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tv   Politics Public Policy Today  CSPAN  June 26, 2015 5:00pm-7:01pm EDT

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make the connection between exposure and illness that the zag rogua act requires. second, our members are receiving health care that cannot be provided or only provided with great difficulty by other types of insurance plans. for example, health insurance plans do not routinely cover work-related health conditions, leaving such coverage to workers compensation insurance. however, workers compensation insurance presents coverage challenges to members because their 9/11 health conditions often first manifest after 9/11 many years later beyond the statute of limitations found in most state worker compensation laws. the world trade center health program serves a vital role in overcoming the difficulties that members might other wide experience in its absence. without the program, 9/11
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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 unified cohort, the program greatly aids not only the individual members but also the national understanding of the long-term health effects of 9/11, including its effects on children. the program helps us better prepare for the medical needs arising from large-scale long-duration disasters that might not hopefully occur ever in the future. thank you for the opportunity to testify and i'm happy to answer any questions you may have. >> chairman thanks the gentlemen and i'll begin the questioning and recognize myself five minutes for that purpose. dr. howard would you continue to elaborate a little bit on the history of the world trade center health program how it
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came to be and how it has changed over time? >> thank you. the program started as a immediate response to what doctors were seeing, especially with a new york city fire department in what was called at that time, a world trade center cough. and those doctors and others that were recruited to the effort began to observe that individuals who were responding were becoming ill from inhalation of the dust and the toxins contained in the dust. so immediately through fema appropriations cdc and then the national institute for occupational safety and health was able to offer grants and cooperative agreements so the doctors could begin now many, many years later the first work in trying to articulate, characterize the issues that responders were facing and
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survivors. >> another question. what are the consequences of letting the world trade center health program expire in september of 2015. how would it effect the operation of centers of excellence across the country and the patients who use these facilities and services? >> certainly any of us that receive health care from a particular health plan, if we are notified that plan no longer exists it creates great stress in our life. we have to adjust to new providers and other changes. our efforts to help those who may be part of our discontinued program, let's hope that does not happen would have to receive other providers of care and it would be our responsibility to make sure they did. the centers of excellence would not operate any more as a coordinated care operation for responders and survivors.
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>> thank you. now we're aware that special master sheila burn balm administers the victim compensation fund which is housed at the department of justice. is there coordination between the operations of the victims compensation fund and the world trade center health program? >> yes, sir, there is. we have a data sharing and medical review agreements with the victims compensation fund. we regularly meet with the staff. our staff is imbedded with their staff to assist in the medical review. the victims compensation fund has adopted our program requirements for their medical review. to date we have provided information to them on 18,262 of their vcv claimants. we continue to work closely with
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the victims compensation fund. >> how much higher is the federal employees compensation act, feca rate compared to kmard parts a. and b. reimbursements for hospitals? >> the statute -- the zadroga act sets the reimbursement rate according to the workers compensation rates of the federal government the fecka rates. medicare rates are lower but maybe by 10-20% lower. so they are a -- the feca rates are higher and our reimbursement rates for providers are higher than medicare. >> doctor howard, i can imagine it is logistical challenge to provide care for the responders and survivors who are scattered all across the country. what can you do to ensure that a
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physician in another part of the country seeing only a few world trade center patients benefits from the clinical experience of the physicians in the new york metropolitan region who have more experience treating these wtc related health conditions? >> the nationwide provider network that we have, which is currently seeing about 8287 individuals, we have total coordination with that provider network. on the one hand all of those individuals who do monitoring for our survivors and responders that are in the nationwide program are trained, occupationally trained physicians so they are equivalent to the physicians that we have in the centers of
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excellence in new york and new jersey. 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. >> good. thank you very much. my time is expired. chair recognized the ranking member of the sub-committee mr. green for five minutes. >> dr. howard prior to the passage of the james zadroga 9/11 health compensation act of 2010 you administers the krch dc
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grant that was for 9/11 survivors and responders. that program is funded through discretionary dollars and there was always uncertainty about what amount of discretionary funding would be appropriated for the grant program. doctor howard, can you describe how the creation of the world trade center health care program through the james zadroga act has improved the ability to ensure responder and survivors get the quality services they need. >> thank you. i would respond in two ways. one, on behalf of the members, it is very stressful to constantly be told on a year by year basis that your care may go away your doctor and the institution, the facility that you go to may change. so it created a pervasive sense of stress. mind you, in our population we have many thousands of individuals who suffer from ptsd and some highly resistant ptsd
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and i'm sure that if they were here with me they would say how stressful year by year funding is to the program. from the administrative perspective, it is very difficult. because we were always up to the last minute thinking should we start preparing for the program not to be funded, and that was certainly something we did not want to happen but it requires a long process of preparation so we were never sure about that. >> so the dedicated mandatory funding helps you not only plan better but also the reaction from the patients? >> it is like night and day. when the zadroga act passed all of us, members and those of us administrating the program breathed a sigh of relief that we had five years. we never had that before. >> the james zadroga compensation reauthorization would permanently extend the program. could you explain how a
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permanent extension of the program would ensure that responders and survivors have that peace of mind. you talk about the monitoring and treatment they continue to rely on will continue to meet their needs. >> well as i say the assurance of having the same provider especially for the patients that suffer from very serious mental and physical conditions is a peace of mind that can only be bought from mandatory funding without a end date. for us in the program it really helps us do long-term strategic planning. it is very hard to do contracts when you can only provide a year or two or five years. but being able to look beyond the five year horizon is helpful for the firsty and the integrity of the program. >> it seems the patients enjoy a great deal of understanding from the providers and the doctors and the providers in the
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program. how do you think this effects the patient outcomes. >> without doubt, the providers that i first met in august of 2002, when i became virs 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 the continuing the program is so important to ensuring the same level of knowledge and expertise. >> very definitely. our providers have a wealth of clinical information that other providers would take them years to develop. >> okay. thank you mr. chairman.
