Government excludes cancer care from Health and Compensation Act
“What the hell?”
Those were the words racing through the mind of Jim LaPenna, an electrician working at the Palisades Center in West Nyack, N.Y., a shopping mall less than 30 miles from Ground Zero, on the morning of Sept. 11, 2001, when he heard what he would soon learn was a plane strike the World Trade Center’s North Tower.
As soon as he heard the news, LaPenna did what he thought any patriotic American would do — he jumped in his car and, despite threats to be fired for leaving his job site, headed toward Lower Manhattan to volunteer with cleanup efforts.
“When that took place, I didn’t think of me. I thought about what I could do to help,” LaPenna said. “Nobody put a gun to my head and told me to go to the [World] Trade Center. I did it because that’s what we do as Americans, that’s what we do as first responders.”
He arrived on the scene shortly thereafter and was a mere 100 yards from the South Tower when it was struck. For the next two weeks, LaPenna volunteered his time in the search and recovery at Ground Zero despite being fired from his electrician job for insubordination.
“I didn’t go home for the first 14 days,” LaPenna recalled. “You slept wherever you could find a place to shut your eyes for a little bit.”
LaPenna was one of five first responders to assist in the recovery of Port Authority police officers John McLoughlin and Will Jimeno in a process he labels as “Life on the Ultimate Team.” Five years later, Oliver Stone released the film World Trade Center, a drama loosely based on the officers’ rescue.
But, similar to the lives of numerous other first responders, the decade since the attacks has been much less “Hollywood” for LaPenna. His long list of post-9/11 medical ailments includes esophageal cancer, asthma, acid reflux, post-traumatic stress disorder, muscle and joint degeneration, blurred vision, difficulty breathing, frequent headaches and dizziness, among others. Internal concussions from when the towers’ collapsed caused two tumors in the frontal lobes of LaPenna’s brain, which doctors have since removed.
“We got the shit kicked out of us,” LaPenna said.
And this is all for a man who, prior to Sept. 11, 2001, ran close to 10 miles a day and coached and played soccer. In addition to his medical ailments, LaPenna has since endured a divorce and countless hours of counseling.
“My whole world has changed,” he said. “My whole life has changed, my whole focus has changed, [and] my whole thinking process has changed.”
The dust clouds surrounding the World Trade Center site were polluted with particles of glass, lead and carcinogens such as asbestos and benzene. Exposure to these toxins through the lungs and skin is directly connected with many respiratory illnesses, yet first responders have been mostly unable to receive sufficient, government-provided health benefits as many struggle to make ends meet due to rising health costs.
On Dec. 22, 2010, first responders enjoyed a brief victory, when Congress finally overcame a Republican filibuster in the Senate to pass the James Zadroga 9/11 Health and Compensation Act. The law was named in honor of James Zadroga, a NYPD officer who died of a respiratory disease in Jan. 2006 linked to his rescue work following 9/11. President Obama signed the bill into law on Jan. 2, 2011, which expanded health monitoring and financial aid available to first responders and exposed civilians by $4.3 billion.
James Ryder, retired 20-year NYPD veteran, first responder and director of political affairs for the FealGood Foundation, a non-profit advocacy organization that works on behalf of first responders, lobbied on behalf of the Zadroga bill in the days leading to its passage. Ryder said the Congressional Budget Office originally recommended a $10 billion proposal, but once it even reached the Senate floor, its price tag was under $8 billion, and the filibuster threat further cut its benefits.
“My fellow Republicans have had issue with the description or the terminology of the compensation,” Ryder said. “It’s important to point out to anybody who will listen that this is not about being the hero, going down to Ground Zero and becoming a patriot, doing what’s right for your country and then going out and buying yourself a Cadillac.”
The Zadroga Act does not provide federal benefits to cancer-stricken responders because, according to a study released earlier this year by the National Institute for Occupational Safety and Health, the agency evaluating what illnesses the Zadroga Act would cover, no definitive connection exists between cancer and dust exposure.
According to a study released by Dr. David Prezant, chief medical officer for the NYFD, however, those exposed to the World Trade Center wreckage are 19 percent more likely to have cancer than those unexposed.
