As 9/11 Responders Battle Cancer, They Also Battle a Looming End to Compensation

This story is part of a partnership between MedPage Today and VICE News.

Ray Pfeifer never finished the Tuesday-morning round of golf he was playing with a few other off-duty New York City firefighters. Because while they were on the course, they learned the first plane had hit the World Trade Center.

"We got in the car and went back, right to the firehouse, grabbed our gear, and went downtown," Pfeifer, now 58, told VICE News. He was a member of FDNY Engine 40, Ladder 35, which is based near Lincoln Center on the Upper West Side, several miles north of Ground Zero.

"I just remember pulling up and seeing hundreds of pairs of shoes," he said, pausing at the memory. The air was thick with smoke and debris; Pfeifer was told to get out of the way just minutes before Building 7 fell.

"You really couldn't see anything even though it was a beautiful day," he went on. "The fire was burning, dust was being kicked up. It was just a mad house."

Officials later said that the debris cloud was visible from space, and when it settled, there was a layer of dust up to three inches thick that remained on surfaces and crept into apartments and office buildings, according to a 2011 report by the US Geological Survey (USGS).

Pfeifer and his men dug through the debris all night hoping to find survivors, armed with flashlights and a few buckets. They didn't find anyone.

Pfeifer worked at the site for the next eight months. He said he considered any day he could bring closure to a family a good day. For a while, he slept at the firehouse instead of returning home to his wife and young children.

"I wasn't really home. They didn't understand it," Pfeifer said, calling his wife of 27 years a "saint" for bringing his children into the city to see him. "I kind of lost it a little bit."

When Ground Zero workers tried to wear masks, they filled with dust within minutes, rendering them useless, Pfeifer said. He was soon diagnosed with "9/11 cough," the first of many diagnoses he would receive over the years.

About half a million people were exposed to the cloud, which was made up of pulverized and burning building materials, furniture, computers, and unknown objects, said Dr. Michael Crane, who directs the World Trade Center Health Program Clinical Center at Mount Sinai, which has about 22,000 patients.

"We've never seen it before, and we're never going to see it again, and we don't know what was in it," he said. "That's the scary thing about this exposure."

Scientists collected dust samples soon after the attacks and learned that it contained high amounts of lead, zinc, antimony, and copper, the USGS report said. It also contained asbestos, a known carcinogen.

Related: People Are Still Dying of Cancer Linked to 9/11

Pfeifer had a mostly clean bill of health in the years that followed the terrorist attacks, during which he continued to work for the FDNY. Then, in 2009, he noticed some hip pain and went to New York Presbyterian Hospital. He said he thought they would give him a cortisone shot and send him on his way.

Instead, they found a tumor in his left leg, and determined it was the result of stage IV renal cancer. He had his first surgery 48 hours later.

"Then, it came back and back and back," Pfeifer said.

During the last six years, he's had full hip, femur, and knee replacement surgeries, in addition to surgeries to remove a kidney and tumors. In May 2014, he had a heart attack because the chemotherapy weakened his heart, he said.

Today, he has cancer in his ribs, his lungs, and his lymph nodes.

Despite these ailments, he made his way back downtown last week to stand among fellow responders and survivors a short walk from the 9/11 memorial. Many of them, too, had been battling cancer.

"If it happened today, I'd be hard-pressed to find someone to say they wouldn't do it again," Pfeifer said.

They were there to campaign alongside politicians for a permanent extension of the James Zadroga 9/11 Health and Compensation Act, which became law in January 2011 to cover expenses related to health problems suffered by those who worked at Ground Zero. It was difficult to pass, and when it did, there was a compromise: It would expire in 2016.

"The heroes of 9/11 who fought the flames and inhaled the dust are being forced to wage a battle on two fronts: a fight to survive the illnesses related to their service at Ground Zero, and a fight on Capitol Hill to ensure the health and compensation they rely on don't disappear," US Representative Carolyn Maloney told the crowd as 9/11 responders stood around her.

James Zadroga was an NYPD detective who worked as a rescuer following the attacks; he died in 2006 of respiratory illness at age 34. At the time, his case was controversial. The medical examiner determined that Ground Zero toxins did not cause Zadroga's death, and then-mayor Michael Bloomberg declared in 2007 that Zadroga was not a hero, reported the New York Times.

"We wanted to have a hero and there are plenty of heroes,'' Bloomberg said. ''It's just in this case science says this was not a hero.''

The Zadroga Act didn't pass for another four years.

"You'd think this would be something that everyone in Congress could agree on, but it was difficult," said Ben Chavet, the executive director of 9/11 Health Watch. Chavet helped craft the bill when he was working as chief of staff for Maloney. "The Bush administration opposed the bill. They didn't think that there was a health crisis."

Crane, an occupational health specialist, said that research showed a rise in lymphomas and melanomas among the exposed population as early as 2008. Even though one in three people will get cancer during their lifetimes, it's clear the cancers are linked to exposure to the dust cloud, he said.

"When you start to see things at year seven, that's early for an occupational exposure," he said, explaining that asbestos often has a latency period, meaning it can take between 20 and 40 years for it to cause cancers. "It's pretty big, and it's going to get bigger."

"I've been doing this for 10 years," he continued. "I still don't know exactly what to expect, and I worry about it."

Related: The CIA Just Released Declassified Documents Related to the 9/11 Attack

Soon after Pfeifer took his turn at the microphone at the rally, Joseph Zadroga, James's father, stressed the importance of extending the act indefinitely, aiming his remarks at politicians in Washington who oppose the extension.

"I want to speak to you personally, and let you know what it's like to watch a person die over a five-year period with no support," he said.

Chavet told VICE News that although politicians always say they'll "never forget" the heroism of first responders during and after 9/11, letting the Zadroga Act expire would jeopardize care for the more than 71,000 people enrolled in the World Trade Center Health Program, nearly half of whom already have program-certified illnesses caused by being at Ground Zero.

As of February, the most common certified cancers suffered by people in the program were non-melanoma skin cancer, non-Hodgkin's lymphoma, melanoma, and thyroid cancers, according to a report by the Centers for Disease Control and Prevention.

Pfeifer, who retired a year ago after 27 years on the job, worries about what will happen to him and his family if the extension doesn't pass. Before cancers were added to the list of certified World Trade Center Program ailments in September 2012, he had to go into debt to cover his medical expenses. He said he was lucky to have friends at work who raised enough money for him to cover his bills at a March 2012 fundraiser.

"We beg all the time, that's how I feel," he said. "The federal government said that 'Okay, yes, you are sick, and yes, it came from the toxins that were down there.' Why do I feel like I have to beg to get this extended?"