Transcripts For CSPAN2 Key Capitol Hill Hearings 20240622 :

and my response was, what are you talking about? i do my own work, i don't read patents or copy anybody's patents, and he said, well, you're still infringing on a patent and we'll defend you. i said, how much will that cost you? $3 million. the patent describes looking at a name on a list. apparently, the way the google store works is they look up a name on a list to see if a customer paid for the simulator before the simulator launches. so since i'm on the google store, they see if somebody paid for the app, and the patent that this company owns apparently describes looking up a name on the list, that must mean that they own my life's work and i am due to pay them money. they offered to go away if i would give them $50,000. i'm electing to pay the three million to defend if that's what it takes. but my case is incredibly rare. 97% of the people that are sued by patent trolls have to settle because they don't have the $3 million to defend themselves. 97% of them settle, they pay an average of $300,000 to the patent troll that's suing them. now, when they pay the $300,000 settlement, they're locked up under a nondisclosure agreement which is a contract that says they're never allowed to tell anybody what happened to them. so we have a system where a patent is approved that makes little or no sense the patent troll -- which is an entity that owns patents and creates no goods or services but only sues people for infringing on those patents -- presents its victims with a $3w million defense fee offers to let them off the hook on the condition they never tell anybody what happened. how many people can come one the $3 million to tell the truth? not many. i'm one of the very, very, very few. >> host: how is it that you were able to come up, what were you doing -- >> guest: thank goodness, they sued seven other people all at once, so i'm able to share the defense costs, and also, thankfully, my house is paid for, so i can just sit there in my house and work even if every penny of revenue winds up going to the lawyers. >> host: and what are you hearing back from congress? >> guest: they agree. the vast majority of the people in congress agreed h.r. 9 which the current bill to address the patent-trolling problem, is a great bill x. i'm so encouraged that they agreed h.r. 9 is good, because i know it's a great bill, i know it's going to bring the patent system up to reality and the current economic climate, not the theoretical hopeful climate it was designed for many years ago. and, hopefully the law will actually get voted on. last session, like 90% of the house, i think voted for patent reform bills but then it never made it over to the senate or vice versa. somebody kept the bill from being voted on even though almost everybody approved it. hopefully, that won't happen this year. hopefully, it'll actually get voted on this year and turned into law because it is necessary to bring the patent system from the optimistic ideals under which it's created to address the realities. way the system is actually being used today, which is to require patents to make no sense and then use those patents to sue people that are working. >> host: mr. meyer, when you look at the other side, what's the argument on the other side against -- >> guest: the argument on the other side is that if an inventer invents something, he should be able to reap the rewards and the idea that he thought of. that's the argument. now, when i hear this, if i don't know any better, i agree with it except for one minor problem. when an inventer files the patent is he really inventing something new or just filing a patent for something everyone is already doing? this is an actual patent. it's a patent for a stick that a dog can play with and it was approved by the patent office in the year 2002 n. the year 2002, the patent office decided that when someone sent them a patent application saying i propose a stick that a dog can play with, they approved it. that is the level of patent that the patent office actually approves. and the argument, oh, i invented something, so i want to have my invention protected is completely hypothetical. it's not what happens in the real world. what's actually happening is people are getting patents for ideas that are not new, that people are already doing every day and then suing everyone that does those things, claiming that the patent office gave them the permission to own the idea. well, people have -- patent trolls are suing people for using a wi-fi at the office, for using a scanner at the office, and in my case, for using the google store to sell my app which, of course, google and i are perfectly in agreement that i should be able to do. so the patent trolls, what they actually do is take out a patent that is not new or unique or non-obvious or beneficial to society in any way at all and then sue people. now, the logical response to this one would be, well, if the patent is invalid, no problem that should be overturned. that's what the trial is for. go back to the beginning of our conversation. it's $3 million to defend yourself at trial to see if the patent is valid. how many people have $3 million to defend themselves? and that's why they have to take the $300,000 settlement for the patent that makes no sense at all. and they get locked up under a nondisclosure agreement when they do it so nobody can ever find out what happened to them, and that's what's actually happening. >> host: how often does this happen? >> guest: so -- >> host: especially in the tech community? >> guest: it's difficult to say exactly how often it happens but 85% of the companies that are in the consumer electronics association have been sued by patent trolls. 85%. and patent litigation is one of the most common litigations that's happening in the federal courts right now. how often is it happening? i don't know. but that's kind of the way the lawyers have it set up when they make people sign nondisclosure agreements. in my case the patent being used to sue me is owned by a lawyer, the lawyer is suing me, and it's another law firm that is doing the legwork. a lawyer running a law firm with another law firm doing the legwork to sue me. who is the one and only inventer in this process? and i remind you i write flight simulators for a living. who's the actual inventer? what's the patent law actually doing? >> host: austin meyer what's the name of your product again? >> guest: x-plane. >> host: x-plane. all right. >> guest: and you can twist it. >> host: all right. >> guest: you're on the roll. >> host: and off we go. >> host: and now joining us on "the communicators" is representative hank johnson democrat from georgia and a member of the judiciary committee. congressman, why are you here at the ces on capitol hill show? >> guest: well, it's always good to see the change that happens from year to year with technology. and what investments people have made and what products have been derived from those investments and how those products make life simpler, make life easier but yet pose a whole new set of issues legal issues that we in congress need to be aware of. and so this helps us to see what's happening on the ground how things work, removes it from theory gives it practical application. and so i as the policymaker make it a habit to come each year to see what's new. >> host: what are some of the public policy issues that you're hearing from the that people showcasing their wares. >> guest: patent protection, patent protection and also copyright protection copyright protection and copyright protection. you know, people who come up with these ideas and receive a patent or a copyright, they receive that property right and the right to profit from it. and so when someone appropriates it or misappropriates someone else's technology, someone else's property, intellectual property it's unfair, it's criminal. and so how do we go about encouraging and incentivizing the creation of new products and curb the ability of the create tore profit from those innovationsing -- creator to profit from those innovations? as time goes on and technology changes and the law has been changed to take into consideration the new technology. >> host: is there bipartisan support for patent reform? >> guest: no, because much patent reform that we are concerned with currently has to do with closing the courthouse door to those who create, making it more difficult for them to actually use the courts to enforce their property rights. so that's the that's a hurdle that would we will have to overcome. but i think that the framers of our constitution intended that people would be able to go to a court of law and settle their disputes. in fact, the seventh amendment to the united states constitution provides for a jury trial in a civil case in excess of $20 in value. so that's enshrined in our court -- in our constitution in the seventh amendment. and so actually by procedural hurdles chose the courthouse door to make it impossible for someone to go to court have a jury of their peers decide the facts and award any damages that may or may not be due i mean, if we close that door, then we're closing our way of life. and so i fight myself the to make sure we keep those courthouse doors open, that the third co-equal branch of government, in fact, be adequately restored so that it can act as the third co-equal branch of government. >> host: joining us here on "the communicators," hank johnson democrat of georgia member of the judiciary committee. thank you, sir. >> guest: thank you for having me. >> host: nutritionists ask if your brand is fda compliant. daniel zadoff is one of the cofounders of the company. what does nutritionix do? >> guest: we help restaurants comply with the regulations by showing their calorie counts on the menu board and helping customers see the full breakdown on interactive calculators menus and different devices. >> host: now, why are you showing your wares here at ces? i mean, how -- what kind of technology do you use to do that? >> guest: so we have nutrition calculators that we distribute for the different restaurants, and recently there was a patent troll that was going after any company that had any form of a meal builder. and, luckily, they went after a lot of large companies that had the budget to fight the troll and, bravo was able to have the patent overturned. ever since the troll went away, our company's been having huge growth. >> host: so being here on capitol hill, your issue is -- >> guest: our issue is patent reform and we are here to speak with the congress people to specifically mention which part including demand letters and indemnification clauses to help entrepreneurs better serve their clients. >> host: and you talked about this patent troll. what is a patent troll? >> guest: a patent troll is a nonthreatening entity that goes after small entrepreneurs or large ones even with a very small claim hoping that they can extract a very large settlement, because the cost of fighting aing to would be in the millions of dollars -- fighting a troll would be in the millions of dollars whereas the settlement would be in six digits. >> host: what is your background? >> guest: half political science and computer science, but learning the ways of business as we go. >> host: and how'd you come up with the idea of, essentially interactive menus? >> guest: actually, along with our cofounder, we had built a prototype while we were in college which was a nutrition calculator for chipotle. and then over just sending it around to friends and getting 10,000 visitors per day we realized it was something important that the public wanted, so we built a full platform to to help all restaurants manage their information. >> host: and what's been the response from congress? >> guest: well, so far this new congress seems very excited to have legislation on the topic and we're going to speak to as many congressmen as possible to discuss the issues and see what is the best way to help both entrepreneurs defend their products, but more importantly be able to run their businesses where any of these demand letters that currently exist would put a company like ours under. >> host: and the name of the company is nutritionix. and gary shapiro is and ceo of cea, the consumer electronics association, which puts on ces the big show in vegas. but we're up here on capitol hill. gary shapiro, what are we doing can up here on capitol hill? >> guest: we're just giving members of congress and their staff a little taste of where innovation is going where technology's going. obviously, this is less than one-one hundredth the size of ces in las vegas but there's so many things happening so a lot of these companies there's public policy implications for what they do. because these companies are innovators they're doing things that are different affecting other business mold, and they want -- models, and they want members of congress to see this is where the future is, safety of automobiles safety at home, also in terms of privacy, preserving your create all sorts of great things these companies are doing, health care and otherwise. look, look what we're doing we're coming to you,. just so you know, there's a lot of good things happening around our country. >> host: what are some of the public policy issues that the tech community is facing? >> guest: well, one of the biggest by far that every tech company is affected by are these little guys called patent trolls. and patent trolls are basically lawyers who are looking for work, and they send thousands of letters out they buy a week-old patent weak old patent, and they threaten people for having wi-fi in restaurants or using a certain copy machine or the recent one had to do with you're running an audio blog. and they say give us money, or we will see you. -- we will sue you. president obama, the bipartisan house of representatives last year passed legislation saying this is wrong senator reid killed the bill at the last minute. now we have a new senate majority leader, we expect that bill to be signed by the president this year. >> host: so patent trolls, what about net neutrality? the companies that we're seeing up here, are they facing any net neutrality issues? >> guest: i think everyone here is united with the concept that net neutrality is a good thing an open internet allows businesses to thrive. the message on net neutrality is the fcc did what they did in a vacuum. there's going to be years of litigation fights over fcc nominations. congress, it's your job to pass legislation and say what the fcc should do about net neutrality. the senate passed a unanimous resolution on that recently, and we're hoping that the entire congress gives the fcc authority to act saying we need an open internet with very clear rules so businesses that are uncertain, the way it is now you have