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Dr. Benjamin Luft

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Some WTC 911 responders are suffering from PTSD and cognitive disorders many years after 911. Researchers are trying to determine why as they continue monitoring patients. Photo courtesy of Stony Brook WTC Health and Wellness Program

Twenty-two years after the September 11 World Trade Center attacks, responders who have suffered physical and cognitive illnesses resulting from exposures continue to be monitored by healthcare providers. Ongoing studies by investigators at the Stony Brook WTC Health and Wellness Program reveal that assessments of this patient population’s mental health and cognitive status remain on the forefront of research as we move further away from that fateful day of 9/11.

Benjamin Luft, MD, Director and Principal Investigator of the Stony Brook WTC Health and Wellness Program, and the Edmund D. Pellegrino Professor of Medicine at the Renaissance School of Medicine at Stony Brook University, and his colleagues study all aspects of responders’ health status. The program monitors approximately 13,000 WTC responders.

Previous research has shown that some responders may be experiencing cognitive difficulties earlier in life than the general population, and that PTSD, which remains one of their most common ailments, may be associated with cognitive problems and/or physical illnesses.

A compilation of new research published over the past year  suggests  the need to delve further into investigating the brain status of responders and their cognitive problems.

A study in the Journal of Geriatric Psychiatry and Neurology assessed more than 700 responders, many with chronic PTSD, and the relationship between having cortical atrophy and behavioral impairments. They found that individuals with PTSD start to experience more mental health symptoms as a secondary symptom to cognitive impairments. Specifically, responders with an increased risk of cortical atrophy showed behavioral impairment in motivation, mood, disinhibition, empathy and psychosis.

Published in Molecular Neurobiology, another study revealed that there are associations between WTC exposure duration and inflammation in the brains of responders among 99 responders who participated from 2017 to 2019, with the average age being only 56 years. Neuroinflammation was evident both in the hippocampus, a part of the brain that helps to regulate emotions and memory, and throughout much of the cerebral white matter.

A paper published in Psychological Medicine highlights research that may reveal a better way to  understand responders’ PTSD symptoms, as opposed to self-reporting or screening. This work found that by using an AI program that reads the words of responders can predict their current PTSD and even the future trajectory of the illness.

Moreover, WTC investigators are developing AI programs to identify and predict psychological symptoms from facial expressions and tone of voice. AI analyzes video recordings of WTC responders. Importantly, when these methods are fully developed, they may be able to offer objective diagnostic tests for PTSD and other mental disorders.

Many responders to date have experienced mild cognitive impairment in comparison to non-responders their age.

A study that measured a key aspect of brain chemistry — proteins or biomarkers often associated with dementia and Alzheimer’s Disease — may provide specific evidence that responders need to be monitored for earlier onset dementia.

Published in the Alzheimer’s Association’s Diagnosis, Assessment and Disease Monitoring, this study illustrates that among approximately 1,000 responders —  average age at 56.6 years, and some who have dementia — associations exist between WTC exposures and the prevalence of neurodegenerative proteins in their brains.

Lead author Sean Clouston, PhD, Professor in the Program of Public Health, and the Department of Family, Population, and Preventive Medicine, and colleagues found that 58 percent of responders with dementia had at least one elevated biomarker and nearly 3.5 percent had elevations in all biomarkers. The overall cohort had an increased risk of dementia associated with plasma biomarkers indicative of neurodegenerative disease.

Another core member of the Stony Brook research team, Pei-Fen Kean, PhD, Professor in the Department of Applied Mathematics and Statistics, is involved in several ongoing multi-omics research projects to help explicate pathophysiology of these disorders on molecular level and identify novel blood-based biomarkers. For example, a study in the Translational Psychiatry identified the metabolomic-proteomic signatures associated with PTSD to enhance understanding of the biological pathways implicated in PTSD.

As the collaborative work of the research teams affiliated with the Stony Brook WTC Health and Wellness Program moves forward, they will use previous findings and new methods to build their work to best assess the mental and physical health conditions of responders.

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WTC responders at Ground Zero, working on the pile in the aftermath of 911. Photo by John Bombace

As the medical challenges to first responders at the World Trade Center site after the 9/11 attacks increase, Stony Brook University’s treatment program has increased the number of people it helps and, recently, also the federal funds to support efforts to treat people.

