mention representative maloney, the sponsor of the bill and representative nadler, and representative king i see who joined the committee today and our representatives, yvette clarke, eliot engel and leonard lance, a co-sponsor. since day one you fought tirelessly to make sure the responders are cared for and i'm proud to fight alongside you. beyond the loss of life we know with great documentation the first responders are suffering debilitating illnesses from the aftermath. in fact, more than 100 firefighters and 50 law enforcement officers have lost their lives to wtc related health conditions. additionally active duty firefighters and ems personnel and 550 law enforcement officers were forced to retire due to wtc related health conditions. we now have a deep understanding of how the tons of dust, glass and fragments released in to the

air affected first responders. ailment includes mental health conditions and cancer. and that is why the james zadroga 9/11 health and compensation signed into law in 2011 is so critical to monitor and screen eligible responders and provide medical treatment for those suffering from world trade center diseases. but what is important to note is this isn't there to provide health insurance. these are conditions which are chronic in nature and require expertise to treat. this is why it provides networks of clinics and providers trained to treat these diseases and ensures that providers and survivors bear no out-of-pocket costs associated with these particular health conditions and it provides monitoring and treatment services for more than 71,000 responders and survivors.

they reside in every state and in 429 of the 435 congressional districts. if some of you don't know, the law is named for james zadroga, a new jersey hero who responded on 9/11 and spent hundreds of hours digging through debris and died in 2006 from respiratory failure after exposure to toxic dust at the world trade center site. like him, thousands of people from all over the country came to the aid of the country and those at ground zero and those responders and survivors should not be abandoned, and i hope we can expand the program without delay. i only have 30 seconds left for mr. engel, but i apologize and i yield to him. >> thank you for yielding and let me agree with everything you said. in the aftermath of september 11th, it is estimated that up to 400,000 americans were exposed to copious amounts of smoke and toxic substances

such as asbestos. now many of our heroes suffer from these debilitating conditions. cancer, depression, post-traumatic stress disorder and it goes on and on and it is heartbreaking that the 9/11 survivors and first responders have already given so much and must now carry the burden of the long ailments and the very least we can do is to help them. and i was proud to be a co-sponsor of the james zadroga and proud to be a co-sponsor of the reauthorization today. a failure on congress' part to pass this legislation would constitute an egregious affront to the americans who gave so much on 9/11 in service to their country. and i specifically say americans because the population of those who benefit from this reauthorization spans the entire united states. it is 429 out of the 435 congressional districts benefit from these programs so this is an issue of national

performance. so the first responders who rely on the world trade center health program did not hesitate to risk their lives for fellow americans on 9/11, and we should not hesitate to care for them now so it is critical of importance that we permanently reauthorize the james zadroga 9/11 health and compensation act. thank you mr. chairman. >> chairman thanks the gentleman. and as usual, all members' opening statements, written opening statements will be made part of the record. that concludes our time for opening statement. i have an unanimous consent request. i'd like to submit the following documents for the record. statements from representative peter king, new york second district. from the international association of firefighters. from the sergeants benevolent association. from the national association of police organizations. and an article from the new york city patrolman's benevolent association featuring mr. david howley.

without objection, so ordered. we have two panels today. on the first panel we have dr. john howard, director, national institute for occupational safety and health. >> thank you very much for coming today, dr. howard. your written statement will be made part of the record. you'll be recognized for five minutes to make your opening statement. at this time you are recognized. welcome. >> thank you, mr. chairman and distinguished members of the committee. my name is john howard and i'm the administrator of the world trade center health program. i'm pleased to appear before you today to discuss the program and those it serves who responded to or survived the september 11, 2001, terrorist attacks on new york city and those who responded at the pentagon and in shanksville, pennsylvania. they responded to an epic disaster and as a result suffer mental and physical injury, illness and the risk of premature death.

the program members responded to the 9/11 disaster from all 50 states, and it has been stated from 429 of 435 congressional districts. the original effort to care for those affected by 9/11 toxic exposures operated as a series of cooperative agreements and grants. as a discretionary funded program it depended on year to year appropriations making it challenging to plan adequately for the members' ongoing health needs. in january of 2011 as stated, the james zadroga 9/11 health and compensation act became law. stabilization of funding allows the program to more adequately care for 9/11 responders. in calendar year 2014, of the 71,942 current members enrolled, 20,883 members received treatment from health conditions arising from hazardous exposures

to 9/11 and 28,059 received health monitoring to ensure medical intervention for any developing health condition specified for coverage by the program. since the implementation members have been treated for a number of different health conditions. for example 11,473 members have been treated for asthma. 6,672 have been treated for post-traumatic stress disorder. and 6,497 members have been treated for chronic respiratory disorders. the majority of the members suffer from multiple mental and physical health conditions and take multiple medications for these conditions. certain types of cancer were added to the list of health conditions covered in late 2012. since then the program has certified 4,265 cases of cancer. the world trade center health program fills a unique need in the lives of our members and for our society.

first, members are evaluated and treated by medical providers who have a depth of experience dating back to september 11, 2001, and the physical and mental health needs of 9/11 responders and survivors. they are very familiar with. their expensive clinical experience with the responder and survivor population and the understanding of the role of exposure in causing disease exceeds the training of providers unfamiliar with the types of exposures and health conditions common to the 9/11 population. and how to make the connection between exposure and illness that the zadroga act requires. second, our members are receiving health care that cannot be provided or only provided with great difficulty by other types of insurance plans. for example, health insurance plans do not routinely cover

work-related health conditions, leaving such coverage to workers' compensation insurance. however, workers' compensation insurance presents coverage challenges to members because their 9/11 health conditions often first manifest after 9/11, many years later, beyond the statute of limitations found in most state worker compensation laws. the world trade center health program serves a vital role in overcoming the difficulties that members might otherwise experience in its absence. without the program, 9/11 responders and survivors might end up in limbo instead of in treatment. third, by providing evaluation and treatment for those most affected by 9/11 as a unified co-hort, the program greatly aids not only the individual members but also the national understanding of the long-term

health effects of 9/11, including its effects on children. the program helps us better prepare for the medical needs arising from large-scale, long-duration disasters that might not hopefully occur ever in the future. thank you for the opportunity to testify, and i'm happy to answer any questions you may have. >> chair thanks the gentlemen, and i'll begin the questioning and recognize myself five minutes for that purpose. dr. howard, would you continue to elaborate a little bit on the history of the world trade center health program, how it came to be and how it has changed over time? >> thank you. the program started as a immediate response to what doctors were seeing, especially with the new york city fire department in what was called at that time a world trade center cough. and those doctors and others

that were recruited to the effort began to observe that individuals who were responding were becoming ill from inhalation of the dust and the toxins contained in the dust. so immediately through fema appropriations, cdc and then the national institute for occupational safety and health was able to offer grants and cooperative agreements so the doctors could begin now many, many years later the first work in trying to articulate, characterize the issues that responders were facing and survivors. >> another question. what are the consequences of letting the world trade center health program expire in september of 2015. how would it affect the operation of centers of excellence across the country and the patients who use these facilities and services? >> certainly any of us that receive health care from a

particular health plan, if we are notified that plan no longer exists, it creates great stress in our life. we have to adjust to new providers and other changes. our efforts to help those who may be part of our discontinued program, let's hope that does not happen, would have to receive other providers of care, and it would be our responsibility to make sure they did. the centers of excellence would not operate any more as a coordinated care operation for responders and survivors. >> thank you. now we're aware that special master sheila burnbalm administers the victim compensation fund which is housed at the department of justice. is there coordination between the operations of the victims compensation fund and the world trade center health program? >> yes, sir, there is.

we have a data sharing and medical review agreements with the victims' compensation fund. we regularly meet with the staff. our staff is embedded with their staff to assist in the medical review. the victims' compensation fund has adopted our program requirements for their medical review. to date we have provided information to them on 18,262 of their vcf claimants. we continue to work very closely with the victims' compensation fund. >> how much higher is the federal employees compensation act, feca, compensation rate compared to parts "a" and "b" reimbursements for hospitals? >> the statute -- the zadroga

act sets the reimbursement rate according to the workers' compensation rates of the federal government, the feca rates. medicare rates are lower, but maybe by 10% to 20% lower. so they are -- the feca rates are higher, and our reimbursement rates for providers are higher than medicare. >> dr. howard, i can imagine it is logistical challenge to provide care for the responders and survivors who are scattered all across the country. what can you do to ensure that a physician in another part of the country seeing only a few world trade center patients benefits from the clinical experience of the physicians in the new york metropolitan region who have more experience treating these wtc related health conditions?

