Public's awareness of 9/11 benefits lags behind availability

An estimated 400,000 residents, first responders, workers and students were exposed to toxins following the Sept. 11 terrorist attack. But some who may be suffering with 9/11-related illnesses have not signed up for programs, including the 9/11 Victim Compensation Fund and the World Trade Center Health Program, because they aren’t aware that they qualify for the benefits.

Which is why state legislators late last month overwhelmingly voted to pass the 9/11 Notice Act, which will require businesses to inform employees who worked in exposure zones in Lower Manhattan and Downtown Brooklyn from Sept. 11, 2001, through July 31, 2002, about their potential eligibility.

Yonkers Assemblyman Nader Sayegh drafted the proposal following the 20th anniversary of the attacks.

"It is nearly 22 years after the terrorist attacks and an utter lack of awareness about the benefits and eligibility for the federal World Trade Center Health Program and 9/11 Victim Compensation Fund means we needed to act,” he said. “The 9/11 Notice Act means that forgotten victims, including downtown office workers, doormen, construction workers, students, teachers, retail workers, delivery people, must be notified of their eligibility status by their ex-employer. No one should be left to suffer from 9/11-related illness and be burdened with overwhelming medical bills when the federal resources are free and available to help them.”

Michael Barasch, the managing partner of the law firm Barasch & McGarry and represents more than 35,000 9/11 responders and survivors, called the legislation “a step in the right direction.”

“I am hopeful that expanding the network will help 9/11 victims and their families access the health care that will save their lives and protect their quality of life,” he said. “The federal government made a promise to never forget the 9/11 community — including by providing them with free, comprehensive health care for conditions related to their toxic exposure on and after 9/11.”

A disproportionately low number of civilians are enrolled in the programs. While 85,490 first responders were enrolled in the WTC Health Program, there were 38,509 civilian participants as of March, according to data from the U.S. Centers for Disease Control and Prevention. Unlike first responders, civilians must have a 9/11-related health condition in order to enroll in the program. About 80 percent of eligible firefighters, EMS workers and other first responders have registered for the programs.

In order to qualify for compensation for the Victim Compensation Fund, individuals must be able to prove they were in the exposure zone and must also have a health condition that has been certified by the World Trade Center Health Program.

'Survivors deserve programs'

Lila Nordstrom, who founded StuyHealth in 2006 to help connect young people with 9/11-related conditions to the WTC Health Program, said many survivors mistakenly believe that only first responders qualify for the programs. Nordstrom, who was a 17-year-old student at Stuyvesant High School on 9/11, added that some may not realize that their conditions  including gastroesophageal reflux disease, asthma and other respiratory illnesses common among civilians – are 9/11-related.

Previous efforts to raise awareness among civilians — including a 2019 initiative in which the city Department of Education sent letters to 19,000 students who attended schools south of Houston St. informing them about their potential health risks — have been challenging, Nordstrom acknowledged. “It has to be a much broader effort” than just one city agency, she told The Chief.

“Survivors deserve these programs,” she added. “I think the government has a responsibility to raise awareness about these resources. I’m hoping that just having some kind of commitment to alerting people will have some sort of effect.”

Oren Barzilay, president of District Council 37's Local 2507, which represents about 4,000 EMS workers and fire protection inspectors, said that the 9/11 Notice Act “will inform employees who were there of their rights and protections from the burden of high healthcare costs for 9/11-related illnesses.”

The bill awaits Governor Kathy Hochul's signature.

clewis@thechiefleader.com