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The unofficial site of the Kansas Persian Gulf War Veterans Health Initiative Advisory Board |
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Board Members
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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 19th day of September, 2000 at 2:00pm 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 Jeff Lawson Jim Bunker Dr. Neuberger (phone) Dr. Fred Oehme
KCVA Staff Stoney Wages Dr. Lea Steele Tonya Rickefs
Guests Debbie Rose, KSNA Sharon Pat, Asst. Director Dr. Sottie, KDHE Sharon Patemode, KDHE Francine Hines Dr. Irv Coehn Russell Haun
The meeting was called to order at 2:02pm by Senator Salmans, chairman of the Advisory Board.
Minutes of the March 29, 2000 Meeting Senator Salmans suggested that the board go ahead and take a look at the minutes, but the board would not take corrections or vote on the minutes until the end of the meeting.
Research Assistant for the Project Dr. Steele introduced Tonya Ricklefs to the advisory board as the new full-time research assistant for the Kansas Persian Gulf War Health Initiative Project.
Kansas Gulf War Veterans Health Initiative Study 1 and Study 2
Study 1
Dr. Steele briefed the board on the progress of the “Autonomic Dysfunction in Gulf War Veterans” study that has just started. The Kansas Persian Gulf War Health Initiative is coordinating the study that involves the Kansas Department of Health and Environment, Midwest Research Institute, and the University of Nebraska. The Kansas Department of Health and Environment has just begun the calling and interviewing of the Kansas City area veterans to recruit for the study. The response of the Kansas City area veterans that have been contacted about this study has been very positive. The Autonomic Dysfunction study is a one million dollar study, 200,000 dollars of which is being paid to the project for our service and participation in this study. Study 2 Data collection for study two should start in January or February of 2001.
Publication of Results of Kansas Gulf Veterans Health Study Dr. Steele informed the board that the Kansas Gulf Veterans Health Study paper has been accepted for publication in the American Journal of Epidemiology. Normally the waiting period for publication is at least nine months, but after some discussion between Dr. Steele and the publishers, the publication date has been moved to either November 15th or December 1st. When the paper is published, the Kansas Gulf War Veterans Health Initiative can do some publicity of the results. The timing of the publication will coordinate very well with the other research activities that the project is working on, and will also hopefully come after the election news is over.
Update on Project Activities Now that the paper has been published, the project can start doing outreach to the Kansas Veterans that should be informed of the study results. First, there will be a media release and announcement of study results to coincide with the publication of the paper. Next, the project will do a mass mailing to Kansas Gulf War veterans to inform them of the results of the study, how to access government programs and services, and to inform them of the statewide meetings that we will held across Kansas. Four cities have already been decided on for some of the state meetings; Kansas City, Wichita, Topeka, and Junction City. Hays and Colby have also been considered as possible meeting places. In January, Dr. Steele will be giving presentations about the Kansas Gulf Veterans Study paper at scientific conferences. Right now, there is two conferences scheduled, and these presentations will also help get the information out to the public and the scientific community.
Kansas Persian Gulf War Veterans Health Initiative Planning/Budget FY2001 (through June 2001): 80%-research contract 20%-state funds (from prior years) The 20% of state funds amount to about $28,000 of roll-over money from the state budget. This money will be used to facilitate the statewide information meetings. The 80% coming from the research contract funds all of the position of research assistant held by Tonya Ricklefs, a large percentage of Dr. Steele’s position is funded by this money, and funds everything involving the research project.
FY 2002 (July 2001-June2002): 100% research contract Currently all of FY 2002 is currently funded by the research project.
FY 2003 (July 2002-March 2003): 100% research contract
Dr. Steele advised the board that with both of these fiscal years being funded by research money only, it limits what the project currently has money to do. Right now, we are only being funded to do services related to the research project, there is no funding for advisory board meetings, service work, etc. Representative Dan Thimesch raised the concern that the way that the statues creating the Kansas Gulf War Veterans Health Initiative project are written, the project cannot accept funding directed to specific services. The funding that is accepted by the project needs to be allowed to be used in any way that the project would like to. Senator Salmans and Dr. Steele both noted that they did not recall this part of the statute, but did say that it is something that could be looked into. Dr. Steele also noted though that the funds to facilitate the research studies are contracted only for services involving the research studies, so the project, by law, cannot spend the money on any other services. Senator Salmans noted that the contact money we received is similar to when University of Kansas is contracted to perform a specific service. The state does receive money often ear-marked for a specific service and it is considered “off budget”. Dr. Steele also noted that right now, we have not found any money that would help a state agency run a program like this, currently the money for a project like this is research money.
