I never complained, or sued, nor will I, but in case I die...

New York Daily News - http://www.nydailynews.com

Saturday, July 29th, 2006

They were among the 40,000 who stepped forward for New York and America after 9/11, and they speak here of the price they paid for serving. Their stories are not unusual. No, they are typical among the more than 12,000 men and women who were sickened by breathing the toxic cloud that shrouded Ground Zero. They tell of damaged lungs and psyches, of fears of worse to come and of beliefs that the cloud has brought on cancers and may bring death.

They feel betrayed by a government that said the air was safe and cast aside by officials who failed to address the sweeping nature of the resulting epidemic. Above all, these personal accounts stand as an indictment of a neglectful city and country, which must now right the terrible wrong of forgetting those who did the extraordinary at great personal cost.

A smell you never forget

For 20 years, I served as a detective with the New York Police Department, and I retire tomorrow at half pay without medical disability.

I can still smell the debris of the Fresh Kills landfill. After you stepped off the bus for your 12-hour shift, the stench was just enormous, and as you walked around, you would see bubbling whirlpools. Fifteen minutes in, I would have splitting headaches. I'd go to the tents, where conveyer belts would bring debris to pick through for human remains.

For years after, I had headaches, and I still have bloody noses and sinus problems. I never complained, or sued, nor will I, but in case I die, I've kept everything since that day, every news article, so maybe my two kids will get some compensation for my life.

Denise Bellingham, 57, Medford, L.I.
Leaving my kids
I was at the site as a volunteer EMT for three days - on 9/11, and then on the 13th and 14th. I was working triage from a deli as WTC 7 burned and fell. Going down there that morning, I left my two children at home. At the time, they thought I was dead, but when you have a job you are trained to do, and you do it well, then you just go do it. And now, I've been officially disabled since 2003. I have acid reflux, migraine and sinus headaches, asthma, depression, post-traumatic stress disorder, shingles and flashbacks, but no health coverage because I was a volunteer.

I don't have lung disease from smoking. I don't have lung disease from a meth lab. I don't have it from doing something I shouldn't have been doing. I have it from the World Trade Center. What nobody's talking about is the next time something happens. You can't just run into buildings anymore. Those who did are on Death Row and being punished for what we did.


Reggie Cervantes, 45, Kansas City, Kan.
Running out of time
As an American, as a New Yorker, I thought I had an obligation to help. Somebody demolishes a building in my city, it's my duty to clean it up. I'm a union worker. But now, I'm living through a nightmare. The city employees got taken care of, but we didn't get anything.
Each time I go to Mount Sinai Medical Center, I lose more of my lung. The first time, it was 21% gone. The next, 33%. Now they say I've lost 44%. I can't even walk up a flight of stairs. I've got three kids and can't afford to take time off work, but I'm worried about the future, about my wife and my children. The lung specialist I went to couldn't diagnose my problem. He didn't know what to say to me, except to guarantee that in 10 years I wouldn't be walking around.


Daniel Arrigo, 51, Staten Island
Denied
I worked more than 100 hours doing search and recovery as a police officer. I was in the lobby when the building started collapsing, and I was there through the end of the cleanup. Now I have post-traumatic stress disorder. I've got acid reflux. I've got asthma and upper-respiratory infections. I can't go near large buildings anymore.

The Police Medical Board, four times now, denies medical liability. They say my diseases are not related to the World Trade Center, or that my paperwork isn't good enough, or that I need to go to their doctors instead of mine. I just want to be home with my kids. The money doesn't matter now. I'm never responding to a terrorist attack again: I'm just going to go right home with my wife and kids.


Robert Curcio, 34, Staten Island
Whitman's people lied
When we went out to The Pile, initially all we got was a Home Depot-type dust mask. Eventually, they gave us sturdier ones. I worked there from 9/11 until May as an EMS lieutenant and put in well over 100 hours.

Two years later, in March 2004, I had my first real asthma attack. That same month, I was forced into the process of retirement.