>> the nationwide provider network that we have, which is currently seeing about 8,287 individuals, we have total coordination with that provider network. on the one hand, all of those individuals who do monitoring for our survivors and responders that are in the nationwide program are trained, occupationally trained physicians so they are equivalent to the physicians that we have in the centers of excellence in new york and new jersey. we also provide them with additional training. we are working with medscape right now to have online training available for all of our providers. we work with our contractor lhi which has the nationwide provider network and that physician, their medical director sits in all of our

groups and committees and we engage actively with those physicians. so i would say that for our relationship with the national -- the nationwide provider network, those physicians are on par with our physicians at the cce. >> good. thank you very much. my time is expired. chair recognizes the ranking member of the subcommittee mr. green for five minutes. >> dr. howard, prior to the passage of the james zadroga 9/11 health compensation act of 2010, you administered the cdc grant that was for 9/11 survivors and responders. that program is funded through discretionary dollars, and there is always uncertainty about what amount of discretionary funding would be appropriate for the grant program. dr. howard, can you describe how the creation of the world trade center health care program through the zadroga act has improved the ability to ensure

responders and survivors get the quality services they need. >> thank you. i would respond in two ways. one, on behalf of the members, it is very stressful to constantly be told on a year by year basis that your care may go away, your doctor and the institution, the facility that you go to may change. so it created a pervasive sense of stress. mind you, in our population, we have many thousands of individuals who suffer from ptsd and some highly resistant ptsd. and i'm sure that if they were here with me, they would say how stressful year by year funding is to the program. from the administrative perspective, it is very difficult. because we were always up to the last minute thinking should we start preparing for the program not to be funded, and that was certainly something we did not

want to happen, but it requires a long process of preparation so we were never sure about that. >> so the dedicated mandatory funding helps you not only plan better but also the reaction from the patients? >> it is like night and day. when the zadroga act passed, all of us, members and those of us administrating the program breathed a sigh of relief that we had five years. we never had that before. >> the james zadroga 9/11 health compensation reauthorization would permanently extend the program. could you explain how a permanent extension of the program would ensure that responders and survivors have that peace of mind. you talk about the monitoring and treatment they come to rely on will continue to meet their needs. >> well as i say, the assurance of having the same provider, especially for the patients that suffer from very serious mental and physical conditions is a

peace of mind that can only be bought from mandatory funding without an end date. for us in the program it really helps us do long-term strategic planning. it is very hard to do contracts when you can only provide a year or two or five years. but being able to look beyond the five-year horizon is helpful for the efficiency and integrity of the program. >> it seems the patients enjoy a great deal of understanding from the providers and the doctors and the providers in the program. how do you think this affects the patient outcomes? >> without doubt, the providers that i first met in august of 2002, when i became first involved in this program, are the very same providers that i see now in june of 2015. their dedication to this population has been worthy of note.

>> so the doctor/patient relationship is important because of the continuation of the program. >> the trust that our members are fortunate to have cannot be duplicated anywhere else. >> do you think continuing the program is so important to ensuring the same level of knowledge and expertise? >> very definitely. our providers have a wealth of clinical information that other providers would take them years to develop. >> okay. thank you mr. chairman. i yield back my time. >> chair thanks the gentlemen. now recognizing the advice chir confident subcommittee the gentleman from the kentucky, mr. guthrie, five minutes for questions. >> thank you mr. chairman and thank you dr. howard for being here and i spent six years in college in my life in metro new york and one of my favorite things to do back when i was under grad was -- the uso and

spent a lot of type at the uso off times square and there was yuched public servants there and i always enjoyed talking to -- i'm a talker so i would engage with them and what a great service that people pull. and you hit on something, i want going to -- i wasn't going to go this direction but it opened my eyes and i will emphasize and go a little further. and i live in bowling green, kentucky, and we take care of our servants as well, so if there is a fire and someone goes into a firehouse and they get injuried, we have systems in place to -- disability insurance and so forth. and so i think a lot of us that aren't in new york continuously and the surrounding areas like some of my friends here is are the programs already in place. so what you hit on today is the first time i thought of it, i know it is unique in the massness of it, but why is it unique in the terms of other injuries that people might receive that requires its own system other than just the volume? so could you hit the challenges because you've opened my eyes to

some things today, the challenges that you've already kind of said but emphasize why this is completely unique that it needs its own program, why diseases are different than if you're in a normal i don't know if normal is the right word but a more standard situation that firefighters or other people would be in. >> be happy to. and best way to answer that question is by looking at some of the findings that we have gotten from the investment that the act has allowed us to make in research. looking at this population and the conditions. and i'll just mention a few issues. on the mental health issue, we have seen delayed onset of ptsd. now that is not normally seen in other types of situations. that is something that we're seeing in this population. we've also seen a worsening of

ptsd, despite conventional treatments. so that is something that's new in this population. in terms of respiratory disease, we're seeing an onset of obstructive airways disease beyond five years after exposure. we're also seeing bronchial hyper reactivity persist over a decade and that is something new. in terms of asthma we have seen patients in our program who have asthma who have lost full -time employment because of their asthma, more than we've even in the general asthmatic population. so there are a number of findings that we're seeing from a clinical perspective in this population that we would never have learned had we not had the group together. >> if it was just normal workers' comp or other things. and so i want to get to another

thing. you said there was 71,000 people in the program. what is the criteria? did you have to be on site for so many days or did you have to be in the rubble or blocks away or what is the situation? >> the simple answer is the zadroga act is highly specific about the criteria for eligibility in the program and it includes -- let's say for new york city police officers, location, the duration of their exposure, and other factors. so eligibility criteria are pretty well spelled out in the act. >> what about the nonpublic safety personnel who can be in the program? >> right. there are criteria for eligibility for volunteers that came from all over the country to volunteer as responders. similarly in the section of the act that has to do was survivors, there are five levels

of eligibility requirements for survivors. so if someone comes to the program and wants to be a member, the first step is filling out an application in which they -- a lengthy application, unfortunately, i might add, in which all of that information is solicited so we can establish whether or not their experience meets the eligibility requirements of the act. >> and i think some concerns is debated before and i want to emphasize this is that anywhere in terms of people getting the health care they deserve and i remember asking the question, why such a separate and unique program and you've given me some really good things to think about. so i appreciate it very much. so i thank you very much. i appreciate it and i yield back. >> sir thank you. >> the gentleman and recognize the ranking member plume for five minutes of questions. >> dr. howard, the world trade center requires on world trade centers of excellence to provide the monitoring and medical care for the program and they

employ clinicians with deep experience in treating the unique physical and mental health needs of 9/11 responders. and i know you talked about this and i'm following up on what mr. guthrie said. i know that the patients in the new york city met pol and area continue to see general physicians but obtain monitoring and treatment for conditions at these centers and i also understand that if somebody is another part of the country they can go to a network of doctors provided through the program. but some of them also come to the certainties. i know at the new jersey centers people from all over the country will travel because of the expertise that exists. so if you could comment on the treatment benefits of individuals using these centers rather than their personal physicians for their 9/11 related health conditions or even you know traveling when they can see someone who is part of the wt c-net work and they come to the centers. >> yes, i would be happy to. i think it boils down to the

difference in physicians in terms of their expertise, as you said. occupational and environmental physicians who are schooled in that particular subspecialty know how to connect an exposure with a health condition. when i went to medical school, i did not learn that. i learned how to take care of a health condition, i didn't learn to the go back and do an extensive history to try and figure out what was your exposure and was that related to this health condition that i see. that is a specialty of occupational and environmental medicine where we try to correlate the exposure and the health condition. so physicians that we use both in the cce's that have been involved since 2001 and in the nationwide provider network have that capability. physicians that don't have that capability would not be able to listen to the patients' symptoms and be able to say yes, your

exposure, i'm going to make a determination that your exposure caused that health condition or contributed to that health condition or aggravated that health condition. >> i'm trying to speed up. have there been problems with misdiagnose or improper treatment of 9/11 health conditions when individuals have relied on their personal physicians? >> not that i'm aware of. within the program, of course, we have quality assurance, where we look at all of the care that is given. >> okay. and can you just discuss briefly how the clinical centers of excellence coordinated the care delivered to responders and survivors at the centers with care delivered by the personal medical providers outside the centers, briefly? >> sure. as many of you know, the world trade center health program is a hybrid program. it is not your normal health plan where you go in and everything that you may complain about relative to your body, a physician takes care of.

