This story was co-published with The Virginian-Pilot.
Pegi Scarlett had just returned from her husband’s grave this past Memorial Day — the first since his death — when, on a whim, she decided to search online whether other Vietnam vets had died of the same aggressive brain cancer.
With a few keystrokes, she found a Facebook group with a couple hundred widows like herself, whose veteran husbands had died of glioblastoma. She also found an intriguing article: A widow in Missouri had fought for almost eight years before convincing the U.S. Department of Veterans Affairs that she was entitled to benefits for her husband’s fatal brain cancer because of his exposure to the toxic defoliant Agent Orange.
“Shocked is probably the word,” Scarlett said, describing her reaction to what she found. “Story after story after story.”
Many Vietnam veterans are battling the VA to compensate them for a growing list of ailments they believe are caused by their exposure to Agent Orange. But because of the seriousness of glioblastoma multiforme — which is often fatal within months — widows are the ones left to fight.
As part of our Reliving Agent Orange series, ProPublica and The Virginian-Pilot have been recording the voices of those impacted by the herbicide, which contained the toxic chemical dioxin. Watch the videos.
The Department of Veterans Affairs must decide whether to add new diseases to its list of conditions presumed to be linked to Agent Orange. It also faces calls to compensate naval veterans and those who served along the Korean demilitarized zone. Read the story.
“There’s not a lot of people who fully understand what we’ve all gone through,” said Scarlett, who is now one of the leaders of the Facebook group, where women trade stories and help each other build their cases for benefits.
Scarlett, who lives outside Sacramento, brought an important skillset. As a certified tumor registrar, the 64-year-old spends her days searching through patients’ medical records, logging details about their lives and cancer diagnoses to help the state of California look for patterns.
Now, in her off hours, she gathers information about veterans who’ve died of glioblastoma, hoping to persuade the VA it should provide benefits to their widows. They believe dioxin, a contaminant of Agent Orange, caused their husbands’ cancers.
VA data shows that more than 500 Vietnam-era veterans have been diagnosed with glioblastoma at VA health facilities since 2000. That doesn’t include the unknown number diagnosed at private facilities.
But brain cancer isn’t included on the VA’s list of diseases presumed to be connected to Agent Orange exposure. Instead, widows must navigate a complicated claims and appeals process to show the cancer was “at least as likely as not” linked to the chemicals.
Proving exposure and harm is difficult for veterans; it’s perhaps even more challenging for widows, many of whom don’t have full command of their husbands’ service histories and have never had to deal directly with the VA bureaucracy.
The way the VA works, every benefits appeal is fought anew as if no others preceded it. So just because one widow succeeds, that doesn’t mean others will. “How can they approve one claim and deny another one with the same information?” Scarlett said. “There’s no rhyme or reason.”
Cases can drag out for six, eight, 10 years. One New York widow filed a claim in 1993, a month or two after her husband died of brain cancer. It’s still pending.
The VA did not answer questions about its handling of glioblastoma claims for this story.
Despite the obstacles, some widows have found a way to win. While the VA cites studies that don’t show an association between brain cancer and Agent Orange, the widows have found other studies that do, as well as a 1990 report written by Adm. Elmo R. Zumwalt Jr., the commander of naval forces in Vietnam who authorized the spraying and later chronicled its harmful effects.
If a widow is able to convince the VA her husband died from an illness caused by his military service, she is eligible for thousands of dollars each year in survivor benefits. Because the compensation is retroactive to when the initial claim was filed, some widows stand to receive tens of thousands of dollars, or more, upon winning their cases.
That’s proven challenging for most. Since 2009, the Board of Veterans’ Appeals has issued more than 100 decisions in cases in which widows have appealed benefits denials related to their husbands’ brain cancer, according to a ProPublica analysis of board decisions. About two dozen have won.
Laurel Holt, 65, was one of them. She had to sell her house and borrow money from relatives after her husband, Kenneth, died in September 2011, after a 19-month struggle with glioblastoma. In Vietnam, Kenneth Holt had sprayed Agent Orange from inside an Army helicopter. His uniform was routinely soaked in the toxin, he’d told her.
She won her appeal this July, nearly five years after his death, and has become a leader of the widows support group on Facebook, assisting three dozen women file claims and appeals.
“It’s a horrendous illness and death, for the wife, too, because she’s right in there in the thick of it with her husband,” Holt said. “And nobody should have to turn around after that and have to fight another battle. No widow should have to do that on her own.”
If a veteran can prove he served in Vietnam and has one of 14 conditions linked to Agent Orange, including diabetes, ischemic heart disease and some other types of cancers, he is automatically eligible for VA benefits.
Since brain cancer isn’t on the list, the onus falls to recently diagnosed vets or their widows to prove their conditions are linked to their exposure.