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i yield back my time. >> chair thanks the gentlemen. now recognizing the gentleman from kentucky mr. guthy, five minutes for questions. >> thank you mr. chairman and thank you dr. howard for being here and i spent six years in college in my life in metro new york and one of my favorite things to do back when i was under grad was -- the uso and spent the time at uso off of times square and there was uniformed public servants there and enjoy talking to -- i'm a talker and i would engage with them and what a great service that people pull. and you hit on something i want going to -- i wasn't going to go this direction but it opened my eyes and i will emphasize and go 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, we have assistant in place, disability insurance and so forth. and so i think a lot of us that
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aren't in new york continuously and the surrounding areas like my friends here, are the programs already in place. so what you hit on today is the first time i thought of it, i know it is unique in the massness of it, but why is it unique in the terms of other injuries that people might receive that requires its own system other than just the volume. so could you hit the challenges because you've opened my eyes to some things today, the challenges that you've already said but emphasize why this is completely unique that it needs its own program and why the diseases are different if you are not in a normal -- i don't know if normal is the right word or a standard situation that firefighters or other people would be in. >> be happy to. and best way to answer that question is by looking at some of the findings that we have gotten from the investment that the act has allowed us to make in research.
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looking at this population and the conditions. and i'll just mention a few issues. on the mental health issue, we have seen delayed on set of ptsd. now that is not normally seen in other types of situations. that is something that we're seeing in this population. we've already seen a worstening of ptsd, despite conventional treatments. so that is new in this population. in terms of respiratory disease we're seeing a on set of obstructive airways disease beyond five years after exposure. we're also seeing bronchial hyper reactivity persist over a decade and that is something new. and in terms of asthma, we have seen patients in our program who have asthma who have lost full time employment because of their
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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 or other things. and you said there was 71,000 people in the program. what is the criteria. did you have to be on site for so many days or did you have to be in the rubble or blocks away or what is the situation? >> the simple answer is the zadroga act is highly specific about the criteria for eligibility in the program and it includes -- let's say for new york city police officers, location, the duration of their exposure, and other factors. so eligibility criteria are pretty well spelled out in the
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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 will in the act that has to do with survivors, there are five levels of eligibility of requirements for survivors. so if someone comes to the program and wants to be a member, the first step is filling out an application in which they -- a lengthy application, unfortunately, i might add, in which all of that information is solicited so we can establish whether or not their experience meets the eligibility requirements of the act. >> and i think some concerns is debated before and i want to emphasize this, and is it anywhere in terms of people getting the health care they deserve and i remember asking the question why such a separate and unique program and you've given me some good things
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to think about so i thank you very much. i appreciate it and i yield back. >> sir thank yous the gentleman and recognize ranking member plume for five minutes of questions. >> dr. howard, the world trade center requires on world trade centers of excellence to provide the monitoring and medical care for the program and they employee clinitians with deep experience in treating the unique physical and mental health needs of 9/11 responders and i know you talked about this and i'm following up on what mr. guthrie said. and know patients in the new york metropolitan area continue to see gem physicians but obtain monitoring and treatment for conditions at these centers and i also understand that if somebody is another part of the country they can go to a network of doctors provided through the program. but some of them also come to the certainties. i know at the new jersey centers
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people from all over the country will travel because of the expertise that exists. so if you could comment on the treatment benefits of the people using these centers rather than the personal physicians for 9/11 related health conditions or even traveling when they can see someone that 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 physicians in terms of their expertise as you said. occupational and environmental physicians who are schooled in that particular sub specialty know how to connect an exposure with a health condition. when i went to medical school i did not learn that. i learned how to take care of a health condition i didn't learn ho go back and do an extensive history and try to figure out what was your exposure and was that related to this health condition that i see. that is a specialty of occupational and environmental medicine where we try to
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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 capabilities would not be able to liz in to the patients' symptoms and be able to say, yes, your exposure and 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. have there been problems with misdiagnosis or miss proper treatment of 9/11 health conditions when individuals have relied on personal physicians in. >> not that i'm aware of. within the program, of course, we have quality assurance, where we look at all of the care that is given. >> okay. and can you just discuss briefly how the clinical centers of excellence coordinated the care
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delivers to responders and survivors with care delivered by the personal medical providers outside of the centers. >> sure. as many of you know the world trade center is a hybrid program. it is not your normal health plan where you go in and everything that you may complain about relative to your body, a physician takes care of. many things don't cover and so you have to see your personal physician. that coordination is done in the cce's so if they see a condition that we do not cover, then appropriate referral is made. >> okay. now let me just -- i'm going to try to summarize the last question. my concern obviously is that i don't want the program terminated before we have an opportunity to reauthorize it and that is why we are having this hearing and trying to move quickly. but in preparation, if reauthorization legislation is not signed into law by september of next year, the program is
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terminated and in preparation for termination or possible termination, i understand that hhs has certain notice requirements you have to follow. can you just tell us what you have to do, obviously this isn't what we want to happen but i want to stress there is always that danger. >> well it would be a nightmare for me personally and a nightmare for our members and a nightmare for the cce physicians. you cannot abandon a patient ever as a care provider. so we must ensure that that patient is taken care of somewhere. and finding a place for each of our 71,942 members would be a gargantuan task. >> and the notice requirements, when does that start? >> we have to inform our patients ahead of time that this may happen, even though we may not be sure it is happening and certainly when it happens and all of the efforts that we can make to help them support their