to go to the fcc for permission for things for new services. nobody likes that. >> host: gary shapiro president and ceo. ted henderson is our guest on "the communicators." mr. henderson, what is capital bell? capitol bells? >> guest: so capitol bell is the a company that makes apps for congress. we make apps to help congressmen and their staff work better and work better for their constituents. >> host: where'd you come up with the name in. >> guest: well, our first app is called capitol bells, and it's connected to the bells that are all around the capitol campus that ring out when votes are starting and there's quorum calls and whenever there's any activity on the floor of the house or the senate. >> host: and what's another app that you've come up with? >> guest: our newest app that we released last month is a new way for congressmen and their staffs and those who work on the hill to get those vote alerts, but it also lets them discreetly discuss work and life on capitol hill. >> host: discreetly. >> guest: discreetly. so you can log in, just using location. you don't have to share any perm -- >> host: much like yikyak? >> guest: but you're able to create an identity, you can create aliases, you can build a reputation with your colleagues you're speaking with, and, you know by talking about politics, talking about what's new on capitol hill, you can build a following so hopefully find ways to escape partisan gridlock and talk across party lines. >> host: mr. henderson, are these apps available to anyone outside of congress? >> guest: these apps are available to everyone outside of congress. capitol bells anyone can download and look at what's happening on the floor, what the current bill is. anyone can download and get the vote alerts but only people who are verified capitol hill users can use the social features to discreetly discuss legislation with each other. >> host: what's the purpose of an app like this? we'll have you demonstrate it in a minute but what's the purpose of an app like this when there's so many different can ways of knowing what's going on? >> guest: i think it's a way to be able to actually find out what is happening right now in congress, you know aside from the official activities. what are people here who are working every day, what are they talking about? you know, what are the issues that are top in their minds? what are even the jokes that are, you know, being shared between them. i think what we lack right now, this is my personal opinion but we kind of lack community on the hill. we've kind of gone to the place where we send e-mails to talk to each other we send e-mails to ask for a cosponsor or ask to sign on to a letter, and you don't pick up the phone go to the other person's office to talk to them face to face. so what happens is you end up dealing with -- [inaudible] in the ether. and you're not sharing any poker games with each other or dinners or anything else. so i want to have a way where we can have a community, we can talk about what's happening right now in realtime and what are the issues that are important. >> host: all right. walk us through one of your apps, if you would. >> guest: so this is our new app, and right now we can see based off of that information from the bells that the house is in session. the senate is still voting right now even though it's almost 7:00. and here is the field from our -- [inaudible] >> host: with cox. >> guest: yes. and, of course, talking about the helicopter that landed right on the capitol lawn today. we have a vote, and some of them aren't entirely serious. and then, you know, others are. how do you not get shot down. >> host: right. this again is cloak room, is that correct? >> guest: this is cloak room. and these are all verified capitol hill users who are just accepting, you know, what's trending on capitol hill right now. of course, the helicopter landing right in our front yard creates a little buzz. >> host: all right. so anybody can download cloak room and capitol bells. >> guest: right. but only verified users -- >> host: can use the social part of it, right. can anybody read the social part of it? >> guest: no. >> host: just the verified users. >> guest: only the verified users. >> host: all right. so why are you up here showing your product to members of congress? what are some of the public policy issues? >> guest: well, a big issue for us is token data and open government because by having open data like that that information from the bells that tells us what's happening in realtime, we can create that like capitol bells that help congress work better. and i think that we need to have more attention on what we need and want to do, and we have an event that we're sponsoring at the end of the month called hack for congress and it's a hack-a-thon where we bring technologists and members of congress their staff, we're having the members of congress propose under their day-to-day office life, you know, is it getting a cosponsor is it communicating with a government agency? it could be anything, and we want them to tell us what's wrong with congress. you know, what makes it difficult for you to do your job. and by bringing dozens of technologists and designers and policymakers together, maybe we can find more solutions like capitol bells to come up with ideas that we wouldn't have thought of other side. of otherwise. >> host: what's your background? how'd you get involved in this? >> guest: i have an engineering background. i never really expected to be involved in politics at all. and i went to graduate school to study atmospheric sciences and climate change. i thought well if i want to have a career in this space i probably need to go to the hill and figure out what's going on on a policy level. see how we're going to change our energy economy. and after a few years of being a staffer on capitol hill working for congressman from flint michigan i realized before we were able to start hacking the policieses, we were actually going to have to start hacking congress itself, and maybe i could use my engineering background for that. >> host: ted henderson of capitol bells has been our guest. >> guest: thank you very much. >> you've been watching "the communicators" on c-span. if you'd like to see more programs go to c-span.org/communicators. >> c-span, created by america's cable companies 35 years ago and brought to you as a public service by your local cable or satellite provider. >> up next, the house energy and commerce subcommittee hearing on 9/11 survivor health subsidies. then a conversation on higher education at the national journal. >> the house returns today at noon eastern with legislative business set the begin at 2 p.m. on tuesday the house could take a revote on the trade adjustment assistance bill that members rejected friday. the senate also back today at 2 p.m. eastern. at 3 p.m. they resume work on legislation concerning defense programs. watch the house live on c-span, the senate live on c-span2. >> now, a house energy and commerce subcommittee hearing on reauthorization of compensation for victims of the 9/11 attacks. the bill would also eliminate caps on payments to victims and their families. this is two hours and 20 minutes. >> ladies and gentlemen if you will, if you will take your seats, we will begin. i'd like to ask all of our guests today to, please take their seats. the subcommittee will come to order. the chair will recognize himself for an opening statement. ed the's health sub-- today's health subcommittee hearing will examine the world trade center, wtc health program, that was created in the 9/11 help and compensation act enacted in 2011. the act allocated $4.2 billion to create the health program which provides monitoring testing and treatment for people who worked in response, in recovery operations as well as for other survivors of the 9/11 attacks. the authorization of the health program ends on september 30, 2015. another part of the law the september 11th victim compensation fund, is under the jurisdiction of the judiciary committee. it will continue to accept applications until october 3 2016 over a year after the health program authorization ends. the wtc health program funds networks of specialized medical programs, and these programs are designed to monitor and treat those with 9/11-related conditions. for responders, the world trade center medical monitoring and treatment program; for survivors, the nyc help and hospitals corporation wtc environmental health center; for nyfd personnel, the fire department of new york responder health program; the national program, the wtc health program has a nationwide network of clinics with providers across the country for responders and survivors who live outside the new york city metropolitan area. these programs provide free medical services by health care professionals who specialize in 9/11-related conditions. our colleagues, representatives carolyn maloney, peter king and jerrold nadler have jointly introduced legislation -- h.r. 1786 the james zadroga 9/11 health and reauthorization act -- which we authorize as the act. this legislation has begun an important conversation that will lead to a timely and fully-offset reauthorization of the health program. today's hearing will allow us to learn more about how the program is working and whether changes are needed. we will hear from the director of the national institute for occupational safety and health who is responsible for administering the program as well as from the medical director of the robert wood johnson medical school and two first responders who are enrolled in the world trade center health program. i look guard to the testimony -- i look forward to the testimony today, and i would like to yield the balance of my time to the gentleman from new jersey representative lance. >> thank you, mr. chairman. it is my honor to welcome david howley a constituent in new jersey's 7th congressional district, to the committee this morning. david, thank you for making the trip from new jersey to share your story and advocate for those who cannot be with us today. we look forward to your testimony. i first met david several months ago when he came into my office in westfield, new jersey to discuss the bill before us today, and this reauthorization act is i think critically important. david has been a tremendous advocate for the legislation because, as he will detail in his testimony he knows firsthand the importance of these programs for him and his fellow first responders and survivors. david joined the new york police department in 1985 and served in various d. cans over his 20- departments over his 20-year tenure. he is a third generation law enforcement official following the tradition of his father and grandfather. he was serving in the nypd operations division on september 11th 2001, and spent the next several months in the dust and rubble of ground zero. i'm proud to have david here with us today and i'm proud to be a cosponsor of this critical legislation. it is my hope, mr. chairman, that we can work in a bipartisan fashion to move this legislation forward quickly and i look forward to voting for it not only here and in full committee, but on the floor of the house of representatives. mr. chairman, i yield back the balance of my time. >> the chair thanks the gentleman, and i also would note that some of our colleagues from the new york delegation who are not on the committee but very concerned of this issue and sponsors of the legislation have requested to sit on the dais, and we welcome them this morning. at this point the chair recognizes the ranking member of the subcommittee mr. green for five minutes for opening statement. >> thank you, mr. chairman. thank the witnesses today and to the first responders in the audience who for their bravery and service both on and after the tragic day of 9/11. thank you for coming today to share your personal experiences with the committee and shed light on the significance of the world trade center health programs. no one here can forget the horrific attacks perpetrated upon our country at the world trade center in new york the pentagon in washington, and at the field in shanksville pennsylvania. during and after the attacks tens of thousands of first responders including police firefighters emergency medical workers, jumped into action to assist and rescue, recovery and cleanup. as a result of their service these responders were exposed to dust smoke toxins such as fibrosis glass, particulate matter and asbestos. this exposure caused many of them to develop a spectrum of debilitating diseases including respiratory disorders like asthma skin, prostate and other cancers. a gao report suggested that firefighters who responded to the attack, quote, experienced a decline in lung function equivalent to that of which produced by 12 years of aging. in addition to the physical ailments these heroes now have suffered post-traumatic stress sin droarnlings anxiety stemming from psychological trauma they experienced in the aftermath of the attack. nearly one decade after the september 11th terrorist attacks, the 9/11 health and compensation act was signed into law in 2010. the act created the world trade center health program within the d. of health and human services. the program provided evaluation, monitoring and medical necessary, physical and mental health treatments to first responders and certified eligible survivors of the world trade center related illnesses. it's also established a network of clinical centers of excellence and data centers. if for these responders and survivors who reside outside of the new york area it created a national network of health providers who provide the same types of services for world trade center-related illnesses. while cancer was not originally listed under the statutory related health conditions, 60 types of cancer were added in 2012 after a petition by members of congress. as of may the 5th of this year 3700 members of the health program had cancer. the act also established a victims' compensation fund to provide compensation for harm suffered as a result of debris removal. without action by congress funding for the current health program will terminate on september of 2016. the 9/11 health and compensation reauthorization will reauthorize the critical world trade center health program and the victims' compensation fund. as required under the current program, new york city will continue to pay 10% of the total cost. it's important to note that the wtc health program serves our heroes nationwide and extends far beyond the new york area. both these currently enrolled and future enrollees live in all areas of the country. in fact, as of august 2014, 429 of the 435 congressional districts were home to at least one 9/11 responder or survivor. we have not abandoned those who bravely sacrificed their own well being