Dr. Benjamin Luft at the Stony Brook WTC Wellness Program, where he serves as director. File photo

Recently, the National Institute for Occupational Safety and Health, which is part of the Centers for Disease Control and Prevention, awarded the Stony Brook World Trade Center Health and Wellness Program $147 million over an eight-year period to expand patient care and support infrastructure needs.

The SB World Trade Center Health and Wellness program now sees up to 13,000 patients, which is more than double the 6,000 patients it used to see.

“Patients are getting sicker and their diseases are much more complex with a variety of different systems being involved, both psychologically as well as physically,” said Dr. Benjamin Luft, director of the WTC Wellness Program.

Through the work the SB WTC group has conducted, doctors and researchers have demonstrated that diseases and physical and cognitive challenges associated with aging have occurred more rapidly in the WTC population.

At the same time, COVID-19 has also exacerbated conditions related to exposure to the site, with over 20% of this population experiencing lingering symptoms due to the pandemic.

The WTC first responders have developed chronic sinusitis and a variety of gastrointestinal disorders, such as gastroesophageal reflux disease (or GERD).

While these diseases occur in the general population, “the chronicity is unique,” Luft added.

The SB WTC Wellness program will use the funds to hire additional staff with specialties in pulmonology and psychiatry, among other areas, Luft said.

The majority of the work occurs at the Wellness Center’s main facility and clinic in Commack. SB also runs a site in Mineola. The funds will help revamp the Mineola site as well.

The two sites will use updated technologies and will deploy emerging capabilities in telehealth and artificial intelligence to communicate, diagnose and monitor cases.

Federal funds have supported the effort for 18 years, as NIOSH has funded clinical services for WTC patients treated at Stony Brook.

Medical conditions for this population have included post-traumatic stress disorder and respiratory illnesses.

The funding more than doubles the $60 million, five-year award the WTC Wellness Program received in 2017 from NIOSH that had provided support until the end of March of this year. NIOSH had extended the grant for six months until the current funding started at the end of September, Luft said.

Patients have developed a range of cancers, as well as lung issues such as asthma and chronic obstructive pulmonary disorder.

Additionally, patients are struggling with a variety of mental processing challenges.

“We see a lot of patients who have a variety of cognitive and memory problems,” Luft said. 

Luft emphasized that many of the thousands of patients he treats have several health issues simultaneously. By using new technologies, these efforts will enhance the quality of life for people who were on site after the attack.

Luft added that the connection and support from NIOSH have helped support health care for this population.

“The various people at NIOSH are really involved in the program,” he said. “It’s been very satisfying.”

Stony Brook University faculty in public health, psychiatry, pulmonary care, cardiovascular care and neuroscience all take part in ongoing research related to the health issues of WTC responders.

Luft emphasized that the care first responders at the WTC receive tries to be “proactive” with an extensive effort to screen for various diseases, including cancer.

The research and treatment efforts for the WTC population extends to other health care initiatives for people exposed to carcinogens in wars or from other unintentional exposures.

The exposure from 911 is similar to those from burn pits, Camp Lejuene and other hazards.

“The toxins are similar,” Luft said.

 

 

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Stony Brook WTC Wellness Program clinic. Photo from Stony Brook Medicine

Dr. Benjamin Luft remembers the feeling of being prepared to treat 9/11 survivors and then no one arrived at the hospital.

Dr. Benjamin Luft is the director and principal investigator at Stony Brook WTC Wellness Program. Photo from Stony Brook Medicine

Stony Brook University was among local medical facilities that were prepared for the arrival of 9/11 victims when Luft was the chairman of the Department of Medicine. He said, like others, he had seen the towers falling on television, and from the 16th floor of SBU’s Health Sciences Tower, he could see the smoke from the World Trade Center.

“The idea was that there was going to be real mass casualties, and that this would overwhelm the system in New York,” he said.

Medical teams from various departments met in the conference room of the Department of Medicine, but he said “it became obvious as time went on, that there was no one coming to Stony Brook.”

“It was eerily ominous, because we began to understand that either people had escaped the buildings, or … that there were relatively few survivors from the attack itself,” the doctor added.

