 Good morning. I want to thank everybody for coming out today on this important topic. Again, the title, Toxic Legacy, Has Agent Orange Hurt the Children of Vietnam Vets? My name is Mike Hicks and I'm a military reporter for the Virginia pilot newspaper down in Norfolk. And I'm going to tell you a little bit about how we came upon this topic and how we got here. This year the newspaper spent, I and several other staffers spent several months retelling the story of the Vietnam War 50 years after our first ground troops arrived in country and 40 years after the air left out of Saigon. And in the course of that reporting we talked to dozens of Vietnam veterans, got, you know, heard their stories about their time in combat and we chronicled those over the course of several stories. And we also talked to them about what this war has meant to them and to society all these decades later. And something that came up again and again was Agent Orange. And we were, I was surprised to learn that there are still unsettled questions about the chemicals and its impact on veterans health. And in particular it introduced me to a topic that I'd never heard of before. The idea that a children, a child of a veteran who was exposed could be harmed somehow. And as we looked into that we ended up linking up with ProPublica, a nonprofit journalism organization in New York. And we've been digging into this question for a year. And what we've found to this point is that there's still a lot that isn't known. There are thousands of anecdotes across the country of veterans and their children who feel as though, you know, the proof is there. I mean they live these struggles. But the science for whatever reason has not, ProP, has not bared that out yet. And there's a ton of research that just hasn't been done. And so today we're here to talk about that, to talk about what we don't know, what we do know. And, you know, once the science does show if there's a link, what that means in terms of society's responsibility to the child of a veteran, you know, someone who did not sign up for war but is somehow affected by it. So, and in case you have any doubt about the passion and, you know, the way people are affected by this issue, we have people in here today who traveled from, as far as the North Carolina border from Pennsylvania, one family, father, daughter traveled here from Mississippi last night to hear from policy experts, researchers, VA official, to figure out what, to be a part of this conversation. So thank you all for being here. The way this will go is we're going to hear a couple, you know, firsthand stories. And then we will transition to a panel discussion. And then at the end, there will be time for question and answer audience Q&A with the panelists. But first here's a video from one family affected. And I'm told just to give a disclaimer that this was recorded over the phone so the audio crackles a little bit. But she'd be good here. Mother said to the surgeon, my husband was exposed to age nor she was heavily exposed to dioxin. And the surgeon looked up and said, did you say dioxin? And my mother said, yes. And the surgeon said, that's the problem and called the nurse and ordered an emergency CT. My father was James W. Clifford. He died in 2011. He was 64. And I can remember being little, like six or seven little and thinking Agent Orange was a person or that Agent Orange was, you know, like a ghost. My brother was born in 77 with spina bifida. Agent Orange related AO spina bifida. And at that point, Agent Orange became a topic of conversation in my home. My brother had a little over 60 surgeries in his lifetime. He died at 34. What happens when you're in a children's hospital in the 70s and 80s is that you're on a ward and everybody else has spina bifida too. So you end up on a ward where everybody's got the same problems, right? Everybody has somebody who's in Vietnam. Everybody's got spina bifida. So I also think that there was, you know, well over a decade of just a lot of talk among the other parents about where they had been, what was going on with their kids. He felt deeply guilty about something that was not his fault. He didn't want to talk about it. Certainly not with my brother and I. He felt responsible. My father was killed by his service. It's not even something so innocent as friendly fire. Something that was known, understood, and done on purpose. And at the very least, he has earned the respect that comes with an admission of guilt. So we've been looking into this issue. I knew these tapes existed. I knew my parents had been there. Sorry guys, technical issue here. When he was in Vietnam and I searched for 15 years. I got you. So we've been looking at this issue for more than a year at this point and, you know, asking a lot of questions and some of you may have seen a couple weeks ago, we kind of introduced the topic by publishing a story of one child of a veteran who has a lot of questions about this issue named Stephen Katz, a photographer I work with at the Virginia pilot. And he's going to come up for a moment and just kind of share part of his story and why this is important to him. I'm going to apologize. It's not the natural habitat of a photojournalist to be in front of the room. I'm more accustomed to being behind the camera. Back in 2009, I was working with an NGO called Physicians for Peace in Vietnam. And I began work on a bit of a side project that I had started years earlier in the Philippines on children with hydrocephalus. And just because of a translation, a little miscommunication, I was taken to an orphanage full of children who appeared not to have hydrocephalus. And it was the type of place where nightmares are born. It was just a dark, very, there was no, the only light was ambient light coming in from just these sort of little windows in the cement walls. And I remember particularly photographing this one child who was in a sort of a fetal position wearing diapers and just sort of playing with a little piece of red yarn. And I'm photographing her. And one of the people who worked at the orphanage comes up behind me and said to me that she was 34, 35 years old. And I was, you know, I've photographed some pretty shocking things in my life that really just kind of blew me away because I wasn't very far from the same age. And I'm being told that this was an orphanage. I thought these were children. These were people that were in their 30s and, you know, they were completely non-communicative. They were hitting themselves and moaning and just going to the bathroom on the floor. I just, you know, I had to know more about this and we were able to track down a woman who was affected in the same way physically. But she had all her faculty, she was brilliant. And that started a project for me, a documentary film project that took seven years and we had released the film last year. But what happened was I was feeling really terrible while I was in Vietnam and just weeks after I got back I needed to have emergency open heart surgery. I had open heart surgery as a child. I was born with a heart defect. But, you know, it was just, you know, I took it for granted. You know, growing up, you know, I had a heart problem. I developed other health problems and I was just sort of the sick kid of the family. You know, I have older siblings, but I became estranged with my father when I was seven. And so I really didn't know anything about him except I knew that he served in Vietnam and, you know, that he and my mother had a terrible divorce and that he was basically the boogeyman. So, you know, again, like I just took for granted that I was sort of the runt of the family, the sick kid and just, you know, spent my whole life, you know, dealing with health issues. And it was only when I sort of reconnected with my father 37 years later that I had found out his exposure to Agent Orange. And the irony is, you know, here I am working on a film about second generation Agent Orange, you know, victims in Vietnam. And really, you know, Agent Orange was not on my radar screen. It wasn't something that I was pursuing, something that I really knew very much about. You know, I was learning more and more as we were doing this documentary film, but then to learn that I may, you know, in fact be personally affected. And it was only until I had a son and things with my health had been changing. I went to an endocrinologist from, I have a bad thyroid and I was having some symptoms and I remember asking him, Doc, do you think I could have diabetes? Because I did what everybody does, you know, when you have symptoms, I googled him and he looked at me and he kind of giggled and he was like, no. And I was like, are you sure? Because this and this and this. And he's like, you were in my waiting room, right? And I was like, yeah, he's like, you don't look like any of my other patients. And he's like, look, you're tall, you're fit, you're trim, you're young. And I was like, well, while you're doing the blood work on my thyroid, do you mind just checking? And three days later, I get a note saying, you've got diabetes. And, you know, it was shocking to me. A couple of months later, I developed a form of neuropathy in my hand. And so rediscovering, like being reintroduced to my father became sort of a change between learning who I was and now wanting to learn what I am. And it's particularly, you know, motivated because, you know, I went to my son to find out what's going on. Sorry. So, you know, this has become as much of a story that I'm working on to something very personal and something that I believe in very strongly. Because, you know, if there's something wrong with me that I don't know about as well as my friends now, it just seems the right thing to do just to be straightforward. And that's why I'm very blessed to be working with extraordinary truth tellers like Mike and Charlie and the folks at ProPublica and my