Health: The Fight For The Health Of 9/11 First Responders

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0:3125 years after the September 11th terror attacks, the help of first responders continues to be affected. 3 ,000 people were killed across three locations during the attacks. An estimated 400 ,000 people were exposed to toxic contaminants and other harms following the attacks. That's according to data from the Centers for Disease Control and Prevention. Since the dust and debris have settled, more than 96 ,000 have been diagnosed with physical and mental health conditions related to 9-11. And newly released documents from the city of New York reveal that contaminants like asbestos were found as much as half a mile away 10 months after the attacks.

1:10That's despite New Yorkers being told the air was safe to breathe at the time. In 2010, President Barack Obama signed the James Zadroga 9-11 Health and Compensation Act, named for an NYPD detective who died from respiratory disease attributed to toxic exposure. The act established the World Trade Center Health Program and reopened the 9-11 Victim Compensation Fund. Today, more than 150 ,000 people are enrolled in the program. But that federal health program wouldn't exist without the advocacy of survivors and first responders who put their bodies and lives on the line following the attacks. I'm Jen White.

1:46You're listening to the 1A Podcast. We'll be back with more after this short break. Stay with us.

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2:44This message comes from Midi Health. Most women never get real answers about their hormonal health. Midi is changing that with virtual care covered by most major insurances. Understand your hormones. Visit JoinMidi.com to book your first visit today. Welcome back to the 1A Podcast. We're talking about the long-term health effects of the September 11th attack on first responders and their fight for health care 25 years later. John Feal was one of those first responders. As a demolition supervisor, he spent more than five days helping clear rubble at Ground Zero. He was injured when a steel beam crushed his foot requiring partial amputation.

3:23He lobbied Congress for years, leading to the passage of the James Sedroga Act. His advocacy is chronicled in a new book. It's called I Will Follow You Anywhere, the true story of the 9-11 responders who took on Congress. And he joins us now from New York. John, welcome to 1A. Thank you for having me. Here's a voicemail we got from one of you. My friend passed away last year. His name is Donnie Ramator, and he was a first responder of Rookie Cop. He was proud to be there that day. I've heard many stories from his coworkers that said no matter what happened, they were going, whether they had a mask or not, and they would do it again and again and again.

3:58He, unfortunately, many years later, found out that he had kidney cancer accidentally from just a back pain. And he lived four awesome years after that, but they were rough and tough. And so I just pray for everyone going through something. It seems like it never ends. And that's my story. Thanks for that message. John, we're talking about the health impacts of 9-11 first responders, what they're experiencing today. But take us back to the moment you got injured. What do you remember from that day? Yeah, well, let me start by saying what that young lady just said and the person that she mentioned.

4:32He's on my wall. I built a pulp on Long Island dedicated to those who have died since. And I know the name well. On September 17th, I was horribly injured when roughly 8 ,000 pounds of steel crushed my left foot. And my injury was gruesome, horrific. But it pales in comparison to those who are deathly ill and dying and are suffering today, or those who have already passed away. And my story is so small, so I'm so minute compared to what these men and women in uniform and non-uniform are going through. And while my injury altered my life at that time for the worst, you know, what I thought was the worst is now it altered my life and it gave me a voice and it gave me direction.

5:22And the physical injury itself has led to so many other surgeries on my body because of the way I walk. But I was diagnosed by four doctors with post-traumatic. And most people in the 9-11 community who have cancer, respiratory illnesses, or physical injuries, they also have post-traumatic. And I went to therapy for two and a half years, and it saved my life. And I'm not saying it saved my life where I would have done something, but it pointed me in the right direction. And it has enabled me to be able to help tens of thousands of people in the 9-11 community and millions of veterans by getting legislation passed for veterans under the PACT Act as well.

6:04After your injury, you learned you were ineligible for the Victim Compensation Fund for survivors, volunteers, and first responders. What obstacles did you experience when you were trying to get support for your injury? Yeah. You know, at the time, devastating. Felt like it was an insult. Kind of hurt. Kind of took it personal. But it's probably one of the better things that happened to me because it helped create me and added fuel to my fire. and it's that little chip on my shoulder that I got bigger over the last two and a half decades and it's the reason why I do what I do. You know, ever since I was diagnosed by doctors with post-traumatic, I see better, I feel better, I hear different, I see different and I understand people's pain and suffering and I don't want anybody to go through what I went through because before everybody got sick and denied benefits, I got hurt.

