Since Sen. John McCain announced last month that he had been diagnosed with glioblastoma, there’s been a demonstrable spike in attention paid to this deadly type of brain cancer, both by members of Congress and the national media.
Last month, Healthline was the first national publication to report that McCain’s cancer could have been caused by his exposure to Agent Orange, the toxic herbicide that was sprayed by U.S. military throughout South Vietnam during the Vietnam War.
Stories about glioblastoma, and its possible link to Agent Orange, subsequently ran in several major news publications.
That includes an Aug. 7, Houston Chronicle editorial that noted Vietnam War veterans were concerned about a “possible connection” between exposure to Agent Orange long before McCain was diagnosed.
ProPublica reported that more than 500 Vietnam-era veterans have been diagnosed with glioblastoma at Veterans Administration (VA) health facilities since 2000, but noted that “this does not include the unknown number diagnosed at private facilities.”
Newsweek also published a story on this topic: What Does John McCain’s Brain Cancer Have to Do with the Vietnam War and Agent Orange?
Rick Weidman, co-founder and primary spokesperson in Washington for Vietnam Veterans of America (VVA), the oldest and largest veterans service organization for Vietnam veterans, told Healthline there is “new energy surrounding the glioblastoma issue, as more Vietnam veterans come down with this cancer and the media attention increases.”
The war continues
But for thousands of Vietnam War veterans and their families, the battle continues.
There are now more than a dozen diseases presumed by the VA to be linked to exposure to Agent Orange, including non-Hodgkin’s lymphoma and Parkinson’s disease.
But glioblastoma, with which Vietnam veterans are now being diagnosed at a rapid rate, is still not on the presumptive list.
A large number of neuro-oncologists and other cancer and brain experts nationwide have already started writing that there is more than likely a link between glioblastoma and exposure to Agent Orange.
But the VA continues to make Vietnam veterans with glioblastoma, and their families, jump through hoops to prove their disability cases.
Because this cancer is so deadly, many veterans die before getting their benefits, leaving their families grapple with the government.
New effort to help families cope
But nationwide, there is a new effort under way to help these veterans and their families by getting glioblastoma on the presumptive list.
Weidman noted there is already “significant research” showing that glioblastoma is associated with the toxic chemical dioxin, which is in Agent Orange.
Weidman said the VVA is preparing to reach out to David Shulkin, whom President Trump tapped as the new head of the VA, to urge him to put glioblastoma on the presumptive list.
Weidman is optimistic that Shulkin will make a positive difference for these families.
“I don’t think Dr. Shulkin will be influenced by the wrong people,” Weidman said. “He is the right man for this job.”
Fighting for war veterans
Two weeks ago, Senate Minority Leader, Chuck Schumer, and Rep. Louise Slaughter, the 30-year congressional member from New York, held a joint press conference urging Shulkin to take a closer look at Vietnam veterans diagnosed with glioblastoma.
Schumer and Slaughter focused the press conference on Tom Cray, a veterans’ advocate from Rochester, NY, who completed two combat tours at the height of the Vietnam War.
After he came home, Cray established the Veterans Resource Center, one of the nation’s first community-based veteran advocacy organizations.
From humble beginnings, the center grew to become a national model for how veteran services could operate.
Earlier this year, Cray was diagnosed with stage 4 glioblastoma. His physicians have stated in writing that his cancer is likely linked to his exposure to Agent Orange while serving in Vietnam.
Dr. Kevin Walter, a neurosurgeon, wrote in his assessment of Cray that the veteran has “a history of extensive exposure” to the deadly defoliant — one of the only links to glioblastoma is exposure to organic chemicals — “so I would consider his cancer to be linked to his service time.”
But the VA denied Cray’s disability claim, despite the fact that other Vietnam veterans exposed to Agent Orange and diagnosed with glioblastoma have won their disability benefits.
“We did not find a link between your medical condition and military service,” the VA told Cray and his family.
VA officials said Cray must provide independent medical studies or evidence to support his claim, despite the fact that this type of evidence has previously been submitted by other veterans.
Cray’s family has essentially run out of resources to help him. But his daughter, Lindsay Cray, is working to help her father get the claim approved by the VA.
And she has been joined in her cause by Schumer and Slaughter.
‘Veterans are our responsibility’
In an interview with Healthline, Slaughter said she has written several strongly worded letters to the VA, urging the agency to consider Cray’s case and other glioblastoma cases like his.
