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Government waits for proof - sometimes for decades - before caring for sick veterans

Published January 15, 2010 11:30 am

Health care » The VA requires former service members to prove an illness was caused by military service.
This is an archived article that was published on sltrib.com in 2010, and information in the article may be outdated. It is provided only for personal research purposes and may not be reprinted.

Editor's note: First in a three-part series.

In Vietnam, Jim Ogden flew through clouds of Agent Orange. In Desert Storm, he hovered past burning oil fields. During Operation Iraqi Freedom, he worked near a thick black plume of burning plastic, metals, chemicals and medical waste.

Along the way he took injection after injection and swallowed pill after pill. He breathed in herbicides and pesticides. And he never questioned whether all of those drugs, toxins and poisons might someday do him harm.

Not until he lost his eyesight.

Now the former Marine and master helicopter mechanic can't help but wonder what, if anything, was to blame.

Though often in unintended and unexpected ways, military service has sickened generations of U.S. service members. But the only way for veterans to ensure medical care and compensation from the Department of Veterans Affairs is to prove that their illnesses are "service-connected." But the complexity of linking myriad mysterious ailments to military service -- and the budgetary burden of caring for millions of sick and dying veterans -- limits the number of veterans that the VA can help.

Thirty-five years after the end of the Vietnam War, the VA is still slowly adding to the list of conditions recognized as related to Agent Orange exposure. And nearly 20 years after the first U.S. war in Iraq, the VA still doesn't recognize Gulf War Illness as a diagnosis worthy of care or compensation -- even as a federal commission has determined the condition is real and affects tens of thousands of veterans.

That's to say nothing of veterans, like Ogden, who don't know how they got sick.

Meanwhile, military and political leaders have failed to heed lessons from past wars that could help identify mysterious illnesses.

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'Not like this' » The view from Ogden's East Millcreek home is a stunning panorama of the Salt Lake Valley, but the Marine Corps veteran's favorite room is in the basement. Across the walls of a long den is a virtual biography of more than four decades of service in the Marines and as a civilian Black Hawk helicopter mechanic for the Army. The photographs and commendations begin in Vietnam, where he was a crew chief on a CH-53 transport helicopter in 1967; and end in Iraq, where he worked for Sikorsky Aircraft in 2004. In all of those years, he never called in sick.

A few months after his return from Iraq, Ogden suddenly began having trouble seeing out of his left eye. A few months after that, he awoke unable to see anything out of the other eye. Soon he was completely blind in his right eye and nearly so in the left.

"I'd always had good eyesight," Ogden said. "And then, all of the sudden, I didn't. I can't read a magazine. I can't use a computer. I can't put a nail in the wall."

Doctors told Ogden that he had suffered a series of optic nerve strokes. There was no cure. His career was over. He'd been planning to retire, "but not like this."

A year later, Ogden was diagnosed with frontotemporal dementia, a disease in which the areas of the brain associated with personality, behavior and language begin to shrink. Later, his doctors warned, he might become socially inappropriate, impulsive or emotionally blunted. Ultimately, they said, he may lose the ability to use and understand language.

The diagnoses were terrifyingly specific; the causes were maddeningly unclear. No one could tell Ogden what had gone wrong. But in between medical appointments, unable to do many of the activities he had planned for his retirement, the 67-year-old man had a lot of time for speculation.

Perhaps it was the Agent Orange, a toxic defoliant used by the U.S. military to destroy enemy jungle hideaways in Vietnam, linked to more than a dozen diseases and suspected of contributing to dozens more. Or maybe it was the bromide pills he took during his first trip to Kuwait in the early 1990s. The tablets were supposed to help increase survival during a chemical weapons attack, but are suspected of contributing to a slew of conditions known as Gulf War Illness.

Or possibly it was the putrid fumes and thick black smoke that wafted over the largest U.S. military base in Iraq from a 10-acre trash heap that was set ablaze in 2003 and, in subsequent years, burned all manner of toxic garbage. Some veterans and their families believe the Balad Air Base burn pit -- and similar operations scattered throughout Iraq and Afghanistan -- are to blame for numerous respiratory, neurological and cancerous conditions.

"It could be any of that or it could be nothing at all," Ogden conceded. "I don't think there is anyone out there who has the answers."

Because he can't prove that his illness is connected to his service, Ogden doesn't qualify for VA care. "We're fortunate that we have other means," said his wife, Kathy. "But we've tried to find someone from the VA who might be interested in looking at him, just to see if there's anything they can learn about him that could help other people. No one is interested."

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'That's just not in my doctor book' » A teetering stack of medical journals sits on Larry Meyer's desk at the George E. Wahlen Department of Veterans Affairs Medical Center in Salt Lake City. The pile gets taller each week, and although Meyer fights to keep up, only the bottom third of the magazines in the stack have broken bindings.

As the hospital's chief of research, Meyer tries to link symptoms to diseases and diseases to causes. Most of the time, he can diagnose on the spot. But he can't always tell his patients why they are sick -- at least not with the specificity they need to prove their ailment is service-related.

"It is with great frequency that I am humbled," Meyer said. "There are times when I must say, 'That's just not in my doctor book.' "

One way to explain the challenge: melanoma.

"I've seen a lot of really horrible cases of skin cancer from guys who spent years on the deck of an aircraft carrier during World War II," Meyer said.

Skin cancer is relatively easy to diagnose. But while it's obvious that the risk of developing it would be greater for those who served -- often without so much as a shirt on their back -- in the middle of the South Pacific, Meyer can't draw a direct link.