Update on National Gulf War Veterans’ Health Issues Dr. Steele reviewed the Institute of Medicine report on Gulf War Exposures. This first report covers DU, Sarin, PB, Vaccines. Currently the Institute of Medicine report has found that after reviewing the scientific literature on Gulf War Exposures, that the information is inconclusive. Dr. Steele also reviewed that Dr. Haley’s group has found more neurologic abnormalities in Gulf War veterans. The VA is also going to study ALS (Lou Gehrig’s disease) in Gulf War veterans. Some preliminary studies have shown an increase of ALS in Gulf War veterans. Both Dr. Haley’s studies and this VA will be interesting because they show the trend to start looking that the problems that Gulf War veterans are suffering from may be neurological. The last news item is that during the summer of 2000, the Department of Defense has scaled back the Anthrax vaccine. Debbie Rose from KSNA, who is in the audience also noted that you have to be going to southwest Asia for more than 30 days to receive the vaccine. Right now, the Anthrax vaccination program is in limbo indefinitely while the makers of the vaccine (Bioport) try to pass FDA inspection.
Future Direction of the Kansas Gulf War Veterans’ Project Dr. Steele reviewed the tasks that the Kansas Gulf War Veterans Health Initiative was assigned to complete based on what was written in the statutes that established this program. These have been broken down into eleven different task. Currently, the large majority of these tasks have been completed, are ongoing, or will be completed by the summer of 2001. One of the tasks that the project was assigned was to Request KDHE inform families of children with birth defects of Gulf War veterans’ survey. Dr. Steele stated that right now that completion of this task was not possible. Representative Thimesch interjected at this point that he has brought guests from the KDHE that may have a way to allow the project to complete this task.
The guests introduced themselves as Sharon Patemode and Dr. Lou Sottie from KDHE. They did want to make the point clear that they do not have a list of Gulf War veterans or children of Gulf War veterans that may have birth defects. They did say that they could possibly match the list of children of Gulf War veterans to their data containing information of birth defects noted on the birth certificate, and data of congenital birth defects that they have from another department of KDHE. Dr. Steele noted that we do not have a registry of children of Gulf War veterans in the state. The discussion of possibly matching information based on the fathers name was discussed. Some of the difficulties involved would be the variations on spelling of names, etc. Birth date of the Gulf War parent may also be a possibility. Dr. Sottie also cautioned that the birth defect information on the birth certificate is not as complete as we may want. Also, future birth defects that may appear since birth do not have to be reported to KDHE. The majority of information that they have on birth defects of that kind come from the information that is gathered at a department of KDHE that helps compensate families financially for getting different types of treatments for the child with a birth defect. She notes that this is incomplete data because not all families will utilize this service that KDHE offers. Hospitals are also required to report to KDHE birth defects that they diagnose later, or information of hospitalizations because of a birth defect. Now, this information only gives a count, and does not include any personal information. This information would not be helpful in explaining if a parent of these children are Gulf War veterans. Senator Salmans asked Dr. Sottie if the Kansas Gulf War Veterans Health Initiative could have any input in future designs of the birth defect information on the state birth certificate. Dr. Sottie said that would be a possibility that information that we thought might be necessary to gather could be included on future birth certificates. Senator Salmans wanted the project to specifically note that possibility. Senator Salmans also noted that if this project was to be undertaken, then a fiscal note would have to be drawn up to submit to the legislature. Dr. Steele said that KDHE would have to request the money, because the Kansas Gulf War Veterans Health Initiative does not have the funding to undertake this project right now. Representative Thimesch suggested that it would be fairly simple for the Kansas Gulf War Veterans Health Initiative to take the database we have and send a mailing to everyone on the list requesting that they voluntarily submit the information about birth defects in their children. Dr. Steele reminded everyone that we do have data on birth defects in children of Gulf War Veterans, and that information could be used to help design the birth defects section on the birth certificate, but, we do not have specific information on specific children. Senator Salmans finished the discussion of this topic by decided that doing a data match with KDHE is very possible, it just needs to be re-assessed and funded by the state. Because it is required for us to do by statute, this makes the funding of the project a high priority.
At 2:44 Dr. Neuberger announced that he was having to get off the line to attend another meeting, he was not sure when he would return.
Dr. Steele finished tasks eight through eleven and confirmed that they are all currently being undertaken, or are scheduled in the near future. Senator Salmans emphasized how important it is to make sure that we complete the task of informing Gulf War veterans about what services are available to them at the state and federal levels. A couple of steps to complete this informational outreach, we need to target the audience, and to make sure we have facts and information correct before we give the veterans the information of what they are entitled to as a Gulf War Veteran. The board also discussed the possibility of having a service worker from the Veterans Commission at the town hall meetings to assist any Gulf War Veterans with specific questions. Senator Salmans and Representative Thimesch thought that with the publicity around the release of the study Dr. Steele should come over to the state legislature and testify to the full committees that they determine have an interest in the results of the first study. Senator Salmans and Representative Thimesch will make the arrangements for Dr. Steele to give testimony. Dr. Oehme thought it would be important that the state legislature knows that what has changed in the data that Dr. Steele has assembled is that now it is basically scientific fact. It cannot be ignored, and the last time she gave testimony, it was previously only hearsay. This is why the state legislature should be informed of what the project has accomplished here.
