Ranch hand advisory committee




НазваниеRanch hand advisory committee
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DR. GOUGH: We have to return to psych.

DR. HARRISON: We have to return to psych, but what I'm suggesting is, let's do the public comment, go to lunch, come back refreshed and have at it. Is that agreeable to everyone?

VOICE: So moved.

DR. HARRISON: So we've got Mr. Weidman, who is representing --

Mr. WEIDMAN: Vietnam Veterans of America.

DR. HARRISON: We've got Mr. Weidman, who is representing   

MR. WEIDMAN: Vietnam Veterans of America, sir.

DR. HARRISON: Vietnam Veterans of America. Thank you, sir. The floor is yours. We're running a little behind, but that's okay.

OPEN PUBLIC SESSION

MR. WEIDMAN: Thank you very much. I have that for the record, and I'll give one to the gentleman preparing a transcript, and any other drunk on the street who really wants one.

First, let me say that I want to thank each of the individual members of committee, some of you who have been on this committee for a long time, for your service and your yeo-person efforts, as it were.

I would be remiss if I didn't express some dissatisfaction, if you will, with the service given to this committee by FDA. We will be approaching the new Secretary of HHS, Tommy Thompson, asking that support for this committee be moved from FDA to someplace that's actually going to support the committee.

The reason you have me here today, as opposed to our first string, Dr. Linda Schwartz and George Claxton, is because we didn't get the notice except inadvertently on Friday, through a member of this committee. And neither did the other VSOs, veteran service organizations. This is a problem that has been recurrent, every time we've asked that it be fixed and thought that it was fixed, it wasn't fixed; the meeting a year ago in August, we found out about from General Accounting Office interviewers quite by happenstance. It's just a constant recurrent problem.

If you're going to have a public sunshine law meeting, then have a sunshine law meeting that is advertised in such a way that the people who really are the constituency which you are providing service to by all of your extraordinary efforts; not just by coming to these meetings but in between time, when I know all of you devote an enormous amount of time and energy and dedication to trying to make this the best possible study, and to provide the kind of input that excludes folks.

And therefore, a lot of your good work becomes suspect of the Advisory Committee simply because the sunshine steps to make sure that the meetings take place in the sunshine were not taken, and therefore your public, if you will, your constituency    which you really have two constituencies, one is the scientific community and you're upholding the integrity, from a scientific point of view; and the other is the men and women who were exposed to Agent Orange and other toxins in Vietnam. And obviously your third constituency is the public at large, to make sure that the overall needs are properly met.

So I would be remiss if I did not touch upon that, and I will apologize. I talked briefly to Dr. Schwartz this morning, who had been out of town, and she sent her warmest to you, Chairman Harrison, and to all of you good folks, and asked specifically that all the members of the committee keep a sharp eye on the broken down former Marine masquerading as Dr. Paul R. Camacho   

(Laughter)

   and make sure that he doesn't get into trouble over the next day and a half here, and that all of the folks from Yale, from University of Massachusetts and other academic institutions in New England would be grateful if you would try to keep Camacho from making too much of a scene.

The second thing is --

DR. STOTO: Before you get off that one, I don't know whether you were here for the discussion of the Minutes yesterday. I don't think you were. Because the committee felt very similarly about the level of support that's available from HHS in the preparation of the minutes. And we felt that there really needed to be a greater level of support so that better quality minutes were done, which is in everybody's best interest.

MR. WEIDMAN: Well, it's not only better quality minutes, it's making sure those minutes are publicized, if I may.

DR. STOTO: Sure.

MR. WEIDMAN: We had requested and got in zip form, which it turns out we didn't have the capability on our system to   

DR. STOTO: I just think it adds to the point that you made about need for better support.

MR. WEIDMAN: You folks have tried like the Dickens to do your job and not been supported, either with money to have enough meetings, right along; certainly not as many as members of this committee in the past would have wished; and secondly, the way in which the meetings are handled only give rise to suspicion where there doesn't necessarily need to be any, and calls your good efforts and your genuine service into not having the kind of salutary effect that the Congress envisioned when this advisory committee was indeed created to the Ranch Hand study.