on behalf of the country in the wake of terrible attacks. we have a duty to serve our first responders and survivors and heroes with complex health care from 9/11. it's critically important that we support the 9/11 health compensation reauthorization act. i'd like to thank the first responders for the gallant and selfless service on and after 9/11, i'd also like to thank the doctors and administrators of the program for their effort toss treat the complex illnesses inflicted on our first responders and continue research on the impact of exposure to toxins and psychological trauma. mr. chairman, someone on our side of the aisle would like a minute i'd be glad to yield to them. i'd like to yield to my colleague from new york. >> i thank the ranking member of the subcommittee as well as the chairman and welcome our witnesses here today. while not a member of this subcommittee i am a member of the full committee on energy and commerce i'm congresswoman clark of new york. and i wanted to thank chairman pence and ranking member green for holding this hearing and allowing me to sit in this very important hearing. also want to thank our panel its. it's good that you've shared your experiences to remind america of the importance of renewing this very important program. this is a great first step toward reauthorization in a time when the american people are skeptical about the work of congress. i'm happy that this committee's working in a bipartisan fashion to move expeditiously to renew this important -- these important health programs. congress must move forward to insure first responders and survivors of the 9/11 terrorist attacks on the world trade center, the pentagon and shanksville, pennsylvania continue to receive the care they deserve and they so sorely need. with that, mr. chairman mr. ranking member i yield back the time. >> mr. chairman, i yield back. >> chair thanks the gentleman. now recognize the chair of the full committee gentleman mr. upton, five minutes for an opening statement. >> thank you, mr. chairman. back on september 11th, '01 the world as we knew it was turned upside down by the unthinkable acts of terrorism which took the lives of nearly 3,000 individuals in new york, pennsylvania and virginia. left a mark on every american. every one of us was impacted. from the smoldering ruins of the twin towers and the pentagon to the wreckage of united airlines flight 93, the painful images and heartbreaking perm stories of that day -- personal stories of that day every minute will not be forgotten. we remember the thousands of innocent lives lost and the communities of loved ones they left behind, and many of us met with those. we also honor the countless acts of heroism and leadership shown by the brave american men and women in those hours of pandemonium and in the days, weeks, months and now years that have followed. then, for me as chair of the telco subcommittee on this committee, i led a bipartisan delegation both to new york and to the pentagon where we witnessed firsthand the valiant efforts of our first responders who were certainly exhausted overwhelmed but still working 24/7. first responders spent hours, days in the air that was thick with dust and smoke digging through the rubble, searching for survivors. when i visited ground zero, new york's finest were still working round the clock in impossible conditions for the recovery efforts. their selfless work took a toll on their health. we know that. the federal government provided aid to those individuals who were injured and the families of those who were killed in the attacks through a discretionary grant program. as we should. 2011 the 9/11 health and compensation act established the world trade center health program and the victim compensation fund. our ranking member, frank pallone, and our new york colleagues representative carolyn maloney peter king jerry nadler have jointly introduced h.r. 1786, the 9/11 health and compensation reauthorization act which would reauthorize both of these programs. at today's hearing, we're going to focus on the world trade center health program as it is the program that falls in this committee's jurisdiction. the authorization for the world trade center health program ends at the end of september just a few months from now. while the victims' compensation fund remains open to applicants into october of 2016. the wtc health program funds networks of specialized medical programs designed to monitor and treat those with 9/11-related conditions. the members enrolled in the program are not just from the greater new york area. in 2014 there were 71,942 individuals in the world trade center health program from 429 of the 435 congressional districts. there are 75 michigan residents currently enrolled in the wtc health program. today's hearing is, yes, an important opportunity to learn more about how the world trade center health program is operated since its authorization in 2010 and what is needed for it to successfully operate and meet the needs of its members in the future. i want to thank all of the witnesses today for taking the time to be here, especially thank officer howley and detective burr net for their service to our country, for sharing their personal stories and struggles with this subcommittee. the bill needs to be passed, and i will look, i will look to consider every effort to make sure that we get it to the house floor prior to its, prior to the end of september so that we'll have an opportunity to make sure that these victims are taken care of. and i yield back the balance of my time. >> chair thanks the gentleman. and now chair's pleased to recognize the ranking member of the full committee a gentleman who has many constituents impacted by this issue mr. be pallone, five minutes for an opening statement. >> thank you, chairman and also chairman upton. i particularly want to thank chairman upton for the comments he just made highlighting how we need to perceive this as a national program and impacting people who came and helped out on 9/11 and the after math from all parts of country. my staff probably is tired of my telling the story but i remember within a few days after the attack we went up to new york city with president bush, and i was standing next to this big yellow fire engine that said "hialeah florida," and i said what is this truck doing because i think it was only one or two days after and i wondered how it got there so quickly. the firemen said, oh, as soon as this happened, we got in our fire truck and we drove up from florida because we wanted to help. and it just struck me at the time about how so many people responded from all over the country, and so many people were injured because of the fact that they were there for a few days or a few weeks or a few months even. so this bill is a critical first step at insuring that the 9/11 health program is extended as soon as possible. as you both already know, this is one of my top priorities for 2015 and i'm grateful for chairman pitts and upton for your willingness to work with us to insure the timely passage of this bill. i have to recognize automatic first responders -- all the first respond exercise who are here. i also want to acknowledge the doctor who ones the new jersey 9/11 health clinic. thank you for being here to share your expertise and experience with us today. and let me also mention all the new yorkers representative maloney, the sponsor of the bill. i don't know if representative nadler's here, but certain he he's been involved since the beginning. representative king, i see, who joined the committee today as well as our representatives, clark, eliot engel and also my colleague from new jersey leonard lance, who's a cosponsor. since day one you've fought tirelessly to insure that our first responders are cared for. beyond the immediate loss of life of 9/11, we now know with great documentation that thousands of first responders and survivors of the attacks are now suffering debilitating illnesses from its aftermath. in fact, more than 100 firefighters and 50 law enforcement officers have reportedly lost their lives to wtc-related health conditions. additionally, more than 1500 active duty firefighters and ems personnel and over 550 law enforcement officers were forested to retire -- forced to retire due to wtc-related health conditions. we now have a deep understanding of how the tons of dust can glass fragments and other toxins released into the air affected both responders and survivors. illnesses include respiratory diseases, mental health conditions and cancer. and that's why the 9/11 health and compensation act signed into law in 2011 is so critical. it established a program to monitor and screen eligible responders and survivors and provides medical treatment to those suffering from world trade center-related diseases. but what is so important to note is this program isn't there to provide health insurance. these are complicated conditions that are chronic in nature and require special expertise to appropriately diagnose and treat. that is why the program includes a network of clinics and providers specifically trained to treat these diseases. it also insures that providers and survivors bear no out-of-pocket costs associated with these particular health conditions. the wtc health program currently provides monitoring and treatment services for more than 71,000 responders and survivors. they reside in every state and in 429 of the 435 congressional districts. as some of you don't know, the law is named for james zadroga a new jersey hero who responded on 9/11 and spent hundreds of hours digging through world trade center debris. he died in 2006 for pulmonary disease and respiratory failure after his exposure to toxic dust at the world trade center site. like him thousands of people are from all over this country came to the aid of our country and helped others at ground zero. those responders and survivors should not be abandoned and i hope we can extend the health program without delay. i just, i only have 30 seconds left for mr. engel. i apologize but i yield to him. >> well, thank you. thank the gentleman for yielding, and let me agree with everything he said. in the aftermath of september 11th it's estimated up to 400,000 americans were exposed to copious amounts of smoke and toxic substances and as a result, many of our heroes now suffer from these debilitating conditions. cancer depression, post-traumatic stress disorder, and it goes on and on and it's heartbreaking that the 9/11 survivors and first responders who have already given so much must now carry the burdens of these lung ailments. the very least we can do is to help them. so i was proud to be an original cosponsor of the james zadroga 9/11 health and compensation act, and i'm proud to be an original cosponsor of the legislation we're discussing today. a failure to pass this would institute an egregious affront to the americans who gave so much on 9/11 in service to their country, and i specifically say americans because the population of those who will benefit spans the entire united states. it's 429 of the 435 congressional districts benefit from these programs. so this is an issue of national performance. so first responders who rely on the world trade center health program did not hesitate to risk their lives for fellow americans on 9/11, and we should not hesitate to care for them now. so it's critical importance that we permanently reauthorize the 9/11 health and compensation act. thank you, mr. pallone. thank you, mr. chairman. >> chair thanks the gentleman. and as usual all members' opening statements written opening statements will be made part of the record. that concludes our time for opening statement. i have a unanimous consent request i'd like to submit the following documents for the record: statements from representative peter king, new york 2nd district, from the international association of firefighters, from the sergeants' benevolent association, from the national association of police organizations and an article from the new york city patrolmens' benevolent sowchtion featuring mr. david howley. without objection so ordered. we have two panels today. on our first panel, we have dr. john howard, director, national institute for occupational safety and health. niosh. thank you very much for coming today, dr. howard. your written statement will be made part of the record. you'll be recognized for fife minutes to -- for five minutes to make your opening statement at this time. you're recognized. welcome. >> thank you, mr. chairman, and distinguished members of the committee. my name is john howard, and i'm the administrator of the world trade center health program. i'm very pleased to discuss the program and those it serves who responded to or survived the september 11, 2001, terrorist attacks on new york city and those who responded at the pentagon and in shanksville pennsylvania. the program's members responded to an epic disaster, and as a result suffer mental and physical injury, illness and the risk of premature death. the program's members responded to the 9/11 disaster from all 50 statements, and it has been stated from 429 of the 435 congressional districts. the original effort to care for those affected by 9/11 toxic exposures operated as a series of cooperative agreements and grants. as a discretionarily funded program, it depended on year-to-year appropriations making it challenging to plan adequately for the members eon going health needs. in january 2011, as has been stated the 9/11 health and compensation act became law. stabilization of funding allows the program to more adequately care for 9/11 responders. in calendar year 2014 of the 71,942 current members enrolled in the program 20,883 members received treatment for health conditions arising from hazardous exposures from 9/11 and 28,059 received health monitoring to insure early medical intervention for any developing health condition that is specified for coverage by the program. since the program's implementation, members have been treated for a number of different health conditions. for example 11,473 members have been treated for asthma, 6,672 members have been treated for post-traumatic stress disorder, and 6,497 members have been treated for chronic respiratory disorders. the majority of our members suffer from multiple mental and physical health conditions and take multiple medications for these conditions. certain types of cancer were added to the list of health conditions covered by the program in late 2012. since then the program has certified 4,265 cases of cancer. the world trade center health program fills a unique need in the lives of our members and for our society. first, members are evaluated and treated by medical providers who have a depth of experience dating back to september 11th, 2001, and the physical and mental health needs of 9/11 