we have limited number of conditions. so many conditions we don't cover so you have to see an additional physician, your personal physician. that coordination is done in the cce's so if they see a condition that we do not cover, then appropriate referral is made. >> okay. now let me just -- i'm going to try to summarize the last question. my concern obviously is that i don't want the program terminated before we have an opportunity to reauthorize it and that is why we are having this hearing and trying to move quickly. but in preparation, if reauthorization legislation is not signed into law by september of next year, the program is terminated and in preparation for termination or possible termination, i understand that hhs has certain notice requirements you have to follow. can you just tell us what you have to do, obviously this isn't what we want to happen but i want to stress there is always that danger. >> well, it would be a nightmare for me personally and it would be a nightmare for our members.

it would be a nightmare for our cce physicians. you cannot abandon a patient ever as a care provider. so we must ensure that that patient is taken care of somewhere. and finding a place for each of our 71,942 members would be a gargantuan task. >> and the notice requirements, when does that start? >> we have to inform our patients ahead of time that this may happen, even though we may not be sure that it's happening and certainly when it happens and all of the efforts that we can make to help them support their efforts in finding additional help. >> when does that process begin? do you have a notice requirement? >> the 90 day time limit is sort of an unwritten notice requirement now. it can vary state by state because these are often state laws. but we have to go back and look -- since we have members from every state, we would have

to look at every state's abandonment requirements. >> all right. thank you very much. >> now recognize the gentleman from kentucky, mr. whitfield, five minutes for questions. >> thank you very much, and dr. howard, thank you for being with us this morning. i want to just follow up briefly. when we think about health care systems and frequently people all work with some company that provides health care or medicare, you've got to be over a certain age, medicaid, income below, trio or tricare, so here the common element is people from around the country whether emergency responders or volunteers came to respond to this new jersey new york, this disaster on 9/11. and you touched on the criteria and i think you indicated there are 71000 plus members enrolled in this program.

and is it still eligible -- if i'm someone that worked there during that time, would i still be able to enroll today if i'm not enrolled right now? >> yes, sir, you would be. and we hope that anyone listening not enrolled in our program who may be eligible will call our eligibility line and sign up for our program. >> okay. and i won't get into the details, but the criteria for eligibility, i'm assuming you had to have been there x days. and is that correct? >> right. there are very detailed eligibility requirements spelled out in the act itself. >> and does your office make the decision on whether or not a person is eligible or not? >> yes, sir. >> now of the patients that you are caring for right now, what percent of them would you say or maybe you don't have this information, had an insurance program already, they were already covered?

>> well, first of all, even if you had health insurance, as a responder, you would not be able to use that insurance because health insurance does not cover work-related issues. for instance if you've ever gone in for an mri or a ct scan, at the bottom of that form, it will say is this it the result of an auto accident or work accident? if it is they will not pay for it. they'll refer you to other insurers.nce could be an issue and we recoup as much as we can from the health insurer. >> what percent would be covered under workers compensation program? >> theoretically work-related injuries and illnesses would all be covered. but there are great difficulties for responders in accessing worker compensation benefits

bous oftentimes their conditions can, not it the or conditions where on the event someone had an acute injury and it happened within a short period of time. but some of our diseases in our program, the on set is years later and a lot of statutes draw a line and say no that is beyond our statute of limitations. we will not cover something that started five years later. so many of our members are in that situation. >> so would it be unusual that workers comp may pick up part of it and then this program would pick up sort of playing a supplemental role or -- >> it is not unusual. many of our members have had worker compensation benefits given and we're in the process of recouping from workers compensation. but it is not the majority or even near the majority of our members. >> some people have indicated early on, and i remember when there was first a discussion about this, this was a unique

program but i know there is health programs in effect for employees at savannah river, paducah, oakridge and so forth, which is kind of similar to this, because those workers were exposed to certain elements, .of them were not even aware of, and they came down with a lot of different cancers. and so those programs are similar to this program, would you say? >> yes, sir. and in fact, we administer the energy employees occupational illness compensation program together with the department of labor and the department of energy. it is a program that bears a lot of similarities to our program at the world trade center. >> and so if you worked at the world trade center and you're covered and you have one of say 12 or 14 illnesses that you all have set out, is there a presumption that since you were

there and exposed, that you would be covered under this program? >> not a presumption. a physician, not in the -- in the administration of the program, but in our centers of excellence, would examine you, take your history, and make the connection between the exposure history that you give that physician, and that health condition. and they, and they alone, say i think the two the are connected. >> well, thank you very much for the great job you you do at niosh. >> chair thanks the gentleman. recognizes the gentleman from oregon, mr. schrader, five minutes for questions. >> my questions have been answered mr. chairman, thank you. >> then the chair recognizes gentle lady miss caster, five minutes for questions. >> i want to thank you, mr. chairman, for calling this hearing, and i would like to thank all of the first

responders and survivors and the medical professionals who take care of them for traveling hearing to capitol hill to encourage the congress to provide some continuity and certainty in the world trade center het program. i'd like to thank my colleagues especially from knowledges and new york congressman pallone and congressman lance. you all have been champions on this committee for this endeavor along with congresswoman clark and congresswoman maloney. i see congresswoman king was still here and the entire new york delegation especially. i strongly support the james zadroga 9/11 health and compensation reauthorization act because it will provide that important certainty and continuity of care from this point forward. and it is interesting to see the list and understand there are

first responders and survivors from the world trade center terrorist attacks au across america now. and florida comes in right behind new york and new jersey. so it will be very important and i think that the folks that i represent back home will be strongly in support of taking care of their neighbors who were there on september 11th and the weeks and months and years afterwards. it is vital that we continue this specialized care for all of our neighbors and the brave folks who were there on september 11th. so dr. howard, thank you for being here today. one of the important parts of the world trade center zadroga health care initiative is the funding provided for research into 9/11 related health conditions. between fiscal year 2011 and

2014 the program funded 35 projects to investigate questions about 9/11 related to physical, and mental health conditions. could you provide examples of the research funded by the zadroga act? >> be happy to. we're very grateful for the original drafters of the legislation to provide money for research into the health conditions that our members face. and as i mentioned before, we've already learned quite a bit from that research. and i'd like to highlight just one aspect of it. in addition to mental health and respiratory and cardiovascular and our cancer research did research in auto ip mun diseases and others, is the research that we've done on individuals who were children at the time of the 2001 attacks. there were a number of -- of elementary schools and

stuyvesant wrn high schools that were immediately impacted. and we have a number of those projects going on now. about seven that are funded. and we're learning the effects on developmental issues in the children's population. to date, we've funded $88.5 million worth of research. and we have a significant body of research that is published in peer reviewed journals the world trade center registry alone has published about 60 papers and our various clinical researchers at our clinical centers have published the other papers. our pivotal papers in cancer, autoimmune diseases, asthma, and other respiratory disorders have allowed us to provide better care, more focused care for our members. are these the results of the research, are they disseminated

in an organized way to the providers and the families so that they have access to all of that information? >> we have membership mus letters that highlights various findings from research so they know. and all of the papers are published on the world trade center website and these are all peer reviewed publications so they appear in the science journals and i'm happy to say that the new york media picks up on those papers and reports them probably more effectively and more widely than we can on our website. >> so if the james zadroga act is not reauthorized, will the research efforts come to an end and explain to me why that would be harmful. >> they would cease altogether and we would lose one of i think most important of the program to our society, looking at the long-term health effects from 9/11.

>> okay. and you testified earlier that health conditions often manifest themselves years later. the zadroga act provided funding for out reach efforts to individuals who may be eligible. we're now several years into the existence of the program and you have successfully enrolled more than 71,000 responders and survivors. it seems to me that in addition to outreach the continuity of care and retention of members will be important to protecting the het moving forward. that's why the reauthorization act here clarifies that funding may be used for continuity of care and retention. give me your opinion on why efforts on continuity of care and retention of members is important moving forward. >> as you say, our program over all since its inception of july of 2011 with the zadroga act has grown about 1% overall in membership. and we attribute that to all the

wonderful contractors that we have who have done recruitment. but the other side of that is once you recruit a patient into our program, we want them to remain in our program. and every health plan loses members because we do not go and do outreach to retain them. so that's -- on balance now after our first five years, we hope to emphasize in what we hope is our second phase that retention of the patient population is as important as theirology recruitment. >> and how do you propose to do that for first responders and survivors outside of the new york-new jersey area, say, in the state of florida? >> first of all, we do things as a team. we sit down with our representatives from survivors and responders. we have a responder steering committee which is very active meets every month and we have a survivor steering committee that's very active and meets every month. all of our ideas, suggestions,

we go to them and say how are we going to do this and together as a group we figure out how to do it. there are many mo dates that we could use and oftentimes we're told by our members what is the most effective. >> thank you very much. >> now recognizes the gentleman from texas, dr. burgess, five minutes for questions. >> thank you mr. chairman. thank you for having the hearing, dr. howard, thank you very much for being here today and to all the witnesses on the second panel, hank you for your participation and the people who are here in testament to the work that you've done. i also feel obligated to recognize the work of one of our colleagues, a former member vit tote facella who was on this committee with us and responsible for my early interest in this shortly after i arrived in congress in 2003. and it was because of that interest that i did become an early supporter of representative king's work on

