<DOC> [108th Congress House Hearings] [From the U.S. Government Printing Office via GPO Access] [DOCID: f:98999.wais] ASSESSING SEPTEMBER 11TH HEALTH EFFECTS ======================================================================= HEARING before the SUBCOMMITTEE ON NATIONAL SECURITY, EMERGING THREATS AND INTERNATIONAL RELATIONS of the COMMITTEE ON GOVERNMENT REFORM HOUSE OF REPRESENTATIVES ONE HUNDRED EIGHTH CONGRESS SECOND SESSION __________ SEPTEMBER 8, 2004 __________ Serial No. 108-283 __________ Printed for the use of the Committee on Government Reform Available via the World Wide Web: http://www.gpo.gov/congress/house http://www.house.gov/reform ______ U.S. GOVERNMENT PRINTING OFFICE 98-999 WASHINGTON : 2005 _____________________________________________________________________________ For Sale by the Superintendent of Documents, U.S. Government Printing Office Internet: bookstore.gpo.gov Phone: toll free (866) 512-1800; (202) 512ÿ091800 Fax: (202) 512ÿ092250 Mail: Stop SSOP, Washington, DC 20402ÿ090001 COMMITTEE ON GOVERNMENT REFORM TOM DAVIS, Virginia, Chairman DAN BURTON, Indiana HENRY A. WAXMAN, California CHRISTOPHER SHAYS, Connecticut TOM LANTOS, California ILEANA ROS-LEHTINEN, Florida MAJOR R. OWENS, New York JOHN M. McHUGH, New York EDOLPHUS TOWNS, New York JOHN L. MICA, Florida PAUL E. KANJORSKI, Pennsylvania MARK E. SOUDER, Indiana CAROLYN B. MALONEY, New York STEVEN C. LaTOURETTE, Ohio ELIJAH E. CUMMINGS, Maryland DOUG OSE, California DENNIS J. KUCINICH, Ohio RON LEWIS, Kentucky DANNY K. DAVIS, Illinois TODD RUSSELL PLATTS, Pennsylvania JOHN F. TIERNEY, Massachusetts CHRIS CANNON, Utah WM. LACY CLAY, Missouri ADAM H. PUTNAM, Florida DIANE E. WATSON, California EDWARD L. SCHROCK, Virginia STEPHEN F. LYNCH, Massachusetts JOHN J. DUNCAN, Jr., Tennessee CHRIS VAN HOLLEN, Maryland NATHAN DEAL, Georgia LINDA T. SANCHEZ, California CANDICE S. MILLER, Michigan C.A. ``DUTCH'' RUPPERSBERGER, TIM MURPHY, Pennsylvania Maryland MICHAEL R. TURNER, Ohio ELEANOR HOLMES NORTON, District of JOHN R. CARTER, Texas Columbia MARSHA BLACKBURN, Tennessee JIM COOPER, Tennessee PATRICK J. TIBERI, Ohio BETTY McCOLLUM, Minnesota KATHERINE HARRIS, Florida ------ ------ ------ BERNARD SANDERS, Vermont (Independent) Melissa Wojciak, Staff Director David Marin, Deputy Staff Director/Communications Director Rob Borden, Parliamentarian Teresa Austin, Chief Clerk Phil Barnett, Minority Chief of Staff/Chief Counsel Subcommittee on National Security, Emerging Threats and International Relations CHRISTOPHER SHAYS, Connecticut, Chairman MICHAEL R. TURNER, Ohio DAN BURTON, Indiana DENNIS J. KUCINICH, Ohio STEVEN C. LaTOURETTE, Ohio TOM LANTOS, California RON LEWIS, Kentucky BERNARD SANDERS, Vermont TODD RUSSELL PLATTS, Pennsylvania STEPHEN F. LYNCH, Massachusetts ADAM H. PUTNAM, Florida CAROLYN B. MALONEY, New York EDWARD L. SCHROCK, Virginia LINDA T. SANCHEZ, California JOHN J. DUNCAN, Jr., Tennessee C.A. ``DUTCH'' RUPPERSBERGER, TIM MURPHY, Pennsylvania Maryland KATHERINE HARRIS, Florida JOHN F. TIERNEY, Massachusetts DIANE E. WATSON, California Ex Officio TOM DAVIS, Virginia HENRY A. WAXMAN, California Lawrence J. Halloran, Staff Director and Counsel Kristine McElroy, Professional Staff Member Robert A. Briggs, Clerk Andrew Su, Minority Professional Staff Member C O N T E N T S ---------- Page Hearing held on September 8, 2004................................ 1 Statement of: Howard, John, Director, National Institute for Occupational Safety and Health, HHS, accompanied by Dr. G. David Williamson, Director, Agency for Toxic Substances and Disease Registry, HHS; Dr. Janet Heinrich, Director, Health Care-Public Health Issues, GAO; and Robert E. Robertson, Director, Education, Workforce and Income Security, GAO.... 18 Levin, Dr. Stephen, co-director of the World Trade Center Worker and Volunteer Medical Screening Program; Dr. Michael Lonski, director, training and program development, Life Matters; Dr. James Melius, administrator, New York State Laborers Health and Safety Fund; Stan Mark, esq., program director, Asian American Legal Defense and Education Fund; and Ms. Micki Siegel de Hernandez, health and safety director, Communications Workers of America................ 122 Letters, statements, etc., submitted for the record by: De Hernandez, Micki Siegel, health and safety director, Communications Workers of America, prepared statement of... 164 Heinrich, Dr. Janet, Director, Health Care-Public Health Issues, GAO, prepared statement of......................... 37 Howard, John, Director, National Institute for Occupational Safety and Health, HHS, prepared statement of.............. 23 Kucinich, Hon. Dennis J., a Representative in Congress from the State of Ohio, prepared statement of................... 7 Levin, Dr. Stephen, co-director of the World Trade Center Worker and Volunteer Medical Screening Program, prepared statement of............................................... 125 Lonski, Dr. Michael,director, training and program development, Life Matters, prepared statement of........... 132 Maloney, Hon. Carolyn B., a Representative in Congress from the State of New York: Prepared statement of.................................... 15 Report written by the Sierra Club, ``Pollution and Deception at Ground Zero''............................. 106 Mark, Stan, esq., program director, Asian American Legal Defense and Education Fund, prepared statement of.......... 154 Melius, Dr. James,administrator, New York State Laborers Health and Safety Fund, prepared statement of.............. 143 Robertson, Robert E., Director, Education, Workforce and Income Security, GAO, prepared statement of................ 72 Shays, Hon. Christopher, a Representative in Congress from the State of Connecticut, prepared statement of............ 3 Towns, Hon. Edolphus, a Representative in Congress from the State of New York, prepared statement of................... 179 Turner, Hon. Michael R., a Representative in Congress from the State of Ohio, hearing transcript of October 2003, pages 164 and 165.......................................... 91 ASSESSING SEPTEMBER 11TH HEALTH EFFECTS ---------- WEDNESDAY, SEPTEMBER 8, 2004 House of Representatives, Subcommittee on National Security, Emerging Threats and International Relations, Committee on Government Reform, Washington, DC. The subcommittee met, pursuant to notice, at 12 p.m., in room 2247, Rayburn House Office Building, Hon. Christopher Shays (chairman of the subcommittee) presiding. Present: Representatives Shays, Tierney, Kucinich, Duncan, Maloney, Turner, and Ruppersberger. Also present: Representative Nadler. Staff present: Lawrence Halloran, staff director and counsel; J. Vincent Chase, chief investigator; R. Nicholas Palarino, Ph.D., senior policy analyst; Kristen McElroy, professional staff member; Robert Briggs, clerk; Andrew Su, minority professional staff member; and Jean Gosa, minority assistant clerk. Mr. Shays. A quorum being present, the Subcommittee on National Security, Emerging Threats and International Relations hearing entitled, ``Assessing September 11th Health Effects,'' is called to order. Three years after the cataclysmic attacks on the World Trade Center, shock waves still emanate from Ground Zero. Diverse and delayed health problems continue to emerge in those exposed to the contaminants and psychological stressors unleashed on September 11. An effective response to that attack and future terrorist assaults requires a coordinated, sustained program to monitor, diagnose, research and treat those wounded. Last October, this subcommittee convened in New York City, to discuss the rigor and reach of Federal, State and local efforts to assess the public health impacts of September 11. We heard hopeful descriptions of outreach networks and monitoring protocols, we heard criticisms of slow funding and arbitrary deadlines and we heard concerns about a patchwork of short term solutions to an admittedly long term set of needs Today, we revisit those issues asking what more has been learned about the health effects of September 11 and what yet needs to be done to understand and repair the physical and mental toil of catastrophic terrorism. It is a complex challenge. As we will hear in testimony from the Department of Health and Human Services and the Government Accountability Office, Federal leadership and resources continue to play a critical role in helping public health and disability compensation systems adapt to the demands of an urban battlefield. Make no mistake, the firefighters, the police, the emergency medical personnel, the transit workers, the construction crews and other first responders did not go to work on September 11, they went to war. In the days and weeks that followed, those who labored and lived near Ground Zero, fought to survive against the subtle, prolonged assault on their bodies and minds. Many are still fighting. For them, and for future casualties in this all too modern war, the national public health response has to be vigilant and implacable as the enemy we face. Our second panel of witnesses brings firsthand knowledge of the medical shadow still cat by the falling towers of the World Trade Center. We appreciate their time and insights. We look forward to the testimony of all our witnesses. At this time, the Chair would recognize the gentleman from Ohio, Mr. Kucinich. [The prepared statement of Hon. Christopher Shays follows:] [GRAPHIC] [TIFF OMITTED] T8999.001 [GRAPHIC] [TIFF OMITTED] T8999.002 Mr. Kucinich. Good afternoon and good afternoon to the members of the subcommittee. I want to thank the witnesses here today. I know this is an emotional topic for many of them. It has been 3 years since the horrific loss our Nation suffered on September 11. Yet, while our Nation still grieves and mourns the families, friends and heroes we lost in that tragedy, hundreds of thousands, possibly even millions of New Yorkers carry an even more salient reminder, the lingering physical and mental wounds which persist to this day, but we cannot cure those wounds when we still know little about what caused them. We know intuitively that rescuers, residents, workers and people in the vicinity of the World Trade Center breathed in dust, smoke, asbestos and toxic substances that day and for many days after the attack. We know that the psychological impact of that day would haunt those closest to the scene and mental health care would be needed. Yet, the questions we ask in Congress today are simple but in some cases they are still not answerable 3 years later. Who became ill or may still be ill and doesn't know it, what harmful substances were inhaled and what toxic amounts, are these people receiving treatment, are we working together at all levels, Federal, State and local to provide the care and followup needed? The picture that is slowly developing, and that has been confirmed by the work of GAO to be presented today, is of woefully inadequate funding and neglect in the medical care of those affected. According to GAO, thousands of New York rescue and recovery workers have not yet been screened. Many of them have not received the workers compensation they are due and many of them do not have any medical insurance at all. GAO also notes that hundreds of New York firefighters have been forced to give up their livelihood, been placed on medical leave and had to end their careers due to lingering respiratory illnesses. There is even a new condition affecting hundreds of these firefighters coined the ``World Trade Center Cough'' which is characterized by an acute, persistent cough with severe respiratory problems. Much more needs to be found out and be done. First of all, we need to know how widespread the problem is. There is no longer any monitoring of New York State employees as the program has been discontinued. The World Trade Center Health Registry Program to screen civilians closed its enrollment as of September 1, though only 55,000 out of an estimated 400,000 affected civilians were screened. Rescue and recovery workers have been slow to register and be screened due to lack of treatment options, boundary disputes, interagency disputes and other delays. We need to act and act in unison for the long term. There is no plan to fund long term medical research into September 11 illnesses. We do not know what if any debilitating conditions may require years to appear such as cancer will end up being prevalent. Where the monitoring programs were designed to last 25 years, they are currently only funded for 5. Private and charitable donations are drying up and the current administration has been slow to act. For example, Congress allocated $90 million for the September 11 health screenings last year but this money was only awarded to New York City medical institutions this spring. Of the $175 million appropriated by Congress for the New York State Workers Compensation Board, millions have been spent on processing claims and preparing for future terrorist attacks but almost none has gone to actual reimbursement to the Uninsured Employer Fund, established for worker and volunteer benefits. Moreover, not a single penny has gone directly for treatment of these injuries. If we can raise and dispense over $500 million in financial assistance to 100,000 for the September 11 Victim Compensation Fund, then we can do the same for those still suffering physically and mentally today. No amount of money can alleviate the loss and pain many shared that day but we all need to give a better effort. I want to thank both Chairman Shays and Mrs. Maloney for their persistent oversight efforts to keep the management of and funding of these programs in the spotlight. This cannot and must not be a partisan issue, it should not be a matter of misinformation or red tape. It would be unconscionable to abandon our responsibility to care for each and every one of those victims today and into the future. Thank you, Mr. Chairman. [The prepared statement of Hon. Dennis J. Kucinich follows:] [GRAPHIC] [TIFF OMITTED] T8999.003 [GRAPHIC] [TIFF OMITTED] T8999.004 [GRAPHIC] [TIFF OMITTED] T8999.005 [GRAPHIC] [TIFF OMITTED] T8999.006 [GRAPHIC] [TIFF OMITTED] T8999.007 Mr. Shays. I thank the gentleman. At this time, the Chair would recognize John Duncan from Tennessee. Mr. Duncan. I have no statement, Mr. Chairman. Thank you. Mr. Shays. I thank the gentleman. At this time, the Chair would recognize John Tierney from Massachusetts. Mr. Tierney. Thank you. I am going to waive my remarks so that we can get to the witnesses, but I believe Mrs. Maloney probably has some comments to make. Mr. Shays. Before recognizing Mrs. Maloney, let me thank her for her persistent in encouraging us to look at this issue. We had a hearing in New York City which was very enlightening. I am sure this hearing will be as well. She has been in the forefront of this issue and we do thank her. Mrs. Maloney, you have the floor. Mrs. Maloney. I really want to thank Chairman Shays for holding the second hearing on the health effects of September 11. Back in October, at the end of the first hearing, Congressman Shays promised to continue working on this topic and once again, you have shown that you are a man of your word. We have tabulated how many hearings have taken place and only five have taken place on the after effects of September 11 health effects and two were held by Congressman Shays. So my constituents join me in thanking you for your leadership on this issue. It is a great pleasure for me to welcome many New Yorkers here today and many have been working extremely hard on problems since September 11. I am particularly interested in what the Government Accountability Office has found as a result of their research into the health effects of September 11 as well as the Federal assistance for September 11 workers compensation costs. After reading the prepared testimony of our witnesses, there are still some basic questions that have not been answered. Three years after September 11, it seems that we don't even know how many people are injured or how many people still need medical care, or who in the Federal Government is even responsible for looking into it or taking account of it. I am interested very much in what GAO has to say about this. I am also interested in hearing about what is known with regard to the high levels of injury and illnesses emerging as a result of the attacks. For example, the most comprehensive program to date is one that the New York delegation, led by Senator Clinton, had to fight extremely hard to fund, the national program offering actual medical screening exams coordinated by the Mount Sinai Center for Occupational and Environmental Medicine. Preliminary analysis of the World Trade Center responders, both workers and volunteers in that program, 12,000 of them have shown, well over 50 percent required physical or mental health treatment and/or aid immediately. Even months after the September 11 disaster sometimes the illnesses did not come up. I just met a firefighter 2 weeks ago who showed no illness until he went to another fire and immediately lost his voice and had tremendous problems breathing and can no longer serve as a firefighter. This did not show or come to action until 3 years later and the doctors think it is directly related to September 11. I am also very interested in hearing from Dr. Levin, regarding the current state of the program. The Johns Hopkins December 2001 study which is reported in the GAO report found that among non-firefighters, among those who reported no previous history of lower respiratory symptoms, 34 percent reported developing a cough and 19 percent reported developing wheezing. I am also very interested in hearing about the NIOSH survey of Federal employees working near the World Trade Center that found that 56 percent of respondents reported having a cough. What is astonishing to me is that of the 10,000 Federal workers who responded to the World Trade Center, GAO found that only 412 exams have been completed. When we have seen that up to 90 percent of firefighters have reported health problems immediately after September 11, why have less than 5 percent of the Federal employees who responded been examined for illness? The one program we have that even attempts to track everyone is a phone survey that was supposed to track between 250,000 and 400,00 responders, area workers and residents, but only 55,000 have enrolled according to the report. There are so many challenges with this so-called registry that even some unions who had members working at Ground Zero, are telling their members not to participate due to privacy concerns. All total, we have six different programs that are tracking in some way the health effects of September 11, some are as simple as a phone call or a mailed questionnaire, while others actually involve a doctor and a health exam. However, none include any treatment and no where can I see a Federal coordination among them. I find this outrageous that we repeatedly call the men and women who rushed to Ground Zero heroes and heroines. We describe it as a war zone but if they do not have health coverage or have lost their job because of their health, there is no health coverage available for them. This needs to be changed and it is a very, very important issue. Instead of