Monday, August 31, 2009

VIDEO: The CDMRP--Improving the Quality of Life for Our Warfighters, Their Families, and Our Veterans.

Military Health Research Forum logo
Written by Anthony Hardie, 91outcomes

( KANSAS City, Mo. - Monday, August 31, 2009//91 outcomes) -- Today's opening ceremony of the Military Health Research Forum in Kansas City, Missouri included a documentary video depicting the U. S. Department of Defense Congressionally Directed Medical Research Programs (CDMRP).
The video provides an overview of key CDMRP programs shows military leaders, researchers, and veterans, includinng "consumer reviewers" -- current and former military service members and their loved ones affected by the deployment health conditions for which CDMRP's programs are seeking cures and effective treatments to improve the affected veterans' health and lives.
The video features footage on several key CDMRP post-deployment health programs, including Gulf War Illness, brain injury, psychological health, and others.


All footage used in the video is for the sole purpose of depicting the CDMRP.

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The 18-minute video is available for online viewing at: https://cdmrpcures.org/press/index.php?blogId=2&sectionId=1&postId=13

Military Health Reseach Forum Opens in Kansas City

Military Health Research Forum logo

Written by Anthony Hardie, 91outcomes

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(91outcomes.blogspot.com - Kansas City, Mo. - Monday, August 31, 2009) -- Today's U.S. Department of Defense Military Health Research Forum invitation-only conference opened in Kansas City, with over 500 attendees, primarily scientists and consumer reviewers.

Hosted jointly by the Congressionally Directed Medical Research Program (CDMRP) Peer Reviewed Medical, Gulf War Illness, Psychological Health, and Traumatic Brain Injury (TBI)
research programs, the MHRF has brought together scientists, clinicians, consumer advocates, policymakers, and the military to learn about research and product development advancements supported by the host programs.

Today's opening presentation was initiated by a moment of silence -- a CDMRP tradition -- by consumer reviewere Master Sergeant Todd Nelson, an Iraq War IED survivor with visibly severe burns over 18 percent of his body, including most of his head and face. Nelson called on conference attendees to remember all the fallen, and gave a charge to the scientists to make a difference for injured combat veterans.

Also among the opening speakers were U.S. Army Major General James Gilman, M.D., commanding general of the U.S. Army Medical Research and Materiel Command (USAMRMC) and U.S. Navy Captain E. Melissa Kaine, M.D., F.A.C.P , director of the U.S. Department of Defense's Congressionall Directed Medical Research Program.

The presentations were folllowed by a CDMRP video, with interviews and interaction action footage of CDMRP scientists, consumers, and staff.

On Tuesday, September 1, The Honorable Ellen Embrey, Acting Principal Deputy Assistant Secretary of Defense for Health Affairs, will introduce and moderate a plenary session "The New Face of War." Her presentation will be preceded by four concurrent sessions: Complementary and Alternative Medicine; Therapeutic Applications of Virtual Reality; Defining Gulf War Illness; and, Advances in Imaging Techniques.

The "Defining Gulf War Illness" session will include a panel discussion featuring Dr. Lea Steele (Ph.D.), past Scientific Director, U.S. Department of Veterans Affairs Research Advisory Committee (RAC) on Gulf War Veterans' Illnesses, Dr. Robert White, current RAC scientific chair, and COL Charles Engel, U.S. Army. Gulf War Illness Research Program consumer reviewers Chris Kornven (Helenville, Wis.) and Anthony Hardie (Madison, Wis.) are also on hand during the conference, as are consumers of several of the other CDMRP programs.

On Wednesday, September 2, a group of eminent scientists and clinicians will discuss recent and remarkable advances in trauma care and rehabilitation, personalized medicine, neurology, and behavioral science during a presentation entitled, "Tomorrow's Medicine."

Also on Wendnesday, the session "Caregivers" will address issues faced by military family members and medical personnel assisting wounded warriors.

A round-table discussion of prosthetics, their current engineering, and future research directions in their developmen, entitled "Prosthetic Development," is scheduled for Thursday, September 3, during the morning concurrent sessions.

Other presentations during the four-day conference relevant to Gulf War Illness include "Assessment Tools," "Biomarkers," "Molecular Pathobiology," "Neuroprotection," "Challenges in Chronic Pain Management," "Neurogenesis and Depression," "Sleep," "Pain," and "Inflammation." Numerous other presentations relate to PTSD, TBI, and psychological health.

CDMRP's vision is to, "Find and fund the best research to eradicate diseases and support the warfighter for the benefit of the American public," while it's mission is to, "provide hope by promoting innovative research, recognizing untapped opportunities, creating partnerships, and guarding the public trust."

The following Department of Defense, Congressionally Directed Medical Research Programs (CDMRP)—Amyotrophic Lateral Sclerosis, Gulf War Illness, Lung Cancer, Peer Reviewed
Cancer (skin cancers and genetic cancers as related to exposure during deployments), Peer Reviewed Orthopaedic, Psychological Health (to include posttraumatic stress disorder)/Traumatic

Brain Injury, and Spinal Cord Injury—are looking for military personnel and/or family caregivers to serve as consumer* reviewers of scientific proposals to help determine the research that will be funded this year.

This program was established to fund and manage research grants designed to address the prevention, diagnosis, treatment, and mitigation of these conditions, diseases and/or illnesses.
Consumers participate in the scientific peer review process as representatives of those living with the condition/disease/illness that has touched their lives. They provide a broad perspective of condition-related issues important to their community. They may be survivors who have been affected by the conditions, diseases and/or illnesses or family members caring for individuals with the condition/disease/illness. Consumers who are not active duty military are nominated by their advocacy, outreach, support organization or treatment professional to participate in this important process. Consumers who are military personnel may apply directly.

If you are interested in learning more about this exciting opportunity call 301-360-2150, or e-mail Ann Dodelin at ann_dodelin@sra.com or Carolyn Branson at carolyn_branson@sra.com. You can also check the CDMRP Web site at http://cdmrp.army.mil/ for additional information.

