Kansas Commission on Veterans Affairs

 Meeting of Kansas Persian Gulf War Veterans Health Initiative Advisory Board Meeting

Minutes

 

            The Kansas Persian Gulf War Veterans Health Initiative Advisory Board meeting was held on the 20^th day of December, 2000 at 1:30pm at the State Capital, Room 522-South. The following people were present: 

 

Advisory Board Members Present

Senator Larry Salmans

Major Sharon Raby

Representative Dan Thimesch

Dr. Fred Oehme (phone)

 

KCVA Staff

Stoney Wages

Dr. Lea Steele

Tonya Rickefs

Randy Scott

 

Guests

Debbie Rose, KSNA

Dr. Irv Coehn

Representative Judy Morrison

Chuck Bredahl, Adjutant General’s Dept.

Dr. Charles Hinshaw

Valerie Gary (??), Program Coordinator Kansas National Guard

 

 

The meeting was called to order at 1:45pm by Senator Salmans, chairman of the Advisory Board.

Senator Salmans asked the audience to introduce themselves to the board and staff.

 

Minutes of the September 19, 2000 Meeting

Senator Salmans suggested that without a quorum present that we could take a look over the minutes, but could not take any action on them.

 

Update on Program Activities

Dr. Steele showed the board the media coverage on the local stations as a result of the press conference that was held on November 15, 2000.  The press conference was the first step in informing Kansas area veterans of the results from the projects study.  She also provided the board with copies of the national press coverage.  She also briefed the board that the article has been provided to key officials in the federal government and activities in the Gulf War issue.

 

 

 

Autonomic Dysfuction in Gulf War Veterans

Dr. Steele also once again briefed the board on what is happening in the current study that the project is doing.  The data collection has finished on the first part of the study, and judging by the veterans that the project spoke to, veterans were very enthusiastic about what the project was doing.  Now, the data collection for the next part of the study will begin early in 2001.   Dr. Steele explained that this data collection will take place in Topeka, Junction City, and Kansas City.  It will look at the differences in neurologic functioning between veterans who have/don’t have Gulf War Illness: physiologic testing.

Representative Dan Thimesch did rase the issue that the funding for this cooperative project with Midwest Research Institute, the University of Nebraska, and the Kansas Persian Gulf War Health Initiative is all funded by the Department of Defense.  Representative Thimesch wanted to know if the project had made sure that it had freedom to do what we needed to do with the results.  Basically, Rep Thimesch wanted to make sure there were no “strings” attached to the federal government and that the results of the study, no matter what those were, would be able to be seen by the public.  Dr. Steele reassured Rep Thimesch that when contracts were signed by everyone there was no “strings” that would prevent the information from being released.

 

Presentations at Scientific Meetings

In January, there are two scientific meetings being held that Dr. Steele will be presenting the projects results at meetings in Washington DC, and in Seattle.  These are important meetings in the community of Gulf War research and gives the project an excellent opportunity to inform federal researchers what results our Kansas study has found.

 

Plans for Veteran Outreach

Dr. Steele showed the board a sample of the newsletter that the Kansas Persian Gulf War Health Initiative is going to be sent out to the veterans in the project database.  She informed the board that the mailing should go out in January and Dr. Steele encouraged the board to contact us with any feedback that they could provide about the style or content of the newsletter.

Then, beginning in February, the project will begin the informational meetings across the state.  Dr. Steele confirmed that the project will be scheduling meetings in Kansas City, Wichita, Topeka, and Junction City.  But, she encouraged the board to provide feedback of any other locations that the board could think of adding to the list. Dr. Steele felt the Colby/Goodland area was a good location to keep in mind.  The 170^th maintenance unit came out of this area and would be a good group to try to inform.

The forum for the meeting should be the sharing of information.  The project would love to be able to gather information from the veterans, but the concern is that the entire meeting would become a venture for complaints.  Unfortunately, our project cannot answer complaints about the VA and its treatment of Gulf War Veterans.  Dr. Steele asked for suggestions from the board on how we can manage to get the information from veterans about what they are going through, without losing the focus of the meeting.

Another idea that Dr. Steele presented is that KCVA has a service worker present at the meeting so veterans can meet with them that evening if they have questions or concerns.  Finally, Dr. Steele provided the board information on what the main issues that should be discussed at the town hall meetings should be.  One issue that is a concern is whether our project should encourage active duty people to get on the DOD’s CCEP.  Some active duty veterans have indicated that it works against them while they are still working within the military.