coordination, it looks like you have a number of different programs going in different directions with different ways of collecting and analyzing data. I don't think this is the way to treat the heroes of September 11. I hope to hear from our witnesses from the administration who in the Federal Government is in charge, who in the Federal Government is worried about these people and who can the victims of September 11 turn to for help. We literally have thousands of rescue workers, area workers, local residents who are sick, yet we have had to fight every step of the way just to set up a program that monitors and documents they are sick. We still do not have treatment. One possible avenue to receive some sort of compensation is the funding provided to the workers compensation. It is absolutely unbelievable to me with so much demonstrated need that GAO finds in its testimony that of the $25 million Congress appropriated for injured volunteers, only $456,000 has been spent and only 31 percent of their claims had been resolved by the State. I hope to hear more about this from our witnesses today including what definition the State gave them for the term resolved. If you were to tell me that we would not provide care for the heroes who so selflessly gave of themselves on September 11, I would not believe you and I do not think the American people would believe you and I do not think the American people would believe you. Yet, we have individuals who are now so sick from their work at Ground Zero that they cannot work, have lost their health care and the Federal Government's response so far has been to turn a cold shoulder. Quite simply, they deserve to be treated better. We give our veterans health care if they get wounded in battle. Why should our first responders and relief workers be treated differently? We lost more people on September 11 than we did on Pearl Harbor. This is the precise reason why Chairman Shays and I have introduced H.R. 4059, the ``Remember 9/11 Health Act.'' This legislation is modeled after a program that gives free Federal health insurance to volunteer forest firefighters who get injured while fighting a forest fire, provides Federal health insurance to individuals who are sick as a direct result of the September 11 disaster. The Senate has passed a bill offered by Senators Voinovich and Clinton which sets up a similar program for all major disasters but the House has yet to act on it. Immediately following the terrorist attacks, the most heart warming thing that happened was how all of America came together and tens of thousands of people came to lower Manhattan to help. I truly believe the most inspiring scene I have ever seen in my life was the bucket brigade of volunteers who went in and worked with the police and fire. Many of them have no health coverage, there is no way to help them now. We know the deep sacrifices of the police, the firefighters, the Port Authority made in terms of first responders who lost their lives. The story is not told as often of the thousands who have suffered from health problems. We always talk about the people who lost their lives, we need to start talking now about the people who are suffering from health problems. We are not, in my opinion, living up to our end of the bargain. We are not caring for the health of our heroes and heroines of September 11. Unless we take the opportunity now to care for them, we jeopardize the future response to disasters. We cannot afford having first responders and volunteers second guess their actions as they respond to a disaster when they rush in to help others. They should at the very least know that the Government will be there to help them with health care coverage. Again, I thank the chairman for his oversight and for his persist work to help the victims of September 11. [The prepared statement of Hon. Carolyn B. Maloney follows:] [GRAPHIC] [TIFF OMITTED] T8999.008 [GRAPHIC] [TIFF OMITTED] T8999.009 [GRAPHIC] [TIFF OMITTED] T8999.010 Mr. Shays. I thank the gentlelady. Let me say, your statement was outstanding. It was longer than we usually have in an opening statement, but frankly, she was using Mr. Tierney's time as well. I thank the gentleman for yielding because it was an outstanding statement. The only reason I am making that preface is that I am going to be asking the witnesses to stay closer to 5 minutes since we are starting later in the day. At this time, I would ask if Mr. Turner has any comment or if I should recognize the witnesses? Mr. Turner. No. Mr. Shays. Let me ask unanimous consent that all members of the subcommittee be permitted to place an opening statement in the record and that the record remain open for 3 days for that purpose. Without objection, so ordered. I ask further unanimous consent that all witnesses be permitted to include their written statement in the record and without objection, so ordered. I think the key point I heard in Mrs. Maloney's statement is how do you get the disparate pieces to fit together? How do we do that? I hope that is answered. I would note our first panel consists of: Dr. John Howard, Director, National Institute for Occupational Safety and Health, HHS, accompanied by Dr. G. David Williamson, Director, Agency for Toxic Substances and Disease Registry, HHS; Dr. Janet Heinrich, Director, Health Care-Public Health Issues, GAO; and Robert E. Robertson, Director, Education, Workforce and Income Security, GAO. Dr. Howard, you have the floor. STATEMENTS OF JOHN HOWARD, DIRECTOR, NATIONAL INSTITUTE FOR OCCUPATIONAL SAFETY AND HEALTH, HHS, ACCOMPANIED BY DR. G. DAVID WILLIAMSON, DIRECTOR, AGENCY FOR TOXIC SUBSTANCES AND DISEASE REGISTRY, HHS; DR. JANET HEINRICH, DIRECTOR, HEALTH CARE-PUBLIC HEALTH ISSUES, GAO; AND ROBERT E. ROBERTSON, DIRECTOR, EDUCATION, WORKFORCE AND INCOME SECURITY, GAO Dr. Howard. My name is John Howard and I am the Director of the National Institute for Occupational Safety and Health which is part of the Centers for Disease Control and Prevention in the Department of Health and Human Services. I am pleased to appear before you today on behalf of CDC and am joined by David Williamson of the Agency for Toxic Substances and Disease Registry. Mr. Shays. Before you proceed, I would note for the record we have Jerry Nadler from Manhattan. I would like to go on with the testimony but without objection, the gentleman is allowed to participate fully as any other member here. If you would like to limit your comment to a minute or so, I would be happy to have your statement. We started literally 25 minutes ago and we haven't heard from the witnesses. Mr. Nadler. I think it is about 2 minutes. Mr. Shays. Mr. Nadler is in the area affected and I welcome his statement. Mr. Nadler. I appreciate your holding this hearing and allowing me to sit on the panel. I appreciate your holding the hearing today regarding the health effects of September 11's terrorist attacks and those who live and work at Ground Zero. As the Member of Congress representing Ground Zero, I have heard from far too many constituents with health problems because of exposure to contaminants in World Trade Center dust. For almost 3 years, I have been criticizing the Environmental Protection Agency's response and that of other Federal agencies to the terrorist attacks on New York City. In March and April 2002, my office published a white paper documenting EPA's misfeasance and malfeasance in an August 2003 EPA Inspector General issued report documenting the EPA gave false assurances to the people of New York regarding the air we were breathing and that the EPA refused to take responsibility to decontaminate indoor spaces such as apartments, offices and schools despite the fact they are federally mandated to do so. Earlier this year, residents, workers and school children filed a class action lawsuit against EPA in an effort to finally get the agency to do its job and do it right as well as to request medical relief. I am very sorry to see the EPA is not present at this hearing today. At the last hearing on this subject back in October, I asked EPA some questions and as far as I know, they have yet to provide any answers. The EPA has also yet to fully answer a Freedom of Information Act request submitted by myself, Representative Owens, along with the support of Democratic Leader Nancy Pelosi and Ranking Members John Dingle, George Miller, Henry Waxman and John Conyers. In order to fully address the issues under consideration today, we hope the committee would receive all the information requested by Congress. I understand that the chairman and Representative Maloney want to focus more on the health registry and the new GAO report on some of the EPA issues. Frankly, we do not need EPA to be here to tell us people are sick as a result of exposure to hazardous substances on September 11. Many of the problems associated with the health registry stem from EPA failures in responding to the terrorist attacks. For example, EPA has never properly tracked the release of hazardous substances and characterized the site to determine who has been exposed, what they were exposed to and the full extent of how far the contamination spread. The EPA instead drew an arbitrary boundary at Canal Street which the health registry followed. Even today's New York Times points this out in a story on this very GAO report. According to the article, ``There are still no definitive answers to what exactly was in the dust, how many people suffered because of their exposure.'' Again, this is because EPA never characterized the site consistent with Federal law. The article goes on to say that ``Although EPA warned people working directly in the rubble to wear protective masks, the agency maintained the dust settled over wider areas including only low levels of asbestos and generally was not harmful, a position the spokeswoman said the agency continues to hold.'' You simply cannot separate the health effects of September 11 from EPA's response at the site. I believe it is very clear what the Federal Government should do to protect the health of all those exposed to hazardous substances as a result of September 11. The EPA should follow its federally mandated procedures to characterize the site and the Federal Government should cover the actual medical treatment of those in need. We must do more than just a screening program. The victims of the terrorist attack are not just statistics. The GAO report under consideration today provides more disturbing evidence to the extent that the health impact following September 11 and the gaps in medical treatment for those affected. According to the report, 90 percent of the firefighters and EMS workers at the site had respiratory ailments. Of the 332 firefighters in the study that reported ``World Trade Center Cough'' only about half have shown any improvement. The GAO report also found that the people living and working in lower Manhattan experienced health effects similar to first responders and that almost 75 percent of respondents living near the site experience respiratory symptoms. The only assistance for these residents is the health registry which does not provide any actual medical treatment. It troubles me that it has been almost 3 years since the attacks and we have made so little progress in helping people recover physically and mentally from the attacks. I am pleased this committee is continuing to look into the health effects of September 11 and I look forward to hearing from the witnesses and learning more about this GAO report so we can move ahead and try to make progress on this issue. The first responders, workers, residents and all those affected by the attacks deserve more from the Federal Government. I stand ready to work with my colleagues in that regard and I again express my appreciation to the chairman, Mr. Shays, and the ranking member, Mrs. Maloney, for following up with this hearing. Mr. Shays. I thank the gentleman and appreciate his statement. Dr. Howard, you are going to start over again. [Witnesses sworn.] Dr. Howard. My testimony this afternoon is going to focus on the most recent CDC efforts to respond to the needs of workers and volunteers regarding the potential health effects of their exposures at the World Trade Center site. Regarding baseline medical screening, in 2002, CDC's National Center for Environmental Health granted $4.8 million to the New York City Fire Department and $2.4 million to the New York State Department of Health to conduct baseline medical evaluations of firefighters and New York State employees who responded to the World Trade Center site in the course of their own jobs. To assess the health status of the emergency services and rescue and recovery personnel who were not otherwise covered by the New York City Fire Department or the New York State Health Department, baseline medical screening programs, CDC awarded $11.8 million to the Mount Sinai School of Medicine, Center for Occupational and Environmental Medicine to establish the World Trade Center Worker and Volunteer Medical Screening Program. In 2003, CDC supplemented this program with an additional $4 million. Mount Sinai established the program by organizing a consortium of occupational health clinics both in New York City and across the Nation to provide medical screening services to workers and volunteers. Baseline screening began in July 2002 and as of August 4, 2004, 11,793 workers and volunteers have been screened. NIOSH scientists, in collaboration with Mount Sinai, analyzed data from a subset of participants, about 10 percent of the sample seen at Mount Sinai between July 2002 and December 2002. These findings will be published this Friday, September 10, in two articles in the CDC Morbidity and Mortality Weekly Report and will describe the physical and mental health effects seen in World Trade Center rescue and recovery workers and volunteers. With regard to long-term medical monitoring, in 2003, Congress directed and provided $90 million for FEMA to work with NIOSH to support long-term followup medical monitoring for World Trade Center rescue and recovery workers and volunteers, including current and retired New York City firefighters. In anticipation of receipt of these funds, NIOSH held a public meeting in New York in May 2003 to gather input regarding the content and the structure of this long-term medical monitoring program. On March 18, 2004, CDC awarded eight grants for a total of approximately $81 million to provide New York City firefighters and other rescue and recovery workers and volunteers with medical monitoring examinations at six clinical centers throughout New York City and over the next 5 years. Importantly, the New York City Fire Department and the Mount Sinai School of Medicine provided funding to establish coordinating data centers to facilitate coordination and communication among the clinical centers and to assure quality control. Followup medical examinations will begin in October 2004 after appropriate hospital review committees have approved the clinical protocols. CDC and ATSDR are also working to identify the health effects of September 11 on the people living, working or attending school in the vicinity of the World Trade Center site. In collaboration with the New York City Department of Health and Mental Hygiene, ATSDR has established a registry to identify and track the long-term health effects of tens of thousands of workers and community members who were the most directly exposed to smoke, dust and debris resulting from the World Trade Center collapse. Launched on September 5, 2003, the World Trade Center Health Registry will interview registrants about their physical and mental health periodically over 20 years or more through the use of comprehensive and confidential health surveys. More than 59,000 have been interviewed and enrolled in the registry to date and they include rescue and recovery workers, office workers, residents, and school children from each of the 50 States. The registry will be maintained over time by the New York City Department of Health and Mental Hygiene and will provide an important picture of the health consequences of the events of September 11 and can be used to identify physical or mental health trends resulting from the exposure. The New York City Department of Health and Mental Hygiene and ATSDR will communicate information to registrants and health care providers as well as posting information updates quarterly on the World Trade Center Health Registry Web site at www.wtcregistry.org. The upcoming October quarterly update will present for the first time health outcome data collected and analyzed via the registry. In summary, CDC and ATSDR are committed to assessing the health effects resulting from September 11, 2001 World Trade Center disaster and to identifying the physical and mental health needs of affected workers, residents and community members. I thank you for your attention. I am pleased to answer any questions you may have. [The prepared statement of Dr. Howard follows:] [GRAPHIC] [TIFF OMITTED] T8999.011 [GRAPHIC] [TIFF OMITTED] T8999.012 [GRAPHIC] [TIFF OMITTED] T8999.013 [GRAPHIC] [TIFF OMITTED] T8999.014 [GRAPHIC] [TIFF OMITTED] T8999.015 [GRAPHIC] [TIFF OMITTED] T8999.016 [GRAPHIC] [TIFF OMITTED] T8999.017 [GRAPHIC] [TIFF OMITTED] T8999.018 [GRAPHIC] [TIFF OMITTED] T8999.019 [GRAPHIC] [TIFF OMITTED] T8999.020 [GRAPHIC] [TIFF OMITTED] T8999.021 [GRAPHIC] [TIFF OMITTED] T8999.022 Mr. Shays. Thank you very much, Dr. Howard. Dr. Heinrich. Dr. Heinrich. I too appreciate the opportunity to be here today as you discuss the health effects of the September 11 terrorist attack on the World Trade Center. Although people across the country were exposed to the emotional trauma of the attack, the residents and workers in the area around the World Trade Center as well as responders, not only experienced the event but also were exposed to a complex mixture of potentially toxic contaminants in the air and on the ground. As noted before, almost 3,000 people were killed in the attack, although a majority of the estimated 16,000-18,000 people who were in the complex that morning were able to evacuate with minor or no injuries. An estimated 40,000 responders were at or in the vicinity of the World Trade Center site or the Staten Island Fresh Kills landfill. Concerns have been raised about the short and long term physical and mental health effects. Under challenging circumstances, various government agencies and private sector organizations established several efforts to understand and monitor the health effects resulting from the attack. I will describe the variety of physical and mental health effects that have been reported across a wide range of people in the aftermath of this attack. Even though most people did not require hospitalization immediately after the attack, thousands of people were treated for injuries including inhalation, musculoskeletal burns and eye injuries. In addition, thousands of responders were treated for injuries during the 10 month clean-up period. Despite the disaster site being considered extremely dangerous, and the more than 3.7 million work hours logged over this period, very few injuries resulted in lost work days. There was a concerted effort by everyone to work safely as well as a