DOE Openness: Human Radiation Experiments: Roadmap to the Project Project Events |
Project Events
Stakeholders' Workshop
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COL. BAILEY: Colonel Bailey, here. I'd like to make a maintenance announcement. We've got to keep the noise down, ladies and gentlemen. I was a little bit lenient the first half of this session. It's absolutely essential, not only because of the acoustics but because we want to be fair to everybody. No need to scream. That's why we have the mikes. Let's keep the noise down. MR. EGILMAN: Are you looking at me? COL. BAILEY: No. I'm looking at all of you. That's for everybody. For now on, let's keep the noise down. MR. SELIGMAN: And just one other brief announcement. You know, I actually started my government career sharing an office with Dr. Egilman. MR. EGILMAN: And he lived through that. MR. SELIGMAN: And in fact, I learned a lot of what I know about how to function in the government at Dr. Egilman's feet. We've heard a lot of presentations this morning and views on concerns about the Committee recommendation. And what I'd like to try to do in this next hour is to spend about 10 to 15 minutes and allow the panelists to respond to other comments that the panelists made and then open it up to the floor, and encourage both the panelists and all of you in the audience to try to provide us, if you can, with any specific recommendations or guidance that could be used by the Interagency Working Group in providing a response to the Advisory Panel's report. So I think it was valuable to hear about the concerns and the weaknesses and the problems that people identified. I think what's important now is that people try to use their time in this next hour to focus on, again, specific issues, guidance or recommendations that you can make. So, why don't we start with the panel and David Egilman. MR. EGILMAN: So, you see, Dr. Seligman is a survivor, as well. I think he survived because he saw me do things. And every time I did something, he wrote it down and said, I'd better not do that. MR. SELIGMAN: That's not entirely true. MR. EGILMAN: And he took good notes. First, let me address the issue of dividing the pie. This is not a zero sum game. That's why I read that long poem. I wish you'd listen to the point of the poem. We all stand together or we all fall apart. We all hang together or we all hang. If the victims get something, it doesn't mean there's less for the workers. It means there's a political alliance amongst the workers and the civilians. And we can go together. Together, we have more clout. If you try to make the claim -- if you try to say, as you did here, that it's the workers against the victims, against somebody else, then you're right. We've lost already. Let's not ask for anything. Because divide and conquer works. It has worked so far. We must stand together. The pie gets bigger or our collective piece of the pie will get bigger. It's not a limited pie. When the government wants to spend money, $22 million, to study the problem, it comes flying out because there's no limit to how much money people will spend to cover the problem to get rid of the grief. Well, if part of getting rid of the grief is to actually do something good instead of this report, they'll find the money. The nuclear weapons production business has been a four trillion dollar business. We're talking about not even a drop in the ocean in terms of money. And in terms of politics, we must remember that we must work together. MR. SELIGMAN: Any other comments from the panelists? MR. FARBER: Yes. I've got one that I didn't have a chance to get to. Stuart Farber with the Radium Assessment Project. There's one point that I think is very key in the regard that I couldn't get into because of time limitations earlier but it gets to all of the issues we raise, and that's that the basic charge for the Advisory Committee from the President in his Executive Order that's part of your packet, if you go to page 2 at the very bottom, Item 3, it says, "If required to protect the health of individuals who were subjects of a human radiation experiment as defined earlier in the Order, the Advisory Committee may recommend to the Human Radiation Interagency Working Group that an agency notify particular subjects of an experiment or their descendants of any potential health risk or the need for medical follow-up." You'll notice very clearly it doesn't say that there has to be only notification or consideration of the health risks of cancer. That's a key point. It says health risks, health of individuals. As is key, and totally ignored in the report and the issue that I'm involved, and I'm going to speak only to my issue, the nasal radium irradiation issue, there is limited science on the issue. There is one study on the health effects of nasal radium irradiation on children as the practice was delivered in the U.S. The study was done at Johns Hopkins School of Public Health as a graduate study or Ph.D. thesis, and the initial reports presented on this study, it showed an 8.6-fold excess in the children followed, the 667 children, almost a 9-fold excess of thyrotoxicosis, or more commonly called Graves disorder, a benign, toxic goiter, which they hypothesized, the authors did, was do to pituitary irradiation because of the proximity of the pituitary gland to the site of the nasal radium applicator being placed. The pituitary would have gotten doses sufficient perhaps, although we can't