colleagues at the Virginia pilot. You know, I just hope we can try and figure out why so many of us are so sick and just don't know why. So anyway, thanks for being here and I appreciate it. I'm going to introduce them. So I'm delighted to be joined by such a distinguished panel today to talk about whether or not there are multi-generational health effects of age and orange. And I think it's important to note from the outset that Mike and I are going into this wanting to answer questions that are coming in with the preordained mindset about what there's a lot of open questions about. But that's why we've gathered some of the top minds to talk about this and brainstorm and just learn what there is that's known and what isn't known and how this all fits together. So let me introduce my panelists. Next to me is Dr. Linda Spoonster Schwartz who spent and served two tours in the Air Force during the Vietnam War as a nurse in Japan, right? And subsequently conducted research on age and orange. And that predated her time at the U.S. Department of Veterans Affairs where she is the Assistant Secretary for Policy and Planning. So she approaches this with a multi-tiered level of understanding and so we're very excited to have you here. And in your role at the VA, you provide the VA decision-makers with advice and counsel on matters of policy and organizational strategy. So thank you for being here. Next to Dr. Schwartz is Rory Riley Topping who is the founder of Riley Topping Consulting where she provides strategic solutions to her clients using her knowledge of veterans' law and policy. And she sees things similarly from a variety of vantage points, having served at the U.S. Court of Appeals for Veterans Claims as a law clerk, having served time with the National Veterans Legal Services Organization and similarly serving as staff director for one of the subcommittees of the House Committee on Veterans Affairs. So she's seen this through the legislative branch, through the executive branch and as an advocate for veterans. So thank you for being here. Next to Rory is Heather Bowser who's the co-founder of the Children of Vietnam Veterans Health Alliance which is a group, as the name suggests, of Children of Vietnam Vets and it's a strong group of about 3,700, 3,800 children who are, they're created to support children and grandchildren of those exposed to Agent Orange and are committed to educating others and finding answers about possible health consequences. And Heather herself is the child of a Vietnam vet and we're eager to hear your story and those of your members. And finally, last but not least, Dr. Kenneth Ramos who was chair of the most recent panel of the Institute of Medicine Committee on Veterans and Agent Orange. And as committee chair, he was reviewing all the available research on the herbicide and making recommendations to the VA. And he's also associate vice president for precision health sciences at the University of Arizona Health Sciences and I saw recently you were named interim dean of the UA Phoenix Medical School. So a guy with a lot of different hats on. So thank you all very much. So I thought it was interesting. Last night, Mike and Steven and I were walking and we walked past the U.S. Department of Veterans Affairs building and on the building there is a saying from Abraham Lincoln which really struck me and I think is interesting in the context of this discussion. It said, to care for him who shall have borne the battle and for his widow and his orphan. And to me it was striking in the context of this conversation because traditionally when we think about war and its effects we think about people who are injured in that war and what happens to them and if they unfortunately die what happens to their survivors. And the question of multi-generational effects of Agent Orange throws a very different wrinkle into that. And in that quote there's not really, it doesn't envision sort of a conversation about a lingering health effect that isn't so much directly borne at the time. So maybe the first question is just based on what we know now to each of you do you believe that there is a multi-generational effect of Agent Orange exposure and why or why not? And I thought I'd start with Dr. Ramos. So first of all thank you for the invitation to be here. I think this is a very important topic and I think one that's not only generated a great deal of interest as evidenced by the presentations that we've had but importantly I think a topic that raises the conscious of the nation in very significant ways. So I'm very pleased to be part of the dialogue. So you asked the question what do I think in terms of multi-generational effects? I can tell you answer that question in two ways, two parts to it. The first one is I do believe that the science that we have now points to the idea that there are traits that could be carried over generations and of course that's very consistent with the whole principle of genetics, right? So it's not very surprising the idea that parents pass on genetic traits whether it be in the way of structure of the DNA or whether it be inference on the DNA that can be carried forward into future generations and in fact there's a vast field of study that's emerging looking at this very principle which is how much of the health status of an individual reflects genetic contributions that came from previous generations not just the immediate parents but even before that and there's a science that's developing to that effect and so if you take that piece of the question that's sort of that part of the answer and yes there could be multi-generational effects that come like that then if you add the piece of Agent Orange that's when the question becomes sort of a different answer because the science does not yet support the idea that exposure to Agent Orange has been associated with its good degree of certainty with health outcomes in the children of Vietnam veterans. Now the problem with that answer is that that doesn't say that there isn't an effect, right? Because as I pointed out before when I've spoken with many of you in the past the science to be able to answer the question really isn't there and we all need to be mindful of that that the scientific studies that have been conducted whether it be animal-based studies, whether it be human studies whether it be epidemiological studies have not yet provided the evidence that one would expect to have to be able to answer the question in the affirmative. I'm going to come back to you, Heather. Dr. Schwartz, do you want to sort of address this? It's interesting because I came across articles from Yale from 2000 where you were recognized for your work in this area and the headline of it was YSN Yale School of Nursing Scientists still uncovering Agent Orange's harmful effects. This is 2000, we're 16 years later. And you've done some of this research yourself. So what is your thought on if there is a multi-generational effect? Well, yes, I have done a lot of studies and one of the studies was we did a secondary analysis of the Ranshan data with Dr. George Knappel who is at the University of North Carolina at Chapel. And looking at, we were given some really good measurements of the Ranshanders were the people that actually did the spraying. And the Air Force, and I am retired from the Air Force so I was interested in exactly how much they had done. They did quite a bit with biological specimens, taken over time. And they did not necessarily analyze them. That was the big disappointment for that data and those samples. And they also used a strange, they didn't use a, the definition they used for exposure was it was not exact. It was not, it cut out a lot of people who actually had levels of dioxin in it. So let me just go back and say that Dr. Knappel and I, and we presented this, our findings to the International Conference on Dioxin. And we have found suggestive evidence that it would, what we found were two of the really basic and most important variables of the whole thing was the age of the individual at the time. And if you remember, the average age of a soldier in Vietnam was 18. So that meant that 50% of the people before were less than 18 and those who were over, so they, many of them had not reached maturity. So we found that as a variable. And we also found the number of times that they were in Vietnam and the months, the number of months that they were in Vietnam. And it was suggestive evidence. We did not go into basic, we did not have enough to really kind of say specific birth defects, but we did find that there were a higher rate in the men, the offspring of the men who served in ranching. Having said that, the science then was very imprecise compared to what we have today. And also the modern battlefield begs the question that we follow this because having spent a great deal of my life working with age and orange and being with veterans and with women veterans and the children of veterans. Let me just say that the state of the science has evolved so much better. I mean, when you think about a mass spectrometer back there, it was, well, maybe half as big as this room. So it seems prudent and pragmatic to begin to look at this, not just for Vietnam, but to look at it for the battlefields of the world. Roy, do you want to jump in on this question in terms of your perspective? Most of your work has been with veterans themselves seeking coverage. How often do you hear from the veterans about their children? And how does that shape your thinking on this? You know, we hear from veterans' children fairly often, actually. And so I think that there's enough awareness, awareness that's percolating that there may be some of these effects. And as a lawyer, you have to base your decisions on the evidence. So as Linda and Dr. Ramos both stated, you know, it's unfortunate that we didn't have scientific technology that we have today