50 year fight with Agent Orange
Vietnam vet still battles chemical exposure daily
TUPPER LAKE — Stuart Burnett fought in Vietnam from 1969 to 1970. He says that while in combat he was exposed to the herbicide Agent Orange. In the 50 years since, he has been locked in two different sorts of battles: one with breathing problems brought on by his exposure, and another with the U.S. government, which he said has failed to recognize his exposure and give him the treatment he needs.
Burnett said this is killing him.
“I’m running out of time,” he said.
Burnett, like many other Vietnam veterans exposed to Agent Orange, struggles against the country’s health care, health insurance and Veterans Affairs systems trying to have his condition diagnosed and treated. These systems are complex, bureaucratic and hard to navigate. All the while, he is fighting with breathing troubles daily.
Hard to breathe
He said sometimes he can feel breathing attacks coming on, like someone is sitting on his chest. But they happen suddenly, too.
“I’ll be standing here talking to you, and next thing you know I’m on the ground,” Burnett said.
His wife is always there to bail him out with treatment. He’s been lucky so far, he said, but he feels like giving up. He said when he goes unconscious and wakes up in the hospital, he’s most worried about calling the VA within a certain period of time to get his bills covered. Still, he said, he has to fight for assistance, and the VA bounces bills back to him. Now collection agencies are looking for a couple hundred thousand dollars.
In June, he said, he asked doctors to “give me something to put me out forever.”
“With all the medical bills, all this going on,” Burnett said, “I told my wife, ‘If I drop this time, do not call. I can’t afford it no more. When I’m down, just let me go.'”
What is Agent Orange?
Agent Orange was a herbicide the U.S. military used in the Vietnam war to defoliate the dense jungles the North Vietnamese military used for cover. The U.S. also used Agent Orange to destroy farm crops believed to be used to feed those troops.
It is not healthy for humans. Burnett said soldiers had an idea of this risk in the war and were told to avoid it. Nevertheless, the military decided to ignore the danger and blanket the land with the chemical, exposing perhaps millions of people — hundreds of thousands of U.S. soldiers plus Vietnamese soldiers and civilians.
In 1990 the Washington Post reported that the U.S. government had long covered up and denied the link between Agent Orange and veteran medical struggles, citing declassified reports showing it knew the risks of using the herbicide, used it anyway and then pushed propaganda to deny its link.
Agent Orange is known to cause lung cancer, COPD and a slew of other respiratory diseases, as well as birth defects, and it is suspected in other ailments as well.
A 50-year fight
A month after turning 18, Burnett was flown from Camp Pendleton in California to Vietnam. He was told at the time he was the youngest Marine in the country.
He was a healthy teenager when he joined the Marine Corps, he said, but while in the swamps of Vietnam he was sprayed with Agent Orange from a U.S. plane dropping the herbicide. He was medevaced right away and returned home, but the effects of the exposure stayed with him.
He said it only got worse as he got older.
Now he is swamped with medical bills, insurance claims and paperwork trying to get the medication he believes can help him. He experiences asthma-like symptoms daily and crippling breathing attacks on occasion, but typical asthma solutions do not help him.
“The medication that they give me is a pacifier,” Burnett said. “The meds that work, I have to fight like hell just to get them.”
He said he uses an inhaler and several other medications throughout the day, and he has an EpiPen for emergencies. But he said the medications he gets when he is hospitalized are the only ones with lasting effects.
He was told years ago at an Albany VA clinic that he may have Agent Orange in the lining of his lungs, constricting his breathing, but though the federal government has acknowledged his exposure, he said he is in a bureaucratic loop when it comes to diagnosing and treating his illness.
Burnett said there needs to be a simplification of VA and health care systems to help veterans in situations like his. He said they are not user friendly.
He said he is not sure why the VA will not recognize his Agent Orange exposure. This lack of documentation of his exposure leads to difficulty getting treatment.
“Why do we have to fight 50 years to prove it?” Burnett said. “Give me the proper treatment, and let’s see if it works.”
