Pegi Scarlett was a bit nervous in the moments leading up to her speech last November at a meeting of the National Academies of Sciences, Engineering, and Medicine in Washington, D.C.
“It was kind of intimidating at first, with all the epidemiologists and physicians watching, but they gave me a very warm reception,” said Scarlett, 65. The gathering was part of the National Academies’ effort to determine if it should recommend any additions to the Department of Veterans Affairs’ list of “presumptive diseases” caused by exposure to Agent Orange, the toxic herbicide used by the Department of Defense during the Vietnam War.
Her talk focused on her husband, John Scarlett, an Army Ranger and helicopter pilot in Vietnam who was among the 2.6 million U.S. personnel believed exposed to Agent Orange during the war. He died in November 2015.
His cause of death was glioblastoma, a lethal brain cancer that is not on the VA’s list of presumptive diseases, but is being diagnosed at an evidently accelerated rate in the past few years among Vietnam veterans who were exposed to Agent Orange.
Scarlett, a cancer registrar with six grown children, traveled from her home near Sacramento, Calif., to the nation’s capital to give her impassioned presentation, which balanced memories of her husband with data she’d collected about his cancer. The speech elicited loud and long applause and left some NAS scientists in tears.
“We left Washington feeling very optimistic,” said Scarlett, who was accompanied by two other widows of Vietnam veterans who died of glioblastoma, Kathy Josenhans and Laurel Holt, who also gave short but substantive speeches. “We knew they wanted to help us,” Scarlett said.
But will they? The NAS has no mandate power over Veterans Affairs. It can only advise the department, which has taken decades to acknowledge how harmful TCDD, the dioxin in Agent Orange, really is.
There are 14 diseases now presumed by the VA to be caused by Agent Orange exposure. But countless veterans and their families who try to get disability and survivor benefits are still turned away, left to contest their claims on a case-by-case basis. When she gave her speech last fall, Scarlett was still fighting for her survivor benefits.
Just two weeks ago, after a 2½-year fight, she won her case. But she said she won’t rest until the hundreds of other glioblastoma families are recognized by the VA.
“I’m still fighting for all the veterans and widows who haven’t won,” said Scarlett, who, along with Josenhans, Holt, and others, runs a Facebook page for veterans with glioblastoma and their families—a group that has dramatically grown in the past year.
There are 430 confirmed Vietnam veterans with glioblastoma now in Scarlett’s database. Most of them are deceased. Diseases and conditions that are common among Vietnam veterans but are still not on the presumptive-diseases list include bladder cancer, high blood pressure, and glioblastoma. Before they would even have a chance of receiving disability or survivor benefits, veterans and their family members must prove that the glioblastoma was “at least as likely as not” to be caused by Agent Orange exposure.
Veterans with glioblastoma and their family members say the process of filing a VA claim is painstaking and at times downright cruel. “Some veterans and their widows have won their glioblastoma cases at VA,” she said. “So why is every veteran and widow who files a disability or survivor claim forced to re-litigate the issue?”
Scarlett, who says she leverages her research skills as a cancer registrar to collect her data, included in her claim several studies from other countries that show agricultural workers exposed to TCDD have higher rates of brain cancer.
Curt Cashour, press secretary of the VA, told The Daily Beast the agency relies on medical evidence from “internationally recognized scientific authorities,” as well as its own independent review of the latest science, to make its determination on Agent Orange-related claims from veterans and their families.
“Since 2003, VA has granted service connection for glioblastoma to 46 veterans out of 150 who have applied for disability compensation. Six of the 46 veterans had served in Vietnam,” Cashour said.
Scarlett said those numbers are misleading because the majority of the hundreds of glioblastoma-related claims submitted to the VA she knows of are not for disability benefits—they are survivor-benefit claims. In addition, she argues the VA is making decisions about glioblastoma based on incomplete numbers. “My husband and 69 percent of the veterans in our group were treated for their glioblastoma at a civilian hospital and never seen at a VA facility,” she said. “The VA has no idea how many people are actually being diagnosed.”
To be sure, the lethal form of brain cancer is affecting more than American war veterans. A 2016 study by the American Cancer Society estimated 2-3 cases per 100,000 people worldwide, with a median survival time from diagnosis of one year. It is more common in men, in white people, and in the U.S., Canada, Australia, Denmark, Finland and New Zealand, but researchers can’t explain why.
Cashour said Veterans Affairs “does not track specific statistics on how many widows are receiving survivor benefits related to glioblastoma.”
Scarlett argues that “makes no sense,” and noted that when a Vietnam veteran with glioblastoma dies and the family makes the transition from a disability claim to a death indemnity claim, “it is still a glioblastoma and Agent Orange claim. Why is the VA not tracking this?”
When a widow in her group prepares a claim, Scarlett said, “We make sure they include the same studies, the nexus letters, the statements of where the veteran served, so that the claims are consistent. So then why does one get approved and another does not? It seems to depend on whose desk it appears. Who is reviewing these claims?”