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efforts in finding additional help. >> when does that process begin? do you have a notice requirement? >> the 90 day time limit is sort of an unwritten notice requirement now. it can vary state by state because these are often state laws. but we have to go back and look -- since we have members from every state, we would have to look at every state's aband onment requirements. >> all right. thank you very much. >> now recognize the gentleman from kentucky, mr. whitfield five minutes for questions. >> thank you very much and dr. howard thank you for being with us this morning. i want to just follow up briefly. when we think about health care systems and frequently people all work with some company that provides health care or medicaid, you have to be over a certain age medicaid, income below, or try-care and here
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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 and i think you indicated there are 71,000 plus members involved in this program. and is it still eligible -- if i'm someone that worked there during that time, would i still be able to enroll today? if i'm not enrolled right now. >> yes, sir, you would be. and we hope that anyone listening not enrolled in our program who may be eligible would call our eligibility line and sign up for our program. >> okay. and i won't get into the details, but the criteria for eligibility, i'm assuming you had to be have been x days and is that correct. >> yes. there are detailed eligibility
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requirements spelled out in the act itself. >> and does your office make the decision on whether or not a person is eligible or not? >> yes, sir. >> now of the patients that you are caring for right now, what percent of them would you say or maybe you don't have this information, had an insurance program already, they were already covered? >> well first of all even if you had health insurance, as a responder, you would not be able to use that insurance because health insurance does not cover work-related issues. forirrin sfans if you went in for an mri or ct scan at the bottom of the form it will say if this is a result of a auto or work accident and they will not pay for it. they will refer you to someone else. for survivors, health insurance could be an issue and we recoup
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as much as we can from the health insurer. >> what percent would be covered under workers compensation program? >> theoretically work-related illnesses and injuries would all be covered. but there are great difficulties for responders in accessing worker compensation benefits because oftentimes there are conditions. not the original conditions where on the event someone had an acute injury and it happened within a short period of time. but some of our diseases in our program, the on set is years later and a lot of statutes draw a line andsy no that is beyond our statute of limitations and we will not cover something that started five years later. so many of our members are in that situation. >> so would to be unusual that workers' comp may pick up part of it and then this program would pick up sort of playing a
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supplemental role. >> it is not unusual. many of our members have had worker compensation benefits given and we're in the process of recouping from workers compensation. but it is not the majority or even near the majority of our members. >> some people have indicated early on, and i remember when there was first a discussion about this this was a unique program but i know there is health programs in effect for employees at savannah river, paducah, oakridge and so forth, which is kind of similar to this, because those workers were exposed to certain elements, many of them were not aware of, and they came down with a lot of different cancers. and so those programs are similar to this program, would you say? >> yes, sir. and in fact, we administer the energy employees occupational
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illness compensation program together with the department of labor and the department of energy. it is a program that bears a lot of similarities to our program at the world trade center. >> and so if you worked at the world trade center and you're covered and you have one of say 12 or 14 illnesses that you all have set out is there a presumption that since you were there and exposed that you would be covered under this program? >> not a presumption. a physician, not in the -- in the administration of the program, but in our centers of excellence, would examine you, take your history and make the connection between the exposure history that you give that physician, and that health condition. and they and they alone say i think the two are connects. >> well thank you very much for the great job you do. >> chair thank yous the gentleman. recognizes the gentleman from
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oregon, mr. schrader, five minutes for questions. >> my questions have been answered mr. chairman thank you. >> then the chair recognizes gentle lady miss caster, five minutes for questions. >> i want to thank you mr. chairman for calling this hearing and i would like to thank all of the first responders and survivors and the medical professionals who take care of them who traveled here to capitol hill to encourage the congress to provide continuity and center in the world trade center health program. would you like to thank my colleagues especially from new jersey and new york congressman palone and congress lance. you all have been champions on this committee for this endeavor along with congresswoman clark and congresswoman maloney. i think congresswoman king was
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still here and the entire new york delegation especially. i strongly support the james zadroga 9/11 health and compensation reauthorization act because it will provide that important continuity of care from this point forward. and it is interesting to see the list and understand there are first responders and survivors from the terrorist attacks all across america now. and florida comes in right behind new york and new jersey. so it will be very important and i think that the folks that i represent back home will be strongly in support of taking care of their neighbors who were there on september 11th and the weeks and months afterwards. it is vital that we continue this specialized care for all of
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our neighbors and the brave folks who were there on september 11th. so doctor howard thank you for being here today. one of the important parts of the james zadroga health initiative that gets ore looked is the funding provided for research into 9/11 related health conditions. between fiscal year 2011 and 2014 the program funded 35 projects to investigate questions about 9/11 related to physical, and mental health conditions. could you provide examples of the research funded by the zadroga act. >> be happy to. we're very grateful for the original drafters of the legislation to provide money for research into the health conditions that our members face. and as i mentioned before we've already learned quite a bit from that research. and i'd like to highlight just one aspect of it. in addition to mental health andress and cardiovascular and
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our cancer research in autoimmune diseases and others, is the research we've done on individuals who were children at the time of 2001 attacks. there were a number of -- of elementary schools and some that were in high schools that were immediately impacted. and we have a number of those projects going on now. about seven that are funded. and we're learning the effects on developmental issues in the children's population. to date, we've funded $88.5 million worth of research. and we have a significant body of research that is published in peer review journals. the world trade center registry alone has published about 60 paper and our various clinical
