(Editor's note: A link to the current draft of the plan is included below)
(91outcomes.com) - As news of the development of a new plan to direct and guide VA's medical research related to Gulf War veterans has come to the public's attention, many questions have also emerged. Why is it needed? How is this different from past VA "efforts"? Why now?
More than twenty years after the 1991 Gulf War, the facts are stark: The IOM estimates 250,000 of us -- about one in every three -- are actively suffering from otherwise unexplained chronic multi-symptom illness scientifically and statistically determined to be associated with our Gulf War service.
For our medical clinician and researcher allies and us, we call it Gulf War Illness or Gulf War Syndrome. There is no cure, and with one limited exception there are no proven effective treatments.
Overcoming the Past
A key question for many in our disabled Gulf War veteran community has been related to deep and justified distrust rooted in the past, where the bulk federal government efforts seemed to us to be aimed more at proving there was nothing wrong with us than at helping us overcome -- ar adapt to the "new normal" of living with -- our service-caused disabilities.
That's not to say there hasn't been any effort towards helping Gulf War veterans. In fact, more than $300 million has been spent by the federal government on a huge portfolio of scientific research that DoD and VA call Gulf War research.
However, a closer look shows that much of that research has been expended on trying to prove stress was all that was wrong with us. It wasn't. Much was expended on trying to show what was wrong with us was the same as after every war. It wasn't.
As an example, one "research" study "proving" this that was touted by the DoD for years but upon closer look was "researched" not by a medical doctor or neurological scientist, but by an English professor examining war novels instead of uniquely ill patients. (For a better analogy, she should have been analyzing Plato's allegory of the cave, with researchers like her only interpreting ill Gulf War veterans' shadows, as if they were at all descriptive of ill Gulf War veterans' reality.)
Some of that research has been on Depleted Uranium, a deep source of concern among ill Gulf War and other veterans. But on closer look, it's another matter altogether. For Gulf War and other veterans, our most probable exposures to DU were inhaled or ingested microfine DU particulate matter in DU-bombed military vehicles and buildings. Instead, the "Gulf War research" portfolio includes a raft of studies on DU pellets. Embedded in rodents. That has found little to nothing. To put it plainly, that's like going into a room with your eyes closed, sticking your head in a corner, opening your eyes, and then announcing that the room is empty, when in actuality of course you haven't even begun to look around.
To make matters worse, in determining whether or not it was going to assist these seriously disabled veterans with disability benefits, VA in the past relied heavily if not exclusively on Institute of Medicine reports analyzing this body of flawed-from-the-get-go research the overlooked the realities of Gulf War veterans' chronic multi-symptom illnesses and found little to no explanation for what was wrong. To many in the ill Gulf War veteran community, it didn't seem to matter that it was clear they were ill, disabled, and suffering -- the federal government seemed to be intently focused in the corner of the room discounting them, their illnesses, and their inability to function the way they always had before.
So perhaps some who might be new to getting to know our community will forgive those who have grown cynical of these efforts, and distrustful of those who tout them as some sort of achievement. Perhaps in this context outsiders might understand the anger, frustration, and outrage that still overcomes some in our community all of the time and nearly all in our community some of the time.
And for those of us who remain active in our community, the stories we hear every day... every hour... are heartbreaking. We hear from our suffering fellow Gulf War veterans, seeking comfort from their fellow veterans in knowing they're not alone in their suffering... We hear from terrified Gulf War veterans' spouses desperately grasping for answers and help in Facebook chat groups instead of VA doctors' offices as they see their Gulf War veteran slipping further and further downwards...
And so, for all that spending and all that work, there is no cure, and with one limited exception, there are no proven effective treatments.
In short, any of us should be able to see distrust for a new report when the seemingly endless parade of commissions, committees, task forces, and working groups that has not yet brought tangible change to our community.
20 Years Later, the Beginnings of a Plan
During Research Advisory Committee on Gulf War Veterans' Illnesses (RAC-GWVI) meetings in Washington, DC on Feb. 28 and Mar. 1, 2011 much of the focus was on recognizing the 20th anniversary of the 1991 Gulf War and looking forward to all that still needed to be done.