"Skin cancer takes decades to develop and it is the result of accumulative exposure," he said, noting that he's beginning to see similar conditions from veteran sailors from the wars in Korea and Vietnam. "How much of any one person's exposure was a result of their time in the military? That, I cannot say."

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'Keep fighting' » James Bunker left Iraq in a fit of uncontrollable convulsions. No one could say what had gone wrong, but doctors suspected the Army artillery officer may have been exposed to a small amount of nerve agent when his division destroyed a large ammunition depot during Operation Desert Storm.

Over time, Bunker lost the use of his hands, arms and legs. Within a year of being sent home, he was discharged.

"The Army told me the VA would help me," the former soldier told the U.S. House of Representatives Subcommittee on National Security in 2004. "The VA said it was all in my head."

Enraged and impassioned by his own experiences, the 50-year-old Kansas man now battles bureaucrats and politicians on behalf of other Gulf War vets, tens of thousands of whom returned from the Middle East suffering from chronic fatigue, heightened chemical sensitivity, skeletal pain, skin rashes and other medical conditions that physicians were unable to attribute to a single cause.

For years, the government was reluctant to respond, noting that scientific studies had yet to find a cause for the strange syndrome. And without a cause, VA officials could do little but deny the war fighters' claims. Five years after the Gulf War, the Government Accountability Office determined that of the 7,845 undiagnosed claims made by Gulf War vets, the VA had approved just 392 for compensation or medical help.

Last year, Bunker and other veterans advocates scored a big win: A federal panel of medical experts agreed that Gulf War Illness is real and affects at least a quarter of the 700,000 veterans who served in the 1990-91 conflict. But the VA has said only that it promises to "review and respond to the committee's recommendations in the near future."

Eighteen years after the war's end, Bunker hasn't achieved one of his main goals: The government still doesn't recognize Gulf War Illness as a compensation-worthy diagnosis. Instead, it is up to sick veterans to establish that each symptom is related to their wartime service.

Bunker tells fellow veterans to "keep fighting," no matter how much paperwork they must file or how many times their claims are denied.

Federal law and administrative policy often position Mark Bilosz on the opposite side of that fight, but the director of the VA's regional office in Salt Lake City offers the same advice.

"If you're a veteran and you've got something wrong with you and you've got any inkling that it could be related to military service, I always say to file a claim," said Bilosz, whose first job with the VA was reviewing veterans' claims for compensation.

The VA might deny the claim initially, Bilosz said, but ultimately -- perhaps years down the road -- a connection might be made between a disease and its cause. Prostate cancer, for instance. Today any Vietnam veteran who suffers from that disease is entitled to VA care and compensation because the ailment has been connected to Agent Orange exposure. "But 15 years ago it wasn't," Bilosz said. "It would have been denied back then."

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'We don't know what we don't know' » When military health officials ultimately conceded a need to better study the potential existence of Gulf War Illness, there was one major obstacle: The Defense Department had no way to determine exactly where nearly 700,000 military men and women served.

"Up to that point in time, electronic databases only captured the country that individuals were deployed to," said Craig Postlewaite, the U.S. military's senior health protection official. That left "a huge gap," Postlewaite said. And that made it difficult, if not impossible, to connect environmental exposures to specific service members, Postlewaite said.

To remedy the situation, military leaders ordered a record-by-record accounting of the whereabouts of every military member. The effort began in 1996, continued for several years and cost several million dollars.

But when the United States went back to battle -- in the same nation -- in 2003, it still didn't have a tracking process in place. It wasn't until 2006 that the military implemented a tracking system adequate for epidemiological studies, Postlewaite said, and that system wasn't fully functional until 2009.

Rep. Tim Bishop, D-N.Y., is appalled. He's planning legislation to fill the gap -- essentially duplicating the record-by-record examination that took place in the 1990s. But even if Bishop's proposed bill becomes law, it may not lead to clear answers about why some veterans got sick.

Those answers simply might not exist, said Michael Battistone, a rheumatologist in the VA Salt Lake City health care system.

"All of us try to make sense of what goes on around us and within us," he said. "When something happens, we want to know why."

Battistone said ailments suffered by veterans could be the result of an exposure to one toxin or the convergence of many. Sorting through all the possibilities -- for millions of people, each with different genetic susceptibilities -- might not be feasible, he said.

But Battistone, whose perspectives on health care are colored by his experiences as the son of an Adventist minister, wonders whether that should really matter.

"How can we look these returning veterans in the eyes and when we say 'Thank you,' have that mean something more?" asked Battistone, who grew up listening to recordings of U.S. Senate Chaplain Peter Marshall, who extolled his followers to live up to the sacrifices made on their behalf. "How can we live in such a way that our actions and our character are worthy of the sacrifices they have made?"

Perhaps, he said, humility is a start.

"Maybe we just need to be able to say, 'We don't know what we don't know, but we will care for you regardless.' "

If that is the ideal, this nation has a long way to go. The VA spent nearly $48 billion on medical care for about 5.5 million veterans last year.

About 18 million veterans were left to their own devices.

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No guarantees of care

America's veterans are not automatically entitled to free health care from the Department of Veterans Affairs.

Under eligibility reform in 1996, the VA provides hospital care and medical services to veterans with disabilities that can be linked to their military service. Care may be provided to other veterans, but they or their insurers may need to pay for it.

And the rules make it clear that the extent of care provided to all veterans hinges on how much funding is provided by Congress to the VA.