Christie Whitman's EPA people lied: They said the air was safe. Eventually, I got three-quarters disability, but the city had played these little technicalities. The lawyer for the city said that because the department hadn't filed a form, there was no proof that the accident I was claiming for had actually occurred. The judge had to instruct the lawyer for the city that it can be taken for a given that 9/11 had happened. Because I did my duty on 9/11 and in the recovery operations, I'm now totally and permanently disabled.


William Gleeson, 45, Hicksville, L.I.
An incurable disease
On 9/11, I was a captain in the NYPD. I was home with my family when the attack came, and as the first tower fell, I left my pregnant wife and 3-year-old daughter. Both cried, pleading for me not to leave. I went with only one request to the city: Take care of my family.

I retired in 2004 at the age of 42, believing myself healthy. Within nine months, I was diagnosed with multiple myeloma, which is caused by asbestos, smoldering steel and benzene, all present at Ground Zero. Since then, most of my time has been spent at Sloan-Kettering, getting stem-cell transplants and chemotherapy. And now, after 20 years of service, I'm left with a half-pay pension and little more than an incurable, life-threatening disease and partial paralysis in both hands. Yet not a single city, state or federal agency will acknowledge the air at Ground Zero might be a problem.


Patrick DeSarlo, 44, New City, N.Y.
Forgotten
I volunteered first from the Red Cross then later on with the Salvation Army, working 12-hour shifts with no protection. While most of my duties left me inside, I was exposed to the air going between buildings and as I brought coffee and warm clothes to the men on The Pile.

Ever since, I've had chronic sinus infections, and many other volunteers have worse. We weren't paid workers, so we can't retire or go on disability, and there's no way to pay our medical bills. We gladly did what we did - but we are now forgotten.

CANCER HITS 283 RESCUERS OF 9/11

Since 9/11, 283 World Trade Center rescue and recovery workers have been diagnosed with cancer, and 33 of them have died of cancer, says a lawyer for the ailing responders.
David Worby, a lawyer for 8,000 World Trade Center responders, including cops, firefighters and construction workers, said the cases include blood-cell cancers such as leukemia, lymphoma, Hodgkin's and myeloma.

Doctors say the cancers can strike three to five years after exposure to toxins such as benzene, a cancer-causing chemical that permeated the WTC site from burning jet fuel. "One in 150,000 white males under 40 would normally get the type of acute white blood-cell cancer that strikes a healthy detective," said Worby, whose first client was NYPD narcotics cop John Walcott, now 41. Walcott spent months at Ground Zero and the Fresh Kills landfill. The father of three is fighting leukemia.

"We have nearly 35 of these cancers in the family of 50,000 Ground Zero workers. The odds of that occurring are one in hundreds of millions," Worby said.
Others suffer tumors of the tongue, throat, testicles, breast, bladder, kidney, colon, intestines, and lung, said Worby, of Worby, Groner, Edelman, & Napoli, Bern, which filed the class-action suit.

WTC workers who have died of cancer include paramedic Deborah Reeve, 41 (mesothelioma); NYPD Officer Ronald Weintraub, 43 (bile-duct cancer); and Stephen "Rak" Yurek, 46, a Port Authority emergency technician (brain cancer). The families say they were healthy before 9/11.
Dr. Robin Herbert, a director of WTC medical monitoring at Mount Sinai Hospital, said some of the nearly 16,000 responders screened to date are getting cancer.
"We do not know at this point if they are WTC-related, but some are unusual cancers we see as red flags," Herbert said.

Dr. Iris Udasin, principal investigator for the Mount Sinai screening of 500 in New Jersey, said the 9/11 link is "certainly a possibility," she said. "It's what we worry about, and what we fear."

susan.edelman@nypost.com

http://www.nypost.com/news/regionalnews/cancer_hits_283_rescuers_of_9_11_regionalnews_susan_edelman.htm

Website Lauch - The Meso Foundation

Another email sent out regarding the positive changes happening at The Foundation!