“We’ve been writing letters to the VA to put it on the [presumptive] list. They don’t write or call,” she said. “But when we’re back in session, we will get more people to join us. It has to be done. Veterans belong to us. Veterans are our responsibility.”
“I absolutely support the idea of putting glioblastoma on the VA’s presumptive list for veterans,” Slaughter said. “I’m very aware of what happened in Vietnam with Agent Orange. My heart hurts for everyone who was there and who lives there now.”
Slaughter said she and Cray go back several decades.
“Tom was my first district director. He worked in our office. We first met him in 1987,” Slaughter recalled. “We go all the way back to when he was just a baby [laughs]. He is very special to all of us, and what he did by establishing the Veterans Outreach Center, all Vietnam vets owe him a debt of gratitude.”
Slaughter and Schumer have been pushing the VA to recognize not only Cray’s case, but also the cases of many veterans and their families dealing with glioblastoma and not getting help from the VA.
Slaughter said she first learned about glioblastoma when her colleague and friend Sen. Ted Kennedy was diagnosed in May 2009. He died four months later.
Since that time, Slaughter said, research has come a long way.
“I’m very impressed that neuroscientists and others are getting closer to finding good treatments for glioblastoma that utilize the body’s immune system,” she said. “It’s only a matter of time now before we will have effective new treatments.”
Family still fighting
In his letter to the VA, Schumer said the agency should consider Lindsay Cray’s appeal “since she had unanimous medical opinions, but in order to proceed the VA is requiring Lindsay Cray to submit copies of medical studies and any other materials to show the linkage between Agent Orange and glioblastoma.”
Schumer questioned the logic of that, given the fact that the VA has previously approved nearly two dozen similar claims, but still “requires every claimant to start from ground zero, putting the burden on families and sick veterans to research medical journals or provide studies to get the VA to approve compensation.”
Lindsay Cray told Healthline the same thing, explaining that even though a lot of veterans have won their glioblastoma cases, and have proven that it was more than likely caused by Agent Orange, the VA arbitrarily makes each family suffer needlessly.
“If they have won cases, why is VA asking families with new claims to do their own medical research? Why are they exacerbating the pain we suffer?” she questioned.
Without the strong support network that the Cray family has, Lindsay Cray said, “There is just no way to defend your loved one to get disability coverage. It’s disgusting. VA said you have to prove it to us. I’m not a medical expert.”
She also said the VA’s so-called experts are often not experts at all.
“Who they use as their medical experts in deciding these claims is offensive and insulting,” she said. “The person that decided if my father’s coverage is approved was a nurse practitioner who did a three-document Google search.”
She said the nurse’s word was more important than the three doctors who were experts on her father’s case.
Cray said that the VA “expects that people like me are going to go, ‘Oh, well, I guess that’s it for us,’ and walk away. The VA didn’t realize that I will not let this go. Or that we’ve got a backup and support system. It’s an overwhelming battle, the medical research, communicating with VA, doing all the research, they make it so you can’t win.”
The Cray family ran out of resources, so they established a crowdfunding site.
“Tom Cray isn't just my father. He is a hero to so many more,” Lindsay Cray said on the site. “In his 40 years of work with veterans, he has worked tirelessly to advocate for hundreds of other brothers and sisters in arms and their families, and his latest battle now with glioblastoma is no exception.”
“His fight is helping to shine a light on the need for the VA to address glioblastoma’s connection to Agent Orange so that veterans and their families can receive the rightful care and support they need,” she added.
Glioblastoma widow gives thanks
Kathy Josenhans’ husband was a Vietnam veteran, Navy Seal diver, and retired police officer. He died of glioblastoma in 2011.
She just filed a new appeal on behalf of her late husband after being denied benefits five times.
“I have a new sense of patience, I feel like I can fight because of what Healthline has done,” Josenhans said. “I have new energy. I feel very confident that we are going to get there. But even if I win my case and it’s not on the presumptive list, I will continue to fight for other families.”
After the Healthline story ran last month, Josenhans said she stapled that story along with a story from ProPublica to her letter to the oncologist helping her with her claim.
“I was crying, and I said here is more information,” Josenhans said. “The Disabled Veterans of America (DAV) representative told me there is a lot of noise being made about brain cancer. I do think it’s moving in the right direction.”
Despite the new energy surrounding the issue, many veterans and their families interviewed by Healthline remain frustrated.
They hope this latest buzz about glioblastoma makes a difference.
“I pray it does, but I’m not going to hold my breath,” said Margee Morris, whose husband, Rudy, served in Vietnam and died of glioblastoma at age 59.
