First Responders' Health Care an Insult to Heroism

By Bob Considine, The New Jersey Star-Ledger

11 September 11

 

he street Margie Smith lives on is named after her late husband. The curb by her driveway is painted black and gold, for his beloved Pittsburgh Steelers.

Inside the cozy Barnegat rancher, there are countless pictures and memories of former NYPD officer Harold "Smitty" Smith.

"One minute, you're fine and you think everything will be okay," she said. "The next, you wonder what the heck happened.... You realize how bad of a day 9/11 was more now than you did 10 years ago."

Smitty, the love of Margie's life, died in this home in March from kidney cancer at age 47. Strong of body before Sept. 11, 2001, and of mind and character until his dying day, Smitty never regretted his duties at Ground Zero and sifting through the toxic rubble of the World Trade Center for months afterward, friends and family said.

Since the dust settled and dispersed a decade ago, thousands of first responders have been diagnosed with pulmonary, respiratory, skin and blood disorders, as well as cancer. Hundreds have died, according to New York City officials and other groups, although not all of the deaths have been linked directly to Ground Zero.

Many of the sick and dying have endured years of financial instability due to job and benefits losses. A lifeline was thrown in January when the James Zadroga 9/11 Health and Compensation Act finally found its way to President Obama's desk, surviving a sea of due process, politics and bureaucracy.

But for many others, relief isn't coming. In July, the National Institute for Occupational Safety and Health announced there was not enough scientific evidence linking cancer suffered by Sept. 11 first responders to time spent at Ground Zero.

Margie Smith didn't stand to gain from the fund with her husband's death, but says the decision to exclude cancer patients is nothing short of an indignity.

"It's a disgrace to my husband, who gave of himself and went through so much inhumane suffering," she said. "And it's a disgrace for the people who are going through what we went through. These people are still suffering, and they're losing their homes because of the medical bills."

After years of having to justify a need for assistance, it seems certain emergency, transport and cleanup workers still have a fight on their hands.

"We've ran into ignorance," said John Feal, founder of 9/11 first responders advocacy group the FealGood Foundation. "We've ran into politics as usual.

"You hope, going forward, we can run into transparency."

From the Start

The clouds of dust that billowed over Lower Manhattan after the twin towers fell on 9/11 were thick enough to block the sun.

Shedding light on exactly what first responders and other residents ingested on the day and beyond - and the effects on their bodies - continues a decade later.

The most definitive statement that scientists can make today is that the combination of building materials, gases that went unmeasured and asbestos burning at more than 1,000 degrees Fahrenheit was - and is - unprecedented.

"When you have such a complex mixture and an inhalation exposure that's complex, it's difficult to understand," said Paul Lioy, vice chairman of environmental and occupational medicine at UMDNJ-Robert Wood Johnson University Hospital and a deputy director of the Environmental and Occupational Health Sciences Institute at Rutgers University. "It didn't fit into someone's box."

What Lioy was able to ascertain in the years of research that went into his 2010 book, "Dust: The Inside Story of its Role in the September 11 Aftermath," was that most dust particles from Ground Zero would have 100 to 250 materials in it. Those large particles - more than 10 microns in diameter or .01 millimeters, about one-quarter of the diameter of a human hair - had the ability to go deep into the lungs.

Lioy said exposures during the first 24 to 72 hours and in the first few days thereafter were generally the most dangerous because of the fires and the quantity of "resuspendable dust" - dust that settles and gets kicked back up. Lioy said an alarming number of people were not wearing proper respirators.

It wasn't long before studies of first responders revealed chronic health issues.

The earliest, conducted by the Office of Medical Affairs at the Fire Department of New York City in the first six months after the attacks, found that 8 percent of the 1,636 firefighters present when the towers collapsed had been diagnosed with the so-called "World Trade Center Cough" - defined as chronic rhinosinusitis, asthma and/or bronchitis, which is often complicated by gastroesophageal reflux, or GERD.

Of the 332 firefighters initially diagnosed with the cough - a number that includes those who responded immediately or in the days afterward - 90 percent had not returned to work by Sept. 11, 2002.

Problem Multiplies

By 2006, a study conducted by Mount Sinai Medical Center from July 2002 to April 2004 found 70 percent of 9,500 Ground Zero workers - construction workers, transit workers and volunteers, as well as firefighters, law enforcement officials and EMTs - had suffered lung dysfunction or other abnormalities.

Most surveyed said they had normal lung function before their days on the pile or in the pit.

For Rich Skinner, a Red Cross disaster volunteer who was on the scene on Sept. 11, 2001, and several days after, serious problems didn't really occur until 2003.