It is with great excitement that we announce the launch of the Foundation's new website. This new site is a virtual resource center designed to be an interactive tool for the meso community – supplying the latest information about mesothelioma, offering resources and support, and connecting community members with each other.

We hope that you will take full advantage of all the tools that the site has to offer. • The Meso Community Bulletin Board is the perfect place to connect with other patients and family members, share information, get expert advice, and offer support.

• The Archives host a vast document library that is fully searchable, and you can submit documents and articles you feel should be a part of the archive so that we can maintain a library that is up-to-date and relevant.

• You will also find other resources such as information on the leading meso medical specialists, and current clinical trials.

As a community we are not alone – we are strong – and we will continue to work until we have eradicated this cruel disease!

To visit the site now, click here: www.curemeso.org Should you have comments, questions, or suggestions we want to hear from you. You can email the Foundation at info@marf.org or call and speak with any Foundation staff member at: (805) 563.8400.

Yours in the fight,
Rob Grayson Director of Development

LAST GASP

Ground Zero volunteers suffer in silence as the clock ticks on their health
By Sushil Cheema

Come here today and see groups of smiling tourists snap pictures of the scene and of each other. Buy postcards and trinkets from street hawkers. Read about the site’s history on signs attached high up on the fence that surrounds the site.

Come here today and close your eyes. Take a deep breath. On a breezy day, dust from the nearby construction might hang in the air. But the air is clear—clearer than it was for months on end, just a few years ago. Just as the surrounding sites are starkly different from the death and destruction that has marked the area forever, the air too has changed, It’s no longer thick with dust, fumes and debris—that filled the lungs of John Feal, John Sfezaro, Scott Aline, Jack Saltarella, Jim LaPenna and thousands of other recovery workers, cleanup workers and volunteers who toiled here in the days and months following the terrorist attacks that occurred on September 11, 2001.

Today this place is known as Ground Zero, or the World Trade Center Site, but to the first responders who inhaled the devastation and picked through ruined buildings and bodies, it is still known as “the pile” or “the pit.” The weeks and months they spent here have resulted in drastic changes in their lives, and, experts say, more remains to be seen.

“Everything was a dust, like a fine powder,” says 66-year-old Saltarella, a former tugboat operator who worked at the Fresh Kills site in Staten Island where debris was taken and deposited. “It was like working in the thickest fog you could imagine in your life.” The lack of protection provided frustrates him and many of his fellow rescue workers most. “For two months they refused to give us any masks.” He pauses and coughs—a distinctive cough. The World Trade Center cough.

From sleep apnea to severe depression, these men and women are undergoing a host of health problems presumably related to their rescue work. But in the nearly five years since the attacks, they have faced numerous obstacles in their quest to obtain workers’ compensation and other benefits.

Last Monday, just three days before construction began on the World Trade Center Memorial and less than a month before the fifth anniversary of the attacks, Governor George Pataki signed into law bills that acknowledge the plight of the first responders. One new law gives those responders who may die from illnesses related to the attacks the same benefits as those who died during the attacks. A second law allows individuals whose illnesses emerged after the two-year deadline the opportunity to reapply for workers’ compensation benefits. Now, workers and volunteers have two years from the time at which their illness emerges to file. A third, final law allows those who have retired to change their pension status to that of accidental disability should a 9/11-related illness emerge after they have stopped working.

Though Pataki’s new laws are welcomed by responders and volunteers, many hurdles still remain. And, many responders say, that these changes may still not be enough to help them.
“It’s a step in the right direction, but it’s five years too late,” says John Feal of Pataki’s new laws. “It should have been three or four years ago.” Though he has respiratory trouble, and deep breathes permeate his sentences, passion for his work easily rouses Feal. “As a country, we took one on the chin and moved forward, and that’s great. But we left 40,000 people who are sick.”