Friday, August 28, 2009

VA Sec. Shinseki on Gulf War illness, Agent Orange: "We Will Get This Right"

Written by Anthony Hardie, 91outcomes

(91outcomes.blogspot.com - Friday, August 28, 2009) -- In a series of major policy announcements during the annual August round of veterans' service organization national conventions, newly appointed VA Secretary Eric Shinseki publicly recognized the plight of veterans afflicted by Gulf War illness and Agent Orange, and pledged that the VA under his leadership will, "get this right."

In key speeches before the Association of the United States Army (AUSA), American Veterans (AMVETS), Veterans of Foreign Wars (VFW), Disabled American Veterans (DAV), Blinded Veterans Association (BVA), and the American Legion (LEGION), Shinseki has repeatedly noted the serious problems affecting these veterans, decades after their military service, stating, "We must do better, and we will."

Shinseki was candid in his assessment of the challenges the new Administration faces in leading the VA, attributing problems to "someone cutting corners;" "failures in leadership, behavior and professional ethics;" and "systemic" issues.

"These issues will only be resolved when a sense of responsibility, accountability, and discipline is established throughout VA—from my office to the farthest reaches of our footprint," said Shinseki. "We are your advocates, and we have begun to retrain the workforce."

Gulf War illness issues -- which have long lingered unaddressed -- have been carefully noted by the new Administration, including through meetings with key Gulf War illness advocates and members of the White House Transition Team shortly after the election, correspondence by key veterans advocates and organizations, an ongoing series of Congressional oversight hearings into the impact of VA's previously limited scope of Gulf War illness research not focused on treatments or improving lives this summer, and a July high-level meeting between an array of top VA officials and several members of the Research Advisory Committee (RAC) on Gulf War Veterans' Illnesses.


The full relevant text from Secretary Shinseki's speech before the American Legion is as follows:


Five years from now, we intend to be the provider of choice for more of that larger population of 23.4 million Veterans—in insurance, in healthcare, in education, in home loans, in counseling, and in employment.

To achieve this kind of status with Veterans, we must make it easier for them to understand their entitlements and then make it much simpler for them to access their benefits and health care services.

Beyond the five years, we’re looking for new ways of thinking and acting. We are asking why, 40 years after Agent Orange was last used in Vietnam, this Secretary is still adjudicating claims for service-connected disabilities related to it. And why 20 years after Desert Storm, we are still debating the debilitating effects of whatever causes Gulf War illness. Left to our present processes, 20 or 40 years from now, some future secretary could be adjudicating service-connected disabilities from our ongoing conflicts. We must do better, and we will.

If you haven’t already heard, the Institute of Medicine recently released a new study on a possible link between Agent Orange and heart disease and Parkinson’s. We have this study under review now, and I assure you—we will get this right.

Any organization our size is bound to have occasional disappointments, and we have not been spared them in recent months. Many of these issues occurred in the past, but I take full responsibility for fixing them. Some of these disappointments resulted from someone cutting corners, while others were failures in leadership, behavior and professional ethics. And still others were systemic.

These issues will only be resolved when a sense of responsibility, accountability, and discipline is established throughout VA—from my office to the farthest reaches of our footprint. We are your advocates, and we have begun to retrain the workforce.

My remarks this morning comprise a seven-month progress report on the state of your Department of Veterans Affairs. I intend to do this again next year. Much more remains to be done. We need your continued support and assistance if we are to become the provider of choice.

My mission is to serve Veterans by increasing their access to our benefits and services, to provide them the highest quality of health care available, and to control costs to the best of my abilities. Doing so will make VA a model of good governance. Doing so will also keep faith with President Lincoln’s charge to care for those who have borne the battle and grant them the dignity and respect they deserve until they are laid to rest. That is my mission.

We look for your advice and support in all of these endeavors.


Change is coming...

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Thursday, August 27, 2009

Gulf War Deployment,Toxins Associated with Motor Speed, Attention Declines

Written by Lourdes Salvador, American Chronicle

(American Chronicle - August 26, 2009) - Toomey and colleagues -- researchers at the Boston Veterans Administration Healthcare System -- confirmed that Gulf War deployment is associated with subtle declines of motor speed and sustained attention as influenced by exposure to toxicants during deployment.

Toomey found that exposure to sarin gas released during the Khamisiyah destruction is correlated with long-term reduced motor speed in veterans that has not resolved after 10 years. Self-reported exposure to these toxicants is also significantly associated with attention deficits.

Ten years after the war, deployed veterans are still in poor health and perform significantly worse on cognitive tests than non-deployed veterans. Gulf War veterans complaints include:

  • Poor cognition
  • Slowed motor function
  • Memory Loss
  • Chronic Fatigue
  • Skin Rash
  • Hair Loss
  • Headache
  • Muscle pain
  • Gastrointestinal Disorders
  • Cardiovascular Changes
  • Chemical Sensitivity

These health alterations point to potential long-term, permanent impairment from toxicant exposure.

The symptoms of Gulf War veterans are analogous to a group of multi-system illnesses increasingly seen in the general population, notably: multiple chemical sensitivity (MCS), chronic fatigue syndrome (CFS), and fibromyalgia (FM). These illnesses all share a common pattern of initiation and, thus, they may share a common etiology (cause) in long-term, permanent impairment from toxic exposure.

Reference

Toomey R, Alpern R, Vasterling JJ, Baker DG, Reda DJ, Lyons MJ, Henderson WG, Kang HK, Eisen SA, Murphy FM. Neuropsychological functioning of U.S. Gulf War veterans 10 years after the war. J Int Neuropsychol Soc. 2009 Jul 29:1-13. [Epub ahead of print]
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Wednesday, August 26, 2009

Gulf War Illness Research Funding Shuffles -- Will ill Gulf War Veterans be among the Winners or the Losers?

