Kansas Commission on Veterans Affairs

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

June 20, 2001

Minutes

 

The fifteenth meeting of the Kansas Persian Gulf War Veterans Health Initiative Advisory Board was held on the 20^th of June, 2001, at 1:00 p.m., in the State Capitol building, Room 423-South.  The following were present: 

 

Advisory Board

Jim Bunker, DAV Representative, Chair

Senator Larry Salmans

Representative Dan Thimesch

Deb Rose, American Legion Representative

Dr. John Neuberger

Dr. Fred Oehme

 

Kansas Commission on Veterans Affairs (KCVA)

Tonya Ricklefs

Dr. Lea Steele

 

Guests

Joe de la Torre, Governor’s Office

 

 

 

The meeting was called to order at 1:02 p.m. by Jim Bunker, Chairman of the Advisory Board.  The meeting began with the Pledge of Allegiance.

 

Nomination of the position of Secretary

Jim Bunker moved that the board should appoint Deb Rose to the position of secretary.  The board approved the motion unanimously.

 

Approval of the minutes of  December 20, 2000 and April 24, 2001 meetings.

Dr. Oehme moved to approve the minutes of December 20, 2000, Dan Thimesch seconded the motion.  The minutes were approved by the board unanimously.

Dr. Oehme moved to approved the minutes of the April 24, 2001 meeting, Deb Rose seconded the motion.  The minutes were approved by the board unanimously.

 

Update on program activities

Dr. Steele briefed the board on the results of the public information meetings that were held across the state of Kansas during the month of May.  The results included the total attendance of all eleven meetings (307), how many Gulf War Veteran newsletters were delivered (6,040), and how many phone calls have come into the program since the information has been sent out (72).  Dr. Steele also summarized the information that veterans provided to the program by way of information sheets that they could voluntarily fill out.   The surprise information was that about 60% veterans who filled out these sheets reported having a positive experience with the VA health care system.  Also, the information sheets helped determine that the sickest of the Gulf War veterans in the state were the usually the ones showing up to attend the information meetings.  The board discussed different aspects of the information that was gathered at these meetings and on the information papers.

Dr. Steele also informed the board that she has been invited to give an informational presentation to VA health care providers in Topeka and Wichita and to VA employees at the Regional office.  Also, Dr. Steele has submitted a second scientific article to the American Journal of Epidemiology that will be published in the coming months.

   Copies of the overhead transparencies used in Dr. Steele’s report are included with these minutes. 

 

Current research project: “Autonomic Dysfunction in Gulf War Veterans”

Dr. Steele updated the advisory board on the progress of the current research study that the project is currently working on.  The first part of the study’s data collection is complete, and now the second part of the study’s data collection should start in July.

 

 

Update on national Gulf War veterans’ issues

The advisory board was given a copy of an April GAO report that cites the Kansas Gulf War Veteran Survey.  This is the first time in a government report that the number of 25% has been used to describe the number of Gulf War veterans experiencing symptoms. 

Both Dr. Steele and Jim Bunker advised the other board members about current Federal Legislation (HR 612 and S 409) and what is happening with these Resolutions now.  No Kansas Senators have signed on to the Senate bill right now. After different discussions that board members have had with the offices of the state senators it seems that they hesitate to support this bill because of the fiscal note that is attached to it.  All Representatives are currently signed on to the House Resolution except Representative Moran.  Mr. Bunker reported that Jerry Moran’s office believes that they have not heard from enough Gulf War veterans about this issue to be very concerned about this resolution.

Finally, Dr. Steele informed the board that the Department of Defenses Anthrax program has been cut back further because of the inability of the makers of the vaccine (Bioport) to achieve FDA approval.

 

Future direction of the Kansas Gulf War veterans’ program and Advisory Board

Jim Bunker asked the board members if they had comments to make about the future mission of the program and the Advisory Board.   All board members deferred their comments until the Chair of the board expressed what his ideas for the future were.