Feal, 39, is the founder and president of The FealGood Foundation, a non-profit dedicated to promoting the plight of sick and injured first responders and to providing volunteers and recovery workers with financial assistance. A foot injury sustained during the recovery efforts led to gangrene and the subsequent loss of part of that foot, and he says he has had thirty subsequent surgeries. Among his other afflictions stemming from his work at Ground Zero, Feal suffers from acid reflux, a scarred lung and asthma. When he speaks, he gasps for air as though he has just finished a sprint. “Excuse me, I get out of breath sometimes,” he says. Feal claims he is also very compulsive now. “I will count the ceiling tiles and say you have 41 tiles,” he explains. Feal says such behavior has its roots in his military experience and in growing up in a strict family. “But now it’s at another level.”

Feal questions Pataki’s motivations for signing the legislation last week. “Part of me believes it’s because he is running for President.” The $50 million being used for the first responders, he says, will not be enough money to help the thousands of sick and injured who need help. “It’s political breadcrumbs,” he says. Feal also worries about the amount of time the filing process will take before individuals begin to actually receive the financial help they need. “These 9/11 responders don’t have years,” he says. “They need help now.”

“I thank God every day,” says Scott Aline, a crane operator who worked at Ground Zero, of Pataki’s new legislation. “There was a window. The window was closed to us.” He understands, however, that there is a caveat to the good news. “Who knows how many years it’s going to be once we get the money?” he asks. “My lungs are already aged,” he adds. According to a recent medical screening, his 45-year-old’s lungs are equivalent to those of a 59-year-old’s. “What’s going to happen when I’m 50?” The news of his lung condition has him worried about the future. “I’m scared,” he says.

Aline also suffers from posttraumatic stress disorder (PTSD), nightmares and sweats. “I worked for two or three months, 12 hours a day, seven days a week.” The pile, he says, was so hot it melted several pairs of work boots. “We’re the ones that found the bodies,” he says of himself and his fellow first responders. “Vietnam was a party compared to what was down there.”

Today, Aline is unable to continue the work on which he was weaned—his father owned a rigging and excavation business. “I can’t work. I’m on a lot of medications. I would be a danger to operate the cranes.” Aline says he has not yet received any funding or workers’ compensation to help him pay his medical bills. Only recently did he begin to be reimbursed for the money he has spent on multiple medications.

Other recovery workers, cleanup crews and volunteers who worked at Ground Zero also have a litany of health problems, some more serious than the ones that Feal and Aline currently suffer. David Worby, a lawyer based in White Plains, is representing more than 8,000 people in a lawsuit against New York City for failing to protect the rescue workers and volunteers adequately from the toxins in the air. His clients are scattered across the country, among them are those scores of independent volunteers who came to New York City to assist in rescue efforts. And, he says, more sick responders call his office every day. “I’ve had about 100 phone calls in the last 36 hours,” he says. Of all his clients in the two-and-a-half-year-old case, Worby says 60 have died. “They have died from causes that were 9/11 related,” he says. Among the illnesses are leukemia and other cancers.

Suzanne Mattei, an attorney who currently works as the head of the national field office of the environmental group the Sierra Club, has been a leading force in the fight to address the plight of 9/11 rescue workers. In 2004, she wrote “Air Pollution and Deception at Ground Zero,” a Sierra Club report that states, “...if our federal government had responded to the disaster with proper vigilance for people’s health, many toxic exposures could have been avoided.” This report embodies the retaliation against Christine Whitman, the head of the Environmental Protection Agency at the time of the attacks who has since resigned, and her declaration that the air in Lower Manhattan was “safe to breathe” just one week after the World Trade Center buildings came down. Largely because of such reassurances from government officials, most rescue workers and volunteers working on the pile did not have air masks to help filter out toxins from the air they were breathing. Some had surgical masks or painter’s masks but most had nothing at all.

