Saturday, January 26, 2013

RAC Teleconference on Feb. 4th

The RAC's public meeting in Washington, DC was cancelled due to VA bungling travel arrangements -- again.  The half-day teleconference is being held instead.  The RAC's full public agenda has been postponed to its June meeting in Boston, which will mark a full year since VA last allowed the Committee to meet.



Research Advisory Committee on Gulf War Veterans’ Illnesses, Notice of Meeting

The Department of Veterans Affairs (VA) gives notice under the Federal Advisory
Committee Act, 5 U.S.C. App. 2, that the Research Advisory Committee on Gulf War
Veterans’ Illnesses will conduct a telephone conference call meeting from 12:30 p.m. to
5:15 p.m. on Monday, February 4, 2013, in Room 23 of the Office of Research and
Development (ORD), 131 M Street, NE, Washington, DC. The toll-free number for the
meeting is (800) 767-1750, and the access code is 44644#. The meeting is open to the

The purpose of the Committee is to provide advice and make recommendations
to the Secretary of Veterans Affairs on proposed research studies, research plans, and
research strategies relating to the health consequences of military service in the
Southwest Asia theater of operations during the Gulf War.
The Committee will discuss its annual report to the Secretary, a 2013 Committee
report, and updates on VA Gulf War research initiatives. The session will also include
discussion of other Committee business and activities.

A 30-minute period will be reserved at 4:45 p.m. for public comments.

Individuals who wish to address the Committee are invited to submit a 1-2 page
summary of their comments for inclusion in the official meeting record. Members of the
public may also submit written statements for the Committee’s review to Dr. Roberta
White by e-mail at

Any member of the public seeking additional information should contact Dr.
White, Scientific Director, at (617) 638-4620 or Dr. Victor Kalasinsky, Designated
Federal Officer, at (202) 443-5682 or by e-mail at

By Direction of the Secretary:
Vivian Drake
Committee Management Officer

Wednesday, January 23, 2013

DESERET NEWS: No single therapy for veterans' chronic illness, but the suffering is real, IOM says

SOURCE:  Deseret News

No single therapy for veterans' chronic illness, but the suffering is real, IOM sayst »

Published: Wednesday, Jan. 23 2013 9:37 a.m. MST

WASHINGTON, D.C. — A mysterious illness that has plagued nearly a third of veterans who served in the Gulf War is real, but not well understood, according to an Institute of Medicine report that says no simple treatment exists and customized care offers the greatest promise of relief.
The report, released Wednesday morning, calls on the Department of Veterans Affairs to reach out to soldiers who served in that and other conflicts in the Middle East to identify other cases, tailor care individually and conduct studies to see what works.
The panel said "chronic multisymptom illness,” the new name for what was once called Gulf War syndrome, has disrupted the lives of about one-third of veterans who served in that short-lived 1991 conflict. It's not known if their symptoms will eventually improve.
"The veterans who came home from the Gulf War suffer from a multiple array of long-term, medically unexplained symptoms that we have defined as chronic multisymptom illness," Dr. Bernard M. Rosof, chairman of the IOM panel that wrote the report and board chairman of Huntington Hospital in Huntington, N.Y., told the Deseret News. "It's a serious health condition and that's something we have to understand.
"It imposes an enormous burden of suffering — dysfunction in the working environment, dysfunction in the family setting and dysfunction socially," he said.
Iraq and Afghanistan?
The report said many soldiers returning from conflicts in Iraq and Afghanistan complain of similar symptoms. If it's shown that they, too, have CMI, it could mean many, many more veterans are affected; some 700,000 soldiers served in the Gulf War and as many as 250,000 exhibit CMI symptoms; by late 2011, 2.6 million Americans had served in Iraq and Afghanistan.
Existence of the illness has been questioned; the report says bluntly that it exists and must be treated, offering a series of recommendations on improving care. The attitude of doubt even within the VA system "must be changed," Rosof said. "Veterans feel that clinicians don't understand or believe their symptoms and they feel that they don't fully consider the whole person or explore their experience."
The study was ordered by Congress as part of a series on the Gulf War and health.
To be diagnosed with CMI, a soldier must have at least two symptoms across six categories that last at least six months. The categories include fatigue, mood and cognition, musculoskeletal, gastrointestinal, respiratory and neurologic symptoms. They may "overlap but are not fully captured by known syndromes" such as chronic fatigue, fibromyalgia or irritable bowel syndrome, the IOM panel said.
"Veterans who have CMI often have physical symptoms such as fatigue, joint and muscle pain and gastrointestinal symptoms, and cognitive symptoms such as memory difficulties," it said.