reluctance to leave the site. A range of respiratory health effects including a new syndrome called World Trade Center cough and chronic diseases such as asthma were observed among people exposed to the dust and debris of the World Trade Center collapse. Studies present a consistent picture in findings regarding the conditions among those people involved in rescue, recovery and cleanup as well as those who lived and worked in the vicinity. Commonly reported conditions include wheezing, shortness of breath, sinusitis and gastroesophogeal reflux disease. Almost all of the New York City Fire Department firefighters who responded to the attack developed respiratory problems and for some this has meant their careers ended as firefighters. While some responders have reported that symptoms resolved after a few months, many reported pulmonary symptoms 9 months or more after the attack. In the weeks and months that followed, many people reported symptoms associated with post-traumatic stress disorder or PTSD with people living or working near the site reporting a higher rate. People near the site also reported more symptoms associated with depression, stress and anxiety. The six programs established to monitor and understand these health effects vary in terms of which people are eligible to participate, methods for collecting information about the health effects, options for treatment referral and the number of years people will be monitored. These programs are not centrally coordinated but some are now collaborating with each other. Although five of the programs target responder populations, the largest, the World Trade Center Health Registry, is open to people living and working in the vicinity as well as responders. The monitoring programs vary in their methods for identifying those who may require treatment and although none are funded to provide treatment, they provide options for referrals. For example, the New York City Fire Department Program offers a comprehensive medical evaluation and mental health screening. People needing treatment may obtain care from the fire department's Bureau of Health Services. The Mount Sinai Program also provides a comprehensive physical and mental health evaluation. If a person requires followup medical or mental health services and is unable to pay for these, they may be referred to the Mount Sinai Health for Heroes Program which is supported through donations, or to other safety net programs. The Federal Occupational Health and New York State programs also include medical evaluations as well as self-administered health and exposure questionnaires. Workers who require followup are referred to their primary care physicians. Unlike the other monitoring programs, the World Trade Center Health Registry and the Hopkins registry obtain information obtained by questionnaire and does not include a medical evaluation and neither effort is affiliated with treatment. Health effects have been reported but the full impact is unknown. The potential for additional long term effects remains, yet the monitoring programs may not be in operation long enough to capture information about new conditions and are not set up necessarily to coordinate data and findings. We continue to hear the concerns about the lack of resources for adequate treatment of chronic conditions. People really must rely on the existing patchwork of services. Mr. Chairman, I am happy to answer any questions you may have. 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Thank you very much. Mr. Robertson. Mr. Robertson. Good afternoon and thanks for the opportunity to be here. I am going to switch gears a bit and talk about the Federal assistance provided to the State of New York to help the State deal with the workers compensation claims as a result of the terrorist attack. Mr. Shays. Basically, we were talking about health effects and now we want to talk about compensation. There are really two streams of financing we are talking about. One is a stream of money for health needs and another to compensate for lost work. Mr. Robertson. Absolutely. As you are aware, in the aftermath of the September 11 tragedy, the New York State Workers Compensation Board faced an unprecedented challenge in dealing with claims from workers or volunteers who were injured, became ill or died as a result of the terrorist attacks or the recovery efforts that followed. To help the Board meet this challenge, Congress appropriated Federal funds totaling $175 million. These funds were provided through the U.S. Department of Labor for the board in three earmarked portions, $125 million was to be used for processing claims; $25 million was to be used to pay benefits to workers associated with uninsured employers; and last, $25 million was to be used to pay benefits to volunteers. I am going to divide my comments into two general areas. First, I will talk briefly about how much of the Federal funds have been used and what they have been used for and then, I am going to talk about the status of the applications for compensation that the New York Board has received to give you some perspective on the number of claims the State is dealing with and what actions have been taken on them. Starting with the use of claims, we found as of June 30, 2004, the New York State Workers Compensation Board had used about $49 million of the total $175 million appropriated for September 11 workers compensation expenses. If you look at how the funds within each of the three individual earmarked portions of Federal assistance were used, this is what you would find. From the $125 million portion available for processing claims, the Board used about $44 million to reimburse two State entities for benefits they had paid to September 11 victims or their survivors, those entities being the New York State Crime Victims Board and the New York State Insurance Fund. In addition to these reimbursements, the Board used about $4.4 million of the $125 million to prepare for any future attacks. As an aside, I should note that we are continuing to gather information on whether or not the Board's use of funds in this particular earmarked category of Federal assistance is consistent with the Appropriation Act and the grant agreement covering the use of the funds. Concerning the $25 million earmarked for paying benefits for workers associated with uninsured employers, we found the Board had not used any of these funds. However, the Board had used funds from its Uninsured Employer Fund to pay benefits for September 11 workers who worked for uninsured employers. It plans to try to recoup these funds from uninsured employers before drawing upon Federal funds. Finally, the Board has used about $456,000 of the $25 million earmarked for paying benefits to volunteers or their survivors. I would like to move now to the status of September 11 claims. In that respect, the Board has indicated that as of mid-2004, it had received 10,182 claims for workers compensation and an additional 588 claims for volunteers that were related to the September 11 attacks. Ninety percent of the workers compensation claims had been resolved, meaning the Board had resolved all the issues that it could with the information available at the time. Representative Maloney I am afraid I am not going to be able to go too much further than that in defining resolved. Mr. Tierney. May I interrupt you for a second. Did you say 90 or 9? Mr. Robertson. Ninety. The remaining 10 percent of claims were pending in that the Board was waiting for additional information, hearings were yet to be held or the claimants had not pursued their case after they filed initially. Perhaps to head off future questions, I should point out that the Board does not track data on approval or denial rates of claims because, according to Board officials, the Board's core mission is to process individual claims, not their outcomes. While we can't say how many of the worker compensation claims were approved or denied, we can say that 42 percent of the worker compensation claims received were being paid or were in the process of being paid. Turning to the status of the 588 volunteer claims, we see the Board had resolved a lower percentage of these claims in comparison with the worker compensation claims, 31 percent versus 90 percent. The Board indicated that many of the volunteer claims were pending because the claimants were not actively pursuing their clams. Additionally, 85 volunteer claims were awarded cash or medical benefits. Mr. Chairman, that concludes my prepared remarks. I would be happy to answer any questions at the appropriate time. [The prepared statement of Mr. Robertson follows:] [GRAPHIC] [TIFF OMITTED] T8999.056 [GRAPHIC] [TIFF OMITTED] T8999.057 [GRAPHIC] [TIFF OMITTED] T8999.058 [GRAPHIC] [TIFF OMITTED] T8999.059 [GRAPHIC] [TIFF OMITTED] T8999.060 [GRAPHIC] [TIFF OMITTED] T8999.061 [GRAPHIC] [TIFF OMITTED] T8999.062 [GRAPHIC] [TIFF OMITTED] T8999.063 [GRAPHIC] [TIFF OMITTED] T8999.064 [GRAPHIC] [TIFF OMITTED] T8999.065 [GRAPHIC] [TIFF OMITTED] T8999.066 [GRAPHIC] [TIFF OMITTED] T8999.067 [GRAPHIC] [TIFF OMITTED] T8999.068 [GRAPHIC] [TIFF OMITTED] T8999.069 [GRAPHIC] [TIFF OMITTED] T8999.070 [GRAPHIC] [TIFF OMITTED] T8999.071 [GRAPHIC] [TIFF OMITTED] T8999.072 Mr. Shays. Thank you very much, all of you for your concise and helpful testimony. We will start by turning to Mr. Tierney to ask the first set of questions. Mr. Tierney. Thank you. Mr. Robertson, I want to pick up where you left off. You used the word resolved the claims, so can we explore that a bit and have you define that for us what exactly you mean by ``resolved claim?'' Mr. Robertson. I don't think you will like the explanation because, as I said earlier, I have given you all I have in terms of the definition which is basically the Board's definition. That is they have in essence acted on any piece of information they had and made any decision they could based on the information they had at that point in time. According to the Board, claims can go back and forth between resolved and pending depending on the information that is brought to bear. Mr. Tierney. So they might not get resolved if they think a person has abandoned or neglected their claim? Mr. Robertson. That would go in the pending category. Mr. Tierney. What items go into the resolved category, what is the range of decisions that end up being called resolved? Mr. Robertson. It would probably be easier to define pending and then anything else. Mr. Shays. Mr. Tierney is going to have more than 5 minutes because we do need to understand this issue and you do not need to keep saying you don't think we are going to like the answer. You don't need to presume that. What you are doing is reporting on not what you are doing but on what someone else is doing. If you could help Mr. Tierney understand this point by point and the whole subcommittee, it would be helpful. Mr. Tierney. We are not holding you responsible. Mr. Robertson. Let me say a couple things. Again, I think it is probably easiest to define pending and basically say anything else that is not defined as pending would be in the resolved category. Mr. Tierney. That is only slightly helpful because it doesn't tell me at all any characteristics of the other things. If it is pending, it hasn't been acted upon, it is in resolved but it doesn't necessarily mean it has been acted upon favorably or any other way. Mr. Robertson. Absolutely, and as I said, the cases can go between pending and resolved based on the information. Mr. Tierney. And they have no other breakdown of this at all? Mr. Robertson. No. It was very difficult for us to give a perspective on how the September 11 claims were treated because we didn't have information on typically what is the rate of approval and the rate of denial for the claims the Board normally processes and how the September 11 claims compare to that. We didn't have that data so that was one of the reasons it was very difficult for us to provide perspective on what those status numbers mean. I would like to point out another factor that also limits or inhibits our ability to provide the perspective I think everyone wants in terms of the September 11 claims in comparison with the other compensation worker claims. The fact of the matter is that even if we had information on rates of denial and rates of approval, it could be that the very basic characteristics of the September 11 claims were so different from the typical worker compensation claim that you would have to be careful in making that comparison. This is a very long way of saying we have been frustrated in trying to provide perspectives on what was happening with these September 11 cases and the status of the cases. Mr. Tierney. Any other ideas on how we are going to try to recapture some of that ground? Mr. Robertson. We are getting data and we do present some of the data in the prepared statement on specific types of claims--the volunteer claims--because those use specific Federal funds and the Board is following those in terms of providing information on how many have been awarded and how many weren't. In that respect we are getting more information. Mr. Tierney. Dr. Heinrich, with respect to those workers who were injured and have not been able to return to their former employment, what did you say in your statement about what is being done for those individuals? Is anything being done and how are we doing? Dr. Heinrich. First of all, we don't have good numbers on all the people who were injured. I think the best of our information is for people who had musculeskeletal injuries or sprains. They were resolved fairly soon after the attack. The major issues really seem to surround people who have developed chronic conditions as opposed to injuries. Mr. Tierney. Many of those people have not been able to return to work. I am interested in knowing what we are doing for that population of people. Dr. Howard. The only thing I would say is I think we probably need to hear from the Mount Sinai people who are actually seeing these thousands of workers and former workers to give some reference point for that. I don't have any information from the CDC perspective. I would imagine if they are covered by workers compensation, there are rehabilitation provisions in the State Workers Compensation Act. Mr. Tierney. They would be back in the resolved category? Mr. Robertson. Yes. Mr. Tierney. Thank you, Mr. Chairman. Thank you for your courtesy. Mr. Shays. At this time, we will turn to Mr. Turner. Mr. Turner. I want to thank you again for your efforts to focus on this issue. This is a very important issue as we all know not only for the heroes of September 11 but also for the victims of September 11 which through this process will be identified. One of the issues that was clear when we had our hearing in October on this issue was the issue of misconceptions of how the agencies relate to one another and responsibilities as to how agencies relate to one another. I would like to ask that the hearing transcript of October 2003, pages 164 and 165 be admitted to this record. Mr. Shays. Without objection. [The information referred to follows:] [GRAPHIC] [TIFF OMITTED] T8999.073 Mr. Turner. It goes to refute the misconception that Federal EPA was mandated to undertake decontamination at or surrounding the World Trade Center. There is pretty exhaustive response in there by the EPA as to what their authorization responsibility is and their mandated responsibilities. Getting to the issue of the different agencies and how they interact, one thing that was clear in that hearing in October is there appeared to be a lack of coordination both in registries and information being gathered in the processing of claims and assistance being provided. I am hopeful that has improved since October and I would like your thoughts as to how the various interests and parties are working together to ensure we get a clear understanding of what resources will be needed, what resources are being applied, what information and data is being collected and how it is being handled and meshed together so we can have a clear picture of what needs to be done. Dr. Howard. Dr. Howard. I do have a few thoughts on this issue. The short answer is I think we are better coordinated than we were but I think the long answer has to start with September 12, 2001, when response had to be immediate and oftentimes after a disaster, without existing programs in place, you make the best opportunities work for you. I think that coordination wasn't the first item in the agenda in late 2001 and 2002. I think that is true in most disasters and I think I would like to make a relationship between that early response that was rapid and some of the money that came out of CDC very early went to States and grant systems that were already in place. That is how the New York Department of Health got money. As 2002 and 2003 went on, the need for increased coordination was clear. When NIOSH received the $90 million from FEMA to do long term monitoring, one of the things we insisted on was coordination amongst the various medical monitoring programs, the Fire Department and Mount Sinai. We set aside money within that $90 million for coordination between those two entities and between the Government agencies. I think we have grown in our understanding of coordination. From our department's viewpoint, the Department of Health and Human Services, our Office of the Secretary, the Office of Public Health Preparedness is the coordinator for our program, but we are not centralized in the traditional sense. All the programs are not one program because they attempt to deal with different populations situated in different ways and that have different needs. I think the take home point I would like to make with regard to the coordination and centralization issue is that the biggest lesson I think we have learned from the establishment of these programs has been that emergency preparedness needs to include right now and in the future an aspect of medical preparedness also, not only the immediate need of taking care of people who are acutely injured and have acute illnesses, but also people who will develop chronic health effects. I think that the Mount Sinai and other programs CDC has and HHS have funded have taught a very valuable lesson about the value of including medical preparedness for chronic conditions that will develop from disaster responses. I would say my thoughts are that coordination has developed over time, we are much better coordinated now, 3 years later, than we were on September 12, 2001. Dr. Heinrich. I would like to add that there are institutions and organizations in place now as a result of our experience with September 11 that weren't there before. The States and certainly the city of New York have received money so that they are better prepared for major public health emergencies and bioterrorism. You have at HHS now the Office of Public Health Emergency Preparedness so that they really do have a mandated coordination role along with the Department of Homeland Security. That is not to say that everything is rosy but at least you have people that are accountable for that coordination effort. Certainly in New York City we have seen that they practiced on a number of