The treatment of 9/11 first responders has included a number of hurdles. In preparing the 2006 budget, President Bush had originally planned to eliminate $125 million in federal funding allocated for the responders. In December, the House restored those funds. Representative Carolyn B. Maloney (D-Manhattan, Queens) was a driving force behind that decision. The day after the reimplementation, Maloney’s office issued a press release explaining how the funds would help the workers and volunteers. “The bill approved last night restores the $125 million, directing $50 million to the New York State Uninsured Employers Fund to reimburse workers’ compensation claims and $75 million to the Centers for Disease Control to screen, examine, monitor and…treat sick and injured 9/11 responders.”

In April, the Center for Disease Control (CDC) issued a report confirming that the World Trade Center attacks resulted in subsequent respiratory diseases and mental distress for survivors and workers at the site. According to Maloney, everyone—from volunteers to schoolchildren—exposed to the toxins in Lower Manhattan for extended periods of time should be “monitored and treated.” Though the $125 million has been restored, Maloney was quick to point out in a telephone conversation last week that the use of the money has been slow. “To this day, not a dollar has been spent on treatment,” she says. “Those who rushed down selflessly to help other people, we need to help them.”

Though happy about the new laws Pataki has implemented, Mattei believes responders still face hurdles in getting their compensation. “Anyone who wants to do this has only one year—until August 14, 2007—to get a special form from the Worker’s Compensation Board and swear they were rescue, recovery or cleanup workers,” she explains. “A lot of people won’t know about that deadline. How would they find out?” She points out that media coverage of the new laws did not mention specifics about the process by which rescue workers should go about getting compensation. “The bill won’t accomplish it’s purpose if it’s not publicized.”

Cheryl Wood, General Counsel for the New York State Workers’ Compensation Board, explains the details of the filing process. “There is no requirement that you have to have spent a certain amount of time [participating in the recovery process],” she says. “If you are injured or ill now because of the rescue or recovery process, you can apply for the workers’ compensation.”
Mattei also notes that some individuals have not yet begun to see their illnesses. “The reality is if a worker is not suffering health effects right now, they are not paying attention,” she says. “They don’t know there is a heart condition or a cancerous condition developing in their bodies.” In fact, many illnesses, physical and mental, related to 9/11 do not show up for years. Posttraumatic stress disorder, for example, can take anywhere from five to 20 years to manifest.

Jim Lapenna, an electrician based in Middletown, New York, is one person who has no faith in the government’s willingness to help him. On September 11, 2001, he left his work site at the Palisades Center near the Tappanzee Bridge and drove to Lower Manhattan as soon as he heard about the first plane’s collision with the North Tower. Lapenna was one of the volunteers who assisted in the rescue of John McLoughlin and Will Jimeno—the characters central to the plot of Oliver Stone’s film World Trade Center. Lapenna worked at the site for 14 consecutive days, helping in the search and rescue process. Because he left his work site at the Palisades Center, he says, he was fired from his job. After taking on a new job at St. Luke’s Hospital in Newburgh, Lapenna says he began to develop respiratory problems, PTSD, dizzy spells and headaches, among other ailments suffered by many other responders. As a new hire at the hospital, he was inelligible for an extended leave of absence. Unable to continue working, the hospital fired him after a year of service.

Bills, including medical ones, began to add up, Lapenna says. “I had to work to make ends meet,” he says. Subsequently, he began to work on his own. In addition to his early ailments, Lapenna today suffers from blurred vision and anxiety. “There’s days I have to come home early because I just can’t do it anymore,” the 51-year-old father of three says. “Everything is out of whack.” He talks about his life prior to the attacks as full of physical activity. He would train and coach his sons’ soccer teams, he says. But now, “I can’t do nearly what I used to do. The whole thing is frustrating.”

Lapenna went to Ground Zero on his own accord. “No one had a table that said ‘Sign up here,’” he recalls. Though there is no written documentation to prove he volunteered at the site, Lapenna has photographic evidence. A photograph in TIME magazine’s special issue released just days after the attacks shows Lapenna—dressed in a short-sleeved black polo shirt and wearing a surgical mask—in the middle of a throng of firefighters and other rescue workers. In addition, he says he still has the clothes he wore during his time at the site in storage. “I should probably get rid of those,” he says, “but my kids want me to keep them.”

