Testimony of

James J. Tuite, III

Chief Operating Officer, Chronix Biomedical, Inc.

Before the  Subcommittee on National Security,
Veterans Affairs, and International Relations

Of the

Committee on Government Reform
U.S. House of Representatives

January 24, 2002

 

Chairman Shays, Ranking Member Kucinich, Members of the Subcommittee, Lord Morris and Mr. George, thank you for your invitation to present testimony today on "Gulf War Veterans' Illnesses:  Health of Coalition Forces."  As you know, I have been involved in this issue since 1993, first as a professional staff member of the Senate Committee on Banking, Housing, and Urban Affairs, and then as an independent consultant and researcher associated with the Gulf War Research Foundation.  I have continued to follow this issue after I moved into the biotechnology industry.  I have also co-authored a paper on this subject, published in the May 1999 edition of Clinical Diagnostic and Laboratory Immunology along with Dr. Urnovitz and others, entitled "RNAs in the Sera of Persian Gulf War Veterans have Segments Homologous to Chromosome 22q11.2." Dr. Urnovitz and I have previously testified before this subcommittee on that research.  

I commend your ongoing interest in the health of Gulf War coalition veterans.  Continuing oversight will be necessary to ensure the provision of appropriate care for Gulf War veterans. 
As you know, the 1998 Gulf War Veterans Act established a timeline for reviewing the science and making determinations of service connection for veterans who are suffering often debilitating, chronic, and degenerative illnesses to determine what illnesses might have been connected to their wartime exposures.  However, the timelines outlined in that legislation have been waved aside by the implementing agencies. 

Many millions of dollars have been spent by the Department of Veterans Affairs (VA) and the Department of Defense (DOD) on this issue, and much of that money has been wasted in my opinion. Far too much money has been spent on badly designed internal studies and on going reviews of the literature. The Department of Defense, for example, awarded monies to RAND
to conduct scientific literature reviews, as though other researchers had not already done so. 
I venture to guess that there is not a researcher worth his or her salt in this room who did not conduct, and who does not frequently update, their review of the literature relating to the veterans' exposures and illnesses.  Literature reviews are a basic, fundamental first step in any scientific initiative.  Asking RAND analysts to read the same papers may make those analysts smarter, but it does little to further the science, and may hamper it by reducing the amount of funding available for basic research and treatment.  Further, the delays caused during the bureaucracies' technical and policy review of the reviews waste precious time in providing the needed health care to these veterans.

As noted above, the Institute of Medicine (IOM), in response to the 1998 Act, is also conducting literature reviews on behalf of the VA and the National Academy of Sciences.  However, the IOM is not adhering to the timeline prescribed by the law and has chosen to follow a much longer timeline.  In testimony before this subcommittee, the IOM explained that their methodology is one based upon consensus.  While consensus and compromise is an absolute necessity in politics, it will very often be wrong in science.  In science, the goal is to achieve the right answer, not simply the answer that everyone can agree upon.  Some people will be wrong or have preconceived ideas based upon outdated or biased information.  Why should their errors be allowed to skew the answer away from the truth?

  Congressional oversight of this issue also continues to be necessary because of this government's history of withholding information that might prove embarrassing or expensive.  Studies showing excessive rates of a specific neurological disease among veterans and of birth defects among the children of Gulf War veterans were in official review for years, even as Congressional efforts to provide assistance to the children of Gulf War veterans were being directly opposed by past administration officials. 

Inadvertent or even intentional bias can be interposed upon a scientific study design or methodology as a result of the government's control over research conducted using government funds.  Study design and research results should not be stifled; rather, the open, independent, scientific peer-review process should be allowed to evaluate the scientific validity and importance of the study and its results, not a government bureaucracy concerned with the potential political fallout of research conclusions.  Research, and the unconstrained dissemination of research results, can only further the effort to assist Gulf War veterans.  

We also need to take steps to encourage greater private sector participation in these and similar research efforts.  There are a number of indirect deterrents to private partnerships with the government in addressing some public health and other issues. For example, in some cases the United States Government retains a nonexclusive or nontransferable, irrevocable, and paid-up license to practice, for governmental purposes, inventions that are developed in cooperative research.  If the discovery in question will be used primarily for government purposes, rather than confront this obstacle, companies often opt to avoid these types of agreements.  

In some cases, the royalties being paid to the federal government add to healthcare costs. In other instances, they are affecting the health of the biotechnology industry &endash; particularly in the case of low-margin diagnostics.  When profit margins are tight, as they are in a competitive market, and particularly in the area of supplemental diagnostic tests, and are further pressured by HMO payment schedules, paying a several percentage point royalty to the federal government may push a diagnostic out of the realm of good business sense.  This practice can discourage private sector firms from working with federal agencies in tackling even high priority public health issues. 

Government agencies and officials must be cognizant of the role, influence, and power of government.  The federal government was not intended by our nation's founders to interfere with private business except in the interest of the greater public good.  However, the greater public good is not well served by government policies that add burdensome costs that discourage private companies from addressing public needs.   

