GREAT BARRINGTON>> When Pete Naylor was diagnosed with esophageal cancer early last year, he and his wife, Kate, leapt into action to make sure the government he had fought for in Vietnam would provide for his treatment — and, in the case of his death, for his family.
"Pete was going to beat this thing," Kate said. "But he wanted us to be protected just in case."
The disease moved quickly. Pete Naylor died on April 11, 2015, just three months after he was diagnosed.
For his wife and two daughters, Meghan and Erin, there's no question that the cancer was caused by his service in Vietnam. Now, they need to convince the Veterans Administration.
It's no small feat, given the VA's reluctance to officially acknowledge a tie between esophageal cancer and the Vietnam-era defoliant Agent Orange. The link has been the subject of scientific studies, litigation and political legislation for decades.
Kate has been fighting to receive death benefits for over a year.
"This is not just for my family," she told the Eagle recently in her kitchen, beside the brick façade her husband built surrounding the stove. "This is about the principle."
Agent Orange, a potent herbicide that kills leaves and foliage on bushes and trees, was used by the U.S. military during the Vietnam War to take away cover from the North Vietnamese. The defoliant was sprayed across approximately 12 percent of the land in Vietnam.
The health effects of the chemical are well documented; the VA today recognizes 14 diseases with direct links to Agent Orange. But esophageal cancer is not on that list.
A soldier's experience
Pete Naylor was born in Long Beach, N.Y., on March 18, 1947. The second oldest of 13 children, he moved to the Berkshires in 1960. He found school difficult in the area and went to the Cardinal Farley military academy in Rhinebeck, N.Y., starting in 1961.
In July 1968, Pete joined the Army, serving until March 19, 1971. During his service, he spent 11 months in Vietnam as a helicopter crew chief. He met Kate Kane in 1973 after he returned to the Berkshires. They married on Oct. 4, 1975.
Pete was a stonemason by trade, retiring in 2008, though he would continue projects around the house for years. In October 2014, he began to feel unwell.
The disease moved quicker than the family expected. He had trouble eating and had to have food pureed. Within a couple of weeks he was using a feeding tube. The family knew the cancer had spread to his bones.
"It was Stage 4 immediately." Kate said.
The couple went to Dana Farber in Boston to see what could be done. Surgery was out, the doctors said, because the cancer had metastasized. Chemotherapy was the only option.
On April 2, after being met with silence from the VA on their claim, the Naylors asked U.S. Rep. Richard Neal, D-Springfield, for help.
Neal replied on April 6, 2015, that he was looking into the matter, but Kate has not heard back. Requests for comment from Neal's office were not returned.
Pete was admitted into Berkshire Medical Center on April 4, 2015; he died a week later.
"We had time. We talked," Kate said. "We said goodbye."
A month later, on May 5, Kate filed for death pension and accrued benefits relating to the cancer.
On June 9, 2015, the VA denied the Naylors' claims for both accrued benefits and service connection related to the cancer. It cited a lack of evidence tying the disease to Agent Orange.
"The secretary [of the VA] has determined that there is no positive association between herbicide exposure and esophageal cancer," the decision read. "The evidence does not equal or outweigh the evidence against association."
There was no ambivalence in the analysis from Pete Naylor's oncologist at BMC, Dr. Michael DeLeo.
DeLeo's examinations show an otherwise healthy 67-year-old being ravaged by an aggressive cancer of the esophagus. The diagnosis took pains to point out that Pete looked younger than his age and was in excellent health.
The oncologist identified three risk factors he could see for the disease: smoking, alcohol use and Agent Orange. Pete Naylor quit his mild habit of smoking over 25 years before diagnosis and rarely drank alcohol. That only left one likely culprit, the doctor said: exposure to Agent Orange.
DeLeo made that link directly in his postmortem statement provided on April 25, 2015.
"It is my medical oncology opinion that advanced aggressive squamous cell carcinoma esophagus was directly related to Agent Orange exposure, given lack of other significant risk factors noted," DeLeo wrote.
The oncologist's medical opinion was dismissed in the June 9 denial from the VA, which argued that legal precedent allowed the administration to disregard the doctor's opinion when weighed against the "collective view of experts" that there is no link between Agent Orange and esophageal cancer.
The VA did not respond to requests for comment.
A lawyer who represents veterans says based on the government's own standards, the decision should tilt the decision toward the Naylors.
"The VA uses National Academies of Sciences, Engineering, and Medicine Health and Medicine Division standards to determine if there are links between diseases and Agent Orange," said Adam Luck, a Texas-based attorney whose law firm, Glover & Luck, has represented families denied benefits after their loved ones die of service-related diseases.
