tv Politics Public Policy Today CSPAN June 12, 2015 3:00pm-5:01pm EDT
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 hally. without objection, so ordered. we have so 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're recognized. welcome. >> thank you mr. chairman and distinguish members of the economy. my name is john howard and i'm the administrator of the world trade center health program. i'm very pleased to appear before you today to discuss the program and those it serves who
responded to or survived the september 11th, 2001, terrorist attacks at new york city and in pentagon and in shanksville, pennsylvania. those responded to an epic disaster and suffer mental and physical injure, illness and the rick of premature death. the programs members responded to the 9/11 disaster from all 50 states and it has been stated from 429 of the 435 congressional districts. the original effort to care for those effected by 9/11 toxic exposures operated as 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 the 9/11 health and compensation act became law. stabilization of funding allows
the program to more adequately care for 9/11 responders. in calendar 2014 of 71,942 current members enrolled in the program, 20,883 received treatment for health conditions and 20,059 received monitor to make sure any health condition that is specified for coverage by the program. since the implementation members have been treated for a number of different health conditions. 11,473 have been treeded for asthma. 6,772 have been treated for post-traumatic stress disorder and 67979 have been treated for stress disorder. they suffer from mental and physical health symptoms and
take multiple medications. certain types of cancer were added in late 2012. since then the program has certified 4265 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 a depth of experience dated back to september 11th, 2001 and the physical and mental health needs of 9/11 responders and survivors, they are very familiar with. the extensive clinical experience with the responder and survivor populations 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 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 expensation 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 over coming the difficulties that members might other wise 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 effected by 9/11 as a unifiedco hoert, the program greatly aids not only the individual members but also our 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 happen yoi to answer any questions you may have. >> chair thanks the gentleman and i'll begin the questioning and recognize myself for five minutes for that purpose. dr. howard, would you continue to elaborate a little bit on the history of the world trade center program 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 doctors and others began to observe that individuals that were responding were becaming 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 to it effect the operations of the centers of excellence across the country and the patients who he's 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 burn balm add stinsters the victim compensation fund which is housed at the department of justice. is there coordination between the operation of the victims compensation fund and the world war trade center health program? >> yes, sir, there is. we have a data sharing and medical review with the victim's compensation fund. we regularly meet with the staff. our staff is imbedded with their staff to assist in the medical review. the victims compensation fund has adopted our requirements for medical review to date. we have proverdicted information to them -- provided to them on 18,262 of their vcf claimants and continue to work very closely with the victims
compensation fund. >> how much higher is the federal employees compensation act feca rate compared to medicare reimburse rates for hospitals? >> the statute, the zed rogua act sets the reimbursement rate according to the worker's compensation rate of the forward government. medicare rates are lower but maybe by 10-20% lower. so they are -- the fecka rates are higher and our reimbursement rates for providers are higher than medicare. >> dr. howard i can imagine that it is logistical challenge to provide care for the responders and survivors that 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 twho have more experience -- who have more experience treating these wtc physicians. >> the nation provider network that we have that is currently seeing 8287 individuals, we have a 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 we have in our centers of excellence in new york and new york.
we also provide them with additional training. we are working with med scape 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's. >> thank you very much. my time is expired. recognize mr. green. five minutes. >> dr. howard prior to the passage of the james rogua 9/11 compensation act of 2010 you administered the cdc grant that funded medical monitoring for
9/11 survivors and responders and that program was funded through discretionary dollars and there was always uncertainty about what amount of discretionary funding should be appropriated. dr. howard can you describe how the creation of the world trade center program has ensured that the responders and survivors have gotten the appropriate help they need. >> thank you. 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. the 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 that suffer from ptsd and some highly resistant ptsd and i'm sure if they were
here with me they would say how stressful year by year funding is for 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 that 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. where the zed rogua act passed all of us members and those administrativing the program, breathed a sigh of relief that we had five years. we never had that. >> the compensation reauthorization that would permanently extend the program, can you explain how a permanent
extension of the program provide that peace of mind. you talked about the medical monitoring and the treatment they rely on and continue to meet their needs? >> well as i say the assurance of having the same provider especially for our 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 that five year horizon is extremely helpful for the efficiency and the integrity of the program. >> it seems the patients enjoy a great deal of understanding from the providers, the drrz and providers in the program how do you think this effects the
patient outcomes? >> wout doubt the providers that i 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 have to the providers that we are fortunate to have cannot be duplicated anywhere else. >> do you think that continuing a program is so important in 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.
>> now recognize the vice chairman of the sub-committee, mr. guthy. five minutes for questions. >> change you mr. chairman and dr. howard for being here. i spent six years of my life in college and grad school in metro new york and one of my favorite things to do back when i was an under grad is use the uso and there was always uniformed public servant trz and -- servants and i always engage -- and i am a talker and always like to engage them. and something that opened my eyes and i would emphasis and go 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 injured or whatever we have assistance in place to -- disability insurance and so forth. and so i think a lot of us that
aren't in new york continuously and is that programs aren't in place. and i know it is un he's in the massness of it but why is it unique that other people that -- that it requires its own system in other than the volume. because you've opened my eyes to some things today. the challenges that you've said but emphasis why this is unique that it needs its own program and why diseases are not normal -- i don't know if normal is the program that any other normal situation that firefighters or other people would be in. >> i would be happy to. and the 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 a delayed onset of ptsd. 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 is new in this population. in terms of respiratory disease, we're seeing a onset of obstructive airways disease beyond five years after exposure. we're also seeing bronchial hyperactivity 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 seen 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. and i want to get to another thing. you said there was 71,000 people in the program. what the is the criteria? do you have to be on-site for so many days or be in the rubble or? >> the simple -- >> or blocks away. what is the -- >> it is highly specific about the criteria for eligibility in the program. and it includes -- let's say for a new york city police officer, 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 with survivors, there are eligibility, five levels of eligibility for survivors. so if someone comes to our program and wants to be a member, the first step is filling out an application -- a lengthy application, unfortunate unfortunately, i might add, in which all of the ffgs is solicited so we can establish whether or not their experience meets the requirements of the act. >> and i think some concerns debated before and i want to emphasis this is there any where in terms of health care and getting the care they deserve, i think -- i know i remember asking the question, why such a separate and unique program, and you've given me some good things to think about it. so i appreciate it very much.
