at last $2 million more per year for basic registry functions for the intended 20 year life of the project. We are very pleased with the response to the registry in the first 8 weeks of enrollment. More than 10,000 people have completed the telephone interview. Another 5,000 have preregisted, and these numbers continue to increase each day. We are also reaching tens of thousands of others for whom we already have contact information. The registry has a Federal certificate of confidentiality ensuring protection of individual information from subpoena or Freedom of Information Act requests. The registry is the most recent of many activities conducted by the health department following September 11. These include: Syndromic surveillance to identify clusters of illness; inspection of food distribution, mandated washing stations; emergency department monitoring for injuries; rescue worker injury and illness monitoring; community needs assessment of Lower Manhattan; indoor air quality assessment. And the department also implemented Project Liberty, a FEMA funded crises counseling and public education program. Project Liberty has assisted more than 900,000 New Yorkers effected by September 11 serving a population ethnically diverse and similar to the city as a whole. Project Liberty is scheduled to end on December 31st of this year. We are hopeful for an extension so that the fire and education department programs can continue. We thank you for your interest and support. However, much more needs to be done both to address the needs of those still suffering from the effects of the attack and to ensure that we are as prepared as we can be. The city continues to ask the administration and Congress to provide bioterrorism and Homeland Security funding based on risk and consequence. We were the target of two of the four planes hijacked on September 11. We were the target of four of seven anthrax-laden envelopes sent in the fall of 2001. And we are the target of most of the terrorist chatter that mentions a specific location. But despite having more than half of the Nation's recent attacks and having more than half of the risk of future attacks, we receive less than one fortieth of the Federal dollars for bioterrorism preparedness. In fact, per capita New York City ranks a shocking 45th out of the 54 jurisdictions receiving bioterrorism funding. We have asked the administration and Congress for more than $900 million for emergency preparedness, $100 million of which is for the health department. And as I noted before, the WTC Health Registry, our best chance to know the health effects of September 11 and most effectively target long term interventions has a large funding gap in the out years. Thank you for your interest and continued support. I will be happy to answer question. [The prepared statement of Commissioner Frieden follows:] Testimony Thomas R. Frieden, M.D., M.P.H. Commissioner, New York City Department of Health and Mental Hygiene before the House Committee on Government Reform Subcommittee on National Security, Emerging Threats, and International Relations Assessing Sept 11th Health Effects: What should be Done? October 28, 2003 Mount Sinai Medical Center Good morning. I am Dr. Thomas Frieden, Commissioner of the New York City Department of Health and Mental Hygiene. I want to thank Chairman Shays, the Committee, and especially Congresswoman Maloney, for holding these hearings in New York City to discuss the health affects of the World Trade Center disaster and what is being done to assess their impact. I am pleased to have the opportunity to be here, and in particular, to describe our progress with the World Trade Center Health Registry, which I believe will be key to understanding the extent of these health effects. The immediate health effects of the tragic events of 9/11 include the deaths from the terrorist attack of nearly 2,800 New Yorkers, in addition to the passengers and crew of the two airplanes that were deliberately crashed into the World Trade Center towers. Our efforts now are focused on the many people who may experience long-term health problems as a result of the events of 9/11. The World Trade Center Health Registry is a critically important effort to evaluate the short- and long-term health effects to both physical and mental health that may have resulted from exposure to the 9/11 disaster. The Registry, a comprehensive, strictly confidential health survey of the most highly exposed people will be used to assess the possible long-term health effects of the disaster in different groups including those who were in close proximity to the World Trade Center site on 9/11/2001 and those who were exposed as recovery and cleanup workers, residents, and students in the ensuing weeks as the fires burned. Significant findings will be shared as soon as they become available, and reports will be posted on the Registry website every three months. We intend to track the health of persons who enroll in the Registry for up to 20 years. We hope to contact participants every three to five years to inquire about their health as well as to undertake specific, focused studies, resources permitting. The World Trade Center Health Registry is unique, in that it is the only project that will allow comparisons across groups, and facilitate long-term follow-up of a large, population-based cohort that includes people with a wide range of exposures and health histories. It is our best chance to find out the true incidence and spectrum of health effects resulting from 9/11. Let me be clear about what the Registry is and what it is not. It is a systematic evaluation that should allow us to make conclusions about the health effects of 9/11, both for those who participate in the registry, and those who do not participate. It is not an attempt to identify and monitor every exposed person. It also is not a telephone diagnostic program intended primarily to find people with medical problems and provide care. Clinical evaluation of those most affected cannot tell us about rare effects, nor can it indicate the rate of illness. The Registry will be able to identify syndromes and conditions associated with exposure to the disaster, and help determine what is and is not associated with the disaster. The Registry provides the only comprehensive information available to put the clinical studies in perspective. We need both the detailed clinical evaluation that is provided by Mount Sinai, NYU, and others; as well as the comprehensive survey approach the Registry provides. This will provide information to support evaluation and treatment regimens. We will be able to identify who is at risk and what kind of exposure is more likely to put people at risk so that people can be identified and receive appropriate screening and treatment. Findings will be available to the participants, the general public, and the medical professions to help their evaluation and treatment of exposed persons at risk – whether or not they are in the Registry. The Registry allows us a pivotal opportunity