responders and survivors. they are very familiar with. their extensive clinical experience with the responder and survivor populations as well as their understanding of the role of exposure in causing disease exceeds the training of providers unfamiliar with the types of exposures and held conditions common to the 9/11 population. and how to make the connection between exposure and illness that the zadroga act requires. second, our members are receiving health care that cannot be provided or only provided with great difficulty by other types of insurance plans. for example, health insurance plans do not routinely cover work-related health conditions leaving such coverage to worker's compensation insurance. however, worker compensation insurance often presents coverage challenges to members because their 9/11 health conditions often first manifest after 9/11 many years later. beyond the statute of limitations found in most state worker compensation laws. the world trade center health program serves a vital role in overcoming the difficulties that members might otherwise experience in its absence. without the program, 9/11 responders and survivors might end up in limbo instead of in treatment. third, by providing evaluation and treatment for those most affected by 9/11 as a unified cohort the program greatly aids not only the individual members, but also our national understanding of the long-term health effects of 9/11 including its effects on children. the program helps us better prepare for the medical needs arising from large scale long duration disasters that might not, hopefully, occur ever in the future. thank you for the opportunity to testify, and i'm happy to answer any questions you may have. >> chair thanks the gentleman and i will begin the questioning and recognize myself five minutes for that purpose. dr. howard would you continue to elaborate a little bit on the history of the world trade center health program? how it came to be, how it has changed over time? >> thank you. the program started as a immediate response to what doctors were seeing, especially with the new york city fire department, in what was called at that time a world trade center cough. and those doctors and others that were recruited to the effort began to observe that individuals who were responding were becoming ill from inhalation of the and the toxins contained in the dust. is so immediately -- 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 that those doctors could begin, now many many years later, their first work in trying to articulate characterize the issues that responders were facing and survivors. >> another question, what are the consequences of letting world trade center health program expire in september of 2015? how would it affect the operation of the centers of excellence across the country and the patients who use these facilities and services? >> certainly any of of us that receive health care from a particular health plan if we're notified that that plan no longer exists creates great stress in our life. we have to adjust to new providers and other changes. our efforts to help those who may be a part of our discontinued program -- let's hope that does not happen -- would have to receive other providers of care, and it would be our responsibility to make sure they did. the centers of excellence would not operate any more as a coordinated care operation for responders and survivors. >> thank you. now, we're aware that special master sheila burnbaum 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 agreement with the victims' compensation fund. we regularly meet with the staff. our staff is embedded with their staff to assist in the medical review. the victims' compensation fund has adopted our program requirements for their medical review. to date, we have provided information to them on 18,262 of their vcf claimants. we continue to work very closely with the victims' compensation fund. >> how much higher is the federal employees' compensation act, feca, compensation rate compared to medicare parts a and b reimbursements for hospitals? >> the statute the zadroga act sets the reimbursement rate according to the worker's compensation rates of the federal government, the feca rates. medicare rates are lower but maybe by 10-20% lower. so they are, the feca rates are higher and our reimbursement rates for providers are higher than medicare. >> dr. howard, i can imagine that it is a logistical challenge to provide care for the responders and survivors who are scattered all across the country. what can you do to insure that a physician in another part of the country seeing only a few world trade center patients benefits from the clinical experience of the physicians in the new york metropolitan region who have more experience treating these wtc-related health conditions? >> the nationwide provider network that we have which is currently seeing about 8,287 individuals, we have total coordination with that provider network. on 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 our centers of excellence in new york and new jersey. we also provide them with additional training. we are working withçó medscape right now to have online training available for all of our providers. we work with the, ourw3 contractor lhi, which has the nationwide provider network. and that physician, their medical director sits in all of our group cans and committees and -- 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 cces. >> good. thank you very much. my time's expired. chair now recognizes the ranking member of the subcommittee, mr. green, five minutes for questions. .. >> thank you. i would respond in two ways. one, on behalf of the members it's very stressful to constantly be told on a year-to-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 that suffer from ptsd, and some highly resistant ptsd. and i'm sure that if they were here with me they would have stressful year by year funding is to the program. from the administrative perspective, it's very difficult because we were always up to the last minute thinking, should we start preparing for the program not to be funded? and that was certainly something that we did not want to happen but it requires an long process of preparation. so we were never sure about that. >> so the dedicated mandatory fun things help you not only plan better also the reaction from the patient's? >> it's like night and day. when the act passed i think all of us members and as they were administering the program breathe a sigh of relief that we have five years. we never had that before. >> the health compensation reauthorization that would permit extend the program, could you explain a permanent extension of the program would ensure that responders and survivors have that peace of mind? you talk about medical monitoring and treatments they come to rely on will continue to meet their needs. >> as i say, i think that the insurance of having the same provider, especially for our patients that suffer from very serious mental and physical conditions, is a piece of mind that can only be bought from mandatory funding without an end date. for us in the program it really helps us do long-term strategic planning. it's very hard to do contracts when you can only provide a year or two or five years. but being other look beyond the five year horizon is extremely helpful for the efficiency and the integrity of the program. >> it seems the patients enjoyed a great deal of understanding of the providers, the doctors and providers in the program. how do you think this affects the patient outcomes? >> without doubt. the providers that i first met in august of 2002 when i became first involved in this program are the very same providers that i see now in june of 2015. their dedication to this population has been worthy of note. >> so the doctor-patient relationship is important. because of the continuation of the program? >> the trust that our members have to the providers that we are fortunate to have cannot be duplicated anywhere else. >> do you think continue the program is so important to ensuring the same level of knowledge and expertise? >> very definitely. our providers have a wealth of the clinical information that other providers would take them years to develop. >> okay, thank you, mr. chairman i yield back my time. >> the chair thanks the gentleman. now recognize the vice chairman of the subcommittee, the gentleman from kentucky, mr. tester, five minutes for questions. >> thank you, mr. chairman. thank you dr. howard, for being here. i spent searches of my life in college and grad school in metro new york. back when i was underground eusebio so it's been a longtime of the u.s. off times square. it was all uniforms public servant and always enjoyed getting to know and to to them. i am a talker so i engaged with them, what a great service. you hit something i wasn't going to go this direction but it's important to talk about it did open my eyes. i live in bowling green, kentucky, to where we take care of our servant as well, as a fire competitive fire, if you want to go to the files and injured, we have systems in place, disability insurance and so forth. and so i think a lot of us that are not in new york continuously and is run to areas like my friends here are the programs already in place. will i know it's unique in the vastness of it but why is unique in terms of other injuries that people might receive that requires its own system, other than just volume? the volume? could you hit the challenges? you've opened my eyes to some things to the. the challenges you already said why this is completely unique, needed to program? why diseases are different if you're a normal -- i don't know if normal is the right word, but a more standard i guess the situation and firefighters or the people would be in? >> be happy to. i think of us would answer that question is by looking at some of the findings that we have gotten from the investment that the act has allowed us to make in research. looking at this population and the condition now just mention a few issues. on the mental health issue we have seen a delayed onset of ptsd. that's not normally seen in other types of situation. that something that we're seeing in this population. we've also seen a worsening of ptsd despite conventional treatment. so that is something that is new in this population. in terms of respiratory disease, we are seeing an onset of a structured airway disease beyond five years after exposure. we are also seeing bronchial hyperactivity persist over a decade, and that something new. in terms of asthma we have seen patients in our program who have asthma who have lost full-time employment because of their asthma, more than we've seen in the general asthmatic population. so there are a number of findings that we are seeing in 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. another thing, you said there 71,000 people in the program. what's the criteria? did you have to be on time for so many days? or did you have to actually be in the rubble? >> the simple answer is to zadroga act is highly specific about the criteria for eligibility in the program. and it includes for let's say for new york city police officers location, federation of their exposure, and other factors. so eligibility criteria are pretty well spelled out in the act. >> what about the non-public safety personnel who can be in the program speak was right. there are criteria for eligibility for volunteers that came from all over the country to volunteer as responders. similarly in the section of the act has to do with survivors that are eligibility, five levels of eligibility requirements for survivors. so if someone comes to a program, wants to be a member the first step is filled out an application in which, only the application unfortunately i might add in which all of that information is solicited so that we can establish whether or not their experience meets the eligibility requirements of the act. >> i think some concerns as we have debated before, i want to emphasize this, anywhere in terms of health care and people getting the care they deserve, i know our number asking the question why is it a separate and unique program. you've given me some really good things to think about so i appreciate it very much. i yield back. >> the chair thanks the gentleman and now recognizes the ranking member of the full committee mr. pallone five minutes for questions. >> thank you, mr. chairman. dr. howard the world trade center health program lives on centers of excellence provide most of the mark and medical care to the program come and those centers conflict commissions that about specialist knowledge base indeed express in treating the unique physical and mental health needs of 9/11 responders. i know you talked about this. i'm following up on what mr. guthrie said. i know patients in the new york city metropolitan region continue to see their personal physicians for their general health care needs but often up in monitoring and treatment services for the conditions at the centers. i also understand that somebody's in another part of the country they can go to a network of doctors that are provided through the program. some of them also come to the centers for i know at the new jersey centers we get people from all of the country that will travel just because of the expertise that exist. if you could comment on the treatment benefits of individuals using the centers rather than their personal physician for the 9/11 related health conditions, or even traveling when they can see someone who is part of the wtc network, they come to the centers. >> i be happy to. i think it boils down to the difference in positions in terms of expertise, as you said. occupational environmental positions who are schooled in a particular subspecialty know how to connect and exposure with the health condition. when i went to medical school i did not learned that. i learned how to take care of the health condition. i didn't learn to go back and do an extensive history to try to figure out what were your exposures, and was about exposure related to this health condition i see? that's a specialty of occupational and environmental medicine where we try to correlate the exposure and health condition. so physicians that we use both in the ccd is that have been involved since 2001 and in a nationwide provider network have that capability. physicians that don't have that capability would not be able to listen to the patient system and able to say yes, your exposure, i'm going to make a determination that your exposure caused a health condition or contributed to health condition or aggregator that health condition. >> i'm trying to speak up because of ask you a few more things. have there been any problems with this diagnosis or improper trading of 9/11 related health conditions when individuals