Perhaps it was this retrospection that brought to the forefront pent-up frustration related to the lack of a coherent VA strategy to guide Gulf War Illness research. Out in the open during these RAC discussions, the frustration bubbled up and boiled over, and so the process began.
VA's initial plan fit neatly on less than two typewritten pages.
Long and Short of the Process
The development of a true strategic plan for Gulf War Research has involved a mind-numbing array of committees, VA offices, meetings, teleconferences, drafts, and discussion -- usually collaborative, sometimes heated.
This collaboration over the last several months has included the the RAC-GWVI, the VA Gulf War Steering Committee (GWSC) -- which is composed of members of the RAC and (National Research Advisory Council), and VA staff. t
Following extensive work by the still-new Gulf War Steering Committee and aided by VA staff, a draft strategic plan had already reached 42 pages by the time it was discussed at the RAC's next meeting in late June 2011.
Over the course of various meetings, the GWSC, RAC, GWSC, and VA staff worked steadily on the plan during the Summer, Fall and Winter, including through nine Gulf War Research Strategic Plan Action Committees (see below). The committees were aided in their work by the augmentation of VA and non-VA researchers.
Next steps for the current draft of the plan include a joint RAC-NRAC-GWSC working session on the Gulf War Research Strategic Plan on Jan. 31 in Washington, DC. This will be the first time the full NRAC has been involved.
Given its Congressionally mandated primacy over the federal government's Gulf War research efforts, it seems likely the RAC will continue to remain heavily engaged in completing the plan and monitoring its implementation.
The Way Forward
The military likes to frequently use the phrase, "the way forward," and it seems fitting to use in describing this plan.
As an ill Gulf War veteran myself with a firsthand view of the justifiable cynicism and distrust of the ill Gulf War veteran community, I believe this Gulf War Research Strategic Plan could represent a way forward from the culmination of more than 20 years of pain and suffering by a quarter of a million veterans, most of whom were very young when their suffering began, and who to date remain feeling abandoned by a system that appears to them to be more interested in counting them and their symptoms and their disproportionately growing numbers of diagnosed diseases than in helping them get better or adapt to their life as a seriously disabled veteran.
I believe this plan could be different from past efforts for several reasons:
- It could be different because of its overarching goals. In the past, some efforts have been aimed at proving Gulf War Illness is real, a necessary stepping stone paving the way to this newest effort. Participants in this planning process have fought hard to keep one thing first and foremost in this plan: this plan must remain tightly focused on improving the health and lives of ill Gulf War veterans. Ill Gulf War veterans' sense of urgency must remain reflected in the final plan.
- It could be different because of the process. To date, this plan has not been a top down-product written by one person or by a small, insulated group from a single government office or committee. To date, the plan has been the work of dozens of people who have worked through a variety of offices, committees, and subcommittees in a sifting and winnowing process. Continuing this inclusive, consensus-driven process is key to ultimate success.
- It could be different it it contains tangible outcomes and metrics to measure success. To be successful, this plan must retain tangible action items, measurable milestones of progress, and priorities for what kinds of research should be funded earlier rather than later and from research funds designated as "Gulf War" or other VA research. If these are not present in the final document, then this plan may very well become just another book to file in the Gulf War bookshelf, containing huge amounts of knowledge but having little real impact in improving the health and day-to-day lives of ill Gulf War veterans. If this plan is accepted and implemented with tangible action items, measurable milestones, and priorities -- and VA wholly commits to it -- then the quarter-million Gulf War veterans whose lives it is intended to improve will finally see a VA-led research effort aimed at developing treatments at improving their health and lives. With regards to VA research, this would be a very different direction from even the most recent past.
