A Hard Way to Die

Why hundreds of thousands of Vietnam vets with Agent Orange–related diseases have been made to suffer without VA health care.

By Phillip Longman

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Photo: Dan Koeck

G ary Nickel, 62, never liked to talk about his experiences in Vietnam. It’s only recently that his wife, Terry, has gotten some details out of him about why he’s started screaming in his sleep and locking his hands together as if he were choking someone. He’s finally told her, for example, about the time when, at the giant Bien Hoa Air Base, twenty miles northeast of Saigon, a plane landed and all the men jumped off puking. Nickel, whose job was to load and unload aircraft, discovered inside the rotting head of a U.S. soldier stuck on a post.

Gary told her, too, about his flashbacks to the many times during the Tet Offensive when he shook in bunkers while under mortar attack. After much objection about "not wanting to be pegged" with a mental illness, Gary at last relented to his wife’s insistence that he seek treatment for post-traumatic stress disorder, and now takes medication for it prescribed by a private physician. But that’s not his greatest medical need. Gary also suffers from Parkinson’s disease, a degenerative brain disorder that impairs motor and cognitive skills. Parkinson’s is most often found among the elderly, but Gary was only fifty-seven when he was first diagnosed, and he degenerated quickly.

Within two years of his diagnosis, he had to give up his job at the water treatment plant in Moorhead, Minnesota, and Terry had to give up her job as a nurse to stay with him around the clock. (The couple have no children.) Forced to live on a reduced income, including a $450-a-month Social Security disability check, they sold their home and bought a smaller, easier-to-navigate house furnished with a hospital bed, a trapeze, and special pillows to help with Gary’s bedsores. Terry is also responsible these days for looking after her eighty-year-old mother, who now lives with them.

This might be just another sad story of another working-class American family struggling with poor luck and bad health, except that it gets worse in ways that involve us all. Terry thought it very important that she get her husband enrolled at the VA Medical Center in nearby Fargo, North Dakota, which would provide, among other benefits, equipment like the ramps he needs and, importantly, respite care for herself. She knew that at their income level the couple wouldn’t meet the VA’s strict means test for admission. But she’d been reading about growing scientific evidence linking Parkinson’s disease to exposure to Agent Orange, a chemical defoliant widely used in Vietnam during the war. And, as it happens, the Bien Hoa base was and remains an Agent Orange "hot spot" in Vietnam—so much so that the U.S. government committed in 2008 to helping the Vietnamese government clean up the high levels of dioxins and other contaminants that still exist there. So in 2007 Terry applied for her husband to be admitted to the VA on the premise that his Parkinson’s was a "service-connected" illness.

The bureaucracy at the Fargo VA, however, was unmoved. Fourteen months after making their application, the Nickels received a single-spaced, two-and-a-quarter-page letter, dated July 7, 2008, that spelled out the VA’s rationale for rejecting Gary’s enrollment. The case officer acknowledged finding a study on Wikipedia that showed that people exposed to herbicides like Agent Orange have "a 70 percent greater incidence of PD than individuals not exposed," but then went on to suggest that Gary could have contracted PD at such a young age because of his "14 year history of smoking," or "occupational hazards" at the water plant. Terry says she assembled hundreds of pages of studies to rebut these claims—a tactic that has worked for a handful of Vietnam vets with Parkinson’s. But after a year of waiting for the verdict on their appeal she learned, with the help of local legislators, that the VA had simply closed their case. "In my eyes," Terry says, "it’s all political."

Though she lost her battle, Terry turned out to be right on the facts. This fall, the head of the VA, Eric K. Shinseki, acknowledged growing medical evidence linking Parkinson’s and two other common diseases to Agent Orange. Yet Gary Nickel and hundreds of thousands of other vets have been made to suffer for years without care thanks to a system that conditions benefits on scientific proof—proof that accumulates so slowly that many veterans will be dead and buried before they’re finally deemed eligible.


