When first responders rushed into the collapsing remains of the World Trade Center on September 11, 2001, they were not thinking of self preservation. They were there to save lives. The unfortunate irony is that, ten years later, it is those first responders - those heroes - who face serious health consequences as a result of hazardous respiratory exposure.

Respirators were too few and far between in the beginning of the rescue efforts, Webber said, so workers just pressed on without them. When the equipment did become available shortly thereafter, there was another problem: lack of compliance.

"The really sad thing is that people just weren't wearing them," recalled Paul J. Lioy, PhD, author of Dust: The Inside Story of Its Role in the September 11th Aftermath. Lioy, who is also a professor of environmental health and occupational medicine at UMDNJ-Robert Wood Johnson Medical School and an expert in human exposure, arrived at Ground Zero within the first week to gather dust samples for analysis.

"There were bins of respirators that were just sitting unused in the staging area. There were signs everywhere saying 'Wear Your Respirator,' but people just didn't comply," he said. Perhaps it was due to the ungainliness of the equipment, he suspected, or due to the fact that they made communication between the responders nearly impossible. Or, maybe it was just the urgency of the moment that caused responders to push on with unfettered determination.

Whatever the case, these brave individuals quickly developed what was termed "WTC cough." And more slowly, over a decade, they have experienced continuing, increasing abnormalities in lung function.

What the Dust Revealed
So what was in the air that day when the responders fulfilled their call to heroics? It took Lioy about a month to find out.

"We began to get the real picture of what they were breathing in by October," he recalled. "Asbestos was the first thing everyone looked for; because it was known there was some asbestos on the towers' beams." However, the air was cleared for asbestos contamination, and that clearance was publicly proclaimed by Christine Todd Whitman, then director of the U.S. Environmental Protection Agency.

"The problem was, it was only cleared for asbestos. That didn't mean the air was clear of other contaminants," Lioy said. In fact, the air was full of fairly large particles, "not the kind you find in the ambient air. These were super coarse particles that we don't normally see in New York City. They don't penetrate quickly to the deepest part of the lung; they get caught in the upper lung, the upper airways. When we put two and two together, we realized these probably caused the WTC cough."

Much of the Sept. 11 dust was cement, and its high basic pH level was particularly irritating to lungs, Lioy explained. In time, some of these particles would be pushed out of the responders' lungs; still others would settle into their alveoli.

When the 110-story glass towers sustained the crippling explosions of the attack, "the glass disintegrated into very thin, long glass fibers," Lioy said. "The responders inhaled those too; they acted like arrows going into the lung. And they weren't clean; debris got caught on the fibers. It was a very complex situation."

While researchers eventually got a good idea of the components of 9/11 dust, the same cannot be said for the gasses that fouled the air.

"The gasses are the great unknown," Lioy said. "No one ever measured the gasses. It's reasonable to assume it was gas from combustion. But we don't know what the levels were. We don't know what the synergism was between the gas and the dust particles. We'll never know."

Respiratory Aftermath
What we do know is that responders, as well as other citizens exposed to the air swirling about Ground Zero, have largely suffered from respiratory illnesses and post-traumatic stress disorder (PTSD) in the years that have followed. And while an optimistic report published in the June issue of the Journal of Occupational and Environmental Medicine claimed "a low rate of lung function decline in WTC responders," based on a study led by Eli J. Kleinman, MD, supervising chief surgeon of the New York Police Department, it might not tell the whole story.

Specifically, the study looked at 206 responders from the NYPD emergency services unit (ESU). Unlike the firefighters on the disaster scene, these workers had not had a history of repeated exposure to respiratory hazards. Because the ESU workers are required to undergo annual lung function tests, a good pre-disaster baseline was available.

In 95 percent of the responders, the researchers found that while lung function levels were lower at follow-up tests in 2002 and 2007, their changes were consistent with age-related declines, according to a news release from the American College of Occupational and Environmental Medicine. The remaining 5 percent did have reductions consistent with mild lung dysfunction. Researchers noted the decreased lung dysfunction was more likely to be seen in officers with pre-existing respiratory symptoms, those who were present at the time the towers collapsed, and those who worked particularly long hours at Ground Zero. Smokers had greater declines in lung function, as did the officers who didn't wear respiratory protective devices while working at the site.

Other Perspectives
But now the coin flips. Benjamin Luft, MD, director of WTC MMPT at Stony Brook University of Medicine in Long Island, NY, has been tracking and treating 6,000 qualified enrollees, all displaying medical after-effects from the terror attack.