and i appreciate and i yield back. >> and i recognize the ranking member of the full committee mr. plume, five minutes for questions. >> thank you. the world trade center health program provides on clinic centers to provide monitoring and medical care and they employee clinitians with a specialized knowledge space and deep experience in treating the unique physical and mental experience of 9/11 responders and i know you've talked about this and i'll following up on what mr. guthrie said. i know that patients in the new york city metropolitan region see personal physicians for the general health care needs but often obtain monitoring and treatment at these centers and i also understand that if somebody is another part of the country they can go to a network of doctors that are provided through the program but some of them also come to the centers. i know that at the new jersey centers, we get people from all over the country that will travel because of the expertise
that exists. so if you could just comment on the treat benefits of individuals using these centers rather than their personal physicians for their 9/11 related health conditions or even traveling when they can see someone who is part of the wtc network and they come to the centers. >> yes, i would be happy to. i think it boils down to the difference in -- in physicians in terms of their expertise as you said. occupational environmental physicians who are schooled in that particular sub-specialty know how to connect 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 and i didn't learn to go back and figure out an extensive history and what were your exposures and is it related to this condition that i see. that is a specialty 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 say yes, your exposure, i'm going to make a determination that your exposure caused that health condition or contributed or aggravated that health condition. >> i'm trying to speed up here because i want to get at a few more things. have there been any problems with misdiagnosis or treatment with 9/11 health treatment when they have relied on their regular health physicians. >> not that i'm aware of. within the program we look at all of the care. >> okay. and can you discuss briefly how the centers coordinated the care delivered to responders and
survivors with the care provided by the personal medical providers outside of the centers. >> sure. 's know, the centers is a hybrid program, it is not your normal health program and where you go in and everything you 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. so that coordination is done in the cce's so if they see a condition that we do not cover then appropriate referral is made. >> then i'm going to try to summarize this last question. my concern obviously is that i don't want this program terminated before we have an opportunity to reauthorize it and that is why we're having this hearing and trying to move quickly. but in preparation, if reauthorization legislation is not signed in law by september of next year and the program is
terminated i understand that hhs has certain notification requirements you have to follow and can you tell us what you would have to do and obviously we don't want this to happen but i want to stress there is always that danger. >> it would be a nightmare for me personally and for our members and 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 what 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 is happening and certainly when it happens and the and the and the efforts to support their efforts in finding additional
did. >> 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. >> thank you very much. >> now recognize the gentleman from kentucky mr. whitfield five minutes for questions. >> thank you very much, doctor howard, thank you for being with us this morning. i want to follow up briefly on -- when we think about health care systems and frequently people all work with some company that provides health care or medicare you have to be over a certain age, medicaid, income below a trio or tricare and people from around the
country, whether emergency responders or volunteers, came to respond to this emergency in new york this disaster on 9/11. and you touched on the criteria. i think you indicated there are 71,000 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 anyone listening not enrolled in the program that may be eligible would call the eligibility line and sign up for our program. >> all right. and won't get into the details, but the?s]ykykc, for eligibility, i'm assume ug had to have been there x days and is that correct? >> right. there are 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, oft patients that you are caring for right now, what percentage 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. if you've gone in for an mri or ct scan, at the bottom of the form it will say is this a result of an auto or a work accident and if it is the health insurance will not pay for it, they will refer you to other insurance. and for survivors, it could be an issue and then we recoup as many as we can from the health
insurer. >> what percentage would be covered under say workers compensation program? >> theoretically work-related injuries and illnesses would all be covered. but there are great difficulties for responders in accessing workers compensation benefits because often times there is a condition. not the original condition where on the event someone had an acute injury and it happened within a short period of time. but some of our diseases, and our program, their onset are 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? >> it is not unusual. many of our members have had workers compensation benefits and we are in the process of recouping from workers compensation. but it is not the majority or even near the majority of our members. >> we know some people have indicated early on i remember when there was a first discussion about this being a unique program but i know there is health programs in effect for employees at savannah river paducah, oakridge and so forth which is similar to this, because those workers were exposed to certain elements, many 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 in. >> yes, sir. and in fact, we administer the energy employees illness
compensation program together with the department of laib and the department of energy. it is a program that bears a lot of similarities to our program at the world war trade-)$fw center. >> and so if you worked at the world trade center and you are covered and havep one of the 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 are connected. >> thank you very much for the great job you do. >> thank you. >> now recognize the gentleman
from oregon, mr. schrader. >> my questions have been answered mr. chairman, thank you. >> then the chair recognized gentlemen mr. caster, five minutes for questions. >> thank you mr. chairman, for calling this hearing. and i would like to thank all of the first responders and survivors in the medical -- and the medical professionals and for traveling home run to capitol hill to provide some continuity and the center in the world trade center health program. i would like to thank my colleagues especially from new jersey and new york, congressman palone and lance you all have been champions on this committee on this endeavor along with congresswoman clark and maloney and i think congressman king is still here and the entire new
york delegation especially. i strongly support the james dad rogua 9/11 health and compensation act because it will provide that important certainty and continuity of care going forward. and it is interesting to see the list and understand there are first responders and survivors from the world trade center attacks all across america. 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 9/11 in the weeks and months and years afterwards. it is vital that we continue this specialized care for all of our neighbors and all of 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 health initiative that often gets overlooked is the funding provided for research into 9/11 related health initiatives. the program funded 35 projects to investigate questions about 9/11 related to physical and mental health conditions. can you provide research provide by the zed rogua act? >> would be happy to. we are happy by the original drafters to provide money for the research into the health conditions that our members face. and as i mentioned before we've learned quite a bit from that research. and i'd like to highlight just one aspect of it. in additional to mental health andress and cancer research and
autoimmune research and is the search on children who were at the time of 2001 attacks. there were a number of elementary schools and some in high school that were immediately impacted and we have a number of those projects that are 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 review journals. the world trade center registry alone has publishedé÷yky our pivotal papers in cancer auto immune diseases, asthma and other respiratory disorders
have allowed us to provide better care, more focused care for our members. ms. castor: and are the results of the research disseminated in an organized way to providers and families so they have access? dr. howard: yes. we have membership newsletters that highlight findings from research. all our papers are published on the world trade center health they know all of the papers are public published on theat world trade center health program website edia and these are all peer reviewed publications so they appear in the science journals and i'm d more 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 ou r website. >> so if the zed rogua 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 what i think is the most important advantages of the program to our see site, is looking at the long-term mselve health effects from 9/11. >> okay.ng and you testified earlier that health conditions often manifest themselves years later. we the zed rogua act provided ou funding for outreach efforts to more individuals that may be eligible. we're now several years into the existence of the program and youdditio have successfully enrolled more r thanet 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 health moving forward and that is why the reauthorization act here clarifies that funding an may be used for continuity of ving f care andor retention. give me your opinion on why
efforts of continuity of care and retention of members is important moving forward. >> as you say our important over all since the inception in to th july ofe 2011 with the zed rogua act has grown 18% over all in membership and we credit that to 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 tain t remain in our program. and every health plan loses members because we do not go and do outreach to retain them. so that is on balance now after nce the first five years. we hope to emphasize in what we , we h hope is our second phase that retention of our patient population is as important as their original recruitment. >> and howhow do you propose to do he new that for first responders and dr survivors outside of the new york, new jersey area say in
state of florida? >> fir -- first of all, we do onder things as a stteam. we sit down with our e a su representatives from survivors ande responders.and me we have a responders steering committee which is active and meets every month and we have a responders steering committee that 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 modalities that we could use and often times we're told by our members what is the most effective. >> thank you very much, sir. i yield back. ai >> nowrman recognizing the gentleman from texas dr. burgess five minutes for questions. >> thank you mr. chairman.pe thank you for having the hearing. dr. hour howard thank you for being here and to our witnesses on the second panel, thank you for your participation and the to people who are here in testament, a to the work that you've done.