that data wasn't tested in the way that we wish that it was. But I think when you hear enough of these stories, it goes beyond coincidence to there's something here. Even today, just Stephen told a very powerful story. It's hard to sit there and hear that and say, no, not connected, no evidence. I don't think that that's... Regardless of scientific evidence and what we have and don't have, I think if you hear enough of these stories, you start to get a sense of there's definitely something going on here. Perfect to you, Heather. Join the conversation with your experience and sort of the perspectives of your group on this question. So my father served in 1968 to 1969, the year that Agent Orange was sprayed the most and the heaviest. My father's base was about 15 miles away from Benoit, which is where Operation Ranchan was based at that time. He was on Long Bend base. He served in the U.S. Army. And their base was sprayed regularly. And in general, the planes coming back from short missions from Spring, Agent Orange would oftentimes dump in the river right alongside their base and also in the ponds and things surrounding Benoit air base. With that said, people sometimes believe it's just the soldiers that were in the jungle who were sprayed. However, in this situation, their water was contaminated. So their milk was mixed in it. They showered in water that was heated in barrels left in the sun. Their clothes were washed in it. It was contaminated. And so a lot of veterans on bases also were very exposed and very made sick. I was born in 1972 after my mother had two miscarriages. I was born three pounds, four ounces. And the doctor said that if they're that messed up on the outside, they're usually that messed up on the inside. And thankfully, I'm okay. But I was born missing my right leg below the knee, several of my fingers, my big toe and my left foot, and my remaining toes were webbed. My parents had no idea. There was no ultrasound and that kind of stuff. So I made kind of a shocking entry into the world. But I'm a founder of Children of Vietnam Veterans Health Alliance. And we have about 3,700 members, 800 members in our support community. And there are stories like Stevens, like mine, like my friend Chelsea, who's here, like we live here too. Our stories are very similar, very similar stories, very similar birth defects, very similar health issues later. And I'll just add that, you know, before the internet, before, you know, 24-hour news cycle, there were stories coming from Vietnam, from our allies in Australia, and from the United States, from North Vietnamese soldiers and South Vietnamese soldiers, that there was something wrong with their children. This isn't something that everybody just got on the bandwagon and started saying. This was trickling from all these countries at all these times. And it has continued through all of this time. Neural tube defects, shortened limbs, webbed toes, missing limbs, extra vertebrae, missing vertebrae, autoimmune disorders, you know, the list goes on. Endocrine, a lot of different types of issues. And one thing I always, when I'm speaking a lot, I lead out every war previous to Vietnam pretty much, and especially, you know, you think World War II, World War I, there was a baby boom after the war. Where was our baby boom? My parents' first two born died. Where was our baby boom? So, last I checked, this is 2016, and we are a long time from the war. And what we've just heard is that there's been not enough research to answer this question. In fact, in the 2014 IOM report, it says the research into this question has been extremely sparse. Those were your words, not mine. So that begs the question, why? Why are we this far away? And we're all talking about the need for research. Like, so certainly one explanation has been raised that the technology, the capability to conduct some of this research is more recent. But at the same time, you know, as Mike and I have made calls, it's not as if all of this research is currently underway. You called for additional research. Why isn't this research being done, Dr. Ramos? You know, that's, as you know, a very complex question because there is scientific aspects to this. There is technological aspects to this. And there is policy aspects, you know, to the process. And so oftentimes, as you know, those worlds live in silos. And I think reports like the one that we put out are essentially intended to be able to bring those silos together and to recognize where there's gaps in information. So repeatedly, I think these reports, not just the 2014 report, the previous reports, you know, have called for additional resources to be able to carry out our mandate, you know, and to be able to gain some answers to the questions. Something that I think is going to be important for all of us to recognize, however, is the fact that revisiting what happened 50 years ago, 40 years ago, is essentially impossible, right? We're not going to be able to scientifically go back and reconstruct what could have happened 50 years ago. We're going to have to reconcile, you know, to that and focus our efforts on the prospective approach to this, which is how do we, taking advantage of modern technology and additional knowledge, move forward in gaining answers to some of these critical questions that we have. And so my call to action, if I may, is that we focus our energies on that. What can we do now, taking advantage of the resources that we have now to begin to answer questions related to Agent Orange as well as other military service-connected, you know, outcomes, health outcomes, you know, as you know, Agent Orange is one of the things that probably we need to be concerned about. And I think as we move forward and lay a plan forward, we need to be able to incorporate those aspects to it. The other element that I think I would answer in your question, and this is the last comment that I will make, is that we also need to recognize that occupational exposures are a very complex slew of elements, you know, and that one of the biggest challenges that we will always face in attempting to reconstruct in a study setting an occupational exposure is the fact that you might never be able to truly recreate that exposure in a way that is identical to the real-life setting. And so those are some of the caveats that we all need to be mindful of as we lay a path forward. And my presumption, given, you know, the efforts of, you know, individuals such as yourself, the ProPublica, you know, and other groups, that we, if I think, raise the level of consciousness to the point that hopefully something will happen in the years to come. So let me follow that up before I ask other people to join, and that is what specifically do you think can be answered now? So you've said what, you know, the challenges, but what are the questions that you think actually where we are today in 2016 that research can be done to provide us answers on? You know, so I think you could divide that probably into three bins, and I'm trying to stratify information so that as we all think about this and reflect on these questions, hopefully it's easier to kind of place information in the right compartment. So I would say there's three aspects to what could be done, and of course, you know, you could almost amplify this exponentially. But the first component to it is the biological underpinnings of the question that we're trying to ask. That's one important aspect that needs to be answered. What do I mean by that? A very controversial aspect of transgenerational inheritance relates to male versus female exposure. Huge, very complicated aspect. A lot of the data that's being accumulated up until now, in the context of multi-generational events, has primarily focused on the female. And so there's growing evidence that a maternal exposure, a grandmother exposure could actually impact health outcomes in the children of their children. But that same level of confidence is nearly completely lacking for males, right? So very few studies have been done studying male transgenerational inheritance. The way that males and females undergo their cycles of reproduction, as we all know are different, right? Women are born with a set of eggs that sort of they carry with them through, you know, their lifespan. Men make germ cells on a regular basis. So that's a huge aspect, you know, that provides even. So that whole framework of biological underpinnings of transgenerational inheritance for males and females is an area that we could do something about. The second aspect to it almost recapitulates what we've already done in the context of epidemiology, right? So because we cannot engage, so basically in human-related exposures, so how do we take advantage of cohorts that exist that provide a framework for we could begin to answer some of the questions? Where have we been limited in the past is that those involved in deployment, those involved in follow-up, those involved in decision-making never anticipated that we would be dealing today, 50 years later, with the consequences that we're dealing with now. But of course today is a new day, right? So what this calls for is, and I think it's something that we emphasize repeatedly in our report, and that is that we need to put in place the right structures that will allow us to collect the data that we need in a proactive way rather than in a retrospective way, right? It's very difficult to go back 50 years down the road to try to recreate what could, what might, what did happen 50 years before. But what we could do is as we think of new conflicts, as we think of new potential exposures, we can now put in place the right structures that will enable us to collect the data as we engage in the process. When that happens, then you're not going to be able to encounter the problems that have been pointed out before, which is we have trouble really interpreting the data