W hy can’t all Vietnam vets who were exposed to Agent Orange automatically get into the VA? Didn’t we take care of that problem years ago? Those of us beyond a certain age can remember the headlines, the angry demonstrations, the acrimonious hearings. About how the government long denied that exposure to Agent Orange could contribute to any ill-health except a case of chloracne, a disfiguring skin condition. About the gigantic class-action suit against Dow, Monsanto, and other manufacturers of Agent Orange, which left Vietnam veterans furious over its miniscule out-of-court settlement (an eventual $197 million paid to 52,000 vets over ten years, or about $3,800 each). About Reagan’s VA administrator, Robert Nimmo, who used an appearance on NBC’s Today show to call Vietnam veterans "a bunch of crybabies." About conservative think tanks that denounced as "junk science" any studies implicating Agent Orange as a cause of illness. And about how, finally, the federal government acknowledged the mounting scientific evidence linking Agent Orange to a variety of diseases and promised to help its victims.

On February 6, 1991, President H. W. Bush signed the Agent Orange Act into law. It seemed like a great victory to Vietnam vets at the time. The legislation codified that Vietnam veterans with any of three conditions known by then to be strongly associated with Agent Orange—chloracne, non-Hodgkin’s lymphoma, and soft-tissue sarcoma, with some exclusions—would automatically qualify for VA health care, no questions asked. And the bill called upon the Institute of Medicine (IOM) to continuously look for new evidence of Agent’s Orange’s long-term health effects. Backed by the great champion of veterans’ causes, the late Democratic Congressman G. V. "Sonny" Montgomery, as well as by then Republican Senator Arlen Specter, the bill promised to bring closure to what Bush called "this very complex and very divisive issue."

For a while, the legislation seemed to stand as an example of an overdue, but morally sound, workable policy based on science. In 1993, the IOM found a positive association between Agent Orange and Hodgkin’s and several other comparatively rare diseases, and the VA dutifully added these to the list of conditions presumed to be service connected for anyone who served in Vietnam. But as the years went by, the IOM and other researchers kept turning up more and more evidence of more and more complications from exposure to Agent Orange. A huge shocker, to most Vietnam vets and to federal budgeters, came in 2000 when the IOM reported a link between exposure to Agent Orange and type II diabetes—one of the most common diseases in America. It turns out to be substantially more common among Vietnam vets, and though it cost a bundle, the VA, under the waning Clinton administration, changed its rules so that all Vietnam vets with the condition are now presumed to have a service-related illness and therefore are eligible for VA care.

Then, though it attracted little attention in a country that had moved on from the war, the news kept getting worse. As Vietnam vets passed through their fifties and sixties, they experienced high rates and early onsets of more and more chronic diseases, like hypertension and cancers of the lung and prostate, for which Agent Orange turned out to be a risk factor. Science also began confirming many of their suspicions about their children’s health. In 2007, for example, the VA reported that 1,200 children of Vietnam veterans had spina bifida, a birth defect closely associated with a key ingredient of Agent Orange.

Then, in July of last year, a bombshell landed on Secretary Shinseki’s desk. In the most recent of a long series of reports entitled Veterans and Agent Orange, the IOM added Parkinson’s as well as ischemic heart disease and hairy cell leukemia to its list of conditions associated with Agent Orange exposure. In response, Shinseki ordered a rule change redefining these three conditions as service related for any Vietnam vet who has them. Presuming those rules make it through final review, people like Gary Nickel and some 200,000 other vets will soon have a much easier time claiming benefits.

But what about vets who suffer from conditions that have not yet been but may someday be linked to Agent Orange? For now, their only hope is to follow the route Gary Nickel took: try to prove that their case of the disease was caused by exposure to Agent Orange to the satisfaction of some overwhelmed VA service officer, who, as we’ve seen, may well try to settle the matter with some scratching around on Wikipedia.


S ome of the administrative problems have been there all along. For many veterans of the Vietnam era, just proving they were in the service, let alone victims of Agent Orange, can be an ordeal, due largely to a 1973 fire in St. Louis that destroyed many military service records. Today, if one picks up the membership magazine of the Vietnam Veterans of America (VVA), one finds pages of fine-print notices like this one:

Incident verification needed. National Records Center advises me that my documents were lost in a fire. Seeking anyone who served the 611th Trans. Bn., Vinh Long, 1969–70. Having health issues due to an accident that occurred during a recovery mission. Contact: Stan Floyd, americanairboats@ymail.com.

By law, the VA is supposed to help vets to find their service records and otherwise establish their eligibility. But David Houppert, who directs the VVA’s efforts to help its members navigate the VA bureaucracy, says that the government employees charged with the task of plowing through the dusty repositories of the military and the National Archives are often so overwhelmed with their caseloads that they make only perfunctory searches. As a result, a niche industry now exists that helps vets who can afford its fees to track down their records.