Written by Anthony Hardie, 91outcomes

(91outcomes.blogspot.com - Wednesday, August 26, 2009) -- The U.S. Department of Veterans Affairs today announced that it has canceled the Gulf War Illness research contract being fulfilled by Dr. Robert Haley and his research team at the University of Texas-Southwestern in Dallas.


Several versions and aspects of the story have emerged.

In its press release, VA officials cite, "persistent noncompliance and numerous performance deficiencies," in the agency's determination to cancel the contract. VA reports that the funding won't be lose, but instead will be used for an ambitious round of Gulf War illness studies.

UT-Southwestern's press release however, states a strong objection "to VA's characterization of the facts," and says its personnel were taken by surprise and had been working in good faith to meet the VA's concerns.

VA officials' credibility is undermined by the VA's press release characterization of current Gulf War illness funding -- which has developed no treatments, understanding of the underlying etiology of Gulf War illness, and provided no improvements in the lives of ill Gulf War veterans -- as "substantial support."

VA's Gulf War research portfolio has in previous years been filled with the VA's entire ALS research agenda, but little or nothing on Gulf War Illness. VA's press release cites Gulf War illnesses research at $7 million in 2008 and $4.8 million so far in 2009. By comparison, in recent years, Congress has appropriated more than $600 million for PTSD and traumatic brain injury (TBI).

Additionally, in an ongoing series of Congressional hearings, existing VA and other federal research efforts have come under sharp criticism by veterans, scientists, and the Congressionally chartered Research Advisory Committee on Gulf War Veterans' Illnesses.

The VA press release gives no clues on why that the new Administration's VA officials are characterizing VA's longstanding failures on Gulf War illness as "substantial support".

Partisan Politics

The Associated Press story, written by Suzanne Gamboa, however, sheds some light on a troubling aspect of this emerging story.

Gamboa, who has written many objective stories over the years on Gulf War veterans' health issues, implies that partisan politics are at play in the decision.

In the AP story, she notes that the contract and its funding was originally secured by Republican U.S. Senator Kay Bailey Hutchison (R-Texas), while the contract's demise has been pushed by Democrat U.S. Senator Daniel Akaka (D-Hawaii). Partisan politics has been implicated in earlier press about this issue as well.

Ill Gulf War Veterans Lost in the Shuffle

None of the versions of this emerging story discuss why that Congress allowed the $75 million in funding in the first place -- because VA's research failures on Gulf War veterans' illnesses were widely recognized, unable to be resolved, and the solution was that funding was taken away from VA and provided to an outside entity to help ill Gulf War veterans.

And most significantly, not one of the press releases or stories mentions the 175,000 to 210,000 Gulf War veterans who remain ill long after their Gulf War service and who are depending upon the federal government to find solutions to help improve their health and lives.

What Lies Ahead?

The question now is this: Can the new Administration do a better job in leading VA to soon develop ways to improve Gulf War veterans' health and lives?

Only time will tell.

Meanwhile, between one-fourth and one-third of the remaining living Gulf War veterans -- of the 697,000 total who served in 1991 Gulf War -- are still waiting for help.



======================================

According to the Associated Press #1:

Written by Suzanne Gamboa, Associated Press

WASHINGTON (AP) — The Department of Veterans Affairs has canceled a $75 million, five-year research contract with a Texas medical center studying illnesses suffered by veterans of the 1990 Gulf War.

The VA says research into the illnesses remains a priority.

Senate Veterans Affairs Committee Chairman Daniel Akaka, a Democrat, has been pushing to end the sole-source contract with the University of Texas' medical center in Dallas.

Money for the contract was added to a 2005 spending bill by Republican Sen. Kay Bailey Hutchison when her party ran Congress.

Troops returned from the 1990 Persian Gulf War with chronic illnesses ranging from fatigue to Lou Gehrig's disease. Some have questioned whether soldiers' illnesses resulted from battle stress or exposures to toxic substances.

------------------------------------------------------
According to the Associated Press, #2:

Written by Linda Stewart Ball, Associated Press. AP writers Suzanne Gamboa in Washington, D.C., and Andre Coe in Dallas contributed to this report.

DALLAS — Citing persistent compliance and performance deficiencies, the U.S. Department of Veterans Affairs canceled a $75 million, five-year research contract with a Texas medical center studying illnesses suffered by veterans of the first Gulf War, officials announced Wednesday.
Senate Veterans Affairs Committee Chairman Daniel Akaka, a Democrat from Hawaii, has been pushing to end the sole-source contract with the University of Texas Southwestern Medical Center in Dallas. He could not be reached for comment.
The VA said research on the illnesses, however, remains a priority.
"As part of our commitment to this vital effort, we must make certain that our resources are used to support effective and productive research," Dr. Gerald M. Cross, VA's Acting Under Secretary for Health said in a statement.
Dr. Robert Haley, the University of Texas Southwestern Medical Center epidemiologist who has lead the research project, also could not be reached for comment.
But a University of Texas Southwestern spokesman called the VA's "unilateral decision" to cancel the contract surprising and regrettable.
"We strongly disagree with the VA's characterization of the facts related to our Gulf War research contract," said John Walls, assistant vice president for public affairs at UT Southwestern Medical Center. "We were surprised to learn of their action, especially since we have been working diligently and in good faith with the VA to resolve all areas of disagreement."
The VA listed several reasons for not renewing the contract, including UT Southwestern's failure to comply with contract terms and conditions.
The VA noted that its Office of Inspector General outlines the dispute in a July 15 report, which seemed to revolve around Haley's reluctance to give the VA the medical records of some who participated in the study. That report recommended that no further task orders be issued under the contract.
Wednesday's announcement came the same day the VA met with UT Southwestern staff to resolve some of the issues, said Tim Doke, vice president for communications, marketing and public affairs at the medical center.
Doke said UT Southwestern would like to convert its contract with the VA into a more traditional research grant, which he said was less complex.
"I think it is safe to say that we are going to continue to engage with them," Doke said.
Money for the UT Southwestern contract was added to a 2005 spending bill by Republican Sen. Kay Bailey Hutchison of Texas when the GOP had the majority in Congress.
"Southwestern has worked to comply with all the VA's contractual demands but the VA bureaucracy apparently did not reciprocate in good faith," Hutchison said in a statement. "The biggest losers are the thousands of affected Gulf War veterans who have fought the VA for years to recognize their illness as real."
Troops returned from the first Persian Gulf War with chronic illnesses ranging from fatigue to Lou Gehrig's disease. Some have questioned whether soldiers' illnesses resulted from battle stress or exposures to toxic substances.
Haley and UT Southwestern began researching Gulf War illness in 1994 at the request of Texas billionaire businessman Ross Perot, whose help was sought by about a dozen soldiers suffering from symptoms, including disabilities in their children.
A spokesman for Perot said the billionaire wouldn't comment on the contract cancellation.
Paul Sullivan, a Gulf War veteran who heads an advocacy group called Veterans Common Sense, said he wants the VA to start funding other research and treatments immediately. He also said the VA should use a new Waco facility that focuses on brain injury and post traumatic stress disorder, problems largely found in Iraq war veterans.
"We hope it can pick up Gulf War illness soon so there will be no lost time," Sullivan said. "We want to make sure Gulf War illness maintains a high profile and high priority."
An estimated 175,000 to 210,000 veterans of the first Gulf War suffer multiple symptoms that are considered Gulf War illnesses, according to VA research.