National Gulf War Veterans Health Issues

Dr. Steele briefed the board on national issues relevant to Gulf War Veterans.  One of the issues is a national effort by the “10^th Anniversary Committee” to have a national candle vigil held at each statehouse across the United States.  Tonya Ricklefs finished explaining the issues surrounding the vigil such as who is involved and why it is being held.  The vigil will take place nationally on February 28, 2001 and currently, Kansas does not have a group organizing a local vigil.  Dr. Steele and Tonya asked the board if they thought the organizing of this vigil would be something that an individual board member (or members) would like to undertake.  Rep Thimesch asked if the staff had recommendations on who we would like to see undertake this.  Dr. Steele recommended that a veterans group in the state could find someone to undertake.  Major Raby said she would contact people with the legion and have Chuck Younger get back to us.  It was also suggested by Rep Thimesch that the staff contact Jim Bunker and Jeff Lawson so the DAV and the VFW would have opportunities to volunteer to put this together.  Tonya told the board that once someone decided to take this on, she could provide them the organizational information they needed. One major undertaking of this project is spreading the word to veterans across the state about the candlelight vigil.  The staff informed the board that this undertaking would be accomplished very easily by putting the information about the vigil in the projects newsletter going out in January.

 

Questions from the audience

At this point, Senator Salmans opened up the meeting for questions from the audience.  Dr. Charles Hinshaw asked a variety of questions about the specific testing being done and why it the “Autonomic Dysfunction of Gulf War Veterans” study is headed in this direction.

Representative Judy Morrison asked if Dr. Steele had ever been in contact with Dr. Garth Nicholson because he has major research going on with Gulf War Veterans.  Dr. Steele confirmed that she has spoken to him.  Rep Morrison and Dr. Steele had a small discussion about the research that Dr. Nicholson has been conducting and how hopeful it may be for Gulf War Veterans.  Rep Morrsion also asked if it is true that the French troops do not have any illness, Dr. Steele confirmed that this is known to be true, but currently the French government has come out and said that they have a small percentage of solders that are ill, but they are the ones that were attached to American troops.  Discussion continued between Representative Morrison, Dr.Steele and Dr. Hinshaw about the nature of how the veterans developed Gulf War illness.  Senator Salmans encouraged the audience to talk to Dr. Steele after the meeting and ask more questions, this way the board could continue with their business of the day.

 

Future direction of the Gulf War Program

Senator Salmans informed the board that he still is not sure whether he will be returning to the board yet.  In a discussion with the President-Elect of the Senate, Senator Salmans said that both the President-Elect of the Senate, himself, and Senator Morris would be discussing his appointment to the board.  There may be another Senator that has expressed an interest in being on this board.  They will also discuss whether there is a future to this board at all.  Senator Salmans said that the President-Elect of the Senate was asking Senator Salmans for specific reasons to allow the program to continue.  The board needs to establish specific reasons to exist and why the board would continue to meet.  Without these specific goals being met, the Legislature is considering looking into sunseting the entire project as a whole.      

 

Dr. Oehme spoke up at this point and indicated he felt that this project had been charged with finding out whether there was a problem with Gulf War Veterans in the state of Kansas. He feels that Dr. Steele established there is a problem in Kansas and now the legislature should be responsible and say, “What do we do about this?”  Dr. Oehme felt that this board could be invaluable to the legislature in advising the state on how to undertake tackling this illness.

Senator Salmans said if we do this, then we need to sit down and establish goals about how this board will go about doing this.  Once these goals are established, then Senator Salmans can take these to the President of the Senate in January and the President can make decision then based on those goals.

Representative Thimesch discussed the language of the bill and what direction that the board can take based on this language.  He felt the birth defects registry could easily still be tackled, also that more grant-writing can be done to continue to help fund this project.  He also hopes that the project could try to have some influence in the design of Kansas birth certificates based on information about children of Gulf War Veterans.   Dr. Steele has answered the question of if there is a problem, but Representative Thimesch feels the public service information part of the board business has fallen short of the goal.  He would like to see more of that undertaken in the future by the board.