Still, when it comes to esophageal cancer, the record is mixed.
On the one hand, Luck said, a connection between the disease and Agent Orange is hard to definitively prove. The sample size, exposure data, and controls for scientific study are complicated by the cancer's aggression and lethality. It's simply not realistic to look at the available information and draw any kind of conclusion.
But on the other hand, that lack of definitive conclusions doesn't mean there's no connection. In fact, data suggests there may indeed be a link between the defoliant and the disease. In the most recent report on the links between Agent Orange and diseases from 2014, the academies found that there was some indication that the defoliant caused cancer. But the report stopped short of making a definite connection due to a lack of overall evidence.
Luck says that leaves the probability for the VA's purposes at "50/50." In that case, he said, the tie goes to the veteran — or it should.
Kate Naylor received benefits for Pete's funeral on June 11, 2015. The VA gave some money to the family for funeral and cemetery costs. Six days later, the VA returned a final payment for the month of April's disability benefits for Pete's tinnitus and Agent Orange-related diabetes mellitus. It was cold comfort, Kate said.
So she filed an appeal with the VA.
That appeal is ongoing. Thus far Kate has only heard that the claim is being processed. She received the most recent update on July 28.
"It's the same old thing," she said. "Jumping through hoops."
Waiting for the VA
Local Vietnam veteran activist John Hardin has seen how slow the VA can be to process. He fought for years for his disability benefits due to service and is still in litigation with the VA over his level of compensation. Hardin said the VA will avoid paying for Agent Orange related illnesses if it can.
"The minute they hear something might not be related to Agent Orange, they cling to that," he said. "If your disease isn't on their list, you're in for a fight."
Rick Francis, a veterans activist from Washington state, agreed. In the early 1980s, Francis started the nonprofit The Blackdog Foundation in response to what he called poor outreach to and treatment of veterans by the VA. It provides post-traumatic stress treatment and domestic abuse prevention services to veterans and their families.
"When you give just enough funding to cover a number so small, when the need is vast, you never have healing," Francis said. "You have a demand for expedience, with an expectation of perfection, that never gets past the blame game."
But there is reason to hope that the VA might provide some healing for Kate Naylor. That hope comes from a former congressman from Wisconsin.
In 2009, U.S. Rep. Steve Kagen sponsored the Thomas G. Schubert Agent Orange Fairness Act. The bill, which was co-sponsored by then-U.S. Rep. Barney Frank, D-Mass., would have added esophageal cancer to the list of Agent Orange-related diseases eligible for compensation.
Unfortunately, the bill never made it to the floor. Kagen told The Eagle this was due to a rule the Democratic majority had instituted that mandated any bill that came before the House floor have secured funding. The bill would have cost $2.1 billion, Kagen said. He and Frank were unable to secure promises of funding. Frank did not return calls seeking comment.
Kagen has been an advocate for veterans in his district and nationally for years. Even now, six years removed from his congressional career, the impulse to help victims of Agent Orange still exists.
"There is no doubt in my mind that exposure to Agent Orange is bad for our health and that one consequence is development of esophageal carcinoma," Kagen said.
When veterans' families are faced with denial of death benefits for esophageal cancer that developed as a result of Agent Orange, he continued, there's a simple solution. The family needs to have the doctor amend the death certificate to read that the cause of death was esophageal cancer caused by Agent Orange.
One of Kagen's constituents did just that in 2008 and won her appeal against the VA. In the decision, the findings of fact clearly state that the amended death certificate was a factor in the decision to award benefits.
Kate is moving forward with amending Pete's death certificate to state that Agent Orange caused the cancer. She is waiting for DeLeo's office to reply to her request that he provide a notarized letter to the Pittsfield City Clerk announcing he wishes to amend the death certificate.
"Fingers crossed," she said.
Fighting for veterans
Kate hopes that her story will encourage other veterans and their families to fight for their compensation under the law.
"It took Pete a long time to embrace his status as a veteran," she said, sitting under a photo of her husband taken during a fishing trip.
Once he did accept his status, though, he embraced it fully. For Pete, she said, taking responsibility for his veterans status and other veterans in the community was part of his DNA.
Pete saw himself as a resource for young men in the area returning from Iraq and Afghanistan, Kate said. He would welcome them into their family home, she said, and let them know they had someone who understood where they were coming from. He would also encourage them to apply for benefits from the VA.
"That's why this fight isn't just for us," she said. "Other veterans should be encouraged to apply for their compensation, too."