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WTC health expert: The need to reauthorize the September 11th Victim Compensation Fund

Michael Dowling and Dr. Jacqueline Moline at the Northwell Health WTC Clinic in Queens.

Written testimony before the Committee on the Judiciary Subcommittee on the Constitution, Civil Rights and Civil Liberties United States House of Representatives

WASHINGTON, DC —

Good morning Chairman Cohen, Ranking Member Johnson, Members of the Committee.

I am honored to be here this morning. My name is Dr. Jacqueline Moline. I am a board certified physician, specializing in Occupational and Environmental Medicine. I am currently the Chairperson of the Department of Occupational Medicine, Epidemiology and Prevention at the Zucker School of Medicine at Hofstra University/Northwell Health. I am the Director of the Northwell Health Queens World Trade Center Health Program. My specialty, occupational and environmental medicine, deals with the impact of exposures on the health of individuals. It is part of Preventive Medicine, since we know that individuals without these exposures would likely not be afflicted with the conditions they later develop.

Prior to my current position, I worked at the Mount Sinai School of Medicine, where I collaborated with amazing physicians who had dedicated their careers to the treating patients experiencing the health effects of asbestos exposure. I evaluated hundreds of workers who had been exposed to asbestos decades earlier; we know that the health effects from asbestos exposure take years to develop. On September 11th, I, like every person in New York City, watched in shock and horror as our nation was attacked. Shortly after the towers collapsed, I, along with all physicians in New York City, was called to the hospital as part of the all-hands-on deck coverage. Tragically, there was little we could do that day. However, based on our knowledge of the potential for health effects related to asbestos and the other 150 toxicants individuals were exposed on 9/11, we knew that there was potential for disease – in the short term, and the long term. We knew the air wasn’t safe to breathe, but our immediate concern was for those with acute health effects, since we knew that other diseases would take years to develop.

At Mount Sinai, we began treating patients with World Trade Center related health conditions in September 2001. Through the tremendous efforts of the New York Congressional Delegation and organized labor, in April 2002 we were given one year of funding to begin the medical surveillance programs for rescue and recovery workers, construction workers and volunteers who were exposed at “the pile,” and surrounding areas after 9/11.

These surveillance programs later evolved into the WTC Health Program, authorized by the James Zadroga Act of 2010, which monitors and treats World Trade Center related health problems. Initially in 2002, we were only able to evaluate patients and tell them what their health conditions were – we were not given funding for and not allowed to provide treatment. This initial program was extended one year, and we continued our partnership with SUNY Stony Brook, Queens College, New York University, and Rutgers University to see patients in locations convenient for them. In 2004, we were awarded a five year contract to continue the medical screening program, and to have patients come back for repeat, or monitoring examinations. Similar contracts were awarded to the other four institutions. We were still not able to treat the patients we saw, even if they had World Trade Center related conditions; we had to refer them to other clinicians, or to a WTC treatment program we had started through philanthropic donations, not through government funding. As part of our contract, we were prohibited from collecting data using federal dollars. We could evaluate the patients, but we needed separate grants to be able to describe what we were finding in these patients. In 2006, on the fifth anniversary of the WTC disaster, the federal government allowed our programs to treat patients with World Trade Center conditions. This was a great day for our patients, and allowed us to provide the high quality care these men and women deserved, from clinicians who were experts in identifying World Trade Center related health diseases. The grant ended in 2009; then there were yearly scrambles, and many trips to Capitol Hill, that allowed continued appropriations for the WTC health programs to continue until 2011, when funding through the Zadroga Act became available. Seventy five years of funding for medical care for disorders related to the World Trade Center, as well as dedicated research into these diseases was provided. The Victim’s Compensation Fund was re-established, but only for five years.

