Sickened and Still Waiting for Justice: 9/11 First Responders and Cold War Nuclear Weapons Workers Battle for Fair Compensation

The James Zadroga 9/11 Health and Compensation Act (Zadroga Act) and the Energy Employees Occupational Illness Compensation Program Act of 2000 (EEOICPA) represent two federal reparatory and remedial compensation programs designed to compensate sickened populations unwittingly exposed to toxins while serving the nation. Both programs are, in part, administered by the Department of Health and Human Services, specifically the National Institute for Occupational Safety and Health (NIOSH). As a longtime advocate for sickened cold war-era nuclear weapons workers battling the complexities of the EEOICPA, I have come to realize that the burdensome evidentiary hurdles they have faced over the past ten years will similarly burden 9/11 first responders and survivors in their fight to have cancer compensated under the Zadroga Act. If the Zadroga Act becomes bogged down in the search for scientific certainty regarding which 9/11 heroes will be compensated and cared for, we will not only fail to honor these heroes, but NIOSH will be repeating the same mistakes that sickened nuclear weapons workers have endured for far too long under the EEOICPA.

Currently, NIOSH is still evaluating whether there exists sufficient scientific causality to justify compensating 9/11 first responders and survivors that have developed cancer. In fact, this past July, NIOSH Director John Howard issued a report explaining:

Based on the scientific and medical findings in the peer-reviewed literature reported in this first periodic review of cancer for the World Trade Center Health Program, insufficient evidence exists at this time to propose a rule to add cancer, or a certain type of cancer, to the List of WTC-Related Health Conditions. Although a determination cannot be made to propose a rule to add cancer, or a type of cancer, to the List of WTC-Related Health Conditions at this time, it is important to point out that the current absence of published scientific and medical findings demonstrating a causal association between the exposures resulting from the September 11, 2001, terrorist attacks and the occurrence of cancer in responders and survivors does not indicate evidence of the absence of a causal association. It is expected that the second periodic review of cancer for the WTC Health Program will be conducted in early to mid-2012 to capture any emerging findings about exposures and cancer in responders and survivors affected by the September 11, 2001, terrorist attacks.

This January 2, on the one-year anniversary of President Obama signing the Zadroga Act into law, sickened 9/11 first responders and survivors were faced with a very difficult decision: in order to be considered for possible compensation benefits under the Zadroga Act, these 9/11 heroes would be required to drop any possible private litigation regarding illnesses developed from toxic exposures at the World Trade Center (WTC) site. For those sickened with cancer, the choice was far more ominous since the Zadroga Act does not currently provide compensation benefits for anyone that has developed cancer – and it remains unclear when cancer victims will be covered under the Zadroga Act, if ever.

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In the meantime, while NIOSH continues to investigate the sufficiency of scientific evidence linking the types of toxins 9/11 first responders and survivors were exposed to at the WTC site to the increased incidence of cancer in that population, these sickened 9/11 heroes remain in an ongoing state of limbo.

These sickened heroes wonder how long they will be asked to wait and what degree of compensation, if any, they will ever realize in their lifetimes while their medical expenses worsen with each passing day. This unconscionable uncertainty mirrors the same uncertainty sickened nuclear weapons workers have faced, and continue to face, under the EEOICPA. Department of Energy (DOE) employees, DOE employees of designated atomic weapons employers (AWE) and beryllium vendors were also unwittingly exposed to various toxins including radiation while working at former Manhattan Project facilities throughout the country. Many of the problems these workers and their survivors have faced navigating the EEOICPA deal specifically with how NIOSH's scientists have determined whether radiation exposure could be causally connected to resulting cancers. NIOSH has been conducting a ten-year review of the EEOICPA, examining how it has been implemented and administered. Specifically, NIOSH has been reviewing the scientific underpinnings used to determine compensation decisions for those workers that developed cancer and whether those resulting decisions satisfy the overall goals envisioned by President Clinton and Congress in 2000.

Working with and representing sickened workers and their families for the past eight years, I have come to understand how this kind of compensation program can be derailed from its initial, laudable intent when scientific evidentiary burdens are not properly balanced against program goals and for the people the program was intended to serve. The derailment occurs when the never-ending search for scientific answers to compensation questions in a reparatory and remedial program obscures the fact that it is indeed a reparatory and remedial program. And now, timely compensation looms heavily over NIOSH's decision process regarding the compensation of 9/11 cancer victims. However, I fear that 9/11 first responders and survivors will face a similar derailment if NIOSH fails to utilize the lessons learned from its ten-year EEOICPA review and apply those lessons to the Zadroga Act. Specifically, I am troubled by the putative need for scientific certainty becoming the overwhelming driving force that controls and thereby limits which 9/11 heroes will be compensated. Waiting to find that supposed scientific certainty will inevitably devastate a nation that feels compelled to compensate and care for these sickened heroes now, not in 20 years.

So, how will NIOSH decide whether 9/11 heroes afflicted with cancer will be compensated under the Zadroga Act?

