Never forget? 9/11 heroes are still fighting for health care after years of government lies

Funding for 9/11 health program is set to run out of funding without congressional action

Published March 1, 2023 5:00PM (EST)

9/11 survivor advocate Mariama James calls for additional federal funding for people who were sickened by their exposure to toxins following the terror attacks during a news conference at the U.S. Capitol on February 28, 2023 in Washington, DC.  (Chip Somodevilla/Getty Images)
9/11 survivor advocate Mariama James calls for additional federal funding for people who were sickened by their exposure to toxins following the terror attacks during a news conference at the U.S. Capitol on February 28, 2023 in Washington, DC. (Chip Somodevilla/Getty Images)

This article originally appeared on Work-Bites

New York labor unions are at the forefront of the latest drive to secure permanent funding for the 9/11 World Trade Center Health Program, which is set to run out of funding without Congressional action.

The renewed full-court press comes as the post-9/11 death toll from exposure to the World Trade Center toxic air has well surpassed the 2,600 people that died at that site on the day of the attack. Today, tens of thousands of first responders and civilian survivors are being treated for at least one life-altering chronic disease, often several, by the World Trade Center Health program.

"Responders and survivors shouldn't have to lie in bed at night just wondering if Congress is going to do its job, if our country is going to fulfill its promise," Ryan Delgado, the NYS AFL-CIO's chief of staff told reporters at a Feb. 28 Washington D.C. press conference. "I work for the New York State AFL-CIO, and I represent 2.5 million union members and 3,000 unions. Our members died working in that building that day. They rushed in when others ran out. They worked and lived in the surrounding communities, and they worked on the pile for days, weeks, months, and years in the rebuilding efforts as well."

Back in December 9/11 World Trade Center advocates were dealt a setback when the full $3.7 billion appropriation needed was reduced to just $1 billion during the negotiations over the $1.7 trillion Omnibus spending bill rushed through Congress before the Democrats lost control of the House of Representatives.


FDNY Lt. James McCarthy, is president of the Uniformed Fire Officers Association, which represents 7,000 active and retired members who he told reporters all responded to the WTC on 9/11. On that day, 343 members of the FDNY. Currently, well over 300 members have died from their occupational exposure in the weeks and months that followed.

"More people are going to die from the FDNY than died on September 11 — that is happening now," McCarthy said. "As far as we are concerned, what we think in the FDNY — the firefighters and the fire officers — cancer is inevitable. We are going to get sick. We are just hoping it's not as serious. That's why we need this funding. That's why we need healthcare because we know we are going to get sick…we are dying every day. We are getting sick every day; thousands of people have been diagnosed with cancer. We need medical monitoring. We need prescription drugs. That's why we are here."

"We are in the second month of the year 2023, and already we have lost nine members of the FDNY to World Trade Center-related illness. Think about that for a minute," Edward Kelly, the president of International Association of Fire Fighters told reporters. "We've been walking these halls for decades and many of those we walked with like our pal Ray Pfeiffer — who actually rolled in the end because he needed a wheelchair. They fought for what was right just like we did on 9/11 and 9/12. We have one simple ask of Congress. Do the right thing; make sure our nation is there for those who were there for our nation."

In addition to the tens of thousands of first responders and construction workers who worked for several months at the 16-acre site, there were close to 20,000 New York City public school students and thousands of teachers as well as support staff ordered back into dozens of schools in the contaminated zone.

Tens of thousands of college students attended schools like Pace University and the Borough of Manhattan Community College in the WTC hot zone.

After the 9/11 World Trade Center attack, the EPA offered reassuring statements that the air was "safe" to breathe — even though it did not have sufficient data "to make such a blanket statement" when their "air monitoring data was lacking for several pollutants of concern, including particulate matter and polychlorinated biphenyls (PCBs)," according to the EPA's Inspector General. 

"Furthermore, The White House Council on Environmental Quality influenced, through the collaboration process, the information that EPA communicated to the public through its early press releases when it convinced EPA to add reassuring statements and delete cautionary ones," the EPA Inspector General wrote, adding that "over 25-percent of the bulk dust samples that EPA had collected…showed the presence of asbestos above the 1-percent threshold used by EPA to indicate significant risk."