And I think that that's unfortunate and I don't know the schedule of the meetings for the next year, or actually it will be another five years here, but for those meetings in Washington and making sure that the Secretary of Health and Human Services exhibits the kind of commitment to this committee that has been so sorely lacking in the past, we will do our best.

Governor Thompson has    is not a veteran, but has a tremendous track record to veterans in his service as Governor of Wisconsin. Wisconsin has far and away the best state services to veterans in the nation. That's because he's taken a personal interest in it, and has provided both resources and wholesale political assiduous support for enhanced services to veterans.

So we're quite confident that we'll be able to get in to see him, and that I think it's likely that he'll be able to respond or will respond, number one; and number two, we've already had discussions with folks on the Hill about re-enhancing the veterans function at HHS in general, and to Ranch Hands specifically.

So I just wanted to let you all know that so you didn't think that somehow that was a slap at any of you who serve on this committee, because it's not. It's, we're frustrated because we believe that the members of this committee who have donated their time have not been served well by the way in which HHS and FDA have served you, in terms of, you name it.

To have the meeting in Washington, D.C. but to have it here makes no sense if in fact you're really interested in having the public attend. It's hard to get to and it's difficult to get in the building if you're not on the list ahead of time. And I want to thank you, Ms. Jewell, for putting me on the list this morning. It was, instead of 25 minutes getting in the building, it was about 3 minutes getting in the building, so I'm grateful for that.

So it's not that people are ugly, it's just a question of organizational commitment to be able to showcase the extraordinary talent that is in this room in such a way that the veterans community has much more confidence in the overall study.

DR. HARRISON: Where should we have held the meeting?

MR. WEIDMAN: I would suggest someplace in town. And in the future, if it's moved from FDA and it's moved downtown, someplace like the Hubert Humphrey Building would be appropriate and you'd have a lot more participation from people in the peanut gallery, if you will, sitting in. You would also have reporters from Stars and Stripes and perhaps general press; but they're not going to come out to Rockville, bluntly, unless it's an earth-shattering announcement; and if there were, it wouldn't be released out here anyway. So it's just not going to happen.

So the only veterans publication that has covered this committee in the past has been VVA. The other veterans service organizations find out about this from us, when we inadvertently find out when the darned meetings are. So it just, it diminishes your extraordinary efforts as opposed to magnifying and showcasing your extraordinary efforts and the expertise that all of you have brought to the table to try and assist Joel to make this the best study possible.

I don't want to dwell too long on that, but I think you understand where we're coming from; and I want to just move on to another topic.

The second topic is, and this is    we had a commitment, we thought, and of course Dr. Michalek testified under oath that the rest of the databases, all of the databases would be available by the end of the year. That's not happened yet, as far as we know.

DR. MICHALEK: Everything's on the web site.

DR. HARRISON: Yes, we just didn't; we haven't told you yet, but   

MR. WEIDMAN: Well, once again, I talked to Linda this morning and she didn't know it.

DR. HARRISON: Let the record show that, as Chairman of the Advisory Committee, I didn't know that it was on the website either. But that was just a few weeks ago.

MR. WEIDMAN: One of the things I might suggest might be in order, Dr. Harrison, is a motion by the committee to make sure that some kind of press release and notification happens of Congressman Shay's office, of Lane Evans, of others    Senator Daschle, we certainly will give them an informal heads-up. But that's not the same as you folks taking steps as a committee to report to one of the constituencies you serve.

DR. STOTO: I saw a draft of the press release.

DR. MICHALEK: We wrote a press release and released it, the last dataset was put on the web page on the 29th of December; and on that day we sent a press release to Washington.

MR. WEIDMAN: To?

DR. MICHALEK: To TES GI, the public affairs office at the Surgeon General on Bolling Air Force Base.

MR. WEIDMAN: And they did what with it?

DR. MICHALEK: Well, they have their own process.

LTC BURNHAM: Coordinating it.

DR. MICHALEK: Coordinating it.

MR. WEIDMAN: So it's aging like fine cheese.

DR. MICHALEK: So it hasn't come out yet, in other words.

LTC BURNHAM: The last I heard, just before we left, was Donna finalized it and put it out.

Now again, we have no control over    we did a press release after the third --

DR. GRUBBS: About September.