have relied on their personal physician? >> not that i'm aware of. within the program of course we have a quality assurance when they look at all of the care. >> can uss gridley have a a clinical centers of excellence coordinated the care to respond and survivors at the centers, care delivered by the personal medical provided outside briefly speak with as many of you know, the world trade center health program is a hybrid program. it is not your normal health plan where you go in and everything that you may complain about relative to your body a physician takes care of. we have a limited number of conditions. so many condition we don't cover so you have to see an additional physician, your personal physician. that coordination is done in the cc so if those cce physicians a condition that we do not cover, and appropriate referral is made. >> okay. i'm going to try to summarize this last question. by concern is under what this program terminated before we have an opportunity to reauthorize it. that's why we're having this hearing and trying to move quickly. but in preparation the real physician legislation is not signed into law by september of next year the program is terminated. and in preparation for termination or possible termination i understand hhs hhs has certain of this requirement just to follow. can you just tell us what you have to do? this is what we want to happen but i want to stress that there's always that danger. >> it would be a nightmare for me personally it would be a nightmare for our members, a nightmare for our cce physicians. you cannot abandon a patient ever as a care provider. so we must ensure that the patient is taken care of somewhere. and finance play for each of our 71,942 members would be a gargantuan task. >> and notice requirements how -- >> we have to inform our patients ahead of time that this may have been even a we may not be sure that it is happening and certainly when it happens. and all of the efforts that we can make to help them support their efforts in finding additional -- >> but when does that process to begin? >> and 90 day time limit is sort of an unwritten notice requirement. it can vary state-by-state because these are often state laws. but we have to go back and look at, since we are have members from every state we would have to look at every stage the abandonment requirement. >> thank you very much. thank you, mr. chairman. >> the chair thanks the gentleman and now recognizes the gentleman from kentucky mr. whitfield. >> take you very much. dr. howard, thank you for being with us this morning. i want to just follow up briefly. we think about health care systems, frequently people will work with some company that provides health care or medicare, you've got to be over certain age medicaid, income below, treo or tricare. so here the common element is people from around the country, whether emergency responders or volunteers came to respond to this emergency in new york, this disaster on 9/11. and you touched on the criteria. i think you've indicated that our 71000 loss members enrolled in this program. and if it's still eligible come if i'm so in come if i'm some that were put there during that time, would they still be able to enroll today? if i'm not enrolled right now? >> yes sir you would be. and we'll anyone is listening who is not enrolled in a program who may be eligible will call our eligibility line and sign-up for our program. >> and i won't get into the details, but the criteria for eligibility, i'm assuming you had to have been there exit days, is that correct? >> right. i very detailed husband requirements spelled out in the act itself. >> and does your office make the decision on whether not a person is eligible or not? >> yes, sir. >> now of the patients that you are caring for right now what percent of the would you say or maybe you don't have this information, had insurance program already, they're already covered under? >> first of all even if you had health insurance, as the responder you would not be able to use that insurance because health insurance does not cover work-related issues. for instance, if you ever gone in for an mri or ct scan, at the bottom of that form it will say is this the result of an auto accident? is this result of a work accident? if it is the health insurer will pay for it. they will refer you to other insurance. for survivors, then health insurance could be an issue and then we've make up as much as we can from health insurer. >> what percent would've been covered under say workers compensation program? >> theoretically, work-related injuries and illnesses would all be covered. but there are great difficulties for responders in accessing worker compensation benefits because oftentimes their condition, 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 onset or years later and a lot of statutes draw a line and say no, that's beyond our statute of limitations, we will not cover something that started five years later. many of our members are in debt situation. >> would it be unusual that workers can't may pick up part of it and then this program would pick up stripling and supplemental rolled? >> it's not than usual. many of our members have had worker's compensation benefits over in the process of recouping worker's compensation. but it is not the majority or even near the majority of our members. >> we know some people have indicated early on i remember when those first discussion about this, but this was a unique program but i know there's health programs in effect for employers at savannah river, paducah, oak ridge and so forth which is kind of similar to this because those workers were exposed to certain elements, many of them were not even aware of and taking them with a lot of different cancers. so those programs are similar to this program, would you say? >> yes, sir. in fact, we administer the energy employees occupational illness compensation program together with the department of labor and the department of energy. it is a program that there's a lot of similarities to our program at the world trade center. >> so if you work at the world trade center as your covered and you have one of say 12 of 14 illnesses that you all set out and is there a presumption that since you were there and expose that you would be covered under this program? >> not a presumption. a physician, not in the administration of the program but in our centers of excellence would examine you, take your history, and make the connection between exposure history that you give that physician and that health condition and that they and they alone say i think the two are connected. >> well, thank you very much for the great job you do at niosh. >> thank you. >> a chair thanks the gentleman i now recognizes the gentleman from oregon, mr. schrader. >> my questions have been answered, mr. chairman. thank you. >> than the chair recognizes the gentlelady ms. castor, five minutes for questions. >> i want to thank you, mr. chairman for calling this hearing, and i'd like to thank all of the first responders and survivors in the medical profession who take care of them for traveling here to capitol hill to encourage the congress to provide some continuity and certainty in the world trade center health program. i'd like to thank my colleagues especially from new jersey and new york, congressman vallone and congressman plans. you all have been champions on this committee -- alone. along with congresswoman clarke and congresswoman maloney. i see -- in the entire new york delegation especially. i strongly support the james zadroga act 9/11 health compensation reauthorization act because it will provide a fact importance of the and continuity of care from this point forward. and it's interesting to see the list and understand that there are first responders and survivors from the world trade center terrorist attack all across america now. and florida comes in right behind new york and new jersey, it would be very important and i think that the folks at upper% back home will be strong in support of taking care of the neighbors who were there on september 11 and the weeks months and years afterwards. it is a vital that we continue this special is care for all of our neighbors and all the great folks who were there on september 11. so dr. howard, thank you for being here today but what are the important parts of the world trade centers zadroga act that often gets overlooked is the funny provide 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 that has been funded by the zadroga act? >> be happy to. we are very grateful for the original drafters of the legislation to provide money for research into the health conditions that are members raised their estimate you before we already learned quite a bit from that research. and i'd like to highlight just one aspect of it in addition to mental health and respiratory and cardiovascular and our cancer research, research and autoimmune diseases and others, is the research that we do not individuals who were children at the time of the 2001 attacks. there were a number of elementary schools and high schools that were injured impacted. we are the number of those projects are going on now about seven that are funded and we are learning the effects on developmental issues the children's population. debate we funded a to $8.5 million worth of research and we have a significant body of research that is published in peer-reviewed journals, the world trade center registry alone has published about 60 papers, and our various clinical researchers at our clinical centers have published the other papers. our pivotal papers in cancer autoimmune diseases, asthma and other respiratory disorders have allowed us to provide better care, more focus care for our members to introduce a result of the research? alvida sein in an organized way to the providers in the families so that they have access to all that information speak with you. we have membership and newsletters that highlight various findings we have from research so they know. all of our papers are published on the world trade center health programs website. these are all peer-reviewed so they appear in science journals and happy to say that the new york media picks up on those papers and reports of them probably more effectively and more widely on our website. >> so if the zadroga act is not reauthorized will these research efforts come to an end and it's going to be why that would be harmful speak what they would altogether and we would lose one of acting the most important advantages of the program to our society is looking at the long-term health effects from 9/11. >> you testified earlier that health conditions often manifest themselves years later. the zadroga act provided funding for outreach efforts to individuals who may be eligible. we are now several years into the existence of the program and you have successfully enrolled more than 71,000 responders and survivors. it seems to me that in addition to outreach, the continuity of care and retention of members will be important for protecting the health moving forward. that's why the reauthorization act clarifies that funding may be used for continuity of care and retention. give me your opinion on why efforts on continuity of care and retention of members will be important moving forward. >> as you say, our program over all, since its inception in july 2011 with the zadroga act has grossed about 80% over all and membership. we credit back to the wonderful contractors that we have done recruitment. but the other side of that is once you recruit a patient into our program we want them to remain in the program. every health plan loses members because we do not go and get outraged to retain them. so that's unbalanced now for our first five years. we hope to emphasize and what we hope is our second phase that retention of our patient population is as important as the original recruitment. >> how do you propose to do that for first responders and survivors outside of the new york-new jersey area, say into 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 responders steering committee which is very active in these every month and we have a committee that is very active and meets every month for all of our ideas, suggestions, we go to them and say how are we going to do this? and together as a group we figure out how to do it. there are many modalities that we could use, and oftentimes we are told by our members what is the most effective. >> thank you very much. i yield back. >> now recognize the gentleman from texas, dr. burgess five minutes for questions. >> thank you, mr. chairman. thank you for having enduring. dr. howard, thank you for being here coming to all of witnesses on the second day of thank you for your participation and the people who are hearing testament to the work that you've done. i also feel obligated to recognize the work of one of our colleagues, a former member who is on this committee with us and, in fact, was responsible for my early interest in this shortly after i arrived in congress and 2003. it was because of that interest that did become an early supporter of representative king's work on this. and, in fact, i was the one who ran the bill on the floor in the waning days of the 111th congress in that light lame-duck session and to send when the bill finally passed on the floor of the house. but dr. howard, i'm interested income you said in your testimony that you provided for us today that certain types of cancer were added to the list of health conditions covered under this act. could you share with us what those cancers can what types of cancers those words our? >> yes. currently covered in the program are every type of cancer is the sure way to approach this from every type of cancer except uterine cancer. >> but are there those that are more, if you were to pick the top three malignancies, what would those be? >> i think if you look at our 4000 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's our top cancer. there is breast cancer. that's also a top cancer force. there's colon cancer which is a top cancer force. thyroid cancer is another cancer for us. but we seeing a lot of very common cancers like that and we've also seen some very rare type of cancers. and oftentimes from an epidemiological basis the appearance of rare cancers is extremely helpful in terms of doing research on a population to figure out what their exposure to our causing rare cancers. >> that speaks and also to the value in having people have expertise in treating the type of injuries encountered because an uncommon cancer can be a difficult diagnosis at which to arrive. >> exactly. and if this were distributed would not be able to count those. it would be very hard to find all those rare cancers if they were not come if the patient's were not seen in a clinical centers, and rather they were seeing