Sept. 11, 2012 -- The World Trade Center Health Program will now provide treatment and compensation for first responders from 9/11 victims who were diagnosed with cancer after inhaling toxic dust at Ground Zero, program administrator Dr. John Howard announced Monday. But many first responders say they consider the expansion bittersweet.
Cancer had not previously been part of the James Zadroga 9/11 Health and Compensation Act, which set aside $4.3 billion to treat and otherwise compensate 9/11 victims. It included asthma, carpal tunnel syndrome and lower back pain, but not cancers because the cancer link to the dust cloud and debris that hung over lower Manhattan was unclear.
"They're only about ten years too late," said Jeffrey Stroehlein, who retired from the New York Fire Department in May 2011, two months after he was diagnosed with a type of brain cancer that affects the central nervous system. "I'm watching people die of these diseases, these ailments, as they go on and play ping pong," he said of government officials arguing over whether cancer should be included in Zadroga Act coverage.
Stroehlein began having headaches nearly ten years after he worked at Ground Zero, clearing debris with the rest of the first responders after the terrorist attack on September 11, 2001. He was diagnosed with cancer in March 2011, and underwent chemotherapy every other week for 14 weeks, followed by an intense 8-day round of chemo.
"It's kind of scary I was one of the lucky ones," he said.
Stroehlein said his highest cancer-related bill to date was more than $220,000, and he couldn't imagine what a first responder would do without good health coverage, which he was fortunate enough to have. But the Zadroga Act would not have been able to pay for his treatment because cancer wasn't covered.
Stroehlein's last four MRIs have shown no signs of the cancer, but he doesn't like to use the phrase "cancer-free."
"I'm just a piece of the puzzle, one of thousands of first responders," he said, adding that he thinks some people probably had to foreclose on their homes to pay for cancer treatment. "Who's going to get your house back? ... Most people don't have that money lying around."
Tom Neal, a now-retired New York Police Department detective, says he's lucky his wife convinced him to purchase a smart health care plan, which covered the doctors he needed to treat his cancer. "I may be the president of the house, but my wife is the CEO."
Neal worked on the first floor of police headquarters in downtown Manhattan on 9/11. He said he heard an early bulletin about the attack on the radio and was able see the first World Trade Center tower on fire from the back of the NYPD building. And then there was the dust cloud that included asbestos, lead, glass, metal and other toxins.
"People were coming back to the headquarters, and it was all throughout the building and on all the floors," he said of the dust.
Neal said NYPD headquarters' air conditioning and heating system vents weren't cleaned until 2005, so while he sat at his desk processing DNA to help identify victims, he was breathing in carcinogens for years. He began having sinus and breathing problems as early as 2002, and doctors found a tumor in 2010 between his eyes that grew into the frontal lobe of his brain.
He said he'd had several previous injuries covered by Worker's Compensation, but he had to get cancer treatment under his own healthcare plan. He went to a World Trade Center Health Program center for an initial exam, but they said he couldn't get treatment because he had cancer. Instead, he had to battle with insurance companies and stress about bills and staying within his health insurance company's network.
"It's not about the money," Neal said. "It's about the agencies and the companies that should stand up for their employees and take care of them."
After several surgeries and treatments, he says he's doing "really well" but battling some side effects of radiation.
He said he's optimistic about the Zadroga Act Expansion, but also frustrated by the slow response because he thinks agencies -- not the individual doctors -- have been "discriminating" against those with certain illnesses.
He said he only personally knows one other officer who was diagnosed with cancer after the World Trade Center attack -- and that person sat at his old desk on the first floor and died of the same kind of cancer he had.
"Two people work in one special room in One Police Plaza got the rarest form of cancer," he said. "That can't be coincidental."
And doctors say it probably isn't.
Oladele Ogunseitan said the government's announcement -- the first acknowledgement linking the toxic dust to cancer -- wouldn't surprise his colleagues because asbestos was in the World Trade Center and is a known carcinogen. Ogunseitan chairs the Department of Population Health and Disease Prevention at the University of California, Irvine.
"The World Trade Center building was constructed at a time that asbestos was used in building materials," he said. "By some estimates, 400 tons of asbestos was used in the building, and asbestos-containing fire retardant was used up to the 64th floor of the building."
Ogunseitan attributed the government's lag time to litigation, and said assessing the chemical composition of airborne debris immediately could have led to cancer-preventative measures.
"Knowing sooner might have helped in people's planning to some extent," Ogunseitan said. "[It] would potentially increase life expectancy and delay disease."
Dr. Anthony Robbins, who co-edits the Journal of Public Health Policy, said a latent period between exposure and cancer development -- like what Stroehlein and Neal experienced -- is to be expected. Leukemia develops first, after about 10 years, and mesothelioma can take up to 40 years to appear.
Overall, about 40,000 Sept. 11 responders and survivors receive monitoring and 20,000 get treatment for their illnesses as part of the Zadroga Act's health program. The FealGood Foundation, founded by first responder John Feal, lists 341 9/11-related cancer deaths to date among first responders.
And as more cancer victims come forward, advocates say the value of the fund and the length of time it will be available must be expanded. Right now, it will only last through 2016.
"It means a great deal to men and women knowing they can go to treatment facilities and get medical care for free," said Sean Riordan of the FealGood Foundation. "It's a bittersweet victory because these men and women will have their cancers regarded as caused by the work they did at ground zero, but there is now a greater pool to share in the same pot."
Dr. Heather Hawthorn, a resident in the ABC News Medical Unit, contributed reporting.