WTC Health Program is nationwide effort

As of March 31, 2019, 95,320 first responders – including those first responders who came from every state in our nation, and survivors - those residents, school children and individuals who worked in lower Manhattan and returned to their offices and businesses - have been evaluated. There was a tremendous response throughout our country after we were attacked. Yes, it was an attack in New York City, but it was an attack on our nation, and individuals from every state participated in the rescue and recovery efforts. Over time, some individuals who initially lived in the metropolitan New York area have moved or retired to different parts of the country. As a result, as part of the WTC Health Program, there is a national program dedicated to monitoring the health of, and providing care for WTC responders and survivors who live outside of the New York metropolitan area. As of May 2019, 6,732 individuals have enrolled in the national program. Not only first responders were affected after the Towers fell. Downtown Manhattan, home to thousands of residents, was blanketed in thick dust. Individuals who worked in lower Manhattan, including the financial district, returned to work within a week of the disaster when the stock markets re-opened and businesses set about cleaning up and getting back to work. Residents returned to their homes, often inadequately cleaned, and began to rebuild their lives in an area devastated by the collapse of around 270 floors of buildings. School children, who had been evacuated from the places of learning on September 11th, returned to their schools, like Lila sitting here with me, despite fires that continued to rage at Ground Zero, and dust that was elaborated from the extensive recovery efforts that continued through May 30, 2002. Thankfully, these survivors, the neighborhood residents, school children and building re-occupants are also covered by the Zadroga Act, and the number of survivors entering the program has increased dramatically in the past several years. There has been extraordinary growth in the survivor program over the past eight years: an astonishing increase of 327%.

Exposures to the toxicants at the World Trade Center caused immediate health effects – we have all seen the pictures of dust laden first responders and building occupants – these conditions occurred whether you were a first responder, building re-occupant, school child, or construction worker. Many people developed immediate respiratory symptoms. This was the first wave of disease. As was outlined in the Environmental Health Perspectives by Dr. Mayris Webber and colleagues in 2009, 53% of firefighters developed a cough, and 41% developed gastroesophageal reflux disease within the first year after 9/11 (1). In 2006, Dr. Robin Herbert and I, along with many of our colleagues, described the health effects for police officers, construction workers and other responders who had health problems 1-3 years after 9/11 (2). Dr. Shao Lin, Dr. Joan Reibman and their colleagues described similar health findings among community residents who were exposed to the same toxicants, simply by living or working in the area for months after 9/11 (3). These conditions persist, and constitute the second wave of diseases; the initial conditions improved for some, but for many people, they have continued to have health effects related to their 9/11 exposures. Dr. Juan Wisnivesky and others published a paper describing the lasting health effects from 9/11 in 2011 (4).

Rates of asthma that developed following 9/11 were elevated, along with sinus disease, gastrointestinal issues, post-traumatic stress disease and other health problems. As my colleague Dr. Benjamin Luft and colleagues have described, for those individuals with both physical and mental health conditions related to their WTC exposures, these co-morbidities have contributed to worse health (5). A copy of all these publications is attached to my written testimony.

Now here we are, nearly 20 years later. Unfortunately, we have moved into the third wave of diseases. For example, over 50% of firefighters who worked at the World Trade Center site have developed a respiratory condition. While people continue to suffer from aerodigestive disorders and mental health conditions, we are seeing additional diseases. As someone who specializes in occupational diseases, I am used to diseases with long latency – asbestos, that I discussed earlier in my testimony – is one of the most well-known examples of an exposure that can cause disease decades – 40, 50, 60 or more years after someone has had exposure. While we do know a lot about asbestos, we do not know a lot about the actual dust and fumes that enveloped lower Manhattan and thousands of people. There was inadequate measurement for fumes in the week after 9/11, so we do not have a good sense of what was in the air, and what we, as clinicians, should look out for. I would like to reiterate that as medical professionals, we did not think then, and it is amply apparent now, that the air was safe to breathe.

The WTC Health Program is now collecting additional data on diseases that have been classified as WTC-related. This is critical, since early data collection on who was exposed was lacking. Further research is ongoing to determine whether there will be sufficient evidence to add additional disorders to the list of conditions, which now includes respiratory conditions, mental health conditions, certain gastrointestinal conditions, and of course, cancer. Since 2012, when over 50 cancers were considered to be WTC-related, there have been 11,824 people with cancers certified by the program. This includes 2,614 prostate cancers, 552 lung cancers, 741 breast cancers, as well as over 35 male breast cancers, 667 thyroid cancers, and dozens more. The survivor program has had 3,030 individuals with cancers, and in the national program, there has been an increase in the number of cancer cases certified: from 7 in 2013 to 708 in 2018.