“It’s nowhere near what we need,” Ryder said, referring to the Zadroga Act. “Once we get cancer added to this bill — we are highly confident that we will get it added; it’s just a matter of when — we’re going to need a heck of a lot more money because cancer’s not cheap. It’s evil, it’s violent, it has no clock, and it’s vindictive.”
A nine-year study released this month in the medical journal Lancet by the Mount Sinai Medical Center’s World Trade Center Health Program, created in 2002 to monitor the health of first responders, found disproportionately high rates of asthma, PTSD, depression, sinusitis or sinus inflammation and acid reflux among first responders exposed to the Lower Manhattan dust.
“These men and women risked their lives and their health to support their fellow Americans after the devastation of 9/11,” said Dr. Philip Landrigan, principal investigator of the World Trade Center Program’s Data and Coordinator Center at the Mount Sinai School of Medicine, in a press release accompanying the study’s release. “Now, many of them are riddled with multiple health problems. Our study shows that these diseases may persist for years to come. We should do everything in our power to provide the best long-term care possible to these heroes.”
Troy Rosasco, a metropolitan New York disability attorney who has worked with several first responders on Zadroga Act claims, said the law is divided into two parts. $1.5 billion goes to medical centers across the country that work with affected civilians and first responders to help finance their medical and psychological care. The remaining $2.8 billion will be distributed through a victims’ compensation fund to first responders and civilians in the form of pain and suffering damages, and loss of earnings directly associated with medical ailments stemming from 9/11.
Due to the limited funding made available through the Zadroga Act as well as restrictions that allow only $875 million to be distributed over the first five years, Sheila Birnbaum, special master of the Zadroga Act 9/11 Victim Compensation Fund, has already said she will have to reduce initial awards. Rosasco even speculated that claimants might only be able to receive 20 percent of their full award unless Congress provides additional Zadroga funding. Rosasco insisted there’s not enough money in the fund to fairly compensate all victims.
“Regardless of what the scientists say, we need to go back to Congress, and we need to ask them to think about heroes and to think about how many people are dying almost on a weekly basis [because] they were at the World Trade Center site,” Rosasco said. “I’m not a scientist; most of Congress is not scientists, but they know a wrong when they see it, and they know how to right a wrong.”
Like LaPenna, Ryder did not escape 9/11 unscathed. He has a below average breathing rate, suffers from severe sleep apnea that causes him to wake usually between 70 and 90 times per night, and his heart rate, at an average of 120 beats per minute, far exceeds the 80 beat-per-minute norm. That said, Ryder considers himself one of the lucky ones. He’s seen several colleagues forced to fight cancer in the decade since.
Ryder’s work with the FealGood Foundation has led him to the homes of many first responders who encounter trouble paying for 9/11-associated medical treatment and prescriptions. In one instance, Ryder recalled traveling to the N.J. home of a first responder who couldn’t afford to stock his refrigerator because of healthcare costs. Ryder and the FealGood Foundation assisted with the man’s food costs that day. Two days later, the Foundation helped pay for the man’s funeral.
“There’s more to a first responder than just what you read on paper,” Ryder said. “There’s a human being, there’s a family, there’s a dog, there’s a home, there’s a mortgage, there’s a medical bill and there’s a doctor waiting to cut him open again.”
Since 9/11, LaPenna has also struggled to cover month-to-month rent, utilities and other expenses under the additional weight of rising health care costs. In 10 years, LaPenna, who has no health insurance, has collected a mere $1,600 in health benefits, and he receives some free medical monitoring at Mount Sinai, which receives funding from the federal government. If for nothing else, LaPenna said he would appreciate compensation, so he doesn’t have to constantly worry about covering day-to-day expenses.
“It’s not about money because you’re never going to be able to give me my health back,” LaPenna said. “$1,600 — that doesn’t pay rent or anything — and the sad part of it is I can’t earn the living that I used to earn anymore because of the sicknesses that I have.”
Although his illnesses often prevent him from working to his capability, LaPenna, an electrician now based in Middletown, N.Y., said he generally has no choice but to work almost everyday to sustain himself financially. But even given the difficulties he has endured in the past decade, asked if he ever regrets his decision to jump in his car and drive down to Lower Manhattan that day, LaPenna didn’t hesitate.
“I’d do it all over again,” he said. “I wouldn’t change a thing.”
Patrick Duprey is a junior journalism major who has offered to pay for all needed medical treatments. Contact him at firstname.lastname@example.org.