Find and treat
Panelists called upon the VA to use electronic medical records to find others who have symptoms, establish a team approach that also embraces outside expertise and explore a range of treatment options....

Health Day: U.S. Vets With Gulf War Syndrome Need Individualized Treatment: Report

SOURCE:  Health Day News

U.S. Vets With Gulf War Syndrome Need Individualized Treatment: Report

January 23, 2013
gulfsoldiers U.S. Vets With Gulf War Syndrome Need Individualized Treatment: Report
WEDNESDAY, Jan. 23 (HealthDay News) — A one-size-fits-all approach to treating U.S. veterans with Gulf War Syndrome does not work, and therapy needs to be tailored to meet each patient’s needs, according to a new Institute of Medicine report released Wednesday.
The document — written as part of the institute’s congressionally mandated Gulf War and Health series — evaluates the various treatments for Gulf War Syndrome in veterans of the 1991 conflict and recommends best approaches to managing their care.
The official name for Gulf War Syndrome is chronic multisystem illness (CMI), which is defined as having symptoms in at least two of six categories — fatigue, mood and cognition (thinking ability and memory), musculoskeletal, gastrointestinal, respiratory and neurologic — for at least six months.
The condition affects at least one-third of veterans of the 1991 Persian Gulf War. Similar symptoms have been reported in many military personnel who served in the more recent wars in Iraq and Afghanistan.
“Based on the voluminous evidence we reviewed, our committee cannot recommend using one universal therapy to manage the health of veterans with chronic multi-symptom illness, and we reject a one-size-fits-all treatment approach,” committee chairman Bernard Rosof, chairman of the board of directors at Huntington Hospital, in Huntington, N.Y., said in an institute news release. “Instead, we endorse individualized health care management plans as the best approach for treating this very real, highly diverse condition.”
The U.S. Department of Veterans Affairs should adopt a new strategy of creating “CMI champions” to help its health care providers better assist Gulf War Syndrome patients, who often have complex symptoms and needs, the report said.
To improve the government’s ability to identify veterans with Gulf War Syndrome, patients’ electronic medical records should prompt health care providers to ask patients about possible symptoms, the report recommended.
In addition, veterans should undergo a comprehensive health examination immediately after they leave active duty, and the results of these exams should be available to health care providers both within and outside the VA health system to ensure continuity of care.

USA Today: Report Says New Vets Showing Gulf War Illness Symptoms


Report: New vets showing Gulf War illness symptoms

This may be the first time symptoms are linked to current Iraq and Afghanistan veterans.