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researchers have published the other papers. our pivotal papers in cancer, autoimmune diseases asthma and other respiratory disorders have allowed us to provide better care more focused care for our members. >> are these results of the research are they disseminated in an organized way to the providers. >> yes. we have news litters that highlights various finding from research so they know. and all of the papers are published on the world trade center website and these are all peer reviewed publications so they appear in the science journals and i'm happy to say that the new york media picks up on those papers and reports them probably more effectively and more widely than we can on our website. >> so if the james zadroga act is not reauthorized, will the research efforts come to an end
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and explain to me why that would be harmful. >> they would cease altogether and we would lose what i think would be one of the most advantaged of the program to our society, looking at the long-term health effects from 9/11. >> okay. and you testified earlier that health conditions often manifest themselves years later. the zadroga act provided funding for out reach efforts to individuals who may be eligible. we're now several years into the existence of the program and you have successfully enrolled more than 71,000 responders and survivors and it aseems in addition to out reach, the continuity of care and retention of members will be important to protecting the health moving forward. that's why the reauthorization act here clarifies that funding may be used for continuity of
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care and retention. give me your opinion on why efforts on continuity of care and retention of members is important moving forward. >> as you say, our program over all sincin sent of july of 2011 with the zadroga 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 remain in our program. and every health plan loses members because we do not go and do outreach to retain them. so that's -- on balance now after our first five years, we hope to emphasize in what we hope is our second phase that retention of the patient population is as important as the original recruitment. >> and how do you propose to do that for first responders and survivors outside of the new
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york-new jersey area, say in the state of florida. >> first of all, we do things as a team. we sit down with our representatives from survivors and responders we have a responder steering committee which is very active, meets every month and we have a survivor steering committee that is very active and meets every month. all of our ideas suggestions, we go to them and say how are we going to do this and together as a group we figure out how to do it. there are in modalities we could use and we are told by our members many times what is the best job. >> thank you very much. >> now recognizes the gentleman from texas, dr. burgess five minutes for questions. >> thank you mr. chairman. thank you for having the hearing, dr. howard and thank you for being here today and to our witnesses on the second panel, thank you for your participation and the people here in testament to the work
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that you've done. i also feel obligated to recognize the work of one of our colleagues 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 interest that i did become an early supporter of representative king's work on this. and in fact i was the run who ran the bill on the floor in the waning days of the 111th congress in the late lame duck session in december when the bill did finally pass on the floor of the house. but dr. howard, i'm interested in -- you said in your testimony that you provided for us today that certain times of cancer were added to the list of health conditions covered under this act. could you share with us -- what those cancers -- what type of cancers those were -- are? >> yes.
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currently covered in the program are every type of answer. it is a short way to approach this. every type of cancer except uterine cancer. >> but are there those more -- if you were to pick the top three malignancies, what would those be? >> i think if you looked at our 4,000 or so cases right now probably the top ones would be thyroid cancer. there are five common cancers that americans get. skin being the one. that is our top cancer. there is breast cancer. that is also a top cancer for us. there is colon cancer which is a top cancer for us. think roid cancer is another cancer for us. but we've seen a lot of very common cancers like that and we've also seen some very rare type cancers and oftentimes from
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epideemia logical basis the appearance of rare cancers is helpful in terms of doing research on a population to figure out what the exposures are, causing rare cancers. >> sure. that speaks then to also the value of having people that have expertise in treating the types of injuries encountered because an uncommon cancer can be a difficult diagnosis to which to arrive. >> exactly. and if this cohort were distributed, we would not be able to count those. it would be very hard to find all of those rare cancers if the patients were not seen in our clint cal centers and rather 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. and just as far as a brief comment if you will on the observe versus the expected cancer rates and the population
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that you're following, is this number of -- i guess i clal kate it to be 6% based on the number of patients you are following and the cancers you reported, how does that stack up to the general population? >> well that comparison i'm afraid we can't do at this time. that would be something that we would have to wait and see what our researchers could come up in giving us that kind of number. we're now looking at in the fire department of new york city is doing research using a population to compare the world trade center firefighters to another cohort that was assembled by the institute of firefighters not involved in world trade center, so we hoped that line of research to answer your question some day. >> to give a better control and age match for people in similar occupations. >> yes, sir. >> just switching gears a little bit and you mentioned also in
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your testimony that you're trying to aid not just the individual members but help grow the body of evidence an the body of information so that you can help in other situations. are you going to be able to provide feedback to municipalities and boroughs as to the type of workers compensation coverage that may be provided to members of the fire fighting community or the type of health insurance that is provided, some of the short comings you mentioned were within the workers compensation system and are there lessons that you learned that can be extrapolated to other communities? >> certainly. and i think new york state itself the legislation and the governor have already responded to this issue significantly by providing a mechanism by which responders -- survivors can sign up to a program.
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they don't have to actually make a claim but they can register and then if they should develop a condition later on that their claim would not be beyond the statute of limitations. so other states have also looked at that and we hope that people will learn, especially from the long-duration disasters. >> thank you mr. chairman, i yield back. >> now recognize the gentle lady from illinois mcschakowsky for five minutes. >> change you, mr. chairman. i too would like to thank all of the first responders the survivors, those who treat them for coming here today for the first responders and the survivors, i'm sure in addition to some health conditions that may be more visible, that the trauma of the incident and the loss of friends co-workers, family, is something that lingers on forever, really.