"I was choking and gagging all the time," said Skinner, of Lanoka Harbor. "Nobody could really figure out why."

Skinner, like thousands of other first responders, would connect with the World Trade Center Medical Monitoring & Treatment Program. Federally funded by the National Institute for Occupational Safety and Health, the program provides free health monitoring and treatment for workers and volunteers at the World Trade Center site.

The Environmental and Occupational Health Sciences Institute in Piscataway became the New Jersey-based clinic for the monitoring program in 2003, combining with four other clinics in New York.

Iris Udasin, a doctor of internal medicine at the institute, recalls opening the door to about 200 first responders in that first year. Today, she says, the institute gets about 1,000 visits a year. On a random visit last month, a full waiting room of first responders were there for an analysis.

"We thought we were just going to be surveillance, telling them this is what you have to do to prevent yourself from getting sick," Udasin recalled. "Instead, we discovered that most of our patients were actually already sick."

Man Behind the Law

James Zadroga did not have the benefit of uncertainty after 9/11.

Shortly after serving his 450 hours at Ground Zero, the incessant coughing and labored breathing started. The initial prognosis for the burly NYPD officer and former Ocean County resident was grim.

"He was sick right away," said Joe Zadroga, James' father and a former North Arlington police chief. "The doctor told him after his first visit that he would be dead in five years."

Justifying his ills to his employer was as challenging as his next breath.

Despite a stellar 10-year career with the department's street crime unit, Zadroga was required to visit a police doctor in Queens each time he took sick time, according to his father. He would also get regular visits from a supervisor to make sure he was home when he was out sick, as per New York Police Department policy.

In a journal written in the throes of his illness, James Zadroga grew resentful:

"I can't pay my bills and work doesn't want to acknowledge that I'm sick, depressed and disgusted," he wrote. "They remember the dead but don't want to acknowledge the sick who are living."

An NYPD spokesperson said unannounced visits to any officer on long-term sick leave are standard procedure.

By 2003, Zadroga was officially diagnosed with acute silicosis - a form of occupational lung disease. He required constant aid from an oxygen tank and was too weak to get up the stairs, let alone endure a lung transplant.

Zadroga's initial application for line-of-duty disability retirement was denied by an NYPD medical board. Despite his being only 30 years old and a nonsmoker with no respiratory problems before Sept. 11, the board deemed a lack of conclusive evidence connecting his illness to work at Ground Zero.

In October 2004, Zadroga's wife, Ronda, died unexpectedly at age 29. The Zadrogas said it was the stress of the situation that killed her.

Eventually, with Zadroga's parents lobbying multiple government officials, the police board reversed its decision. And the September 11th Victim Compensation Fund awarded a settlement of more than $1 million to Zadroga in 2004.

But on Jan. 5, 2006, James Zadroga was dead at age 34. His young daughter, Tyler Ann, has been in the care of Joe and Linda Zadroga since.

"It was very difficult for us," Joe Zadroga said. "The most frustrating thing was watching him get sicker and sicker and everyone just refused to admit what he was getting sick from. He couldn't get the proper care he needed."

Final Battle

Zadroga's name would be put to the test after his death, as well.

It would also carry the cause for thousands of other ailing first responders who had a bureaucratic fight ahead.

In April 2006, Toms River-based pathologist Gerard Breton conducted an autopsy of Zadroga for the Ocean County Medical Examiner's Office and determined that the cause of death was "directly related to a 9/11 incident." Specifically, Breton found materials identified as talc, cellulose, calcium phosphate and methacrylate plastic in Zadroga's abnormally heavy lungs.

By August - at the behest of Sens. Robert Menendez and Frank Lautenberg, both New Jersey Democrats, and Sens. Charles Schumer and Hillary Clinton, both New York Democrats - New York Gov. George Pataki, a Republican, signed the first Zadroga Act to provide benefits to families of workers who died of 9/11-related illnesses.

But in October 2007, the New York City Medical Examiner's Office said that Zadroga's death was not related to his work at Ground Zero. Chief medical examiner Charles Hirsch reported in a statement - and told the Zadrogas upfront - that the foreign materials in their son's lungs were not the result of inhaling dust, but from ground prescription drugs that scarred his lungs.

In response to the findings, New York City Mayor Michael Bloomberg added: "We wanted to have a hero and there are plenty of heroes. It's just in this case, science says this was not a hero."

At this point, Joe Zadroga determined that New York City was taking extreme measures to avoid the potential high cost of covering other families of Sept. 11 workers who died. Zadroga said the city "played dirty."