i also feel obligated to recognize the work of one of our colleagues, a former member veto fas ella 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 as the interest that i did become an early supporter of representative king's work on duck this and in fact i was the one ssion who ran thein bill on the floor inoor of the waning days of the 111th congress in the late lame duck you session in december when the or us bill finallyto did pass on the floor of the house. but dr. howard, i'm interested of hea in -- you said in your testimonyitions c that you provided for us today that certain types of cancer were added to the list of healthare? conditions, covered under this ward: ye act. could you share with us what am those cancers -- what type of cancers those were -- are?ort way >> yes. currently covered in the program
are every type of answer. just a short way to approach to pic this. every type of answer except uterine cancer. >> but are there those that are you more -- if you were to pick the top three malignancies what on would those esbe? >> i think if you look at our 4,000 or so cases right now, probably the top ones would be thyroid cancer. there are five common cancers east c that americans get, skin being , whic the h one. that is our top cancer. there is breast cancer, that is also a top cancer for us.n a lo there is colon cancer which is co a top cancer for us.we' thyroid cancer is another cancer for us. and o but we've seenft a lot of very logica common cancers likel that. and we've also seen some very rare type cancers.rare c andan oftentimes from epideemy
logical basis, it is helpful from doing research on a population on their exposure cancering rare cancers. at >> and thatin speaks to the value of having people that have expertise in treating the types of injuries encountered because an uncommon cancer can be a rd: ex difficult diagnosis to which to arrive? >> exactly. and if thisco hert were distributed, we would no be able to count those. it would be very hard to find person those rare cancers if the patients were not seen in our that 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 would not be available. just as far as a brief comment if you will on the -- on the observe versus the expected cancer rates in the population're that you're following, is this w
number of -- i guess i clal kate it to be -- calculate it to be t 6% based on the cancers you reported, how does that stack up to the general population?have >> well that comparison, i'm afraid we can't do at this time. that would be something we would have to wait and see what our researchers come up with in oing s giving us that kind of number. and we're now looking at and the fire department is doing a research to compare our world te trade center firefightersrs t to another cohort assembled by the institute of firefighters not involved in world trade centers tch so we hope -- that line of s. research to answer your question some day. >> so it would give a better re control age match for people in similar occupations? >> yes. >> and just switching gears a little bitutth and you mentioned also in your testimony, that you are trying to aid not just the
individual members but 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 borrows -- h insu boroughs as to the type of workers compensation that might be provided to the members of have firefighters community or the type of healthth insurance, 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, the legislation and the governor s legi have already responded to this provid issue significantly by providing a mechanism by which respondersp a co survivors,nd can sign up to a program. they don't have to actually make
a claim but they can register and then if she 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 we hop will learn especially from these long duration disasters. >> thank you mr. chairman. i yield back. >> chair recognizes the gentle d like t lady. >> thank you.surviv i too would like to thank all of the first responders, the sponde survivors, those whors treat them additi foron coming here today for the hat ma 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, doctor howard llinoi there are 13 first responders and between 1-9 survivors the way the data is kept enrolled in the world trade center healthde program. so clearly there is no concentration of those individuals in any kind of c. program of nationwide providers. so i imagine there is physicians that have one or two, et cetera. so how do you maintain the cohesiveness of that network? >> i think that is a very good is head question. and think there is a couple of le phy wayssi that we do that. first of all our nationwide provider network is headed by very capable physician who is a part of our new york-based s a grea centers, new york and new jersey-based centers of clinical excellence so he participates in all of our meetings and a great
educator and teacher for the cad ray of physicians that do posure monitoring of physicians and as you point out the physician that may have one or two.al cen those physicians themselves are o, we occupationally trained and so they can connect exposure and health conditions at our clinical centers. as i mentioned, we're trying to -- we've been pleased that med scape is helping us put together a constant training so to speak, 24/7, you can go to their website and get togeth informationer about the latest findings from the program that may influence your practice.the prog so even though we have a ven th distributedou network and those e physicians in the nationwide program may have one or two patients they are seeing we want them to be a similarly situated knowledge wise as the simil rest of thear physicians.