occasions coordination because of a public health emergency event, the anthrax incidents, for example. Mr. Robertson. My perspective is obviously a lot more narrow than my two colleagues. One of the points I wanted to make today in regard to the Federal assistance and how well it was used or well it wasn't used, is it seems to me now would be a terrific time, just talking about the narrow issue of Federal assistance, a terrific time for all of the players at the State and Federal level to get together and basically identify what worked and what didn't work. This lessons learned type of evaluation, I think, is particularly important now in the world we live in because there is no guarantee that we are not going to experience another tragedy. I would encourage kind of a lessons learned analysis of how we use the Federal assistance for the worker compensation funds. Mr. Shays. I think there is almost a guarantee that there will be future events. Some we will be able to detect and prevent and some we probably won't be able to, maybe not as horrific, God help us, but I go under the assumption that one of the reasons we are having this hearing is to make sure that we learn from the New York experience, in addition to helping our fellow countrymen. At this time, the Chair would recognize Mrs. Maloney for 10 minutes. Mrs. Maloney. I thank all the panelists. I would like to say that your report, Dr. Heinrich, is probably the most thorough evaluation I have seen so far on the Federal response to September 11 health effects. Reading your testimony, it looks to me like 3 years after September 11, we still have no idea of the number of people who are ill or injured from the attacks. We still don't have that. From reading your report, it looks to me that no one from the Federal Government or anywhere can give us a number as to how many people are ill because of September 11. It appears that no one is in charge. Is this a fair assessment? Dr. Heinrich. The no one in charge, I would agree with although as we have heard, there are new efforts to try to coordinate the programs that are doing the monitoring. I suppose we could say because most of these programs that are doing the monitoring come from CDC that one might expect that CDC would take a role in being accountable for all those programs. The fact of the matter is, you are correct. We don't know the exact number of people injured as a result of September 11 or the number of people who now have chronic conditions. Mrs. Maloney. Dr. Howard, can you tell me who in the Federal Government is in charge of coordinating the health effects of September 11? Dr. Howard. As I said, I can only speak for the Department of Health and Human Services. Certainly as Dr. Heinrich has said, our Office of the Secretary, the Office of Public Health Preparedness specifically, is our coordinator for all of our programs. As our Secretary is fond of saying, we are one department. So all of the programs that emanate from the Department of Health and Human Services are coordinated. As I said also, that doesn't mean that each program looks like the other program. There are at least five programs that I know of funded by the Department to provide medical monitoring as well as the registry that ATSDR and the New York City Health Department administer. So it doesn't mean they are all centralized but they are coordinated. I would also like to point out that there are coordinations that are occurring at the level that I think are also important, in addition to the Federal bureaucratic level. That is at the level of the users of the service, the registrants in the registry, the labor representatives of the workers, and the medical providers in the community. I think there is a lattice work of coordination going on there that I would say did not exist a couple of years ago but has developed over the last couple years. Mrs. Maloney. You are saying that the person in charge is Tommy Thompson of Health and Human Services? Dr. Howard. As our Secretary would say and as my director would say, Dr. Gerberding, the buck stops with all of us in terms of the managers of all of our programs. Mrs. Maloney. One person has to be in charge. Dr. Howard. As I said, the Office of the Secretary and the Office of Public Health Preparedness is the responsible entity within HHS. Mrs. Maloney. Can you give me the name of who is in charge? Dr. Howard. The office is run by the Assistant Secretary, Stewart Simonson. Mrs. Maloney. Does he know or anyone in NIOSH or the Federal Government how many people are still suffering or still sick as a direct result of September 11? Dr. Howard. I am not sure that anybody could give you an exact figure. The denominator of people exposed is very rough with a large margin of error. Mrs. Maloney. We have six different areas doing various monitoring and oversight according to Dr. Heinrich's report from the GAO. Someone should be pulling all of this together. At the very least we should know how many people are sick as documented in these six different programs. Dr. Howard. I don't think it is hard to come up with an estimate based on the large margin error with the denominator of people exposed and the number of people that have entered the registry. We will be able to get an idea from the registry of a prevalence number of people exposed. My colleague who runs the registry may be able to respond a little to that. Mrs. Maloney. Yet we know in the registry, only 55,000 people have gone into the registry, so that is not in a sense an accurate number. Dr. Howard, since you said your agency is in charge. I want to get a number of how many people are sick and when are you going to get me that information? I think that is a legitimate question and something that should have been part of the GAO report but because we were not coordinated, they were not able to come up with the number. I think 3 years after September 11, we should have a better assessment of people's health conditions that we can talk about. Because I represent New York, a firefighter just came to my office 3 weeks ago and when he went into a fire, he thought he was totally well and he lost his ability to speak. The doctors at the New York Fire Department are saying it is related to September 11. He can no longer operate as a firefighter. It is an illness that came out 3 years later that he didn't have at first. We have to have that some place and you say your unit is going to have that and coordinate it. I want to know how many people are still sick based on the six registries we have going and when can he get us that information. I think that is a legitimate request. Dr. Howard. I think we will have on September 10 the first peer reviewed report in CDC's MMWR which will have a subset, about 10 percent, of the participants that have been screened at Mount Sinai. We will have a prevalence figure, an incidence figure, of respiratory symptoms, muscle skeletal symptoms and others. Mrs. Maloney. Dr. Howard, that is just one. I am glad you will have that on September 10. I congratulate you and everyone who has worked on it but that is just one of the six different areas that GAO outlined that are pulling together this information. I am delighted we will have Mount Sinai's report on September 10. What about the other five programs? When are we going to have their report combined together in one getting back to my initial question, who is in charge? Someone should be in charge of having this information in the Government and if that is the only thing that comes out of this hearing, I would be very happy to know there is one central point that Members of Congress can go to and the public and health experts to get this information. Dr. Williamson. That is a very good question. I can respond with regards to the registry. One of the reasons the registry was established was because when you have these other five programs, there is one registry and five other programs, sets of health studies. Those sets of health studies are looking at very specific subpopulations of people who were exposed during and immediately after, a few months after the disaster. We were hoping with the registry to be able to capture a cross section of everyone who was exposed not necessarily just subpopulations. We think the registry is going to give us the best idea of how many people actually were injured and/or ill resulting from the collapse of the World Trade Center Towers. We are not going to have an exact number because we only have so many people who have registered and will be included in the registry but that is a much broader and more comprehensive snapshot than any of the other five sets of programs you are talking about because it includes all of the people who were potentially and were exposed during and immediately after the collapse of the World Trade Center Towers. Mrs. Maloney. But it is just one of the six different programs and when you look at the other five programs, they have more people than the 55,000 in the registry. For whatever reason, the registry is not capturing the people. I think we have a challenge here and I think it is an important challenge. I think many health experts have talked about the unique disaster of pulverized glass, cement, toxins, antitoxins, all these chemicals. What is that going to mean in terms of long term health effects for cancer and so forth and how can we be assured that the monitoring will continue for 20 years and maybe longer to really track this? Dr. Williamson. I am not sure we can assure that we would be able to track it for over 20 years. On an annual basis, we are looking for being able to continue the registry as the registry was established a couple of years ago and hopefully we will receive additional funding in the fiscal year 2005 budget to increase our registry efforts but we can't explain whether or not we are going to be able to have the registry for more than 20 years. We would like to be able to track as best we can not only the short term but the long term effects of the disaster. For as long as we continue collecting the data, analyzing it and find things in the data that indicate that we need to study more subpopulations, we are hoping to continue the registry. Dr. Howard. That study over 5 years will provide very powerful indicators of the future need for funding. Mr. Shays. Before recognizing Mr. Nadler, I want to make a point that haunts me a bit. I had some doctors who treat cancer patients, this was 10 years ago, and they came because they wanted me to get me to focus more on smoking. They said that 20 years after World War I, cancer rates went up almost perpendicular. The identical period of time, they leveled off and they just soared. That is unsettling because for a number of years, people thought they were safe and yet they weren't. That is why the monitoring issue is something I want to focus on long term. At this time, the Chair would recognize Mr. Nadler for 10 minutes. Mr. Nadler. Let me state for the record, regarding a comment made by the gentleman from Ohio a few minutes ago, at the last hearing when EPA was asked they stated they were not responsible, it would not be lead agency for cleaning up the area of having no responsibility for decontaminating buildings. EPA did say that in answer to a question of Mr. Turner's. I then asked them in light of Presidential Defense Directive 62 issued in 1998 which specifically makes EPA the lead agency for dealing with the consequences of hazardous material discharges as a result of an enemy attack or any kind such as that, did they stand by their testimony given under oath? They then said they were not lawyers and couldn't say yes or no to that question and would get back to us, which they have not done as of yet. I can't let that stand. The EPA ducked that question and clearly in my opinion under PDD 62 and the CERCLA law, is responsible, is the lead agency and is still denying that responsibility. That bodes ill for the future because no one is taking the lead responsibility at this point in the Federal Government for indoor cleanup or decontamination in case of a future attack or catastrophe. No one has taken it in New York at all. The city hasn't taken it, the State hasn't taken it, the Federal Government hasn't taken it. It has left residents to their own devices which is why I believe residents are slowly being poisoned today by toxic environments and improperly and inadequately cleaned up homes, schools, fire houses and offices to this day and for the next 20 years. Mr. Shays. Could the gentleman yield for a second? We will go back and look at any part of the testimony and commitments made to respond because the agencies have not gotten back to us on certain issues and I need to make sure they have done it on all. Mr. Nadler. It's in the transcript a few pages after page 164. Mr. Shays. We will do that and I want to make sure we don't have it and have not been aware we have it. We will make sure that is followed up. Mr. Nadler. Dr. Howard, following up Mrs. Maloney's question on how many people were affected, we have five programs basically for firefighters, police officers and different categories of first responders and then for residents and workers in the area, you have the registry. The registry, however, was limited by fiat to people who lived and worked south of Canal Street. What justification is there in terms of scientific validity of any information we get out of the registry for an arbitrary line at Canal Street? Dr. Howard. I will let Dr. Williamson handle that one. Dr. Williamson. The New York City Department of Health and Mental Hygiene as well as ATSDR put together a scientific advisory committee of a group of illustrious scientists from Columbia and Mount Sinai and Johns Hopkins as well as other institutions. Those people in conjunction with ATSDR and New York City Department of Health and Mental Hygiene decided. Mr. Nadler. I don't care who decided, what was that based on other than arbitrary ruling? Was there a Star Trek type force field or a 3,000 foot high wall at Canal Street that prevented the toxins from going north of Canal Street or for that matter across the East River into Brooklyn? Do we have any scientific basis for believing that a registry with that geographic boundary has any validity at all? Dr. Williamson. The CDC, ATSDR and New York City, along with the Scientific Advisory Committee took a look at the information provided by different groups including EPA, NASA and ATSDR. Mr. Nadler. What is that information? I don't care who said it. I want to know what basis do we have for assuming that the south side of Canal Street might have been polluted but the north side of Canal Street was crystal pure and clear? Dr. Williamson. The registry was set up not to say that some groups were exposed and others were not. It was set up to say what groups were most exposed. Mr. Nadler. What basis do we have to assume that Canal Street had any scientific validity whatsoever? I am not interested in who said it did. What basis do we have that there was something magic about Canal Street that said people who lived and worked south of it were at an appreciably larger risk and had to be looked at than people who lived across the street or a block north of it? I know the answer to this question I am going to ask is no but I would like you to answer it. Did anybody do any scientific assessment of where the toxins went? Did anybody do sampling to say they went here and therefore this is where we will do the registry and not there? Dr. Williamson. There were different outdoor and indoor air samples available and that information was taken into consideration. Mr. Nadler. Did anybody do what the Inspector General of the EPA said should have been done which is to say, taking samples in a concentric circle going outward from the World Trade Center so you could say the problem is three blocks in this direction and 3 miles in that direction or two blocks? Do we have any scientific basis for assuming that the geographic limitation of the registry has any scientific validity at all, yes or no. Dr. Williamson. I am not aware of that kind of detailed analysis. Mr. Nadler. Are you aware of any scientific analysis other than an arbitrary, bureaucratic line? Dr. Williamson. Only if taking into consideration the data we had at hand from the different agencies. Mr. Nadler. The data that was in-hand was incomplete and showed lots of pollution north of Canal Street, in Brooklyn and all over the place. What was the basis for drawing a line for this registry at Canal Street or for that matter, the East River? Dr. Williamson. I am not aware of specifically how the lines were drawn. Mr. Nadler. Can you get back to us the information as to the scientific basis for choosing Canal Street, assuming there is a difference between north of Canal Street and south of Canal Street and that there is a difference between lower Manhattan and say Brooklyn Heights because all the satellite photos showed that plume going all across Brooklyn. We know that ash was sprawling across Brooklyn into Borough Park and Brooklyn Heights and Coney Island and yet nobody in those neighborhoods or north of Canal Street is allowed to be in this registry which I maintain means the registry is incomplete. Chinatown was also cutoff. What was the basis? We know there was lots of pollution there. What was the basis for saying nothing north of Canal, nothing in Chinatown, nothing across the East River? I am not interested in what bureaucratic agency said that's a good idea, I want to know what is the scientific basis for drawing such a line? Dr. Williamson. Again, the point was not to exclude anyone. We have to collect as much information in as comprehensive a way as we can. Mr. Nadler. With all due respect, that is rhetoric. Why was it drawn at Canal Street and not at say Chambers Street or in a 5 mile radius or a 2 mile radius around the World Trade Center? What basis was there for drawing the line that was drawn? What was the scientific basis for drawing that line? I don't believe there was any. I'd like to hear what the scientific basis for drawing that line is because if there wasn't a scientific basis, which I believe to be the case, then the registry is not including as many people as possible, it may be excluding 80 percent for all we know of the people who ought to be in it. Dr. Williamson. It is a good question and I will try to get back to you on that but I must tell you that the registry was set up with some very specific things in mind in order to try to get as much information as possible given the resources and the time to reach so that we could answer the questions you are asking with the information we have. Mr. Nadler. It is very nice, these conclusory remarks but why Canal Street and not Chambers Street, the scientific reason, not Howson Street but 14th Street, why not Chinatown, why not look into Brooklyn, not an arbitrary, bureaucratic answer but a scientific basis, what is different scientifically, what evidence do we have that there is a scientific difference between south of Canal and north of Canal. Mr. Shays. Will the gentleman yield? I would like to resolve this now rather than later in part because I am wondering if we did get information that we had requested in the