"I was a chief of police, so I was involved in politics for nearly 10 years - so I know how politics work," Zadroga said. "If your boss tells you, 'This is what I want you to find,' that's what you find."

Bloomberg's office did not respond to requests for comment.

The reclusive Hirsch staunchly defended his findings in a 2008 article published in the New Yorker, while Joe Zadroga maintained his son had never ground up or injected any medications.

The Zadrogas eventually obtained a third opinion in fall 2007 from Michael Baden, chief forensic pathologist of the New York State Police and the former medical examiner of New York City. Citing the presence of glass fibers in Zadroga's lungs, Baden supported the theory that Zadroga's death was due to the dust.

Whether or not people believed Zadroga was the first rescuer to die from exposure at Ground Zero, his name was ultimately attached to the federal bill that would establish long-term monitoring and financial benefits for those affected by the dust at the site.

A Law at Last

The intent of the James Zadroga 9/11 Health and Compensation Act, which was introduced in June 2009, was to establish a monitoring and treatment program, including mental health services, for ailing first responders.

It would also reopen the Sept. 11 Victim Compensation Fund that Congress established after the attack and limit liability for New York and trade center contractors in resolved or pending claims.

Support for the federal Zadroga bill was led by Rep. Carolyn Maloney (D-N.Y.) and buoyed by the FealGood Foundation, a nonprofit group created by Feal in 2005 that raises awareness and money for first responders who were injured or sick after 9/11 and in need of disability coverage or funds.

Feal, a demolitions expert who volunteered at Ground Zero and had half of his foot amputated after an 8,000-pound steel beam fell on it, made 91 trips to Washington, D.C., from his home in Nesconset, N.Y., to lobby lawmakers to pass the Zadroga bill.

It was a difficult fight. Critics in the House and the Senate questioned the $8 billion cost over 20 years and whether the government could ensure the money would go only to those truly sickened by World Trade Center dust.

Others argued it was a New York metropolitan-area problem, not a national issue.

"It was beyond frustrating," Feal said. "You wanted to choke the Republican - or, in some cases, Democrat - out of them and pump the American into them. There were so many people who just put their ideologies in front of the American people.

"These men and women who were sick and struggling were the best of what America had to offer. It was insulting."

In September 2010, a second House vote approved a $7.4 billion Zadroga bill. But in December 2010, Senate Republicans filibustered the legislation until a settlement was reached on Bush tax cuts and federal funding.

The stall outraged many, including "Daily Show" host Jon Stewart, who, in a memorable and emotional rant, skewered Republicans who dared use "9/11 imagery to get yourselves elected."

"I was ashamed of my own party," said Skinner, a Republican and a Red Cross volunteer who also made dozens of trips to Washington. "When we would walk into congressional offices, we were treated poorly by the Republicans and welcomed with open arms by the Democrats."

Finally, after years of lobbying and rankled feelings, the James Zadroga 9/11 Health and Compensation Act was passed by Congress on Dec. 22, 2010. It was a reduced bill costing $4.2 billion to be spent over five years - $1.5 billion covering health benefits and $2.7 billion for compensation - with provisions to avoid fraudulent claims.

Joe Zadroga said he was elated.

"But I thought the fight was over," he said.

Another View

Count Bill Cox as a 9/11 first responder who abhors the title and those who try to get on board what he calls a gravy train of compensation or coverage while lacking the true experience or ailments.

"To me, the true first responders are the ones who went in and didn't come out," said Cox, a retired NYPD detective now working in the Barnegat school system.

"I remember when I had a heart attack, some people said, 'Oh, it must have been from 9/11.' I was like, 'No, it was 35 years of smoking and eating more red meat than a T. rex - not from sniffing chalk dust at 9/11.' ..."

While Cox's view may be extreme to first responders in need, it does highlight some concerns of those who didn't initially support the Zadroga Act and the unique challenges for keepers of the fund.

Sheila Birnbaum, a New York City lawyer who has mediated lawsuits brought by families of 9/11 victims, was hired as special master of the fund by the U.S. Department of Justice. She says the goal of the fund is transparency in dealing with victims, while keeping a careful eye out for opportunists who consciously - or subconsciously - try to take advantage of the system.

"There are people who know they were never at the pile and are trying to get something for nothing," Birnbaum said. "Sometimes people begin to really believe their injury or illness was caused by what they experienced there, when it really had not been."

The proof, Birnbaum says, is mostly in the paperwork. Applicants must submit work records through their employers that substantiate their experience and doctor's records verifying their ailments or injuries. Interviews may also be part of the process.

"You'd be surprised," Birnbaum added. "There are people who will also provide tips if they think people are trying to take advantage of something."