this. and in fact, i was the one who ran the bill on the floor in the waning days of the 111th congress in the late lame duck session in december when the by finally did pass on the floor of the house. but dr. howard, i'm interested in -- you said in your testimony that you provided for us today that certain types of cancer were added to the list of health conditions covered under this act. could you share with us what those cancers what types of cancers those were, are? currently covered in the program are every type of cancer is the short way to approach this every type of cancer except uterine cancer. >> but are there those more -- if you were to pick the top three malignancies, what would those be? >> i think if you looked at our 4,000 or so cases right now,

probably the top ones would be thyroid cancer. there are five common cancers that americans get. skin being the one. that is our top cancer. there is breast cancer. that is also a top cancer for us. there is colon cancer, which is a top cancer for us. thyroid cancer is another cancer for us. but we've seen a lot of very common cancers like that and we've also seen some very rare type cancers and oftentimes from ep dem logical basis the appearance of rare cancers is extremely helpful in terms of doing research on a population to figure out what their exposures are causing rare cancers. >> sure. that speaks then to also the value of having people that have expertise in treating the types of injuries encountered because an uncommon cancer can be a

difficult diagnosis to which to arrive. >> exactly. and if this cohort were distributed, we would not be able to count those. it would be very hard to find all of those rare cancers if the patients were not seen in our clinical centers and rather they were seeing their own personal physicians throughout the united states. it would be very difficult to do that. >> so it provides a focus that otherwise would not be available. and just as far as a brief comment if you will on the observe versus the expected cancer rates and the population that you're following, is this number of i guess i calculate it to be 6% based on the number of patients you're following and the cancers you reported how does that stack up to the general population? >> well, that comparison i'm afraid we can't do at this time. that would be something that we would have to wait and see what

our researchers could come up with in giving us that kind of number. we're now looking at and the fire department of new york city is doing some research using as a a reverent population to compare our world trade center firefighters to, another cohort that was assembled by the institute of firefighters not involved in world trade center, so we hoped that line of research could answer your question some day. >> to give a better control and age match for people in similar occupations. >> yes, sir. >> just switching gears a little bit and you mentioned also in your testimony that you're trying to aid not just the individual members but help grow the body of evidence and the body of information so that you can help in other situations. are you going to be able to provide feedback to municipalities and boroughs as to the type of workers compensation coverage that may

be provided to members of the fire fighting community or the type of health insurance that is provided, some of the short comings you mentioned were within the workers compensation system. are there lessons you've learned that can be extrapolated to other communities? >> certainly. and i think new york state itself the legislation and the governor have already responded to this issue significantly by providing a mechanism by which responders -- survivors can sign up to a program. they don't have to actually make a claim but they can register and then if they should develop a condition later on, that their claim would not be beyond the statute of limitations. so other states have also looked at that and we hope that people will learn, especially from the long-duration disasters. >> thank you mr. chairman, i yield back.

>> the chair thanks the gentlemen. now recognize the gentle lady from illinois, miss shaskowski for five minutes. >> change you, mr. chairman. i too would like to thank all of the first responders, the survivors, those who treat them, for coming here today, for the first responders and the survivors, i'm sure in addition to some health conditions, that may be more visible, that the trauma of the incident and the loss of friends, co-workers, family, is something that lingers on forever, really. in illinois, dr. howard, there are 13 first responders and between one and nine survivors the way the data is kept it's between one and nine enrolled in the world trade center health program. so clearly there is no concentration of those individuals in any kind of program of nationwide providers.

so i imagine there is physicians that have one or two, et cetera. so how do you maintain that the cohesiveness of that network? >> i think that is a very good question. and i think there is a couple of ways that we do that. first of all, our nationwide provider network is headed by a very capable physician who is a part of our new york-based centers, new york and new jersey-based centers of clinical excellence. so he participates in all of our meetings and is a great educator and teacher for the cadre of physicians that do monitoring and evaluation of that population, as you point out, a physician may have only one or two. those physicians themselves are occupationally trained so they have the same kind of training to be able to connect exposure and health conditions as

similarly situated physicians at our clinical centers. as i mentioned, we're also trying to, we've been very pleased that med scape is helping us put together constant training, so to speak. 24/7, you can go to their website and get information about the latest findings from the program that may influence your practice. so even though we have a distributive network and those in the nationwide provider network may have one or two patients they're seeing we want them to be as similarly situated none wise as the rest of our physicians. >> so my understanding on the data is that there are a total of 71,000 people or approximately that are in the program, and then it says in a fact sheet that i have that more than 30,000 responders and survivors have at least 1 world trade center-related health condition. so there are some people in the program -- i gather, more than

half that are simply -- but not simply, but being monitored, is that the difference in number? >> yes. we offer monitoring and treatment. so if you are in the monitoring program and you do not have a health condition that is included for coverage in our program, then you come on a periodic basis for monitoring, so you are not in treatment. there is no condition that the word trade center health center physician has connected to your exposure. so they are continuously monitoring. >> but the monitoring is done within the network and there is not an additional cost to that individual for the monitoring? >> no. our members bear no costs. >> so the population that you serve includes some number of families of the -- or spouses of firefighters. some are in that program.

survivors that may be workers in the area, residents, students, day care, participants, et cetera. i'm wondering what the break down is between first responders and then survivors. >> in terms of enrolled members in our program? so currently, total enrollment of the population as you say is 71,942. general responders, which would be police, construction workers, volunteers that came from all over -- >> firefighters -- >> -- the united states is about 3,953. our fire department members are 16,569 which leaved 8,133 survivors in that 71,000. >> does anybody leave the program? aside from the issue of

reenrollment, so do they have to reenroll every year? >> i'm sorry. >> do they have to reenroll? >> no. you are enrolled once in our program. >> does anybody leave? >> i hope not. but i do not know that for a fact. we have members who have passed away. >> certainly. >> but leaving, they may go to -- as has been said, by representative palone, they may go to their private physician to obtain health care for other nonrelated conditions. >> thank you very much. >> chair thanks the gentle lady. now recognizes the gentleman from new jersey, mr. lance, five minutes for questions. >> thank you, mr. chairman. i don't have any questions. but i want to thank you for what you're doing, dr. howard. i want to thank congressman palone who has worked on this issue over the course of the last more than a decade and all of the members of the congress

who recognize the importance of reauthorization of this legislation. this is a bittersweet hearing for me. new jersey lost more than 700 residents. my son was playing freshman high school football and he had a teammate whose father didn't come home. i lost a princeton classmate in the south tower and my story is similar to the stories of many. i think the best speech that the younger president bush ever delivered was on september 14th at the national cathedral where he said that this word god created is of moral design. grief and hatred and tragedy are only for a time. goodness and remembrance and love have no end and he

concluded by paraphrasing st. paul to the romans, that no evil can separate us from god's love. what you have done is based on goodness, remembrance and love and that is certainly true of the first responders. and i thank all of the first responders and i'm sure this legislation will pass unanimously here, in the full committee and on the floor of the house. mr. chairman, i yield back the balance of my time. >> chair thanks the gentleman. now recognize the gentleman from new york, mr. engel, five minutes for questions. >> thank you very much, mr. chairman. and i too, none of us that represent new york or new jersey, and the surrounding area that wasn't deeply affected. there are 1851 people in my district who are program beneficiaries of all you do, dr. howard, so we're very appreciative of it. you've answered some of my questions but i want to try to bring out certain other things.