Representative Thimesch has also contacted Wichita State University about having someone at the Center for Economic Development and Business Research Department undertake a fiscal impact study of Gulf War Illness in the state of Kansas.  Dr. Steele did indicate that the fiscal impact to the state is minimal based on the information gathered during the first study.  Representative Thimesch felt the fiscal impact study that may be done at Wichita State may be more involved and will show an impact to the individual veterans and to the state.  His major concern is the impact that their health care costs are having on the veterans income and on their insurance carriers if the carriers to take on the cost of the veterans care.  Representative Thimesch hopes that a fiscal impact study could result in prompting the federal government to allocate money to cover these expenses for Gulf War Veterans.

Representative Thimesch feels that all of the goals that the project could accomplish in the future completely substantiates the need for this board to continue.

Dr. Oehme suggested that one direction this board and project could move in the future is contacting the veterans directly about what they see as the major concerns and priorities in their lives as a result of their health care issues.  One suggestion from Dr. Steele and confirmed by Major Raby is that the project gather this information at the town hall meetings coming up.  Dr. Oehme thought that the project could start sending out periodic bulletins updating information for Kansas Veterans and also asking them for information that they could share with the project.

 

At this time, Senator Salmans suggested that the board could also define what relationship they see having with KCVA and if it is possible to move this project in a different direction than research and sent the project and the board over to KDHE.  Should the Kansas Persian Gulf War Health Initiative be split into two separate functions, one being public relations and one being research is also a question Senator Salmans is wanting the board to consider.  He feels that KDHE is a place designed to handle the outreach to the veterans in Kansas.

Representative Thimesch does agree that this project is changing what its mission may be, but he feels strongly that KDHE is not set up to handle this particular issue.  He feels like this is a veterans issue and needs to stay with KCVA and that this board should actually strengthen its relationship with that agency.

Senator Salmans really feels he is struggling with thinking of what the advisory board function is.  He would like the board to define what advisory means, if they only advise and no action necessarily is taken, or if they can tell an agency what to do and should the board expect it to be done.  Senator Salmans suggested the board schedule another meeting soon so the board can see what a town meeting will look like, possibly running an actual meeting and so the board can make suggestions.  The meeting was roughly scheduled for January 16^th.  There was no motion made on it.

Representative Thimesch wanted to know when the KCVA Commission met again because he thought that the board could attend that meeting and keep the commission informed of what the board is doing.  The next KCVA meeting is January 19^th, so the 16^th of January is a good time for the board to meet. 

Stoney Wages also suggested that he could get Dr. Steele on the agenda for the state wide VFW meeting in Great Bend on January 12 and 13^th.  This may give the project another opportunity to share its findings.  With that idea in mind, Major Raby shared that the Legion state meeting is on Feb 3 and 4^th.   While Gulf War Veterans may not be joining these organizations in large groups, this sharing of information at the meetings will hopefully trickle down the information into these groups across the state.

Senator Salmans asked the board if they had any more suggestions or ideas about the direction of the board, or any ideas about what they discussed on the agenda if the board members could please submit those to Tonya Ricklefs before the next meeting.

 

Resignations and appointments to  the board

Senator Salmans indicated that he has a resignation from the board that he has received but will take no action on it today because the board did not have a quorum.  Major Raby also announced that should would have to resign from the board by June 4, because she is being relocated to Texas.  She informed the board that the Legion will recommend a proper replacement for her when the time comes.  Also, Dr. Neuberger has been reappointed to the Advisory Board by the KCVA commission for another three year term.

 

Senator Salmans asked the audience to make comments now, or please forward comments or information to the staff of the Kansas Persian Gulf War Veterans Health Initiative.

Dr. Hinshaw commented to Senator Salmans that he hopes that Senator Salmans would precede with caution by separating the project from the KCVA.  He is concerned that by splitting the project, you may cause a problem with having good access to the Kansas veterans.

Major Raby agreed on the point that when you take a veterans issue out of an agency like KCVA and move it into another agency like KDHE, some veterans will be turned off by this.  Veterans have formed a trust with the KCVA that KDHE may have trouble replicating.  Veterans like talking to people who understand or share their issues.

Stoney Wages also commented that veterans around the state are comfortable with KCVA and he was concerned about how another agency would be able to establish a credible relationship with the veterans.  He understands some advantages KDHE has, but with veterans issues, there are ways of getting things done that the KCVA has the ability to do that other agencies don’t.

 

Presentations to the Kansas Legislature