that we had because the right measurements were not done, because the right data was not accumulated. So hopefully if we can start preempting a lot of these decision-making, we can now begin to accumulate the data that we need real-time. And part of this, of course, calls for a stronger linkage between deployment and combat, right? We cannot wait to get baseline data after the military personnel comes back from conflict. We have to be collecting data while they're on the field and even data before they go off, you know, on service. So I think that whole, you know, we're going to have to reframe the way that epidemiology is done, in this case, for military personnel, right? Because we all now know all the dangers and limitations that come from trying to collect data after the fact. And then the third, I think, aspect to your question that I think we need to think about is this whole idea of taking advantage of new technology to anticipate what the questions might be, not now, but later on, right? So start creating repositories of biological material. Start, you know, collecting data on the newest measurements that are available now on the basis of modern technology. This whole idea of precision approaches to health. And the reason for that is if we are creative in the way that we do that, we might be able then to have in-hand information that we don't even know what the value of that information is today, but that we might be able to take advantage of in the future. So as I listen to you answer that question, Heather, and as you listen to that, it makes it sound like the three areas of study that Dr. Ramos is talking about may not though answer the question that you want to know and that your members want to know, which is about sort of the exposure that their parents faced and the effect that it's having on you and your colleagues. Correct. I mean, I feel very strongly about what he's saying in the regards of I want never for another service person to have to go through the struggle to watch what's happened with their family to ever happen again. And if there are things in place that can protect our military members from something to have to go through this situation, I'm all for that. But this is the issue with the research in science and this is something that I don't think the public understands. It's research takes decades. I mean, once you have, if you're going to do a study, even if you were to find out, if we just looked at, you know, one thing that maybe Steven mentioned or one thing of me, it takes decades for each one of those things. I'm 43 years old. How much more time should my family have to wait? So yes, I understand this and this is good for the future. However, we need to figure out something here now. So we're going to have plenty of time for questions. We have a big long question and answer session after the panel. So please save the question. Dr. Schwartz, do you, you know, some vets that I've talked to and children of vets that I've talked to have said that they believe the VA does not want to know the answer to this question because they don't want to deal with the consequences of an answer and the, you know, the compensation consequences of an answer. Can you sort of address that? I think since the discussion has come up about having a study in real time today, I am, I'm, I'm not, I am, I want to be very careful what I say because I have my own feelings, okay. But the point is I have not heard one person at the VA say that. Say what? That they don't want to know the answer to this question. That they don't want to do the research because just being here and hearing again and knowing who we're talking about. I believe that these individuals deserve an answer. I believe that we need to at least ask the question and I, I believe that VA is at that place where they are saying that as well. This is the right thing to do. And although we may not have all of the wonderful information, we have some. And so let us at least take a stab at this. And it is, as he pointed out, it is a complex issue. But I am a nurse by trade. So you can see that coming through. But at the same time, there is, there is far reaching consequences for the people that are serving today. And in answer to your question, I'd like to talk about the individual longitudinal environment record. Ilar is what it's called. And it's a joint venture with DOD right now. It's been in the works for about three years. It's not ready to go live yet, but what it basically is. And I am one who believes in registries, but I believe in registries that collect data and information and don't just take names and addresses. Exactly. So that we, and I also believe that we should be looking at trends from a purely epidemiological point of view. But the Ilar will be taking the information just as you describe from our individuals who are serving in the Department of Defense, and it will become part of their medical record. Now, we're, they're hoping to go live in the next, I think, four or five months. I have been a big proponent of this because it, once we have DOD's interest, and it has to be their interest, these are their people and these are their families. And VA is a willing participant in this because it will help us. It will help us to know and to be able to do the right thing. So so many follow-up questions. I'll stick to two of them. One is, you said you have not heard within the VA anybody who opposes this. But what is the VA actually doing to conduct this or support this research? You know, if there's not an opposition, is there an active involvement in ensuring that this research involving Agent Norch is being done? Well, some of the recommendations that came out of the last study about embarking on a design, and that was a recommendation of how this study would look. I'm happy to tell you all that we're not waiting for everybody to a decision to be made. VA has moved forward on that. We are now working with the National Academy of Science and looking at what would that design look like. So that's that's pretty positive motion. And we are looking also at the last report that you produced. And I've seen many of those reports, by the way. Every two years. So I believe this is a very positive step under Secretary McDonald and with the assistance of Dr. Shulkin. This is moving forward much faster than you saw in the past. One more follow-up, and then I want to bring Rory into the conversation. The VA has a registry, an Agent Orange Registry, which gathers information from those who serve. They're entitled to an exam. And that exam has been provided now for a couple of decades. People have been able to get this exam, and it doesn't qualify them for benefits. It's detached from the benefit process. But they go and spend a day right at a VA medical center, questions get looked at. I don't know if you're familiar with this process. I'm familiar with it, but I don't think that's what happens. Oh, okay. I think that when the registry first started, it was just your name and address. That's what I was suggesting. And you were given a zero rating. So people who are coming in for these exams, that's following them, but I'm not sure. I think it's mostly to see about disability compensation more than a study. Well, what's interesting, and Mike and I were asking about this, is so far about 700,000 vats have gone through NAO, are listed in the Agent Orange Registry. And we were asking questions of the VA about whether or not research was done on those. There's a registry code sheet. So for every veteran who goes in, this is a little bit technical, but they answer questions on how many kids do you have and do any of the kids have birth defects and how many kids did you conceive before the war, how many kids did you conceive after the war, and a variety of questions. And we asked, has any research been done on it? I wish I could give you an answer, but I don't know the answer to that. But I can get back to you on that. The answer we were told is... What we were told was no research had been done on it because the VA didn't see the value in the registry because it was self-reported. And it seemed, at least to us, that this was a question which you're sitting on data from 700,000 veterans. Isn't there at least a curiosity to look at what is in there and if can something be said from it? Maybe you're not the right person to ask the question. I'm not the right person. Let me just say this. You've picked my interest in it and I will be looking into it because many of my friends served in Vietnam. I did not serve in Vietnam. And when the registry was started, we had no idea at that time what the fallout would be 50 years later. And when you talk about the self-report, if there is information documented in their medical records to verify the self-report, then it's worth looking at. Roy, if multigenerally rational effect can be proven, what is the VA's responsibility and can it afford that responsibility? As you were on the House committee, there was always a question about cost and about can the VA afford, whether it's Camp Lejeune or the Blue Water Vets, but say you're at a point where some of the stuff can be proven. What is the VA supposed to do? Well, I think that their responsibility is exactly your opening quotation to care for he who born the battle, his widow and his orphan. And so that includes the children of veterans. And as you acknowledged, we see that in all of the scenarios that you just mentioned, there are effects for family members, and if there was an unintended consequence, I believe VA does have a duty to take care of folks in that situation. And if it can be proven, then it seems like a no-brainer. Yes, cost frequently comes into play, but when you have unequivocal scientific evidence that shows a connection, cost shouldn't be a factor in holding those types of benefits up. We saw that in 2010 when VA added additional presumptive