===========
According to UT-Southwestern:

DALLAS, Aug. 26 /PRNewswire-USNewswire/ -- UT Southwestern has issued the following statement in regard to today's news release by the Veterans Administration:

We regret the VA's unilateral decision to not renew the contract supporting vital research focused on veterans suffering from Gulf War syndrome being carried out by UT Southwestern investigators and their collaborators elsewhere.

We strongly disagree with the VA's characterization of the facts related to our Gulf War research contract. We were surprised to learn of their action, especially since we have been working diligently and in good faith with the VA to resolve all areas of disagreement.

We remain committed to performing research that improves the condition of those who have served our country.

This news release is available on our World Wide Web home page at http://www.blogger.com/www.utsouthwestern.edu/home/news/index.html

===========

According to the VA:

WASHINGTON – Citing persistent noncompliance and numerous performance deficiencies, the Department of Veterans Affairs (VA) will not exercise the third year of a five-year, $75 million contract with the University of Texas Southwestern Medical Center (UTSWMC) to perform research into Gulf War Veterans’ Illnesses (GWVI).

“Research into the illnesses suffered by Gulf War Veterans remains a priority for VA,” said Dr. Gerald M. Cross, VA’s Acting Under Secretary for Health. “As part of our commitment to this vital effort, we must make certain that our resources are used to support effective and productive research.”

VA listed several reasons for not exercising the contract option, including UTSWMC’s persistent and continuing noncompliance with contract terms and conditions and detailed documentation by the contracting officer of performance deficiencies. VA also noted that its Office of Inspector General documented severe performance deficiencies in a July 15 report and recommended that no further task orders be issued under the contract.

VA will meet with UTSWMC contract staff on today to provide guidance for completing work in progress and submitting adequate documentation to allow payment. UTSWMC will be allowed to fulfill task orders already in progress if it corrects all performance deficiencies. .

The decision not to continue the contract means VA’s research program will be able to redirect funds to support additional research into GWVI. In 2010, that research will include a genomic study to identify susceptibility factors and markers of GWVI; studies of similarities and differences with chronic fatigue syndrome and fibromyalgia; studies of new diagnostic tests; identification of sub-populations of ill Gulf War Veterans; and studies of potential new treatments.

The redirected funding for these new VA research initiatives will be in addition to the substantial support VA already provides for GWVI research--$7 million in 2008 and $4.8 million so far in 2009.

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CNN: VA to Apologize for Mistaken ALS Disease Notifications

Written by Ashley Hayes, CNN

(CNN) -- The Department of Veterans Affairs said Wednesday it will apologize to veterans who were mistakenly told they'd been diagnosed with a fatal neurological condition.


Letters were sent last week to 1,864 veterans and survivors, the VA said in a written statement. They were supposed to be sent to veterans with ALS -- also known as Lou Gehrig's disease -- to keep them apprised of expanding benefits eligibility.

"According to the records of the Department of Veterans Affairs (VA), you have a diagnosis of amyotrophic lateral sclerosis (ALS)," said the letter, according to the National Gulf War Resource Center. "This letter tells you about VA disability compensation benefits that may be available to you."

But some who received the letters, like Brent Casey, do not have ALS. Casey, a disabled Army veteran from the first Gulf War, told CNN that when he received the letter, he was "just completely beside myself. Just floored. Went into a complete and total meltdown. I couldn't speak, couldn't -- I guess I was, truthfully, speechless."

After hearing from veterans who received the letter but do not have ALS, the VA immediately began reviewing individual claims files for all the recipients to determine who received the letter by mistake, agency spokeswoman Katie Roberts said in the statement. "VA employees are personally contacting these individuals to ensure they understand the letter should not be confused with a medical diagnosis of ALS, explain why they mistakenly received the letter and express VA's sincere apologies for the distress caused by this unfortunate and regrettable error."

"It's not right for it to happen this way," Casey said. "Regardless if it was the case that I was diagnosed with ALS, that would be the worst possible way for an organization to let an individual know."

Upon receiving the letter, some veterans sought a second opinion outside the VA, according to veterans' service organizations, paying for doctors' consultations out of their own pockets. The VA said it will reimburse those veterans for the costs.

In addition, the VA said it is reviewing its notification process to make sure a similar error doesn't happen again.

The AmVets service organization is "encouraged" by the VA's response to the situation, and pleased to see they caught the error, said spokesman Ryan Gallucci.

================================
According to the VA:


STATEMENT:

Last September the Secretary of Veterans Affairs made amyotrophic lateral sclerosis (ALS) a presumptively compensable illness for all Veterans with 90 days or more of continuous active service in the military. As a result, the Department of Veterans Affairs (VA) can now pay disability compensation to Veterans with ALS. Their survivors are also eligible for VA benefits.