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in illinois dr. howard there are 13 first responders and between 1-9 survivors the way the data is kept it is between one and nine enrolled in the world trade center health program. so clearly there is no concentration of those individuals in any kind of program of nationwide providers. so i imagine there is physicians that have one or two, et cetera. so how do you maintain that cohesiveness of that network. >> i think that is a very good question. and i think there is a couple of ways that we do that. first of all our nationwide provider network is headed by very capable physician who is a part of our new york-based centers, new york and new jersey based centers of clint cal excellence so he participates in
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all of our meetings and is a great educator and teacher for the cad ray of physicians that do monitoring of that population, as you point out, a physician may have only one or two. those physicians themselves are occupationally trained so they have the same kind of training to connect exposure and health conditions as similarly situated situatedsituated doctors at our clinical centers. and med scape is helping us put together constant training so to speak, 24/7 you can go to their website and get information about the latest findings about the program that may influence your practice. so even though we have a distributive network and those in the nationwide provider network may have one or two patients they seem, we want them to be as similarly situated as
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those in the clinics. >> so my understanding is there is 71,000 people approximately in the program and then it says in a fact sheet that i have that more than 30,000 responders and su viefrs have at least one world trade center related health condition. so there are some people in the program -- i gather more than half that are simply -- but not simply, but being monitored is that the difference in number? >> yes. we offer monitoring and treatment. so if you are in the monitoring program and you do not have a health condition that is included for coverage in our program, then you come on a periodic basis for monitoring so you are not in treatment. there is no condition that the world trade center physician has connected to your exposure. >> but the monitoring is done
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within the network and there is not an additional cost to that individual for the monitoring. >> no. our members bear no costs. >> so the population that you serve includes some number of families of the -- or spouses of firefighters. some are in that program. survivors that may be workers in the area, residents students day care, participants, et cetera. i'm wondering what the break down is between first responders and then survivors? >> in terms of enrolled members in our program? so currently, total enrollment of the population as you say is 71,942. general responders which would be police construction workers,
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volunteers that came from all over -- >> firefighters -- >> is about 38, 953. our fire department members are 16,569 which leaved 8,133 survivors in that 71000. >> does anybody leave the program? aside from the issue of reenrollment? do they have to reenroll every year? >> i'm sorry. >> do they have to reenroll? >> no. you are enrolled once in the program. >> does anybody leave? >> i hope not. but i do not know that for a fact. we have members who have passed away. >> certainly. >> but leaving they may go to -- as has been said, by representative palone, they may go to their private physician to obtain health care for other nonrelated conditions. >> now recognize the gentleman from new jersey mr. lance five minutes for questions.
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>> thank you, mr. chairman. i don't have any questions. but i want to thank you for what you're doing dr. howard. i want to thank congressman palone who has worked on this issue over the course of the last more than a decade and all of the members of the congress who recognize the importance of reauthorization of this legislation. this is a bittersweet hearing for me. new jersey lost more than 700 residents. my son was playing freshman high school football and he had a teammate whose father didn't come home. i lost a princeton classmate in the south tower and my story is similar to the stories of many.
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i think the best speech that the younger president bush ever delivered was on sent 14th at the national cathedral where he said this world god creates is of moral describe. grief and hatred and tragedy are only for a good time. goodness and remembrance and love have no end and he concluded by paraphrasing st. paul to the romans, that no evil can separate us from god's love. what you have done is based on goodness remembrance and love and that is special true of the first responders. and i thank all of the first responders and i'm sure this legislation will pass unanimously here in the full committee and on the floor of the house. mr. chairman i yield back the balance of my time. >> chair thanks the gentleman. now recognize the gentleman from new york mr. engel, five minutes for questions. >> thank you very much mr. chair.
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and i too none of us that represent new york or new jersey, and the surrounding area that wasn't deeply effected. there are 1851 people in my district who are program beneficiaries of all you do doctor howard so we are very appreciative of it. you've answered some of my questions but i want to try to bring out certain other things. many of us in the aftermath mr. lance just mentioned the friday after the tuesday of the attacks, if of us in the delegation went to the site of the attacks. it was surreal you just scratched your head and you couldn't believe you were really -- it was like a nightmare, you couldn't believe you were really living it and then you realized every few seconds this is real. and so we walked around, other people walked around, we really
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weren't wearing the masks. they did give us masks but didn't really make it seem as if that was that important. so i bet a lot more people got exposure. i mean 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 illnesses are result of exposure from the world trade center site? >> it is difficult. it's difficult for any of us to recall exact details of what we did a month ago, a year ago, let alone this many years ago. for new members coming in our program, a lot of my questions that we ask about the exposure, they are difficult to answer. recall is imperfect in all of us. but we take that into consideration in terms of the
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questions we asked them and the answers they give us. >> first of all, doctor, thank you for the great work you do. really great work. it makes me proud to have been an original co-sponsor of this legislation. i think in all the years in congress, i never saw our delegations more united on one thing, particularly the new york delegation. since the program has been continuing, and, obviously, when things continue, you see what works, what doesn't work, you make adjustments, what would you change in the program? what have been some of the things that you have found difficulty with and perhaps we should consider modifying or changing to make 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
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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. we're extremely happy to have this authorizing outline for us. >> how much flexibility exists with regard to the world trade center health program's eligibility requirements? for example, if someone meets nine out of ten benchmarks, but desperately in need of care, can exceptions be made to ensure 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
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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 program. >> in your written testimony you noted your testimony, you know the work about the program work has been done to understand the impact on 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 adolescents. can you talk about that? >> we are privileged to have a number of researchers in new york interested in this area, pediatric research for 9/11. we have seven projects funded in the area. they have not been completed as yet, so we're looking forward to those findings. i can't report today about what those studies are showing, but it's important that we have them, and they continue, and
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we're very privileged to have a very -- a couple of very good researchers working on them. >> thank you, doctor, and, again, thank you for all you do, and we're really very, very grateful to you. it affects those of us in the new york area every single day, and our constituents are grateful. thank you. >> chair thanks the gentleman. i understand you don't have questions. the chair recognizes ms. brooks for five minutes. >> 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
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indiana 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 and continued to operate around the clock with all of their brothers and sisters in new york. there was a story several years ago about an indianapolis fireman and member of task force one, charlie, who was deployed, and he said in that tv story, he said, and i quote, he got a little of that world trade center cough from the mix of the fumes, but he said he would
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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 citizens. i thank you and all the men and 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 to the program? what are your greatest challenges? you answered incredibly well, so many questions posed to you, but what would you say are the greatest challenges facing the program that we must reauthorize? how do you plan to respond to those programs? 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
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program. >> and the manner in which you plan to grow the program, how do you plan to do that? >> i think, you know, one of the issues that we faced in the program, and i think i can speak for all of our clinical centers of excellence directors and our national nationwide provider network is when the bill passed, the president signed it on january 3rd 2011 we had to be up and running july 2011. it was a very short implementation time. by a lot of work, by a lot of people, we were able to open our doors on july 1st 2011. but i think what we did over the last five years and what we hope
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to continue to do is the quality improvement of services we offer, our pharmacy benefit plan, for instance, and other support for members, we want to receive their input so we can continue to improve that program. >> thank you, thank you for your service, i yield back. >> i recognize the gentleman from new york, mr. collins, five minutes for questions. >> thank you, mr. chairman, and i, too, want to recognize all our first responders here. i think any time you come as you have, it just helps members of congress in what we know will be a bipartisan support as previously stated, unanimously pass this reauthorization. but first of all, mr. chairman, i want unanimous consent to enter into a record a statement from representative dan donovan who represents stanten island and portion of brooklyn. >> without objection, so ordered. >> and i'd also like to recognize representative peter king that's with me today and thank mr. -- or dr. howard for
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all you've done. you have pretty much i think, answered most of our questions, and i believe probably most if not all of our volunteer fire departments, we have mostly volunteer and we have one paid fire department in my district and they sent individuals down to ground zero, and that's what firefighters do, first responders, and it's a community of brotherhood, and i am happy to have learned more today about how those individuals are more than likely in your program being monitored, and i think again in a bipartisan way we are with you and you are doing great work and i don't believe you are going to have to lose sleep about shutting this program down. with that, mr. chairman i would like to yield the remainder of my time to representative king if he has any comments he may have.