conditions. They did that through the regulatory process. They didn't go through Congress. Yes, there was an added cost, and that was always a point of contention. I'm an administrative law purist, so things that can be done by regulation shouldn't be done by legislation. And so that was an area where we clashed and saying, you know, VA, you can do this. You don't need Congress telling you to do this. You have the authority to do this. And yes, the regulatory process is lengthy, as is the legislative process. However, there's a lot that VA can do on its own once they have this information that doesn't require legislative intervention. But do they do it? Sometimes. Do you want to elaborate at all? Well, again, you know, using 2010 as an example, it was the right thing to do. Then Secretary Shinseki came out and said that several times. There have been other scenarios where, you know, the memo that you and Mike reported on that we don't know if we want to do this because of these extra concerns. So I think everybody has a hope that VA will do the right thing. They have their own challenges internally that they have to confront. But things like forums, such as the one that you're having today, where you raise awareness, I think all of those things go towards encouraging VA to do the right thing. Dr. Schwartz. I just wanted to say, because I was interested in myself in that, and so yesterday, I got from our Veterans Benefits that as of the end of the fiscal year 14, there are over 1176 beneficiaries receiving this compensation and the benefits total $20.9 million. And you're talking about children of vets. So these are children of both men and female vets who have spina bifida as well as children of female vets who are under a dozen other conditions. And let me just say that those additional categories that were given to women veterans came from a study that VA did. It was not conventionally mandated. So there was a chance. And I think that's another thing. You can talk to anybody in VA and they will have an opinion on this. But the final analysis is what VA really does. And I can tell you as someone who has come from the grassroots to this position that it is a very advantageous time for things like this to happen because there's more of a willingness and a desire to do the right thing. Dr. Ramos, you're going to... I guess the only small thing that I would add is that one way to address the question that you posed is partnership and coalitions. I think a part of the problem in the past has been that the VA has been very inward-looking and inward-focused in the way that they have handled the issues at hand. And the creation of coalitions and partnership across different sectors, including the academic sector, would be a very powerful way to begin to get at some of the coal-to-action that you're trying to incentivize in this process. So some of the vets and children of vets are discouraged because one of the points in the last IOM report had to do with spina bifida, which was a condition which Dr. Schwartz just talked about the compensation for. And you change the category of evidence for spina bifida in the children of vets from one where you said there was limited evidence to one in which you indicated that the evidence was insufficient. And potentially that could cause the VA to reconsider spina bifida benefits and remove them, although Dr. Schwartz is shaking her head. Those two things are really not connected. But that was still a bit of discouragement in the sense that after this was raged in the Children of Ranch Hand study that basically pointed out there hasn't been anything else. And so what does that tell us? Well, you have to take one step back and recognize that we are confined by the mandate that we get on the request from the VA, right? And so our request from the VA is to look at the weight of the scientific evidence and look at the totality of that evidence to evaluate whether there could be limited suggestive evidence, no evidence, or the different categories that we have. And so we're constrained by that definition. And so when you apply that call and that request from the VA, we're obliged to look at the totality of the evidence and the totality of the evidence led us to that conclusion. What that tells you is it reinforces the very question that you asked us at the beginning, which is do we need additional studies by all means? Because if you don't have the data, there's no way that you can continue to support a conclusion. But lack of evidence is no evidence at all. So it kind of makes a full circle. It does make a full circle. I just want to amplify what you said because it is kind of disappointing when you hear insufficient evidence. But what he's really saying is there is no data. There's no studies. And so it doesn't mean this couldn't be true. Correct. It sounds like it says, well, we looked at it and there's no. But there's not enough data. And that goes back, as he mentioned, to your very first question. There's not been a lot of studies of the effects of Agent Orange on Vietnam veterans or their offspring. And so it's a misnomer in a way. And it's very disappointing when you hear that. Yeah. So I have two quick questions and we're going to open it up to the audience for questions and comments. One is this one quickly, and then I want to ask the last one, which is sort of a more thought-provoking philosophical question. Legislation has been introduced in the past few congresses that would create a research center within the VA to study toxic exposures. The VA has opposed this. And is this a good idea? It is a good idea. But I think that when it comes to certain, as Dr. Ramos mentioned, the partnerships with academia, VA does not have... VA has a robust research agenda and people that are very good at it, some of them here today. But when it comes to looking at the physiology of cells and generational effects and reproduction, that may not be the forte. And so I think we all are in agreement that a study needs to be done. If the Center for Hazardous Exposures on the battlefield is housed within the VA, my major concern is that we have to have really strong language that the Department of Defense will have to also be partners in this. But when you want the most up-to-date technology, then you need to go to academia and to those people to really unravel this mystery. I think the straightforward answer to your question is, yes, it is a good idea. And just to kind of parlay on the last question a little bit, one of the most frustrating things I see when I represent a veteran is oftentimes when a claim is denied, the VA attorney says, well, the IOM said there's no evidence. And like we just talked about, that's not correct. Insufficient evidence is not the same as no evidence. Maybe there's insufficient evidence of a presumptive benefit. However, maybe there's enough evidence for this individual veteran with this family history and this fact pattern. But without fail, if it's not a presumption, they say IOM says no evidence. And you see that misquoting of these reports all the time. And so if there is more data and there is more evidence and more straightforward research that's available, I think that would absolutely help in the adjudication of claims as well. So this is a... Should there be more research? Absolutely. Obviously there's a huge gap in research in the situation and has caused this issue. With that said, there's also a lot of things that we can do right now that we'll face on the issue of Agent Orange. That would be the VA has records of every service connected individual in this country who has been connected from their service because of their exposure to Agent Orange. A survey to those families about their children. Ask. The question was posed as a VA... This is a VA listening. The IOM report stated there's a biologic plausibility with animal studies. We recommend more research. And we've been asking. This has been going on for decades. And this is... this is criminal to what has happened to our families. It's been a genocide to our families, to our fathers and to our children and now in grandchildren. There needs to be research. However, there are some very basic things that can be done right now that we can do without having to... to do a lot of other groundwork because we have information. The Agent Orange registry first day as well. Research absolutely has to happen. But parody among... among groups. The women Vietnam veterans, they did a self-report survey. The VA looked at their medical records. They looked at... they took in the numbers and came up with this list. There are 18 plus birth defects in the... so to say on this list. My birth... I have a letter from the VA that says if your mother served in Vietnam then your birth defect would be covered. But your father served so... too bad to you. The VA website itself says that the women's birth defects, children's birth defects were not caused by herbicide. They were caused by a woman's service in Vietnam. It's discrimination. Because my parents... because I'm telling you right now that they could solve and they could protect the most vulnerable of our population by simply a legislative or just a simple process of saying fairness. Why do I as a child of a male Vietnam veteran have to prove that my birth defect is caused by Agent Orange when the children of women Vietnam veterans who... I'm so thankful they get benefits and I'm so happy for them. But we also have to have fairness. Let me interrupt you there. I want to leave room for Dr. Ramos. Then go ahead. Dr. Ramos. This is just about legislation to create a research center. I was so deep in her comment that I totally lost up. Yeah. The answer is yes. This is the right way to tackle the question. And I reinforce Dr. Schwartz's comment initially which is that the attempt has to be done through a coalition that brings in adequate expertise and adequate