In an effort to provide Veterans this new and much-needed support, VA sent notification letters to Veterans with ALS advising them of their potential eligibility for disability compensation benefits. On August 13, 2009, VA sent outreach letters to 1,864 Veterans and survivors across the country. Unfortunately, VA made a coding error and a number of Veterans who should not have received this letter did. The Department is reviewing individual claims files for all the recipients of this letter to identify those who received it by mistake.

VA employees are calling Veterans and survivors to ensure that they understand the purpose of the letter, explain why they mistakenly received the letter, and express VA’s sincere apologies for the distress caused by this unfortunate and regrettable error.



Q & A:
 
Q: How many Veterans have been affected?
A: Approximately one third of the letters VA sent were miscoded.


Q: Will VA be issuing a formal apology?
A: Yes, the Department is calling all affected Veterans and will also be issuing them a formal letter of apology.


Q: Why did Veterans who do not have ALS get letters?
A: VA used data and information from its data base to identify Veterans diagnosed with ALS or who had filed a claim for ALS, but were not currently receiving disability compensation benefits for the condition. However, as a result of problems in the codes VA used to identify these Veterans, VA sent the letter to some Veterans who do not have ALS.

Q: What is VA doing to correct the mistake?
A: We are working to identify the specific problems that caused the misidentification of Veterans records. We will ensure any future data extracts for similar outreach purposes are properly formulated and independently validated to prevent these types of problems in the future.


Q: Will Veterans be reimbursed for medical expenses incurred?
A: VA will reimburse Veterans who incurred expenses for medical evaluations conducted as a result of receiving an erroneous notification.


Q: What will VA do to prevent this from happening again?
A: As a result of this incident, VA is creating a more rigorous process that includes thorough and careful screening of the data, comprehensive review and approval process that will include involvement from our stakeholders before release of notifications letters.
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Ill Gulf War and Other Injured Veterans Get Jobs in Unique Industry Program

According to Newsday:

Written by James Bernstein, columnist

(Newsday, August 26, 2009) -- While on patrol with his Army unit in Afghanistan, Jonathan Claywas hit by a rocket-propelled grenade, leaving him with serious head injuries and a broken back.

Deborah DeCicco served in Iraq during the first Persian Gulf war, breathing in the toxic fumes from oil wells Iraqi troops set on fire. DeCicco later developed breast cancer she said is attributable to the fumes.

Joe Fleming served in Iraq crouched in a Bradley Fighting vehicle. The 6-foot-7 Fleming later developed severe back problems.

They had difficulty finding civilian jobs in the current economy, but are now employed at Northrop Grumman Corp. in Bethpage under a unique program - Operation Impact - that first seeks out injured vets, and then finds jobs for them at the company.

"It's a reverse process," said Northrop Grumman HR manager Ada Palatanik. "We find the people and then we create the jobs."

Clay, 29, of Plainview, DeCicco, 47, of Oceanside, and Fleming, 25, of Massapequa, all work in technical or managerial jobs on a company project to build an unmanned Navy spy plane. In all, Northrop has hired 52 injured vets at its facilities around the country in the last few years.

Northrop Grumman spokesman Tom Henson said the program is just at its beginning. "We're just ramping up," Henson said.

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WRAL-TV: N.C. Gulf War Veteran Among those who Receive VA's Errant ALS Letter

Beau Minnick

Web Editor: Kathy Hanrahan

Former Army Sgt. Samuel Hargrove, of Henderson, remembers the feeling he got when he opened a letter on Sunday from The U.S. Department of Veterans Affairs. It was a notification that he had been diagnosed with Lou Gehrig's disease.

“It really felt like the weight of the world had fallen upon my soul,” Hargrove said. “I started crying and wondering why no one had ever told this to me before.”

Like some other Gulf War veterans, Hargrove, 42, has some neurological problems. He suffers from chronic fatigue, fibromyalgia and narcolepsy.

After talking with other veterans in a resource center and online, Hargrove discovered he was among a group of veterans who received the letters erroneously.

With all the other symptoms he has, now Hargrove questions whether he has ALS, too. He wants the VA to pay for a test.

“I don’t want to see anyone else go through this kind of suffering from a mistake again,” Hargrove said.

VA spokeswoman Katie Roberts said the agency will individually apologize to those veterans who received the letters in error.

The veterans also will receive an explanation about how "this unfortunate and regrettable error" occurred and reassurances that the letters do not confirm diagnoses of the fatal neurological disease, she said. Roberts did not say whether the agency has determined how the error occurred.

VA employees were still thumbing through case files, trying to determine exactly how many veterans mistakenly received letters intended to inform sufferers of ALS, or Lou Gehrig's disease, of benefits available to them or surviving spouses and children.

"We understand we made a mistake," Roberts said. "We had every good intention.”

Roberts said the VA mailed more than 1,800 letters last week and has been notified by fewer than 10 veterans who received the letters in error. However, a Gulf War veterans group that provides information, support and referrals about illnesses to military members estimates at least 1,200 veterans received the letters by mistake.

Denise Nichols, vice president of the National Gulf War Resource Center, said panicked veterans in at least a dozen states have contacted her group.

ALS is a rapidly progressive disease that attacks the nerve cells responsible for controlling voluntary muscles. It is usually fatal within five years.

Veterans like Hargrove and former Air Force reservist Gale Reid in Montgomery, Ala., were initially suspicious of the letters, but went through the pain of not knowing whether they had ALS.

Reid said she incurred about $3,000 worth of medical expenses securing a second opinion from a civilian doctor. Reid hopes the VA will pay for the tests, but Roberts said she had to check on any reimbursements.

Jim Bunker, president of the veterans group, said someone at the VA told him the mistake was caused by a coding error in which veterans with undiagnosed neurological disorders were inadvertently assigned the code for ALS. The VA uses more than 8,000 codes for various diseases and illnesses, he said.