One of the more significant similarities between the administration of the EEOICPA and the Zadroga Act is the creation of an advisory board tasked to investigate scientific issues affecting the disposition of compensation claims. The WTC Health Program Scientific/Technical Advisory Committee (STAC) will “… review scientific and medical evidence and … make recommendations to the Administrator of the WTC Health Program on additional WTC Program eligibility criteria, research needs, and on additional WTC-related health conditions.” Similarly, the EEOICPA's Advisory Board on Radiation and Worker Health (Board) also works with NIOSH to decide compensation issues. The EEOICPA Board is comprised of scientific experts and individuals with the specific knowledge necessary to understand the working conditions DOE and AWE employees were exposed to at former Manhattan Project facilities. The STAC committee is also comprised of scientific experts as well as representatives of the affected 9/11 first responders and survivors. However, it is imperative that the input from those committee members representing the sickened community fully inform the STAC decision-making agenda with direct and specific input from 911 advocates and from the sickened 9/11 heroes themselves.

Decisions about what health conditions will be covered under the Zadroga Act should not be a decision based solely on the current available science; to do so would be to ask our 9/11 heroes to further endure and wait perhaps another 20 years for a final ruling on the cancer compensation question. Reparatory and remedial compensation programs that are designed to provide for and honor individuals who have selflessly served this nation should be administered in a manner that always remembers that justice for those sickened as a result of the selfless call to duty cannot realize justice absent timely compensation. Consequently, 9/11 first responders, survivors and their advocates must be included in every aspect of the STAC committee's agenda in order to fulfill the true goals of the Zadroga Act.

Moreover, NIOSH should take the specific recommendations set forth by EEOICPA Board Chairman and the New York State Laborers' Health and Safety Trust Fund Director James Melius M.D., Dr. P.H. as the most judicious template for how the STAC should be administered. As Dr. Melius explained in his comments to NIOSH, “[d]laying these determinations about WTC-relatedness of cancer until long term follow-up of these cohorts has been completed will not help these individuals and is not compatible with the intent of this legislation to provide high quality medical diagnosis and treatment for WTC-related conditions.” Significantly, Dr. Melius emphasized that the EEOICPA ” … Board hears public comments from many of these people about the financial hardships suffered because of their illnesses. Compensating them many years later only partially alleviates these hardships.”

One of the more significant lessons that NIOSH has learned after ten years of administering the EEOICPA is that reparatory compensation programs that have compensation decisions made within a scientific bubble, without input from other stakeholders and without the constant reminder of why the program exists in the first place sets up the inevitable disconnect between sickened workers and the decision makers – engendering inescapable mistrust and needless suffering from those workers who continue to wait for some semblance of justice and assurance from an indebted nation that they have not been forgotten. NIOSH recently completed its ten-year review of the EEOICPA to facilitate reforms that would better fulfill the original intent of the legislation and the workers it was designed to serve. Among the most significant takeaways from that ten-year review is summed up in the following statement regarding the need to prevent scientific decision making from overwhelming a remedial compensation program.

NIOSH should consider relying on a multi-disciplinary approach … By relying on a broader range of experts to evaluate the data on radiation exposures at a site, NIOSH can take steps to minimize any unconscious bias in the … evaluation process. A multidisciplinary approach would also ensure that NIOSH applies consistent science policies across its programs. NIOSH should recognize that scientific expertise can be used to mask professional bias and take steps to minimize that effect. All professionals have some form of unconscious biases. Because [the Division of Compensation Analysis and Support] is staffed overwhelmingly with health physicists, the biases of that profession dominate NIOSH's evaluations.

Accordingly, NIOSH now recommends that it should “[u]tilize staff 'other than health physicists' when appropriate to guard against 'professional orientation' toward accepting adequacy of techniques.” Taking heed of the lessons learned ten years after the enactment of the EEOICPA is hopefully one way by which NIOSH will not only reform the EEOICPA, but also avoid the EEOICPA's mistakes in serving the critically time-sensitive goals of the Zadroga Act.

Just as those sickened cold war-era nuclear weapons workers continue to battle the EEOICPA's bureaucracy ten years after the inception of the program, the decision makers tasked with the ultimate power to decide the Zadroga Act cancer question must remember that time will become the real enemy. Delay will only serve to frustrate the well-meaning intentions of everyone that has worked tirelessly to enact the Zadroga Act, as well as create a shameful legacy leaving our sickened 9/11 heroes and their families to fend for themselves. The legacy of our nation's commitment and responsibility to care for these heroes must not be undermined by a bureaucracy isolated by a search for supposed scientific certainty that removes those that continue to suffer from the overall equation.

NIOSH Director John Howard received a petition from the New York Congressional delegation this past September requesting ” … an immediate review of new medical evidence showing increased cancer rates among firefighters who served at ground zero and that [he] consider adding coverage for cancer under the Zadroga Act.” The New York Congressional delegation explained:

[w]e feel strongly that there must be a scientific basis for adding coverage for new conditions under the Zadroga Act. However, given the severity of the illnesses reported in The Lancet, we also want to make sure that this and other peer-reviewed studies linking cancers to the attacks are evaluated as expeditiously as possible.

The STAC committee must submit their recommendation regarding this petition to NIOSH Director Howard by March 2, 2012; however, that deadline could be extended to April 2, 2012. As this deadline looms, NIOSH and the New York Congressional delegation must work to ensure that input from 9/11 first responders, survivors and their advocates is fully incorporated within the STAC decision-making agenda without delay. The current makeup of the STAC committee includes representatives from the affected 9/11 community battling illnesses each and every day, but more needs to be done.

If the ultimate decision regarding cancer compensation becomes so insulated and disconnected from the very purpose of the Zadroga Act, then the program itself will serve as a constant reminder of the nation's failure to fully honor the extraordinary courage of our 9/11 heroes; then we will have truly enabled time to become the ultimate enemy of the good.