Fifteen years after 9/11, illnesses compound for first responders

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By Sam Weber and Laura Fong

When Ken George was sent to the site of the World Trade Center after the attack on Sept. 11, 2001, he thought he was going to be directing traffic.

George worked for the New York City Department of Transportation, but when he arrived at the site that first night, he was quickly put to work sorting through and removing debris, including human remains.

“That psychologically took a toll on me,” he said. “I wasn’t trained for none of that stuff.”

But it wasn’t just mental stress. Over the next several months, George worked 750 hours at the site, where he was exposed to airborne toxins and dust and rarely wore a mask to cover his face.

Today, George is one of many first responders still dealing with the long-term health effects, both physical and mental, of having been a first responder at the World Trade Center. He has been diagnosed with a myriad of respiratory illnesses, but also post-traumatic stress disorder. Sometimes he has difficulty even leaving the house.

“I did everything and I was perfect. Now I can’t do anything, nothing at all. I can’t breathe,” George said. “I know my life is cut short big time.”

George’s health care for the illnesses connected to exposure at ground zero is covered by the World Trade Center Health Program, which was created by Congress nearly a decade after the attacks. But making the link between exposure and health effect can be a difficult task.

“What we look for is signals,” Dr. John Howard, the administrator of the WTC Health Program, said. “We look for small indicators that there may be something that can relate between the exposures and the health effects.”

When the law that created the WTC Health Program was passed in 2011, about two dozen illnesses were on the list of covered conditions, including common ailments in responders like asthma and PTSD. Since then, the program has added new diseases, including more than 50 types of cancer, but some responders would like to see more conditions on the list.

John Coughlin was an NYPD Officer in 2001 who helped with search and rescue efforts at the World Trade Center site. He has several conditions covered by the World Trade Center Health Program, but also suffers from neuropathy, a pain and numbness in the hands and feet that he believes was caused by exposure to toxic dust.

“I know there’s a procedure, but people are out there suffering, and dealing with these issues and not getting the treatment that they need or require,” he says.

Howard is left to balancing the needs of responders with the WTC Health Program’s requirements.

“I’d very much like to cover your condition but I need some sort of evidence to be able to show the connection,” he said. “Having spoken to many, many responders who have conditions that we do not cover, this is a very difficult thing for [those] who are suffering from those conditions.”

Read the full transcript below.

KARLA MURTHY: In his home on Long Island, an hour from New York City, Ken George keeps a box of mementos from his time as a first responder to the September 1tth terrorist attack on the World Trade Center.

KEN GEORGE: First night I was there I was walking there and I took pictures. My eyes were burning, man the smell was unbearable. That’s all the ash, and it’s like papers flying in front of you that you can actually touch.

KARLA MURTHY: In 2001, George worked for the New York City Department of Transportation, which sent him to ground zero. He wears sunglasses for sensitivity to light.

KEN GEORGE: I thought I was going to be like blocking traffic. For the first couple of hours, I was on bucket brigade, passing buckets around, stuff like that.

KARLA MURTHY: Removing debris?

KEN GEORGE: Yeah, debris, or whatever we found. I wound up stepping on, I say a torso, part of a torso.

KARLA MURTHY: So you were finding body parts?

KEN GEORGE: A lot. A lot of body parts.

KARLA MURTHY: George worked 750 hours on site, exposed to airborne toxins and dust, rarely wearing a mask over his face. He developed a bad cough, and his doctor diagnosed him with asthma.

KEN GEORGE: I never smoked, I never had nothing, so he gave me all these asthma medications, and cough medications.

KARLA MURTHY: Were you thinking at that time how this was going to affect your physical health?

KEN GEORGE: No, never thought that once,

KARLA MURTHY: In the years after 9/11, George’s respiratory issues worsened. Doctors diagnosed him with restricted airway disease and put him on dozens more medications.

