On Sept. 11, 2001, 749 residents of New Jersey perished in the attack on the World Trade Center. Today, over 10,000 first responders and survivors from our state are enrolled in the World Trade Center Health Program as a consequence of their exposure to the air in lower Manhattan and portions of western Brooklyn.

In the immediate aftermath and in the several months of the clean-up that extended into May of the following year, New Jersey first responders, volunteers, commuters, students, and business owners joined the residents in reanimating a badly wounded lower Manhattan.

A fear of a second terrorist strike and the continued presence of the military defining the perimeter were part of the atmospherics for the people working the pile for human remains and the civilians trying to go about their lives in what felt like a war zone.

“SAFE TO BREATHE”

Three days after the 9/11 attack, former New Jersey Governor Christie Todd Whitman, then head of the Environmental Protection Agency, told reporters that “the good news continues to be that air samples we have taken have all been at levels that cause us no concern.”

Two years after 9/11, a review by the EPA Inspector General found the EPA “did not have sufficient data and analyses to make such a blanket statement,” as “air monitoring data was lacking for several pollutants of concern.”

Moreover, the OIG learned that it was President George W. Bush’s White House Council on Environmental Quality (CEQ) that heavily edited the EPA press releases “to add reassuring statements and delete cautionary ones.”

Even though samples taken indicated asbestos levels in Lower Manhattan were between double and triple EPA’s limit, the CEQ downplayed the readings as just “slightly above” the limit the EPA IG found.

And when the EPA’s Inspector General tried to identify who had actually written the misleading press statements, they “were unable to identify any EPA official who claimed ownership” because investigators were told by the EPA Chief of Staff that “the ownership was joint ownership between EPA and the White House” and “final approval came from the White House.”

“She also told us that other considerations, such as the desire to reopen Wall Street and national security concerns, were considered when preparing EPA’s early press releases,” according to the EPA’s Inspector General.

GENERATIONAL FALLOUT

Today, thousands of New Jersey residents are afflicted with multiple ailments. In the years since, in addition to often struggling with PTSD, they have had to navigate bureaucracies that can be non-responsive to abusive. And then there is our confiscatory healthcare system that can burn months and even years in delayed treatments these sometimes terminally ill folks just don’t have.

A common feeling among this 9/11 WTC cohort is that the system designed to “help” them is dominated by red tape that seems likely to hasten their demise. Like the veterans who were ordered to charge into atmospheric atomic testing or were exposed to Agent Orange during Vietnam, our system is at best ambivalent about their plight and sometimes downright hostile.

Last year, the New York Times reported that the World Trade Center Health Program had confirmed 4,610 program participants had died since the attack “although the program does not collect information on cause of death” adding that “some health officials believe many died from Sept. 11-related illnesses — and that the toll is in fact higher, given the likelihood that many people have died who were not enrolled in the program and did not know their illness was Sept. 11-related.”

Currently, 86,000 first responders, close to 95 percent of the cohort, are enrolled in the WTC Health Program. Over 39,000 civilian “survivors” are enrolled, a small fraction of the people that were present south of Houston Street or in the western portion of Brooklyn that defines the FEMA exposure zone.

Under the terms and conditions of the James Zadroga 9/11 Health and Compensation Act, first responders are entitled to lifetime annual screening whereas civilian survivors, including civil servants who had offices in the zone, have to exhibit symptoms first.

The late Dr. Joseph Fennelly, who served for decades as the chairman or co-chairman of the Medical Society of New Jersey’s bioethics committee, told me in 2019 that “from an ethical standpoint, there’s no question” that survivors should have the same unfettered access as first responders to regular screening without having to be symptomatic as a prerequisite.

“You absolutely want to try and catch cancers before they are symptomatic,” Fennelly said. “This is part of the zeitgeist of medicine moving towards prevention.”

A 9/11 CASTE SYSTEM?

Attorney Michael Barasch, a leading attorney representing 9/11 victims, agrees. “It’s outrageous that the 400,000 civilians, including downtown office workers, residents, students and teachers, are treated differently than the 100,000 first responders,” he said. “After all, they were all breathing the same toxic dust. Not surprisingly, they are all being diagnosed with the same illnesses.”

Barasch said that without free annual checkups, many of these survivors won’t learn about the risks they face. “As a result, most of them have no idea that there is a presumption linking 68 cancers to the toxins,” he said. “If they don’t see a doctor from the health program, they likely will never connect the dots. It’s time to stop treating the survivors in the 9/11 community as second-class citizens.”

