One year ago, the responder and survivor community held yet another 9/11 rally at the World Trade Center site, calling on both the U.S. House of Representatives and Senate to pass the James Zadroga 9/11 Health and Compensation Act. After a very long battle and much uncertainty, we are in a better place today. The federal government finally recognized its responsibilities to these communities by passing the bill at the close of the legislative session on Dec. 22, 2010, with the New York delegation — U.S. Representatives Jerrold Nadler, Carolyn Maloney, Peter King, Anthony Weiner and Eliot Engel, and Senators Kirsten Gillibrand and Chuck Schumer – leading the way.
The act will ensure that first responders, survivors (residents, local workers and students), and volunteers suffering health problems as a result of the 9/11 terrorist attacks receive specialized health care and the compensation they need and deserve, for the next five years.
But as with any new bill, there are issues that need to be resolved before it goes into effect this July 1. For example, the World Trade Center health program will be administered by someone who has not yet been appointed. The appointment of Dr. John Howard, which has not (yet) happened, would ensure continuity of leadership in the implementation of the legislation. Over the years, Dr. Howard has met with, and carefully listened to, the concerns of diverse coalition members of the survivor community.
The 22 W.T.C.-related health conditions for responders and survivors that are currently covered by the W.T.C. health program are listed below. A process will be implemented to determine if there will be any revisions.
Aerodigestive disorders (1) Interstitial lung diseases; (2) Chronic Respiratory Disorder – Fumes/Vapors; (3) Asthma; (4) Reactive Airways Dysfunction Syndrome (R.A.D.S.); (5) W.T.C.-Exacerbated Chronic Obstructive Pulmonary Disease (C.O.P.D.); (6) Chronic Cough Syndrome; (7) Upper Airway HyperReactivity; (8) Chronic Rhinosinusitis; (9) Chronic Nasopharyngitis; (10) Chronic laryngitis; (11) Gastroesophageal Reflux Disorder (G.E.R.D.); and (12) Sleep Apnea Exacerbated by or related to the above conditions.
Mental health conditions (1) Post Traumatic Stress Disorder (P.T.S.D.); (2) Major Depressive Disorder; (3) Panic Disorder; (4) Generalized Anxiety Disorder; (5) Anxiety Disorder (not otherwise specified); (6) Depression (not otherwise specified); (7) Acute Stress Disorder; (8) Dysthymic Disorder; (9) Adjustment Disorder; and (10) Substance Abuse.
At this time, treatment for cancer is not covered. However, the act requires the initial review of cancer as a possible addition to the list of W.T.C.-related conditions on or about July 8, 2011. The consideration of adding cancers to the list of approved conditions needs to be expedited, especially for those cancers that are most strongly correlated with environmental exposure through the inhalation, ingestion and other exposure to carcinogens. We are concerned with the long lag between disease diagnoses, data collection, research and approval.
To date, most studies have focused on first responders and not others who continued to live and work Downtown in the aftermath of the 9/11 terrorist attacks. Therefore, any disease that is included for responders should be included for survivors as well.
There are currently three W.T.C. Centers of Excellence that provide specialized screening/monitoring, treatment and medication in New York City: (1) Fire Department of New York (F.D.N.Y.) – for fire fighters and allied programs; screens, monitors and treats. (2) Mount Sinai Consortium: W.T.C. Medical Monitoring and Treatment Program (M.M.T.P.) – for rescue/recovery/cleanup workers; screens, monitors and treats. (3) W.T.C. Centers of Excellence (E.H.C.) – for local residents/local workers/students/children; screens, monitors and treats. And then there is the W.T.C. Health Registry run by the N.Y.C. Department of Health and Mental Hygiene (N.Y.C.D.O.H.), which is closed for new enrollment. It is for local residents, workers, rescue, and recovery workers. It does periodic questionnaires and provides no medical treatment.
Children are particularly vulnerable to environmental health effects. Children who were attending school in Lower Manhattan in close proximity to the W.T.C. might be at risk. It is critical that the Science Advisory Committee take steps to address the unique needs of children and adolescents. Since continuity of care is important to the well being of the patients, with a need to retain specially trained, dedicated doctors and staff, it is especially important to continue funding for the W.T.C. pediatric program. This includes keeping a pediatrician, pulmonologist, child psychologist, and development doctor on staff.
The advisory committee to the W.T.C. Health Program Scientific/Technical Advisory Committee includes two representatives of certified-eligible W.T.C. survivors. It is important that a resident that has lived and still lives in the W.T.C. vicinity is appointed. No amount of research can substitute for firsthand experience.
The $1.8 billion out of the total $4.3 billion act that is allocated for health funding needs to be spent on treatment, medicine and research. It is important that it not be dwarfed by record keeping costs and barriers to care.
The act also reopens the Victim Compensation Fund (V.C.F.) of 2001 with $2.5 billion of financing. The Special Master has not yet been appointed. Since Kenneth Feinberg, who ran the original V.C.F., is still overseeing those affected by the oil spill in the Gulf of Mexico, U.S. Justice Department officials have recently interviewed three other lawyers. One of the candidates, Blake Chisam, was a committee staffer who had helped craft the compensation legislation and guide it through a House of Representatives committee.
Claims may not be filed until the regulations are updated, which is supposed to begin this July. The Special Master will decide the amount of each award. At this time, the V.C.F. only provides compensation for physical harm or death. Non-responders (the survivor community) are also eligible if they meet all the requirements, which have not yet been determined.
As did the public hearing by the National Institute for Occupational Safety and Health on March 3, the Special Master needs to address the questions related to the V.C.F. However, instead of just public comment, it would be useful to have an interactive session where people’s specific questions can also be answered. This event should be held in Lower Manhattan.
Catherine McVay Hughes is Vice Chair of Manhattan Community Board 1, Chair of the C.B. 1 W.T.C Redevelopment Committee, member of the Community Advisory Committee for the W.T.C. Environmental Health Center, the W.T.C. Health Registry and the Health & Hospitals Corporation Gouverneur Hospital. She organized the first Asthma Day ever in Lower Manhattan after 9/11 in spring 2002 with NYU and Bellevue.