>> great.f our so my understanding on the data ing of is there are a total of 71,000 people, approximately, that are in the program.00 res and then it says, in the fact ated h sheet that i have, more than 30,000 responders and survivors more have at least one world trade center related health condition. so there are some people in the program, i rather, more than dr half that are simply -- not simply, that are being monitored, is that the prog difference in ranumber? >> yes. we offer monitoring and treatment. so if you are in the monitoring m, the program, and you do not have a you' health condition th't 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 a -- ky: bu at world trade center health physician has connected to your exposure. >> but the monitoring is done bear within the network and there is
not an additional cost to that : so t individual for thehe monitoring?tion t >> no. our members bear no cost. or spo >> so the population that you serve includes some number of families of -- or spouses of firefighters, some are in that program. survivors that may be workers inetween the area, f residents, students day care participants, et cetera. i'm wondering what the breakdown is between first responders and then survivors? >> in terms of enrolled members in our program. currently total enrollment of the population as you say is 71,942. general cam responders, which is police, construction workers,
volunteers that came from all over. >> firefighters. >> is about 38953, our fire department is8,133 survivors in the 71,000. >> does anybody leave the program? aside from the issue of reenrollment, so do they have to re-enroll every year? >> i'm sorry?does any >> do they have to re-enroll -- >> no, enrolled once in the program.we >> does anybodyha leave? >> i hope not. but i do not know that for a fact. we have members who lea passed away, 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 non-related conditions. >> thank you very much. >> chair thanks the gentle lady. i recognize the senator from new
jersey, mr. lance for five cogniz minutes. >> thank you, mr. chairman.t i don't have any questions but ngress i want to thank you for what s work you're doing, dr. howard. more i want to thank congressman palone who worked on the issue on o over thef course of more than decade, and all of the members of the congress who recognize the importance of re tha reauthorization of the registration. this is bittersweet for me. new jersey lost over 700 residents. my son was playing freshman high school football, and he had a teammate whose father did not ssmate come home. i lost a princeton class mate 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 world god created is of moral design, grief, and tragedy and hatred are only for a time. goodness remembrance and love para have no phraend, and he concluded by paraphrasing st. paul to the romans that no evil with what separate us from god's love. what you have done is based on goodness remembrance, and love s and that's certainly true of theur firste ioresponders, and i thank all the first responders, and i'm sure this legislation will pass unanimously here in the full committee and floor of the house. i yield back my time. >> the chair thanks the gentleman. i recognize the gentleman from new new york for five minutes for york questions. >> thank you very unmuch, mr. af chairman, and, you know, i, too,
representing new york, new jersey, the surrounding area that was deeply affected. there are 1,851 people in my district who are program ple in beneficiaries of all you do, dr.ies of a howard, so we're very appreciative of it.rtain ot you've answered some of the questions, but i want to bring up certain otherçsd things.s in the many of us in the aftermath, mr. lance mentioned the friday after the tuesday of the attacks many of us in the delegation went to the site of the attacks. it was -- you scratched your head. it was like a nightmare, you couldn't believe it. then you realize it was real. that you walked around other people walked around. we were not wearing masks.
they gave us masks but did not make it seem as if it was that important, so i bet a lot more people got exposed. i went back several times, no ill-effects, thank god but people now starting to get effects, do we have trouble tracing it back? is it -- is it difficult for people to prove so many years later that their god illnesses are result of exposure from the world trade center site? >> it is difficult.to, is it's difficult for any of us to recall exact detailsex ofpo what we s diff did a month ago, a year ago, lete alone this many years ago. for new members coming in our program, a lot of my questions , they that we ask about the exposure o and recall is imperfect in all we ask of us, but we take that into consideration in terms of the questions we asked them, the answers they give us.
>> first of all, doctor, thank . you for the great work youenge do.ou do, r really great work.ink it makes me proud to have been an original ars co-sponsor of this legislation. i think in all the years in d on one congress, i never saw our delegations more united on one thing, particularly the new yorku see wh delegation. since the program has been continuing, and, obviously when things continue, you see what works, what doesn't work you d diff 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 een a should consider fodmodifying or n admi changing to make effect. >> we haven't found anything in the program. we look at all of the items in act as helping us they consider
the act to be well written document giving us a road map and as for so many years, over decade, we had no authorizing language. we made it up as we went along together with our clinical center of accidents.d 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 chmark nine outs of ten benchmarks, but desperately in need of care, can exceptions be made to ensure ca 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 air at all, it's on the side of including someone in the health program. to unde >> as you noted in your testimony, you know the work dope to the program, work has h been done to understandpr the effec 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 ch for adolescents. can you talk about that? >> we are privileged to have a number of researchers in new york interested in this area pleted pediatric research for 9/11. we have seven projects funded in the area. they have not been completed asse s 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 coup -- couple of very good york researchers working on them. >> thank you, doctor, and, teful. again, thank you for all you do and we're really very very he cha grateful to you. it affects those of us in the new york area every single day, and our con stitch wents are grateful, thank you. >> chair thanks the gentleman. i understand you don't have in the questions. the chair recognizes ms. brooks for five minutes.990' >> thank you, mr. chairman. dr. howard, i'm a former deputy mayor of indianapolis in the late 1990s, and we hosted the police and fire games in the summer of 2001 before the 9/11 attack, and there were many two parrished in the attack, firefighters who parrished and participated in the games, but we also have a group called task force one that traveled from have
indiana 5 to the world trade center, and i since learned because of the 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 search dog traveled immediately that day ral ye and continued to operate around lis the clock with all of their man an brothers and sisters in new e, cha york.rl there was a story several years a ago about an indianapolis fireman and member of task force one, charlie, who was deployed, and he said in that tv story, he said, and i quote, he got a at he little of that world trade centere cough from the mix of the fumes, bute he said he would going
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 continue day in and day out to risk their lives for fellow all citizens. i thank you and all the men and countr women here today for their service and all the men and women around the country who did answer the call. i'd like to ask you what you lose sleep about with respect toesti the program? what are your greatest pr challenges? you answered ogincredibly well so many questions posed to you, but what would you say are the greatest challenges facing the program that we must . howa reauthorize? how do you plan to respond to those programs?have to 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?excellen >> i think you know one of the issues that we faced in the program, and i think i can speak provi for all of our clinical centers of excellence and our national nationwide provider network is when the bill passed the president signed it on january y shor 3rd,t 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 opened our doors on july 1st 2011, but i think what we did over the last five years and we hope to continue to do is quality improvement of the ntinue services we offer.