past. I don't know if I would describe your analysis as bureaucratic. What I am hearing you basically say in the end, and I would like to pursue this and answer it one way or the other, it seems to me it was not based on any scientific knowledge. You made assumptions in order to begin the registry and to begin to start to get information. Are you aware that any of this was based on any scientific study that was done? I am not aware of any. Dr. Williamson. I am not aware that it was based on any single scientific study. It was based on information that we got from EPA, that we got from NASA and with the constraints we had in order to try to get the registry up and running. With estimates of the numbers of people we thought we were going to be able to identify with the resources we had, we said this would be a good first cut at getting as much information on the people, we felt, not based on a particular scientific study but all of the information. Mr. Shays. Let me give the floor back to you, Mr. Nadler, and allow you to pursue a little more but let me make this point. I think the answer to the question is no and I don't think we need to wait for you to get back to us to say no. The answer is, it is not based on any scientific information. You all tried to do the best you could without scientific information, it strikes me. That is what I am hearing you say. I do think, Dr. Heinrich, you could maybe add some insight here and you have the floor, Mr. Nadler. Mr. Nadler. Let me just say, I don't want to take anything away from officials who had to act in haste at the time. What bothers me is that I do believe, and I have been involved in this in some depth, that there is no valid reasons for those arbitrary lines and maybe it was a good first cut, as you said, but may be those lines should be expanded now. In other words, if this registry is going to have validity and the registry is also funded for 5 years. It should obviously be funded for the lifetime of all the people involved in it and it should also be expanded from the registry to provide health treatments for those who need we find need it. Beyond that, the geographic boundaries, if we are to have any scientific validity, now that we have time, it is 3 years, there ought to be what the Inspector General said a year ago now or the white paper in my office said 2\1/2\ years ago, there ought to be detailed samplings, indoor and outdoor and concentric circles going out from the World Trade Center so we can see where the problem was, so we can have a better scientific estimate of where the people should be sampled, of where the registry should be expanded. I will guarantee you it is a lot wider than Canal Street and what might have been a first bureaucratic cut based on somebody's estimate at the time but not based on valid science, which could not be based on valid science, because no one ever did all that testing. In all the hearings we have held and everyone has held, we know no one ever did the testing that needed to be done. The Inspector General said that and no one has done it since then. It ought to be done now and the registry certainly ought to be expanded not only in terms of time so that we can see the effects beyond 5 years, if there are 20 year effects, which there will probably will be, but also geographically. Mr. Shays. I thank the gentleman. If you want to make a comment, then I want to take the floor for my questioning. Dr. Williamson. I would like to say again that is something that we hope the registry will allow us to do, to identify the areas and the subpopulations which need to continue to be looked at and to expand depending on the information that we get. The subpopulations right now that the other five studies are not looking at quite so much but the registry has information on, such as the residents and the school children, that is one thing the registry is going to allow us to do. As far as expanding the registry boundaries, what we did was go through a very scientifically validated protocol from peer reviewers, so we got that approved and if we were to change the eligibility criteria or expand the eligibility criteria geographically, we would go back through a very scientific process of putting together a peer review. Mr. Nadler. Excuse me. With all due respect, there was no scientific process. There may have been people who decided to OK what somebody decided but there was no valid scientific process and if there was, we have asked you to submit that to us which we have not yet seen. Dr. Williamson. I am talking about justification for the protocols. Mr. Shays. Dr. Heinrich, do you have any contribution to the dialog that has taken place in the last 10 minutes? Dr. Heinrich. I do think that in the scientific literature, we have seen some summaries now of the sampling of the air and there is more information now than there was when it was set up about what kinds of contaminants were in different geographic areas. I think what you have heard is that as they were establishing the registry looking at the resources they had at hand, they really had to make some assumptions about who would be the most likely to have the largest exposure. At least that is what I have gleaned from the scientific reviews that we have done. One issue I would like to bring up is that to the best of our knowledge, the registry doesn't necessarily have funds to carry it forward for all 5 years since much of the funding has already been expended. Dr. Williamson. The registry only received initial startup funds. Mr. Nadler. If I could just ask Dr. Heinrich, what you just said was very interesting. You said they made a decision as to where to focus based on the available resources most effectively which may very well be the case but that is backward. That is saying we have a certain amount of resources and therefore we can only do up to Canal Street. Mr. Shays. Is that what you are saying because that is what it sounded like to me. Dr. Heinrich. There is no scientific justification for the specific boundaries that we were able to find. Mr. Shays. I think we have to acknowledge that is the fact. I think we also have to acknowledge, given the resources available, there were intuitive decisions made but nothing scientific and I think we can agree on that. I appreciate my colleague's line of questioning. I wrestle with this. Having been in the Twin Towers, thinking how tall they were, thinking of what was in them, the marble, the construction material, it was pulverized, the pressure and so on just pulverized all of that and it was smothering until well past December or at least to December. So intuitively, I make an assumption that this wasn't good stuff and we would expect there would be some scientific explanation as to what was there and what wasn't. We know it wasn't done right away. We know workers like the firemen who raced up the floors, the workers that raced to the sight and we know they didn't wear masks, we know they didn't wear protective gear and we also know like some of the Gulf war syndromes, that they are sick. There are a lot of people who are sick. What I am seeing is a Federal, State and local effort to deal with this and when Mrs. Maloney is asking the other very pertinent question besides the question asked by Mr. Nadler, she was basically saying who is in charge but you can tell me who is in charge at the Federal level, who is in charge at the State level and you can tell me who is in charge at the local level but the problem is we have them all mixed together. We have the New York Fire Department, they have their system. We have the emergency medical and certain rescue in Mount Sinai. We have other Ground Zero responders at the registry. We have New York State workers who are being examined as separate. We have the people living and working in the area, they are under the registry. We have the Federal workers being examined separately. I think what I would ask you to do is tell me how do we sort this out. I am not yet aware. My theory is this. If the witnesses don't tell us, we are ignorant of what needs to be done unless we find out from other sources. If they tell us what we need to do and we don't do it, the blame rests on our shoulders but right now, you are letting us off the hook. We need to know what needs to happen to bring some sense to this. Who wants to start me out in this process? Dr. Howard. I will be the brave one. I would like to suggest that the description you just gave of the very difficult nature of characterizing the exposures that existed for firefighters, other workers, volunteers, clean-up workers, rescue and recovery workers, from this mix of physical and chemical agents and combustion products represents what we in science call a mixed exposure which really strains the boundaries of our existing science in terms of understanding what the health effects are from mixed exposures. I think often science proceeds too slowly for all of us but there is value in the fact that there are multiple different programs looking at this same issue, in different populations, granted, but they all will, over the next 6 to 12 months, be producing peer reviewed science articles as the one I referred to coming out this Friday in CDC's MMWR, that will help us answer the question that Mrs. Maloney raised and everybody is interested in: what is the prevalence of health effects on a chronic nature that comes from this population, albeit a sample of this population because we don't have the whole denominator. I think what we need to concentrate on is making sure the existing programs we have are, and I agree with the committee's questions, coordinated well, they are speaking to each other, the people they are representing, the participants, the registrants and their representatives are fully involved in all the advisory committees for those programs and those advisory committees are coordinated. Mr. Shays. The problem is committees create camels when they are trying to create a horse. Is there a recommendation from any of you of who should try to coordinate all this? Should it be New York State, the Federal Government? The Federal Government is providing most of the money it seems to me. Is that correct? Dr. Howard. Through FEMA. FEMA provides most of the money; it comes to HHS, CDC, NIOSH, ATSDR and it goes out to the individuals. Mr. Robertson. The worker comp program is a State program. There was $125 million for processing the claims and then two pots of $25 million each, one for workers associated with uninsured employers and the other for volunteers. Mr. Shays. I really believe there has to be one person in charge, maybe somebody who takes charge to coordinate and an agreement on the part of State and local governments. If it is the Federal Government, let them do it or the Federal Government needs to agree that it is the State, but one person basically looking to coordinate all this activity. Tell me what steps should be taken to ensure that money and programs will be in place to look at the long term effects. This is running out, correct? So what do we do? Dr. Howard. As I said previously, I think that the findings that will be coming from the programs already funded, from the registry, from the Mount Sinai program which will be funded for 5 years now, that data will speak louder than any of us at this table and I think it will give us a direction as to where we need to go in terms of continuing monitoring as well as research. Mr. Shays. When is it going to give us that direction? Dr. Howard. I would say very shortly. I would say since Mount Sinai has nearly 12,000 of its cohort participating, monitoring results--and Dr. Levin will speak to this on the second panel--will come out very shortly. As I say, the first report will come out this Friday. I think the report will be of concern. Mr. Shays. But in the case of cancers? Dr. Howard. That is a more long term thing and that is why I said the findings that come out that we have will inform us as we go through these periods of time. Mr. Shays. We have one witness who has made some very helpful recommendations. I would like recommendations from all of you. What steps can we take to improve the process, how can we make sure this is better coordinated, and so on. Dr. Williamson. I would certainly talk for the registry. One of the things we have done since September 11 is try to put into place a rapid response registry program so that we will be able to more quickly respond to emergencies. It is important to be able to identify the expertise that would be available on an as needed basis as quickly as possible to be brought to bear on the impacted emergency situation as quickly as possible. We are in the process at CDC and ATSDR of putting together this rapid response registry program. This is one of the recommendations we have seen as a result of September 11 that we are trying to implement, we are hoping to be able to do things on a much quicker basis. Dr. Heinrich. Most of these programs are funded, I think all of them are funded, through different organizations, entities within CDC, and one approach might be that we ask CDC to be more proactive in its role for coordinating these programs. Certainly one effort it has already started it sounds like is having centers that have responsibility for coordinating the data because at a minimum, you would want somehow to be able to look at these findings across these various programs. It sounds like maybe you can do it for a couple now but not for all. It is the Federal Government that has the money but you have to form a partnership with the people on the ground and I think that is what they are trying to do but the mechanism for that is the one they are using which is the cooperative grant program. Mr. Shays. If there is ever a justification for a committee to write a report on recommendations, this is one of them because if everybody is doing their job to the best of their ability and in many cases, quite well, but they are all part of what I view as not a coordinated effort. Mr. Robertson, what happens when the $25 million in Federal funds designated for volunteers and workers comp has disappeared? Mr. Robertson. That is a great question and I think it illustrates some of the points you have tried to make. Basically, when those funds are used up, the benefits for those volunteers are used up. We probably should do more thinking in terms of trying to do some analysis now to figure out if and when those funds will run out and what we will do under those circumstances. Mr. Shays. We need to get to the next panel. Is there anything you felt needed to be a part of the record that is not part of the record? Mrs. Maloney. I have one brief question. In your testimony, Dr. Howard, you talked about in collaboration ``with informal network of occupational specialists, CDC helped facilitate the production of a guidance document to assist community-based physicians in the medical evaluation of patients exposed to the disaster.'' I want to compliment CDC on their response to SARS and sending out medical directives but I have not found one doctor who got this communication. I have had many cases reported to us where people went to doctors and were told they had asthma and then found they really had glass in their lungs. If there is such a document that you provided, probably one of the leading authorities is Dr. Levin. Several of you mentioned he is going to be releasing this report on September 10 and I would say he is definitely considered a leader in the field. When I talked to him about this issue, he said he had not received any guidance from CDC on the health response to the World Trade Center disaster. So if you do have a document, I would like to have that as part of the record. I would like to close with what I think is the most important aspect, that there is no health coverage for people we call heroes and heroines and we talk about how they selflessly gave their lives or injured themselves in helping others and yet they have no health coverage. I had one firefighter who 3 years later can no longer work. He said he saved two lives, pulled them out of the debris. Now his health condition is so terrible, he can no longer work and he has no health coverage. What are we going to do for health coverage? Mr. Shays. Let us close quickly with that question and get on to our next panel. Is there a comment about health care coverage? Dr. Howard. It is hard to quickly respond to that. Obviously health care provision is not contemplated in these medical screening programs. It is a large public policy issue and I have no expertise. Mr. Shays. So the answer basically is they are not covered and this rests on whose responsibility? Is this a Federal, State or local responsibility? Is this something we need to be debating? The bottom line is you are putting on the record there is no health coverage? Dr. Howard. My understanding is these are medical screening programs, and medical monitoring programs, not medical treatment programs, but in the case of the Mount Sinai program with which I am most familiar, referrals are made for medical treatment when appropriate. Mr. Shays. To be continued. Mrs. Maloney. And we have put in the ``Remember 9/11 Health Act'' which would provide health coverage to those who were injured at September 11. Dr. Heinrich. Just one comment on that final point. Many of us learned in public health that there is something ethically wrong when you screen for disease, find it and then don't treat it. That is the dilemma we are in. Mr. Shays. Let us end on that note because that maybe will get us all thinking about what we do about it. Thank you. You have been an excellent panel. We appreciate your work in government and your effort to make this a better place and to help these victims. Thank you. The Chair will now recognize our second panel. We have Dr. Stephen Levin, co-director of the World Trade Center Worker and Volunteer Medical Screening Program; Dr. Michael Lonski, director, training and program development, Life Matters; Dr. James Melius, administrator, New York State Laborers Health and Safety Fund; Mr. Stan Mark, esq., program director, Asian American Legal Defense and Education Fund; and Ms. Micki Siegel de Hernandez, health and safety director, Communications Workers of America. Mrs. Maloney. May I request we place into the record a report written by the Sierra Club, ``Pollution and Deception at Ground Zero?'' Mr. Shays. Yes. Without objection, so ordered. [The information referred to follows:] [GRAPHIC] [TIFF OMITTED] T8999.074 [GRAPHIC] [TIFF OMITTED] T8999.075 [GRAPHIC] [TIFF OMITTED] T8999.076 [GRAPHIC] [TIFF OMITTED] T8999.077 [GRAPHIC] [TIFF OMITTED] T8999.078 [GRAPHIC] [TIFF OMITTED] T8999.079 [GRAPHIC] [TIFF OMITTED] T8999.080 [GRAPHIC] [TIFF OMITTED] T8999.081 [GRAPHIC] [TIFF OMITTED] T8999.082 [GRAPHIC] [TIFF OMITTED] T8999.083 [GRAPHIC] [TIFF OMITTED] T8999.084 [GRAPHIC] [TIFF OMITTED] T8999.085 [GRAPHIC] [TIFF OMITTED] T8999.086 [GRAPHIC] [TIFF OMITTED] T8999.087 [GRAPHIC] [TIFF OMITTED] T8999.088 [GRAPHIC] [TIFF OMITTED] T8999.089 [Witnesses sworn.] Mr. Shays. I would appreciate it if our witnesses could give their testimony in 5 minutes. We have some time restraints. We have some votes on the floor and testimony on the floor