Chairman Bunker expressed his desire to see the program continue with the focus of  research.  In his opinion, this research should focus on answering the question of “why some Gulf War veterans are reporting feeling better”.   He has contacted Senator Kay Baily Hutchinson’s office to see how she managed to get money into Texas to do research into Gulf War Illness.   He would like to see Tiehart do the same thing for our program.  Currently Hutchinson’s office staff is trying to find the part of the appropriations bill that allowed research money to go to Texas.  Chairman Bunker feels that the Kansas Gulf War veteran program has laid a good foundation to continue research and has a good opportunity to help Gulf War veterans with their symptoms.

Dan Thimesch supported Mr. Bunkers idea of continuing the research portion of the program.  But, Representative Thimesch also believes that the board needs to petition the Kansas Commission on Veterans Affairs to try to establish a FTE (Full-Time Employee) position within the agency to look for funding (grants, DOD money, VA money, etc.) for the continuation of this program.  This FTE would also perform other duties directly related to the Gulf War veterans program.  Representative Thimesch feels like implementing this FTE position would fulfill one of the requirements of the Kansas Statute that established the Kansas Gulf War veterans program.

Dr. Steele pointed out that to have a full-time person trying to find funding for the program would be hard to achieve because of two reasons:   1.) The advisory board still hasn’t quite defined what direction they would specifically like to take the program, and 2.) that most funding for Gulf War veteran programs come from research money and you need a scientist that knows how to design a study to ask for specific research dollars.

Representative Thimesch also pointed out that one other intent of the Kansas Statute is to have public service announcements about the Kansas Gulf War veterans study played four times a year.  He feels that this part of the legislation has not been done, and needs a person to make sure that these are done in the future of the program. 

Dr. Steele did explain to Representative Thimesch that the program did get coverage in the media at every town that held a public information meeting in and that the program received excellent coverage during the announcement of the Kansas Gulf War veteran study results.  She believed this coverage to be better than what the program would get with public service announcements.

Representative Thimesch summarized his statements by stating he feels that not all of the goals of the Kansas Statute have been met.  These unmet goals lay the foundation of future directions to take the program.  And, by establishing the FTE position within the agency,  you allow for the Gulf War veteran program to meet the changing needs of veterans in the future.

Larry Salmans wanted to respond to some of the ideas for the future of the program before he had to leave, he asked for a couple minutes to speak.

Senator Salmans wanted to express to the other board members the difficulty of trying to establish a FTE position within the KCVA.  He knows that the KCVA tried to ask for another FTE during this last budget session and was turned down.  So, he feels the chances for this program to get a FTE approved is small.  Also, he feels that any money for the program will come from research dollars.  Any person seeking for funding to continue this program should be able to get research money and that research money may be better suited at the Kansas Department of Health and Environment.

Chairman Bunker noted Senator Salmans concerns about establishing a FTE position, but he thought that maybe a full-time person could be established in the KCVA to look for money to set up programs for veterans in general.  A good example of these types of programs are homeless programs for veterans. Chairman Bunker believed that money from the VA is available to set up programs like this.  Senator Salmans concluded with saying he did believe that money for programs for veterans  would not be a bad thing to try to get, but that he did not believe we needed to ask for money to just distribute information.  He believes that the information has already gotten “out there”, at least where Gulf War veterans are concerned.  Senator Salmans believes it is now the Kansas Commission on Veterans Affairs to decide what to do with the information that this program has given them about Gulf War veterans.

Dr. Steele backed up the idea that Senator Salmans had about trying to take the part of the program that focuses on research to another location.  She believes that a place like KDHE,(not necessarily KDHE specifically), but some place that is set up to handle research would be a better location for the research of the Gulf War veterans to be handled.  Dr. Steele believes that the KCVA is not set up to do any future research.

 

At 2:07 Senator Salmans had to excuse himself from the rest of the meeting.

 

Dr. Oehme asked if Dr. Steele and the board could review the missions of the program as established in the Kansas Statue.    Dr. Steele reviewed ten missions outlined in the Statute and she felt that all the missions had been met except the state birth defect list, which was not possible to do in cooperation with KDHE.  The state list of birth defects is not a comprehensive  enough list to be helpful for the mission of the Gulf War veteran project.  Also, she did acknowledge that we had not done the Public Service announcements, but had gotten good media coverage three times in the last year as a result of the Kansas Gulf War veteran study.  Dr. Oehme expressed to the board that he also felt like the mission of the Kansas Statute had been achieved.