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>> i thank you for the opportunity to sit 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 in congress than this 9/11 act. i added 150 districts, and every day, rare lung diseases, respiratory illnesses, blood cancers, so this is something that's absolutely necessary to continue, and i know that people may find -- 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, and it provides a need, which is a lasting need, absolutely essential to go forward, and i thank all the men and women here today, first ponders, nypd, construction contractors, i saw one before, certainly people residents of the area, and, really, everyone who answered the call that day, they did what they had to do, and those suffering these illnesses,
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people in the prime of life who have, again, lost their jobs, have these debilitating illnesses that changed their lives all because they did what had to be done. again, i thank the chairman for holding this hearing. i thank the committee for taking the issue up. i thank you all for being here and thank mr. collins for his time and i yield back to you, mr. collins. thank you. >> thank you. i recognize the gentle lady from north carolina. >> thank you, mr. chairman. thank you, dr. howard, for being with us, and i, too, want to thank all of the first responders who are here today. you know, a very emotional sub committee hearing, so i will try to stick to the information and get into some of the these questions. along the lines of where we are today, and i know that you have already stated, dr. howard, that as the number of affected first responders have come forward,
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those who have been determined to have cancer, how many are in existence right now? how many are with us? what number do you have of potentially affected patients who have a diagnosis of cancer? >> well, right now, we have about 3400 cases of cancer, individual cases of cancer. some of those cases may represent an individual that may have more than one cancer, but generally speaking, that is the number of members that we have who we're -- who we certified with cancer. >> now, as far as the certification process, i'm just curious as to how you determine approval or denial, and, you know, do you have numbers that play out as far as the possibility of being approved or denied?
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>> sure. let me just briefly explain the process. the physician who is seeing the patient makes the connection between their exposure and the health condition, in this case, cancer. they can say it's caused by or contributed to or aggravated by their exposure. that's the determination made by -- >> i see. >> we don't make it in the program. that's an independent view that the physician has, then they submit it to us, and we make sure that all of the supporting information is there, and 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 sure, including the determining physician and us that this is a case to be certified. certification, then means that
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you get your insurance covered for health care. >> uh-huh. having the concentration on cancer leads me to the next question which is do you anticipate adding other possible diseases outside of the cancer realm? >> well, we've received to date seven petitions for requests adding conditions. two of those were cancer. the original cancer petition that chairman pits referred to, 001, and then soon after that, we had a petition with regard to prostate cancer, and then five others. with the five others, we did not find specific scientific evidence to support their addition. we get quite a few requests for adding conditions. it's hard to estimate what conditions we would add in the future. we evaluate each of those requests on their scientific basis. >> and then in regard to autoimmune diseases, you determined those would not be identified or added? >> right. >> can you expand on that? >> right.
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we received a petition, our last petition, to add a large number of auto immune diseases to our statutory list. we reviewed all the information including the very excellent study that recently had stimulated that petition by fdny, and we found that it was insufficient at this time. it doesn't mean that -- and that this is -- this is why we're emphasized so much the importance of research funding in this program, is the additional work that is going on by other cces and our world trade center health registry to look into the issue. it does not mean that forever and ever it will not be added, but at this time we are not adding it. >> well, thank you, dr. howard, i do appreciate all of the information that you've helped us with, and i am glad to know that this is considered to be an ongoing process into the future
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because we don't know what the future holds for us, and, again, god bless all the first responders who are here and your families, thank you so much. i yield back. >> the chair thanks the gentle lady, and now that all the members of the subcommittee have had an opportunity to ask questions, we can ask for consent, i ask that members of the full committee, ms. clark, give five minutes for questioning. the chair recognizes ms. clark. >> thank you very much, mr. chairman. we've been joined here by congressman gerald nadler of new york, original sponsor, and i wanted to yield time to him. >> thank you for yielding, and let me thank the chairman for holding the hearing and the members. i simply want to say that as someone who is -- along with mr. king and ms. maloney, one of the three original sponsors of the bill. we struggled for years and years to pass it. i'm glad to -- and history has proven the necessity of this bill, i want to thank dr. howard for his wonderful service.