we need to participate in. Dr. Levin, thank you. STATEMENTS OF DR. STEPHEN LEVIN, CO-DIRECTOR OF THE WORLD TRADE CENTER WORKER AND VOLUNTEER MEDICAL SCREENING PROGRAM; DR. MICHAEL LONSKI, DIRECTOR, TRAINING AND PROGRAM DEVELOPMENT, LIFE MATTERS; DR. JAMES MELIUS, ADMINISTRATOR, NEW YORK STATE LABORERS HEALTH AND SAFETY FUND; STAN MARK, ESQ., PROGRAM DIRECTOR, ASIAN AMERICAN LEGAL DEFENSE AND EDUCATION FUND; AND MICKI SIEGEL DE HERNANDEZ, HEALTH AND SAFETY DIRECTOR, COMMUNICATIONS WORKERS OF AMERICA Dr. Levin. I am Stephen Levin, medical director of the Mount Sinai-Selikoff Center for Occupational and Environmental Medicine and I am co-director of the World Trade Center Worker and Volunteer Medical Screening Program. I want to thank Congresswoman Maloney and you, Congressman Shays, for inviting me to speak today about the health consequences of exposures during World Trade Center recovery efforts and what we see as the unmet needs of the people whose health has been affected. Our Center for Occupational and Environmental Medicine at Mount Sinai has a long history of providing medical services to the working people of the New York Metropolitan area, their unions and their employers. We were well known to many of the workers who responded to the attacks on the World Trade Center Towers and to their unions and began seeing responders, evacuees, returning office workers and residents of lower Manhattan within a few weeks of the World Trade Center attacks. It was clear to us almost immediately from this clinical experience that the exposures to the mix of respiratory irritants like pulverized concrete, hydrochloric acid mist and fibrous glass present in the air at and near Ground Zero caused respiratory problems, including sinusitis, laryngitis, asthma and bronchitis, acid reflux from the stomach known as GERDS and that the horrors that many had witnessed there caused stress- related psychological symptoms and depression. Responding to the appeal of organized labor who were aware of the problems their members were developing and whose members made up the majority of the workers and volunteers involved in the rescue and recovery work, the cleanup and the restoration of essential services in lower Manhattan, the New York congressional delegation was successful in securing funds to establish two medical screening programs, one for New York City firefighters and another coordinated by our group at Mount Sinai for all other World Trade Center workers and volunteers, each to evaluate clinically some 12,000 World Trade Center responders. We are grateful to the Centers for Disease Control and to the National Institute for Occupational Safety and Health for their support and their assistance in establishing these important programs whose mission it was to identify those who were ill as a consequence of their World Trade Center efforts and to make sure they were referred for appropriate care but not to provide that care since no resources were made available for treatment of World Trade Center related illnesses or for additional medical testing and individual responder might need. The firefighter and Mount Sinai programs have identified similar health consequences among World Trade Center responders, asthma, bronchitis, sinusitis, laryngitis, digestive problems. These illnesses are remarkably persistent. We analyzed what was found clinically among 250 of the first 500 responders that we examined at the Mount Sinai program and we began seeing responders in August 2002 far too long after the event occurred and reported that nearly half of these men and women still experienced at the time of their examination at least one pulmonary symptom. By that, we mean wheezing, chest tightness, cough or shortness of breath and this was a minimum of 10 months after the September 11 event. Over half had persistent ear, nose and throat symptoms and over half had persistent evidence of psychological distress severe enough to warrant further evaluation by a mental health professional. We recently updated our analysis to include the medical findings of over 1,100 responders seen in our program and that has been referred to several times today. It will be appearing in the MMWR in 2 days. I am not allowed to cite actual data from that figure until the report is released but I can tell you this. The results point to similarly high rates of persistent respiratory, digestive tract and psychological disorders in this larger group. We know that we have examined only a fraction of the workers and volunteers whose health may have been affected by their World Trade Center efforts and there is reason to believe there are many who have not undergone screening examinations who have persistent World Trade Center related illnesses. Fortunately, funding has been obtained from the CDC and NIOSH for medical followup exams of the World Trade Center responders for the next 5 years and we will be able to bring in additional workers for their baseline examinations during this first year of the longer term program. This program will give us an opportunity to evaluate the course of these shorter term illnesses and to some extent the response to various treatment approaches and to identify those who still need medical and psychological care for those conditions that occurred shortly after exposure but there remains the issue of long term consequences of World Trade Center related exposures. This witches brew of airborne materials found at and near Ground Zero where a number of carcinogens, cancer causing agents, including asbestos and the class of compounds known as PAHs, polycyclic aromatic hydrocarbons, the cancer causing chemicals in tobacco smoke. If we are to detect the cancers that may develop as a result of these exposures encountered during the recovery effort at a time when treatment may be more effective, this group of responders has to be followed for at least another 20 plus years since such cancers most often occur at least 20 years after the onset of exposure to the cancer causing agent. I think our description of what happened after the World War I cigarette smoking experience is exactly what we are concerned about here. This is an especially important issue for those who spent long hours without respiratory protection on the pile at Ground Zero where the fires burned until December 2001 and for the workers who cleaned up the office and residential buildings nearby Ground Zero, disturbing dust contaminated with carcinogens day after day for months, no warnings, no training, no masks. Our screening pilot program has found many people who needed followup care for the physical and emotional problems they developed in the course of their World Trade Center efforts. Making sure they obtain adequate care has been a difficult challenge. For many, the workers compensation system should have been a resource but for all too many it has been an obstacle course of claims fought and delayed, almost impossible to navigate for these heroes whose tolerance for additional stress is often very limited. Many have no health insurance. At Mount Sinai, we have received limited funds from private philanthropic sources to provide care for these responders but it isn't enough to meet the need. I believe that a public health response to a public health problem calls for Federal funding to pay for needed care. It shouldn't be left up to a badly fragmented health care system to ensure that the special testing people need and the medication these responders need will be made available. Our experience tells us it simply won't happen. [The prepared statement of Dr. Levin follows:] [GRAPHIC] [TIFF OMITTED] T8999.090 [GRAPHIC] [TIFF OMITTED] T8999.091 [GRAPHIC] [TIFF OMITTED] T8999.092 [GRAPHIC] [TIFF OMITTED] T8999.093 [GRAPHIC] [TIFF OMITTED] T8999.094 Mr. Shays. Thank you, Dr. Levin. Dr. Lonski. Dr. Lonski. Thank you for inviting us to testify today. The most helpful aspect of this hearing so far for me I have to say is that so many people have turned out today to try to continue to understand the after-effects of September 11 and how devastating the impacts are and how tenacious the impacts continue to be. For unless you live and work in New York or have a particular interest or involvement or a capacity or tolerance for understanding the depths of the painful after effects, you miss the fact that each report you have heard today from each of these agencies represents the personal experiences of thousands and thousands of people, active and retired, families and children, of people we have been able to reach out to through our organization and collaborate with other existing programs like Red Cross and Mount Sinai. The fire, the police, the iron workers, the electrical workers, the New York City agency employees, family members, the National Guard, immigrant populations, there is a great deal of despair because the World Trade Center attacks forever altered the way many people see the world. The ensuing grief, trauma, stress, anxiety and despair worsened existing problems. It reactivated negative coping habits such as substance abuse, smoking and overeating. It overwhelmed peoples' abilities to control their emotional response and resulted in increased violence, depression and especially isolation. Just check the corner newsstand to witness the breakdown in September 11 victims coping abilities, policemen setting bombs in train stations, firemen brawling with chairs, volunteers robbing banks, DWIs, extramarital affairs. People in New York are scratching their heads and wondering will it ever end? We are here to tell you from a mental health standpoint, this is just the beginning. In New York, September 11 was a mushroom cloud whose fallout is just now making itself known. My name is Dr. Michael Lonski, Clinical Psychologist, Co- Founder of Life Matters. With me here today are Dr. Evelyn Llewellyn, also Clinical Psychologist, Co-Founder and Executive Director of Life Matters; Stephen Careaga, Executive Director of Firefighters National Trust who so generously underwrites much of our fire union endorsed work with active and retired first responders and families of the Fire Department of New York and board member, Lou Chinal, a September 11 survivor who retired from the Fire Department of New York after 29 years of service and who guides and serves us. Life Matters is a not-for-profit organization created to meet the urgent need for counseling outreach and crisis intervention after the attacks. We teach people to understand, to cope and ultimately heal their trauma. We have embedded clinicians, trusted peers and support personnel in firehouses and social networks giving us the unique ability to quickly find and help people before they take actions that harm themselves or others. We have helped more than 30,000 persons remain healthy, productive and involved on their jobs and in their lives since the terror attacks. We continue to serve an estimated 15,000 New Yorkers a year. Let us put those numbers in perspective. The Red Cross and the New York Psychological Institute estimate there are between 125,000 and 150,000 Manhattan residents alone who have fully diagnosable post-traumatic stress disorder. Mount Sinai researchers working with Ground Zero workers say more than 40 percent are suffering from mental health issues. A recent study by Smithers at Cornell's School of Industrial and Labor Relations found significant evidence of continued depression, stress, anxiety and grief and an increased risk for drinking problems among activity FDNY members post-September 11. So in 3 years, we have reached barely 20 percent of those who most dramatically need our help. Let me explain what someone suffering from PTSD goes through and why this is a problem for us all. PTSD moves on a very predictable course from shock, to upset, to dysfunctionality. Key to their trauma is their perception that the world is not a safe place and that those in charge of protecting us have failed to do so. They are continually flooded with uninvited thoughts, flashbacks, day dreams and rivalry, nightmares and night terrors. Everything begins to look like a threat. To protect themselves, they withdraw emotionally, buffer or medicate themselves or act out. They engage in negative behaviors to feel good, to feel alive or simply to feel anything at all. They become so preoccupied with warding off reminders that they lose their perspective of right and wrong. They fail to discriminate between external and internal triggers, judgment becomes impaired and anyone suffering from PTSD can become a time bomb. Their explosions and implosions rock us all. Suicide, domestic violence, murder, divorce, criminal activity, inappropriate sexual activity, feared and actual debilitating disease and premature death. The loss of the talents and contributions of people who are otherwise vital and valued members of our society, that tragedy envelopes spouses, children, family and friends in the cycle of trauma, grief and loss is then renewed. We lose another generation and terror wins, no further attacks, just collateral damage from the original impact. Those in need must understand that help is available and self help is possible. Those in power must commit the resources, financial and otherwise, required to prevent what uniformed first responders call a BLEVE, a boiling liquid expanding vapor explosion or be prepared to suffer in the fallout. We must rebuild victims' trust and help them reconnect with the world. In our work, we continue to find ways to respect peoples' privacy and their integrity while reaching through their self protective isolation. Through flexible, tested and true, theoretically based, proactive outreach, education and support, we walk with them the paths of health, resiliency and hope. At issue is not just one man's unease but a family's ability to function and ultimately security for us all. Thank you. [The prepared statement of Dr. Lonski follows:] [GRAPHIC] [TIFF OMITTED] T8999.095 [GRAPHIC] [TIFF OMITTED] T8999.096 [GRAPHIC] [TIFF OMITTED] T8999.097 [GRAPHIC] [TIFF OMITTED] T8999.098 [GRAPHIC] [TIFF OMITTED] T8999.099 [GRAPHIC] [TIFF OMITTED] T8999.100 [GRAPHIC] [TIFF OMITTED] T8999.101 [GRAPHIC] [TIFF OMITTED] T8999.102 Mr. Shays. Thank you. Dr. Melius, you have a very long statement. I will be crushed if you don't get to your recommendations, so don't play a trick on me and use up all the other time and force me to not let you do your recommendations. I want to hear every one of your recommendations. Don't leave them out. Dr. Melius. As I have been sitting here, I have been planning to skip most of the beginning of the statement and go directly to the recommendations. Mr. Shays. We really appreciate your recommendations. Very helpful. Dr. Melius. Thank you for holding this hearing and for your continued interest in this issue. I think it is important. Clearly in the absence of anybody at the Federal Government level, the agencies being in charge, it is a badly needed function. I really do applaud you for making this effort. I represent people in the construction industry working for the laborers' union in New York. Throughout the country, I also work with our international union. I have also served many years as an advisor for the firefighters union around the country and have experience in dealing with other emergency incidents with them. My testimony covers the involvement of the construction workers, what our exposures were, what some of our concerns were. As I said, I will skip that and go to the recommendations. Mr. Shays. Your full statement will be in the record. Dr. Melius. I would like to say that one thing that was very important to us as a resource in New York that without would have been a bigger problem to address and that was Mount Sinai Hospital. They really had the expertise and the capability to be of great assistance while these programs were being set up. We were able to refer many people there for treatment. In my statement, I made six recommendations. I will go through each. They deal with both the World Trade Center medical followup as well as with followup for other incidents. The first repeats a point that I think you already made. We need a comprehensive and rapid medical response for these types of incidents. We can't wait a year or two to get a program in place. We need to have people in a coordinated fashion there immediately. We need them there because we can't expect local governments, local construction companies, local agencies to have the expertise, the resources and the capabilities to deal with it. This needs to be set up and included in planning efforts for future disasters. That program can't wait 2 years for setting up a medical program or a year. It needs to be set up as quickly as possible and needs to think about the need for monitoring. The issue Congressman Nadler raised, we need and should have had and in future incidents we need comprehensive environmental sampling that will think about the possible health risks for people involved. It is needed to help protect them and needed to be able to address who is at risk, what type of future medical programs do we need for those who have been exposed. In my testimony, I mentioned some of the frustrations at the time in dealing with both this incident and getting environmental data, as well as with the simultaneous efforts going on with the anthrax incidents where people in the medical community or in my case representing workers involved, where it was very frustrating to figure out who to call to get information. That needs to be developed immediately after these incidents. Three, we also need to recognize these programs need to go on for a long period of time. As I mentioned, I previously worked for both Federal and State Government and have been involved in other incidents usually involving fire departments and response to toxic exposure. One was the Elizabeth chemical control fire in New Jersey across from New York over 20 years ago where there was an immediate response but then nothing was done long term for the people involved. It is difficult to budget that, to estimate what kind of resources may be needed but we have to have a mechanism in place whether through Homeland Security in these instances, through Health and Human Services, I don't know but there should be a program place that can fund those programs over the long term, provide the support and guidance needed to implement that type of program. I think we have already heard some of the problems because people develop programs in response to the resources that were available rather than to projected needs. Because of that, we may never know the number of people that were affected or will be affected from the World Trade Center. This has to be done up front. People have to know full resources will be available. That program has to also be comprehensive and include everyone. We can't make arbitrary decisions based on a street, where people worked on a site, whether they worked or whether they were a member of the general public that were exposed. It may take some time to sort out, some people may need different amounts of medical followup to different degrees but we need to have that comprehensive program in place that covers everybody. My fifth recommendation is that we