by Kelly Kennedy, USA TODAY

WASHINGTON -- Veterans of the wars in Iraq and Afghanistan may be suffering from the 20-year-old set of symptoms known as Gulf War Illness, according to a new report released Wednesday by the federal Institute of Medicine.
"Preliminary data suggest that (chronic multisymptom illness) is occurring in veterans of the Iraq and Afghanistan wars as well," the report says.
This may be the first time that the symptoms suffered by veterans of the 1991 Gulf War have been linked to veterans of the current wars, which started in 2001 and 2003, said Paul Rieckhoff, CEO of Iraq and Afghanistan Veterans of America.
It also means the Department of Veterans Affairs' definition of who qualifies for Gulf War veterans' benefits should include those who served in Afghanistan, said Paul Sullivan, a 1991 Gulf War veteran and founder of Veterans for Common Sense.
Because Wednesday's report associates the symptoms with deployment, Sullivan said, the VA "should expand the geographical definition of the current Gulf War to include the ongoing conflicts in Iraq and Afghanistan."
The researchers were to investigate treatments for Gulf War illness, including any existing research, to see what worked for veterans. Their research included traumatic brain injury, which is caused by blunt force to the head or proximity to an explosion; post-traumatic stress disorder, which must involve exposure to trauma; respiratory problems, fibromyalgia and chronic pain.
Chronic multisymptom illness was formerly called Gulf War Syndrome, the Institute of Medicine report said. It includes symptoms in at least two of six categories: fatigue, mood and cognition issues, musculoskeletal problems, gastrointestinal problems, respiratory difficulties and neurologic issues that last for at least six months.
About one-third of Gulf War veterans -- or 175,000 to 250,000 people -- have Gulf War illness.
The symptoms are too broad for any one treatment, the report said.
"Based on the voluminous evidence we reviewed, our committee cannot recommend using one universal therapy to manage the health of veterans with chronic multisymptom illness, and we reject a 'one size fits all' treatment approach," said committee chair Bernard M. Rosof, chairman of the board of directors at Huntington Hospital in Huntington, N.Y., in a statement. "Instead, we endorse individualized health care management plans as the best approach for treating this very real, highly diverse condition."
Researchers also said there may be no specific cause for the illness.
"Despite considerable efforts by researchers in the United States and elsewhere, there is no consensus among physicians, researchers and others as to the cause of CMI," the report states. "There is a growing belief that no specific causal factor or agent will be identified."
Anthony Hardie, a Gulf War veteran and advocate, disagreed. "They've lumped together so many ill people that it's impossible to come up with one treatment," Hardie said.
Other recent research has shown possible causes for some of the symptoms suffered by Gulf War illness.
A large-scale study done by Robert Haley, chief of epidemiology at the University of Texas Southwestern Medical Center in Dallas, showed veterans have damage to their autonomic nervous system caused by exposure to nerve agents after the U.S. Air Force bombed a chemical factory. Beatrice Golomb of the medical school at the University of California-San Diego tested the value of giving doses of the coenzyme Q10 to Gulf War veterans and found that "every single" veteran found improvement from 20 symptoms.
For current war veterans, scientists have connected chronic obstructive pulmonary disorder and bronchiolitis to exposures in Iraq and Afghanistan, including to garbage pits that burned as much as 240 tons of waste in an open pit a day, as well as to dust proved to be laden with bacteria and heavy metals.
Denise Nichols, also a Gulf War veteran and advocate, said she fears the report will add to Americans' belief that the symptoms are "all in our heads" -- even after numerous reports have come out saying the disease is physical and real.
"We need true treatment modalities," Nichols said, "that address the physical brain damage and other body organ damage from the exposures we endured."

Tuesday, January 22, 2013

Research Funding Available for Complementary and Alternative Medicine for Veterans, Military

( - The National Center for Complementary and Alternative Medicine (NCCAM) has issued a notice of research funding available for medical research on complementary approaches for symptom management and health in military or VA populations.  

According to the funding notice, "The research proposed should be focused on complementary approaches to pain and symptom management or improving health in U.S. military personnel, veterans and their families." 

NCCAM is part of the National Institutes of Health, U.S. Department of Health and Human Services. 

Research funding applications are due according to cycle: May 25 (but no earlier than Feb. 5), or September 25, 2013.  

The full text of the funding announcement is available from NCCAM at:

Special thanks to Dr. Roberta "Bobbie" White for identifying this research funding opportunity as potentially applicable to veterans afflicted by Gulf War Illness (GWI).