6:57Half of my foot was in a jaw. And I had a fight to get workman's comms, social security, disability. And I'm not going to say I learned how to beat the system, but I learned how to navigate it. And I know how to get under people's skin and I know how to challenge their empathy and their humanity. And I'm good at my craft now because I got two and a half decades of experience of doing it. You say you're good at your craft now. How would you describe that craft? Challenging elected officials and city-run or There are state-run agencies to do their job, to question their humanity, their leadership, their empathy.

7:32And if they don't meet my threshold, then I'm going to make their life miserable and I'm never going to apologize. We need to value human life like we used to, and we don't value human life anymore. We disregard it, and I'm never going to conform to that. While you were recovering from your injury, you began this seven-year fight to create the federal health program that first responders can access now. What were you hearing from people during that period of time about the types of health issues they were dealing with? You mentioned PTSD, but what other health challenges were they facing? Upper, lower, restrictive airway diseases, respiratory, COPD, pulmonary fibrosis, and cancer.

8:16And, you know, there's 155 ,000 people in the World Trade Center Health Program. 57 ,000 plus have a certified cancer. One in three in the 9-11 community has cancer now. And we're a finite number. We're not getting bigger in the 9-11 community. We're getting smaller. And close to 10 ,000 people have passed away from a 9-11 related illness, which triples the amount of the innocent lives we lost to senseless violence 25 years ago. The James Zadroga Act was up for reauthorization in 2015. and you lobbied to get that passed, and it will now be funded until 2090. But when you think about that long road it took to get there, I mean, you traveled back and forth to D.C.

8:57hundreds of times. What keeps you going? Traveled to D.C. and walked the halls of D.C. enough times to circumnavigate the earth twice. You know, to see people suffer and, well, let me take you back. My injury, my time at ground zero is never going to define me. My mother, the way she raised me and the words that she said on her deathbed before she passed, that's going to define me. That's how I'm going to live my life. But all of those trips to D.C., I wouldn't trade it for anything. And we just got this year in April, the World Trade Center help program funded again and attached to the Homeland Security bill.

9:44and that was a two and a half year battle. And, you know, sometimes the media doesn't know we're there, but we're constantly protecting this piece of legislation that's only 16 years old. It's still maturing. And we're in surrogates, where it's uncles and aunts and brothers and sisters. And we want to see that bill mature so it helps as many people as possible. When you think, though, about that fight and what it's taken to get the program funded now through 2090. While you have a lot of fire and a lot of dedication to this cause, I would have to imagine there is frustration that it's taken this much work to get the support that you need.

10:28Yeah. And that's just part of that chip on my shoulder that's now an 800-pound gorilla. You know, frustration, anger, disappointment. But I'm never shocked and surprised at whatever they do in D.C. or what they say. And it's a there's no more legislating. There's no more governing. There's no more let's sit down and hash this out. It's all who can go on Twitter the fastest and tweet something silly and witty. Shame on Congress. You know, this country's on fire. Take 9-11 out of the equation. This country's on fire and this country deserves better and the 9-11 community deserves better because we're still fighting.

11:05We're fighting the Secretary of Health who's whose reckless actions have caused more harm in the 9-11 community over the last year than we have over the last two decades. When you think about the remembrances of the attacks, more will come over the course of this week. What do you think gets left out of those remembrances or the conversation around 9-11?

11:33The empathy, the compassion, the humanity. how we all put aside our ideologies, our religions, everything. And we were just human beings and we were treating each other accordingly. And I haven't stopped. That's the way I live my life. And I'm going to continue to live my life that way because I believe in people. And I think we need to have more difficult conversations And we need to have better leadership and better politics to understand that what this country needs is not somebody who goes on Twitter or a 24-hour news cycle and bloats about themselves. We're suffering. The 9-11 community is suffering.

12:21The American people are suffering. And we need to do better. and you know this year i'll see so many people that traveled and moved outside of new york and they come here for the 25 year remembrance we don't even say goodbye anymore we say i love you um because it might be the last time we ever see them again and uh to those men and women who worked on the pile um and then join me in dc um i asked them to be warriors when they should have been at home being farmers. And I asked them to pick up their swords and put down their rags. And now they're all home and they put down their swords and picked up their rags and planted some to watch it grow with their loved ones.

13:05John, stay with us. Stay with us for just a moment. We're talking to John Field. He was a 9-11 first responder and he's the founder of the Feel Good Foundation. We'll return with him in just a moment.

