked on or near the pile nearly a decade to register their presence there, essentially leaving open the possibility of filing formal claims at some distant moment if an illness can be traced back to 2001.

  The Zadroga bill also was outfitted with presumptions (and a shorter list of qualifying conditions), but its rocky legislative history made its passage uncertain. It fell victim to the financial crisis and the uncertainty and skepticism hanging over 9/11 claims, which intensified after Dr. Hirsch released his conclusions about Zadroga’s death. With the election of President Obama and the revived Democratic majority, Carolyn Maloney�
��s office worked overtime with other members of the delegation to revive the bill. In summer 2009, a similar proposal was introduced in the Senate for the first time. That version of the Zadroga bill4 provided long-term funding for screening, monitoring, and treating tens of thousands of eligible responders in the New York area and around the country, along with residents of Lower Manhattan and parts of Brooklyn. It would have covered respiratory diseases, sinus conditions, mental health disorders, and certain musculoskeletal injuries, but it excluded cancer and autoimmune diseases. The bill also would have reopened the victims’ compensation fund and kept it operating until 2031, enough time for the traditional latency periods to play out. The bill would even have included long-term liability protection for the city and its contractors.

  After all the controversy surrounding the imperfect health studies that had been done—and not done—at ground zero, after the hysterical headlines and the misleading official statements, after all the legal maneuvering in federal court and the sharp elbows in Washington, and even after the shock of Hirsch’s conclusions about what had really happened to Zadroga, the bill that still bore his name seemed to finally address every concern. Still, no consensus could be reached. The Patrolmen’s Benevolent Association abruptly withdrew its support and campaigned openly against passage of the bill as written because blood illnesses and cancers were not included on the list of diseases linked to the dust. However, the Detectives’ Union maintained its support because a provision in the bill allowed those diseases and others to be added later, if warranted. Then activist community groups that had long supported the idea of a federally funded program for responders came out at rallies against this new version of the Zadroga bill, asserting that it shortchanged residents, school children, and downtown office workers. Their calls for a substantial expansion of coverage were met with frustration and sometimes anger from responders who believed that tinkering with the bill might doom it.

  As those internal squabbles within the ground zero community were being addressed, the Zadroga bill was overtaken yet again, this time by the President’s healthcare overhaul and then the budget crisis. Once more, the bill’s message seemed to fall on deaf ears. At a ground zero rally on the eighth anniversary of the attacks, Maloney, surrounded by labor leaders, firefighters, and cops, along with Joseph Zadroga and Catherine McVay Hughes and so many other people who had been involved in the struggles since September 11, passionately pleaded for passage of the Zadroga bill. But the public address system at the temporary podium she used could not amplify her voice enough to be heard over the roar of construction machines in the ground zero pit. As she called for action, only those who were closest to her—and who already agreed with her—could hear. The new towers were going up right behind her, and the sound of their rebirth drowned out the cries for help.

  A few months later, the Obama administration shocked Maloney and the rest of New York’s congressional delegation by abruptly withdrawing its long-promised support for the Zadroga bill, saying that economic hard times made it impossible to back the bill and its price tag of $11 billion over 30 years. The administration did offer to double the yearly appropriation for responder medical programs to $150 million, which would keep them captives of the annual budget cycle. Deeply disappointed, Maloney and the others vowed to fight on, certain they could convince President Obama that the need was real and was not going away.

  Resolving these matters is more than simply a medical or scientific challenge. It has to address the way society conceives of the truth. Public perception has shaped the dust as much as the obliterating force of the collapsing towers created it. The dust was transformed by turns from something harmless—which it clearly was not—to something heinous—which, in most cases, it wasn’t either. Arrogant media hijacked the story, repeatedly distorting the disaster by either playing up or toning down the danger and ignoring science. An arrogant city government used fear to wrest money from Washington or to slough off its own responsibility. Politicians arrogantly used the disaster to further their careers. And in the end, even some responders acted with arrogance, claiming to have all the answers and intimidating those who dared question them. They all thought they knew best and watched out for their own interests, when the most sincere motivation in the face of disaster ought to have been ensuring the safety, health, and spirit of the city and its people. They were not courageous enough to relay the truth in all its complexity, to distinguish between short-term and long-term health effects, to be precise about what was known and what won’t be knowable for a long time, to insist that the difference between safe and dangerous is a matter of data, not degree.

  Many mistakes were made. Many opportunities were missed. After nearly a decade, the recovery of New York was still ongoing. Even as the gaping hole at ground zero filled with the concrete and steel of a new vertical port, and sad memorials took shape beside sacred places, the city did not return to what it was the morning of September 11.