He said anyone seeking treatment stayed in the city, and the hospitals in Manhattan weren’t overrun as originally anticipated.

Luft, who is now the director and principal investigator at Stony Brook WTC Wellness Program, said after the tragic day he visited Ground Zero to see what was happening at the site. It was there he witnessed what first responders were being exposed to while working.

“It was obvious that there was going to be a lot of responders that were going to become ill as a result of that, because there was a tremendous amount of dusts and toxins in the air,” Luft said. “There was a lot of fire, burning, and there was a lot of fumes that came off of burning plastic and electronics.”

He added there were traumatizing events that people at the site experienced such as seeing bloody human parts and, for earlier responders, people jumping out of the towers.

He said shortly after September 11, local labor leaders met with him and told him how many of those first responders lived on Long Island and were getting sick. He learned that while many were insured, their insurance wasn’t covering their health issues due to them volunteering and not doing what the insurance companies considered on-the-clock work while helping to clean up and recover victims at Ground Zero.

The struggle of the Long Island first responders led to the development of the Stony Brook WTC Wellness program. In 2002, patients at first were just screened and monitored and then in 2005 doctors began treating them. Luft said in the early days of the program SBU Department of Medicine employees would volunteer to treat the patients. Over time the program began to receive financial resources to expand its services.

The Suffolk location of the Stony Brook WTC Wellness Program is located on Commack Road in Commack. Photo from Stony Brook Medicine

Luft said the program follows the cases of approximately 13,000 Long Islanders in both Nassau and Suffolk counties, with one clinic in Commack and the other in Mineola. At first, patients were displaying acute reactions to their exposure. Cases included asthma, upper respiratory disease, sinusitis and gastrointestinal disease, he said, due to the amounts of dust the patients had taken in during their time at Ground Zero.

Over the years, the doctor said patients began developing illnesses such as cancer, but doctors have also seen psychiatric problems such as PTSD and depression.

The responders “had seen people die,” he said. “They were in danger all the time.”

Doctors are also seeing cases of dementia in patients. Luft said one theory is that when a person is exposed to certain toxins it can increase their chances of having dementia. He gave the example where areas with higher pollution have much higher rates of Alzheimer’s.

With studies showing that patients with PTSD have cells that age more quickly, the WTC Wellness Program began monitoring patients.

“We saw something that stunned us, and quite frankly at first we were very skeptical,” Luft said. “We went through a variety of different studies and tests to confirm our results.”

Twenty years after September 11, the doctor said it’s possible that first responders will present with more health issues in the future, but no one can be certain with what illnesses.

The Stony Brook WTC Wellness Program’s Suffolk County office is located at 500 Commack Road, Commack.

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Photo from Deposit Photos

One of the larger centers for the Novavax vaccine trials, Stony Brook University Hospital recruited 376 patients for a potential fourth vaccine against COVID-19 .

Benjamin Luft

The Gaithersburg, Maryland-based company announced earlier this week that its vaccine was effective in 90.4% of the participants in its phase 3 trials, which is typically the last clinical hurdle before approval from the Food and Drug Administration. The trials occurred in the United States and Mexico.

With 30,000 people participating in the clinical study, the Stony Brook participants accounted for about 1.25% of the total study group.

“The quality of our data is among the highest,” said Benjamin Luft, chief investigator of the Novavax trial and director and principal investigator of the Stony Brook WTC Wellness Program.

At its peak, the Novavax trials, which began on Dec. 28, involved 10 to 12 full-time staff at Stony Brook to prepare and administer the vaccines.

“The staff worked extremely hard,” Luft said. “I think everybody takes a great deal of satisfaction in being a small part of this great machine that ultimately produced these vaccines that we all benefit from.”

Novavax reportedly plans to produce as many as 100 million doses of the vaccine per month starting in the third quarter and as many as 150 million per month in the fourth quarter.

The Novavax vaccine, which received $1.6 billion from Operation Warp Speed in 2020, differs from the other three approved vaccines. Pfizer/BioNtech and Moderna use messenger RNA and the Johnson & Johnson vaccine uses a combination of the gene for the spike protein with an altered adenovirus, which causes the common cold.