-Anthony Hardie,  

Agency: Lejeune water contaminated in 1953

Source:  Marine Corps Times

Agency: Lejeune water contaminated in 1953

By Allen Breed and Martha Waggoner - The Associated Press
Posted : Friday Jan 18, 2013 15:47:55 EST
RALEIGH, N.C. — Many more Marines and their relatives could be eligible for compensation for illnesses now that a federal agency determined that the water at North Carolina's Camp Lejeune was contaminated four years earlier than previously thought.
In a letter to the Department of Veterans Affairs, the Agency for Toxic Substances and Disease Registry said computer modeling shows that drinking water in the residential Hadnot Point area was unsafe for human consumption as far back as 1953. President Barack Obama signed a law last year granting health care and screening to Marines and their dependents on the base between 1957 and 1987.
"This is yet another piece of the puzzle that's coming together and slowly exposing the extent of the contamination at Camp Lejeune — and the Marine Corps' culpability and negligence," said Mike Partain, a Marine's son who was born at the southeast North Carolina base and who says he is one of at least 82 men diagnosed with breast cancer. "This is four years overdue."
The Marines were slow to react after groundwater sampling first showed contamination on the base in the early 1980s. Some drinking water wells were closed in 1984 and 1985, after further testing confirmed contamination from leaking fuel tanks and an off-base dry cleaner.
Health officials believe as many as 1 million people may have been exposed to tainted water. It's not clear how many Marines and family members will be affected by the expansion of the time line.
Partain estimates thousands because the Hadnot Point water system supplied the barracks where the majority of the Marines lived, as well as the Naval Hospital, unmarried officer barracks and some family housing areas. "It is by far the largest exposed population on the base," Partain said.
In a letter to Gen. Allison Hickey, VA undersecretary for benefits, the head of the toxic substance registry noted that a preliminary water modeling report showed that the period covered under the 2012 legislation didn't go back far enough, and that volatile organic compounds exceeded maximum contaminant levels at Hadnot Point as early as August 1953.
"I hope this information is useful as the Department of Veterans Affairs evaluates claims from veterans who served at USMC Camp Lejeune prior to the release of our full water modeling report in the spring," agency Director Christopher J. Portier wrote in the letter, dated Wednesday.
The letter was first released publicly during a meeting Thursday of the agency's community assistance panel at the disease registry headquarters in Atlanta. Former Marines and family members angrily questioned officials about why these studies have taken so long to complete.
During the meeting Thursday, a VA representative said that the approval rate for claims related to the water contamination has been about 25 percent so far. As of September, the VA had granted 17 breast cancer claims and denied 13 others; not all were males.
Marine Corps Capt. Kendra Motz said she got the disease registry letter Thursday and didn't have immediate comment. A VA spokesman said that agency was looking into the letter.
Documents show that underground storage tanks at Hadnot Point may have leaked more than 1 million gallons of fuel, a much bigger concern than the off-base dry cleaners, said Partain.
"This exposure had nothing to do with ABC cleaners and was the sole responsibility of the USMC," Partain said in an email.
Former Master Sgt. Jerry Ensminger singled out the case of a Florida Marine who is dying of a rare case of male breast cancer, and whose claim the VA recently denied.
"We've got veterans out there with life-ending diseases," said Ensminger, who blames the contamination for the leukemia that killed his 9-year-old daughter, Janey, in 1985. "These people are terminal, and they need this information."
That veteran, Tom Gervasi, 76, had his left breast removed in 2003. His service at Camp Lejeune ended six months before the cutoff date.
The VA has denied his cancer claim twice. He learned of the most recent rejection on Wednesday in a call from U.S. Sen. Marco Rubio's office.
Gervasi's doctors have given him at most three years to live. He would like his wife, Elaine, to have VA benefits when he is gone.
"Hopefully, this will work in my favor," Gervasi said in a telephone interview Friday from his home in Sarasota. "I don't know. It's sort of like fighting city hall, so to speak. When you're fighting the federal government, you're not always going to win. Very seldom you're going to win."
"It is my hope that VA will act quickly to amend their policy and review relevant disability claims that have been denied," U.S. Sen. Richard Burr said in a statement. "These men and women have been suffering through no fault of their own and we owe them the care they need without delay."
Ensminger told the group that a fellow Marine had succumbed the day before to kidney cancer, one of the diseases linked to the Lejeune contamination.
"I know you all deal with facts and figures; I deal with the personal aspect of this," he said. "You get to know these people. You cry with them, and every one of them that dies, you die a little bit each time with them. And it's just not fun."

Saturday, January 19, 2013

VA Again Blocks Gulf War Research Committee Meeting

( - The February 4-5, 2013 meeting of the Congressionally chartered Research Advisory Committee on Gulf War Veterans’ Illnesses (RAC) will not take place in Washington, DC as scheduled due to VA bureaucracy bungling the travel approval -- again.

The RAC’s February 2013 meeting was a meeting rescheduled from early December 2012, postponed due to VA’s inability to meet its own internal new VA travel requirements. 