LTC BURNHAM: After we released the first four; just to say we're on schedule, and absolutely no one, no news agency picked it up.

DR. HARRISON: You know, it seems to me it that there are two questions being asked here. But they're kind of related. Actually, one request that, or one suggestion that was made to the committee was that the committee request that several officers and several VA organizations again request that those organizations be notified well in advance of our meeting dates.

That doesn't seem to be a real arduous task; maybe there's    maybe there are administrative issues that have to deal with that. And it seems to me that some members of the committee have questioned the location of the meeting here at 5600 Fisher's Lane, Parklawn Building. And as I recall, we met once down at the Hubert Humphrey Building, and really had more attendance than   

MS. JEWELL: No, we didn't.

DR. HARRISON: Okay, maybe I'm mis-remembering. But at any rate, let me just --

MR. WEIDMAN: But if you do both, if you have it at the Hubert Humphrey Building and you give adequate warning ahead of time so that folks can get the word out and people can arrange their schedules, you will have people.

DR. HARRISON: Of course one of the things we can do is the committee    we're a bunch of scientists here, we can test this hypothesis. We can ask that this arrangement be made. If it's feasible to be made then it will, and then we'll see what the outcome is. According to Ron and Barbara, we've been down there once without attendance, but perhaps without adequate forewarning.

MS. JEWELL: We've also been in a hotel in D.C. If you remember.

DR. STOTO: I recall being in the peanut gallery at least once in the Humphrey Building.

DR. HARRISON: But my suggestion is, that that sounds like a reasonable suggestion. Does the committee feel the same way? Paul, you just spent a half hour trying to get into the building yourself.

MR. WEIDMAN: That's because he had a profile from the FBI at the front desk.

DR. CAMACHO: I thought the last time we met that they were    I thought the last time the committee met, in San Antonio, it was sort of understood that we were going to send notices to the VSOs.

DR. GOUGH: I drafted a letter for Bob.

MR. COENE: I don't know how much the Chairman wants to put on the record here, and also for Rick.

DR. HARRISON: I mean, if it's something that I didn't do, then let's go ahead and put it on the record.

MR. COENE: No, no, no. The fact, and in all due respect to the new Secretary, 18 months ago we recommended that this committee be elevated and put into the very office that you're talking about. The individual, who's not here today for reasons that we don't understand, but she    Col Caldwell is the new liaison, isn't here today. She's going to be here this afternoon. I pose maybe that some of this discussion be postponed, because she needs to hear this.

The fact of the matter is, she was notified. She was given the list of the organizations to contact. That didn't get done. It didn't get done last fall because the office was vacated, and the Office of the Secretary chose not to give it any priority. It is a problem that you, I guess, and I would have to recommend that you do have that audience with the new Secretary.

DR. STOTO: That's exactly the way to handle it.

MR. COENE: Because at this point in time, it hasn't changed and we    you know, we're frustrated ourselves.

DR. HARRISON: What you're saying is that your protocol requires that you forward this information to --

MS. JEWELL: Run it by them, and they do the VSOs, exactly.

DR. HARRISON: Okay. And you're saying that has been forwarded. You're assuring us that it's been forwarded and that it died in that office.

MR. COENE: And I'm concerned, Rick, that you're making this recommendation, and you, when you get all done, are going to have this    what happened with the Air Force's press release on the dataset. It gets up into that higher echelon down there, and their priorities and the things on their plate, it doesn't get done.

And you're right, we've pushed this wet noodle of support for the last ten years, and am fully aware of it. I hope that you're right, that you're right, that you're going to see some more support from the current administration in that office. But I know what's happened to that office, they've just shrunk it. There's no staff.

The fact that we had it in this building out here is so that Barbara and I and now Len had resources in the building. When we move down into a hotel or into HHS, the resources to support this, the simple things like xeroxing, are not available. So we made with the minimum resources, people resources, we stayed close to the physical resources that we knew and had at hand, and we balance that. That is the bottom line. And I wish you all luck in elevating this in the Secretary's office, because that's obviously what we've got.

I give you a history over the last ten years, two times, three times I had to defend the existence of the committee, to do away with the committee completely. And even the Secretary at one point had to override GSA, who ultimately compiles the total list of advisory committees.
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