many of us in the aftermath, mr. lance just mentioned the friday after the tuesday of the attacks an many of us in the delegation went to the site of the attacks. it was surreal. you just scratched your head and you couldn't believe you were really -- it was like a nightmare. you couldn't believe you were really living it and then you kind of realized every few seconds this is real. and so we walked around, other people walked around, we really weren't wearing the masks. they did give us masks but didn't really make it seem as if it was that important. so i bet a lot more people got exposure. i mean i went back several times. i don't have any ill-effects. thank god, but people are now starting to get effects do we have trouble tracing it backing? is it difficult for people to

prove so many years later that their illnesses are a result of exposure they got at the world trade center site? >> it is difficult. it's difficult for any of us to recall exact details of what we did a month ago, a year ago, let alone this many years ago. for new members coming in our program, a lot of the questions that we ask about their exposure is, they're very difficult to answer. recall is imperfect in all of us. but we take that into consideration in terms of the questions we asked them and the answers they give us. >> first of all, doctor, thank you for the great work you do. really great work. it makes me proud to have been an original co-sponsor of this legislation. i think in all the years in congress, i've never seen our delegations more united on one thing, particularly the new york delegation. since the program has been continuing, and, obviously, when

things continue, you see what works, what doesn't work, you make adjustments, what would you change in the program? what have been some of the things that you have found difficulty with and perhaps we should consider modifying or changing to make it more efficient? >> well, i don't think that we've found anything in the act that has been a showstopper for us in administering the program. we look at all of the items in the act as helping us. and we consider the act to be a we written document that's given us a road map. and as for so many years, for over a decade, we will no authorizing language. we made it up as we went along together with our clinical centers of excellence. we're extremely happy to have this authorizing outline for us. >> how much flexibility exists

with regard to the world trade center health program's eligibility requirements? for example, if someone meets nine out of ten benchmarks, but desperately in need of care, can exceptions be made to ensure that care gets to those who need it? how does that work? >> we look at every case on case by case basis. as i said, recall is not perfect this many years later, and we take that into consideration. we only decide that somebody's not eligible when we're absolutely certain that they do not fit any of the stated criteria in the act. if we err at all it's on the side of including someone in the program. >> in your written testimony you noted the work that's been done through the world trade health program, work has been done to understand the impact that 9/11 had on children. and i understand that the program's funded research

projects to specifically examine the effects of 9/11 on the physical and mental health of children and adolescents. can you talk a little bit about that? >> first of all, we're vets privileged to have a number of researchers in new york who are interested in this area of pediatric research for 9/11. as i say we have seven projects that are funded in this area. they have not been completed as yet, so we're looking forward to those findings. i can't report today about what those studies are showing, but it's important that we have them, and they continue, and we're very privileged to have a very -- a couple of very good researchers working on them. >> thank you, doctor, and, again, thank you for all you do, and we're really very, very grateful to you. it affects those of us in the new york area every single day, and our constituents are grateful. thank you. >> chair thanks the gentleman. i understand you don't have questions.

the chair recognizes ms. brooks from indiana. five minutes for questions. >> thank you, mr. chairman. dr. howard, i'm a former deputy mayor of indianapolis in the late 1990s, and we hosted the world police and fire games in the summer of 2001 before the 9/11 attack and there were many new york new jersey firefighters and police officers who perished in the attack. new york firefighters who perished that had participated in those games but we also had a group called task force one that traveled from indiana to the world trade center, and i've since learned because of this hearing that we have 53 people in the state who responded. i have 12 in my particular district, and i want to pay particular tribute as other colleagues have done, not only to all of those from new york

and new jersey, but people like individuals from task force one whose engineers and technical experts and their certainly dogs traveled immediately that day and copied to operate around the clock with all of their brothers and sisters in new york. there was a story several years ago about an indianapolis fireman and a member of task force one, charlie gleesing who was deployed and he said in that tv story, he said and i quote he got a lit bit of that world trade center cough from that mix of the fumes. but he said that he would gladly answer the call again. and that understand the risk, but we have to take care of the men and women that are going and that continue day in and day out to risk their lives for fellow citizens. and i want to thank you and all of the men and women who are here today for their service and

all the men and women around the country who did answer that call. i'd like to ask you what you lose sleep about with respect to this program? what are your greatest challenges? you answered incredibly well, so many questions posed to you, but what would you say are the greatest challenges facing the program that we must reauthorize? how do you plan to respond to those perhaps or to those challenges? >> i think the biggest thing that worries me is that i would have to spend any amount of time, waste my time closing the program. as opposed to growing the program. >> and the manner in which you plan to grow the program, how do you plan to do that? >> i think, you know, one of the issues that we faced in the program, and i think i can speak for all of our clinical centers of excellence directors and our

national nationwide provider network is when the bill passed, the president signed it on january 3rd, 2011, we had to be up and running july 2011. it was a very short implementation time. by a lot of work, by a lot of people, we were able to open our doors on july 1st, 2011. but i think what we've done over the last five years and what we hope to continue to do is quality improvement of the services we offer, our pharmacy benefit plan, for instance, and other support for our members we want to receive their input so that we can continue to improve the program. >> thank you, thank you for your service, i yield back. >> chair thanks the gentle lady. now recognize the gentleman from new york mr. collins, five minutes for questions.

>> thank you, mr. chairman, and i, too, want to recognize all our first responders here. i think any time you come as you have, it just helps members of congress in what we know will be a bipartisan support as previously stated to unanimously pass this reauthorization. but first of all, mr. chairman, i would like unanimous consent to enter into the record a statement from representative dan donovan who represents staten island and a portion of brooklyn. >> without objection, so ordered. >> and i'd also like to recognize representative peter king that's with me today and thank mr. -- or dr. howard for all you've done. you have, pretty much, i think, answered most of our questions, i represent 105 towns of western new york in the buffalo into the finger lakes area, and i believe probably most if not all of our volunteer fire departments and we're mostly volunteer, we have one paid fire department in my district sent individuals down to ground zero. that's what firefighters do and

first responders. it's a community, a brotherhood and i'm just happy to have learned more today about how those individuals are more than likely in your program being monitored, and i think again in a bipartisan way we are with you and you are doing great work and i don't believe you are going to have to lose sleep about shutting this program down. with that, mr. chairman, i would like to yield the remainder of my time to representative king fed have any comments they'd like to add. >> that's appropriate. >> chair recognizes the gentleman. >> thank you, mr. chairman and i do appreciate the opportunity for you allowing me to sit in and take part in the hearing. i thank the gentleman from new york for yielding time. i would like to say there's no more important bill to be passed during the time that i've been in congress than this 9/11 act. i added 150 fatalities from my district and more than that i see every day it to this day,

rare lung diseases respiratory illnesses, blood cancers so this is something that's absolutely necessary to continue. and i know that people may find that this might be wrong or that might be wrong, but the packet is that this is as eb as any program i've seen since i've been in congress. and it provides a need, which is a lasting need, absolutely essential to go forward, and i thank all the men and women here today, first ponders, nypd, construction contractors, i saw one before, certainly people who are residents of the area and really everyone who answered the call that day, they did what they had to do, and those hose are suffering these inesses, people in the prime of life who have, again, lost their jobs, have these debilitating illnesses that changed their lives all because they did what had to be done. again, i thank the chairman for holding this hearing. i thank the committee for taking the issue up. i thank all of you for being here today and i certainly thank mr. collins for his time and i

yield back to you, mr. collins. thank you. >> thank you. i recognize the gentle lady from north carolina. >> thank you, mr. chairman. thank you, dr. howard, for being with us, and i, too, want to thank all of the first responders who are here today. you know, a very emotional sub committee hearing, so i will try hard to stick to the information and get into some of these questions. along the lines of where we are today, and i know that you have already stated, dr. howard, that as the number of affected first responders have come forward, those who have been determined to have cancer, how many are in existence right now? how many are with us? what number do you have of potentially affected patients who have a diagnosis of cancer? >> well, right now, we have

about 3400 cases of cancer, individual cases of cancer. some of those cases may represent an individual that may have more than one cancer, but generally speaking, that is the number of members that we have who we have certified with cancer. >> now, as far as the certification process, i'm just curious as to how you determine approval or denial, and, you know, do you have numbers that play out as far as the possibility of being approved or denied? >> sure. let me just briefly explain the process. the physician who is seeing the patient makes the connection between their exposure and the health condition, in this case, cancer. they can say it's caused by or contributed to or aggravated by their exposure. that's the determination made by the physician. >> i see.