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14:24Find Bullseye in the NPR app at MaximumFun.org or wherever you get your podcasts. This message comes from Midi Health. Most women never get real answers about their hormonal health. Midi is changing that with virtual care covered by most major insurances. Understand your hormones. Visit JoinMidi.com to book your first visit today. Let's get back into the conversation. We're discussing the long-term health effects of the September 11th attacks on first responders and their fight for better health care 25 years later. John, before the break, you were describing what you're asking other first responders to do.

15:07And part of what I hear you saying is that, you know, the decision to show up to help the city recover, it irrevocably changed the course of people's lives. But there's still more work that needs to be done. But in this case, it's on behalf of their health, their families, ensuring that they have access to the care that they need. yeah you know every day uh we're putting people in the world trade center health program about uh about 12 000 people go into the program a year and then um once their illnesses are certified we help them uh file a vcf claim to get compensated for the illnesses this is this is uh seven days a week this is all the time and when we're not doing that we're in albany new jersey dc michigan getting legislation passed um you know i have no prior education to lobbying but i'm 20 for 20 and getting bills passed and in the book i will follow you anywhere people are going to read this and get mad laugh cry but at the end of each chapter is the blueprint and the recipe on how to get legislation passed at the state local federal level and it's like if i could do it you could do it because i'm not that smart of a man but i want to share if somebody wants to get engaged and has an issue they believe in, I want to share our success with them.

16:34How do you maintain your energy, your focus? Because this is not work that is easy. And I have to imagine it takes a lot out of you emotionally, mentally, energetically as well. I cry a lot. I cry a lot. Before 9-11, I think I cried twice when my grandfather died and when I was born. But I cry every day now, and I find it's a good release. But I laugh every day, too, and no one's ever going to take my sense of humor from me. But I learned there's a difference between advocacy and activism. Advocacy is over the weekend, on a Thursday night. It's a hobby almost. But activism is 24-7, and you've got to be committed to it.

17:21you're going to miss important days in your life, weddings, anniversaries, birthdays, celebratory events. And you got to put on blinders and not get distracted by shiny objects to see the mission through. And I made a promise to my mother. I made a promise to the 9-11 community and the veteran community that I'm going to do the best I can until I can't do it anymore. And don't get me wrong. I want to touch the grass. I want to go home. I haven't been home in 25 years. And hopefully this book will lead me somewhere home or close to it where I can sit back and just know what I did was significant because I'm not one to reminisce now.

18:04I won't ask you to share what your mother said to you before she passed. I believe those exchanges are sacred. But how would you describe what guides you these days? My mother. My mother. Her words. My mother was my mother, my father, my best friend. We talked to each other as if we were friends instead of mother and son. And everything she's ever said has come true and she's smarter in passing than when she was alive because we take it for granted and um everything i do is for her and she's my motivation and let's not get to see people suffer every day every day and to go over 200 funerals um you just don't want to see people suffer and i think the true spirit of the human being is to Give of yourself.

19:04And I hope this week, not just on the 11, but this week and the week after, that we can go back to giving of ourselves to each other. We can have difficult conversations. We can hold the door open for each other. We can buy somebody a cup of coffee. We can give somebody a shoulder to lean on or cry on. And I do that 24-7 every day. That's John Feel. He was a 9-11 first responder. He's the founder of the Feel Good Foundation. His new book is called I Will Follow You Anywhere, the true story of the 9-11 responders who took on Congress. John, thank you so much for speaking with us. Thank you for having me.

19:42Let's turn now to new voices. Joining us from Port Jefferson, New York, is Lynn Hallerman. Lynn was the director of palliative care at Stony Brook Medicine from 2007 to 2019. And as a doctor, she's taken care of 9-11 first responders in the years after the attacks. These days, Lynn is also a freelance journalist. Her latest reporting for the Reveal podcast from the Center for Investigative Reporting follows the stories of 9-11 first responders in her own community. Lynn, welcome to the program. Thanks for having me. Also joining us from New Jersey is Jodi Streisch. Jodi is a clinical psychologist, and she's the mental health director at the Rutgers World Trade Center Health Program, Clinical Center of Excellence.

20:21Jodi, thank you so much for joining us. And we're also hearing from you. We got this message from James. I was a firefighter on 9-11, and I have to say the fire department's treated us quite well with home stuff, and I do have some lung issues still. And I see a doctor at the fire department mostly every year. Thanks for that message. Lynn, I would love to hear your reflections on what we just heard there about the experience of first responders and the need to advocate for themselves to get access to care. Yeah, I mean, his story, it sounded familiar to me. I've had the opportunity in the local community where I live in Suffolk County, New York, which is really teeming with public service individuals, firefighters, police, medical, lots of tradesmen.