Novavax, by contrast, uses a piece of the spike protein from COVID-19 to train the immune system to recognize the foreign invader.

Vaccine providers can store the Novavax vaccine, which requires two doses, at typical refrigerator temperatures, unlike the mRNA vaccines, which require ultra cold storage. The Novavax vaccines are usable for up to three months after they are stored.

Luft said the vaccine might have a real benefit in places that don’t have these cold storage facilities.

Earlier one morning this week, Luft received several emails from colleagues in South America who had heard about the trial and knew he was involved.

“They are so excited for their countries that they could get access to such a vaccine,” Luft said.

The clinical trials for Novavax occurred at a time when the original Wuhan strain, which formed the basis for the vaccine, wasn’t the only COVID-19 threat.

“The variants that were in the community were different” during the Novavax trial, Luft said. The vaccine was not retooled for the new variant, which is what made the results so encouraging.

Like the other vaccines, the Novavax vaccine had some side effects, which included fever, head aches and soreness at the site of the injection that went away over the course of a day or two.

At this point, Novavax plans to submit its data for potential approval to the Food and Drug Administration by the end of the third quarter.

Luft expressed his appreciation for the opportunity Stony Brook and the residents in the area who participated in the study had to contribute to this effort.

“I was just so delighted” with the results, Luft added. “It was just so gratifying to be a part of the cog in the great wheel” for a process that proved effective.

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Stony Brook University Hospital. File photo

Most people only think about Lyme disease when taking a hike in a park, but for many doctors, the condition weighs heavily on their minds every day.

Dr. Benjamin Luft, director and principal investigator of Stony Brook WTC Wellness Program, is one of those doctors. He is currently working on two clinical studies examining the disease. One involves those who continue to present symptoms after being treated, and the other study involves Latinos on Long Island who work in the landscaping and agricultural fields.

In a recent phone interview, Luft said the clinical study involving Latinos is a straightforward one, where the aim is to help a population that has been underserved and understudied due to their work schedules. The other study is more involved.

After being bitten by a tick infected with a bacterium called Borrelia burgdorferi, many people with a bull’s eye rash or flulike symptoms may receive treatment and feel better; but there are those who will continue to suffer for a prolonged period, even years, with a variety of complaints like aches, pains and brain fogginess. Luft said at times there may be no clear signs of the disease in the body, but doctors may find evidence of it after thorough neuropsychological exams that can detect subtle abnormalities.

Dr. Benjamin Luft is one of the doctors at Stony Brook Medicine looking for answers when it comes to those who continue to suffer from Lyme disease after treatment. Photo from Stony Brook Medicine

“This study is really geared toward diagnosing and to find ways to be able to monitor the disease,” Luft said, adding in the future his hope is to conduct studies testing new ways to treat Lyme disease.

The doctor said it’s essential to receive a diagnosis because if Lyme disease is left untreated, it can lead to joint swelling, arthritis, neuropathies, meningitis or cardiac problems.

When Stony Brook University recently began making a more significant investment in its imagining facilities, Luft said he saw a chance to find an answer for those with chronic symptoms.

“I thought this is the opportunity to see what is going on in the brain of these patients with using X-ray techniques and radiological techniques which may give us some insight,” he said.

He said with cutting-edge neuroimaging studies researchers can look for evidence of inflammation in the brain which may be a reaction to the infection.

“That would be an important thing to do because it may give us another target for therapy,” Luft said. “A lot of the therapy that we now use is really just geared toward the organism itself, but it’s not really geared toward the body’s reaction to the organism which may also have to be treated in order to alleviate some of these symptoms.”

The doctor has studied Lyme disease for more than 30 years. When he arrived at SBU from Stanford University Hospital, he was involved in work with AIDs and age-related diseases, but he said at the university’s clinic in the 1980s many people complained of Lyme disease problems and there were no effective therapies at the time. Many of the first therapies and treatments used today were developed at SBU, he said, but there have always been people who haven’t responded well to those treatments.

“So that’s been something that’s been bothering me for many years as to why that is,” Luft said.

He said he will present initial data, which is promising, from the clinical imagining study at a conference in Barcelona, Spain, later this month and hopes to get more patients for the clinical study. Those who are interested can call 631-601-5615. Subjects must meet stringent criteria including not having any other disease, having serological evidence of Lyme disease and a clear history that they had the rash.