>> we don't make it in the program. that's an independent view that the physician has, then they submit it to us, and we make sure that all of the supporting information is there and then we certify it. if the supporting information is not there, we have a question, we go back and forth until we're at -- we're all absolutely sure, including the determining physician and us that this is a case to be certified. certification then means that you get your cancer covered for health care. >> uh-huh. having the concentration on cancer leads me to the next question which is do you anticipate adding other possible diseases outside of the cancer realm? >> well, we've received to date seven petitions for requests adding conditions. two of those were cancer. the original cancer petition that chairman pits referred to, 001, and then soon after that, we had a petition with regard to prostate cancer, and then five others.

with the five others, we did not find sufficient scientific evidence to support their addition. we get quite a few requests for adding conditions. it's hard to estimate what conditions we would add in the future. we evaluate each of those requests on their scientific basis. >> and then in regard to autoimmune diseases i understand that you have determined that those would not be identified or added. >> right. >> can you expand on that? >> right. we received a petition, our last petition, to add a large number of autoimmune diseases to our statutory list. we reviewed all the information including the very excellent study that had had recently stipulated that petition by fdny, and we found that it was insufficient at this time.

it doesn't mean that -- and that this is -- this is why we're emphasized so much the importance of research funding in this program, is the additional work that is going on by other cces and our world trade center health registry to look into the issue. so it doesn't mean that forever and ever it will not be added. but at this type, we're not adding it. >> well, thank you, dr. howard, i do appreciate all of the information that you've helped us with, and i am glad to know that this is considered to be an ongoing process into the future because we don't know what the future holds for this and again god bless all the first responders who are here and your families. thank you so much, i yield back. >> the chair thanks the gentle lady, and now that all the members of the subcommittee have had an opportunity to ask questions, we can ask for consent, i ask that members of the full committee, ms. clark, begin five minutes for

questioning. the chair recognizes ms. clark. >> thank you very much, mr. chairman. we've been joined here by congressman gerald nadler of new york original sponsor of the zedroga act, and i wanted to yield time to him. >> thank you for yielding, and let me thank the chairman for holding the hearing and the members. i simply want to say that as someone who is -- along with mr. king and ms. maloney, one of the three original sponsors of the bill, we struggled for years and years to pass it. i'm glad to -- and history has proven the necessity of this bill, i want to thank dr. howard for his wonderful service. i'm glad the chairman called this hearing, and that judging from the comments at the hearing, there seems to be a lot of bipartisan support to extend the bill. we know the necessity of that, so i -- i just want to urge that that be done, and that -- and i thank the chairman of the committee again. the extension of the bill is

essential because the diseases won't go away. this is both for the responders and survivors in the community, and so i urge the extension of the bill. i thank, ms. clark for yielding, and i yield back to her. >> thank you dr. howard, just following up on a couple of the questions that miss elmers asked about the conditions can for the record what is the process by which you can add new conditions to the program? >> well, first of all, the administrate irhas the ability to add a condition on his or her own motion. the other very common route that we've seen so far is the public can petition the administrator to add a condition. as i said, we received seven petitions so far. two of those we have added the conditions, the first one being cancer second one being a

specific type of cancer, prostate cancer. the other five we have found insufficient evidence for. >> i understand that the statute outlines specific timing requirements for you to respond to those petitions. could you describe that for us? >> right. the administrator has 60 days to respond to a petition unless the administrator defers to our scientific and technical advisory committee, and then the time frame is 180 days. for instance in terms of the first petition on cancer we referred that to our science and technical advisory committee. they had 180 days to make their decision. >> do you have any concerns with this statutory timeframes in which you would have to respond to such petition? >> one of the things that the gao report pointed out in their review of our cancer petition and -- or addition of cancer is there was no external peer review of our science that we used to justify the addition of

cancer. we believe in peer review very, very much, and we want to do external peer review, but the time frame of 60 days, given the enormity of the task of adding all those numbers of cancers, that was a very short period of type. so we were unabe to engage in external peer review. >> very well. can you briefly tell us about the registry? it's our understanding we have -- it was created to follow individuals who were exposed to environmental toxins related to the world trade center terrorist attack. tell us a bit more about the registry and why it is an important tool for studying the wtc-related health effects. >> the health registry, operated by the new york city department of public health and mental hygiene is a vital participant in the research aspects of the program. they started very soon after

9/11. they have interestingly enough about 71,000 members also, and i might add i was told by the director last week that they have reg rants in the registry from every congressional district, all 435. they have produced almost 60 papers in this area. they follow the same people over periods of time. so every so many years, they study them to figure out what their experience is. so their research is vital to this program. >> do we have a sense of any of their findings so far? >> oh, all of their findings are not only on their website, but also on ours, and i think some of the things that we've learned already, the issues about asthma, mental health, persistent ptsd, et cetera, have

come largely from the world trade center health registry study. >> so you think it's important to continue the work? >> absolutely vital. >> thank you. i thank the ranking member. >> the chair thanks the gentle lady.member. >> chair thanks the gentle lady. that concludes the questions of members here present. i'm sure, doctor we will have follow-up questions from members. we'll send those to you in writing. we ask you please respondent promptly. >> thank you, chairman. >> that concludes our first panel. we'll take a three-minute recess as the staff sets up the witness table for the next panel. committee stands in recess. >> when congress is in session, c-span3 brings you more of the best access to congress with live coverage of hearings news conferences and key public affairs events. and every weekend it's american history tv traveling to historic sites, discussions with authors

and historians and eyewitness accounts of events that defined the nation. c-span3, coverage of congress and american history tv. >> all right. the time of recess having expired we will reconvene. i'll ask the guests to please take their seats. ladies and gentlemen, ladies and gentlemen, please take your seats. the committee will reconvene. i ask the guests to please take their seats and i'll introduce the second panel. we have three witnesses on the second panel. i'll introduce them in the order which they will present

testimony. first we have dr. iris udasin, medical director environmental and occupational health sciences institute, robert wood johnson pled medical school. welcome, dr. udasin. second we have mr. david howie, retired police officer new york city police department. and finally we have miss barbara burnett, former detective new york city police department. thank you very much for your patience, for coming, for your testimony testimony. your written testimony will be made a part of the record. you will each be given five minutes to summarize. there are a series of lights on the table. you'll see green first, then yellow. when red appears we ask you please conclude your testimony. so at this time, dr. udasin, you're recognized for five minutes. summarize your testimony.

>> my name is iris udasin, and as i serve as rutgers clinical center of excellence in new jersey, we are one of six clinics in the new york/new jersey area. i'm a physician who is board certified in internal and occupational medicine and am a professor at rutgers and a member of the national toxicology panel an expert panel that advises the national institute of environmental health sciences concerning the relationship between exposure to toxic chemicals and health. i want to thank the committee for giving me the opportunityied to to testify considering the importance of our clinical centers and for giving the opportunity to provide the best medical care to those brave spopders who have suffered from multiple chronic and often

disabling medical illnesses includeing asthma, signnusitis. we began treating patients with federal funding starting in 2007. in addition to the treatment of the aforementioned conditions over the past three years we have been able to use our funding under the act to optimize cancer care. this is critical since as early as 2008 our responders were already showing a cancer rate that was 15% higher than people their age who were not at the disaster site. this rate is only increasing and our patients are much younger than usual cancer patients and are nonsmokers. they were highly exposed to environmental toxins as well as severe mental health trauma from what they witnessed as ground zero. from seeing people jumping off tall buildings to their death or finding charred remains.

has allowed us to provide kwaults care by centering all their care in a convenient location with staff members sensitive to their needs coordinating treatment from start to finish. the combination of program wide knowledge gained over 12 years of care delivery in addition to my personal knowledge in new jersey has allowed us to understand this cohort of patients using medical and pharmaceutical resources wisely to accomplish the following objectives, which i will illustrate with specific patient examples. coordination of care for complex cases. diagnosis and treatment of patients considering both physical and mental health aspects of disease. use of state-of-the-art diagnostic techniques for early diagnosis and treatment, use of knowledge gained in our treatment of patients to allow for early intervention enabling our skilled patients to stay at work. i 578 r am proud to share this panel with david howley, a

retired police officer who performed many months of search and rescue work at the site. he presented with swelling in his neck in 2006 which was eventually diagnosed as an aggressive met static cancer of the throat. this is an unusual and rare cancer in healthy nonsmoking americans. however, in my center we've seen eight other patients with this cancer in new jersey alone. david's treatment has required a team of doctors including myself as primary care the general oncologist, the radiation oncologist, the general surgeons, the ear, nose and throat surgeons. because of the extremely difficult form of cancer, it's difficult to treat but he's tumor free since 2014. i want to tell you about a retired detective with severe shortness of breath, chest discomfort, fatigue and inability to perform duties as a

police officer. present on the 9/11 site on the day of disaster, being reported in the dust cloud and witnessed people jumping from buildings. he was treated by his personal physician for five medications for respiratory issues, but no other conditions. his evaluation at our center confirmed the presence of asthma but we were also able to diagnose gastric reflux sleep apnea, post-traumatic stress disorder and panic attacks. this patient was given treatment for those conditions and received therapy for ptsd and panic disorder. the patient was able to recognize his panic attacks were causing him to use increased amounts of asthma medication and he learned to control his attacks. at his most recent examination he no longer needs mental health medications and is enjoying his retirement. the third patient i want to speak about works as a

consultant to prevent tax fraud. an abnormality was noted on his cat scan, his chest x-ray, and he was referred for a cat scan. a small nodule was noted in november of 2014 which grew larger in january. this was evaluated by a radiologist who was an expert in interpreting lung cat scans. she was concerned about the suspicious nature of the nodule and its growth since the original scan. this patient was referred to our university surgeon who removed a stage one lung cancer which does not need chemotherapy or radiation. and i want to say this patient is back at work, he's overseas looking for people who have cheated the government paying taxes. finally, rutgers university and nyu have combined finding markers with sleep apnea associated with environmental exposure. this expertise has allowed for early diagnosis and treatment of