resources to be able to ask the questions in the most appropriate and efficient way. I'm going to save my last question for after our Q&A because I want to go right now to the audience to give time for their questions. We have a microphone on both sides of the room actually. I'm going to bring it up to the microphone and introducing yourself and to ask your question. Please. Good morning. I'd like to thank the panel for the information they provided. My name is Reginald Van Russell. Senior. I served 23 years in the United States Army. I served six months in Fubai, Vietnam, and six months in Denang. Because to care for who has born the battle, this hasn't worked for me. I bought the five children. The first one that was born died immediately after he was born. Nine months. Then the wife had two miscarriages right after that. My third child that was born has mental problems. My fourth child was born in the grave. So to your question up there, is that toxic legacy hurting the children? Yes it is. But that's my child. That's my child in the grave. This is the bitch work. This is... I had to go sign to get... the VA knew that they heard us. They knew it back in early, early days. But you know what they did? They took over. They said that it took money. It's too much money to compensate us. That's my son. I served honorably. And when I put in for my granddaughter who was my son's daughter, VA denied. It's something wrong with that. It's something morally wrong with that to send us to war. And then you got all these veterans with the same problems. They have the same problems. We come back. I had a rash on my hand. I couldn't get rid of it for 15 years. It stayed on my hand. I came back with headaches. I went out to Vietnam a month. I had headaches. I was in Portrait Naval Hospital. I still get headaches today. I got a lump in my groin. It is really sad that the American government has sent our soldiers off and sprayed their stuff on us and brought us back. And our children are affected. The male and female when they conceive it takes two. What you gonna provide for the female but the male took a part in this here. The female didn't get that baby just by smiling at the man. The man had to do something to get that baby so he had a part in it. And it's wrong the way the VA is treating us today. So I want to do you have a specific question or can I ask a question based on your story? That's all I want to say. I sit here and listen all about the data and all the data. It's nice to have all that data but I'm part of the data. I got children in the grave. And I think that is so important. We should have said from the outset that one of the things that ProPublica and the Virginia pilot have done is to gather stories. So not data. Gather people stories like yours. And we've heard from 5500 veterans and their children their stories. And one of the things that we hear time and again are stories like yours. So these are real people, right? I've seen people wear buttons and I'm an N of one. I am a data point but I'm a person. Dr. Schwartz, we have heard anecdotes like this where people have extraordinarily compelling stories about what has happened to their family and it seems that perhaps those stories get lost. Let me say I can't imagine the pain that you are having and your family. Let me say that this is a new day and we are going if we can move forward with this if we can get this study I know you've heard this before and so have I. We will do this not just for the ones who have passed away but for the ones who are yet to be born. That's what people do. Heather, do you want to add a thought? Because you probably do hear stories like this. Yes, my heart breaks for you because I understand quite this is very close to home for me and for many of my friends and my family so thank you for your service. Thank you. Mokey. Hi. Mike? My name is Mokey Porter. I'm the Director of Communications for Vietnam Veterans of America and me and Dr. Ramos we have to look to the future to the future generations. I am completely with Heather on this. We absolutely want this never to happen again but there is the time for these children and grandchildren is now they need the answers they're desperate. My colleagues Rick Weidman and Dr. Schwartz have been on this trail of tears is really what it is for many many years now back and forth. We've just completed our 237th town hall meeting and we have heard stories like his and like Heather's. It's happening in Vietnam. There's no science. Why? What is it that is going to make the science happen now if the political will is not there? We have this new this loose Betty McDeckie has a National Birth Defects Registry as far as I know that's tracking scientifically Cova is doing it anecdotally. We're doing it anecdotally. You're doing it anecdotally. Have you looked at that registry? Have you talked to Betty McDeckie? This new science of this sperm epigenetics is brand new. What about the ranch samples? They're still available. Why can't we look at those with this new science? There's a couple questions here. I want to make sure we get to both of them. One of them is the ranch hand samples. You talked about how you re-evaluated some of the data. There are samples sitting in freezers from ranch handers. For those of you who are not familiar, ranch handers were the guys who sprayed Agent Orange and they're sitting in freezers and available for scientists to do research on. Is that being done? No, not my knowledge. The answer is yes to a limited extent. There was an appropriation that was made for the IOM to manage a repository of samples and to actually put a call for proposals out for focused studies that would utilize the samples. In fact, I've completed some of those studies and I'm actually working to analyze the data that we've collected from those samples. But that effort has been limited and efforts like that need to be expanded. There's no doubt about that. If I may respond to your point I definitely hear you and when I responded to the question I didn't mean to project it only to the future. We certainly should be acting now. I like the suggestion that was made by Dr. Schwartz that one of the things that could be done to mobilize the process of the data that is actually in hand and begin to mine that data and interpret to the extent that you can even if you end up raising more questions than you gain answers. But the effort, I think, is worth making. So I'm not in any way minimizing the need to have a call to action that it's got essentially two parts to it. The immediate component which is what can we do now to begin to try to get some answers but the reality of the process and the majority of what we will have to do really will have to focus on what can we do as we march forward because as I said before we cannot go back to reconstruct what cannot be constructed. I want to follow up because of what you said, Moki and Heather you raised this too. So you have 700,000 people who signed into the Agent Orange Registry where you know those people have contact information. You have a million people currently from the Vietnam era who are getting health care from the VA in the past year according to VA data. Why couldn't those people be contacted and say, tell us about your children? And why, you know, even if you can't do the samples within their blood like why even something to just try to construct something epidemiologically or through survey information to just begin expand the knowledge base? One more point. One more point and then we'll... For Dr. Schwartz. During our travels across the country and not to our veterans and their families and their communities, we have been encouraging them to do a number of things because we know that this research is going to happen and as we move along we are finding that we're losing too many of the kids and the parents. But what we're doing is asking them to file claims in Denver knowing that they're going to be denied. So the children and the grandchildren are filing claims. I think we just heard the answer to one of them. And I think that because when you're doing benefits it's just the straight away. It says the children, not the grandchildren. And I'm sure that's what they're basing. Just like as mentioned, presumptive disabilities are much easier than those that are not presumptive. So I would imagine that they're getting denial letters. But they're being kept on file so when the research shows that there might be a grain of truth. I can't answer that question but I'll certainly look into it because you raise a good question. Thank you. One last thing. I was in Oklahoma. There were three blue water Navy veterans who were served on the midway. All three of them had Parkinson's. That's an introduction. Over here and then we'll come back over here. Hi, I'm Vicki Davy. I'm a VA scientist. And I want to thank ProPublica and the Virginia pilot for hosting this. I am a principal investigator of a study called VE Heroes, Vietnam Era Heroes. It's a national survey now 40 to 50 years after Vietnam of Vietnam in-country veterans in the war theater. There are veterans in comparison to the U.S. public Vietnam generation. The major question in the study is, am I different? Is the Vietnam veteran different than the U.S. public and the other service members who served in the time but not in theater? But we are asking do your children, do your grandchildren have the best thought to be inherited epigenetically? We are asking for the health of Blue Water Navy veterans and we are asking a number of questions about the current health of all of these groups. So it's a big epidemiologic look that hasn't been done in this comprehensive way since the CDC did the Vietnam experience studies back in the late 80s. When do you expect the results to come out? So we'll go in the field with the survey questionnaires in mid-fall. We should begin to have data back and cleaned