be certain. But based on this study it was sufficient to cause a -- there was an observed health effect at a high relative risk with a probability of that occurring as a false positive of less than one in 1,000. The lead author said these results should be followed up. Now, they are highly significant, highly statistically significant, were their words. That was presented at a BRH-HHS-FDA conference on medical applications of radiation devices in 1979 and promptly buried. The results were never published. The only thing that was published about that study was neoplasms related to nasal radium irradiation, the subset of the data from that study. And that's all that the Advisory Committee looked at. Unfortunately, they've ignored what is probably the major risk to health. It's not malignant, but it's still a health risk. People with thyroid problems like Graves disorder, respond very well to notification and screenings. Take the case of Barbara Bush. She suffered, as she said in her autobiography, years of pre-clinical symptoms of Graves disorder, including depression, that she said was unrelenting at times. She talked about in her autobiography being suicidal at times, wanting to drive into a bridge abutment. Barbara Bush had access -- I'm not saying she had anything to do with nasal radium. She had Graves disorder, as did the President -- Bush, diagnosed finally in the late '80s. Barbara Bush had symptoms. They went undiagnosed, despite her access to the best medical care in the world. She didn't realize that she was at risk, like many of these nasal radium irradiated subjects. People are going to benefit from that notification. The Advisory Committee report fails totally to consider anything other than cancer, and therefore it's flawed. They haven't addressed their mission statement. MR. SELIGMAN: Yes. Go ahead. MR. SCHULTE: Thank you. MR. SELIGMAN: This is Paul, Paul Schulte. MR. SCHULTE: Paul Schulte, NIOSH. I just wanted to make one clarification. When I talk about the NIOSH experience, I talked about epidemiologic studies and the backlog of studies. I didn't talk about what we call participatory studies where we actually get people's informed consent to participate in a study. And our policy in that regard is that where we do have active participation either by giving a medical specimen, a questionnaire or allowing industrial hygiene samples to be taken, we do communicate the overall results of those studies to the participants in that. There is no HHS regulation to do that. The HHS regulations talk about when a person participates in a study, you give them their results. We take it a slight step further and give the overall results, mostly because we feel that occupational health occurs in such a contentious climate, labor-management type of climate, that it's always best that we provide the kind of information that we have. I would point out, though, that these are somewhat different kinds of studies because when a person signs an informed consent document, it's almost an implied contract and we have their names and the information can easily be given back to them. These are usually short-term cross-sectional types of studies, so it's something that's quite feasible and was another part of our notification approach that I hadn't talked about. MR. SELIGMAN: Yes. MR. EGILMAN: Let me follow-up on that. MR. SELIGMAN: fine. David Egilman. MR. EGILMAN: I just want to make the point that NIOSH -- if you actively participate in a study from NIOSH -- I want to make this point clear. You've given informed consent. You participate. They give you your individual results if they do monitoring of the air at the time. They tell you what your results are and they tell you what the overall results are. They do both. And they do both not just industry wide, but in the section I worked in where Paul was with me in health hazard evaluations. When we went and did a study, we told all the workers, got their individual results, if we had individual results. In this case, what the government has is individual exposures and they should give those results. They don't want to do it because it means people will actually find out they were exposed. MR. SEA: Yes. I just wanted to go back -- MR. SELIGMAN: Geoffrey Sea. MR. SEA: -- to the point that Richard Miller raised and Dr. Egilman, this question of dividing the pie. It's a real issue that we have to face. And we out in the hinterlands -- I don't mean just the survivors. I mean those of us who are out of the Beltway -- have a difficulty understanding this. And I think this misunderstanding is mutual that Richard Miller and Dr. O'Toole -- I'm a stakeholder now so I can call you Tara; right? Okay. We have friends in common so I feel like I know you anyway. And I know this is a concern of yours that both worker health and experiment victim health have been consigned to this kind of bureaucratic puddle and we're both in the same puddle. And there's only so much water in the puddle and it's kind of muddy water anyway. We're large pack animals and we're always trying to wallow in this one little muddy puddle. I'm pressing that metaphor a little too much, but the hippo is the nuclear weapons defense systems program, the four trillion part of the budget. And I think that we, you know, all of us are dis-empowered in a certain extent so we all get caught in this game of competing for the same money. And we think we've got to -- it would get reduced to the point where we think we'd