- It's been different to date because advisors and implementers have been integrated throughout its development. It's not advisory, unlike so many well-intentioned Gulf War health related reports that are far too easy for implementers to ignore. Yet, it involved advisors, unlike most Gulf War related plans that may have been well intentioned but have far too often missed the mark entirely on the realities of Gulf War health and the needs of those afflicted. For this process, advisors included some of the best clinicians and researchers in the Gulf War Illness field, and alongside them the full and open input of representative ill Gulf War veterans. Implementers included key staff from across the relevant VA offices who will ultimately be responsible for implementing the plan's specific action items. Advisors also included the oversight bodies whose role includes "watchdog" oversight functions to help ensure action items are accomplished within designated timeframes. While perhaps not perfect, this uniquely integrating aspect has so far helped educate and gain buy-in from all sides and increased the likelihood for a consensus of support for its final version.
- It's different when there are few surprises. To maintain buy-in, those investing their time, energy, and effort into creating this plan must retain faith that staff writing and editing the document do so fully in keeping with what was agreed upon. To the largest extent, that has happened successfully to date. Notable exceptions are sure to be the cornerstone of debate in the near future. The discovery of unexpected and unapproved substantive changes in "next" drafts creates distrust, at best, and can shut down the process entirely at worst because all sides involved always retain a "nuclear" trump card -- they can always walk away and "blow up" the plan if they deeply disagree with it. Most stay at the table because they believe that is where the real decisions are being made and where they are able to work collaboratively toward a consensus product that is both visionary and viable, that is needs-meeting but also genuinely able to be achieved, and where all parties needs are respected, most especially the targeted population of ill Gulf War veterans.
All of these positives show that it's possible to have a solid plan that would be the strongest effort to date to help the quarter-million Gulf War veterans still suffering from IOM-associated chronic multi-symptom illness.
Without tangible metrics and milestones, this document's potential will likely revert from a plan to achieve what will be, to a mere vision for what could be -- very different indeed.
Without prioritization of the many proposed action items, everything becomes a priority. As a very wise person once told me, "If everything is a priority, then nothing is a priority."
Finally, this plan has to date been aimed squarely at improving the health and lives of the quarter-million Gulf War veterans suffering from a condition now accepted by the Institute of Medicine as a diagnostic entity. We as a nation must aid these quarter-million veterans suffering from Gulf War Illness. The urgency for finalizing and implementing such a plan has only increased since this process first began nearly one year ago.
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The Draft Plan - "Gulf War Research Strategic Plan"
RECOGNIZING THE PLAN IS LIKELY TO HAVE SUBSTANTIAL EDITS MADE ON JAN. 31, the current draft plan (as of Jan. 23, 2012) is available at:
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ADDITIONAL BACKGROUND: A WHO'S WHO
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RAC-GWVI
The RAC was created by an Act of Congress, the Persian Gulf War Veterans Act of 1998, as the result of intense advocacy by the National Gulf War Resource Center and other veterans advocates. Its members are appointed by the VA Secretary from among the general public and mandatorily include Gulf War researchers and Gulf War veterans.
The mission of the Committee is to make recommendations to the Secretary of Veterans Affairs on government research relating to the health consequences of military service in the Southwest Asia theater of operations during the Persian Gulf War.
According to its charter, the guiding principle for the work of the Committee shall be the premise that the fundamental goal of Gulf War-related government research is to improve the health of ill Gulf War veterans. Research priorities will be judged against this standard. NRAC
According to its charter, the VA Secretary's National Research Advisory Council (NRAC) advises the Secretary and the Under Secretary for Health (USH) and makes recommendations on the nature and scope of research and development sponsored and/or conducted by the Veterans Health Administration (VHA) to include:
(1) the policies and projects of the Office of Research and Development (ORD);
(2) the focus of research on the high priority health care needs of Veterans;
(3) the balance of basic, applied, and outcomes research;
(4) the scientific merit review process;
(5) the appropriate mechanisms by which ORD can leverage its resources to enhance the research financial base;
(6) the rapid response to changing health care needs, while maintaining the stability of the
research infrastructure; and
(7) the protection of human subjects of research.
According to its charter:
"The [NRAC] advises the Secretary and the USH on all matters related to the research and development program, and conducts analyses and develops reports or other materials as necessary. In order to avoid duplication of effort, the Council is encouraged to review deliberations of other committees or entities, and may incorporate or otherwise use the results of deliberations of such entities. As a part of its function, the Council may accept for consideration suggestions for research and development issues from Congress, VA and non-VA scientists, Veterans and their representatives, and the general public."
