Will New York Extend a Lifeline to 9/11 Survivors?

“When we looked at the data it showed that 80 percent of the first responders rightfully recognized their eligibility and applied, but when we looked at everybody else in retail, in the health field, in the financial sector, we see only eight percent had responded — that’s a serious problem.” — Assemblyman Nader J. Sayegh, 9/11 Notice Act co-sponsor.

By Bob Hennelly

Last month marked the 21st anniversary of the end of the official clean-up in lower Manhattan of the 9/11 World Trade Center attack and the fires that persisted for months after the collapse of the Twin Towers. In the years since, more people have died from their exposure to the toxic air than the close to 3,000 that perished the day of the attack.

Now, as the legislative session winds down in Albany, Assemblyman Nader J. Sayegh (D-Dist. 90) and State Senator Brian Kavanagh (D-27 Dist.) are pushing for passage of their 9/11 Notice Act (A9715/S9551) which requires employers with 50 or more employees who may have had to work in the federally-defined disaster zone to be notified about the existence of the World Trade Center Health Program and their eligibility for compensation from the 9/11 Victim Compensation Fund.

After the 9/11 World Trade Center attack, former Gov. Christie Whitman, as EPA administrator, offered reassuring statements that the air was “safe” to breathe. But a 2003  EPA’s Inspector General report found the EPA 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).”

“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.”

In the years since the attack and the completion of the clean-up, Congress passed the James Zadroga 9/11 Health and Compensation Act which created the 9/11 Victim Compensation Fund and the 9/11 World Trade Center Health Program.  Eligibility for the compensation and health program was extended to both first responders and the civilian survivors, those who lived, worked, or went to school in the FEMA-defined disaster zone.

First responders who can establish participation are entitled to an annual health screening for the rest of their lives. Civilian survivors have to manifest symptoms first in order to be enrolled in the 9/11 WTC Health Program.

In a recent phone interview with Work-Bites, Assemblyman Sayegh said he was motivated to introduce the bill because of the vast disparity in the percentage of first responders that have signed up for the programs as compared to the civilian survivors who lived, worked, or went to school in the FEMA-defined zone which extends south of Houston throughout lower Manhattan and includes portions of western Brooklyn.

SURVIVORS LAG

“When we looked at the data it showed that 80 percent of the first responders rightfully recognized their eligibility and applied, but when we looked at everybody else in retail, in the health field, in the financial sector, we see only eight percent had responded — that’s a serious problem,” Sayegh said.

According to the 9/11 WTC Health Program website, close to 85,500 first responders are enrolled in the health plan as compared to just over 38,500 civilian survivors. Estimates are that close to 100,000 first responders came to the site from around the country as well as internationally to aid in the recovery and reclamation effort. Roughly 400,000 survivors lived and worked in the zone, including thousands of civil servants who were required to return to their offices in the hot zone at buildings like 1 Centre Street and 250 Broadway.

Assemblyman Sayegh recalled the underappreciated plight of the survivor population first hit home for him at a press conference when an executive from a lower Manhattan financial services company confirmed that eight of his 15 employees were suffering from 9/11 WTC-related cancers and that some had already died as a result.

“There’s been a great deal of focus on the effects of 9/11, particularly on the first responders. As someone who was here in New York on 9/11, we all witnessed their heroism and subsequently understood the effects on people who worked on the site,” said Senator Kavanagh. “But many, many other people were living and working downtown, and the federal government prematurely announced the air was safe to breathe and that people should return back to the neighborhood and so there are ongoing health effects, and we feel people are not fully aware of these programs.”

EXTRA EFFORT

Kavanagh continued, “The best way to make sure that they are aware is to create a focused notification program and obviously to work with employers who have access to the contact information to make sure people realize the risk they have and the services that are available.”

Initially, the legislation referenced only the 9/11 Victims Compensation Act program which is limited to lower Manhattan, south of Canal Street. 9/11 advocates suggested the bill also include reference to the 9/11 WTC Health Program which encompasses a larger territory that includes lower Manhattan, south of Houston and portions of western Brooklyn, as defined by the FEMA 9/11 disaster zone map.

“I am happy that the sponsors of the bill made the changes we suggested to make sure that there was notification about the World Trade Center Health Program in addition to the 9/11 Victim Compensation Fund,” said Ben Chevat, executive director of 9/11 Health Watch, a non-profit supported by labor. “It’s important to notify the community of the potential issues with respect to the toxic exposures so we can learn more and get a better handle on what’s happening.”

“We can and must do more to locate, educate and inform forgotten victims, especially all the many retail, office and hospitality workers and other non-responders who were encouraged to return to the area because the ‘air was safe,’” said Michael Barasch, a leading 9/11 WTC benefits attorney. “It was not safe. Tens of thousands of New Yorkers with eroding health have learned that the hard way.”

Barasch continued, “The 9/11 Notice Act is a crucial new piece of legislation that can make a real difference in the lives of those affected by the toxic dust, to avoid being crushed under the weight of medical debt. Families of deceased victims could be reimbursed for years of medical costs and lost wages under the federal act. Let us support the effort to find forgotten victims and provide them with a lifeline.”

QUESTIONS LINGER

Lila Nordstrom was a senior at Stuyvesant High School, a public school adjacent to the WTC site, on 9/11. She was one of 19,000 K-12 public school students who were sent back to dozens of schools within the FEMA disaster zone. Nordstrom founded StuyHealth, a non-profit advocacy group, and is the author of the book Some Kids Left Behind: A Survivor’s Fight for Health Care in the Wake of 9/11.

“Anecdotally, we know that everyone who went to school in lower Manhattan after 9/11 seem to have a lot of classmates who got cancer young,” Nordstrom told Work-Bites. “There are also widespread health issues that initially present as minor and just become increasingly expensive and difficult to treat over time like all the gastrointestinal and respiratory issues that start off with a seemingly minor thing like a cough. You get out of breath more easily. You have bad heartburn, but you think maybe that’s your job — that it’s not 9/11. But you end up with a digestive system that’s always irritated. By the time you get really sick you think it’s your fault.”

Nordstrom applauds Albany’s efforts at trying to loop in the 9/11 WTC survivor population. “These kinds of connections get harder and harder to make over time, so the longer you wait to do something like this the harder it gets to do,” she said. “That’s what we learned when the Department of Education went about trying to notify all of those former students and they couldn’t find most of them 15 years later when they finally got around to sending a notice.”

In addition to the 19,000 public school students, there were thousands of private school and college students at places like the Borough of Manhattan Community College and Pace University during the relevant period.

Nordstrom believes “any organization that required people to attend classes in the exposure zone after 9/11 should also be considering notifying everyone — at least make the good faith effort to do that even though it can be challenging with young people because they are the ultimate transient population.”

The former Stuyvesant High School student added that as part of the outreach, potential participants should be told that the 9/11 WTC Health Program is a national program open to those who no longer reside in New York City.

FUNDING GAP REMAINS

Back in December, 9/11 World Trade Center advocates were dealt a setback. The $3.7 billion appropriation needed to fully fund the 9/11 WTC Health Program until 2090 was reduced to just $1 billion during the rushed negotiations over the $1.7 trillion Omnibus spending bill just before the Democrats lost control of the House of Representatives.

Sen. Kirsten Gillibrand (D-NY), one of the lead sponsors of the 9/11 Responder and Survivor Health Funding Correction Act that would fully fund the program, says the bill is essential 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.”