have to -- you know, like lifeboat mentality. We've got to do triage on the programs we care about and the things that are of concern to us. And I think we need to take this issue to a higher level. And that's why we raised -- one of the reasons why we raise the issue of international law. Because we believe that that can raise this issue politically and through the media and in the public mind and get it to a level where there's some realization that, look, this country has spent four trillion dollars developing these nuclear weapons which have created tremendous problems in terms of public health and environmental health. And that it is not an option. It is not a -- you know, this is not a question to be decided by mid level bureaucrats or even high level bureaucrats whether we spend the money on this or that. There are requirements of international law. Now, let me say, again, I don't deign to give the President advice, although I am available as a consultant if you should choose to hire me. But it seems to me that President Clinton and his administrative have been profoundly uncreative on this question. And they've been profoundly uncreative because, first of all, the President has had the opportunity to say to the world not only that we want a comprehensive nuclear test ban but that these weapons have caused this massive problem and that we are going to lead the rest of the world, which we now have the opportunity to do, in total nuclear disarmament and divert some of those funds, a major portion. I think just one trillion would suit most of us just fine. Divert a major portion of those funds towards remediating the problems caused by these weapons in the past. And if he did that, it would be to his great political advantage and you would solve this problem that we all face of having to compete for a very small piece of a very small pie. And why President Clinton has not done that, we cannot fathom. And that's why we're in the position of having to say, you know, if you don't see what's in your own political self-interest, we're going to have to take you before the World Court and try you and your underlings, and that includes you, Tara, as friendly as we may be, for committing crimes against humanity because you have obligations to do this. It's not just -- you know, it's in your interest to do it. It's in the President's interest to do it. Why don't you do it? MR. SELIGMAN: Any other comments from the panelists? DR. GALSON: Yes. MR. SELIGMAN: Steve. DR. GALSON: I want to inject a little reality here and I see Tara scribbling so I don't want to take up all the points, but I want to first of all emphasize that medical follow-up of this huge group of subjects, logistically, regardless of whether we agree or disagree with what the Advisory Committee report says, would be anywhere ranging from difficult to impossible. The first issue is that records simply don't exist for most of the experiments that would allow us to go back and, one, find the people; and two, tell them what they were exposed to with any level of certainty. The second issue which we'll obviously talk about more is the cost. I think the other leaders of the public health agencies who are in the room here will agree that the political reality is such that in our current climate there is a pie and there is no new money coming into the federal bureaucracy. If we spend a lot of money on this, it is going to come out of critical public health activities that are taking place in our agencies now. Now, I'm not putting a value judgment on that. I'm just saying that's my -- and I think others here -- assessment of what the reality is, looking at Congress and looking at -- regardless of who's elected President. The last point on that is that the benefit question is very complicated. When I was speaking before, I was not talking about psychological harm to notifying people. What I was talking about was the medical risk of doing biopsies, the medical risk of doing radio-diagnostic techniques has to be balanced by potential benefits in any medical follow-up program. And I'm only saying that that equation has to be calculated and in many cases it doesn't come out in favor of doing follow-up. The second major point, quickly, is that I think there's some misconceptions here about what the government is doing with respect to the nasopharyngeal radiation, and I wanted either right now or during the audience period to have Dr. Mather or Dr. Henry Falk or both give a real quick update on what the government is doing about nasopharyngeal radiation subjects because there's a lot going on. It's not -- and I don't think most of you would construe as a coverup if you heard what the government was planning, so either now or -- MR. SELIGMAN: I'm going -- sorry. I'd like to move the discussion to the floor. There'll be an opportunity for panelists to also participate in the discussion of the floor. But I'd like to start it by introducing Mr. Harold Bibeau who's from the Oregon Prison Experiment Victims Group to start off the discussion and then we'll move to others on the floor. Just basically, raise your hand. I'll note who you are and we'll walk around. Harold's got the list and he'll walk the discussion. Very good. MS. CAMPOS-INFANTINO: And people need to speak right into the mike and you can stay where you are. That might be the easiest thing to do. We'll move the mike toward you. Just speak directly into the mike. Identify yourself by name and organization. And