their own personal physicians throughout the 10-acre it would be very difficult to do that spirit and provides a focus that otherwise would not be available. just so far as a brief comment if you will on the observed versus the expected cancer rates of the population that you are following. is this number, i guess i calculate it to be 6% based on the number of patients you are following in the cancers the reported. how does that stack up to the general population? >> that comparison i'm afraid we can't do at this time. that would be something we would have to wait and see what our researchers could come up with in giving us that kind of number. we are now looking at and the fire department of new york city is doing some research using as a reference population to compare our world trade center firefighters to another cohort that was assembled by the institute of firefighters not involve in world trade center. so we hope that line of research could answer your question someday. >> so it would get a better control if you h. match for people who are in similar occupations. >> yes, sir. >> switching gears a little bit and you mentioned that you're trying to aid not just the individual members but help grow the body of evidence and the body of information. so that you can help in other situations. are you going to be able to provide feedback to municipalities and boroughs as to the type of workers compensation coverage that may be provided to members of the firefighting community, or the type of health insurance that's provided? some of the shortcomings you mentioned were within the workers compensation system. are there lessons you've learned that can be extrapolated to other communities of? >> certainly. i think new york state itself its legislature and governor have already responded to this issue significant by providing a mechanism by which responders, survivors can sign up to a program. they don't have to actually make a claim but they can register com and if they they should develop a condition later on that the 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 these long duration disasters. >> thank you, mr. chairman. i yield back. >> the chair thanks the gentleman i know recognizes ms. schakowsky, five minutes for questions. >> mr. chairman, i would also like to thank 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, but the trauma of the incident and the loss of friends, coworkers, family is something that lingers on for over really. in illinois dr. howard, there are 131st responders come in between one and nine survivors the way the data is capped between one and nine enrolled in 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's physicians that have one or two et cetera. so how do you maintain that, the cohesiveness of that network? >> i think that's a very good question. i think there's a couple of ways that we do this. first of all our nationwide provider network is headed by a very capable physician who is part of our new york-based centers, new york and new jersey-based centers of clinical excellence. so he participates in all of our meetings and is a great educator and teacher for the cadre of physicians that the monitoring and evaluation of that population come as you pointed them position of only one or two big those positions themselves are occupationally trained. so that the same kind of thing to be able to connect exposure and health conditions as simmer situated physicians at our centers. we have been very pleased that medscape is helping us put together constant training, so to speak, 24/7. you can go to the website and get information about the latest findings from the program that may influence your practice. so even though we have a stupid network and even though those positions in the nationwide provider program matt baisley what occupations they are seeing, we want them to be a similar situation now twice as the rest of our physicians. >> great, thank you. by understanding on the date is that you are a total of 71,000 people approximately, that are in the program. and then it says more than 30,000 responders and survivors have at least one world trade center related health condition. so there are some people in the program i gather that are more than half that are simply not simply but that are being monitored? is about the difference and never? >> yes, yes. we offer monitoring and treatment. so if you're 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're not in treatment. there is no condition that a world trade center physician has connected to your exposure. so they are -- >> at the monitoring is done within the network and there's not an additional cost to the individual for the monitoring? >> no. our members bear no cost. >> so the population that use or include some number of families of come or spouses the firefighters. some part in that program. survivors that may be workers in the area, residents, students, day care participants, et cetera. i'm wondering what the breakdown is between first responders and then of survivors? >> in terms of enrolled members and a program? so currently total enrollment of the population as you say this 71,942. general responders which would be police, construction workers, firefighters volunteers again from all over the united states is about 38,953. our fire department members are 16,569, which leave 8133 survivors in the 71,000. >> does anybody leave the program? aside from the issue of reenroll but. did have to reenroll ever your? >> eyes are? >> they have to reenroll? >> no, no, no. your enrolled once in a program. >> does anybody laid? >> i hope not but i do not know that for a fact. we have members who have passed away, but leaving they may goes to, as has been said, by representative alone they may go to the private physician to obtain health care for other non-related physician. >> thankthank you very much. >> chair thanks to gently and a reckless gentleman from new jersey for five minutes for questions. >> thank you, mr. chairman. i don't have any questions but i want to thank you for what you're doing, dr. howard. i want to thank congressman pallone was work 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. and my son was playing freshman high school football and he had a teammate whose father didn't come home. i lost a princeton classmate in the south tower, and my story is similar to the stories of many. i think the best speech that the younger president bush ever delivered was on september 14 at the national cathedral, where he said that this world god created is of moral design grief and tragedy and hatred are only for a time. good does remembered and love have no end. and he concluded by paraphrasing st. paul to the romans, that no evil can separate us and god's love. what you have done is based on good is remembrance and love and that is certainly true of the first responders. i thank all of the first responders come and enter this legislation will pass unanimous here and on the full committee on the floor of the house. mr. chairman, i yield back the balance of my time spent a chair thanks the gentleman. now recognize the gentleman from new york, mr. engel, five minutes for questions. >> thank you very much, mr. chairman. i, too none of us represent new york or new jersey and surround every that wasn't deeply affected. to our 1851 people in my district who are program beneficiaries of all you do dr. howard. so we are very appreciative of it. you've answered some of the questions but i want to try to bring up certain other things. many of his -- many of us in the aftermath, mr. lance just mentioned that was the friday after the tuesday of the attacks, many of us in the delegation went to the site of the attacks. it was so real. you just scratched your head and you could with you are really come it was like a nightmare. he couldn't believe you are really living it and then you realize every few seconds, this is real. and we walked around, other people walked around. we really were not wearing a mask. they did give us a mask but it didn't make it seem as if it was that important so i bet a lot more people got exposure. i went back several times. i don't have any ill effects, thank god the people who are now starting to get the facts he would have trouble tracing it back to, is it is it typical for people to prove so many years later that the illnesses are a result of exposure they got at the world trade center site? >> it is a difficult. it's difficult for any of us to recall exact details at the weekend a month ago, a year ago let alone this many years ago. so for new members coming in our program, a lot of the questions that we ask about their exposure is, the ever difficult to answer. recall is imperfect in all of us, but we take that into consideration. in terms of the questions were asked and answers they give us. >> first of all doctor, thank you for the great work you do really great work. makes me proud to have been an original cosponsor of this legislation undertaken all the years i've been in congress i've never seen our delegations more united on one thing particularly the new york delegation. since the program has been continuing obviously we discontinue you see what works and,what doesn't work, you make adjustments. what would you change in the program? what have been some things you have done difficulty with that perhaps we should consider modifying or changing to make it more efficient? >> i don't think that we found anything in the act that has been a showstopper for us in administering the program. we looked at all of the items in the act as helping us and we consider the act to be a well-written document that's given us a road map, and for so many years, for over a decade we had no authorizing language. so we made it up as we went along, together with our clinical centers of excellence. so we are extremely happy to have this authorizing outlined for us. >> how much flexibility exists with regard to the world trade center health program eligibility requirements? for example if someone needs nine out of 10 benchmarks but is desperately need in -- in need of care can exceptions be made to ensure kerry gets to those who need a? how does that work? >> we look at every case on a case-by-case basis. as i said recall is a perfect this many years later and we take that into consideration. we only decide that someone is not eligible we are absolutely certain that they do not fit any of the stated criteria in the act. if we err at all it's on the side of including someone in the program. >> in your written testimony you noted the work that's been done 30 world trade center health program. the impact that 9/11 happened should understand that the program has funded research projects to examine the effects of nylon or the physical and mental health of children and adolescents. can you talk about that? >> first of all we are very privileged to have a number of researchers in new york who are interested in this area of pediatric research for 9/11. as i say, we have seven projects that are funded in this area. they have not been completed as yet, so we are looking forward to those findings. so i can't report today about what those studies are showing. but it's important that we have them and they continue, and we are very privileged to have a couple of very good researchers working on that. >> thank you, doctor. and again thank you for all you do and we are 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. >> the chair thanks the gentleman to understand dr. bush on doesn't have any questions the chair recognizes mr. brooks from indiana for five questions. >> thank you, mr. chairman. dr. howard, i'm a former deputy mayor of indianapolis in the late 90s and we hosted the world police and fire games in the summer of 2001 before the 9/11 attack. the remaining new york new jersey firefighters and police officers who perished in the attack. new york firefighters who perished at participate in those games. but we also had a group called task force one that traveled from indiana to the world trade center, and i have since learned, because of his hearing, that we have 53 people in the state who responded. i have 12 in my particular particular district come at a much of a particular treated 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 engineers and technical experts and research dogs traveled immediately that day and continued to operate around-the-clockaround theclock with all of their brothers and sisters in new york. there was a story several years ago about an indianapolis fireman and a member of task force one charlie gleason who was deployed. and he said in that tv story, he said come and i quote he got a little bit of the world trade center cough. from that mix of the fumes, but he said that he would gladly answer the call again and we understand the risk but we have to take care of the men and women that are going to continue day in and day out to risk their lives for fellow citizens. and i want to thank you and all of the men and women who are here today for their service and all the men and women around the country who did answer that call. i'd like to ask you what you lose sleep about with respect to this program, what are your greatest challenges? defensive end incredibly well so many questions posed to you what would you say are the greatest challenges facing this program that we must reauthorize? and how do you plan to respond to those programs, or those challenge of? >> the biggest thing that worries me is that i would have to spend any amount of time waste of my time closing the program as opposed to growing the program. >> and the manner in which you plan to grow the program, how do you plan to do the? >> one of the issues that we face in the program, and to think i can speak for all of our clinical centers of excellence directors and our national nationwide provider networks is when the bill passed the president signed it on january 3, 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 1, 2011. but i think what we've done over the last five years and we hope to continue to do is quality improvement of the services we offer. our pharmacy benefit plan for instance, and other support for our members. we want to receive their input so we can continue to improve the program. >> thank you. thank you for your service. i yield back spent the chair thanks the gently, that recognizes the gentleman from new york, mr. collins, five minutes for questions. >> thank you, mr. chairman. i, too, want to recognize our first responders. you think anytime you come as you have, it just helps members of congress in the windows going to be a bipartisan support as previously stated to unanimously pass this reauthorization. but first of all 20 i'd like unanimous consent to enter into the record a statement from representative dan donovan represents staten island and a portion of brooklyn. >> without objection, so