Blood cancers, such as leukemia, lymphoma, and multiple myeloma, were identified within several years of September 11th in responders, survivors and school children, but it is expected that more of these cancers will continue to occur in the future. To date, there have been 571 cases of lymphoma certified. Solid tumors, like lung cancer, prostate cancer, thyroid cancer, kidney cancer, and breast cancer, occur years if not decades after exposures. Given that those exposed at Ground Zero were exposed to over 150 toxicants in that deadly brew, there is concern for what is yet to come with respect to cancers. Nearly 20,000 children attended school below Houston Street on September 11, 2001, and were exposed to the toxic mixture. We do not know what World Trade Center diseases these now-young adults will develop. Overall, approximately 49,000 people have been certified for at least one WTC health conditions in the responder and survivor programs, and over 6,200 have been certified for WTC health conditions in the national program. The effects from exposures at 9/11 have not only been measured in the numbers of deaths, numbers of cancers, number of lung transplants, or countless cases of new asthma. Studies have shown the impact of 9/11 exposures, not only on health, but also on employment, as individuals with WTC related health conditions were more likely to retire before age 60 (6).

Health impact of 9/11

Sometimes it’s easier to understand what the health impact of 9/11 is by learning about a real person, rather than hearing statistics and types of diseases that have occurred. I’d like to tell you about Ellie Engler, who is in the hearing room today and has allowed me to give a brief description of her health issues. She has had significant health problems since 9/11. Ellie, a certified industrial hygienist, was in charge of health and safety for the United Federation of Teachers on September 11, 2001. She went into every school in lower Manhattan and assessed the immediate health risks to staff and children in these schools. In 2008, she developed breast cancer – a second primary, since she has been cured of breast cancer in 1985, and this new tumor was of a different genetic signature than her first cancer. She has also had a worsening of her asthma, a condition she developed shortly after 9/11 but was under control. Recently, she has had recurrent asthma attacks that have been difficult to control. Ellie, like so many in the WTC community, has fought these illnesses with courage. She realized that all of the staff at these schools should enroll in the WTC health program if they had any WTC-related conditions and began outreach to over 500 teachers and school staff. In addition to ensuring that the staff were aware of the WTC health programs, she began to advocate on behalf of the 19,871 school children in lower Manhattan, highlighting the need for outreach to these students, who have now all graduated from high school and are all over the country. Her clinical future, like so many others, is uncertain, and she will require close monitoring and care for the rest of her life. She is my hero and the hero to many in the WTC community.

On September 11, 2001, we lost 343 members of FDNY, 23 members of NYPD (7), 8 EMS workers from private emergency medical services (8), 37 Port Authority police officers (7), and countless others who were simply going to work, or were in lower Manhattan. 2,973 people lost their lives on that day (7). Since 9/11, we have become aware of an additional 204 police officers (9), 180 FDNY firefighters (10), and in total, an estimated 2,000 responders and survivors who have died as a result of 9/11 illnesses. Soon, the day will come when there are more people who have died of WTC related illnesses after 9/11 than perished on that horrible day when our nation was attacked. As a doctor, I don’t have a crystal ball, but based on the trends we have seen in the research, the numbers of affected individuals – those with life threatening injuries – will continue in this third wave of 9/11 diseases. Throughout our country, brave men and women who were exposed to the fallout from 9/11 will continue to develop cancers at rates above what might be expected absent these exposures. Because of the monitoring programs, we are able to identify new clusters of diseases that will develop – such as neurological conditions, auto-immune disorders, and other diseases we haven’t thought of yet. The World Trade Center registry recently reported that those who were injured on 9/11 had lower life satisfaction and more functional impairment after fifteen years

I consider myself fortunate to have been in New York City on 9/11 – so that I could contribute to caring for the thousands of men and women who suffered occupational and environmental exposures from the World Trade Center dust and fumes. Being able to serve my patients, and our nation, as a physician involved in the WTC Health Programs is one of the greatest honors of my life. I would be happy to take questions. (11). We expect this type of functional impairment to continue to grow in WTC exposed individuals.