VA has an extensive history of ignoring ill Gulf War veterans, RAC recommendations, and federal laws related to Gulf War veterans. 

Gulf War veterans were victorious in seeing the requirement for the public committee included in landmark 1998 Gulf War legislation.  However, the victory was only short lived as the January 1, 1999 statutory deadline to form the RAC came and went without VA implementation. 

Finally, more than three years late, VA Secretary Tony Principi appointed the first RAC members in 2002, including expert scientists and Gulf War veteran leaders.   The RAC held its first meeting in April of that year – fully public as has been the Committee’s tradition.

The RAC issued landmark reports in 2004 and 2008.  Yet, few of the RAC’s recommendations have ever been implemented by VA. 

In 2012, after an exhaustive, year-long, consensus-based process involving dozens of prominent Gulf War Illness researchers from inside and outside the VA, the RAC and the VA’s National Research Advisory Council (NRAC) completed a Gulf War Illness Research Strategic Plan, only to later see the report unilaterally whitewashed by VA, including removal of all mention of Gulf War Illness, including from the report’s title. 

An entire section of the strategic plan was dedicated to the development of an expanded case definition for Gulf War Illness, primarily of use by medical researchers.  However, even this standard, non-controversial development was ignored by VA when it was discovered by a watchful Gulf War veteran that VA was pursuing a sole-source contract with the Institute of Medicine (IOM) to perform a literature review to develop a new case definition – without any public announcement, discussion, or input and in complete contravention to the RAC-NRAC Strategic Plan. 

Following the RAC’s June 2012 meeting, the Committee issued a report highlighting many new and highly troubling VA failures with regards to Gulf War veterans.  The Committee, in approving its June 19, 2012 report, had a unanimous “No Confidence” finding with regards to VA’s handling of Gulf War Illness research.  Among the many findings is VA’s ongoing failure to follow a 2008 law directing VA to contract with the Institute of Medicine to determine the prevalence of Multiple Sclerosis (MS) in Gulf War and later veterans. 

Consistent with past performance, VA has yet to implement the recommendations called for in the RAC's June 19th report. 

And, the RAC has not been allowed by VA to meet since then.  

Despite some early signs of progress under Secretary Eric Shinseki, VA is clearly and yet again not serious about making good with disabled and suffering Gulf War veterans.  

In more than two decades since the 1991 Gulf War, VA has yet to implement a single proven effective treatment for Gulf War Illness.  

The next regular public RAC meeting remains scheduled for June 18-19, 2013, in Boston.   That is, of course, if VA can reorient itself to legitimacy, and refrain from further impeding the RAC continuing to fulfill its charter.  

The RAC website notes that it will hold a teleconference on February 4, expected to discuss committee matters.   

-Anthony Hardie,

Senate Hearing on Haley's Gulf War Plume Research ?

Source:  Dallas Morning News

Former Texas senator reaches across the aisle

 51 20
Bernie Sanders
Former Texas Republican Sen. Kay Bailey Hutchison has reached across the political aisle about as far as she can, praising Bernie Sanders, the only socialist in the U.S. Senate, for his support of veterans who returned from the 1990-1991 Persian Gulf War with mysterious ailments.
Hutchison made the comments at a tribute honoring her contributions to The Academy of Medicine, Engineering and Science of Texas, a nonprofit organization that works to further the state’s position as a “national research leader.” Hutchison is a co-founder and the honorary chair of the academy. The private event was held at the Perot Museum of Nature and Science Wednesday night.
Hutchison also lauded research by University of Texas-Southwestern Medical Center at Dallas epidemiologist Robert Haley, which determined that symptoms experienced by Gulf War veterans were caused by physical ailments and not stress. Haley endured considerable pushback from many in the medical community and the Department of Veterans Affairs.
Kay Bailey Hutchison
Hutchison was an early and outspoken supporter of Haley’s work. Hutchison also praised Sanders for his support of ailing Gulf War veterans, which dated back to his tenure as a U.S. representative.
Sanders now serves as chairman of the Senate Committee on Veterans’ Affairs. And Haley is the holder of the U.S. Armed Forces Veterans Distinguished Chair for Medical Research, Honoring America’s Gulf War Veterans at UT-Southwestern.
Hutchison said that Sanders wants Haley to testify about some recent findings, which have identified a plume containing toxic chemicals and nerve agents from bombed storage facilities in the Baghdad area as the apparent source of the veterans’ ailments.