Sen. Kirsten Gillibrand, D-N.Y., one of the bill's lead sponsors, said the 9/11 Responder and Survivor Health Funding Correction Act was needed with the growth of the program due in part because thousands of the survivors were children at the time of their toxic exposure.

"Children, firefighters, construction, and recovery workers, first responders--- these people are now dealing with conditions like cancer, chronic respiratory disease, chronic pulmonary obstruction disease, PTSD, anxiety, and depression," Gillibrand said. "Today more people have died from 9/11 health conditions than died on the day of the attacks. Congress created the World Trade Center Health Program in 2011 to provide medical treatment and monitoring for many of these people but the formula used to calculate how much money would be needed will not keep pace with anticipated costs."

"But still, far too many have gotten sick, and we need to add resources. And they say, 'why do you need more money?' Damn simple — because more people are getting sick," Senate Majority Leader Chuck Schumer told reporters. "We have found more and more people are suffering different diseases from the stuff they breathed in. What do we say to them? Too late. Too bad. NFW as we say in Brooklyn — that ain't happening. So, we are going to keep working because every time they have thrown a log in our path, we have found a way around it."

Mariama James and her family lived in lower Manhattan on 9/11.  She told reporters she has lost both of her parents to their World Trade Center-certified conditions.

"Responders and survivors in the tri-state area and around the country, some of whom were children and babies at the time of the September 11 attacks, are suffering not just because of those attacks, but also because our own government lied to us and put us all in jeopardy when the EPA said the air was safe to breathe," James said. "Residents were told we shouldn't be concerned and that we should simply clean toxic dust coating every surface of our apartments with a wet rag."

James continued. "Children were made to return to school when the area still looked like a war zone. People like my mother were told to return to work, in her case to that notorious Deutsche Bank building on the World Trade Center site that the press were calling a vertical Superfund site. My entire immediate family has been traumatized and made sick. My children and I, including the baby I was carrying in my womb that day, developed conditions we never had prior and are now certified as 9/11 related. We were promised treatment through 2090. Now, fund it."

Gillibrand's bill would also make responders to the attack on the Pentagon and the Shanksville, Pennsylvania crash site of United Airlines Flight 93 eligible to participate in the 9/11 WTC Health Program.


"On Sept. 11, 2001, Nate Coward, was 20-years-old and on active duty with the U.S. Army at Fort McNair in Washington D.C. He was part of the search and rescue at the Pentagon after it was attacked.

Coward told reporters that as a consequence of his participation he had to be "medically retired from the Army at the age of 23" and had "trouble breathing—severe pain and a host of other ailments.

"I spent years working with the VA to have my illnesses certified as related to the Pentagon to no avail," he said. "By the spring of 2007, at the age of 26, I was determined by the VA to be permanently and totally disabled, though I still struggled to get the VA to acknowledge my sarcoidosis as related to my service at the Pentagon. Many years later, I learned about the World Trade Center Health Program and discovered they were accepting Pentagon responders.

The disabled veteran was accepted by the World Trade Center Health Program in 2016. They certified several serious illnesses and injuries from his service at the Pentagon on 9/11, only to be told in 2021 by the World Trade Center Health Program "they had made a mistake."

"According to the program, some active-duty military, like myself and some civilians are not eligible to be enrolled," Coward said. "The men and women of the armed services should not be put at disadvantage or excluded from proper healthcare because they volunteered to serve their country."

Rep. Dan Goldman, D-N.Y., lived in lower Manhattan and told reporters he was at home when he watched the second plane slam into the WTC. The recently-elected Congressman also referenced the Environmental Protection Agency's representation right after the attack and collapse of the World Trade Center, that the air was "safe to breathe."

"I also won't forget the promises that were made to the survivors and especially the first responders that Ground Zero…was safe from toxins. But now, twenty years later, we know that promise was false and we are still dealing 20 years later with the fallout — the medical fallout of that false promise," Goldman said. "That's why the James Zadroga 9/11 Health and Compensation Act was such a critical and just piece of legislation." 

