'The tragedy of 9/11 continues': Why the death toll still grows 25 years later

The constant burning in NYPD Officer Renee Totaro's lungs began almost immediately after she arrived at the smoldering ruins of the World Trade Center on Sept. 12, 2001.

During the four months the Yaphank resident worked amid the miasma of blowing contaminated dust and the piles of debris at and near Ground Zero, "everything burned, everything: My eyes, my nose, my throat, my stomach."

Over the years, the now-retired officer endured breathing problems that became progressively worse. A few months ago came the shock of hearing she’d need double-lung and heart transplants.

Totaro said  in the aftermath of 9/11, it never occurred to her that what she thought were temporary physical problems would leave her debilitated.

"I thought it would all go away," Totaro said as she sat on a picnic bench in a park near her home, a portable oxygen tank beside her and a cannula in her nose.

Twenty-five years after immense clouds of noxious dust from the World Trade Center terrorist attacks turned much of lower Manhattan into a toxic waste site, contaminants police officers, firefighters and others breathed in and touched, sometimes for months on end, are still ravaging bodies and claiming lives.

There's no official estimate of how many people have succumbed to 9/11-related illnesses, but it's believed to be higher than the 2,753 who died directly from the attacks — and the number is rising. The FDNY said last week that 451 of its firefighters and EMS employees had died of 9/11-related illnesses, more than the 343 who died during or after the collapse of the Twin Towers. An estimated 400,000 people were exposed to toxins on or after 9/11.

Doctors are telling 9/11 responders that cancerous tumors have slowly been growing inside their bodies. Health conditions that seemed under control have gotten worse. People are having issues with memory earlier in life than they should.

"The tragedy of 9/11 continues to unfold," said Dr. Craig Devoe, systems head for gastrointestinal medical oncology at the Northwell Cancer Institute. "The story isn’t over."

Asbestos, benzene, glass fibers, lead, pulverized hydrochloric acid and many other hazardous substances were in the air and on the ground on Sept. 11 and the months that followed.

Documents released Tuesday by New York City Mayor Zohran Mamdani show city officials at the time knew about the dangerous levels of toxins but concealed the information from the public, with some publicly asserting the air was safe to breathe.

Exposure has been linked to a long list of cancers and respiratory and digestive disorders. Many have lengthy latency periods, which are how long diseases take to be detected or show symptoms.

Take mesothelioma, a cancer most often caused by asbestos exposure. Scientists say it’s certain that asbestos from the destroyed buildings ended up in many people’s lungs.

The latency period for mesothelioma is usually between 20 and 50 years, so it’s only a matter of time before physicians find the cancer in far more 9/11 first responders and survivors, said Dr. Michael Crane, medical director of the World Trade Center Health Program for the Icahn School of Medicine at Mount Sinai in Manhattan.

"There was tons of asbestos in those buildings, tons," Crane said. "And all those people in the pictures walking around covered [in it] and breathing it and kind of wearing it — they're all at risk."

Other conditions associated with 9/11 exposure, including lung cancer, also either have long latency periods or can take many years to become debilitating.

The number of cancer cases linked to 9/11 has risen tenfold in the past decade, from 5,634 in June 2016 to 57,044 in June 2026, World Trade Center Health Program data shows. The federally funded health program provides free monitoring and treatment of 9/11-related exposure.

Earlier cancers, aging brains, 'embedded' toxins

WTC program doctors say what they’ve observed in their patients is alarming.

They’re getting certain types of cancer not only at high rates, but earlier in life than expected. Their brains, pancreases and lungs are on average aging more quickly, research shows, meaning higher risks for multiple diseases.

Dr. Benjamin Luft, director of the Stony Brook WTC Health and Wellness Program, said he initially expected most people’s breathing problems and other conditions would go away after a year or two.

"The body has a way of cleansing itself," said Luft, whose WTC sites in Commack and Westbury focus on responders — police officers, construction workers and others who were part of rescue and recovery efforts.

But most patients are still sick, and many are getting worse, he said. The toxins, Luft said, "became embedded in them."

Some responders spent months amid toxic dust and debris.

"The dust doesn't stay on the ground when you dig in it," said Sean Clouston, a public health professor at Stony Brook University and lead author of a study that found responders who had the greatest exposure to toxins had the highest lung cancer rates. "It blows up in your face. The responders were digging in it, and they were inhaling the air as they dug in it."

They also were breathing in dangerous fumes from burning and smoldering debris, he said.

Risks at low exposures

Even some people who were at the site only on Sept. 11, 2001, are experiencing long-term health consequences because "the levels of exposure were so massive," said Dr. Jacqueline Moline, director of Northwell Health’s WTC Health Program in Rego Park, Queens, which treats many Long Islanders.

The greatest risk is for those who were in the highly toxic dust cloud, especially immediately after the towers fell, but anyone in the area who may have breathed in the dust, whether they realized it or not, could potentially develop health problems, Moline said.

