[Congressional Record (Bound Edition), Volume 150 (2004), Part 6]
[Extensions of Remarks]
[Pages 7698-7699]
[From the U.S. Government Publishing Office, www.gpo.gov]




  REGARDING THE VALUE OF LONG-TERM RESEARCH STUDIES IN UNDERSTANDING 
                     HEALTH RISKS AND CONSEQUENCES

                                 ______
                                 

                            HON. LANE EVANS

                              of illinois

                    in the house of representatives

                        Tuesday, April 27, 2004

  Mr. EVANS. Mr. Speaker, I rise today to recognize an important forum 
that took place in our Nation's capital last month. This forum, called 
by the U.S. Medicine Institute, convened scientific leaders from 
throughout the Federal Government to discuss the value of longitudinal 
studies in determining populations' risks for developing various health 
care conditions or diseases.
  Science has long recognized the value of such studies, but it is 
critical for us as policymakers to also understand their role in 
helping inform our decisions. As the Ranking Member of the Committee on 
Veterans' Affairs, I am aware of numerous occasions upon which the 
Committee employed data from such studies to determine matters related 
to compensation for service-connected conditions and eligibility for 
health care benefits. For example, Congress has used longitudinal 
studies to determine conditions that should be compensated due to 
veterans' exposure to dioxin and to identify the effects of various 
exposures on the health of veterans from the first deployment to the 
Gulf. In the near future, VA intends to propose a followup study that 
will examine the long-term effects of post-traumatic stress disorder on 
veterans. This will provide important information to current and future 
generations of veterans.
  Determining the effects of war-time exposures on veterans' health is 
often a convoluted task. During service, troops may be exposed to a 
variety of agents all of which may have health effects that are poorly 
understood. In combination, these agents may also have different 
effects. Further complicating matters, some exposures are known to 
cause health effects that do not appear until many years later. There 
are often too many unknown factors to determine exactly which troops 
were exposed to which agents at any point in time.
  While there have been some limited improvements in documentation of 
troop locations, troop exposures and servicemembers' health before, 
during and immediately following deployment, large information gaps are 
likely to exist well into the future. Longitudinal research can help 
fortify available information and ensure that Congress and the 
Administration give individuals the benefit of the doubt.
  I am pleased that the U.S. Medicine Institute saw fit to give this 
important topic its time and attention. I am offering the Institute's 
executive summary from its March 4, 2004 forum entitled ``Taking the 
Long View: The Value of Studies Over Time'' for inclusion in the 
Congressional Record in the hopes that all Members will recognize the 
importance of supporting these studies to better inform our policy 
decisions.

          Taking the Long View: The Value of Studies Over Time

       Long-term studies help answer specific questions about 
     health risks and consequences over time and often deliver 
     byproducts not originally envisioned but with ongoing, 
     exponential value. Consequently, long-term studies are 
     essential for informed policymaking and provide liberal 
     return on the substantial investment they entail.
       These were the views interwoven throughout a forum held on 
     March 4, 2004, by the nonprofit U.S. Medicine Institute for 
     Health Studies. The consensus among panelists and 
     participants was that long-term studies undoubtedly deliver 
     great benefit to society at large, as well as to the specific 
     group or groups targeted in a particular protocol. For 
     example, the 22-year-old Ranch Hand study of agent orange 
     exposure in Vietnam offers a trove of longitudinal data on 
     the aging process in men--with much of this data yet to be 
     tapped.
       Forum deliberations found long-term studies of such value 
     in answering questions relating to public health that they 
     should become a byproduct of how ``we normally do business'' 
     in healthcare--especially as digital patient records make 
     collection and analysis of data amenable to routine analysis.
       These edited proceedings present the remarks of panelists 
     at the forum and the ensuing discussion among participants. 
     Observations presented during the group's deliberations 
     include:
       Long-term studies are essential for the understanding of 
     disease and, consequently, for disease management. They give 
     policymakers the data and findings needed to make rational 
     determinations about eligibility for compensation relating to 
     occupational exposures.
       As long-term studies are done in future, they should be 
     accompanied by ``clear'' business case analyses, ``so that 
     there really is a clear understanding of the rewards that 
     come from the . . . investment in conducting these studies.''
       As disease patterns among Americans shift away from the 
     acute toward chronic, multiple conditions, long-term studies 
     will assume a greater role, because they allow examination of 
     particular populations and pick up a ``different set of 
     information'' about risk factors than short-term clinical 
     trials can.
       Decades-long studies such as the Framingham Study that 
     delineated risk factors in heart disease and the Harvard 
     Nurses Study of risk factors for major chronic diseases in 
     women are well-known examples of the importance that long-
     term investigations can have in shaping health practices and 
     policies.
       Long-term studies conducted by federal agencies need the 
     stability afforded by designated funding, rather than having 
     their funds come through basic agency appropriations.
       The Veterans Affairs and Defense departments use long-term 
     studies to help answer questions about potential deleterious 
     health effects in troops from exposures during deployments--
     questions now anticipated for every deployment: Who was 
     exposed; are those exposed showing unusual disease; are those 
     exposed dying at unusual rates or from unusual causes, or has 
     their health changed over time; do those exposed show higher 
     incidence of cancer(s); do the children of those exposed 
     exhibit higher rates of birth defects?
       A classic longitudinal study is the Air Force Ranch Hand 
     Study, initiated in 1982, which has seen the collection of 
     74,000 biological specimens and 19,000 x-rays and has 
     involved more than 13,000 physical exams, more than 20,000 
     questionnaires and thousands of records on conception and 
     birth. In addition, more than 2,800 death records have been 
     obtained.
       This study is scheduled to terminate in 2006, but that 
     directive has met with controversy on grounds there is much 
     information yet to be mined. To resolve whether the study 
     should be continued, Congress has asked the Institute of 
     Medicine to examine the scientific merit of retaining and 
     maintaining the medical records, specimens and other data 
     collected for the study; the potential value of extending the 
     study; and the advisability and costs of making study 
     specimens available to independent researchers.
       An important longitudinal study that is just beginning in 
     the military is the Millennium Cohort Study, which involves 
     an initial study group of 10,000, with 20,000 more to be 
     added this year and another 20,000 to be added in 2007. The 
     study will examine employment exposures and post-deployment 
     consequences in a group exposed in Kosovo or Southwest Asia, 
     compared to a nonexposed cohort.
       Study participants will be followed every three years by 
     postal surveys; demographic and health information will be 
     obtained and correlated over a 22-year period.
       The Veterans Affairs Department regularly turns to the 
     Institute of Medicine for objective, independent literature 
     reviews of the long-term effects of exposure on troops--for 
     Vietnam, for the first Gulf war and for the current Iraq 
     conflict, for example. Results are used to help set 
     compensation policy.
       Ti-service longitudinal studies might best be centralized 
     and coordinated through the Uniformed Services University of 
     the Health Sciences, which encompasses all service branches 
     as well as the U.S. Public Health Service.
       Doing longitudinal studies often is difficult in the 
     academic setting, where there is pressure for immediate pay-
     off. At the same time, studies produced by federal 
     researchers all too often are rejected by regular scientific 
     journals as being of limited interest because they focus on 
     military or veteran populations.

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