to evaluate the health of people who were closest to the site on 9/11 and in the subsequent months. It allows for understanding of various levels of exposure to dust, fumes, and debris, and provides information on both physical and mental health problems that may occur. The larger the number of eligible people who enroll in the Registry, the more valuable the project will be in terms of delineation of long-term health effects of 9/11 and identification of possible subgroups needing further evaluation and treatment. It will allow us to compare the health effects of people who worked for weeks on the burning pile, people who worked in office buildings in lower Manhattan during the Fall of 2001, and residents who returned to live near the World Trade Center site while the fires still burned, with those experienced by lessexposed persons, including those who were in lower Manhattan only briefly on 9/11 and never returned, or residents who did not come back until after the fires were out. The Registry is the most systematic approach currently available to evaluate the possible health effects from 9/11. It does not depend on selected sub-populations, but rather encourages all eligible persons to participate. Findings from the Registry will allow us to put in perspective the important clinical data from medical evaluation studies conducted by Mount Sinai, the Fire Department, NYU, New York State, and others. The Registry will enable DOHMH to conduct targeted surveys and investigations based on the more general findings from the larger enrolled population. It may also facilitate the future development of effective treatment regimens for these possible health effects. The Registry is a collaboration between the New York City Department of Health and Mental Hygiene, the federal Agency for Toxic Substances and Disease Registry (ATSDR), the Federal Emergency Management Agency (FEMA), and New York City community and business organizations. In July 2002, FEMA provided start-up funding for the Registry to ATSDR; ATSDR contracted with RTI (Research Triangle Institute) International to conduct outreach, data collection, and data management. During this period, DOHMH and ATSDR, with the assistance of a Scientific Advisory Committee representing a wide range of researchers and recognized exports from the scientific and medical community, have been designing this complex project that is unprecedented in size and scope. The development of the criteria, the questionnaire, and methodology for data collection all required extensive scientific peer and the human subject review required for all federally funded research to assure the protection of human subjects of research. The DOHMH is responsible for overall project management, oversight, and dissemination of findings from the Registry, in close consultation with our partners and our scientific Advisory Committee. ATSDR has committed funding of $1 million per year for project years two through five to support specific WTC Health Registry core functions, including database maintenance, location updates of 25% of registrants per year, and data analysis and reporting, including a quarterly report to be posted on the Registry website (www.wtcregistry.org). We are also providing a resource guide to participants and others to help identify evaluation and treatment sources. However, ATSDR has not received and therefore cannot commit funding for follow-up and registry matching activities, which are essential to the goals of this project. Specifically, the following unfunded activities are vital to the WTC Health Registry's success: follow-up health assessments of at least a 10% annual sample of Registry participants via telephone interview or selfadministered questionnaire; dissemination of findings, health alerts (if appropriate), and recommendations for referrals for medical screening, evaluation, and possible treatment; and matching with health databases such as hospitalizations, cancer registries, and the National Death Index. These activities would require a minimum of $2 million per year more, beginning in calendar year 2005, for the intended 20-year life of the project. Without this funding, it will not be possible to fully evaluate the potential long-term effects of the WTC disaster. The development of the scientific plan for the Registry has, from its inception, involved the collaboration of scientists from academic institutions both within and outside of New York City, including the City University of New York, Mount Sinai Hospital, Columbia University, the New York Academy of Medicine (NYAM), New York University (NYU), the Bloomberg School of Public Health at Johns Hopkins University, the health departments of New York State and New Jersey, the National Institute for Occupational Safety and Health (NIOSH), the federal Centers for Disease Control and Prevention (CDC) Injury and Environmental Programs, and the Oklahoma State Department of Health. We are very pleased with the response to the Registry during the first 8 weeks of data collection. More than 10,000 people have completed the full telephone interview, and another 5,000 have pre-registered on the Registry website or by calling the toll-free Public awareness and understanding about the availability of the Registry is critical in order to enroll as many people as possible in the different exposure categories. It is important for people to know that the World Trade Center Health Registry has a federal Certificate of Confidentiality, which ensures protection of individual information from release by subpoena or Freedom of Information Act (FOIA) requests. We are grateful to the community organizations, businesses, and city, state, and federal agencies that have participated in identifying and recruiting people to be enrolled in the World Trade Center Health Registry. I also want to thank newspapers and other media groups, including our local TV news organizations that have contributed to increased awareness about the Registry. Potential registrants can pre-register by visiting our website, www.wtcregistry.org or call 1-866-NYC-WTCR (1-866-692-9827) I would like to thank Senator Clinton and her colleagues in the Senate and House The World Trade Center Health Registry does not substitute for or replace the other World Trade Center-related studies and what has and will be learned from those studies about the effects of 9/11. Many of the measures that were included on the baseline Registry survey were derived from exposure and health measures found to be important from prior research conducted by NYAM, Mount Sinai, FDNY, NYU, NYSDOH, and Columbia University, among many others. The World Trade Center Health Registry, nonetheless, is unique in that it will include a high proportion of people in the highly exposed populations, will be more comprehensive (including study of multiple populations), and long-term, and will provide a foundation for conducting future World Trade Center-related evaluations. We have recently published on the World Trade Center Health Registry website |