Kim Mann helps Lapenna with day-to-day business duties like bookkeeping, and she is very concerned about the volunteers like Lapenna who volunteered at Ground Zero on their own, not affiliated with an organization like the Red Cross or the Salvation Army. “The one’s who came on their own are on their own,” she says. The frustration comes out in the tone of Lapenna’s voice. “When people ask me who my employer is,” he says of his attempts to file for worker’s compensation and other aid, “I say, ‘God.’ And when people ask me how they know I was down there, I say, ‘You don’t know.’” Despite Pataki’s new laws, Lapenna believes he is on his own just as Mann feared.

Wood says that individuals in Lapenna’s situation should still file for compensation. “I would tell anyone to file a claim,” she says, including private sector employees and independent volunteers. “They will look at it and ask questions to establish the relevancy. Every claim will have to show medical evidence that the illness is related to work at Ground Zero.” Mattei notes that people submit a variety of forms of evidence, from paperwork to photographs to witness accounts.

Mattei points out other problems with the new legislation. She comments that it does not acknowledge that an illness stems from a responder’s work at Ground Zero. “The issue of an illness being caused by pollution exposure is a very difficult thing to prove,” she explains, despite the number of volunteers and rescue workers developing debilitating—even fatal—diseases.

Responders and advocates are not the only one’s who are skeptical about the effects of Pataki’s laws. Mayor Bloomberg has spoken out against the governor’s move, but for very different reasons. Bloomberg has publicly stated that he thinks the new law is fiscally irresponsible. In regards to line-of-duty death benefits, he demands that a direct connection between a responder’s illness and his or her work at Ground Zero be proven beyond a doubt. “You can take your insurance company and payout all billion dollars now,” Bloomberg said at a press conference on Tuesday, August 15. “What do we do in ten years when people come down with a disease that you could show was connected to the service that they provided on 9/11? We have a responsibility to them to make sure there are resources available for that.” Bloomberg’s contribution to the fight against tobacco infuriated many first responders, including Feal. “Bloomberg can donate money to fight cigarettes. They cause cancer, but 9/11 caused cancer, too,” he says. “I went to 9/11 university and I’ve got a five year degree now,” he says of his experiences. “It’s a crime that [Bloomberg] says he can’t see enough evidence of illness.” He adds, “I’d like to take my good foot…and put it in his mayorial ass! That’s not a very good leader in my mind.”

Despite his difficulties, Feal maintains a sense of humor. “This is why I act like a clown when no one’s around. Because if I didn’t have a sense of humor about this I would have killed myself by now.” And he takes great pride in helping other first responders. “These people risked their lives with no prejudice.” He devotes himself fully to his efforts. “I’ll go weeks without utilities, days without food,” he says. “Their suffering is my strength.”

John Sferazo is president of the Unsung Heroes helping heroes. His experiences as a rescue worker were similarly traumatic. “There were things that we did there and stuff that we found that I don’t even want to talk about,” he says between heavy breaths. While post-9/11 daily life is forever altered by new illnesses, Sfezaro and the other responders do not regret having volunteered and worked at Ground Zero. “Everybody assumed there would be plenty of opportunities to help and look for survivors and that was my main contention.”

Though they feel abandoned by the state and the federal government, these first responders and volunteers continue their fight. And they look to themselves for solidarity and hope. “9/11 responders are going to help themselves,” says Feal. “With a little grassroots movement, we are going to be all right.”

http://www.nypress.com/19/34/news&columns/feature.cfm

Check number 3 on the way!

Thanks to all of you!

So far our organization cumulatively donated $550. Thank you for all your support and we hope to bring in more donations to the Meso Foundation in the upcoming season!