Back in 2020, at a 9/11 WTC Health awareness program at the Borough of Manhattan Community College, comedian Jon Stewart, a 9/11 first responder advocate, told the audience that civilian survivor also needed to avail themselves of the WTC Health Program because they had brought back the neighborhood from its “tomb” status.

“I just want to remind everybody—as you walked into the auditorium tonight did you see what’s going on outside in Tribeca? Did you feel the vibrancy on the street? Did you see the families and people walking their dogs—going to restaurants and generally living their lives in an incredibly engaged and vital fashion?” Stewart asked the audience. “That wouldn’t have happened without the courage of the survivors and students who stayed here and didn’t allow this terrible act to drive them from their home.”

Even before residents of lower Manhattan were let back into the WTC zone, small business owners like Anne-Marie Principe, 64, of Cliffside Park, were permitted with National Guard escorts to assess the damage done to their businesses.

Principe is enrolled in the World Trade Center Health Program and has spent the years since the attack as an advocate for the 9/11 first responder and survivor community. For 15 years before the towers collapsed, she had a successful talent and modeling agency on Greenwich Street in lower Manhattan which she had to shutter a year after the attack.

“It had been a great little business—but we lost all filming in New York City to Canada and there were no fashion shows—no Fashion Week,” Principe told InsiderNJ. “We lost the pulse of the city—that was the toughest thing—New York City was just such a sad place for at least a year.”

Principe, who grew up in Little Ferry, led the New York From the Ground Up, a 9/11 small business group that helped make the federal agencies like HUD more responsive to the community. She was named a Woman of Distinction by the League of Women Voters and was an honorary co-chair of the Congressional Small Business Advisory Board of NYC.

She currently leads Affinity Healthcare Advocates, a Montclair based non-profit committed to “ensuring the 9/11 community and veterans get the health care services they need” by “bringing providers, patients and functional medicine together to help improve health and well-being.”

As a WTC Health Program participant and a survivor, she knows just how challenging the health care bureaucracy can be to navigate.

“I am currently in remission from breast cancer,” she told InsiderNJ. “I have numerous other conditions including restrictive small airway disease, asthma, neuropathy, and chronic laryngitis. In 2005, I had neurosurgery to remove a growth in my brain.”

Principe’s daughter, who will turn 27 Sept. 10, has been a part of the 9/11 WTC health Program since she turned 12 and has had two episodes of pre-cancerous cells.

Principe’s non-profit is working to improve the performance of Managed Care Advisors, which is owned by Sedgwick, which last year took over administering the WTC Health Program’s national program. She says the company failed to staff up its call centers and care managers leading to weeks and months of delays. Her non-profit is also looking to promote innovations in earlier diagnosis and disease prevention for the beleaguered 9/11 community.

NO TIME TO BURN WAITING

Earlier this year, Sedgwick’s poor performance caught the attention of New York Senator Kirsten Gillibrand and Senate Majority Leader Chuck Schumer.

“Through our meetings with 9/11 advocates, constituent complaint, and CDC staff briefings, it has come to our attention that the NPN services Sedgwick provides through MCA to WTCHP members do not meet the standard and quality of care expected for our nation’s 9/11 first responders and survivors,” Gillibrand and Schumer wrote.

“By any interpretation, the performance of Sedgwick since it took over responsibilities as the National Provider Network has not met their contract requirements to provide services and benefits promised to responders and survivors under the Act,” wrote former CDC Director Dr. Rochelle Walensky, which oversees the WTC Health Program, back in November.

Emails to Sedgwick officials were not returned.

Back in 2019, while I was writing for the Chief-Leader newspaper, that covers the civil service, I heard from several female first responders that as a consequence of women making up such a small percentage of the 9/11 WTC Health Program, female reproductive cancers and other gender specific health issues weren’t getting sufficient attention. That of course, would have consequences for female survivors enrolled in the evidence-based health program.

Currently the WTC Health Program first responder cohort includes 71,000 men and 10,100 women. The enrolled survivor population includes 17,500 women and 20,300 men.

“This is a problem in general, with the emergency services particularly with women firefighters because of the very small numbers nationwide and especially in New York,” said retired FDNY Capt. Brenda Berkman, who served at the WTC site from 9/11 until the clean-up was completed in May 2002. “At the time of 9/11, there were about 25 women in the firehouse out of 11,000 firefighters.”