ordered spent on also like to recognize representative peter king who is with me today and thank doctor howard for all you've done to you pretty much answered most of our questions that i represent 105 counts of western new york in the buffalo into the finger lakes area. i believe probably most if not all of our volunteer fire departments and were mostly volunteer, we have one paid fire department in my district, sindh individuals down to ground zero. that's what firefighters do in first responders but it's a community, a brotherhood. i'm just happy to have learned more today about how those individuals are more than likely in your program, being monitored at a think again in a bipartisan way we are with you if you are doing great work. i doubly joke would have to lose any sleep about shutting this program down. without, mr. chairman, i would like to yield the remainder of my time to representative king, if you have any comments you would like to add. >> that's appropriate, the chair recognizes the gentleman. >> at one. i do on you -- i think if all i need to sit in a take part of the thing. i think the gentleman from new york, mr. collins, for yielding me time. i'd like to say there's probably no more important deal to be passed in the time i've been in congress since 9/11 zadroga act. i had about 150 that comes from my district. more than that, i see every day to stay people with a rare lung diseases, respiratory illnesses, blood cancers. this is something that's out of the necessary to continue. i know people may find despite this may draw but that may be wrong. the fact is this is as effective as a program i've seen in all the time i've been in congress but it provides a need, is essential to go forward i want to thank all the men and women, the first responders fdny, nypd, construction contractors. i saw mr. nadler come by before. certainly people are residents of the air and it was after the call that day, and we did what had to do. and those were suffering from illnesses, people in the prime of life the again lost their jobs, have these debilitating illnesses which has changed their lives so read it all because they knew what had to be done. again i thank the chairman for holding this hearing. i think the committee for taking this issue up. i think all of you for being here today and i certainly think mr. collins for giving me the time and i yield back to him. >> now recognize the gentlelady from north carolina, ms. ellmers. >> thank you, mr. chairman. and thank you doctor howard, for being with us. i, too want to thank all of the first responders were here today. you know, a very emotional subcommittee hearing. i'm going to try hard to stick to the information and get into some of these questions. along the lines of where we are today, and a known that you have already stated, dr. howard, that as the number of affected first responders have come forward those who have been determined to have cancer, how many are in existence right now? how many are with those? what number do you have of potentially affected patients who have a diagnosis of cancer? >> will, right now we have about 3400 cases of cancer, individual case of cancer. some of those cases may represent an individual that may have more than one cancer, but generally speaking that's the number of members that we have who we are we have certified with cancer. >> as far as the certification process, i'm just curious as to how you determine approval or denial? do you have numbers that play out as far as the possibility of being approved or denied? >> sure. let me just briefly explain the process. the physician who is seeing the patient makes the connection between their exposure and health condition, in this case cancer. so they can say it is caused by contributed to come are aggravated by their exposure. that's the determination made by the physician. we don't make it in the program. that's an independent view that the physician has. then they submitted to us and we make sure that all of the supporting information is a better and then we certified it. if the supporting information is in there we have a question can we go back and forth until we are all absolute sure, including the determining physician and us, that this is a case to be certified. certification the means that you get your cancer covered for health care. >> 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? >> we have received to date seven petitions for requests adding conditions. two of those were cancer. the original cancer petition that chairman pitts refer to 001, and soon after that we had a petition with regard to prostate cancer, and invite others. with the five others we did not find sufficient scientific evidence to support their addition. we did quite a few requests for adding conditions. it's hard to estimate what conditions we would add in the future, but we evaluate each of those requests on their scientific basis. >> and then in regard to autoimmune diseases i understand that you've made a determination that those would not be identified or added. can you just expand on the? >> right. we received a petition, our last petition to add a large number of autoimmune diseases to our statutory list. we reviewed all the information him including the very excellent study that had recently stimulated that petition by fdny, and we found that there was insufficient at this time. it doesn't mean that and this is why we are emphasizing so much the importance of research funding in this program. is the additional work that is going on by other cce's and the world trade center health registry to look into that issue. so does that mean that for ever and ever it will not be added butbythis time we are not adding it. >> thank you, doctor howard. i do appreciate all of the information that you have helped us with and i'm glad to know that this is considered to be an ongoing process into the future because we don't know what the future holds for this. again, god bless all of the first responders who are here and your family. thank you so much. i yield back. >> the chair thanks the gentleman. now that all the members of the subcommittee have had an opportunity to ask questions, with unanimous consent to ask the members of the full committee ms. clarke be given five minutes for questioning. the chair recognizes ms. clarke. >> thank you very much, mr. chairman. we have enjoyed your bike congressman nadler of new york, original sponsor of the zadroga act come and i wanted to yield some time to him. >> i thank you for using. let me thank the chairman for holding the hearing and the members, so they want to say that some who, along with mr. king and ms. maloney, one of the three original sponsors of this bill, we struggled for years and years to pass it. i'm glad and they history has proven the necessity of this bill. i wanted to thank doctor howard for his wonderful service. i'm glad that the chairman has called this hearing and that judging from the comments at the hearing, there seems to be a lot of bipartisan support for extending this bill. window the necessity of that. so i just want to urge that be done and i think the chairman and the committee again, the extension of this bill is essential because the diseases won't go away. this is for both the first responders and the survivors in the community. so urge the extension of the bill. i think ms. clarke for yielding and i yield back to her. >> thank you. dr. howard, just following up on a couple of the questions that ms. ellmers asked about the condition. for the record what is the process by which you can add new conditions to the program? >> well, first of all the administrator has the ability to add a condition on his or her own motion or the other very common route that we have seen so far is the public can petition the administrator to add a condition as i say we have received seven petitions so far. two of those we've added the condition, the first one being being cancer, the second one being a particular type of cancer, prostate cancer. the other five we found insufficient evidence for? >> i understand the statute outlines specific timing requirements for you to respond to the petition. could you describe that forced? >> right. the administrator has 60 days to respond to a petition, unless the administrator refers the petition to our scientific and technical advisory committee. and then that timeframe is 180 days. .. we believe in peer reviewed very, very much and we want to do at all peer review. the timeframe of 60 days given the enormity of the task of adding all of those members of cancers is a very short period of time. we were unable to engage in external peer review. >> can you briefly tell us about the registry. it is our understanding the following individuals were as to toxins at the world trade center service attack. tell us more about the registry of why it is an important tool for studying health effects. >> the world trade health center registered up to you 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 interested me in a 70,000 members also in nablus told a directory last week that they have registering in the registry from every congressional district. all 435. they have produced almost 60 papers in this area. they followed the same people over periods of time. every so many years they cited them to figure out what their very days. their research is vital to this program. >> do we have a sense of any of their findings so far? >> all the findings are not only on their website but also bars. some of the things we have learned already of the issues about asthma, mental health, protecting ptsd has come largely from the world health registries. >> you think it's important we continue our work? >> absolutely vital. >> thank you mr. chairman. i think the ranking member. >> the chair thanks the gentlelady. that concludes the questions of members here present. i am sure we will have follow-up questions from members. that concludes our first panel. we will take a three minute recess as the staff said that the witness table for the next panel. the committee stands in recess. [inaudible conversations] >> the time of recess having expired, we will reconvene. i will ask the guests to please take their seats. ladies and gentlemen, ladies and gentlemen, please take your seats. [inaudible conversations] the committee will reconvene. we asked the guests to please take their seats and i will introduce the second panel. we have three witnesses on the second panel. i will introduce them in the order which they will present testimony. first we have dr. lucas and director environmental and occupational health sciences institute. robert witt, johnson medical school. welcome. secondly, mr. david how 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 for your patience, for coming and for your testimony. your written testimony will be made part of the record. he will each be given five minutes to summarize. you will see green first-in yellow. when read appears to be asked to your testimony. at this time you are recognized for five minutes to summarize your testimony. >> as i stared at the clinical center of excellence we have gone to six clinics in the area that provide medical monitoring and treatments for world trade center was under his. i'm a physician who is board certified enemy professor at rutgers and a member of the national toxicology panel, an expert panel that advises the national and attitude of environmental health sciences concerning the relationship between exposer to toxic chemicals in house. i want to thank the committee for the opportunity to testify concerning the importance of the clinical centers of excellence and for the opportunity to provide the best quality medical care through the act to those brave responders who suffer from multiple chronic in disabled medical illnesses including pulmonary fibrosis, asthma gastric reflux sinusitis and sleep apnea. we have been monitored world trade center patients since january 2003 and begin treating patients with federal funding starting in 2007. in addition to the aforementioned conditions over the past three years have been able to use funding under the act to optimize cancer care. this is critical since its earliest 2008 responders were already showing a rate that is 15% higher than people their age or were not at the disaster site. the rate is only increasing in our patients are much younger than usual cancer patients and non-smokers. they were highly exposed to environmental toxins as well as severe mental trauma from what they witnessed at ground zero from seeing people jump off tall buildings to their deaths are finding charred remains. i designation as a clinical center of excellence has allowed us to provide quality of care for responders by century and all their care in a convenient location with staff members sensitive to their needs or needing treatment from start to finish. the combination of program knowledge gained over 12 years of care delivery in addition to personal knowledge in new jersey has allowed us to understand the cohort of patients using medical and pharmaceutical resources wisely to accomplish the following objectives which i will illustrate with specific patient example spirit coordination of care for complex cases. treatment of patients both with physical and mental aspects of disease. uses state-of-the-art diagnostic technique for treatment use of knowledge gained in our treatment of patients to allow early intervention enabling skilled patience to stay at work. i am proud to share this panel with david howley who performed many not performed many months of church and rescue work at the site. david presented swelling in his neck in 2006 which was eventually diagnosed as an aggressive metastatic cancer of the throat. this is unusual and rare cancer in healthy non-smoking americans. however in my center w-whiskey made other patience with this cancer in new jersey alone. the mistreatment has required a team of doctors including myself as primary care, general oncologists, radiation oncologists, general surgeons because of the complicated nature of the cancer has been extremely difficult to treat but at the present time is tumor free since april 2014. the second patient i want to tell you about is a retired detective with severe shortness of breath fatigue and ability to perform duties as police officer. present at the 9/11 site on the day of the disaster reported being engulfed in a dust cloud of witnessing people jumping out of buildings. he was treated by his personal physician with five medications for his respiratory issues that no other condition. his evaluation at her center confirmed the presence of asthma but were also able to diagnose rhinitis, gastric reflux sleep apnea, posttraumatic stress disorder and panic attacks. the patient is given treatment for those positions and received therapy and panic disorder. the