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Monday, August 24, 2009

USA Today: Health scare sent to 1,800 veterans

(August 24, 2009) - More than 1,800 Gulf War veterans were sent letters from the Veterans Administration this month informing them that they had Lou Gehrig's disease — a fatal neurological disease.

But at least some of the letters — and the diagnoses — were a mistake.

Jim Bunker, president of the National Gulf War Resource Center, said VA officials told him the letters dated Aug. 12 were the result of a computer coding error that mistakenly labeled the veterans with amyotrophic lateral sclerosis, or ALS.

Katie Roberts, a spokeswoman for the VA, said the letters were simply to inform veterans with ALS of disability compensation available to them and were not intended to deliver a medical diagnosis of ALS.

Roberts said the administration has since been contacted by a "small number" of people who did not believe they had ALS. Veterans Administration officials are now reviewing all the cases, Roberts said.

For those who were sent the letters in error, Roberts said, VA officials are personally contacting the recipients to "express VA's sincere apologies for the distress caused by this unfortunate and regrettable error."

Bunker said the letters informed recipients that the ALS diagnosis made them 100% disabled, meaning they were entitled to about $2,700 a month, with additional money for children and spouses.

Although some may view that sought-after 100% designation as a welcome benefit, Bunker said, being diagnosed with a disease that generally kills people within five years far overshadowed any monetary gains.

"The vast majority saw it as bad," he said.

Brent Casey served as an Army medic in the 1991 Gulf War and suffers from post-traumatic stress disorder and chronic fatigue syndrome.

He has already been classified 100% disabled by the VA, but is working toward a master's degree in business in Louisville. He also volunteers at the local VA.

When Casey's mother called and read him the letter, the 41-year-old thought he had just been read a "death sentence."

"By volunteering at the VA, I've learned a lot of these illnesses. So I knew firsthand what that meant for me," Casey said. "I just had a total meltdown."

Casey learned that the letter was a mistake after making calls to the VA. But he now worries about the veterans who have received the letter and have yet to be contacted about the mistake.

"My concern is, what about the guy who's been on vacation, and he comes home to find this letter this evening?" Casey said. "We need to get the word out to these guys."

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Friday, August 21, 2009

VA Error Leads to ALS Notification Letters

Editor's Note:  The following correspondence has been circulating rapidly in the U.S. Gulf War community today.

The first is an email from disabled West Virginia Gulf War veteran Brent Casey, who is among about 1,200 veterans inadvertently notified by the VA's Huntington, West Virginia Regional Office that they have ALS -- a terminal neurodegenerative disorder -- when in fact they do not have the disease.

The second is an email issued by Veterans for Common Sense regarding the situation.

===============

From:
Brent Casey
To: undisclosed recipients
Sent: Friday, August 21, 2009 5:43 PM
Subject: Brent Casey diagnosed with ALS (Lou Gehrig’s Disease), by mistake ?? !!
I do not have ALS ! The first thing I would like to do, is say "THANK YOU" to my wonderful, wife, mother, aunt, and grandfather for their very powerful prayers ! As many of you know, I received a letter on Wednesday afternoon, 19 Aug. 2009, from the VA Regional Office in Huntington, WV; stating , "according to records of the Department of Veterans Affairs (VA), you have a diagnosis of amyotrophic lateral sclerosis (ALS) " The letter was signed by Joseph R. Beadoin, Veterans Service Center Manager.

As you can imagine, but I am not sure you can, I had the most horrific, incredible melt-down, nervous-breakdown, uncontrollable sobbing fit, I have ever had in my life ! I realized at that moment, I had been delivered a "DEATH NOTICE" by the Post Office ! Unfortunately for me, I had done extensive investigation of ALS and it's rapidly progressive, invariably fatal neurological symptoms/disease that attacks the nerve cells
(neurons) responsible for controlling voluntary muscles.. Some people say it is the most cruel disease that a person can contract because it slowly deteriorates the entire body, while the mind stays healthy. As I sobbed to my mother over the phone, "there is no cure, it is a DEATH SENTENCE, and I will be dead in 3-5 years !".

At this point, it was too late to call the VA Office, so, after an extremely, restless, sleepless, night, I called the Director's Office at the Huntington RO, at 8:00 a.m. Sharp !
I asked for and spoke to Mr. David Allen right away, and explained the letter and that I was incredibly upset, to say the least. He took some brief notes and asked to call me back shortly. At about 10:00 a.m., Mr Allen called back and stated that, he had put the VA into an EMERGENCY MODE OF OPERATION in order to locate my file and try to get to the bottom of the situation, but, after reading through my file, he had no explanation yet.

Later that afternoon, I spoke to Mr. Allen, once again. By this time, my mother had delivered the letter to the Regional Office, and left a copy for their examination. Mr. Allen had the letter and was looking at it but still had no explanation and was in obvious disbelief, himself.

About 2:00p.m., Mr Allen called me again. He stated that there was no way possible to express enough apology to make up for the extreme mental anguish that this had caused me, nor, the emotional trauma that I must have experienced, but he did apologize greatly. He
said, the whole thing is just a huge mix-up and an error on the part of the VA. He stated that in 2006, I had filed a claim for neurological damage due to Gulf War Illness and it was given the wrong diagnostic code, which has since been given to ALS. Subsequently, myself, along with about 1200 other Veterans, were sent this letter by mistake.

I told Mr. Allen, that I would try to find a way to understand how this could happen, but my biggest concern is for those other 1200 who are not having this conversation and getting this explanation ! My question is, "What about those guys?"

I spoke to my Primary Care doctor over the phone today after she had reviewed my entire record in detail, and she has assured me that there is no way possible I have ALS; I have a negative Brain Scan MRI, and a negative EEMG test.
PRAISE THE LORD ALMIGHTY !!!!!

I would like to ask those of you that read this, Please do whatever you can to get the word to those other 1200 veterans, and please write a letter to the Director of your local VA, to get assurance that these types of diseases or disorders are NOT delivered to the Veteran by the Post Office. Our VA System is better than that, and they know the appropriate way these type cases should be handled.