In the meantime, another group of Vietnam veterans who are struggling with a variety of diseases and conditions that are on the presumptive list but not getting their claims approved are the 90,000 sailors of the Blue Water Navy. These veterans, who served on ships in the bays, harbors, and territorial seas of Vietnam during the war, and their loved ones have been fighting Veterans Affairs for decades to get their claims approved.
While the VA to date has not budged, the tide now appears to be turning toward the sailors. Former Secretary David Shulkin, who was fired by President Trump in late March, voiced his support of the Blue Water Navy during his tenure.
“I would like to try to find a way where we can resolve that issue for them, rather than make them continue to wait,” Shulkin said. “I do not believe there will be scientific data [to] give us a clear answer, like we do have on the Agent Orange presumptive” list. “For the Blue Water Navy… epidemiologic studies just aren’t available from everything I can see. So, we’re going to have sit down and do what we think is right for these veterans.”
This month, the House Veterans Affairs Committee approved legislation to extend Agent Orange-related benefits to the Blue Water Navy. The committee voted unanimously to send a bill to the full House. The idea reportedly has bipartisan support in the Senate, too.
Joe Moore, a former VA attorney and founding partner of Bergmann & Moore, which has successfully handled disability appeals for hundreds of veterans who were exposed to Agent Orange and other toxins during their service, said the House decision on the Blue Water Navy is a positive sign.
“The Blue Water Navy veterans were exposed to Agent Orange in many different ways that VA has known about for years,” Moore said. “That exposure came from such things as ingestion of polluted water, cleaning off planes covered in Agent Orange, the onboard storage of Agent Orange, and missions to Vietnam that did not make it into personnel records.”
Moore said the VA has forced each of these veterans to prove the exact source of their Agent Orange exposure, and that this is “close to impossible” in most cases because the records that would prove most of these exposures simply don’t exist.
“Even when such records do exist, it is extremely hard for the average veteran to track them down,” Moore said.
Mike Yates, 68, who served on the USS Bainbridge off the coast of Vietnam from 1971 to 1972, has prostate cancer, which is on the presumptive list. But the VA has denied his disability claim.
“I’m pleased to see the House Veterans Affairs Committee approve the legislation,” Yates said. “It’s a long time coming. But it’s only the first step.”
Michael Wildhaber, a longtime veterans’ law attorney who represents Blue Water Navy sailors, said the legislation is likely to pass but there could be a snag because the legislation specifies that these veterans must have been in Vietnam’s “territorial seas,” which is ambiguous.
During the Vietnam War era, the generally accepted definition of territorial seas was three nautical miles offshore. In 1982, Wildhaber said, most countries signed a treaty that calls for the definition to be 12 nautical miles offshore.
“Unless the VA agrees that the zone is 12 miles out, many Navy veterans still could be excluded because many Navy vessels never got anywhere near three miles of the coast of Vietnam, including aircraft carriers and their big-draft support ships, such as oilers and ammo supply ships,” Wildhaber said.
“I would not put this past VA officials, who historically have been very hostile to presumptive compensation for Vietnam veterans who claim exposure to herbicides,” he said.
Kathy Josenhans, who spoke along with Scarlett at the National Academies meeting, is both a Blue Water Navy widow and a glioblastoma widow. Her husband, Frank Josenhans, spent six years in the waters off of Vietnam as a Navy diver. He died of glioblastoma in 2011.
Kathy, who’s struggled physically and financially without her husband, has been fighting the VA for her survivor benefits for the last seven years. The House vote, and the fact that Scarlett and some other widows are beginning to get their claims approved, give her new hope.
“My husband was my hero, he took care of me,” Josenhans said. “After he died, I only got survivor benefits from Social Security, $500 a month. I have spina bifida, it gets worse as I get older. I have a bad limp, neuropathy, phantom pain from nerve damage. It makes it hard. I can’t go to work.”
Chuck Hagel, a Vietnam vet with two Purple Hearts who went on to be a U.S. senator and secretary of defense, said the current fight over Agent Orange benefits is all too familiar.
He was a pioneer in the fight for Agent Orange awareness: A top deputy at what was then called the Veterans Administration, Hagel resigned in 1982 after a bitter disagreement with his boss, Robert Nimmo, a World War II veteran who wanted to cut funding for Agent Orange studies and psychiatric counseling at veterans’ centers.
“The Reagan White House wanted to cut funding for veterans centers and Agent Orange epidemiological studies that had begun under Max Cleland and Jimmy Carter,” said Hagel, who from that era to now has been widely lauded as a champion for veterans.
While he would not comment specifically on the type of claims coming from the Blue Water Navy or glioblastoma patients and families because he has not studied their claims, Hagel said all who file an Agent Orange claim need to be heard and respected by the VA.
“When you are dealing with these deadly toxic chemicals, we owe it to these people to take a closer look,” he said. “The fact is, we needed to know more about Agent Orange then, and we still do.”