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i'm glad the chairman called this hearing, and that judging from the comments at the hearing, there seems to be a lot of bipartisan support to extend the bill. we know the necessity of that, so i -- i just want to urge that that be done, and that -- and i thank the chairman of the committee again. the extension of the bill is essential because diseases do not go away. this is both for the responders and survivors in the community, and so i urge the extension of the bill. i thank ms. clark for yielding, and i yield back to her. >> following up on the conditions and for the record what is the process by which you can add new conditions to the program? >> well, first of all, the administration has the ability
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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 timing 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 administrator 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
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this statutory timeframes in which you would have to respond to such petition? >> one of the things that the gao report pointed out in their review of our cancer petition and -- or addition of cancer is there was no external peer review of our science that we used to justify the addition of cancer. we believe in peer review very, very much, and we want to do external peer review, but the time frame of 60 days, given the enormity of the task of adding all those numbers of cancers, 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.
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tell us about the registry, why it is important tool for studying the wtc-related health affects? >> the health registry, operated by the new york city department of public health and mental hygiene is a vital participant in the research aspects of the program. they started very soon after 9/11. they have interestingly enough, about 71,000 members also, and i might add i was told by 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.
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>> 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 and etc. came from the world center health registry study. >> so you think it's important to continue the work? >> absolutely vital. >> thank you. i thank the ranking member. >> the chair thanks the gentle lady. 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 to respond promptly. >> 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.
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all right. the time of recess having expired, we will 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
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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
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jersey. we are 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 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 health. i want to thank the committee for giving me the opportunity today to testify given the importance of our clinical service of 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
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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 buildings to their death or finding charred remains. 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,
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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 objectives. i will illustrate with specific patient examples. 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
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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 patients 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 complicated nature of his cancer it has been extremely difficult to street 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
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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
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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 sleep apnea, enabling us to get people to work safely. my fourth patient is a pilot with the law enforcement agency
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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 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.
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>> 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
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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
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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, they have come up with plans and outlines, and that they can treat and get us flu these difficult diseases.
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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.
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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 manhattan by the fastest way possible, by boat. when we arrived, the towers collapsed. the air was thick with dust and spoke and i 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 protection for my eyes, throat, our lungs,
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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 by using buckets and shovels. 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 for survivors and later shifting for body parts all day. 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.
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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. the inflammation in my lungs interferes with my breathing and destroys the oxygen to my blood. my lungs are permanently scarred. i cannot move around my home or take the stairs without grasping for breath.
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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, osteoarthritis and rheumatoid 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 buy 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
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police duty. i've also received several medals 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
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toxic exposure. recently, more than 60 types of cancers have been identified by medical researchers as being directly related to the toxin found at ground zero. cancer arrives years and years later, and for these reasons i urge the committee to approve the bipartisan legislation before it. thank you. >> the chair thanks the gentle lady and thanks all 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
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peculiar location that we had to find different surgeons that were able to get to where his cancer was so this required speaking to people individually, to determine who had the right expertise to actually take care of his cancer. where he could get the right radiation, that was a big 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
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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 appointment, but i can assure you when i call up you'll be in by tuesday. so 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
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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 frustrating 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
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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.
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i can't speak about any of them, but the doctors you know, are just tremendous and they -- as she was saying, when the cancers kept coming back for me and it has rio kerred four times for me, she -- you can now -- she can make those phone calls now and get me to the right, and when she says tuesday, she is 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 and the care you have 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.
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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 since the permanent world trade center 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
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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.
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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, and i assume they are treating 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. because i had that world trade center cough i was not able to hold a conversation without the program providing me with the
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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 normalities 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
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many medications, and then you get a side effect from 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
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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 correctly. >> 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
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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 -- >> 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 certified, all
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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 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
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record that we changed from undny to rutgers. in any event -- >> that's because the state legislature permitted the combination of university of medicine and dentistry at 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.
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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
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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 basketball. [ laughter ] mr. chairman, i have a letter from 38 members of the new york and new jersey delegation to speaker boehner and leader pelosi requesting early passage of the bill. i request it be submitted for the record. >> the gentleman seeks unanimous consent to put it in the record without objection, so ordered. >> thank you mr. chairman. doctor, i wanted to get into the -- try to have you explain, if you will the importance of not only the rutgers center but
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all of the centers part of this world trade program in terms of research, because there is an extensive research component and i wanted to kind of emphasize, if you can how you are developing diagnosis and treatment of disorders people may not even be aware of and how that research and, you know, the uniqueness of the center makes that possible, so could you just kind of describe how the rutgers centers involved in research to world trade center related conditions and how that can diagnose and treat the conditions and the benefits of the research? >> so answering the rutgers only -- >> that's fine. >> the research we have a lot of sleep apnea experts in those
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two centers and what i am really proud to say is because our laboratory toxicologists and our sleep experts we have developed certain markers that we are seeing in certain patients. one of our sleep experts presented this at a meeting that certain markers were developed that certain people could 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 have been able to find people a lot sooner get
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them treated and for people to think about sleep apnea and the environment, because traditionally sleep apnea was thought of something that you had to be enormously obese to get, and we have patients that are not quite playing point guard but are in awfully good shape that have sleep apnea and we are able to -- as i said because of our occupational expertise, sleep apnea is a very serious condition. there is somebody that recently died recently on the new jersey turnpike because a bus driver fell asleep and we have patients that have to drive commercial vehicles and operate planes and operate the subway, operate all kinds of heavy equipment and it's really good that we're able
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to treat them and keep them safe and awake. i feel like that's one thing our research has accomplished, which is not only applicable to our patients, but it's applicable tothat. the other thing i wanted -- if you could get across is how we can expect an increase among the population that -- of these 9/11 related conditions. in other wor understanding is as time goes on we find more cancers, more disorders, you know, as people get older, that maybe didn't exist before and have to be -- now we're finding through your research and others in these centers that are related to 9/11 we didn't know about before. >> so what i want to say that certain kinds of malignancies have very short latency periods. you'd expect to see something like that within just a couple of years after exposure to
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toxins. but other toxins like asbestos have much longer latency periods and they might be seen later on and at a different time. and if i could use just a few minutes to also answer a question you asked dr. howard earlier about mistakes made by providers outside of the program, if i could just add that we have found in the program that people have been undertreated by local providers for various cancers for various severe lung conditions like pulmonary fibrosis. and i do want to say, even though that wasn't exactly the question you andedsked i do want to say we have been able to improve the healthcare by tuning up by getting better diagnostic services to our patients.
