First-responders to 9/11 left out in the cold

Study showing rise in cancer among first at scene at WTC leads workers and politicians to demand more health coverage.

9/11 first responders workers in 2001
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The WTCHP sets up eligibility requirements centred on providing proof of having worked at the WTC site [GALLO/GETTY]

A new medical study has found that first-responders to attacks on the World Trade Center (WTC) ten years ago face an elevated risk of contracting cancer, while the US continues to exclude the disease from a list of conditions covered by federal healthcare programmes in place for the responders and survivors.

The study, published in the weekly peer-reviewed Lancet medical journal, finds, after having allowed for age, race, ethnic origin and secular trends, that those exposed to the WTC site face a “modest excess” of cancer cases, while noting that the years since the attacks are “short for cancer outcomes”.

The report has prompted US politicians to file a petition with Dr John Howard, the administrator of the US federal government’s World Trade Center Health Programme (WTCHP), to have cancer added to a list of conditions already covered under existing laws.

These range from respiratory distress (including a chronic cough that first-responders have come to call the “WTC cough”, linked to prolonged exposure to dust at the WTC site) to sleep apnea, and several mental health conditions, including Post-Traumatic Stress Disorder and substance abuse.

“The Lancet study is solid new information that will help make the case as [the WTCHP] and other medical experts are looking into whether it’s warranted to add coverage for cancers under the bill,” Congresswoman Carolyn Maloney, who co-authored the James Zadroga 9/11 Health and Compensation Act under which the federal government centralised financial and healthcare support for first-responders and survivors, told Al Jazeera.

The Zadroga Act became law in January 2011, more than nine years after the attacks, and establishes a set of rules and procedures under which first-responders and survivors of the attacks can approach the US government for financial compensation and healthcare benefits.

Cancer remained absent from that list at the time of the last review in July 2011.

At the time, Howard noted that this was due to the “absence of published scientific and medical findings demonstrating a causal association”, though he left the door open for cancer to be added at a later date.

The Lancet study was funded by the National Institute for Occupational Safety and Health (NIOSH), the administering body of the WTCHP.

With the petition having been filed by Maloney, other politicians and first-responders, and the constitution of a 15-member technical advisory panel for the WTCHP by the US Department of Health and Human Services on September 8, politicians say there is a high likelihood that the disease will be added to the list.

The Zadroga Act covers two funds: the $1.556bn WTCHP and the Victims’ Compensation Fund (VCF), put in place to provide “compensation for economic losses and harm” resulting from the 9/11 attacks.

It reopens the VCF (previously closed in 2003) and, under new rules passed in August, expands the geographic area in New York City to which the fund applies.

The VCF is controlled by the US Department of Justice, as opposed to the WTCHP, and is administered by Special Master Sheila Birnbaum.

While the newly reopened VCF provides for up to $2.775bn to be disbursed to victims, this includes a stipulation that only $875m (32 per cent) can be disbursed in the first five years (2011 to 2016).

It also stipulates that claimants must withdraw from any pending civil action cases within 90 days of applying for restitution, and that they must waive their right to file any civil action in the future, regardless of whether or not they are ultimately deemed eligible to receive funds under the VCF.

The WTCHP, meanwhile, does allow both first-responders and survivors to have treatment for medical conditions linked to the WTC site paid for by the government, as long as they receive treatment at a network of specified healthcare establishments.

The programme provides no stipulation to allow people who have already been receiving treatment from healthcare professionals not covered in the specified network to receive compensation for costs already incurred, or to continue to receive medical treatment from their existing doctors.

The WTCHP also sets up eligibility requirements centred on providing proof of having worked at the World Trade Centre site, or related sites, for a certain number of hours.

The requirements for volunteers, for example, are to have worked for at least four hours between September 11 to 14, 2001; at least 24 hours between September 11 to 30, 2001 or at least 80 hours between September 11, 2001, and July 31, 2002, according to the Congressional Research Service.

Similar requirements exist for firefighters and police officers, but while they are required to log their hours (working as they do in an official capacity), volunteers would have no such paperwork to fall back in order to prove eligibility for benefits.

Arguments over costs

Criticism of the bill had been loud in the US Congress throughout the legal vetting process, but most opponents were less focused on how the Zadroga Act was limiting liabilities and more on how it encouraged “careless spending” and was not subject to enough oversight, according to at least one senior US senator.

Mike Enzi, senator for Wyoming and one of the more vocal critics of the law, has argued that the NIOSH had failed to provide enough information on funds disbursed in the preceding eight years under 9/11 compensation, and that as such it was in no position to act efficiently as the new single body under which healthcare programmes would be managed.

Maloney, the act’s co-author, counters those claims by pointing to the “numerous cost controls” built into the law.

“[It] is fully paid-for, which means it won’t add a dime to the deficit. We have a moral imperative to help those who are suffering because of 9/11, but it’s also a national security imperative to demonstrate to first responders that if you come to the aid of America in a time of crisis, you will be taken care of.” said Maloney.

“That is anything but careless spending.”

‘Insulting’

John Feal, a first-responder and founder of the FealGood Foundation, told Al Jazeera that as a member of that community he found it “insulting” that it took more than nine years to pass a bill providing healthcare benefits and support.

“As an advocate I understand it, I just don’t agree with it,” he said.

“While I don’t agree with the process, I find that along the way I understand the process and every obstacle and every hurdle that we see along the way, we seek to overcome.

“It just takes a long time, and we lose a lot of really good people, and for us to wait nine-and-a-half years for the bill to pass it’s just utterly ridiculous and as a common-sense thinking person you can’t wrap your arms around it.

“This should have been done years ago,” said Feal.

His organisation provides financial and legal support to first-responders, as well as acting as an advocacy group in Washington.

Feal, who lost the use of his foot in an accident during recovery work at the WTC site, is also unconvinced by the argument that the bill allows for reckless spending.

“I don’t care if you’re a Republican or a Democrat, you cannot point fingers about reckless spending on this bill,” he said.

“At what point do we not put human life before the almighty dollar? It’s easy for them to point fingers, but it’s a lot easier for the American people and the 9/11 community to point fingers at reckless spending by the United States federal government.

“Or at two wars that we shouldn’t be in, which sank our economy.

“Listen, at the end of the day, these men and women didn’t get help for so long because of economics. We’re expendable. And the almighty dollar outweighs the human heartbeat, which is sad and depressing.”

Feal is determined to continue to fight for the interests of the first-responders, who he says are owed “a debt of gratitude … for their heroic actions”.

Next up? Fighting to have the advisory board add cancer to the list, and to provide for more funding to provide for the treatment and compensation of cancer patients who contracted the disease through exposure at the site, Feal said.

“Listen, we’re at ten years. And God forbid if 9/11 happens again, there’s going to be another set of heroes to step forward.” He said.

“And I hope they take care of those heroes, because I’d hate to see another group of thousands of great Americans get sick like this group. I hope they treat them right.”

Follow Asad Hashim on Twitter: @AsadHashim

Source: Al Jazeera