our pharmacy benefit plan, for instance, and other support for the members, we want to receive their input so that we can continue to improve the program. >> thank you, thank you for your service, i y yield back. >> i recognizecollins five minutes for questions. >> thank you, mr. chairman, and ngress i i, too, want to recognize all upport 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 anbipartisan support as previously stated, unanimously eprese pass this reauthorization. but first of vaall mr. chairman, i want unanimous consentbr to mr. enter into a record a statement mr. fromco representative dan donovan who represents stanten island and portion of brooklyn. >> without objection, so . ordered. >> and i'd also like to recognize representative peter rett king that'sy with me today and thank mr. -- or dr. howard for
all you've done. you answered all the questions.re m erupt os105 towns, and i think most, if not all the volunteer fire departments, we are mostly volunteer, one paid in the district, sent individuals down to ground zero. that's what firefighters do a community, a brotherhood, and i'm just happy to have learned more today about how those and yo individuals are more than likely in your program being monitored and i think, again, on a this bipartisan prway, we're with you with t anhad you're doing great work, and i don't believe you're going to have t to lose any sleep about shutting the program down. with that mr. chairman i yield the remainder of my time to u for representative king for commentsto sit he would like to iadd. ge >> that's appropriate. the chair recognizes the gentleman. >> i thank you for the opportunity to sitlike in and take
part in the hearing. i thank the gentleman from new york for the yielding time. i would like to say there's no more important bill to be passed during the time that i've been re tha inn congress than this 9/11 act. i added 150 districts, and every day, rare lung diseases respiratory illnesses, blood the fact cancers, so this is something that's absolutely necessary to continue, and i know that people may find -- this might be wrong that might be wrong, but the fact is this is as effective as any program i've seen since all the time i've been in congress d and it provides a need which is first 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 prime residents of the area, and really, everyone who answered t thei the call that day, they did what they had to do, and those thes suffering these illnesses hang people in theed t prime of life who
ause the have, again lost their jobs, have these debilitateing illnesses that changed their lives all because they did what all of had to be done. y again, i thank the chairman for holding this hearing. i thanktime the committee for taking the issue up. i thank you all for being here and thank you to mr. coal lips for his time and i yield back. >> 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 ellme thank all of the firstrs responders who are here today. you know, a very emotional subcommittee hearing so i'll try hard to stick to the informationons. and get into some of the questions. you h along the lines of where we are today, and i know that you have ha already stated, dr. howard that as the number of affected first how
responders have come forward you h those who have been determined to have cancer, how many are in existence right now?affect 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 some of o those cases may ve mor represent an individual that mayhat' have more than one cancer but generally speaking, that is the number of members that we have who we're -- who we certified with cancer.u determ >> 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 p seeing the on bet patient makes the connection between their exposure and the d to, health condition, in this case cancer. they can say it'sthei caused by physic contributed or ag grated by their exposure.phys that's theicia determination made by -- >> i see. >> we don't make it in the program. that's an independent view ma that the physician has, then they submit it to us sure that all of the supporting information is there and went 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 sureil including the determining physician and us that this is a case to be certified. certification, then means that physic you get your taerns covered for health care. >>o uh-huh. having the concentration on cancer leads me to the next question which is do you the n 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 s cancer. the original cancer petition an pit that chairman pits referred to, 001, and then soon after that pros weta had a petition with regard to prostate cancer and then five et qui others. with the five otherstefor we did not find specific scientific -- evidence to support their dition 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 questions on their scientific basis. >> and then in regard to auto autoimmune diseases, you determined those would not be identified or added? >> right. >> can you expand on that?un >> right. we receivede a petition, our last
petition, to add a large number of auto immune diseases to our ulated statutory list. we reviewed all the information nd it including the very excellent study that recently had stimulated that petition by so much 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 at is emphasized so muchgo the importance of research funding in this program is the ue. additional work that is going on doesn' by other cces and our world trade center health registry to look into the issue.llmers: it does not mean that forever and ever it will not be added, and i' but at this time we are not adding it. >> well thank you dr. howard, ongoin i dog 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 u so m because we don't know what the future holds for us and, againlela
goddy 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 i members of the subcommittee have had an opportunity to ask questions, we can ask for e. consent, i ask that members of the full committee, ms. clark, give five minutes for questioning. the chairf recognizes ms. clark.zadrog >> thank you very much, mr. o yield chairman. we've been joined here by congressman gerald nadler of new york, original sponsor and i ing an wanted to yield time tod him. >> thank you for yielding and long w let me thank the chairman for he holding the hearing and the members. i simply want to say that as someone who is -- along with mr.s proven king and ms. maloney one of the three original sponsors of the bill. we struggled for years and yearsor to pass it. i'm glad to -- and history has proven the necessity of this bill, i want to thank dr. howardpport
for hifos 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.ant to we know the u 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 sur essential because diseases do not go away.so i u 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. >> thank you. dr. howard, just following up on a couple of the questions that were asked about the condition, for the record, what is the process by which you can add new conditions to the progra what is the process by which you can add new conditions to the program? >> well, first of all, the administration has 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 cancer the second a specific type of prostate cancer, the other five we have found insufficient evidence for. >> i understand that the statute outlines specific timeing requirements for you to respond to the petitions. could you describe that for us? >> right. the administrator has six days to respond to a petition unless the administrateor defers to our scientific and technical advisory committee, and then the timeline is 180 days. in terms of the first petition of cancer, we referred to that advisory committee. they had 180 days to make their decision. >> do you have any concerns with
this statutory time frames under which you 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 there was a short period of time so unable to engage in external peer review. >> very well. can you briefly tell us about the registry? it's our understanding we have to create individuals exposed to the world trade center terrorist
attack. tell us about the registry why it is important tool for studying the wtc health related 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 71000 members also, and i might add i was told by director last week that they have registers 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 so many years they study them to figure out what their experience is.
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, issues of asthma, mental health, ptsk, et cetera, came from the world center health registry study. >> it's important to continue the work? >> absolutely vital. >> thank you. i thank the ranking member. >> the chair thanks the gentle lady. that concludes the questions of members here present. i'm sure doctor we'll have follow-up questions from members. we'll send you them in writing. we ask you respond proply. >> thank you, mr. chairman. >> thank you, that concludes the 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.