  As some of the distortions were swept away, the bottom line became somewhat clearer: Many people had been sickened by their exposure to the dust. Many others who had breathed in the dust had not become ill at all, or not in any lasting way. The 2009 report of the mayor’s working group concluded as much: “While the vast majority of people exposed to the attacks on 9/11 and its immediate aftermath are healthy and symptom-free, thousands of exposed individuals continue to suffer from WTC-related mental and physical health conditions, and some of these conditions are likely to be chronic.” This is what reporter Bob Woodward and Carl Bernstein once called “the best obtainable version of the truth.” Those arrogant enough to claim otherwise—who used the tragedy to declare that everyone who breathed the air that Christie Whitman had called safe had become ill, or who contended that all those who had said they were sick were just trying to exploit the system—were guilty of manipulating the truth for their own purposes.

  It is important to get this right. To figure out how to respond to an environmental disaster without first throwing environmental safety overboard. To devise a way to balance the economic needs of returning to normal with the need to ensure that the aftermath of a disaster not be allowed to claim more victims. For us to achieve this balance, we need to better understand the limits of science and the degree to which we can guarantee a safe environment. We need to acknowledge that we know what research can tell us, and when, and be prepared to make decisions on that schedule, not our own. We need to vow to stick to the truth, no matter where it leads. We need to strive for certainty, or as close to certainty as is possible or appropriate. And when such assurances cannot be given, we need to avoid temptations to play on public sympathies with weak truths and distorted realities. If the limits or our knowledge and capabilities can be truthfully explained, those who are most affected might comprehend that the efforts of science to provide solutions are constrained by an imperfect reality—but those efforts are better than no solutions at all.

  It also is important that we know how to deal with another disaster so that we can limit its afterclap—to use an ancient but fitting word—more comprehensively than was accomplished at ground zero. An afterclap is the unexpected event that comes just when everyone believes something extraordinary has ended, as with the aftershocks that followed the 2010 earthquake in Haiti. In New York, the list of victims of the trade center disaster was not capped on 9/11. And it didn’t end with the addition of Felicia Gail Dunn-Jones or with Dr. Sneha Anne Philip, a neighborhood resident who had disappeared on 9/11 and was declared legally dead by the courts in 2008, thus becoming victim 2,751. Hirsch also examined the death of Leon Heyward, a city employee who was swallowed by the dust cloud on September 11 and died of lymphoma-complicating sarcoidosis in 2008. After reviewing the record, Hirsch linked Heyward’s death to the dust and, in 2009, declared his death a homicide, adding his name to the official list of victims. He is number 2,752. Surely others will follow.

  Ground zero’s afterclap itself has prolonged fears. Years after the attack
s, subways riders in New York could still board a No. 1 train downtown and see it plastered with posters, paid for by the city’s Health and Hospitals Corporation, asking the questions, “Lived There? Worked There? You Deserve Care,” and directing them to call a 9/11 health hotline. Workmen removing air-conditioning units from the wall of a building on Greenwich Street in downtown Manhattan found the cavities coated with ground zero dust. Residents moving bookshelves and heavy desks regularly discovered the dust in those hard-to-reach places. Catherine McVay Hughes kept a half-dozen high-powered air purifiers humming in her apartment day and night. Tiny remnants of what once were the world’s tallest buildings were probably tucked into corners all over the city. Paul Lioy still kept some of the strange mixture in his cold room, macabre tufts of catastrophe that could no longer harm anyone. The damage had already been done, though how much wouldn’t be known for decades to come.

  Even then, the true story will take shape only if strict standards of science are imposed, without emotion or pity, but with an understanding of what is technically possible. As compassion fatigue about ground zero set in, battle lines became blurred, and even some of those who suffered the most, such as Ernie Vallebuona and Dave Fullam, started to drop out, shunning the rallies and congressional hearings and wanting nothing more than to spend precious time with their families and start anew.

  More interest has been focused on rebuilding the office towers and memorials at ground zero than on rebuilding the lives of those who were injured there. In many ways, building a skyscraper is easier than putting individual lives back together. Yet even the physical reconstruction efforts downtown have not been spared the misery of drawn-out emotional and economic battles. Except for the conspiracy fringe, no one doubts that the towers were destroyed by terrorists, and although disputes over how the rebuilding should proceed drag on, there’s almost universal agreement that the World Trade Center should be rebuilt in that consecrated place. But no universal agreement arises over what happened after the buildings fell and what should be done for those whose lives were reshuffled by the dust.