For his illnesses connected to exposure at ground zero, George doesn’t have to pay for his care. It’s covered by the World Trade Center Health Program, with more than $6 billion allocated through 2025. The program was established in 2011 by the James Zadroga Health and Compensation Act. It’s named after an NYPD detective who died in 2006 from respiratory disease after working as a first responder. In December, the law was reauthorized by Congress for 75 years to cover the lifetime of responders.

DR. JOHN HOWARD: I think they were trying to show and the American people were trying to show, gratitude for what these responders did.

KARLA MURTHY: Dr. John Howard is the director of the National Institute for Occupational Safety and Health, known as NIOSH. It administers the WTC Health Program, which provides care for nearly 75,000 responders, survivors, and residents. It also determines what conditions are connected to 9/11 exposures.

DR. JOHN HOWARD: When you think about the amount of dust containing all of these various carcinogens that these thousands of individuals breathed it makes scientific sense that this could damage the body.

KARLA MURTHY: Today, at 52, George’s health issues make it difficult for him to leave home. He retired from the Department of Transportation in 2006.

KEN GEORGE: I worked at a blacksmith shop, welding shop, I ripped up the roads, I did everything, everything, and I was perfect. Now I can’t do anything, nothing at all. I can’t breathe. I know my life is cut short big time.

KARLA MURTHY: But George isn’t just suffering physically. He also suffers psychologically from working on a site where nearly 3,000 people were killed. He was diagnosed with post-traumatic stress disorder, or PTSD,

KEN GEORGE: I was waking up in the middle of the night screaming, I was punching the walls, my temper was flying off the wall, for no reason, and I’m not that way.

KARLA MURTHY: In the past 15 years, as many as one-fifth of World Trade Center recovery workers, like George — city employees, construction workers, and police — have experienced this combination of mental and physical symptoms.

Dr. Benjamin Luft heads the Stony Brook World Trade Center Wellness Program and has been studying the interaction between physical and mental symptoms among responders.

DR. BENJAMIN LUFT: This was a very unique event in that the level of trauma that were occurring concurrently in – the mind and the body – they occurred at the same time in the same person.

KARLA MURTHY: Stony Brook researchers found that responders with PTSD symptoms are twice as likely to develop respiratory issues. And are nearly three times as likely to experience cognitive impairment compared to responders without PTSD.

In a study now underway, responders filled out surveys every five hours for a week about their PTSD symptoms and supplied biological samples.

RACHEL ROGERS: They would put this in between their gum and their tooth there, and collect as much saliva on here as possible.

KARLA MURTHY: A goal of the research is to see how PTSD might impact other parts of the body.

DR. BENJAMIN LUFT: Some of these things, like chronic stress, may cause cardiac disease. There’s some data to suggest it may even potentiate the development of cancers. It’s not that these are in your mind, as they say, it’s that there are actual biological materials that are being produced, which potentiate a whole bunch of physical problems.

KARLA MURTHY: NIOSH has funded nearly $75 million of research on the health effects of the WTC attacks since 2010, including the research at Stony Brook. NIOSH relies on research to determine what illnesses should be covered by the WTC Health Program.

DR. JOHN HOWARD: To make the link between exposure and a health effect is a very difficult thing. When the Congress passed the James Zadroga Act they said figure out whether that exposure aggravated, contributed to or caused that particular health effect so that’s a burden on the program.

KARLA MURTHY: When the law was originally passed, the WTC Health Program designated about two dozen illnesses that would be covered, including asthma, sinus infections, and PTSD. But not every condition many first responders experience is on the list… like neuropathy, a pain and numbness in the hands and feet.

John Coughlin has that. A volunteer firefighter in Deer Park on Long Island, he was a New York City Police officer on 9/11 and assisted with search and rescue at ground zero.

JOHN COUGHLIN: This is our 9/11 memorial over here.

KARLA MURTHY: He worked at the site frequently until he retired from the NYPD in 2002. At the time, he had a clean bill of health, but as the years went by he developed respiratory problems, underwent open heart surgery, and started to experience PTSD.

JOHN COUGHLIN: I may look good on the outside, but inside, me personally, I’m like a broken bottle. I just hide it well.

KARLA MURTHY: In 2007, he began experiencing symptoms of neuropathy.