Goldman continued. "We have a choice now between funding health healthcare for those who sacrificed their lives in defense of our nation or letting them go without the funding to pay for their medical care. It is a simple choice. Do we support those who defended our country that day and the weeks following, or do we abandon them?"  

John Feal, a long-time 9/11 WTC Health Program advocate and participant, has made multiple trips to Washington over the last 20 years to lobby on behalf of first responders and survivors in the exposure zone.

"Nowhere in this bill does it say that there are over 25,000 people with a certified cancer," Feal said. "By 2025 there will be 35,000 people with a certified cancer. Nowhere in this bill does it say we double those that died that day. We shouldn't have to fight. We were…..lied to 20 years ago when they said the air was safe to breathe. We are coming down here — wrap your arms around this people — we are coming down here fighting for health care when we were lied to. Does that make sense?"

Feal continued. "There's no win here. But there can be justice by getting this done now. Don't wait until 2027."


The bill has attracted bi-partisan support which will be vital with the House now under GOP control.  

Rep. Andrew Garbarino, R-N.Y., one of the bill's lead sponsors, acknowledged the presence of Jamie Atkinson at the press conference who was only 19-years-old on Sept. 11, 2001 when he responded to the World Trade Center site as a member of the Bayville Community Ambulance Corps. Atkinson is now the Deputy Coordinator of the Suffolk County Department of Fire and Emergency Services.

"Like so many Americans he did not hesitate to answer the call and headed to Ground Zero to help with the clean-up and rescue efforts," Garbarino said. "Today he is fighting a very rare stage IV cancer, has had numerous major surgeries, chemotherapy, and has had organs removed. The cost of his medical care is in the millions. We need to fix the shortfall for Jamie and the tens of thousands like him who rely on this program."

Rep. Anthony D'Esposito, R-N.Y., a retired NYPD detective, said he wanted to see more from his colleagues than 'Never Forget' rhetoric.

"There's hundreds of thousands — millions of Tweets, Instagram posts, Facebook, T-shirts, bracelets [saying] 'Never Forget,'" he said. "I urge all of my colleagues on both sides of the aisle — this isn't a Republican issue. It's not a Democratic issue. It's not a New York City issue. This is an American issue and what we owe to these great Americans who have died and are dying."


According to a CDC fact sheet, the shortfall in the program, which as of last year had 110,000 participants, was partially the result of a "significant" spike in the number of first responders and survivors who have enrolled for the annual screening and health care.

The program's costs also substantially increased due to "the number of cancer cases it certifies and treats," according to the CDC.

"Of the approximately 65,000 WTC Health Program members with at least one certification, almost 24,000 (more than 36 percent) have at least one cancer certification," the agency disclosed. "The complexity of treating cancer, especially with other comorbidities, and an aging membership in general, has increased the Program's health-care costs beyond what was previously estimated."

Under the program, first responders are guaranteed free screenings for life, while civilian survivors must exhibit symptoms of a 9/11 disease or condition for enrollment. While close to 90 percent of the tens of thousands of first responders are enrolled in the WTC Health Program, less than 10 percent of the hundreds of thousands or residents, commuters and students signed up.

"At the time the Program was implemented [July 2011], there were approximately 56,000 responders and 5,000 survivors enrolled from prior programs," according to the CDC. "In the first five years [July 2011 - September 2016], the Program enrolled an additional 9,000 responders and 5,000 survivors; compared to the past 5 years, during which the Program has enrolled approximately 16,000 responders and 20,500 survivors."

By Bob Hennelly

Bob Hennelly has written and reported for the Village Voice, Pacifica Radio, WNYC, CBS MoneyWatch and other outlets. His book, "Stuck Nation: Can the United States Change Course on Our History of Choosing Profits Over People?" was published in 2021 by Democracy@Work. He is now a reporter for the Chief-Leader, covering public unions and the civil service in New York City. Follow him on Twitter: @stucknation

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