By Charles Ornstein and Terry Parris Jr., ProPublica, and Mike Hixenbaugh, Virginian-Pilot

The U.S. Department of Veterans Affairs is expanding its efforts to determine how Vietnam veterans and their children have been affected by exposure to the herbicide Agent Orange.

The VA will conduct its first nationwide survey of Vietnam veterans in more than three decades and request an outside panel of experts to continue its work studying the health effects of Agent Orange on veterans, their children and their grandchildren. Both initiatives were discussed Thursday in Washington at a forum hosted by ProPublica and The Virginian-Pilot on the possible multi-generational impacts of Agent Orange.

Vietnam veterans have argued for years that their exposure to the toxic herbicide has damaged their health as well as their children’s. From 1965 to 1970, some 2.6 million U.S. service members were potentially exposed to Agent Orange, which contained a dangerous strand of the chemical dioxin. While the VA has linked Agent Orange exposure to a host of diseases in Vietnam vets, experts and veterans advocates have criticized the lack of research into the effects on future generations.

“I believe that these individuals deserve an answer,” Linda Spoonster Schwartz, the VA’s assistant secretary for policy and planning, said in response to a question about the lack of research. “I believe that we need to at least ask the question. … This is the right thing to do.”

ProPublica and The Pilot have been examining the effects of Agent Orange for the past year and have heard from more than 5,500 veterans and their families. Thursday’s forum – titled A Toxic Legacy: Has Agent Orange Hurt the Children of Vietnam Vets? – featured veterans advocates, researchers and policy makers. It also provided a rare opportunity for frustrated veterans to vent directly to high-ranking VA officials. Veterans came from as far away as Mississippi and Pennsylvania to share their stories. Pilot photographer Stephen M. Katz told of his own health problems, which he believes may be linked to his father’s exposure to Agent Orange.

In one emotional exchange, Reginald Russell Sr., an Army veteran from Suffolk, Va., rose from the audience and accused the VA of ignoring anecdotal evidence that Agent Orange had harmed children of vets. Russell’s first son, born shortly after he returned from Vietnam in 1971, died inexplicably at 9 months old. His youngest son, born a few years later with a heart defect, died in 2012 at 32.

Russell held up a photo of a grave marker: “That’s my child,” he said, choking up.

“I can’t imagine the pain you’re having,” said Schwartz, who joined the VA in 2014 after years spent researching and advocating for Vietnam veterans exposed to Agent Orange. “Let me say that this is a new day. … We can do this study. I know you’ve heard this before, and so have I, but we will do this not just for the ones who have passed away, but for the ones who have yet to be born.”

A small number of male veterans’ children – those born with spina bifida – are eligible for Agent Orange disability payments from the VA. So are the children of female vets born with about a dozen other defects.

Although the vast majority of Vietnam veterans are men, most of the research about the transgenerational effects of Agent Orange has been focused on women, said Dr. Kenneth Ramos, chairman of an Institute of Medicine committee that recently reviewed research on Agent Orange.

Ramos said scientific evidence increasingly supports the idea that a father’s exposure to toxins can affect his offspring genetically, potentially harming children and grandchildren. But more research needs to be done.

“The scientific studies that have been conducted have not yet provided the evidence,” he said.

Ramos said he was pleased to learn the agency was launching a nationwide survey.

Victoria Davey, a senior VA scientist and a lead researcher on the project, said her team would begin mailing questionnaires to randomly selected Vietnam era veterans in the fall, asking dozens of questions about their health and economic status, as well as the health of their children.

“The major question in this study is ‘am I different?’” Davey said. "Is the Vietnam veteran different from the U.S. public and other service members who served at the time” but did not deploy.

The research will take years, Davey said, but she hopes preliminary results will begin answering the question as early as next year.

Heather Bowser, co-founder of Children of Vietnam Veterans Health Alliance, said she supports the VA’s new efforts but lamented that the work is only now beginning. Bowser’s father was exposed to Agent Orange in 1968. A few years later, she was born prematurely, missing a leg, a big toe and several fingers. She leads a group of more than 3,700 other children of Vietnam veterans who believe their health has been affected by Agent Orange.

“I’m 43 years old,” said Bowser, who was on the panel. “How much more time should my family have to wait?”

One of the challenges of understanding the effects of Agent Orange is the lack of data collected during the war, making it nearly impossible to know if or how much any given veteran was exposed to the toxins. The same is true of Iraq war veterans who may have been exposed to depleted uranium or toxic burn pits.

The VA’s Schwartz revealed plans for a pilot program in partnership with the Department of Defense to begin tracking environmental exposures of service members in real time, possibly making it easier in the future to understand how military service affects a veterans’ health.

As the forum came to a close, Peter D. Rumm, director of the VA’s pre–9/11 era environmental health program, announced the agency’s intention to ask the Institute of Medicine, part of the National Academies of Sciences, Engineering and Medicine, to conduct another review of Agent Orange research, including a look into the effects on veterans’ children. The request comes months after the IOM wrapped up its 10th and final biennial Agent Orange report.

Rumm encouraged those in attendance to keep applying pressure.

“Government reacts,” Rumm said. “Those of you in the field and those of you affected by this, keep pushing, because eventually things will happen.”

To Learn More:

VA Officials Pledge New Studies Into Effects of Agent Orange (by Charles Ornstein and Terry Parris Jr., ProPublica, and Mike Hixenbaugh, Virginian-Pilot)

Politics and Cost Wrongly Influence VA Decisions on Agent Orange Vet Benefits (by Charles Ornstein, ProPublica, and Mike Hixenbaugh, The Virginian-Pilot)

New Evidence Linking Bladder Cancer to Agent Orange Gives Vietnam Vets Hope in Fight for VA Benefits (by Mike Hixenbaugh, The Virginian-Pilot, and Charles Ornstein)