Future of Kansas Persian Gulf War Health Initiative: Advisory Board Senator Salmans recommended that with the possibility of either himself, or Representative Thimesch not being back next year (because of the elections), that the Advisory Board discuss what they see for the future of the project and the board itself. He noted that one important aspect to realize is that the project needs to be able to answer to the state legislature why this board and project should continue. As a board, they also need to determine, what future questions are out there that have yet to be answered for Gulf War veterans. Questions posed to the board by Senator Salmans were; do we need to adjust the time period that we are thinking of using to accomplish our goals, is there revisions to the statutes creating the Kansas Persian Gulf War Veterans Health Initiative that need done, how often does the advisory board actually have to meet, does the project actually need an advisory board, and can the Kansas Persian Gulf War Veterans Health Initiative Program be handed over and be part of the VA with only a few members advising the project? If these questions are answered by the end of the calender year (2000) then the advisory board can be prepared to address these issues during the next legislative session. Jim Bunker responded to Senator Salmans by urging Senator Salmans to keep in mind the importance of continuing an advisory board to the project. Mr. Bunker feels very strongly that the board needs to continue for three or four more years and use this time to meet our goals Representative Thimesch feels very strongly that there is much more work to be done in the future. He wants to continue to work together as a board meeting at least four times a year to check on the progress that is being made. Jeff Lawson feels a little torn in making a decision now. He feels like we have a lot of work to do. He would like to make sure that the board continues to be a part of the project throughout 2001 and 2002 making sure that the information discovered in the first study is given to the Gulf War veterans of Kansas. He felt if the advisory board abandoned this part of their mission, it would be unfair to drop all the work on Dr. Steele or Tonya. Mr. Lawson also feels very strongly that the Kansas Persian Gulf War Veterans project should look in the future for how we will be funded.
Major Raby asked Dr. Steele for her opinion on if she felt that she needs to continue to have an advisory board. Dr. Steele responded that she appreciates the ongoing feed back that the advisory board can give the project. But, in regards to the research and study, those projects have already been planned out and do not need any input from advisory board members. If we want to look at additional funding, or hold hearing for veterans to testify at, the advisory board could be invaluable in that aspect. Dr. Oehme feels very gratified that the board is even having this discussion. He believes that having this discussion is an indication that a part of the boards goals have been accomplished. One major accomplishment that has been achieved by the board is the network of contacts that have been established. Knowing the ability of being able to contact in a fairly easy way via e-mail or telephone hook-up may actually help keep the advisory board together, but we could contact and gather information in a less formal way.
Future Meeting Agenda Suggestions Senator Salmans recommended that the board meet sometime in late November or December. He recommended that at the next meeting the advisory board be presented with ideas for how the town hall meetings will take place. Salmans also wanted to understand how the mailing will take place. He wanted the advisory board to be prepared to make suggestions on how to put together the town hall meeting agenda. Salmans would really like to see how the newsletter will be laid out. Senator Salmans also recommended that before the next time the advisory board meets, each member of the board should send to Dr. Steele their own personal ideas of what they see the future mission of the advisory board being. These ideas can be discussed at the next meeting and the board can decide which of these goals they would like to follow. Also, he would like to discuss what cooperation we could implement with KDHE.
Dr. Oehme recommended gathering more feedback from veterans about their health care treatment and concerns. His vision of doing this would be through a calling log tracking the calls and the type of calls that the hotline recieves. Senator Salmans would like an informal report of the types of complaints and feelings that we are receiving at the project. Also, he would like to know the type of information that we are giving to the veterans when we call in. What are we saying to Gulf War Veterans? Representative Thimesch would like to know if we are directing veterans to where they could make complaints about whatever they are complaining about. He feels if a summary report about what phone calls are about could help give them some backing when they try to apply pressure for help for Gulf War veterans.
Dr. Neuberger returned at this point (via phone).
Dr. Oehme suggested the possibility of sending the veterans on the mailing list a questionnaire that could give the board an idea of what direction that Gulf War Veterans would like to see an agency like ours go in. Minutes of the March 29, 2000 Meeting Senator Salmans suggested that we vote on the minutes as they stand, Dr. Oehme moved that we vote, Senator Salmans seconded him. The minutes of the May 29, 2000 meeting were approved by the board unanimously.
Dr. Steele updated the board on whose board positions were up to reappointment. Currently Robert Hayes resignation has not been accepted by Senator Salmans yet and Dr. Neuberger has been reappointed to the board by the KCVA. The meeting was adjourned at 3:56pm by Senator Salmans. |