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than they were able to get from some of the local people. >> thank you very much. thank you mr. chairman gl the chair thanks the government. that concludes the questions of the members. they will have follow up questions in writing. we will submit those to you, ask that you please respond promptly. i would remind members they have ten business days to submit questions for the record. they should submit their questions by the close of business on thursday, june 25th. thank you very much for sharing your personal experience for your excellent testimony the committee will take up this legislation. i assure you. and act on it t. you've performed a public service by being here today. thank you very much. without objection the subcommittee is adjourned. >> a look outside the u.s. supreme court moments after the court announced its ruling that there is a constitutional right for gay couples to marry. it was a 5-4 decision with
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justice kennedy writing for the majority. the court holds same sex couples may exercise the fundamental right to marry. no longer may this liberty be denied. he also wrote that they asked for equal dignity in the eyes of the law. he was joined by the court's four more liberal justices ginsberg, soteomayor keegan. justin roberts wrote the court is not a legislature when same sex marriage is a good idea should be of no concern to us. if you're among the many americans among whatever -- celebrate today's decision but do not celebrate the constitution it had nothing to do with t. chief justice roberts was joined by the court's three more skv justs. scalia, clarence thomas and
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samuel samuel alito.c justs. scalia, clarence thomas and samuel alito.o justs. scalia, clarence thomas and samuel alito.n justs. scalia, clarence thomas and samuel alito.s justs. scalia, clarence thomas and samuel justs. scalia, clarence thomas and samuel alito.v justs. scalia, clarence thomas and samuel alito.a justs. scalia, clarence thomas and samuel alito.t justs. scalia, clarence thomas and samuel alito.i justs. scalia, clarence thomas and samuel alito.v justs. scalia, clarence thomas and samuel alito.e justs. scalia, clarence thomas and samuel alito.. scalia, clarence thomas and samuel alito.i. scalia, clarence thomas and samuel alito.c. scalia, clarence thomas and samuel alito.e. scalia, clarence thomas and samuel alito.s. scalia, clarence thomas and samuel alito. [ applause ] >> today should also give us hope that on the issues we often grapple, real change is possible. shifts in hearts and minds is possible. and those who have come so far on their journey to equality have a responsibility to reach back and help others join them.
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because for all our differences we are one people. stronger together than we could ever be alone. that's always been our story. we are big and vast and diverse. a nation of people with different backgrounds and beliefs. different experiences and stories. but bound by our shared ideal that no matter who you are or what you look like, how you start it off or how and who you love, america is a place where you can write your own destiny. we are a people who believe that every single child is entitled to life and liberty and the pursuit of happiness. there is so much more work to be done to extend the full promise of america to every american. today we can say in no uncertain terms that we made our union a
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little more perfect. that's the consequence of a decision from the supreme court. but more importantly it's a consequence of the countless small acts of courage of millions of people across decades. who stood up who came out, who talked to parents. parents who loved their children no matter what. folks who were willing to endure bullying and taunts and stayed strong. and came to believe in themselves and who they were.
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and slowly made an entire country realize that love is love. what an extraordinary achievement, what a vindication of the belief that ordinary people can do extraordinary things. >> this weekend on our campanion network our guest on newsmakers is housing and urban secretary julian castro. he'll talk about the housing policy. and the home mortgage market. it's on c span.
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>> when congress is in session, c span 3 brings you more of the best access to congress with live coverage of hearings, news conferences and public affairs events. every weekend it's american history tv. discussionwise authors and his storians and eyewitness accounts of ventsevents. coverage of congress and american history tv. the senate governmental affairs committee held a hearing on the nomination of david shapira. he previously served as an skv with a super market chain. ron johnson, chairs this hearing. >> we can move on to the second part of our hearing here. >> he's been nominated to be the governor for the united
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states -- his leadership, they saw huge growth, expansion in the pittsburgh area to ohio, ind indiana, west virginia and maryland. there is decreasing volume and in fiscal year 2014 with net loss of $5.5 billion. they need to counter the loss in revenue by changing consumer behavior. the ability to expand to customer preference that giant eagle has shown is something that postal service vitally needs. welcome, we look forward to your testimony. we have bob casey from pennsylvania that would tlik say a few words prior to your testimony. >> before we speak, let me just say we don't trust senator casey. >> that's why we were hoping senator toomey would be here. >> maybe pat will show up, too. seriously, great to see you, bob. thanks for coming. this is great. >> i want to thank the chairman and the ranking member for giving me this opportunities to
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introduce david shapira. mr. chairman, you read -- or you highlight the some of his business background. and that's i think one of the most significant parts of his record and resume. i won't dwell on the details of his background. but i do want to say something about his character. i think that's what i'll start with. we all know the challenges of being in elected public service. appointed public service comes with challenges as well. the process itself is substantial challenge and i'm always amazed and gratified that we have people willing to put themselves forward for public service even though the process to get there to be confirmed or even to be considered is challenging. i think that's -- the fact that david is willing to do this is an


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