all right. the time of recess having expired, we'll reconvene. i'll ask the questions to please take their seats. ladies and gentlemen. ladies and gentlemen, please take your seats. the committee will reconvene. i'll ask the guests to take their seats, and i'll introduce the second panel. we have three witnesses on the second panel, and i'll introduce them in the order which they will present testimony. first we have dr. iris udison,
medical director environmental and occupational health sciences institute, robert wood johnson medical school, welcome. secondly we have mr. david howley, retired police officer, new york city police department, and finally, we have ms. barbara burnett, former detective, new york city police department. thank you very much for your patience, for coming, for your testimony. your written testimony will be made part of the record. you'll each be given five minutes to summarize. there's a series of lights on the table. you'll see green first yellow, and when red appears, we ask that you please conclude your testimony. at this time, doctor, you are recognized for five minutes to summarize your testimony. >> i'm iris udasin, serving as director of rutgers clinical center of excellence in new jersey, one of six clinics in
the new york-new jersey area providing medical monitoring and treatment for world trade centers first responders. i'm a physician board certified in internal and occupational medicine and professor at rutger rutgers and member of the national toxicology panel a panel that advises the national institute of environmental health sciences concerning the relationship between exposure to toxic chemicals and he'llalth. i want to thank the committee for giving me the opportunity today to testify given the importance much our excellence and provide the best medical care through the act to the brave responders who suffered from multiple chronic and often disabling illnesses like fibrosis asthma, gastric reflux, and sleep apnea. we have been monitoring world trade center patients in new jersey since january 2003 and
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 this 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 younger than usual cancer patients and are nonsmokers. they were highly exposed to environmental toxins as well as severe mental health trama for what they witnessed from seeing people jumping from tall biddings to their death or finding charred remain. our designation as a clinical center of excellence allowed us to provide quality of care for these responders by centering the care in the 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 the personal knowledge in new jersey has allowed us to understand this cohort of patients using medical and pharmaceutical resources wisely to accomplish the following objected objectives. coordination of care for complex cases, diagnosis and treatment of patients considering physical and mental health aspects of disease, use of state of the art diagnostic techniques for early diagnosis in treatment, use of knowledge gained in our treatment of patients to allow for early intervention, enabling our patients to stay at work. i'm proud to share this panel with david howley, a retired police officer who performs many months of zench and rescue work at the site. david presented with swelling in his neck in 2006 which was
eventually diagnosed as an aggressive med 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 parties with this cancer in new jersey alone. david's treatment required a team of doctors including myself as primary care the general oncologist radiation oncologist, general surgeons, and ear, nose, and throat surgeons because of the nature of his cancer it's been extremely difficult to treat, but at the present time, he's tumor free since april of 2014. the second patient i want to tell you about is a retired detective with severe shortness of breath chest discomfort fatigue, and inability to perform his duties as police officer. i was present at the 9/11 site on the day of disaster reported being engulfed in the dust cloud, and witnessing people
jumping from buildings. he was treated by his personal physician with five medications for his respiratory issues, but no other conditions. his evaluation at our center confirmed the presence of asthma but we were able to diagnose gastric reflux, sleep apnea, post-traumatic stress disorder and panic attacks. he was given treatment for the 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 his asthma medication and learned to control his attacks. at the most recent examination, he no longer needs mental health medications and is enjoying retirement. the third patient i want to speak about works as a consultant to prevent tax fraud, and an ab normality was noticed on the chest x-ray, and he was
referred for a cat scan. a small nodule was noted in 2014, growing larger in january. this was evaluated by a raid yoelgs who was an expert in interpreting lung cat scans. she was concerned about the specific nature of the nodule and growth since the original scan. this patient was referred to our university surgeon who removed a stage one lung cancer not needing therapy or radiation, and i want to say this patient is back at work, overseas looking for people who cheated the government paying taxes. and, finally, rutgers university and nyu have combined to do research finding markers for sleep apnea associated with environmental exposure. this expertise allowed for early diagnosis and treatment of obstructive iveive sleep apnea, enabling us to get people to work safely. my fourth patient is a pilot
with the law enforcement agency with a history of gird and seep apnea. thanks to early diagnosis this patient has been successfully treated for his conditions, and he's fully qualified under federal standards to skillfully operate his aircraft. he asked how to thank me for the treatment, and i said, should continue catching terrorists. in summary all 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 who are exposed to toxic agents and psych psychosocial stressors. we continue to achieve excellence and cost effectiveness in treating our patients as well as preparation for the providing the best possible medical care through any emergency responders who were exposed to a multitude of unpredictable exposures. thanks for the extra time. >> thanks.
i now recognize 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 an honor and privilege to be here and address you. there's a lot of things 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? he's wonderful in the answers, but i'm 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 was not for this lady right here, i wouldn't be here at all so to
end this program, people are going to die. it's just -- it's a fact. it's unquestionable. that's what's going to happen. i was born and raised in mr. palone's district, lived there once retired and now i moved a few years ago and live in congressman lance's district. i have both sides of the aisle 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, a no-brainer as far as i'm concerned. as the other -- and the last point to make because i'll try to keep this brief, is i wouldn't be here sitting here if
it wasn't for the doctors and doctor udisan and her other colleagues' knowledge, skills, abilities, research. they have become the absolute experts in what is ailing us and not just me but all the other people that are part of this program. you can't go to your regular dr. they don't have the knowledge. they just don't. they are not bad doctors. there's nothing wrong with it but what happened to us because of the conditions that we were in is -- has become very specific. i didn't have a normal cancer. there's a lot of other people who do not have normal cancer or normal blood diseases and because of their absolute
dedication dedication, they have come up with plans and outlines and that they can treat and get us flu these difficult diseases. that is the most important thing that we have a quality of life to go forward. and i'm going to leave it at that. happy to answer any of your questions. >> chair thanks the gentleman, and now recognizes ms. burnett, five minutes for your opening statement. >> thank you. subcommittee, ranking members, members of the subcommittee on health for inviting me to appear before you today. i live in bayside, new york. i'm 52 years old, a wife, a mother, and grandmother. with me here today are my husband, lee senior and my son. i'm 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 base of an illness developed from the time i served at the world trade center site. i served there for more than three weeks, 23 days in total. the morning of september 11, twup, i was working in brooklyn new york in the gang intelligence division when my offers and i learned of the attacks in new york city. we rushed to lower man hat p, the fastest way possible by boat. when we ri rived the towers collapsed. the air thick with dust and smoke, covered my mouth to breathe. we worked all day well into the night. we evacuated people from the site. we directed them away from the disaster. there was so much dust but i was not giving any pesrotection