“If I am doing this [medical] investigation and we are using men as our research subjects and then think we will apply that [research] to women, that’s a medical problem, that’s a scientific problem that has affected women’s medical treatment across the general population that is particularly acute in the emergency services,” Ms. Berkman said. “When you think about it, if the scientists are missing the general population of women, who are more than 50 percent of people on the earth, what makes you think they will focus on a subset who in the case of the Fire Department are less than 1 percent.”

Over the years, women’s-health advocates around the world have documented a pronounced disparity between the sexes in terms of their participation in clinical trials and medical research. The 9/11 WTC Health Program is trying to close that gender gap years in the making.

It wasn’t until January of this year the 9/11 WTC Health Program finally added all types of uterine cancer, including endometrial cancer, to the List of WTC-Related Health Conditions List.

CLOSING THE 9/11 GENDER DIVIDE?

“This rule is significant as it not only provides access to life-saving care and treatment, but also recognition for the women who sacrificed so much on and after 9/11 that their diagnosed uterine cancer is a WTC-related health condition,” said WTC Health Program Administrator John Howard, M.D in a statement. “With the publication of this rule, a critical gap in coverage for women in the Program has been eliminated. All types of cancer, if determined to be related to 9/11 exposures, are now covered by the World Trade Center Health Program, providing women equal access to the treatment they deserve.”

Lila Nordstrom was a senior at Stuyvesant High School, which was adjacent to the World Trade Center and is a participant in the 9/11 World Trade Center Health Program. She started StuyHealth, a non-profit committed to outreach to the thousands of young people who were ordered back into dozens of schools in the toxic zone and now face an uncertain future. Some of their peers have already been diagnosed with cancers and other WTC related ailments.

Her book Some Kids Left Behind, Nordstrom chronicles how her 9/11 WTC survivor experience led to her activism.

“The World Trade Center Health Program faces two obstacles to serving woman equitably,” Nordstrom told InsiderNJ. “One is that, like any limited health program, it relies on medical data to make determinations about which conditions it will cover and the existing data on 9/11 exposure skews heavily male. There is almost no data on women’s health conditions, including many reproductive and autoimmune concerns that common sense would tell us are likely linked.”

Nordstrom continued. “The second is that the bulk of their female patients are in the survivor program, where monitoring is only provided to people with certified conditions. This means the program’s data is forever reproducing the same inequalities we see in earlier data. One or both of these will need to change if women have any chance of getting equitable treatment by the program.”

Back in 2016, Gov. Whitman “admitted for the first time she was wrong” in an interview with the Guardian newspaper.

“Speaking to the Guardian for a report on the growing health crisis…., Whitman made an unprecedented apology to those affected but denied she had ever lied about the air quality or known at the time it was dangerous,” the newspaper reported.

“Whatever we got wrong, we should acknowledge, and people should be helped,” she told the Guardian. She said she still “feels awful” about the tragedy and its aftermath.

THE STEEP PRICE FOR COMMERCE

All these years later there’s still a lot that’s not publicly known about what officials knew and when they knew it about the killer cloud that’s still killing. There was no daylight between the Bush White House, the EPA, and the City of New York when it came to the air being “safe to breathe.”

Back in February, Rep.  Jerrold Nadler (D-NY) and Rep. Dan Goldman (D-NY) wrote and asked Mayor Eric Adams to release the documents generated by the Giuliani administration that would shed light on what the city knew about the air quality in lower Manhattan in the aftermath of 9/11.

A similar written Congressional request was made on Mayor de Blasio’s watch to no avail.

“Over 6 months have passed since we called on the Adams administration to release what the Giuliani administration knew about the toxins at Ground Zero while they were claiming it was safe for New Yorkers to return,” said Representatives Nadler and Goldman in a statement responding to my query. “We remain unsatisfied with the City’s failure to make these documents available, which are essential to advancing medical research for those suffering with 9/11 related illnesses. Our 9/11 families can’t wait any longer. As we approach yet another year since that horrific day, we must deliver the truth for our survivors who need answers.”

“As a former first responder who worked the site at Ground Zero, Mayor Adams is unwavering in his support of the 9/11 victims, first responders, families, and survivors,” Mayor Adams responded. “We are aware of requests to produce City documents on the aftermath of the attacks, which would require extensive legal review to identify privileged material and liability risk and are exploring ways to determine the cost of such a review.”

It’s always been about the money.