Mr. Bibeau, we do have until 12:00 when lunch starts. MR. BIBEAU: Okay. Hi. I'm Harold Bibeau and I was one of the participants in the Oregon prison experiments. It's a unique experiment in only one way. It's the only experiment that I've found notice for that the Department of Energy has already called for medical follow-up for the people that were involved in it. But that was done a long time ago. When they first decided to conduct that experiment, Dr. Charles Eddington from the DBM on the very day that he approved the experiments, he said I'm for support at the required level as long as we're not liable. Then in a second statement, he said, I wonder about the possible carcinogenic effects of such treatments. I thought it was kind of unusual that a doctor would go ahead and approve an experiment that he really wasn't sure of. And then beginning in 1970 there's a six-year paper record where doctors from the Department of Biology and Medicine first started looking into the possibility of providing some kind of medical follow-up program for this. They even threatened the doctor who was doing the experiments that if he didn't come up with a viable protocol to set up the medical follow-ups that they'd reduce his funding. And the next year when he came up for funding, it's interesting that they reduced his monies by 30 percent. I just can't imagine that being a mere coincidence. The medical follow-ups were eliminated at the time that the United States Attorney for Portland, Oregon requested that the ERDA cancel any follow-up programs. And it's always amazed me why a doctor who's taken a Hippocratic oath would let a lawyer tell him, I don't care what you say. You're not going to do it. We do have some people that would like to address the panel here. I'm going to call on Jackie Kittrell, first. MS. KITTRELL: Well my comment follows right on Harold's. Oh, I'm sorry. My name is Jackie Kittrell. I'm the General Counsel for the American Environmental Health Studies in Knoxville, Tennessee, which is in the immediate neighborhood of Oak Ridge. I practice public interest law. And my comment follows right on Harold's, which is I would plead with the Interagency Working Group to write into their report that they are not going to allow doctors to practice law without a license or lawyers to practice medicine without a license. I think that's what's been going on for 50 years in the earliest documents that we've seen. It's been doctors speaking like lawyers and talking about wanting to look for the harm but not wanting to make it public because they're afraid of liability. And it's been lawyers for the government talking like doctors saying, well, I understand that there is going to be a problem here. Let's keep it secret. And I would just absolutely plead with you to write in a specific statement saying that that will not happen any longer. The issue of whether there is harm or not needs to be investigated objectively regardless of what they think the answer will be and that has never happened before. MR. BIBEAU: Timothy Benally. MR. BENALLY: I'm Timothy Benally. I'm the Director of the Navajo Uranium Workers Program an in Shiprock, New Mexico. We cover Arizona, New Mexico, Utah, part of the Uranium Workers. My question is -- I'm going to direct it to Paul Schulte. And this is in regards to the study that was done between 1950 and 1980 on uranium miners. I guess it was done under implied consent because I was one of the subjects that was studied. The first time it was done under -- I think under Grand Junction people and then later on, it was done by the U.S. Public Health Service. And I did not realize what was going on all these years until I inquired with the NIOSH office and they had all the records and a lot of little explanation on their part how they perceived the miners to be studied. MR. SCHULTE: Should I answer that now? Paul Schulte, NIOSH. Mr. Benally, I'm not sure which study you're referring to. If it's the study that we just completed of the -- mortality study of the uranium miners. NIOSH is mandated by law to study workers and one of the ways that we do that is to get the records of people and follow them. And we do that without actually going to them and getting their permission. The permission has been essentially given to us by Congress as part of the process of watching out for the health of workers. And so that's the kind of study we did of the Navajo and white uranium miners. And recently we went with Mr. Benally to Shiprock and other areas and informed people of the results of the most recent mortality study that we did. So the way we did it was we had access to the information as a government agency and I'm not sure what you meant beyond that. MR. BENALLY: In between the time when I first went in for examination and up to the time that I talked to you on the phone and then you came out, you and Mr. Roe -- MR. SCHULTE: Roscoe. MR. BENALLY: -- Roscoe. In between that time I was never consulted or told about how the study was going and there was no communication between me and NIOSH. MR. SCHULTE: Right. And I can only say that there's a whole history that goes back in studying uranium miners. Many of the interactions between the miners and the government are not the kind that I would necessarily hold up as exemplary. But when we did develop a procedure to inform people of the results of studies, then we did it and we tried to redress that. MR. BIBEAU: All right. The next person is Ron Hamm. |