for my eyes, throat, our lungs, and i washed it out with a hose. we could not stop doing what we had to do. the first night i finally left the world trade center at 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 with buckets and shoves. if i was not crying by what i saw, tears streamed down my face from burning dust. i spent weeks at the world trade center site, shoveling, clearing debris, searching survivors, and later, body parts. we worked side by side and hand in hand with iron workers, construction workers, firefighters, police officers, all of us searching dust and removing debris together. searching and removing wreckage of the world trade center, working right on top of the burning, smoking 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. it was dangerous. there was never a time when i even thaw about quitting or leaving. i thought of thousands of poor victims. if this work brought a closer end game, we were happy to contribute. i live with the consequences of 9/11 every day. i'm diagnosed with lung disease, more specifically hypersensitivity with fibrosis in the lungs. infla mags in the lungs interferes with breathing and destroys tissues that give oxygen to my blood. lungs are permanently scarred. i can't take stairs without gasping for breath. i start each morning connected to a nebulizer and healing doses
of medications. i'll eventually need a double lung transplant. lung steroid use caused weight gain and the other prescription medications have caused many additional illnesses. i have been diagnosed with diabetes high blood pressure, and arthritis. i have suffered partially detached retinas in both eyes requiring surgery. prior to my world trade center service, i was in top shape no history of lung disease never smoked, always had a physically demanding lifestyle and career. during my time with nypd i worked for five years. these assignments required me to work -- walk four miles a day making arrests in operations and executing search warrants. i have made over 200 arrests in my career and assisted in hundreds more. i've been recognized by the nypd numerous times for excellence in
police duty. i've received several metals from police duty. i was born and raised in brooklyn, new york, playing high school and college basketball. i played on the police league women's team competing across the united states internationally. life has become very different since i became sick. this program saves lives. it's saving my life today. it provides structure in life by coordinating doctors and medications. my family does not have to suffer the financial burden of doctor's visits, copayments, and deductibles and medications. i would also note the health conditions -- many of the colleagues have been diagnosed with cancer, many died of cancer. the amount of dust exposed was unprecedented. we fear cancer and other injuries that arise late after
toxic exposure. recently, more than 60 types of cancers have been identified by medical researchers as being directly related to the toxin ground zero. cancer arrives years later but for these reasons, i urge the committee to approve the legislation before it. thank you. >> chair thanks the gentle lady, and thanks to the witnesses for their testimony. i will begin the questioning by members and recognize myself for that purpose. in your testimony, you talk about the coordination of care that your clinic provides and that you can spend time with your patience. 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 theb6$ right expertise to actually take care of his cancer. where he could get the right readuation radiation, that was a big 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 he had a 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 administrator 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, prompt appointment, so, you know, you 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 next november. that's the next available apointment, but i can assure you, when i call up you'll be in by tuesday. if that answers your question -- >> ha-ha yeah, well, just to follow up with the coordination having time very important for the level of care you give. was it possible to provide a
level of care before congress establish the world trade center health program? >> it was -- 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 frustratingeing because you could find something wrong with a person, and we'd really did not have the resources to make sure they got to see the correct person, and i'm grateful for the funding we have now so that we can do that. >> thank you. mr. howley and ms. burnett, can you talk about your care in the centers of excellence? and in your view, is it better coordinated?
>> i was thinking of a story when you just asked the doctor a question. i am probably one of her original patients going back to the monitor program back in 2003. the first time i went there, my blood pressure was off the chart. my sinuses were completely blown out. i had constant infections. i had acid reflux. she basically refused to let me leave her office unless i went to the doctor to get treated for blood pressure. i'm 6'3", and she's about 5'1", and i believed her that she was not going to let me out of the office. so yeah, there's a big difference as far as -- and she's just wonderful, and i'm sure -- i have not -- i only dealt with one other of the doctors at her office, and i've
never been to any other offices. i can't speak about any of them, be the doctors, you know, are just tremendous and they, as she was saying, when the cancers can't coming back for me and it's reoccurred four times for me, she -- you can now -- she can make the phone calls now and get me to the right, and when she says too, she's not kidding you. >> thank you. would you respond to that, you know, as a patient in the otc health program. are you satisfied with your access, care received, and compare before and after? >> yes, i'm very satisfied with my care because in 2004 i started blacking out as work, and nobody knew why. with regular doctors, i was sent out for different tests. in the program, they send me to one doctor who sends me to another doctor to make sure everything's covered.
they schedule everything for you. 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. the chair recognizes the ranking member mr. green five minutes for questions. >> thank you, mr. chairman. mr. howley from your testimony i understand you saw dr. udisan from the program was established. would you explain what being able to see her at the rutgers center of excellence has meant to you? i know it sounded a little bit from the earlier question. >> that's fine. how do i phrase this? their knowledge that they've acquired because they've seen so many of us when i present the next set of conditions or former set of conditions that i had,
she can tell me, dave, go see dr. x, y and z, and no. dr., a, b, and c because of her knowledge and skill and what she's been able to put together by seeing smm of us, she has that -- that template, those tools in her belt that will send me to the right person. >> do you think you would have been 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 there were four surgeons that were qualified to do what i needed to get done. >> ms. burnett, from your testimony, i understand you received medical monitoring treatment services through m. sinai clinical service of
excellence. can you describe the care received and what it's meant to you? >> the care i received has been excellent. they did an open lung biopsy that determined -- which lung disease i had, and how they were able to treat it and what doctors i needed to see. >> thank you. and could you explain the care you received at mt. sinai, they treat the whole person? >> yes. i have a primary doctor, sending me to doctors for different diseases i have like gird asthma, and one primary doctor coordinates all of that. >> okay. do you think your condition would be worse if you had -- did not have access to the 9/11 health program? >> i believe it would be terribly worse. i had that cough. i was not able to hold a conversation without the program providing me with the
medications that i needed. >> doctor, why do these patients need specialized care provided at the clinical centers of excellence? >> we have people with rare conditions like david that need specialist help. we've been able to use our best university resources that abstain many ab normalityies on things like cat scans to get patients like the gentleman i mentioned to have the cancer removed, but i think really, the number of conditions that we see and the complicated cases that we see so you have one condition that influences another condition that 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 from medications medications. many of the medications, if you take too many precipitate heart disease. i feel like early recognition and treatment of all the conditions correctly create much better outcomes for people. >> it sounds like for so many possible illnesses misdiagnosis would be -- would not be uncommon? >> well, that's correct, and ms. burnett described her sheer number of conditions, and yes that is -- that is the issue because you don't want to -- so you treat one condition really effectively, but you kill a 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 gate keeper type person, i can make sure that all the specialists are talking to each other, and making sure that the total patient is treated eded correctly. dpl >> thank you, mr. chairman, and i think because of the complications and exposure to no telling what that you need to have someone that looks at the whole person and actually treats all of the illnesses you're subject to. thank you, mr. chairman. >> the chair thanks the gentleman. i recognize the gentleman from new jersey, mr. lance, five minutes for questions. >> thank you, mr. chairman. dr. udisan, can you explain in more detail, your center of excellence, 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 consortiums that includes centers at mt. sinai, nyu, stonybrook, nyu, and rut ders. >> mt. sinai in-- >> queens is in nassau as well on the border over there. right. we serve as center of excellence in new jersey. what makes us different our physicians are board certified