beginning to be analyzed in the following spring to summer. May I ask something? Please. So one of the good things about that's amazing and I'm very excited about that but however there's like many statistics from the VA but how many Vietnam veterans who've been service connected have already passed so it's very difficult because my father's passed and I have birth effects so that's one of the things I'm wondering is the VA taking that into... So we are doing a companion mortality study to the current health study and we will look at that. We are actually going to do a mortality study of the entire 9 million in the same way with appropriate comparisons and have more answers about that. Originally we thought that death rates were not different from the US public but increasingly I think there's evidence that they are. Now whether they're different by condition is really the interesting question. And there's also interesting evidence that's come out pretty recently about the economic effects on the children and I know that's not within your area but showing economists have looked at among children of men who would have been whose draft numbers would have been called versus those whose draft numbers weren't called and showed pretty significant economic differences in earnings over in subsequent years for children events which has been a pretty interesting finding. We will collect data on socioeconomic status in the common measure so we can take a look at that on health effects. Great, thank you. So we will be mailing surveys to a random sample of Vietnam-Vietnam era veterans in the US public beginning in the fall. Data will be returning over next winter. We will begin to have preliminary reports in the spring of next year and then research. It's a vast data set. Lots of questions. It's a long survey. It'll go on in the spring of next year's survey. It'll go on for years but preliminary will be coming in the summer. Great, we will be following up on it. You could be sure of that. We have it on tape. So, okay, please. Good morning, my name is Tom Snee. I'm the National Executive Director for the Fleet Reserve Association. Thanks for being here. A couple things that I have, and I have nothing to denial directly to is the IOM study that, yes, painlessly I've read through and it has to deal with Blue Water Navy. Now, from the VA side, they said that it is impossible scientifically that anything could have gotten out of the rivers within the territorial waters. Being a retired school teacher, yes, territorial waters is taught that it's 12 to 13 miles. It does get into the saliation process and that's a known thing. If you didn't have it beforehand, why is it all of a sudden? We also have the issue of the Australian report and that was very concrete to say the least. But this line that says no, we're not doing it is for legislation Congressman Gibson has a bill on the thing about Blue Water Navy as well as the great Senator Gillibrand up in New York. So we have this thing and I personally went with my national president who wants to be a secretary. Why did we draw the line? He goes, it wasn't scientific. My question is what do you mean it's not scientific when we know that these waters do get into the ships? I understand about shipboard processing after they go through shipyards and they get cleansed and everything but the thing is if they had it because why is the Blue Water Navy feel shunned out because they weren't boots on the ground? It's been helpful for the audience at home and those in the room to explain the context for this question which is involving Blue Water Navy veterans and the VA's policies allow for a presumption of exposure meaning that you're presumed to have been exposed to Agent Orange if you were boots on the ground in Vietnam meaning you were on land or if you served in one of Vietnam's inland waterways but for those who served offshore that you were not exposed and you have to actually show on a case-by-case basis an exposure and there is a major effort underway among Vietnam veterans to have the Blue Water Navy veterans to be presumed to have been exposed that they would be entitled to the same benefits for the same diseases as those who served on land and this has been probably is the hot topic right now when it comes to VA benefits. I just wanted to provide a little bit of context and just to give for the audience, yes there is a list of ships and squadrons and it's just not sailors but it's Marines and Coast Guardsmen who are equally involved. Mike and I have done a couple pieces on this and on our site we have a lot of information but Dr. Ramos Blue Water Vents. I guess the short answer to that very important question is that we actually debrief Congress on this particular issue and looked at the evidence. The IOM did a study related to this and the recommendations that were made is that they are at this point in time no scientific basis to exclude the Blue Water Navy veterans because although I have to tell you that in the VA's literature they actually flip it around and say there's no scientific evidence to include so when they are sharing information with Congress they said there's no scientific evidence to exclude they're turning it around and saying there's no scientific evidence to include and that's how they're... In our report to them that's essentially what we have stated. But which way do you view, as you just said it's no scientific evidence to exclude so that... We go back to the same circular argument, lack of evidence is no evidence at all and so that's essentially the place where you find yourself in trouble Part of the study actually involved the whole issue of distillation water capture and distillation and concentrating of chemicals that might have occurred and as you know from the Australian study that actually is what the evidence suggested but the reality is there isn't enough information as I said to exclude. Okay So are you disqualifying the Australian report? No, I'm actually crediting the report and indicating that while there isn't enough evidence the one study that was done to address the issue provided some evidence that would suggest that there was an opportunity for exposure. Do you want to address that Dr. Schwarz? I'm not really that well versed in the exclude and include on that I do know that they have had expanded the number of vessels that were in that category but I really I think it goes back to the and I'll go back to what I said before it goes back to when you say there's insufficient evidence in a report it makes it sound like we looked at it and all the data said no and we need to and I have begged them personally to change the way they say it's better to say there's no evidence there's no studies and we we can't answer the question yes you can't answer the question because there's no information there instead of saying it's insufficient I know I'm crying in the desert here but that's one of the things I think is a real downer for veterans when you say there is no and they're looking at themselves and they're looking at their children it is the terminology that you choose to report so we have time for these two quick questions and then I want to end with a question of my own so please thank you Charlie thank you for letting me have the opportunity to speak Mike Raghret from the chapter 415 of the Lehigh Valley Pennsylvania organization and listening to what you all had to speak about today being a Vietnam veteran 68-69 during the Tet I was a brown water Coast Guardsman who served in the Mekong Delta and in 2008 I came down with a presumptive exposure with Non-Hodgkin's Lymphoma which I had to live with the rest of my life but I don't want to harp on my issues with my current health status but listening to you talk about research funding information it sounds like the cat or the dog running around trying to catch its tail we're not doing anything as far as going forward as I look at the Vietnam veterans of America magazine every month and I see that section called TAPS and I see so many veterans my fellow brothers and sisters who are dying because of age and orange issues be it ischemic heart disease be it cancers be it peripheral neuropathy it's just endless not to mention PTSD issues and suicide rates that it's hard with all of us having that clock of life taking away so fast and celebrating 50 years now in our current time in Vietnam war so many veterans are dying away and that is where your research really should lie because without the veteran it's hard to follow the path that age and orange is going to progress with our children and our grandchildren Mike let me turn that into a question if you don't mind is there a sense of urgency knowing that the generation is moving toward an older age and may not be around let's say there is and we know that from various other studies that are saying we need to get this information now and I will go back to my original point we need to do this now because of the Vietnam generation but at the same time we need to inform the process and build the process to serve those who are serving today I mean our call to action remember it's been over 10 years so we've repeatedly been saying the idea that additional research in specific areas is needed so I hear you if I were cynical I'd say this is being ignored right if you just do your point that it's been a call to action for 10 years and we're talking today that maybe now people are listening but it's an interpretation Dr. Ramos it's just that time is just keeping on going and going and going with my fellow brother who's with me today we're at that age where so many of our veterans are passing away because of issues because of our health and we're going to be gone just like our World War II and our Korean vets are leaving us so fast we're leaving just as a faster rate than they are I think that's an important point you know my two children my two