"The real deal is this: A significant number of patients continue to have reactive airway disease which is not necessarily measured by abnormalities in the lung test, but is measured by functional abnormalities."

He explained there are two tracts to the event-related respiratory diseases. There was the initial irritant damage to these people that caused permanent destruction and permanent disease, and then there are the hyperactive or functional abnormalities, such as those that occur with asthma. This may not correlate with actual scarring, but the result is functional abnormality, shortness of breath, and a need for medication.

This is further complicated by upper respiratory issues found in this patient population. "We see a lot of chronic sinusitis, rhinitis, and upper airway problems, even in the absence of continued irritant exposure," Luft said. "We don't fully understand the pathogenesis, but we are seeing it clinically. These upper airway problems can lead to sleep apnea and other impairments. Their health continues to be damaged because of the complexity of their problems. It is what it is."

There may be other more shadowy issues that stalk WTC responders. Teresa Barnes Tosi believes there also could be a link between the 9/11 attack and a 156-percent increase in the known incidence of idiopathic pulmonary fibrosis (IPF) across the last eight years in the U.S. Vice president of patient outreach and one of the founding members of the IPF Foundation, Tosi admits there is not enough data on correlating numbers to prove her suspicions. "The disease is not well tracked," she lamented, "but there is legislation before Congress to try to build a national database."

Nevertheless, Tosi has seen a number of responders within the IPF patient community she serves. "I've met some who say they had no respiratory or lung problems prior to the attacks."

Tosi, who herself has lost five family members to IPF, for which there is no cure, asked, "What were the responders' exposures [that triggered IPF]? What were they breathing? We know that if you are exposed to a number of different chemicals you are at risk. They believe their exposures were at Ground Zero. It was the perfect storm."

A Cycle of Dysfunction
And to make a difficult situation worse, all of this is often further complicated by the presence of trauma. Many of Luft's patients have PTSD after witnessing the carnage at Ground Zero.

"These patients have witnessed atrocities. When we hear the stories of what they saw, it is just extraordinary," Luft said.

When physical and psychological traumas team up, "we find they act in a cyclical manner; that is, one hurts and affects the other," he explained. "There is a lot of outpouring of the autonomous nervous system, which then worsens the respiratory problems, and then causes even more anxiety. It takes a lot of intensive therapy to break the cycle of dysfunction."

Perhaps most telling is a new study published in May by the American Journal of Industrial Medicine. A team of researchers, which included Webber, examined the effect of the WTC rescue/recovery activities on the retirements of firefighters who were among the first responders. They looked at the total number of 7,763 retirements between 1994 and 2008, comparing the number of retirements and accidental disability claims seven years before and seven years after the 9/11 attack.

They found in the seven years prior to the attack there had been 3,261 retirements, 48 percent of which were accidental disabilities. In the seven years following the attack on the WTC, there were 4,502 retirements, 66 percent were accidental disability retirements. The study reports "the increase in accidental disability retirements are primarily due to respiratory illnesses, nearly all attributable to obstructive airway diseases (asthma, asthmatic bronchitis, or COPD) with a few attributable to interstitial lung disease (sarcoidosis or pulmonary fibrosis)." It also states, "Additional increases were attributed to psychological-related illnesses and musculoskeletal injuries incurred at the WTC site."

Researchers concluded: "In addition to the 341 firefighters who died that day and the attrition that introduced an incredible challenge, there have been increased numbers of respiratory and psychological-related accidental disability retirements since 9/11 - far in excess of pre-WTC levels." And while the researchers write that human suffering cannot be measured in dollars alone, the increased WTC-related retirements among firefighters have produced an increased financial burden of $826 million on the FDNY pension system.

Going Forward
It seems the only true benefit in looking back to that infamous day is to determine what could be done differently tomorrow. Luft offered a few apt observations to consider in the event such perilous storm clouds should gather in the future. He called for greater transparency from government, health and environmental officials, and more care in delivering an "all clear" message when indeed all is not. "I have never heard a responder say he wouldn't have gone into Ground Zero that day, but I've heard them say they would have been more cautious if they had had accurate information."

And he believes we as a society need to take responsibility for health issues that have grown out of the responders' acts of courage. "In the days following the Sept. 11 tragedy, we were all very appreciative of the responders. But as time went on our society became very concerned about who would have liability to take care of them. For too many years people - various parts of the government - have tried to pass the buck and have not provided adequate services or the reassurance that was needed."

Indeed, these responders continue to carry the biggest burden of the 9/11 experience. "We should all recognize that fact and be very grateful to them," Luft said.

Valerie Neff Newitt is an ADVANCE contributing editor.