Beyond the challenge of establishing a service record is the often metaphysical problem of proving that one’s ill-health is related to military service. By their very nature, almost all chronic disorders are multicausal, influenced by factors such as genetics, diet, behavior, and environmental influences often all acting together. In Vietnam, the environment was saturated not just with Agent Orange but with a stew of other toxic chemicals whose effects could have been harmful in combination, though it would be extremely difficult to determine that scientifically. "Operation Flyswatter," for example, sprayed 1.76 million concentrated liters of the insecticide malathion over major bases and cities every nine days as part of efforts to prevent malaria. The same troops were given "Monday pills," weekly doses of the antimalarial drug chloroquine, which inhibits an enzyme the body uses to help metabolize neurotoxins. "Bottom line," says Alan B. Oates, who heads the VVA’s Agent Orange committee, "Vietnam veterans were taking prescribed medication that reduced their body’s ability to detoxify itself while being subjected to exposures of neurotoxins."

There has been little study of how Agent Orange may have interacted with other toxins common in the environment of war-era Vietnam, including DDT, paraquat, napalm, jet fuels, and many others. The VA could greatly advance scientific knowledge on the subject if it coded its vaunted electronic medical record system with information about where its patients served in the military. This would provide researchers with a powerful tool for determining whether and how much service in Vietnam correlates with various diseases that later show up in vets and their descendents. It could also help our understanding of Gulf War syndrome, and of ailments that may be experienced in the future by those now serving in Afghanistan and Iraq.

But we should also ask ourselves what, exactly, we would do with this information. Yes, it is good to know all we can about the epidemiology of disease, but there are limits to what we can know, and dangers in using science inappropriately. Consider, for example, that even if all involved had acted in perfect good faith, most of the long-term effects of Agent Orange and other toxic exposures could only have been discovered with the passage of time—time for Vietnam veterans to start having deformed children, and even longer for them to start coming down with Parkinson’s. And even then, all science can deliver are generalizations about large populations, not a determination of what caused any one person’s chronic illness.

And so we are left with huge numbers of Vietnam vets who may be enduring the effects of Agent Orange without care or compensation until their own suffering and death at last produces enough scientific data to nail down the causality. Normally, we want science to drive policy. But in this realm, waiting for science has meant waiting for an army to age and die, while also forcing sick veterans and their loved ones into the gears of a giant, overburdened, capricious bureaucracy—all for the purpose of trying to exclude the "undeserving."


I n retrospect, justice would have been far better served if we had just presumed all along that all Vietnam veterans deserved VA care—and it is still not too late to do that. Nor is it too late to do it for younger and older vets. As a practical matter, the majority of our veterans are or soon will be old enough to qualify for Medicare, so taxpayers are on the hook for the cost of their care anyway. Does it make sense to exclude them from the VA when it delivers care at a lower cost per patient and enjoys higher patient satisfaction than Medicare?

The VA also has excess capacity in many parts of the country and will soon have much, much more as the once-giant ranks of World War II and Korean War vets grow thin. Meanwhile, the VA provides, for those who can get in, very high-quality care, having become widely recognized over the last decade as a world leader in the use of information technology to ensure patient safety and to drive the development of coordinated, evidence-based protocols of care.

We need to open up the VA and grow it, extending eligibility not only to all vets but to their family members as well. This not only makes clinical sense—think of Terry Nickel and the millions of aging veterans’ wives like her—it also makes economic sense. So long as the VA remains one of, if not the most, cost-effective, scientifically driven, integrated health care delivery system in the country, the more patients it treats, the better.

Every vet should be able to use his or her insurance, including Medicare insurance, to receive treatment at the VA. Those who are indigent or who suffer from obvious war wounds should be given free care; others should contribute to the cost of their care as they are able. But any American who honorably served in the military should not find him- or herself locked out of the VA.

For far too many sick veterans, especially those who served in Vietnam, experiencing a rejection like Gary Nickel endured is taken as the final insult of an ungrateful nation. It’s a hard way to die. For the rest of us, joining their cause is not only morally right, but also advances the mission of true health reform by bringing us closer to establishing the principle that access to needed health care does not have to be earned and demonstrated, but is a right of citizenship.


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Phillip Longman is a senior research fellow at the New America Foundation and the author (with Ray Boshara) of The Next Progressive Era: A Blueprint for Broad Prosperity.

 
 
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