Claimants waive the right to sue any private or city entities that executed rescue, recovery and cleanup work at Ground Zero and they cannot appeal the fund's decisions. The fund also limits an attorney's take to 10 percent of any proceeds.

Health coverage under the fund began earlier this year. Claims for compensation are expected to be processed by Oct. 1.

The presumptively covered conditions include a list of aerodigestive disorders, including lung disease, chronic respiratory disorder and coughs, asthma and others. Back pain and carpal tunnel syndrome are also covered.

Cancer Caveat

Claims by cancer patients, however, will not be heard.

In late July, the National Institute for Occupational Safety and Health announced that it had determined there was too little scientific evidence linking cancer to time spent amid the dust.

Yet a new study published Thursday in the British medical journal the Lancet showed that firefighters who were exposed at Ground Zero were 19 percent more likely to develop cancer than those who were not there.

And so continues a passionate debate pitting the emotion and righteous anger versus the black-and-white of science.

In one corner, there are people who served during 9/11 with rare cancers at a relatively young age and had no prior health issues or family history of cancer. In the other, scientists who need years to determine the origin of a cancer and have incomplete results determining that cancer rates at Ground Zero are higher than anywhere else.

In the middle, Birnbaum plays administrative referee.

"It's very difficult to describe to people who feel that this happened because of exposure to debris and dust from the World Trade Center," she said. "Unfortunately, as we know, cancer is a very complicated disease and we are still at the beginning of the process."

While Birnbaum said researchers feel the urgency of financially strapped cancer patients who were at Ground Zero, it's of little comfort to the patients themselves.

Newark Fire Department Capt. Michael Sorace spent 10 days at Ground Zero helping out with recovery efforts for the state Task Force One Urban Search & Rescue. In 2006, at age 47, he was diagnosed with thyroid cancer.

After three operations and radiation that sapped his strength for months, Sorace is not currently able to apply for compensation through the Zadroga Act to help out with his remaining medical bills.

While he is still able to work through his side effects of limited neck mobility and low saliva, Sorace carries more mental uncertainty. Where did his cancer come from? And what happens if it comes back?

"Thyroid cancer in New York City firemen at Ground Zero is a known quantity, so I do wonder if I got it the same way," Sorace said.

"But it's funny - I get hammered by friends and relatives asking me, 'Mike, are you getting your bills paid?' I tell them I don't have a cent coming from that fund. I don't even want to talk about it."

John Howard, director of NIOSH, said some 294 medical journal articles in 18 publications were researched in the July report. He also acknowledged that responders were likely exposed to multiple carcinogens. But none of it contained "any quantitative data concerning cancer as a health outcome."

At least not yet.

"It just takes so long to do this kind of work in the correct, evidence-based way," Udasin said. "It's not because anybody's bad or don't have the records or lazy. It's just a very strict criteria to settle into a determination and these studies take a lot of time."

But for many, too much time already has passed. Just last month, the NYPD union officials reported that 263 city officers who had worked at Ground Zero had cancer - and 45 had died.

Feal said he already has been to 51 funerals for 9/11 first responders who had cancer. By the time cancer is covered - if it is covered - he wondered how much of that $4.2 billion will be left.

"That's why we'll probably be fighting for an amendment," Feal said.

'They Deserve Better'

It's the end of a quiet Tuesday in August and David Howley is relaxing in his Edison home. It has been a good day.

"I went to my (ear, nose and throat) doctor this afternoon and he looks down my throat and just starts smiling," said Howley, 51. "And he never smiles."

The doctor tells Howley that it's the best his throat has looked since a cancerous lump discovered in 2007 has been treated. Howley was diagnosed with squamous-cell carcinoma of the neck and after 25 radiation treatments - his nearly "four years of hell" - and is proud to say he's in remission.

While the retired NYPD officer counts his blessings, there is no doubt in Howley's mind that his cancer is related to his arrival to the scene at 10 a.m. on Sept. 11, 2001, and the months there afterward. To this, he offers his own scientific data.

"In over 98 percent of the cases of this cancer, the victim has either been a heavy smoker or a heavy drinker or someone who chews tobacco for a long period of time," he said. "And that wasn't me, okay?

"The thing is, I do understand the need for scientific data in order to have cancer covered - I really do," he said. "But there are just so much anecdotal evidence of young people who were there getting rare forms of cancer, that has to count for something.

"And right now, it doesn't count for anything."

For Margie Smith, widow of Harold "Smitty" Smith, that's a legacy that she can't handle.

"The crime of it is, if you asked him - or most of the other people who are sick - to do it again, knowing they might get cancer, they would do it again," she said. "For that alone, they deserve better."