21:20And I discovered in learning about the 9-11 community, all the people around me locally who had had these same experiences that that firefighter mentions, just trying to get care, finding that years later they have damage to their lungs that they just didn't expect to have, and trying to find a way to get care for themselves. Where I happen to work at Stony Brook Medicine is the home of one of the very first centers of excellence for the World Trade Center Health Program. So when I worked as a palliative care doctor, I unfortunately occasionally would have to take care of a firefighter who was dying of a cancer really too young, possibly sometimes in their 30s, very young with young families.

22:12and just the dismay of having to go through that experience. Often they had untreatable cancers from all that dust that they inhaled at the time. So it's a very familiar story that I heard just now. Well, the World Trade Center Health Program was established in 2011, as we said, following the passage of the James Zadroga 9-11 Health and Compensation Act of 2010. So for those who are eligible, treatment for 9-11-related health issues is free of charge. But under this program, Jodi, who qualifies for care? Who's considered a first responder? Yeah, I actually like to use the term World Trade Center responders because many of the community is much broader than what most people picture as a first responder.

22:58Of course, it includes the firefighters, the police, the EMS, and traditional emergency personnel. but it also includes the non-uniformed responders, those who participated in the rescue, recovery, cleanup, and support efforts. So at Rutgers, we do care for both the uniformed and the non-uniformed responders. Lynn, what sort of proof or credentials do people need to show to qualify for the program, if any? I mean, the thing that I just want to add to what Jodi said, also, there were a lot of volunteers that were there who qualified. They were the people in the environs of the community that qualify.

23:38Even journalists, if they were there for their jobs, you know, if they were there, qualify. So it's a very large range of people. I think John also represents this huge group of people that were there after, you know, for the recovery, where they were down there for months in the cleanup who had these very large exposures. So it's a good question that you asked about who actually is a responder. To qualify, I mean, there's generally the main thing you have to be able to do is prove that you were there. That's the number one thing. And they have, if you go on their website, they have these very specific ways that you can do that through your job and so forth.

24:17And sometimes they will even accept an affidavit from two individuals about you being there. So that's the number one thing. And then the other aspect of the program, which it was very interesting to learn about, is they do what's called monitoring and treatment. So you don't have to be sick as a responder to register and be part of the program. And what you would do is just go for a yearly checkup and they would keep track of you. And then you would have access to the mental health. You would have access to this community of care just to show up for this once a year appointment. If, you know, unfortunately you turn out, something turns up like a cancer, very common lymphomas, leukemias, prostate, thyroid.

25:05If one of these cancers pops up and you're registered, then that becomes what's called a certified illness through the World Trade Center program. And once your illness is certified through the federal government, then the care for that particular illness is monitored and paid for. All the care around that illness is paid for. So it takes away a lot of the stress and pressure of having to deal with insurances and all that people have to go through when they're certified. Well, the New York City Fire Department, the FDNY, released a report last week, and it detailed the health impacts of the September 11th attacks on emergency response workers in New York.

25:47They found that more than 10 ,500 people were diagnosed with at least one physical condition related to 9-11, including lower and upper respiratory diseases, cancers, reflux disease, or GERD. We got this message from a listener. I was a first responder. I am a nurse practitioner. And most of the people that we cared for when we got there were the workers that were working on the pile downtown. So we had a heart attack. We had lots of scrapes, cuts, bruises, lots of eye injuries, and lots of respiratory problems. My life now is I am retired. I do have asthma. I do have GERD, and I'm working on perhaps get some money for those medical problems.

26:41And GERD is gastroesophageal reflux. So those are some of the physical impacts that we've heard first responders suffer from. Jodi, what about the mental health impacts? Sure. Well, we do provide services. is once we identify, as Lynn said, we do this ongoing health monitoring. And once we identify any potential World Trade Center health, mental health condition, we do work with the certification process so that once the member is approved, they can start to receive treatment for that condition. And our members here at Rutgers, we think of it more as a one-stop shop. We've worked pretty hard to build a program around this particular community and their needs.

27:31And so we do try to create programming that's tailored to them. So right now we provide in-house individual psychotherapy. We're running about 10 different therapy groups at a time, along with specialized programming, depending on how their needs evolve over time. So now we've addressed other issues such as medical illnesses, obstructive sleep apnea, cancers, aging, sleep, and adjustment. And now just recently, we started to implement neuropsychological assessments as more members come forward with concerns about their own memory, attention, and executive functioning. So really, as this patient, as population ages, there is an increasing need to better understand what might be happening to this population, both emotionally and cognitively, and what might be contributing to those changes.