In addition to Luft’s studies, Dr. Christy Beneri, assistant professor of pediatrics at SBU, and her team are working on a pilot study to look at newer diagnostic tools to establish a better way to diagnose early Lyme disease.

“We also will be doing work on understanding tick epidemiology in our area and working with the local health department to understand potential new tick-borne pathogens,” Beneri said.

Stony Brook Lyme Disease Laboratory has been performing Lyme disease testing on clinical specimens since 1984. Both inpatients and outpatients can have a Lyme ELISA screening test and Western blots confirmatory test at Stony Brook Medicine. Almost 10,000 screenings were done in 2017 at the hospital, which has been actively working with state senators for funding for Lyme disease outreach and research, according to Beneri.

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New one-stop clinic opens in Commack to provide care for 9/11 first responders

First responder John Feal gets a checkup at the Stony Brook WTC Wellness Program center, which opened a new facility in Commack, Nov. 28. Photo from Stony Brook WTC Wellness Program website

Accessing medical treatment on Long Island has become easier for 9/11 first responders.

Stony Brook WTC Wellness Program celebrated the official opening of its new one-stop health clinic in Commack Nov. 28. The program relocated from Islandia to the Stony Brook Medicine Advanced Specialty Care building, located at 500 Commack Road. The move allowed the program to expand from a monitoring facility into a 20,000-square-foot, integrative clinic where World Trade Center responders can receive more comprehensive medical treatment under one roof.

Dr. Benjamin Luft, program director and principal investigator, said the clinic is dedicated to caring for approximately 10,000 patients suffering from illnesses after volunteering at Ground Zero after 9/11. He said the responders suffer from a wide variety of conditions and the new location will provide the medical staff more resources. Among the new services available will be blood testing and imaging, which weren’t available in Islandia and caused patients to have to go elsewhere.

“This is ideal for the World Trade responder patient population, and the reason why is these patients who have been so severely affected by the World Trade Center disaster have a compendium of various abnormalities and disorders which are directly related to 9/11,” Luft said. “These included diseases ranging from psychiatry diseases to respiratory and gastrointestinal problems, to cancer.”

“The program is now a state-of-the-art facility that not only monitors you, but treats you and gives you top-notch medical care all in one facility.”

— John Feal

The doctor said the program has a research team dedicated to studying neurocognitive problems, autoimmune issues and cancer-related illness. The new Commack location has an in-house laboratory that will make accessing patients’ samples and processing them easier. He said many of the illnesses related to the disaster were not initially recognized, and the number of patients has grown approximately 8 to 10 percent each year since the monitoring clinic first opened on the Stony Brook University campus shortly after 9/11.

The day of the Commack grand opening, the Stony Brook WTC Wellness Program honored John Feal, a first responder and founder of the Fealgood Foundation. A Nesconset resident and Commack native, he said having the clinic where he grew up is special to him. Feal and members of his organization worked tirelessly to get the James Zadroga 9/11 Health and Compensation Act passed in Dec. 2010 and again in 2015. The act enables first responders, volunteers and survivors of the Sept. 11 attacks to receive health monitoring and financial aid.

Luft said at first the program treated many patients who lacked medical insurance coverage. “So when they got sick, they didn’t have health insurance or have someone to take care of their acute problems,” he said. “We established our clinic to do that at no additional costs to the patients.”

Feal, who was a patient at the Islandia clinic and recently had his physical in Commack, said he was impressed with the new location.

“The program is now a state-of-the-art facility that not only monitors you, but treats you and gives you top-notch medical care all in one facility,” Feal said.

He said having a one-stop clinic is important to many, especially for those who have become too frail to travel. Aging is an issue as many are now in their mid-50s or older.

“As we get further away from 9/11, the illnesses are getting worse,” Feal said. “One, because of age and, two, because with these illnesses, some latency periods and manifestations in the body take this long.”

The first responder said it was humbling to be honored for his work Nov. 28.

“We’re talking about human life, and I’m never going to apologize for anything I ever said or did, because at the end of the day I only care about helping those who are sick from 9/11,” Feal said. “And so many people are getting sick. It’s not ending anytime soon.”

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