 

Chairman Bunker and Dr. Oehme discussed the possibility of sending out Request for Proposals (RFP’s)  to different research facilities to see if anyone would be interested in conducting research with the goal of finding out what treatments are working for some Gulf War veteran’s symptoms.  They both agreed that an ideal situation would be to get the money through the way the current legislation is set up (through KCVA) and then sending out the money to any interested research parties.  After the program has found an appropriate place to conduct research, then the program can seek funding to conduct the research.

 

At 2:25 Mr. Jim Bunker called asked for a short recess for 10 minutes.

 

Following the break, Chairman Bunker and Dr. Oehme discussed focusing the programs future research on asking the Gulf War veterans that were in the original survey how they are feeling now and gathering information about they are feeling now and if there is any improvement, what did they do?  Dr. Steele informed the board that a longitudinal study of the veterans in the 1998 survey was very possible.   Dr. Oehme thought that building on the results of the first study might assist the program in gaining the funds to do the continued research.  Both Chairman Bunker and Ms. Rose thought the follow-up study of the veterans would be a good idea.  The questions that the board would like to see answered would be if veterans are getting better and what they have been doing in terms of treatment. 

 Dr. Neuberger also introduced the idea of finding out different meteorological data about that time period and where different exposures to different substances could have occurred.  Both of these ideas help give the board future ideas on where to take the program’s future research. 

Dr. Neuberger asked Dr. Steele what exposure information that there was in terms Department of Defense research.  Dr. Steele informed the board that the only real information that has been gathered has been from Khamasiyah research. (The demolition of a storage bunker that released chemical weapons in the air).  The Department of Defense has yet to really define what has been in the air during the time of the Gulf War.  Dr. Neuberger wondered if the exposure research would give the board another direction to go in if they wanted to.  Dr. Steele and Ms. Ricklefs informed the board that this research may be difficult because while you could get meteorological information from the time period, the Department of Defense does not know exactly what was in the air at the time and what they do acknowledge being in the air during the Gulf War has not been deemed harmful by the Department of Defense. Dr. Oehme suggested that the board follow the original idea of researching not what caused the problem, but what is working for veterans.  Dr. Oehme thought even the information about what hasn’t worked for some veterans would be helpful. 

Chairman Bunker suggested that a sub-committee of the board draft a proposal for the project to undertake the research of what veterans are doing to get better.  Chairman Bunker also recommended that the sub-committee formed by the board find an organization interested in performing the research, writing a proposal to receive research funding, and to design the research study.   Dr. Neuberger agreed to chair the sub-committee with input from Dr. Oehme.  Dr. Steele pointed out that the board as a whole needs to agree that the mission of the program is to continue with research.  The board ,at this point, has not established a clear direction that they want to go in if they want to continue in research they need to define a mission for the program.  Dr. Steele recommended that the board attempt to get the Kansas Commission on Veterans Affairs on board and aware of the direction that the Advisory Board is thinking about going.  Representative Thimesch also felt like the Commission needs to be made aware that because the work of the program needs to be continued they should ask to establish a FTE (full-time position) within the organization of the KCVA.  Dr. Oehme pointed out that while a FTE is an option to keep someone within the organization of the KCVA, it will not be able to take effect in time to keep Dr. Steele’s FTE position funded after the current research dollars run out.    The board thought that this is where seeking research funding will help out with funding.

At this time, Chairman Bunker asked the board to state what decisions have been made at this meeting so they can make some formal motions.  Dr. Neuberger made a motion that Mr. Bunker draft a letter to the KCVA to inform them that the advisory board would 1.)like the program to pursue research and 2.) follow-up on the health of Gulf War veterans in the programs 1998 study.  Ms. Rose seconded that motion and it passed unanimously.    

Representative Thimesch made a motion that the Chairman of the board also approach the KCVA about establishing a FTE within the program.   Ms. Rose seconded the motion and the motion passed unanimously.   Mr. Bunker did ask the board to review a draft of a letter that he will send to the KCVA.  The board agreed to review Mr. Bunkers draft.