JOHN COUGHLIN: Your feet feel like you’re walking in sand all the time, okay, and for me, from the lower knee down to my feet, and my fingers, and my arms get numb, but my feet, the worst. Even walking sometimes is painful.

KARLA MURTHY: Dr. Marc Wilkenfeld, an occupational physician at Winthrop University Hospital in New York, treats patients for the WTC Health Program.

DR. MARC WILKENFELD: If a patient comes to see me in my office with neuropathy, I can’t treat it under the program. It’s not covered by the government.

KARLA MURTHY: In the last several years, he has started to notice more patients reporting neuropathy symptoms.

DR. MARC WILKENFELD: People started coming in, and they’d be coming for their asthma, you know, something that’s covered. And then a few times someone would say to me as an afterthought, “Oh by the way, I get this strange tingling in my feet,” or, “I’m having weakness in my hands. You think it’s related?”

KARLA MURTHY: In 2014, Dr. Wilkenfeld decided to test his hunch that neuropathy might be related to the toxic dust at ground zero.

KARLA MURTHY: His first study looked at exposure to WTC dust in rats. Then, in a study based on surveys of first responders published in January, Wilkenfeld found responders were 15 times more likely to have symptoms of neuropathy than non-responders.

Do you feel that you have enough evidence right now that does prove that there’s a link?

DR. MARC WILKENFELD: Without question. If there’s a small doubt, I would think you would give these people the benefit of the doubt.

KARLA MURTHY: In April, the WTC program rejected a petition to cover neuropathy, criticizing Wilkenfeld’s study of responders for having “self-reported… data” and a “small sample size.”

DR. JOHN HOWARD: A lot of petitions that we get that don’t make it the first round, we hope that we’ll see additional studies. So we hope that researcher will then be able to give us a second study, maybe including a larger number of people, maybe another researcher will be able to corroborate. So I think it’s a difficult area, and I think, having spoken to many, many responders who have conditions that we do not cover, this is a very difficult thing.

KARLA MURTHY: Dr. Wilkenfeld is working on follow-up studies, but meanwhile first responder John Coughlin waits.

JOHN COUHGLIN: I know there’s a procedure but people are out there suffering, and dealing with these issues, and they’re not getting the treatment that they need, or require,

KARLA MURTHY: Since 2011, the conditions covered by WTC Health Program have expanded, including prostate and dozens of other kinds of cancers.

How can you be sure that a responder’s cancer is linked to their exposure at the World Trade Center site?

DR. JOHN HOWARD: We can’t be sure. So what we look for are small signals. Is this particular cancer more common, is there any kind of a signal that it’s more common in our 9/11 exposed population than it is in the general population?

KARLA MURTHY: For Michael Shea and his wife Ingrid, having cancer treatment covered for responders is a huge relief.

Last year, Shea was diagnosed with terminal brain cancer. A Nassau County police officer, he had spent about 50 hours at ground zero helping secure the area immediately after the attack.

KARLA MURTHY: So up until the point though that you got cancer, you were perfectly fine and healthy?

MICHAEL SHEA: Yes. Nothing. This is the only time I ever had any type of medical condition.

KARLA MURTHY: After months of chemotherapy and brain surgery, Shea’s ability to walk, talk, and remember things has diminished.

INGRID SHEA: Next one, your favorite…

MICHAEL SHEA: Ice Cream.

INGRID SHEA: Very good!

KARLA MURTHY: Ingrid has become his primary caregiver.

INGRID SHEA: How did he get it from the World Trade Center. Was it the dust, or was it something he touched. Nobody knows.

KARLA MURTHY: Do you have any doubts that his cancer is linked to the World Trade Center?

INGRID SHEA: I really don’t know the answer to that, but they say it is.

KARLA MURTHY: Shea is now one of 5400 people whose cancer treatment is covered by the WTC Health Program.

KARLA MURTHY: It’s a lot you’re going through…

INGRID SHEA: Every day. It’s all a job, to make his life easier. He’s my priority. Right, baby?

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