Respectful and Grateful,



Brent Casey
100% Disabled American Veteran



===============================

August 22, 2009
Dear VCS Members,
Yesterday, VA Central Office in Washington, DC was notified by Veterans for Common Sense about highlly unusual letters sent by the Veterans Benefits Administration (VBA) regional offices to an unknown number of veterans. The VA letters, dated within the past two weeks, advised some veterans they had ALS – amyotrophic lateral sclerosis, a serious disease that is often fatal - when the veteran did not have ALS. The letter caused enormous grief and distress among veterans, several of whom then contacted Veterans for Common Sense.
VA Central Office is now investigating the incident.
Several of my fellow Gulf War friends died from ALS, and this issue is near and dear to my heart. I fully understand the enormous anxiety the VA letters may have caused many veterans and their families.
The first thing VA must do is stop sending these mistaken letters. I hope VA apologizes for the letters sent to veterans who were not diagnosed with ALS. VA appears to have sent the letter with the good intent of notifying veterans about a new regulation expanding disability compensation benefits to veterans diagnosed with ALS. VA had previously denied most ALS claims until new scientific evidence linked ALS with military service, especially among Gulf War veterans. To learn more about VBA disability compensation for ALS, please read this September 23, 2009, VA press release.
I would ask that we direct our efforts toward working with VA so VA will stop sending more erroneous letters and resolve the situation. VA should apologize to veterans and their families. VA should try to figure out how this mistake happened so it does not happen again. Some veterans wrote and said they sought medical care and incurred expenses with private doctors – and VA should pay for those expenses apparently caused by VA’s mistaken letter. And finally, a medical professional with experience dealing with ALS patients should have read the letter before it went out, since the tone of the letter was rather stark, ominous, and inappropriate.
So let’s give VA a day or two to figure out how to resolve this issue. I’m asking for calm among veterans and advocates for a few days over the weekend so VA can investigate the situation and respond in the best interests of our veterans and their families clearly shaken by the letters.
Please share our VCS e-mail with our fellow veterans, especially Gulf War veterans and ALS mailing lists. VCS will post additional information as it become available. The text of the letter appears below.
Thank you, Paul.
Paul Sullivan
Executive Director
Veterans for Common Sense
Post Office Box 77304
Washington, DC 20013
(202) 558-4553
www.VeteransForCommonSense.org

===========================
Veterans Benefits Administration Letter
August 11, 2009
Department of Veterans Affairs
[Location Redacted]
[Name and Address of Veteran Redacted]
According to records of the Department of Veterans Affairs (VA), you have a diagnosis of amyotrophic lateral sclerosis (ALS). This letter tells you about VA disability compensation benefits that may be available to you.
Service-Connected Disability Compensation for ALS
VA published a new regulation, 38 CFR 3.318, that provides the development of ALS at any time after military discharge may establish service connection for that disease if the veteran had active, continuous service of 90 days or more. Because of your diagnosis of ALS, you may be entitled to compensation from VA. There are no provisions for payment of benefits prior to September 23, 2008, which is the effective date of the regulation.
How to Apply for Disability Compensation
You can apply online (http://vabenefits.vba.va.gov/vonapp) or submit VA Form 21-526, Veterans Application for Compensation and/or Pension, to your nearest VA regional office. The form is available from VA's website (http://www.va.gov/vaforms) or by calling the toll-free number below.
If you previously applied for compensation, you can reopen your claim by submitting a written request (a new application form is not required) to the VA regional office. Be sure to include your full name, VA file number, and/or your Social Security number.
For more information or to request an application, call toll-free, 1-800-827-1000. (The Telecommunications Device for the Deaf number is 1-800-829-4833.) You may also visit VA's website (http://www.va.gov/) or send an electronic inquiry (https://iris.va.gov/).
Sincerely,
[Name Redacted]
VETERANS SERVICE CENTER MANAGER

===========================


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Tuesday, August 18, 2009

GULF WAR EXPOSURES: Lewisite Smells Like Geraniums

World War II Gas Identification Poster, 1941-1945
World War II Lewisite Vesicant (Blister Agent) Gas Identification Poster, 1941-1945



Statement of Anthony Hardie, Gulf War Veteran, Madison, Wis. -- Testimony before the U.S. House of Representatives Committee on Veterans' Affairs Subcommittee on Oversight and Investigations, July 30, 2009

....Along with the lovely, captivating geranium fragrance was the pervasive odor that I thought was wet onions. I found this very odd at the time because there were no onions to be found in even the emptiest of the bunkers.

If I had been looking at a watch, I could have told you shortly thereafter what the time and date was when my severe, chronic cough began. Like many Gulf War veterans (and Iranian veterans of the Iran-Iraq War who preceded us), it has never subsided. For years, I believed that my black sputum that I coughed up for three months, and the never-ending cough that continued thereafter, was the result of the oil well fire smoke.

Years later, I was horrified to learn that what I smelled that day were the characteristic odors of Lewisite and Mustard, a classic mixture used heavily by the Iraqis during the Iran-Iraq war. Even still, I discounted that my severe respiratory illness that began very shortly thereafter could have been because of these blister agents, not knowing until more recently that while the damage is immediate, the symptoms of mustard agent exposure don’t show for as long as even 24 to 48 hours after exposure, and that the vapors I inhaled that day—by the fact that they were strong enough to be smelled—were also strong enough to do immediate and lasting damage to my entire respiratory tract that corresponds with my symptoms at the time and since.

After talking with my doctors, the soft, blackish chunks I coughed up at the end of the Gulf War, some as wide across as a dime or larger, were almost certainly not oil well fire residue, but instead soot-tinged lung tissue being sloughed off after being blistered by these Iraqi chemical warfare agents. And notably, because there were only two or three of us in those bunkers, with me in them the longest, and because none of us were well trained enough to ever recognize these characteristic odors, they were never reported—except to my family, as ironically I searched after the war in Arab shops for the uniquely fragrant, geranium-scented perfume to buy for my mother that I was certain the retreating Iraqi troops had been using so heavily that it had left its scent behind in those bunkers.