Nor should government agencies or officials discourage private companies from investigating emerging health issues by attaching to them official stigma.  In the case of Gulf War Syndrome, for example, the denials of the government that any problem existed, and the government's efforts to debunk or undermine scientific and medical research conducted outside of government agencies or outside of government control, may have resulted in a reluctance on the part of many researchers, and the pharmaceutical and biotechnology industries, to become involved in efforts to identify treatments for these soldiers.  When the government, in this case the DOD or the VA healthcare systems would be the primary market for such diagnostics or therapies, and the government insists that these illnesses are psychological and not physiological, few researchers and fewer companies will choose to risk their time, their reputations, or their capital.  It is simply not cost effective, no matter how tragic the consequences might be for the soldiers and their families.

Yet another example of the consequence of misuse of government influence is also linked to the Gulf War.  An inherent aspect of the security problems being experienced by the U.S. after the Gulf War results from the fact that during the war, we often ignored our equipment.  Over 14,000 chemical agent detection devices sounded repeatedly during the air war and every single alert was ultimately discounted as a false alarm.  In many instances, soldiers simply stopped putting on their protective gear, or were not ordered to don their protective gear because the alarms were not heeded.  For over ten years, the validity of these alarms and the soldiers' accounts have been countered by official denials.  So now we are many years behind in improving our chemical and biological detection gear, many years behind in modifying operational doctrine to better defend against similar exposures, a threat that now exists not only on the battlefield but may also exist on our streets, many years behind in identifying treatments for ill soldiers, and many years behind in complying with the VA's mission to care for our soldiers, their widows, and their orphans.   

To sum up, the U.S. has failed on three fronts:  First, military leaders failed to recognize the threat that confronted our forces during the war, to properly use existing detection and protection equipment, and to implement existing doctrine.  Second, the government failed to listen to our soldiers when they returned from the conflict.  Instead, the government questioned them, criticized them, scrutinized them, and dismissed them.  These soldiers still await a new initiative in which their illnesses are publicly recognized and in which the government attempts to heal them.  Finally, officials failed to correct the problems that led to these illnesses, primarily because they did not wish to admit that the illnesses existed or that they might have made mistakes.  The resultant situation is one in which our troops today remain at risk of facing the consequences of similar miscalculations in current or future conflicts.  

We will make significant progress in overcoming these failures only when we accept that something is wrong and look for innovative solutions. We are all here today to assist in accomplishing that end. On the veterans' health front, the search for innovative solutions must come by encouraging public-private partnerships specifically focused on treating the illnesses associated with the many exposures suffered by these veterans. Such an approach will benefit millions of other Americans suffering from similar chronic diseases.  To that end, I encourage the Committee, the Departments of Defense and Veterans Affairs, and the White House to demonstrate leadership in support of our veterans by:
 

A European study recently revealed that in France, prescription drugs are prescribed about six times as often as in the United Kingdom &endash; and the French government pays 100% of the cost. This may suggest that French physicians are a bit more proactive in the treatment of their patients.  That fact, combined with the reported stricter adherence to their chemical warfare doctrine, may provide insight into why there seem to be fewer reported cases of Gulf War illnesses among the French forces. In the U.S., many veterans find themselves outside of the government healthcare system altogether.  Others are faced with physicians skeptical of the seriousness of their complaints, in part because of pejorative comments that have been made by government officials regarding their condition.  Consequently, U.S. veterans may not be receiving the most aggressive treatment or the most innovative treatment of their symptoms.
 

Contrary to the belief of most Americans, veterans' health care at no cost is not, and has not been, available to all veterans for several decades. This outreach is particularly critical since many Gulf War veterans were reservists and may now be receiving care through the private healthcare system.  Others not counted within the VA and military system will be those veterans receiving private care as a result of the private health care coverage of their spouses.  

A strategy such as the one described above is necessary to assist the Secretary in identifying statistically significant increases in incidence of illness and providing medical care to these deserving veterans.  

These registries should also distinguish between those who served during the different phases of the operation -- before the war, during the war, and after the war -- to determine if there is a significant difference in the illness rates within these populations.   

Old technology treatment protocols are not providing us with the answers we need, in part because the varied and multiple exposures experienced by these veterans affect different individuals in different ways.  A one-size-fits-all regime will fail.  Unconventional or outside-the-box thinking that takes advantage of the newest advances in genomic research is also needed. The success of such an initiative will require the kind of public-private cooperation that I have suggested.  To foster that cooperation, existing hurdles must be removed and the enthusiastic support of the Department of Defense and the Department of Veterans Affairs will be required.  If this can be done, the Gulf War soldiers can be aided, and we will have a much better understanding of the health of the coalition forces and the conditions that led to their illnesses. With the information that is developed, we may also be able to aid millions of other Americans with similar chronic diseases.  

More real progress has been made by the Department of Veterans Affairs in recognizing the problems of Gulf War veterans in the last few months than was made in the preceding years.  Much more remains to be accomplished.  I hope that I have provided some suggestions for alternative approaches to be taken that might prove successful.

I thank the Committee for the opportunity to present this testimony. 

# # #

Return to Witness Testimony List  | Statements submitted for the Record

Return to VetCenter's Main Lobby