Sources

1. Webber, M. P., J. Gustave, R. Lee, J. K. Niles, K. Kelly, H. W. Cohen and D. J. Prezant (2009). "Trends in respiratory symptoms of firefighters exposed to the World Trade Center disaster: 2001-2005." Environmental Health Perspectives 117(6): 975-980.

2. Herbert, R., J. Moline, G. S. Skloot, K. Metzger, S. Baron, B. Luft, S. Markowitz, I. Udasin, D. Harrison, D. Stein, A. C. Todd, P. Enright, J. Mager Stellman, P. J. Landrigan and S. Levin (2006). "The World Trade Center disaster and the health of workers: Five-year assessment of a unique medical screening program." Environmental Health Perspectives 114(12): 1853-1858.

3. Lin, S., J. Reibman, J. A. Bowers, S.-A. Hwang, A. Hoerning, M. I. Gomez and E. F. Fitzgerald (2005). "Upper respiratory symptoms and other health effects among residents living near the World Trade Center site after September 11, 2001." American Journal of Epidemiology 162(2): 499-507.

4. Wisnivesky, J. P., S. L. Teitelbaum, A. C. Todd, P. Boffetta, M. Crane, L. Crowley, R. E. de la Hoz, C. Dellenbaugh, D. Harrison, R. Herbert, H. Kim, Y. Jeon, J. Kaplan, C. L. Katz, S. Levin, B. Luft, S. Markowitz, J. Moline, F. Ozbay, R. H. Pietrzak, M. Shapiro, V. Sharma, G. S. Skloot, S. Southwick, L. A. Stevenson, I. Udasin, S. Wallenstein and P. Landrigan (2011). "Persistence of multiple illnesses in World Trade Center rescue and recovery workers: a cohort study." The Lancet 378: 888-897.

5. Luft, B., C. Schechter, R. Kotov, J. Broihier, D. Reissman, K. Guerrera, I. Udasin, J. Moline, D. Harrison, G. Friedman-Jimenez, R. Pietrzak, S. Southwick and E. Broment (2012). "Exposure, probable PTSD and lower respiratory illness among World Trade Center rescue, recovery and clean-up workers." Psychological Medicine 42(5): 1069-1079.

6. Yu, S., K. Seil and J. Magsood (2019). "Impact of health on early retirement and post-retirement income loss among survivors of the 11 September 2001 World Trade Center disaster." International Journal of Environmental Health Research and Public Health 16(7): 2-12.

7. National Commission on Terrorist Attacks upon the United States, “The 9/11 Commission Report,” https://www.9-11commission.gov/report/, accessed on June 3, 2019.

8. Wikipedia, “Emergency Workers Killed in the September 11 Attacks,” https://en.wikipedia.org/wiki/Emergency_workers_killed_in_the_September_11_attacks, accessed June 3, 2019.

9. New York City Police Department, “9/11 Tribute,” https://www1.nyc.gov/site/nypd/about/memorials/9-11-tribute.page, accessed on June 3, 2019.

10. Workers’ Compensation Institute, “Death Toll from Cancer for 9/11 Responders Expected to Outnumber Victims of Attack,” https://www.wci360.com/death-toll-from-cancer-for-9-11-responders-expected-to-outnumber-victims-of-attack/, accessed on June 3, 2019.

11. Gargano, L., H. K. Mok, M. H. Jacobson, P. Frazier, S. K. Garrey, L. Petrspric, J. and R. M. Brackbill (2019). "Comparing life satisfaction and functioning 15 years after September 11, 2001 among survivors with and without injuries: a mixed-method study." Quality Life Research: [Epub ahead of print].