This often involves having a doctor write a letter to the VA asserting a possible connection and attaching some scientific support. One veteran’s widow submitted a letter from a prominent epidemiologist who works for the New York State Department of Health. Another turned in a letter from a neuro-oncologist at the Preston Robert Tisch Brain Tumor Center at Duke University. She wrote that Agent Orange was a “significant factor in causing, contributing to, or aggravating brain tumors in Vietnam veterans.”
Some say the VA’s default position is to reject claims for conditions not on the agency’s presumptive list.
“They’re still supposed to consider each case on an individual basis. That’s not what happens,” said Rory Riley-Topping, a consultant and former staff director for the House VA Subcommittee on Disability Assistance and Memorial Affairs. “You end up in that hamster wheel.”
The wait for a hearing before the Board of Veterans’ Appeals is growing ever longer. In the 2015 fiscal year, the board held 12,738 hearings; the number of veterans waiting for a hearing topped 81,000. The number of hearings has gone up slightly since fiscal year 2009, but the waiting list has doubled.
Among those whose cases have been heard, a growing number of widows have found support from judges in the past few years. “The weight of the evidence supports a finding that the veteran’s exposure to herbicides in service contributed substantially to the development of his fatal brain cancer,” wrote one judge in September 2014.
Another wrote in March 2015: “There is support in the evidence for the [widow’s] contention that there is a link between Agent Orange and brain tumors.”
Then there’s Maureen Weber. After more than two decades, she’s still waiting.
“Oh my heavens, we were high school sweethearts,” Weber said, describing how she met her husband Joseph. “We were in a senior play together, ‘The Hasty Heart.’”
The couple married in September 1964 and the following March, Joe Weber shipped off to Vietnam. A paymaster in the 716th military police battalion, his job was to travel the country in a small Piper plane, paying the troops.
After he left the service, Joe Weber managed a mobile home park and his wife worked as a nurse. They lived in Niagara, New York, with their three children, hanging an American flag in their yard that was so big, neighbors nicknamed their home “Perkins” after the restaurant chain known for its oversized flags. Every Fourth of July, the Webers invited neighbors over to say the Pledge of Allegiance, listen to military music and nibble on doughnuts and coffee. “He was so dedicated to his country,” Maureen Weber said.
By October 1992, Joe Weber wasn’t acting like himself. After Maureen’s father died a couple months earlier, she said, “he wasn’t there for me emotionally like he normally would be, and it bothered me that he seemed withdrawn.” She took him to the emergency room, and a day later, he was transferred to a hospital in Buffalo for surgery to remove a brain tumor.
While Maureen was waiting for the surgeon, an oncologist approached her “and he asked me whether my husband was a Vietnam vet, and I said, ‘Yes.’” When the doctor later met her husband, he asked, “Where exactly did you serve when you were in country?” Maureen recalled. She said her husband grew agitated at the suggestion his service could have been to blame.
Joe Weber died in May 1993, but not before losing his eyesight, having a stroke, becoming paralyzed on his left side and experiencing seizures.
Shortly after her husband’s death, Maureen Weber called the oncologist, Richard Cooper, to ask about his questions. “I said, ‘You kept asking Joe where he served. Is there a reason for this?’”
When he explained that he believed there was a connection between Agent Orange exposure and glioblastoma, “I said, ‘You’re kidding me.’”
That summer, Maureen filed a claim for benefits with the VA, the first step in what has been a 23-year odyssey. Her claim has been denied and appealed, denied and appealed, denied and appealed, denied and appealed — cycling four times between the Board of Veterans’ Appeals and the U.S. Court of Appeals for Veterans Claims.
Weber has a file of evidence about four inches thick. Included is a 1995 letter from Cooper saying, “It would seem to me that his malignancy was related to his service and exposure while in the service” and a 1994 letter from Joe Weber’s commander saying his men “were fully and constantly exposed to Agent Orange and other deadly contaminants.”
Maureen Weber is now represented by attorney Joseph Moore, who has won benefits for other widows. “This is supposed to be a veteran-friendly system where veterans get the benefit of the doubt from VA,” Moore said. “No case should be going on this long.”
Weber is now 74 and has her own health problems. She said she’s not sure she will see any resolution in her lifetime. If she does win, she said she will “do something extremely special for the patients in the Buffalo veterans hospital.”
“He wouldn’t have given up on me and I’m not going to give up on him,” she said. “I really sincerely feel that he died from Agent Orange, and I’ll never be convinced that he did not.”
When Weber lost her husband more than two decades ago, there wasn’t yet a support system for widows like her. That’s only developed in the past few years, as more and more vets succumb to glioblastoma.
Sue Engel calls herself a “mail order wife” because she met her husband, Doug, after responding to a dating ad he put in the paper in 1979. Before they met, Engel’s husband had served as a Marine in Vietnam. He died of glioblastoma in December 2010.