Margee has submitted a claim — for the third time — regarding her husband’s case.
“After the first two, I gave up on my claim and just worked gathering more ‘Nam vets,” she said. “I haven’t had much luck with veteran service organizations helping so far. All they say is that it’s a lost cause. My claim is complicated, so doubt I would ever win, but I will keep fighting for all of the other widows.”
VA responds to Healthline
Despite the fact that at least several dozen veterans with glioblastoma were awarded their benefits, a VA spokesperson told Healthline that the agency currently does not recognize a connection between Agent Orange exposure and glioblastoma.
But as a result of all the recent attention given to glioblastoma by the media and politicians, the agency is reexamining the issue.
“[Secretary] Shulkin appreciates Senator Schumer’s concerns on this important topic, and will respond to his letter directly,” the VA spokesperson told Healthline.
The spokesperson explained that the VA contracts with the National Academy of Medicine (NAM) every two years to provide a full scientific review of the available research on Vietnam Veterans with potential Agent Orange or other herbicide exposures.
“In its 2014 report, which was published in March of 2016, NAM found no evidence for an excess of brain cancer in Vietnam veterans. This finding was the same as in the previous nine reports from 1996 to 2012,” the spokesperson said.
In a 2017 public meeting, the VA spokesperson added, the agency “charged the NAM Committee studying Agent Orange to focus special attention on brain cancer and glioblastoma. Additionally, in the VA’s Vietnam Era Health Retrospective Observational Study, which is surveying thousands of Vietnam Veterans and other comparable populations, VA asks about the diagnosis of brain cancer.”
Schumer urges VA to do more
While Schumer wants more studies and full disclosure from the VA, multiple sources for Healthline said there is already widespread agreement among medical experts that there is a link between glioblastoma and Agent Orange.
Joe Moore, a partner at Bergmann & Moore, a law firm that solely represent veterans with disability cases at the VA, said the new buzz surrounding glioblastoma is a positive thing for veterans.
“We as a nation are coming to realize the problems faced by veterans with glioblastoma, and that is a very good thing,” Moore said. “The tragic news about Senator McCain has a silver lining in that it has increased attention, and more people now are aware of the movement to help veterans with glioblastoma who are not being treated fairly.”
Moore said glioblastoma is just one of several cancers that doctors have already said are linked to Agent Orange, but they are still not on the VA’s presumptive list.
“We have won colon cancer Agent Orange cases,” Moore said. “If a veteran served in Vietnam, didn’t smoke, and has almost any type of cancer, and has no unusual obvious post-service risk factor, I will take that case almost every time. I know that unbiased oncologists will generally link this to Agent Orange.”
Because, Moore said, Agent Orange is simply that toxic.
“Among the many doctors I have spoken to about this, they universally believe Agent Orange is extremely dangerous, and they are not hesitant to connect it with a whole host of cancers that the VA doesn’t recognize,” Moore said.
New treatments are coming
On the treatment side, there are several new clinical trials of drugs that could be effective against glioblastoma.
Curtana Pharmaceuticals received special status from the U.S. Food and Drug Administration (FDA) for a glioblastoma treatment that has shown promise in stopping the spread of cancerous cells while sparing normal ones in animal models, the company said.
The FDA has granted orphan drug designation for Curtana’s CT-179.
Tom Cray still fighting
Meanwhile, Tom Cray continues to wage what he and his family are calling the toughest battle of his life.
But he remains a steadfast supporter of his fellow veterans.
In an exclusive, but brief interview, Cray told Healthline, “I hope the Vietnam veterans with glioblastoma have every opportunity to get the services they need.”
Regarding Schumer and Slaughter, he said, “I’ve known both of them a long time. I’ve done a lot of work with them over the years.”
Slaughter, who described Cray as a “brave warrior,” said she is working hard to help him and other veterans with glioblastoma, as well as their families.
“Tom is having an awful time, and the VA won’t help him,” Slaughter said. “He’s a terrific person. I saw him a month and a half ago. He was still up. He looked great. He still had his black hair and snappy eyes, and we marveled at how well he looked. “
But for Cray and many Vietnam veterans who’ve been diagnosed with glioblastoma, time may be running out.
“Sad as it is to say, my mom is 72, my dad is 67, and I’m 35, and most people of my generation don’t have a parent who went to Vietnam,” Lindsay Cray said. “Other peers’ parents didn’t serve in war, just their grandparents. So it’s not something that is relatable to the majority of people who watch the news. I’m in the cusp between millennial and Generation X. There are just not many that care, unless it hits you close to home.”