Friday, January 18, 2013

IOM "Treatments" Committee Phone Briefing

The earliest presentations of this panel were highly flawed, inappropriately focusing on a long discredited theory of stress-as-cause for Gulf War veterans' physical Gulf War Illness symptoms. Not surprisingly, they were met with opposition from actual Gulf War Illness researchers and affected GWI patients.  Therefore, there is little confidence that the findings of this panel will be of legitimate value. 



Gulf War and Health, Volume 9: Treatment for Chronic Multisymptom Illness
Phone Briefing
Wednesday, January 23, 2013
1:00 PM EST

The Institute of Medicine of the National Academies is releasing the report Gulf War and Health, Volume 9: Treatment for Chronic Multisymptom Illness on Wednesday, January 23, 2013. The report will be available after 11:00 AM EST and can be accessed from the IOM website.

A phone briefing on the report will be held at 1:00 PM EST on January 23. If you are interested in participating, please contact Jonathan Schmelzer at or202-334-3759 to request the dial-in number and passcode.

Gulf War and Health, Volume 9: Treatment for Chronic Multisymptom Illness evaluates scientific and medical information regarding treatments for chronic multisymptom illness among Gulf War veterans and provides recommendations on how to best manage the health of veterans who have this condition. The report also provides recommendations on how to disseminate information on chronic multisymptom illness throughout the VA health-care system and on future research needs to resolve areas of continuing scientific uncertainty.  

Please forward this information to others who may be interested in participating in the briefing.

Friday, January 11, 2013

'This generation's Agent Orange:' New registry to tally, track burn pit illnesses among vets


'This generation's Agent Orange:' New registry to tally, track burn pit illnesses among vets
Mark Rankin / U.S. Army file A bulldozer dumps a load of trash into a burn pit just 300 yards from the runway at Bagram Airfield. A law signed by President Barack Obama will create a registry of U.S. service members who may have been sickened or killed by burn pits used throughout Iraq and Afghanistan.
An American flag dangles from the Torres home, the sign of a long battle won: a new law — signed Thursday by President Barack Obama — creating a registry of U.S. service members perhaps sickened or killed by burn pits used throughout Iraq and Afghanistan to destroy waste ranging from batteries to body parts.

But amid occasional smiles over the first step to formally identify the toxic effects of what’s called “this generation’s Agent Orange,” there were tears, too, in that house near Corpus Christi, Texas. Resident Le RoyTorres, 40, a former Army captain, is one of the ill veterans who will land on that list.

“It was a big victory. It justifies the need for health care. And now we know we’re not alone,” said Rosie Lopez-Torres, Le Roy’s wife, who said she “knocked on a lot of doors” in Congressional hallways to push the bill, which passed Dec. 30. The law requires the U.S. Department of Veterans Affairs to assemble the registry and report back to Congress. 

“But because of (our) finances, because my husband can’t work, today was also one of the toughest days for us,” Lopez-Torres said Wednesday. “Today, he was in tears. I’m not going to sugar coat that. How do I convince this once-strong, 6-foot-tall man who never missed a day of work: ‘You are the same man.’ But as the head of the household, he said: ‘You don’t understand what this has done to me.’ So it’s hard. But we still hang that flag on our porch. This has nothing to do with the military. This has to do with the contractors.”

After a lung biopsy, Le Roy Torres was diagnosed in 2010 with constrictive bronchiolitis, an irreversible disease that squeezes off airways. In 2007 and 2008, he was stationed in Balad, Iraq — home to what may have been largest military burn pit — the size of 10 football fields. Torres, for a time, performed his daily calisthenics near the dark plumes emitted by the smoldering crater.

Forced by breathing problems to later retire from his post-Army job as a highway patrolman, Torres is one of thousands of veterans who have filed more than 50 lawsuits against defense contractors hired to handle waste management in the war zones. The Motley Rice law firm is representing Torres and other veterans and their survivors in one of those class-action suits.