I have heard enough first-hand accounts from other Gulf War ground troops about coming across chemical mines, being hit with isolated chemical attacks, and more that I now firmly believe that the CIA and DOD has no basis for their long-held statements that Iraqi ground commanders never possessed or used chemical weapons during the war. The extent and impact of intelligence failures were widely discussed on and off the battlefield, and if there is further interest and a proper request to do so, I would be happy to provide more information in a closed setting on this issue.

Sadly for at least 175,000 of my fellow ill Gulf War veterans, VA’s limited scope of GWI research has not even begun to address the health outcomes associated with widespread chemical warfare agent exposures, let alone treatments, information, or advisements that might help improve our health and lives....


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http://www.celsias.com/article/wmds-on-our-doorstep/

Lewisite: Lewisite is a type of chemical warfare agent. This kind of agent is called a vesicant or blistering agent, because it causes blistering of the skin and mucous membranes on contact.

Lewisite is an oily, colorless liquid in its pure form and can appear amber to black in its impure form. Lewisite has an odor like geraniums. Lewisite contains arsenic, a poisonous element. Lewisite is also known by its military designation, “L.”

Signs and symptoms occur immediately following a lewisite exposure. Lewisite can have the following effects on specific parts of the body:

  • Skin: pain and irritation within seconds to minutes, redness within 15 to 30 minutes followed by blister formation within several hours. The blister begins as a small blister in the middle of the red areas and then expands to cover the entire reddened area of skin. The lesions (sores) from lewisite heal much faster than lesions caused by the other blistering agents, sulfur mustard and nitrogen mustards, and the discoloring of the skin that occurs later is much less noticeable.
  • Eyes: irritation, pain, swelling, and tearing may occur on contact.
  • Respiratory tract: runny nose, sneezing, hoarseness, bloody nose, sinus pain, shortness of breath, and cough
  • Digestive tract: diarrhea, nausea, and vomiting.
  • Cardiovascular: “Lewisite shock” or low blood pressure may occur
Mustard Gas:

How sulfur mustard works:

  • Adverse health effects caused by sulfur mustard depend on the amount people are exposed to, the route of exposure, and the length of time that people are exposed.
  • Sulfur mustard is a powerful irritant and blistering agent that damages the skin, eyes, and respiratory (breathing) tract.
  • It damages DNA, a vital component of cells in the body.
  • Sulfur mustard vapor is heavier than air, so it will settle in low-lying areas.
  • Immediate signs and symptoms of sulfur mustard exposure
  • Exposure to sulfur mustard is usually not fatal. When sulfur mustard was used during World War I, it killed fewer than 5% of the people who were exposed and got medical care.
  • People may not know right away that they have been exposed, because sulfur mustard often has no smell or has a smell that might not cause alarm.
  • Typically, signs and symptoms do not occur immediately. Depending on the severity of the exposure, symptoms may not occur for 2 to 24 hours. Some people are more sensitive to sulfur mustard than are other people, and may have symptoms sooner.
Sulfur mustard can have the following effects on specific parts of the body:
  • Skin: redness and itching of the skin may occur 2 to 48 hours after exposure and change eventually to yellow blistering of the skin.
  • Eyes: irritation, pain, swelling, and tearing may occur within 3 to12 hours of a mild to moderate exposure. A severe exposure may cause symptoms within 1 to 2 hours and may include the symptoms of a mild or moderate exposure plus light sensitivity, severe pain, or blindness (lasting up to 10 days).
  • Respiratory tract: runny nose, sneezing, hoarseness, bloody nose, sinus pain, shortness of breath, and cough within 12 to 24 hours of a mild exposure and within 2 to 4 hours of a severe exposure.
  • Digestive tract: abdominal pain, diarrhea, fever, nausea, and vomiting.



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Lessons Learned, Lessons Lost: The U.S. WWII Chemical Warfare Agent Sniff Kit

http://www.floridamemory.com/OnlineClassroom/FloridaWWII/images/sniff_2.jpg

Disabled Michigan Gulf War Veteran to Ride Across State

Written by Lisa Perkins, Traverse City, Mich. Record-Eagle

(TRAVERSE CITY, Mich. - August 17, 2009) -- Steve Buse is always up for a challenge.

This week the disabled veteran and artist will begin a 150-mile bicycle ride across the state with hopes that reaching a goal that once seemed unattainable will serve as an inspiration to others who share his circumstances.

The former world-class skier who suffers from degenerative arthritis and fibromyalgia, as well as disabilities resulting from injuries suffered while serving in the Persian Gulf War, credits a great deal of his ability to keep active to his association with Challenge Mountain in Boyne City.

"They got skis under my feet again, something that I thought would never happen," said Buse, who not only skis at Challenge Mountain, but volunteers for the facility that helps the physically impaired and mentally challenged achieve their maximum potential through outdoor therapeutic recreation.

"Seeing the smile on other skiers' faces, you can't pay for that. It chokes me up to see the positive results," Buse said.

Participants at Challenge Mountain have the opportunity to work one-on-one with instructors, using adaptive equipment, to get them out on the slopes during winter months or doing a variety of outdoor activities throughout the year.

"The Challenge Mountain people have helped me out so much that I wanted to do something to help let other people know how great they are," said Buse, who had originally hoped to walk the route that begins in Traverse City and takes him across the state, stopping at his mother's home in Ossineke and finally to his father's home in Alpena.

"I have been thinking about doing this for a couple of years, but my body is just tearing apart and walking wasn't going to be an option, so we came up with this idea to ride a bike," said Buse, who will leave from the corner of Front and Union streets during Friday Night Live festivities.

Taking the trip in small sections with days off to camp and rest, Buse is planning on spending two weeks to complete the ride.

"This is going to be sort of a vacation for me, but I wanted to make something good of it too, so if people find out more about Challenge Mountain because of me, all the better," Buse said.

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