obstructive sleep apnea enabling us to get people to work safely. my fourth patient is a pilot for a law enforcement agency with a history of gerd and sinusitis. thanks to early diagnosis this patient has been successfully treated for his conditions and he is fully qualified under federal standards to skillfully operate his aircraft. he asked how he could thank me for his treatment. and i said that he should continue catching terrorists. in summary all of our patients are honored and treated by skilled clinicians. we believe we are continuing to acquire the knowledge to provide early diagnosis and treatment of emergency responders exposed to psycho social stressors. in treating our patients as well as preparation for providing the best possible medical care for any emergency responders who were exposed to a multitude of

unpredictable exposures. thanks for your time. >> thanks to the gentle lady. chair now recognizes mr. howley, five minutes for your summary. >> thank you, sir. first thing i'd like to do is thank you for having this hearing. it's obviously very important by the amount of people that are here today. and it's both an honor and a privilege to be here and address you. there's a lot of things i'd like to say about this, but i think the most important is to answer a question that you all basically posed to dr. howard, and that is what happens if. and dr. howard was wonderful if his answers, but i think i'm going to be a little more blunt about it. people are going to die. the men and women that are sick, that are being taken care of

now, i've only been cancer free a little over a year. i could easily -- and if it wasn't for this lady right here, i wouldn't be here at all. so to end this program, people are going to die. it's a fact. it's unquestionable. and that's what's going to happen. i was born and raised in mr. palone's district. lived in his district once i retired and i moved a few years ago and now i live in congressman lanch's district. i have both sides of dio covered here. this is not something that should have any political fighting. this should be an absolute bipartisan 435-0 type bill. this is a ground ball no-brainer as far as i'm concerned. and as the other -- and the last point i'd like to make because i'm going to try to keep this

brief is i wouldn't be here sitting here if it wasn't for the doctors and dr. udasin and her other colleagues' knowledge, skills, ability, research. they have become the absolute experts in what is ailing us, and not just me be all the other people that are part of this program. you can't go to your regular doctor. they don't have the knowledge. they just don't. they're not bad doctors, there's nothing wrong with it. but what has happened to us because of the conditions that we were in has become very specific. i didn't have a normal cancer. and there's a lot of other people that don't have normal cancer or normal blood diseases.

and because of their absolute dedication, they have come up with plans and outlines that they can treat and get us through these difficult diseases. and that is the most important thing is that we can have a quality of life to go forward. and i'm going to leave it at that. i'll be happy to answer any of your questions. >> chair thanks the gentlemen and now recognize ms. burnett. five minutes for your opening statement. >> thank you. subcommittee, ranking member green and members of the subcommittee on help for inviting me to appear before you today. i live in bay side new york, i'm

52 years old a wife, mother and grandmother. with me here today are my husband and my son. i am a proud former new york city police detective. i retired from the department after 18 and a half years of service. my career came to an end because of an illness i developed from the time i served at the world trade center site. i served there for more than three weeks about 23 days in total. the morning of september 11th 2001 i was working in brooklyn new york in a gang intelligence division. when my fellow officers and i learned the morning of the terror attacks in new york city we rushed to lower manhattan the fastest way possible which was by boat. when we arrived the towers had collapsed. the air was thick with dust and smoke. i put my hands over my mouth and nose just to breathe. my fellow officers and i worked all day and well into the night. we evacuated people from around the world trade center site we directed them away from the disaster. there was so much dust but i was

not given any respirator or any kind of protection for my eyes, throat or lungs. i had to wash the debris out of my eyes and throat picking up a hose. my fellow officers and i along with all the rescue workers and first responders could not stop doing what we had to do. the first night i finally left the world trade center around 10:00 p.m., after 12 hours. five hours later i reported back to the world trade center site at 4:00 a.m. in the morning on september 12th. i removed debris by using buckets and shovels. and at no time was i provided with respiratory protection. if i was not crying over what i was seeing in ruin, tears streamed down my face from burning irritating dust. i spent weeks at the world trade center site shoveling clearing away debris, searching for survivors and later sifting for body parts of the dead. we worked side by side and hand in hand with iron workers, construction workers, firefighters police officers all of us searched in the dust and removed debris together.

we were searching and removing wreckage of the world trade center. we were working night right on top of the burning smoky hot rubble. the fires never stopped burning. air quality we were told was not a concern. all of us working 24/7. the work was tough and dirty. we were choking and it was dangerous, but there was never a time when i even thought about quitting or leaving. i thought of thousands of poor victims. if our work brought the removal and recovery efforts closer to the end, we were glad to contribute. i live with the consequences of 9/11 every day. i have been diagnosed with lung disease, more specifically hypersensitivity nuanitis with fibrosis in my lungs. interferes with my breathing and destroys oxygen that restores oxygen to my blood. i cannot move around my home or take the stairs without wheezing

or gasping for breath. i start each morning connecting to a nebulizer and inhaling multiple medications. i am told i will eventually need a double lung transplant. have caused many additional illnesses. i have been diagnosed with diabetes high blood pressure, osteo arthritis and rheumatoid arthritis. i have suffered partially detached retinas in both eyes, each requiring surgery. prior to my world trade center service i was in top shape. i had no history of lung disease, i never smoked, i always had a physically demanding lifestyle and career. during my time with nypd i worked for five years in the plain clothes narcotics unit. these assignments acquired me to walk four miles per day making arrests and executing search

warrants. i have made over 200 arrests in my career and have assisted in hundreds more. i have been recognized by the nypd numerous times for excellence police duty. i have also received several medals from meritorious police duty. i was born and raised in brooklyn, new york. i played high school and college basketball. i played on the police league womens team which competed across the united states internationally. life has become very different since i became sick. every month i see the doctors at mt. sinai to receive care and renew prescriptions. this program saves lives. it is saving my life today. it provides medical structure in my life by coordinating doctors and medications. my family does not have to suffer the financial burdens of doctors visits, copayments deductibles and terrible cost of medical prescription which would not be available to me without the program. i would also note that the health conditions are worsened. many of the first responders,

colleagues have been diagnosed with cancer. many colleagues have died of cancer. the amount of dust which we were exposed was unprecedented. many of us fear cancer and other injuries arise late after toxic exposure. recently more than 60 types of cancers have been identified by medical researchers as being directly related to the toxins found at ground zero. cancer arises years and years later. for these reasons i would urge the committee to approve the bipartisan legislation before it. thank you. >> chair thanks the gentle lady and thanks all the witnesses for their testimony. i will begin the questioning by members and recognize myself five minutes for that purpose. dr. udasin, we'll begin with you. in your testimony you talk about the coordination of care that your clinic provides and that you can spend time with your patients.

can you elaborate in more detail about that? >> since david's sitting next to me, that's a really good example. david's condition was in such a peculiar location that we had to find different surgeons that were able to get to where his cancer was. so this required speaking to people individually to determine who had the right expertise to actually take care of his cancer. where he could get the right radiation, that was a big issue in david's case also because there were certain issues with how he was receiving radiation. and he could better go to one place and not go to another place. the good news for david was that he had his supportive family to take care of his other needs. but we've had other patients not

as fortunate as david where unfortunately we've had to help coordinate getting them into things like hospice care so my staff and i would like to acknowledge my administrateor sitting there who helps us arrange a lot of the important things that we do with our patients. getting them from place to place, making sure they get a good appointment, a prompt appointment. so you know you go into a doctor's office and you have an abnormal test. and then you have to go and see a specialist. if you go in just by yourself they say, oh, you can have an appointment november. that's their next available appointment. but i can assure you when i call up you'll be in by tuesday. so if that answers your question. >> well, just to follow-up with

the coordination and having time very important for the level of care that you give. was it possible to provide this level of care before congress established the world trade center health program? >> it was not possible to obtain this degree of care. initially we had in -- at the end of 2002/2003, we just had the monitoring program. and it was very frustrating because you could find something wrong with a person and we really didn't have the resources to make sure they got to see the correct person. and i'm grateful for the funding that we have now so that we can do that. >> thank you. for mr. howley and ms. burnett can you talk about your care before and after the creation of the centers of excellence in the