Attorneys allege the contractors — including KBR, Inc. and its former parent company, Halliburton — mismanaged the burns and exposed American troops to poison fumes. Last July, KBR’s lawyers argued that 55 such cases should be dismissed, in part because employees from the Houston-based company served “shoulder-to-shoulder” with service members, which should grant KBR the same immunity given to government entities and personnel, such as soldiers.

Service members, however, have complained for a decade that burn pits scattered across Iraq and Afghanistan were making them sick with cancers and other diseases, and were killing some young troops. In 2007, Army and Air Force health inspectors went to Balad and measured airborne, cancer-causing dioxins at 51 times the “acceptable levels.” They determined the cancer risk for people serving at the base for more than one year was eight times higher than normal. In 2008, the Military Times reported that single burn pit might have exposed tens of thousands of troops to dioxins and toxins such as arsenic.

What has been the health toll on U.S. troops? That’s what the new registry is designed to calculate, said Paul Rieckhoff, founder and chief executive officer of Iraq and Afghanistan Veterans of America, a group representing more than 200,000 former service members.

“This is something we’ve been fighting for, for years. It will be one database where doctors can go and look at the common symptoms. It also will help verify the problem quicker so vets can get the care they need,” said Rieckhoff, who served as a first lieutenant and infantry rifle platoon leader in Iraq during 2003 and 2004. He has experienced respiratory problems, although he cannot pinpoint the cause. “I don’t know too many people who weren’t exposed to a burn pit sometime during their deployment. They were constant.”

The smoking landfills typically contained damaged Humvees, unexploded ordnance, gas cans, mattresses, rocket pods, plastics, medical waste and amputated body parts, and they often were ignited by jet fuel.

The act does not mandate new VA benefits for veterans who chronically inhaled the vapors, Rieckhoff said. But the registry is expected to help private and government doctors document health conditions potentially related to burn pits, and perhaps hasten many diagnoses.

“It will help us get to the bottom of what’s causing so many vets to be sick,” he added. “We don’t know what toxic exposure is going to be (shown). It could be our generation’s Agent Orange (the defoliant used in Vietnam, later shown to be carcinogenic). But it’s important that you start with data. Data will be a critical part of identifying the problem and then creating good treatment. I’m glad we didn’t have to wait decades like the Vietnam veterans did around Agent Orange.”

Le Roy Torres, for example, has been given a 10 percent disability rating by the VA, said his wife, who calls that ruling “a joke” because “he served for 22 years, lost his childhood dreams, his career, just turned 40 and is unable to work because of his lung disease which also has affected his heart.” The Torres family is fighting the VA for a higher disability rating and, thus, higher compensation for his service-related symptoms. 

Before the lawsuits and the law, a handful of military families launched their own, online registries for service members, veterans and their survivors so they could report their symptoms and mark how closely they had served to one or several of the burn pits. 

As Le Roy Torres struggled harder to breathe, he and his wife launched The site lists 11 service members who descended from full health to terminal cancer after serving near a burn pit. 

That roll includes Air Force Sgt. Jessica Sweet, who died of acute myeloid leukemia (AML) in 2009 at age 30. She served in Afghanistan. Also listed is Army Staff Sgt. Steven Ochs, who died from AML in 2008 at age 32. He served in both Afghanistan and Iraq.

One of the registry's primary goals is to determine if there are tangible links between the deaths of service members like Sweet and Ochs and their exposure to the burn pits.

“How many have been affected? Every week I get an email from someone who has passed,” Rosie Lopez-Torres said. “We started our registry because we weren’t going to wait on the Department of Defense and VA. Our list of people who have self reported their data — whether it’s the loved one of a fallen hero who lost the battle with toxic exposure, or someone who is fighting the battle — is well over 1,000 people. They are from all over the country.

“The hardest thing for us is trying to figure out the finances day to day, and hearing (from the government) ‘just wait’ on your retirement check,” she added. “He’s hearing, ‘wait, wait, wait’ but he’s having to provide for his family. And he’s looking at his life and saying: “What am I going to do now?’”