patient was able to recognize panic attacks are causing him to use increased amounts of aspirin medication and he would learn to control attacks. at his most recent examination he know it examination he no longer needs mental-health medications and is enjoying his retirement. the third patient i want to speak about works as a consultant to prevent tax fraud. abnormality on this cat scan czech register for for a tax skin -- cat scan. this is evaluated by a radiologist who is an expert in interpreting c.a.t. scans. she was concerned about the suspicious nature of the nodule in his growth since the original scan. the patient was referred to university surgeon en route at this stage when my cancer which does not need chemotherapy or radiation and i want to say the patient is dr. work. he's overseas looking for people is cheated the government paying taxes. finally rutgers university and why you have combined to do research finding markers for sleep apnea associated with environmental exposure. the expertise has allowed early diagnosis and treatment of abstract and sleep apnea enabling us to get people to work safely. my fourth patient is a pilot for a law enforcement agency with the history of gerd and the site is which are risk factors for sleep apnea. thanks to early diagnosis the patient has been successfully treated for his conditioning is fully qualified under federal standards to skillfully operated aircraft. he asked that take me for his treatment and i said he should continue catching terrorists. in summary all of our patients are honored and treated by a skilled clinicians. we believe we are continuing to acquire the knowledge to provide early diagnosis and treatment of emergency was wanders exposed to toxic agents and psychosocial treasures. we strive to continue to keep out foreign and cost effectiveness and treat her patients as well as preparation for the best possible medical care to any emergency responders disposed to a a multitude of unpredictable exposures. >> the chair thanks the gentlelady and now recognizes mr. howley for five minutes for your summary. >> thank you, sir. first thing i would like to do is thank you for having this hearing. it is obviously very important by diamandis people here today and it's both an honor and a privilege to be here and address here. there's a lot of things i'd like to say about this, but i think the most important is to answer a question you are basically post to dr. howard and that is what happens. dr. howard was wonderful in his answers but i think i will be more blunt about it. people are going to die. the men and women that are sick that are being taken care of now, i've only been cancer free at little over a year. i could easily and it wasn't for this lady right here, i wouldn't be here at all. to run this program people are going to die. it is a fact. it's unquestionable that is what is going to happen. i was born and raised in mr. vallone's district and lived in his district once i retired and ended a few years ago and i live in congressman lampson's district. i've size of the the aisle covered here. this is not something that should have been in political fighting. this should be an absolute bipartisan 430 to five type though. this is a no-brainer as far as one can earn. the last point i would like to make because i'm going to try to keep this brief is i wouldn't be here sitting here if it wasn't for the doctors and dr. udasin and her other colleagues knowledge, skills ability research. they have become the absolute expert in what is killing us and not just me but all the other people that are part of the program. you can't go to your regular doctor. they don't have the knowledge. they are not bad.yours. there's nothing wrong with it. what is happening to us because of the conditions we were in has become very specific and i didn't have a normal cancer and there's a lot of other people who don't have normal cancer or blood diseases. because of their absolute dedication and they have come up with plans and outline that they can treat and get us through these difficult diseases. that is the most important thing that we can have a quality of life to go forward. and i'm going to leave it at that. i'll be happy to answer any questions. they met chair thanks the gentleman and now recognizes ms. burnette for five minutes for your opening statement. >> subcommittee, ranking member grana members of the subcommittee on health for inviting me to appear before you today. i name is barbara burnett in bayside, new york. i'm 52 years old i'm a wife, mother and grandmother. with me if my husband and my son. i am a proud former new york city police detective. i retired from the department after 18 and a half years of service. my career came to an end because of an illness that develops the time i served at the world trade centers had appeared i search for more than three weeks about 23 days in total. the morning of september 11th 2001 as working in brooklyn, new york when my fellow officers and i've learned the morning of the terrorist attacks in new york city we rushed to lower manhattan the fastest way possible which was a bow. when we arrived the towers had collapsed. the air was thick with dust and smoke. i put my hands over my mouth in mr. breeze. my fellow officers and i worked all day and well into the night. we evacuated people around the site and directed them away from the disaster. there is so much stuff but i wasn't given a respirator or attention from the eyes, throat or tongue. i had to wash the debris of my eyes and throat with the hose. my officer and i am the rescue workers and first responders cannot stop doing what we had to do. the first night of the world trade center around 10:00 p.m. after 12 hours. five hours later i reported to the world trade center site at 4:00 a.m. in the morning september 12th. i remove debris by using buckets and shovels and in no time as i provided with respiratory protection. if i was not crying over what ever seen in a room commissioner stern to my face or burning irritating deaths. i spent weeks at the world trade center site shoveling, clearing debris, searching survivors and 15 for body parts of the dead. we worked side by side in hand-in-hand with iron workers, construction workers firefighters police officers. all of us remove debris together. we were moving wreckage of the world trade center. we work a night on top of the burning smoking hot rubble. the flyers never stopped burning. air quality we were told was not a concern. all of us working 24/7. the work was tough and dirty. we were choking and it was dangerous but there is never a time i thought about quitting are leaving. i thought of thousands of the dems. if i were not the removal and recovery we were glad to contribute. i live with consequences of 9/11 every day. i've been diagnosed with interstitial lung disease, hypersensitivity pneumonitis of fibrosis in my lung. the inflammation in my lung interferes and destroys the tissues to my blood. my lungs are permanently scarred. i cannot move around my home without raising her gasping for breath. i start each morning connecting to a nebulizer and inhaling multiple doses of medication. i was told i will eventually need a double lung transplant. steroid use has caused weight gain and other prescription medications have caused many additional illnesses. i've been diagnosed with diabetes, high blood pressure, osteoarthritis and rheumatoid type radius. i have suffered partially detached retinas in both eyes each requiring surgery. prior to my world trade center service that is in top shape. no history of lung disease. i never smoke. i was at a physically demanding lifestyle and career. during my time at than my pda worked five years in the plainclothes narcotics unit. these assignments required me to walk miles per day making arrests and by and bus operations and executing search warrants. i've made over 200 arrests in my career and have assisted in hundreds more. i've been recognized by the n.y.p.d. numerous times for a woman. i've also received several medals for meritorious police. i was born and raised in brooklyn new york. at that high school and college basketball. i played on the police leak moments deemed which competed across the united states and internationally. life has come very different and i became that. -- since i became sick. every month i receive care and renew prescriptions. this program saves life. it is saving my life today. it provides medical structure by cordoning doctors and medications. my family does not have to suffer a financial burden of doctors visits copayments and the terrible cost of prescription medication which i would not be available without the program. also note many firsters wonders have been diagnosed at her. many have died of cancer. he managed cancer. do not adjust your exposes unprecedented. many of the sphere of their injuries that arrive late after a toxic exposure. many directly related to the type that ground zero. cancer rates years and years later but for these reasons i urge the committee to approve bipartisan legislation before it. thank you. >> chair thanks the gentlelady and thanks all the witnesses for their testimony. i will begin the questioning by members and recognize myself five minutes for that purpose. dr. udasin, in your testimony you talk about the coordination of care that you can spend time with your patience. can you elaborate in more detail about that? >> since david is sitting next to me that's a really good role. david's condition was in such a peculiar location that we had to find different surgeons that were about to get to where his cancer was. so this requires speaking to people individually to determine who have the right expertise to actually take care of his cancer where he could get the right radiation was a big issue in david's case also because there were certain issues with how he was receiving radiation and he could better go to one place and not go to another place. the good news for david wesley had a supportive family to take care of is that their names. but we have had other patients not as fortunate as david were unfortunately we've had to help ordinate and in things like hospice care. so my staff and i would like to a knowledge by administrator sitting mayor who helps us arrange a lot of the important things we do with our patience getting them from place to place, making sure they get a good appointment. you go into a doctors office and you have enough or won't pass and then you have to go see a specialist. if you don't win by yourself, and they say you can have an appointment next november. that is the next available appointment. i can assure you when i call up you will be in by tuesday. i hope that answers your question. >> just to follow up with the coordination very important for the level of care you give, is it possible to provide the level of care before congress established the world trade than her health program? >> it was not possible to obtain this degree of care. initially -- at the end of 2003 entrée in 2002 2003 we had the monitoring program. it was frustrating because you could find something wrong with the person you really didn't have resources to make sure they got to see the correct person. i'm grateful for the funding we have now so we could do that. >> thank you gave ms. pauli and ms. burnett, can you talk about your care before and after the creation of the centers for excellence in a near view is a better coordinated? >> i was thinking of a story when you just asked the doctor a question. i am probably one of her original patient going back to the monitoring program back in 2003. the first time i went there my blood pressure was basically somewhere off her chart. my sinuses were completely blown out. i had constant infections acid reflux. she basically refuse to let me leave her office unless i went straight to my.her to get treated for the blood pressure. i am six-foot three and she is about five-foot one and i believed her she would not be out of the office. so there is a big difference and she is just wonderful. i've only dealt with one other of the doctors at her office and i've never been to any other office so i can't speak about any of them. but the doctors are just tremendous and as she was sane when the cancers kept coming back for me and it has reoccurred four times for me. she can make those phone calls now and when she says tuesday she's not kidding you. >> thank you goodness burnette which are respond to that as a patient in the program. are you satisfied with their access in the carrier perceived before and after? >> i'm very satisfied with my care. in 2004 started blocking out of work and nobody knew why. with regular doctors i was sent out for different tests. in the program this sunday to one doctor who sent me to another.her to make sure everything is covered. this schedule everything for you and it's very important to follow up what is going on and how they treat us as very well. >> thank you. my time is expired. the chair recognizes the ranking member for five minutes of questions. >> thank you, mr. chairman. mr. holly come i understand you've been eating dr. udasin says the program was established. would you explain what being able to see dr. udasin at the rutgers center of excellence has meant to you? it sounded a little bit from your earlier question. >> how do i phrase this. their knowledge that they have acquired because they have seen so many of us when i present the next set of conditions the reformer set of conditions i had come michigan tell me go see dr. xyz and not dr. abc because of her knowledge and skill in what she's been able to put together preceding so many of us, she has that template, those tools in her belt that will send me to the right person. >> you think you would be in worse condition without being at the center? >> i wouldn't be here. this year would be with someone else. the last surgery i had last year there were only four surgeons qualified to do what i needed to get done. >> ms. burnette come i understand you received medical monitoring services throughout sinai center of excellence. can you explain what care you received and wha

Related Keywords

New York , United States , Capitol Hill , New Jersey , Rutgers University , North Carolina , Brooklyn , Texas , Kentucky , Bayside , Florida , Illinois , Indiana , Virginia , Georgia , Oregon , Paducah , Michigan , Washington , District Of Columbia , Bowling Green , Staten Island , Robert Wood Johnson Medical School , Indianapolis , Shanksville , Pennsylvania , Czech Republic , Jersey , Upton , Americans , Czech , America , American , Austin Meyer , Robert Witt , David Wesley , Carolyn Maloney , Barbara Burnett , David Howley , Dan Donovan , Eliot Engel , Jerrold Nadler , Frank Pallone , Leonard Lance , Peter King , Gary Shapiro , John Howard , James Zadroga , Las Vegas , Charlie Gleason , Ted Henderson ,