9/11 health act. in your view is it better coordinated? >> i was thinking of a story when you just asked the doc a question. i am probably one of her original patients going back to the monitoring program back in 2003. the first time i went there my blood pressure was basically somewhere off her chart. my sinuses were completely blown out. i had constant infections. i had gerd, which is acid reflux. she basically refused to let me leave her office unless i went straight to my doctor to be treated for blood pressure. and i'm about 6'3", and she's about 5'1" and i believed her she wasn't going to let me out of the office. so, yeah there's a big difference. and she's just wonderful. and i'm sure -- and i haven't

really dealt -- i've only dealt with one other of the doctors at her office. and i have never been to any other office so i can't speak about any of them. but the doctors, you know, are just tremendous. and they, as she was saying when the cancers kept coming back for me and it's reoccurred four times for me you can now now -- she can make those phone calls now and get you right -- and when she says tuesday, she's not kidding you. >> thank you. ms. burnett, would you respond to that as a patient in the health program. are you satisfied with your access and care you've received? and compare before and after. >> yes, i'm very satisfied with my care because in 2004 i started blacking out at work. and nobody knew why. and with the regular doctors i was just being sent out for

different kind of tests. in the program they send me to one doctor who sends me to another doctor to make sure everything is covered. they schedule everything for you. and i think it's very important that they follow-up in what's going on and how they treat us is very well. >> thank you. my time's expired. chair recognize the ranking member five minutes for questions. >> thank you mr. chairman. mr. howley, from your testimony i understand you've been seeing dr. udasin since the program was established. would you explain what being able to see dr. udasin at the rutgers center of excellence has meant to you? i know it sounded like a little bit from the earlier question. >> that's fine. how do i phrase? their knowledge that they've acquired because they've seen so

many of us when i present the next set of conditions or a former set of conditions that i had she can tell me, dave, go see dr. ax, y and z and not a, b, c. she has that template, those tools in her belt that will send me to the right person. >> do you think you would be in worse condition without being in the center? >> i wouldn't be here. this chair would be filled with somebody else. i would not be here. there were only three -- the last surgery i had last year there were only, i believe it was four surgeons that were qualified to do what i needed to get done. >> okay. ms. burnett, from

they're treating the whether or not he will -- whole person. >> yes, i have a primary doctor. they treat me for different diseases i have, like gerd sinusitis and one primary doctor coordinates all of that. >> do you think your condition would be worse if you didn't have access to the 9/11 health program? >> i believe it would be

terribly worse because i had that world trade center cough. i was not able to hold a conversation without the program providing me with the medications that i needed. >> dr. udasin, why does this cohort or patients need the type, the specialized care that's provided at the clinical centers of excellence? >> we have people with rare conditions like david that needs specialist help. we've been able to use our best university resources to get people that have seen many abnormalities on things like cat scans to get patients like the gentlemen i mentioned to have the cancer removed. but i think really the total -- the number of conditions that we see and the complicated cases that we see, so you might have

one condition and that influences another condition and makes the third condition worse. so if you have mental health issues and you have reflux and then you get chest pain and you have asthma you end uptaking too many medications and then you get a side effect for many of the asthma medications if you take too many of them can precipitate heart disease. so i feel like early recognition and treatment of all the conditions correctly allows for much better outcomes for people. >> sounds like with so many possible illnesses misdiagnosis would not be uncommon. >> well, that's correct. and ms. burnett described her sheer number of conditions. and, yes, that is the issue.

because you don't want to -- so you treat one condition really effectively, but you kill the patient while you're doing it because she had some other condition that you ignored. and so that's what i believe we're able to do as the primary care gatekeeper type person i can make sure all the specialists are talking to each other and making sure that the total patient is treated correctly. >> thank you. i think because of the complications and exposure to no telling what that you need to have someone who looks at the whole person and actually treats all the illnesses that you're subject to. thank you, mr. chairman. >> chair thanks the gentleman. now recognize the gentleman from new jersey, mr. lance, five minutes for questions. >> thank you, mr. chairman.

dr. udasin, can you explain in more detail your center of excellence and what that means and how many there are in the metropolitan region and what qualifies your organization as being a center of excellence? >> well, thank you. we're part of the non-fdny responder program. so fdny has a separate center. we're one of the new york-new jersey consortium which includes centers at mt. sinai nyu, stony brook, queens college and rutgers. >> mt. sinai and nyu would be in manhattan and stony brook is on long island and queens is obviously in queens. >> queens is sort of a nassau also. it's kind of on the border over there. right. we serve as a center of excellence in new jersey.

what makes us different our physicians are board certified in primary care specialties, internal medicine and occupational medicine. almost all of our physicians have at least two board certifications. as i said rutgers has an environmental center of excellence in our same building. and we do extensive work on exposure and health effects. and that happens besides the rest of the faculty that i work with in rutgers. so we have a lot of experience with exposure and illness. we have a preliminary doctor that actually comes into our practice and sees patients with us. we have mental health people that come in to our practice and

see patients. and then across the street from us we have our surgeons, our gastro gastro interologists and other specialists we need. by the way we changed our name to rutgers. we need to get that on the record that we changed from umd and rutgers. >> that's because state legislature has permitted the combination of university of medicine and dentistry and rutgers. >> right. so in any event then i have my registered nurses there helping us take care of patients, making sure that histories are obtained correctly, making sure people actually know how to use their medications. this is really very important that we have people making sure that not only medications are used by they're used correctly.

then i have my administrateive corps. and that group of people is performing audits to make sure that everybody else is doing everything correctly. we're using our pharmacy correctly. we're doing the best we can to keep costs down using generic drugs. and that all of our providers and people writing prescriptions that everybody is certified, appropriate to do this and that our patients actually get their medications when they get to the pharmacy. so that's part of coordination of care. and i can assure you we're performing these audits because i want to make sure we have funding to treat our patients. presumably you guys are going to

unanimous unanimously affirm our bill and i want the money very much to be there to treat our patients. >> thank you for your superb public service. and certainly we honor that public service. ms. burnett what position did you play in basketball when you played basketball? >> point guard. >> point guard. i was 5'8", so i never played basketball. mr. chairman, i have a letter from i think 38 members of the new york and new jersey delegation to speaker boehner and leader pelosi requesting early passage of this bill. i would request that it be submitted for the record. >> gentleman seeks unanimous consent to put in the record without objection, so ordered. >> thank you. and i yield back seven seconds. >> chair thanks the gentleman. now recognizes the ranking member of the full committee. five minutes for question. >> thank you, mr. chairman. dr. udasin i wanted to get into

the -- try to have you exifplain if you will, the importance not only of the rutgers center but all of the centers that are part of this world trade program in terms of research. because there is an extensive research component. and i want to kind of emphasize if you can how you are developing diagnosis and treatment of disorders that, you know, people might not even be aware of. and how that research and you know, the uniqueness of the center makes that possible. so could you just kind of describe how the rutgers center's involved in research into world trade center related conditions and how that research is improving our ability to diagnose and treat wtc-related health conditions and the benefits of that research. >> so answering the rutgers

only -- >> that's fine. >> rutgers nyu research we have a lot of sleep apnea experts in those two centers. and what i'm really proud to say is that between our laboratory toxicologists and our sleep experts, we have developed certain markers that we're seeing in certain of our patients. one of our sleep experts presented this at the recent american thoracic society meetings that certain markers were developed, that certain people can be predicted possibly to have sleep apnea. and this is really important because these are inflammatory markers. and these people at 9/11 site were exposed to all kinds of toxins that can cause

inflammation. so because of that association between environmental exposures and inflammation, we've been able to find people sooner, get them treated. and for people to think about sleep apnea and the environment because traditionally sleep apnea was thought of something that you had to be enormously obese to get. and we have patients that are not quite playing point guard but are in awfully good shape and have sleep apnea. and as i said, we because of our occupational expertise, sleep apnea's a very serious condition. there is somebody who died recently, a celebrity on the new jersey turnpike because a bus driver fell asleep. and we have a lot of patients who drive commercial vehicles,

operate planes, operate the subway, operate all kinds of heavy equipment. and it's really good we are able to treat them and keep them awake and i feel like that's one thing our research has accomplished which is not only applicable to our patients but applicable to other people with environmental exposures. >> let me -- i appreciate that. the other thing i wanted you to get across is how we can expect an increase among the population that of these 9/11 related conditions. we find more cancers, more disorders disorders, as people get older that maybe didn't exist before and that have to be -- and that now we're finding through your research or others in these centers that are related to 9/11 that we didn't know about

before. >> so i want to say that certain kind of malignancies have very short latency periods. and you'd expect to see something like that within just a couple of years after exposure to toxins. but other toxins like asbestos have much longer latency periods. and they might be seen later on and at a different time. and if i could use just a few minutes to also answer a question that you asked dr. howard earlier about mistakes made by providers outside of the program. if i could just add that we have found in the program that people have been undertreated by local providers for various cancers for various severe lung conditions like