in primary care specialties, internal medicine and occupational medicine. double board certify edied, all physicians had two board certifications. as i said, rutgers has and environmental center of excellence in our same building and we do extensive work on exposure and health effects and that happens besides that's the rest of the faculty that i work with in rutgers so we have a lot of experience with exposure and illness. we have pulmonary doctor that see us, and others who come in the practice to see patients, and across the street, we have
our surgeons and a number of other specialists that we need in the rutgers center. by the way, we change our name to rutgers. we need to get that on the record that we changed from undny to rutgers. in any event -- >> because our state legislature permitted the combination of the university of medicine and dennist dentist dentistry and rutgers. >> right. but 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 that people actually know how to use their medications. this is really very important that we have people making sure that not only medication are used, but used correctly, then i have -- i mentioned my mental health core my administrative core which tracy heads 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 that we can to keep costs down using generic drugs, and that all our proprior tors 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 are performing these audits because i want to make sure that we have funding to treat our patients presumably you guys are going to unanimously confirm this bill, and i want the money to be there to treat our patients. >> thank you very much, doctor, and to mr. howley, ms. burnett thank you for your superb public
service, and we certainly 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 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. >> gentlemen seeks unanimous consent to put in the record without objection, so ordered. >> thank you. and i yield back seven seconds. >> chair, thank you gentlemen. recognizes the ranking member mr. palone, five minutes for questioning. >> thank you, chairman. doctor, i wanted to get into try to have you explain, if you will, the importance of not only
the rutgers center but the center centers in regard to the research and the research component and i want to 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 the uniqueness of the center makes that possible. could you just kind of describe how the rutgers centers is involved into research in the centers and how that is improving our treatment of the wtc health conditions and the benefit of that research. >> and to answering the rutgers only research and the nyu research is we have a lot of sleep apnea experts in those two
enters -- 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. dr. sund rum one of the experts presented this at the recent 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. and so because of that, because of that association between environmental exposures and inflammation, we've been able to
find people a lot sooner, get them treated and for people that think about sleep apnea and the environment, people traditionally sleep apnea was thought of something that you had to bee normously obese to get -- enormously obese to get and those not quite playing point guard but not in good shape with sleep apnea and we are able to -- but because of our occupational expertise, sleep apnea is a very serious condition. there is somebody who died recently, a celebrity on the new jersey turnpike because a bus driver fell asleep and a lot of our patients have to drive commercial vehicles and operate planes and operate the subway operate all kinds of heavy equipment and it is really good
that we're able to treat them and keep them safe and awake. and i feel like that is 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 to, if you could get across is how we can expect an increase among the population that -- of these 9/11 related conditions. as time goes on, we find more canes, more disorder -- cancers more disorders as people get older, that didn't exist before and now we are finding through your research and others in these centers that rerelated to -- related to 9/11 that we didn't know about before. >> so i want to say that certain kind of magig nancy, him ano
poetic cancers have very short times and you would see that a couple of years after exposure to toxins but other tommins like asbestos have longer periods and they might be seen later on and at a different time. and if i could use a few minutes to answer dr. howard you asked 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 under treated by local providers for various cancers for various severe lung conditions like pulmonary fibrosis and even though that wasn't exactly the question you asked, i do want to say that we have been able to improve the
health care by tuning up and getting better diagnostic services to our patients then they were able to get from some of the local people. >> thank you very much. thank you, mr. chairman. >> chair thanks the gentleman. that con deludes the -- concludes the questions of the members. they will have follow-up questions in writing. we'll submit those to you, ask that you please respond properly. i would remindfk#y members they have ten business days to submit questions for the record and they should submit their questions by the close of business on thursday june 25th. thank you very much for sharing your personal experience and your excellent testimony. the committee will take up this legislation, i assure you, and act on it and you've performed a public service by being here today. thank you very much. and without objection, the sub-committee is adjourned.
the road to the white house is about to get more crowded following a listening tour of the nation, hillary clinton will officially kick off her campaign tomorrow in north korea city can you see that live at 11:00 a.m. eastern on c-span. and coming up on monday another hat will be tossed into the ring when jeb bush will officially announce his entry into the race from miami. we'll have that for you live starting at 3:00 p.m. eastern here on c-span 3. on tuesday it is dond trump's turn. le announce his plans on tuesday at 11:00 a.m. at new york city and you can watch that live online at c-span.org. here are some of the featured program this is weekend on the c-span network. on book tv on c-span 2, on saturday night 10:00 p.m.
eastern, kirsten powers said that although they were once its champion champions, liberals are against tolerance and free supreme. the former director of the cia, michael dural the war on terror and the fight against al qaeda and isis. and on american history tv on c-span 3, author kevin mcmann on the nixon's appointments and the impact he had on the court and american politics and on sunday night at 6:00, we visit the national museum of american history to visit the newly restored murals depicted the ammistad slave revolt and the founding of talladega college. get the complete schedule at c-span.org. this summer book tv will cover book festivals from around the country and top nonfiction
authors and books. near the end of june watch for the roosevelt reading festival from the presidential library. in the middle of july we're live at the harlem book flare with author interviews and panel discussions. and at the beginning of september we are live from the nation's capitol for the national book festival. and that is a few of the event this is year on c-span's book tv. housing andush ban development secretary julian castro testified before the house committee yesterday on a number of topics related to the housing agenda. secretary updated the committee on the priorities and programs, including what they are doing to ensure responsible buyers have access to credit. hud is celebrating the 50th anniversary this year. jeb hencer ling chairs the committee and markine waters is the ranking member. this portion is about 90
minutes. >> the committee will come to order without objection. >> the chair is authorized to declare a recess of the committee at any time. this hearing is entitled the future of housing in america, oversight of the department of housing and urban development. i now recognize myself for three minutes to give an opening statement. as we approach the 50th anniversary of the founding of the department of house and urban development, one can't help the department, one can't help but be struck by president johnson's boldness as he launched the great society with these words. "we have declared unconditional war on poverty. our objective is total victory." hud was established one year