need to think about the future rights of these people. They need to be protected. This addresses issues related to the workers compensation. A lot of concern about the reluctance of our members and other union members to participate in the registry programs, is because we don't feel the rights of our members are being protected and some of that information may be used against them 10 years from now. Mr. Shays. Give me a short example of how information can be used against you. Dr. Melius. For example, if someone does an analysis of that data, especially given how incomplete it is, it only covers such a small number, and there is a report that says we found in a certain subpopulation no health effects. What if one of our members who could fit the definition of that subpopulation applies for workers compensation? Their employer or insurance company may use the information in that registry to contest that claim. Also, it is not completely clear how their privacy will be protected in that registry. Will somebody be able to go in and get information on them and other participants and somehow use that to discriminate against them in some way? We are particularly sensitive to that given some of the problems with the workers compensation system in New York as well as other States. At the same time, it is important that we assure people there is a long term, comprehensive, compensation program for them. I applaud what you have done so far. Finally is the treatment issue. The programs put in place must include more work on treatment. There needs to be resources for people to get treatment as well as some medical research and effort made to try to determine what are the best treatments. We don't know that for some of the conditions related to the World Trade Center. We need to learn more about that and provide resources. In Mount Sinai and the other programs we are doing an excellent job of referring people but not everyone has complete health insurance, not every physician is as familiar with what kinds of treatment might be needed and there are limitations. People aren't getting the treatment they need because of that. I think that is a disservice to them. Thank you. I will end there and be glad to answer questions. [The prepared statement of Dr. Melius follows:] [GRAPHIC] [TIFF OMITTED] T8999.103 [GRAPHIC] [TIFF OMITTED] T8999.104 [GRAPHIC] [TIFF OMITTED] T8999.105 [GRAPHIC] [TIFF OMITTED] T8999.106 [GRAPHIC] [TIFF OMITTED] T8999.107 [GRAPHIC] [TIFF OMITTED] T8999.108 [GRAPHIC] [TIFF OMITTED] T8999.109 [GRAPHIC] [TIFF OMITTED] T8999.110 Mr. Shays. Thank you very much. Mr. Mark. Mr. Mark. I would like to start with my recommendations. My clients at the Asian American Legal Defense Fund as well as many of the community people I work with support the ``Remembering 9/11 Health Act'' and the fact that it would cover many of the people in the lower East Side and Chinatown who are without insurance or don't have the right insurance coverage. We feel that particular legislation should be passed. In addition, I think it also addresses some of the concerns raised in the previous panel about coordinating efforts. One of the problems we had in my office was we believed that the funding for Mount Sinai would cover treatment as well but we understand that it did not. When we heard that, we felt it really undercut our efforts to try to get funding for our joint clinic work with many of the organizations and specifically partnering with Bellevue Hospital to address the health needs of people in the lower East Side and Chinatown. I would also mention that at this point we are now engaged in this joint clinic. We can't wait for that coordination to take place, we can't wait for that funding to take place, so in the last 4 months or so, we have been going through 400 apartments and visited 400 families, we have done outreach tables in the summer months reaching thousands of people, trying to get people who were harmed by September 11 to participate in this clinic program. We have now booked many appointments for people to be screened and treated at Bellevue Hospital at the Asthma Center. There is at least a month's waiting list. I am bringing this up as a point that studying the health impact shouldn't be limited to Ground Zero but that they extend way beyond Ground Zero and include communities of color in the lower East Side and Chinatown which have not gotten sufficient resources when it comes to health care. My office is a civil rights organization. We represent many garment and restaurant workers on the Lower East Side and Chinatown who work in sweatshops. We also represent people who are South Asians and Muslims, who have been denied due process after September 11, and who have been detained preventatively and secretly. We also have had work in voting rights and on a weekly basis, we register people to vote at the courthouse, about 300 people every week, who are sworn in as new, citizens are registered to vote. Since the September 11 attack, our Federal and local agencies have not fully addressed the public health emergency resulting from the collapse and fallout from the World Trade Center. Lower Manhattan residents in the neighborhoods adjacent to Ground Zero and surrounding areas such as Chinatown and the lower East Side witnessed the attack and now live and work in buildings that are contaminated or recontaminated with asbestos, mercury, lead, dioxin and other toxic compounds. Many have respiratory ailments and lung damage, skin rashes, gastronomical disorders and other illnesses, or express anxiety about their health and the health of their children. Many are under the care of doctors while others living east of Ground Zero are still seeking health coverage and medical treatment for these illnesses. Federal resources for treatment and long term studies must be made available immediately to address the unmet health needs of thousands of people who live and work in lower Manhattan. Furthermore, resources must be made available to strengthen the public health infrastructure in order to meet the threat of chemical or biological attacks such as anthrax. The full scope of the public health emergency and the resulting environmental health impact have not been adequately addressed and acknowledged by the Federal and local government agencies. Government agencies did not conduct representative sampling which uses detection devices laid out in concentric circles from Ground Zero to collect air, dust and water samples to measure the fallout, its range and to gather data. The Center for Disease Control did not issue health advisories urging health professionals to look out for the symptoms of illnesses resulting from the fallout. For months, the dust and stench filled the air throughout lower Manhattan and seeped into the homes and offices, factories and businesses. Trucks hauled debris from the fire at Ground Zero. These trucks and dumpsters were parked on the streets on the lower East Side and Chinatown, along Henry, Clinton and Jefferson Streets and behind Stuyvesant High School. The debris was eventually hauled to the Freshkills Landfill. The World Trade Center dust circulated in the air and was blown throughout lower Manhattan and continued to make people sick. People who live and work in the buildings located in Battery City, John Street, Cedar Street, Liberty Street, Pearl Street and downtown Broadway have testified at public forums and hearings about their poor health and the lack of adequate testing and cleanup. These residents continue to struggle with government agencies to test and clean their buildings still contaminated with dangerous heavy metals and toxic compounds that remain or spread through heat and air conditioning systems, elevators, carpets, window ledges and other common areas. Recontamination remains a serious concern since the clean up 1 year after September 11 was at best incomplete. Without full participation and cooperation to clean an entire building, this leaves the distinct possibility that recontamination would occur, even assuming the initial cleaning for some apartments was properly done for part of the building. During 2002, at community town hall meetings, rallies and marches in New York City and Washington, DC, thousands of Chinatown residents assisted by a group known as Beyond Ground Zero Network, which my office is part of, had demonstrated and demanded that health care coverage, medical treatment and research studies must be at the top of priorities for our government agencies and institutions committed to rebuilding New York. Health care must be made a priority with adequate resources to cover long term treatment and studies for all people affected by September 11 including residents of Chinatown and the lower East Side. Government officials and agencies must be held accountable for the delay in initiating full health coverage, treatment and studies covering the residents of Chinatown and the lower East Side. Given the wide scope of harm and the shortage of resources targeted for health care and the research studies covering people of color living in Chinatown and the lower East Side, we need a stronger commitment from our leaders and institutions to make these resources available. [The prepared statement of Mr. Mark follows:] [GRAPHIC] [TIFF OMITTED] T8999.111 [GRAPHIC] [TIFF OMITTED] T8999.112 [GRAPHIC] [TIFF OMITTED] T8999.113 [GRAPHIC] [TIFF OMITTED] T8999.114 [GRAPHIC] [TIFF OMITTED] T8999.115 [GRAPHIC] [TIFF OMITTED] T8999.116 [GRAPHIC] [TIFF OMITTED] T8999.117 Mr. Shays. Thank you. Ms. Hernandez. Ms. Hernandez. Thank you for keeping this issue current as it has been for us since the beginning. My name is Micki Siegel de Hernandez. I am Director of Health and Safety Programs for the Communications Workers of America and CWA District I which is the northeast district of CWA. I am also the Alternate Community Liaison to the EPA Expert Technical Review Panel, so I also bring a collective view from both residents and also labor groups in the area. I am here today because of the effect the World Trade Center has had on our members. Many of our CWA members have developed September 11 related illnesses. We don't know what the future holds in terms of chronic disease. We believe there are still huge gaps that need to be filled in the government's response to assess the September 11 health effects. Our members have been part of both the evacuation, we had 11 members who died in the collapse of the Towers, we have thousands of members who work in downtown Manhattan and we also had thousands of members who worked at Ground Zero. At Ground Zero, our largest group was the telecommunications workers from Verizon and some from Lucent who repaired the telecommunications infrastructure in New York City. The report that Dr. Levin and also the GAO referred that came from the WTC Worker and Volunteer Medical Screening Program that looked at the sample of 250 of the first 500 responders, 44 percent of that group were CWA members. The World Trade Center Worker and Volunteer Medical Screening Program is severely underfunded. There have never been Federal funds for treatment. It is a wonderful program but it stops. We also don't know what kind of followup care our members are getting. The new Worker and Volunteer Medical Monitoring Program is only funded for another 5 years, so we are talking about approximately three exams for those workers who came for their baseline and again, there is no future. We need some early recognition and treatment of disease. We also believe that the model in terms of the funding from the Federal Government is what should be adhered to. We believe the Consortium of Occupational Health Clinics should play the key role in that continued program. We have also had experience that when there is an employer-sponsored program, not only is it not as good in terms of quality but that information remains varied. We have had that with two employer-sponsored programs, one is with ABC, we represent broadcast technicians at ABC. They did a company-sponsored program early on. We have never received any information about the health of our members who went through that program. With Verizon we also were negotiating with them to have our members be allowed to go to the World Trade Center Screening Program on paid work time. We thought it was that important. We spent many months negotiating and we thought we were getting close. Coincidentally at about the time the World Trade Center program started, Verizon sent a letter home to employees saying they were going to institute their own program, employees could go on paid work time to a number of clinics, not the Consortium of the World Trade Center, and they could go for a one-time free screening by the end of September. They would not be given paid work time to attend the World Trade Center Worker and Volunteer Medical Program. We have asked Verizon since that time what has been the response, what has been the analysis done about their program. We have received no information. When we asked for the total number, not even the names just the total of CWA members who participated, Verizon's response was again this was not information that was tracked, it is embedded in each member's medical records and would require manual effort by a nurse to go through each of the 900 plus records to make this determination. When we asked for general reports or analyses of the findings, not individual medical records, the response was no such reports were prepared. We also heard anecdotally from members that many of the workers comp cases were being controverted meaning that the employer just said no, we don't recognize this is the case, we don't agree this should be a workers comp case, that it is not work related. We tried to get information from the Workers Comp Board to find out for particular employers how many of the cases being applied for were being automatically controverted. We never got that information. Mr. Shays. I don't understand. Is that information not available or it is just not being shared? Ms. Hernandez. From the Workers Comp Board? According to what the GAO said this morning, the Comp Board claims they don't track information in that way. I find that hard to believe but we have never been able to get that. We were able to go to one of the law firms that handled many CWA cases of our members and they did manual search and were only able to find some because of how the cases are applied for in certain parts. They were able to locate some cases only for New York City. Of 18 cases, Verizon cases that were illness related not injury, 16 of them were controverted, meaning the company just said no, we don't believe this is work related. These were for a combination of respiratory illnesses and PTSD. We believe we need additional Federal funding for medical services. There is a great need for medical services. We do not support use of the funds for the World Trade Center Registry. We do not believe the registry is a substitute for a medical screening program, we believe it is diverting resources that could be put to better use. We also believe that due to poor design, the registry cannot yield valid results, nor will it ever be able to answer the questions it claims it will be able to answer about the health of New Yorkers affected by September 11. Poor participation rates further erode the validity of the data collected. Without the statistical power as calculated in the registry protocol, the true extent of specific health effects such as asthma cannot be accurately determined. This can lead to a gross underestimate of disease in the population of affected workers and residents. There is also no apparent system in place for decisions about what research will be conducted using the registry data collected. A couple of the recommendations would be adequate funding for the World Trade Center Worker and Volunteer Medical Program. In the event of future disasters, we need to have a system in place so there is an immediate system workers can turn to. We also need to broaden the scope of who we think of as workers that respond to an emergency not just workers like telecommunications workers but many public sector workers, transit workers at the site. We do not believe additional funding should be provided to the registry as it is currently crafted and also would like to recommend for future emergencies, agencies not be allowed to get rid of laws that protect workers and the public as happened with several of the agencies in the September 11 response such as OSHA who was there on a consultant basis, the DEP who did not enforce their laws for cleanup of asbestos in buildings and so forth. [The prepared statement of Ms. Hernandez follows:] [GRAPHIC] [TIFF OMITTED] T8999.118 [GRAPHIC] [TIFF OMITTED] T8999.119 [GRAPHIC] [TIFF OMITTED] T8999.120 [GRAPHIC] [TIFF OMITTED] T8999.121 [GRAPHIC] [TIFF OMITTED] T8999.122 [GRAPHIC] [TIFF OMITTED] T8999.123 [GRAPHIC] [TIFF OMITTED] T8999.124 [GRAPHIC] [TIFF OMITTED] T8999.125 Mr. Shays. Thank you very much. Mrs. Maloney, you have the floor for 10 minutes. Mrs. Maloney. Thank you all for your testimony. Briefly with 10 words or less, I would like each of you to respond to this question. Has the Federal Government responded adequately and if not, what should they be doing or what needs to be done? Dr. Levin? Has the Federal response been adequate, yes or no, and very briefly, what needs to be done, your top priority in 10 words or less? Dr. Levin. The Government's response has been a partial response. It has enabled us to identify illness among a small section of those who responded and were affected by World Trade Center exposures. What is needed is one, resources to evaluate those who were exposed who have not yet been examined, resources to provide treatment, additional testing when diagnostic work has to be done beyond what screening programs can do and we surely need to have in place a mechanism for a rapid clinical response, an evaluation response and a treatment response should there be disasters in the future that pose the same sorts of risks. Dr. Lonski. It has been mixed. The Federal Government's response has been frustrating for us as an organization. I think you heard today we are probably the only group represented today who does treatment, proactive treatment to not only directly with mental health stresses involved in ongoing work as uniformed and civilian first responders and civilian members after September 11 but we are the only organization that links between the Chinatown community, the Mount Sinais, the labor organizations and tries to get out the word to those people about the kinds of screening and help that are available behind the scenes. Aside from the funding, we mentioned earlier through Firefighters National Trust which allows us to do the only educational, proactive outreach program for the Fire Department of New York in which we go out to active and retired members and help them, give them a tool to identify when they look at themselves and the people around them who they care about what you're looking for in terms of being operationally overloaded. With that tool, those members can identify for themselves and others much better than us. There will never be enough professionals, never enough people from