children I was blessed with that currently have no health issue and both girls are at age 40 one daughter is married one daughter refuses to get married because of issues that her father had with cancer she's afraid to get married and have children who are going to have problems but my daughter who is married with her third child my youngest grandson who had a brain clot had to be removed from his skull you know he's only nine years old right now but a couple years ago they had to remove a four inch section of his brain to remove a massive blood clot that formed but he also has attention deficit disorder he has anger issues and I can't help but feel as a responsible veteran who served this country and was exposed to Asian Orange that I have passed that along to my family and I may not be around when that grandchild reaches 50 years old, 60 years old when I came down with cancer and what's going to happen to my grand children 20 years from now and what's going to happen to those grand children 40 years from now because of issues that happened to me when I served my country thank you very much last question the Australians have done three complete epidemiological studies of their air forces their ground forces and their naval forces which is how they came to the anomaly of the naval veterans having higher cancer rate and they couldn't figure that out higher than the ground pounders all three groups were higher than the Australian general population seems to us that a good democracy does that for their armed forces who they put in arms way talking about prospectively then they can do that and I guess my question is Linda you say it's a new day for all of you why is it that VA in the last 40 years hasn't spent a dime that wasn't specifically mandated by the congress on toxic wound research and they're still not doing it today with the notable exception of Dr. Davies study which we strongly endorse so the question I ask is do you believe that we can generate a change, a sea change in the public where they demand of the congress that a complete epidemiological study be done of our troops and their families are you talking about everybody not just Vietnam not just Vietnam, every cohort I have to tell you from your lips to God's ear I hope so because the people serving really now the Vietnam veterans anyone who makes the commitment to serve this country deserves to have that kind of information available we have not looked at it we being the VA but from the other side of the perspective as a veteran that is why I embarked on this that is why I never thought I'd be looking at age or an orange but the point was too many of my friends were dying and there were no answers and so what we have come what was said previously is the political will and I'm not just talking about the congress the people of America have to want to have this kind of a dialogue they want to have this information available to them now and in the future I can't speak for what the VA is doing or not doing and what they're choosing to spend money on to discuss with one of the last questions I think absolutely this information would be useful would be helpful and likewise I hope that we see it Heather I agree I think what he says about the Australians are very very true the Australians have always been in the lead when it comes to doing research and taking their military service personnel with respect and to actually look at all issues regarding their health and welfare and Dr. Ramos last comment agreed alright so you got four agrees can I just ask one quick question I'm sorry I wanted to nip this in the bud because Doc you say things like we cannot reconstruct what happened in the past but I guess I put this to Rory isn't that sort of one of the tenets of our justice system is sort of to reconstruct what happened in the past something like a crime had occurred we look at DNA we look at things that happened in the past and we try and reconstruct to figure out if some wrong was done I mean so we can reconstruct some shouldn't we pursue it just as a form of justice I think there's certainly a component of equitable relief that when you spend so much time focusing on scientific data points the comments we've had here have said yeah we get it we need data but there is something to be said for equity and equitable relief is the component of our justice system and it's yeah maybe we don't have the science maybe we don't have the data but the information is right in front of you and even without that it's hard to say no and so I think that you're right that we do have a duty to look into that well you know I didn't say that there was no value in reconstruction the principle of reconstruction is important what I question is the gains that you're going to get from the reconstruction because in this particular case you're trying to reconstruct in the absence of any data that you could use to kind of put the pieces together and so in the absence of that data you're really not able to reconstruct you're going to use the example of the accident notice that a lot of the ability to reconstruct that you know scene really depends on the quality of the data was accumulated and the immediacy of looking into it particularly after it occurred was if you don't then DOS is going to accumulate double the evidence and if I can just follow up with one more thing I think one other thing that we can be better about in terms of some of these situations is you know we've largely been focusing on studies of the group what can we learn from studying from the group but as we've also touched upon these people are individuals and one thing we struggle with a lot when we represent individual veterans and say oh you don't have a presumptive condition oh well and they don't go into the medical history to the degree that they shouldn't say well you were only this age when you got cancer you have no family history you were otherwise healthy and there's not as much emphasis on the individual and yes maybe there's not enough to say presumptively overall this is what the connection is for many veterans but I think that we could do a better job particularly on the benefits side with focusing in on individual veterans and their scenarios to look at some of those pieces so I I would like to add one point to that mainly because I had Advocated Personalized Medicine so I certainly echo the point that you're making I should remind you that the VA is now sponsoring a project which actually is the beginnings of attempting to look at individual information and sort of mind that information so there's a lot of merit I think in the comment that you just made. So I want to give Dr. Rome an opportunity to want to introduce yourself and then please. This is going to be very short. I came to the VA just four months ago and the first day I came in Why don't you let everybody know who you are and what you do. My name is Dr. Peter Rome I'm a pediatrician and a public health doctor so I've actually worked in pediatrics for a number of years before going to public health and I'm the director of what's called the pre-911 environmental health programs in the service which is part of the Office of Patient Care Services that big name just means we basically oversee a lot of the Agent Orange and Gulf War and these things along with other deployment type medicine. The one thing I want to add is that we are currently really the day I came in again was a got a briefing on the IOM report was released the next day and it's over a thousand pages and it's a laborious the committee's work was fabulous and outstanding I think they really work we're going to be going back to them and asking this specific question about transgenerational effects we were able to get permission to get another volume of the Agent Orange done in the next year hopefully or the year after and this is a topic that we're really going to push and I just want to say that I in the VA we have people like Dr. Schwartz and Dr. Davies and others that are just they are committed to trying to solve this so the more information that gets out on this I think the more public interest that government reacts keeping the those here in the field that are in this and those are affected just keep pushing because eventually things will happen and I think the bottom line is that we care thank you. Well so it sounds like we have some news there so thank you for sharing that information with us and thank you to our panelists for being here today you know as I sit here and listen to this first of all I didn't ask half of my questions but this is sort of the life of the moderator but one of the things that sort of my take away from this is that the IOM for a decade has issued this call of action and we are at a point where we're either going to answer it or we're not and I think that what we've heard from Dr. Schwartz and what we've heard from Dr. Rome is that they would like to seize that moment so I know that people in this room including the journalists here will seek to ensure that we hold them accountable and ask the questions of where this is at so hopefully we will start to see the answers from those questions and that will inform the decision whichever way it goes and that we'll get evidence whichever way it goes but we have heard the personal stories in this room and what is a fact is that this is very personal to people and so in closing Terry Parris who is the community editor for ProPublica and I are going to be here after this forum and for those of you who want to share your stories we want to be here to record them and so we will be here for the next couple hours hearing your stories recording your stories and really encourage you to stay in touch with us you can get more information at propublica.org our stories are linked to from there as well as our survey of veterans and their family members so thank you for being here today thank you thank you