GWSC
The Gulf War Steering Committee (GWSC) is composed of four members of the RAC-GWVI and five from the NRAC. One RAC appointee is a Gulf War veteran.
ORD Gulf War Research Strategic Plan Action
Committees ("Nine Committees")
1. Subcomittee
for Review and Revision
James Binns (RAC-GWVI)
William Goldberg – convener (VA ORD)
Anthony
Hardie (GWSC; RAC-GWVI)
Alex Ommaya
(VA ORD)
2. Databases/Medical
Surveillance Working Group
Niloo Afari
(UC-SanDiego)
Edward Boyko
(VA Seattle)
David
Christiani (Harvard U; GWSC)
Steven
Coughlin (VA OPH)
Diane
Dannenfeldt (VA Chicago)
Erin Dursa
(VA OPH)
Anthony
Hardie (GWSC; RAC-GWVI)
Rebecca
McNeil (VA Durham)
Michael
Peterson (VA OPH)
Domenic Reda - convener (VA Chicago)
Joe
Salvatore (VA)
Lea Steele
(Baylor U; RAC-GWVI)
3. Gulf War Case Definitions Working Group
David Atkins
(VA ORD)
Victor
Kalasinsky (VA ORD)
Robert Kelch
(U Mich; GWSC; NRAC)
David Korn (Harvard
U; NRAC)
Gudrun Lange
(VA NJ)
Lea Steele - convener (Baylor U; RAC-GWVI)
4. Genetics/Genomics Working Group
Carrolee
Barlow (RAC-GWVI)
Floyd Bloom
(Scripps; RAC-GWVI)
Tilo Grosser – convener (U Penn; GWSC)
Henry Heng
(Wayne State U)
Catherine
McCarty (Essentia Inst Rural Health)
Sumitra
Muralidhar (VA ORD)
Steven
Schutzer (UMDNJ)
5. Biomarkers Working Group
Fiona
Crawford (Roskamp Institute)
Tilo Grosser
(U Penn; GWSC)
Jeffrey
Mason (VA DC)
James O’Callaghan
(CDC; GWSC; RAC-GWVI)
Kimberlee
Potter (VA ORD)
Kimberly Sullivan – convener (Boston U;
RAC-GWVI)
6. Animal Models
Carrolee
Barlow (RAC-GWVI)
Loren Koller
(GWSC)
David Korn (Harvard
U; NRAC)
Audrey
Kusiak (VA ORD)
James O’Callaghan – convener (CDC; GWSC;
RAC-GWV)
Ashok Shetty
(VA Texas)
7. Symptomatic and Specific Treatments
William
Goldberg (VA ORD)
Julia Golier
(VA NY)
David Kearney
(VA Seattle)
Robert Kelch – convener (U Mich; GWSC; NRAC)
Gudrun Lange
(VA NJ)
Kimberly
Sullivan (Boston U; RAC-GWVI)
8. Coordination/Communication between
Partners and Researchers
Christine
Amereihn (VA ORD OPA)
Victoria
Cassano (VA)
Gina Clemons
(VA ORD OPA)
Melissa
Forsythe (CDMRP)
Connie Raab
(VA OPH OPA)
Richard
Wenzel (Va Commonwealth U; GWSC; NRAC)
Roberta White – convener (Boston U; GWSC;
RAC-GWVI)
9. Translation of Research into Practice
Joseph
Francis (VA)
Margaret Cary
(VA)
Robert
Jaeger (VA ORD)
Brian
Mittman (VA LosAngeles)
Matthew
Reinhard (VA DC)
Adam Such (RAC-GWVI)
Richard Wenzel - convener (Va
Commonwealth U; GWSC; NRAC)
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Coordinating Committee
James Binns
(RAC-GWVI)
Maximilian Buja – convener (U Texas
Houston; GWSC)
Robert
Jaeger (VA ORD)
Victor
Kalasinsky (VA ORD)
Alex Ommaya
(VA ORD)
Adam Such (RAC-GWVI)
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