the counseling unit out there. Once they know what to look for, they can help each other get the help available but in terms of our Federal funding through the efforts largely of Mr. Ron Dickens who is the contract supervisor from the New York State Crime Victims Board, the Grant Division, not the Compensation Division, we were able to get two rounds of funding. Unfortunately the frustration with that is the application process for the first grant began in October 2002. Those funds come from the Department of Justice. We were notified in April 2003 and this is for September 11 work, that we were approved for a grant. The first amount of money didn't come to us until July 2003. Mrs. Maloney. That is a challenge but you are over your 10 words. Dr. Lonski. What we need according to Mr. Dickens in helping that process along with Federal funds is to reevaluate the conventional methods of getting moneys out to take out some of the middlemen like the New York State Crime Victims Board and allow the Federal Antiterrorism and Emergency Guidelines to give money directly to organizations like ours. That is recommendation No. 1. Two, in terms of the linkage between stress and medical issues, there are so many studies going on that have been designed by the best minds. Mr. Shays. You are losing me here because her question was much simpler. Mrs. Maloney. We will come back to mental health. My question is has the Federal Government response been adequate or not and if not, what should we be doing briefly, Dr. Melius. Dr. Melius. It is not an adequate program. It is not comprehensive and nobody is in charge or can be held responsible for the program. The program needs to be expanded. We all made recommendations on the way that needs to be done. The numbers of people covered need to be expanded, the agencies need to stop thinking of this as a scientific study. It needs to be scientifically based but it needs to be a program for the people that were impacted by the World Trade Center. That includes many who aren't included in the current program. Finally, it needs to consider the long term needs for treatment, followup, counseling and that needs to be made a part of the program also. Mr. Mark. I would say that we must strengthen the public health infrastructure in order to deal with public health emergencies of the nature of September 11. In addition, I would say there has to be a greater Federal role in coordinating as suggested in your legislation by Government agencies such as HHS or other appropriate entities in order to make sure that the public health and the health of all the residents such as folks in lower Manhattan including the lower East Side and Chinatown, get the treatment. Furthermore, I would say we need to continue to fund two studies that provide for treatment as well as research for people outside of the Ground Zero area. One is a study conducted by SUNY at Stoneybrook, Dr. Anthony Szema and Dr. Alan Iso and other co-authors, who showed a rise and spike in asthma among Chinese children within a 5 mile radius from Ground Zero. Those incidents that occurred at least warrant further research to show the full impact of September 11. Furthermore, Dr. Joan Reibman had a sample of about 2,000 people in the Chatham Green, Chatham Towers and Smith Projects on the lower East side of Chinatown. She showed a spike in new incidences of asthma and respiratory problems. So in both instances, the health problems that resulted from September 11 go way beyond the area downtown and Ground Zero. It extends to all areas and neighborhoods. I described that in my written testimony. You have to fund these institutions such as the hospital as well as the asthma center run by Dr. Joan Reibman and institutions like Charles B. Wang Health Center which helped address the needs of people in the local area. I think there are other things mentioned in my testimony but I would say there has to be better coordination with an increased Federal role in making sure there are no gaps and that the response is an anticipatory mode as opposed to a reactive mode. Ms. Hernandez. The quick answer is no, there has not been an adequate response with a few exceptions. I would like to add that there has not been an adequate response at the State level either or at the city level. Certainly to help the current problem, we need more funding for the World Trade Center Worker and Volunteer Medical Program that extends the boundaries to whoever needs it and includes residents. We need a greater role for the Federal Government in the coordination for this and for future events. We also need a characterization. We still don't know how much contamination is left in downtown Manhattan. No workplaces have ever been assessed by any agency, so we need a scientific characterization to understand what kind of ongoing exposures may still be occurring. Mrs. Maloney. I want to note that all of your comments are encompassed in the ``Remember 9/11 Health Act'' that is offered by the chairman and myself. It covers treatment, continued monitoring throughout the life of a person, research to find out what these toxins mean and how to better prepare for them and coordination under Health and Human Services. I urge you to look at that bill and see if you can help us gain more support because we do need at the least to cover the health needs of the people who sacrificed their health coming to help others. Dr. Lonski, the GAO recognized six entities who were providing health monitoring but mental health was not being monitored within any of these six programs. Is that correct? Dr. Lonski. I don't know. I do know that we are not wired to wait for the results of these scientifically based studies. What we know is what you know. We know all the personal stories, anguish and grief and the fears. Mrs. Maloney. How great is the need? If we are not monitoring, we have a sense from these programs how many people are sick because they are monitoring them, they are documenting their physical sickness is totally related to September 11. That is one purpose of these monitoring programs. They are scientifically documenting that people are sick, so we have a sense of what is out there. We need a better sense but there is no one documenting, according to the GAO report, mental health. Dr. Lonski. We reported statistics earlier from the Red Cross and the New York State Psychiatric Institute that estimate that up to 150,000 New Yorkers, Manhattanites alone have fully diagnosable PTSD, not talking about post traumatic stress, not talking about the New York Times Sunday study that links stress equals illness, not talking about the study that was in the paper the other day, $300 billion in costs of stress, health related stress issues in this country alone. When we go into the firehouses, we don't argue. If we can be the front end engine to get out there and let those people know whether it is construction, Chinatown, wherever it is, there is still help available, we need to know once we get them that there is money from the Federal Government, the State, the city, somebody can pay for the treatment. What kind of treatment? Somebody used the term mixed exposures in describing what happened at Ground Zero. That reminded me of a couple of guys who recently got married after September 11 who worked in what they described as a sacred, toxic, waste zone for 7 months doing rescue and recovery. What does that mean to them? It means they are afraid to tell their wives they are afraid to have children with them because they don't know genetically what is going to happen to those babies and they don't know what is going to happen to them 5, 10, or 20 years down the road. I don't now how much of that is a medical condition brewing or how much is stress related. We know there isn't enough money to pay for these guys to get the kinds of proactive medical screenings they are looking for. They are looking for a full body scan once a year so that if there is something percolating in their system, the experts can help them get help right now for it. Open the windows of opportunity to other populations. Mr. Shays. I would like to ask a few questions. First, I want to know who is getting help, who has such good coverage that they are not at the table? Tell me who they are? Is it the fireman? I believe that because there would be such a public outcry if all those who were impacted were not getting help. Some are getting help. I want to know who the some are. Dr. Levin. I can speak for the Fire Department's program. I know it indirectly and I know they do provide care to the firefighters who have been harmed by their exposure there. We have in our program at Mount Sinai philanthropic sources to provide care to some individuals we have identified mainly through our screening program. Mr. Shays. Are you choosing which lives and which dies? That is an exaggeration but are you helping everyone or just deciding who gets help and who doesn't? Dr. Levin. We take on the responsibility of trying to assure that every individual we identify who needs care gets into care in some fashion, some through our supported programs, some through ordinary medical channels if they have insurance, some through workers comp in the relatively rare instances that these occupational disease cases are accepted by the insurers. Mr. Shays. The workers comp issue, they are sick plus they can't work. Dr. Levin. No. Some are working and ill, working with symptoms because if they go out because of their illness, the maximum they can get through a long and difficult process is $400 a week in New York State if they are declared totally disabled. Most of the people who went down to that Ground Zero area were making much more than that in order to pay their mortgage or rent. It is hard for them to accommodate to $400 a week. What they don't get is access to medical care and their medications. Mr. Shays. Someone who has basically good insurance, the firefighters are getting their health care needs but are working on the job, still in the job. Dr. Levin. Some. Mr. Shays. And some are getting compensation. They aren't limited to $400 are they? Dr. Levin. The firefighters have a different program entirely. Mr. Shays. It strikes me that the firefighters, basically because they do work in this kind of stuff, this is not new experience as a general rule? Dr. Levin. I would not agree with that. I don't think they would either even though they have fought many fires including some toxic fires. The breadth and seriousness of what they encountered down there often without adequate respiratory protection has yielded a rate of respiratory problems never before seen. Mr. Shays. That is because rather than putting out a fire in the common sense, they were helping to do rescue and move construction material in some cases? Dr. Levin. Day after day, 12-16 hour days on that pile. Mr. Shays. What are the parallels and I have no right as a doctor given that I am not to make these analyses but I will tell you as someone who sat in on countless hearings on illnesses, the one thing that impressed me is when people are under stress, their system functions differently and may become more receptive to serous illness. There was huge stress here. Tell me who is getting help. Mrs. Maloney. May I ask a clarifying question? Dr. Levin, if someone is a firefighter and comes to you for help, his insurance and his job covers it but if they become so ill they can no longer work, don't they lose their health coverage? Dr. Levin. Let us not talk about the firefighters who are in a very particular position. The construction workers are exactly as you said. Mrs. Maloney. Workers have told me they have become so sick that they lose their job and then don't have health benefits. Mr. Shays. That is why I want to go there. It is easier to find out who is getting health care and maybe the compensation because there are less of them. Firefighters would tend to have a better shot. Dr. Levin. Yes. Mr. Shays. Who else? Dr. Melius. I think the unionized construction work force would as long as they can continue to work. Once they stop working either because of economic down turn or because they are disabled, then they lose their health coverage after a period of time, so they become more vulnerable. The other factor depends on the health condition they have and the type of treatment, how much coverage they have, how much medication, how much of the medication is covered. Medication costs can get into the thousands of dollars per year that may or may not be covered depending on their health plan. We have people that work in construction and other jobs with no health coverage and are certainly the most vulnerable. Mr. Shays. The people who can come to the hospital to basically have their condition reviewed are workers not residents? Dr. Levin. Right. The residents can come to our Center for Occupational and Environmental Medicine but cannot get access to that screening program that is federally funded. Mr. Shays. But you do not take on the firefighters or you do? Dr. Levin. The New York City firefighters have their own program and are not eligible to be screened in our program. They can come to us for treatment. Mr. Shays. Their treatment is covered by their own plans? Dr. Levin. If that is possible. Wherever that isn't available, we will provide care with no out of pocket expenses for them as we do for all the others who come to us in the treatment program because our mission is to provide care with no out of pocket expenses. We will accept insurance wherever we can get it to preserve the resources of the program. Mr. Shays. You have very important points you want to make. Dr. Lonski. Dr. Lonski. I would like to echo what Dr. Levin said. If you think it is confusing to you about what is available, you should see what happens to these guys and their family members across the board when they try to go for help. They are afraid to go. Once they get into the system and start to file the paperwork as soon as it breaks down, there is almost an immediate feeling of what is the use. It is the same old nonsense over and over again. I would recommend to the extent that a clear communication can come out of these hearings about what exactly is available with all the six different surveys going on, how to get in, who is still eligible, what the filing dates are, that would be helpful because the people who are still trying to get help can't find their way through the morass and don't have the emotional stamina to put up with it. Mr. Shays. We would have the returning soldiers from the Gulf war testify after the government would say no one is sick and their testimony was they were sick, and you could tell they were sick and they had documentation they were sick and were being told it was basically post-traumatic stress disorder and it wasn't physical. We then started to switch it so they went first and the Government came second. So we got through that hurdle and the Government finally acknowledged it. There was enough pressure on us that we needed to deal with this issue. I am not feeling the pressure from the ill folks and maybe partly it is because it was the war in the Gulf, it was clearly a Federal responsibility, here because it is all three, it is being deflected. Dr. Levin. I think what also is happening is that many people who do have insurance or have the capacity to pay out of pocket which is more limited, are seeking care through the regular general medical health care system. The problem that has been identified and talked about is the care people get from the regular medical system is very uneven. That is because physicians in our country are not trained in occupational and environmental medicine and have too little experience knowing how to deal with such. Mr. Shays. The parallel to the Department of Veterans Affairs was out of the thousands and thousands of doctors there were only two that knew this kind of treatment. Our military was in their workplace, it was toxic, there were parasites, they were being given medicines they shouldn't be given, drugs they shouldn't be given and so forth. First, we didn't properly monitor from day one and it would strike me any report this committee comes up with there should be a Federal immediate response to any type of tragedy that comes in and tests the condition of the work environment. We understand why that didn't happen in this instance. We wanted to jump in right away but there needs to be a mechanism to do that. There needed to be absolute requirements on the workers that they have proper equipment and if they wanted to go in, people should have held them back until they had better equipment because in trying to save a life, they put their own lives in huge danger. It seems to me you need to monitor and we need to sort out whether it is Federal, State or local but there needs to be the monitoring, Federal dollars maybe but constant monitoring of the condition, knowing the pool we are dealing with and then they need counseling, health care. Lord knows what it must be like for the families and individuals involved. I am going to encourage my staff to do some additional homework on this without a hearing to try to make an assessment. I don't think we can get a report done before we adjourn but it will be my goal to make sure this subcommittee follows up on this because it simply has to happen. Mrs. Maloney. I wanted to thank you for your leadership and state at the very least we can followup on Dr. Lonski's recommendation that we come forward with a listing of what is available, where people can go which would be helpful. All of you pointed out we need treatment and I thank all of you for your work. Mr. Shays. Dr. Lonski. Dr. Lonski. Our treatment request is for funding because in 3 weeks our Department of Justice grant will expire, in 3 weeks and there is no, as of yesterday morning from Mr. Dickens, there is no Federal funding available to organizations like ours direct or through grants. Mr. Shays. When does other funding run out? Mr. Levin. For the monitoring program, we will continue for another 5 years. Mr. Mark. In the current registry, I believe there would be much greater participation if it was publicized that people would be given treatment as well and not wait 2 years later for its startup. I would add that any type of monitoring or response must include an educational campaign not only for doctors but come from the CDC, and also a campaign that actually tells people what is available and they will get treatment. That would be an incentive to step forward and participate in long term studies. Ms. Hernandez. I agree with what Stan said. We need a long term solution to this problem. One thing clear from the beginning is every step of the way has been frustration and piecemeal and if we can start pulling that together, I think that would go a long way to protecting the health of our workers and the residents. Mr. Melius. I have nothing further. Mr. Shays. I appreciate your getting us started with recommendations. We appreciate the testimony of all our witnesses on both panels. If there is nothing further, we will adjourn. [Whereupon, at 3:05 p.m., the subcommittee was adjourned.] [The prepared statement of Hon. 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