It's not just the initial exposure. Breathing in so many contaminants from the WTC site "sets up your body to in essence react more significantly to any subsequent exposure," such as viral infections or smoke firefighters may breathe in on the job, increasing the risk of serious illnesses, said Dr. Anna Nolan, a pulmonary critical care doctor at NYU Langone and a medical officer for the FDNY.

Difficult to count

Doctors say the large majority of responders are in the health program, but only about 155,000 of the 400,000 people estimated to have been exposed to contaminants on and after 9/11 have enrolled. 

Nearly 26,000 Long Islanders are enrolled, including more than 19,300 responders, about 22% of all responders, a CDC spokesman said in an email.

Thousands of people who were at or near Ground Zero have died, but the exact number is unknown, and it's especially unclear how many died specifically of 9/11-related causes, said Andrew Todd, director of the WTC Health Program General Responder Data Center at the Mount Sinai medical school. It’s not something the federally funded program was tasked with tracking, he said.

There are 8,633 people in the WTC program whose deaths were recorded as of June 30, but that includes non-9/11-related deaths, a CDC spokesman said.

Researchers have confirmed at least 3,300 non-firefighter responders had died as of 2024, including of causes not related to 9/11, but that is likely an underestimate because health information for some responders was unavailable, said Moshe Shapiro, a senior biostatistician with the Mount Sinai data center.

Although doctors don’t know the precise post-9/11 death toll, they know it will continue to climb as responders and others lose battles with cancer and other diseases.

"Your body sort of wears down as you get older," Clouston said.

Physical and mental toll

Totaro did not need oxygen tubes until 2021. Two years later, she was diagnosed with pulmonary fibrosis, a scarring of the lungs that makes it more difficult for oxygen to enter the bloodstream. A few months ago, she was told she'd need the double-lung and heart transplant.

Over the years, she also developed chest pains. About five years ago, she was diagnosed with heart failure and a defibrillator was implanted in her chest.

The severe damage to her heart and lungs leaves Totaro constantly fatigued. She can’t walk down the aisle of a grocery store without catching her breath and leaning on a cart.

Like nearly 1 in 5 other responders in the WTC program, Totaro has been certified as having a mental health condition, in her case post-traumatic stress disorder, the most common WTC-related mental health diagnosis. Years of therapy have helped her control the panic attacks she used to regularly have when planes fly low or when she has flashbacks of walking among rubble that may have contained human remains.

More than a decade after 9/11, she began having problems with her short-term memory.

"If my husband asks me to do something, approximately two minutes later, I don't remember what he said," Totaro said.

People usually don’t develop cognitive problems until they are at least 70, Luft said.

"Here we’re having a good number of our patients who are in their 50s who are becoming impaired," he said.

A 2025 study of Stony Brook WTC program patients that Luft co-authored concluded responders with PTSD had brains that appeared significantly older than their chronological age — meaning the brain of a 60-year-old, for example, may look more like that of an 80-year-old — which suggests a higher risk of dementia and other cognitive problems.

Previous research of non-WTC patients had linked PTSD and depression to a higher risk of dementia, Crane said.

"But then you throw in this massive toxic exposure on top of that" and that may increase the risk even more, he said.

Studies show some cancers, including thyroid, prostate and skin cancer, and leukemia, are significantly more common among responders than in the general population — and those comparisons don't account for cases in which the cancers have yet to be detected.

The list of cancers covered by the WTC health program includes ones that have a documented relationship with environmental exposure, even if no study has yet shown a higher incidence of that specific cancer among those exposed to 9/11 toxins, Crane said. It’s an evolving list: All rare cancers were added in 2014, uterine cancer was added in 2023.

It’s impossible to know for sure whether 9/11 was the cause of a person’s cancer, but the presumption is cancers on the list were due to WTC exposure, Crane said.

The program does, however, exclude coverage of diseases if they can't be linked to 9/11, and it does not cover diseases — including certain cancers — if symptoms appeared too early or too late to be associated with WTC exposure.

Not all registered

On a recent morning, Frankus Mays, 57, of Hempstead, who has rhinosinusitis, which is an inflammation of the sinuses, as well as asthma and sleep apnea, was at the WTC health site in Rego Park for an annual checkup.

Mays, who spent two months as a New York City Department of Transportation employee cleaning debris, trusts the doctors there because they have experience treating 9/11 patients.

"The doctors already know what your problem is, so I have more confidence in them to understand my problem," he said.

Moline said the regular monitoring of patients means "we’ve been able to diagnose conditions early."

Totaro doesn’t believe she’d be alive if it weren’t for the program. Before she enrolled, physicians weren’t sure which conditions she had and what medicines to prescribe, she said.

The way her declining health has taken over her life feels "overwhelming" at times. A few months ago, shortly after she was told she’d need the transplants, she was so exhausted from constantly going to doctors that "I just cracked for a moment and said, ‘Why me?’ "

But, she said, she "quickly corrected myself." She began focusing on how grateful she is for the medical care that has kept her alive, the therapy that has helped her better cope with her PTSD, and a husband who loves and cares for her.

She reminded herself that others died. "You're still alive," she told herself. "Yes, you're sick, but you're still alive."