After her initial claims for benefits was denied, Engel went online looking for help. “I came across Sheree,” she said.
Sheree Evans, who goes by the nickname “Tiger,” is the Missouri woman who won her claim for benefits in 2011, nearly eight years after her husband’s death. Her story was picked up by blogs, and she wrote a self-published book about her ordeal. Since then, she estimates some 200 veterans and widows have gotten in touch to ask for advice.
“It didn’t even dawn on me how many there were out there,” Evans said. “The ones who have won are determined to help the ones that haven’t.”
Engel took the material she had printed out about Evans’ case and gave it to a VA staffer processing her claim. “This was all totally foreign to me,” she said. “I was just trying to fight for something that I thought Doug deserved.”
Engel secured benefits in August of this year, without having to go before the Board of Veterans’ Appeals. Still, it had taken her more than 5½ years.
Other widows across the country have reported a range of experiences with the VA. In North Carolina, Suzanne Mulligan hopes her case will soon be heard before an appeals board, four years after her husband died. In Florida this spring, more than nine years after her husband died, Elaine Morris finally won her case. And in New Mexico, Eileen Whitacre managed to secure benefits in 2012 without even having to appeal to the Board of Veterans’ Appeals. Now she helps others hoping to do the same, though some aren’t up to the fight.
“It’s too painful or it’s too overwhelming or they don’t understand the VA system so they’re discouraged and they choose not to file a claim,” Whitacre said. “It’s a painful time.”
On the Facebook group, women share letters their doctors wrote, as well as studies they might want to include with their claims. They discuss how to approach private physicians and how many letters of support they need. Some talk about struggling to pay bills, having lost their financial support system.
One point of contention is who should represent them. Some widows turn to lawyers to handle their case, while others work on it themselves or seek help from veterans service organizations. Holt, who won her case earlier this year with the help of the Disabled American Veterans, believes that lawyers, who can collect fees of up to a third of any award, aren’t necessary.
“I was not going to hire an attorney for help,” she said. “I just am totally against that. You shouldn’t have to hire a lawyer to receive what’s owed to your husband for his service to his country.”
Moore, the attorney, said the reason many widows seek lawyers is that VA has failed in its obligation to help them prepare their claims.
“It’s not my fancy legal argument that wins this. It’s simply the evidence I’ve developed, and that evidence is out there for everyone to get.”
Scarlett, who has worked with cancer data for more than four decades, said she knew something wasn’t right with her husband when he had difficulty getting words out in early 2013. She thought it could be a stroke or residual effects of a near-fatal car accident from a decade earlier. She didn’t consider the possibility of a brain tumor.
John Scarlett fared better than most, living for 2½ years with his condition. He died in November 2015.
After finding the other widows, Pegi Scarlett plunged into the work of trying to prove a connection to Agent Orange. She called her colleagues in the field and requested data from the VA.
The suit claims the VA failed to promptly process a FOIA request for correspondence with a consultant about the defoliant used during the Vietnam War. Read the story.
ProPublica and The Virginian-Pilot are exploring the effects of the chemical mixture Agent Orange on Vietnam veterans and their families, as well as their fight for benefits. See the series.
She noticed something odd in the agency’s response. From 2000 to 2007, between 22 and 31 Vietnam veterans each year were diagnosed with glioblastoma at VA facilities. Then the number jumped. From 2008 to 2013, 45 to 61 veterans were diagnosed annually. Meanwhile, the number of cases diagnosed in non-Vietnam veterans remained fairly consistent.
“My first question is, ‘Why?’” Scarlett said.
One answer could be that 2008 marks the point at which many veterans reached the peak age for a glioblastoma diagnosis. VA data shows that the median age at which Vietnam veterans were diagnosed was 61. For non-Vietnam veterans, the median age at diagnosis was 67.
Scarlett said she doesn’t believe the VA’s numbers are anywhere near complete. She has started building her own database, using information submitted by widows in the Facebook group. “The majority of those cases were never seen at a VA facility,” meaning they would not be reflected in the VA’s numbers.
Scarlett filed her claim with the VA in October. She knows it could be awhile before she gets an answer. Her main goal — and that of the Facebook group — is to see glioblastoma added to the VA’s list of conditions for which benefits are automatic. That way other widows don’t face the same fight.
Her husband was a Huey pilot during the war. While his helicopter was coming in for a landing, it was blown up by a remote-controlled mine. He suffered severe burns and others didn’t get out alive. He was awarded a Bronze Star for getting his crew out and setting up a defensive perimeter before being rescued.
Scarlett said she thinks his country should do more to honor his service.
“A lot of these widows were with their husbands while they were in Vietnam. They were married and had been with them all these years,” she said. “Hopefully 2017 will be the year in which we can say we fought the battle and got this on the list.”