He said he refiles his claim of Agent Orange exposure every year. Every year he is prescribed medications he knows don’t work. Meanwhile, he struggles to continue breathing.
In 1991, Congress passed the Agent Orange Act requiring the VA to cover diseases common in Vietnam veterans if there was a scientific link between herbicide spraying and an illness, without needing to show definitive proof that the chemical caused the ailment.
The act ran out in 2015 and has never been renewed. Burnett turned 65 in 2017 and began leaning on VA coverage as he couldn’t get his state employee insurance any more.
Burnett did not need to rely on the VA for many years, as he’s always had good insurance through New York state jobs at the Office of Mental Retardation and Developmental Disabilities (now the state Office for People With Developmental Disabilities) and the Department of Environmental Conservation.
“They covered everything: my medications, my co-pays. I didn’t care about joining the VA because I never went for benefits. I didn’t want to be like a beggar, because that’s the way they make you feel,” Burnett said. “Then when you turn 65, New York state drops you like a bad habit, and they force you to take Medicare, which doesn’t pay anything.”
His medication and EpiPen costs multiplied by nearly 100 times, he said.
“I think I figured it out; I was going to have to pay $6,000 a month to continue breathing,” Burnett said.
Now Burnett said his bills are piling up and he is scared about dying. He keeps active through his work as an electrician, roofer, painter and plumber.
“I have to pay for all my co-pays and my medical somehow,” Burnett said.
He said he keeps his emergency bag in the truck and tries to stay off roofs.
“The health care system really sucks,” Burnett said. “Cut the paperwork. Cut the crap.”
This lack of assistance and recognition of his situation is dehumanizing, depressing and discouraging, he said.
“I’m nobody,” Burnett said. “It seems like the federal government just don’t care.”
So he started being his own advocate. For years he has called politicians at the local, state and federal levels for assistance, but he never got much help.
“In 50-something years I had not had a politician yet that would want to help me,” Burnett said. “If you can’t go to your elected officials, who the hell are you supposed to go to?”
But last year he finally found one he feels has listened to him — the office of U.S. Rep. Elise Stefanik.
Someone told him to email Stefanik’s office. He did and was surprised to get a response. He said his request got a return email and call from Stefanik’s office. They sent him papers to fill out, one asking what information he could give her to bring to the floor of the House of Representatives.
Stefanik has supported several bills addressing Agent Orange coverage, and though they are still a long way from being passed, Burnett said it feels good just to be noticed.
“All we’re asking for is stop the bureaucratic red tape,” he said. “Stop the bickering and fighting up there on Capitol Hill. They’re fighting over everything but taking care of their own people … their own citizens.”
The Keeping Our Promises Act Stefanik supports would extends coverage from 2015 until 2030 as well as expand the number of diseases covered by the “presumption of service connection” relating to herbicide exposure. Most importantly, it adds language saying the U.S. Treasury secretary may not take into account the costs relating to paying compensation for these diseases.
This bill was introduced in early 2019 but has not moved out of the House Committee on Veterans’ Affairs, in part because of the COVID-19 disruption.
Last year, the budget division of President Donald Trump’s administration fought expansions to Agent Orange exposure, claiming the scientific link between the chemical and medical maladies veterans experience now is not strong enough, and saying they are brought on by old age rather than exposure.
The COVID-19 pandemic has only made things more difficult. Burnett gets tested regularly for the respiratory virus. Wearing a mask is hard for him; it limits his breathing. Booking appointments with doctors or the VA has also become difficult.
Burnett said he last fell unresponsive in June and spent four days in the intensive care unit. He hasn’t been able to get a follow-up appointment since then because the medical field is busy with the COVID-19 pandemic.
Things are exacerbated by Tupper Lake being far from federal facilities and major health care centers. However, Burnett said the local emergency medical technicians and hospital workers he sees in his worst moments are awesome and care very much.
He used to work with some of them, having been a volunteer firefighter for 33 years and a member of the dive team with the rescue squad. He said Vietnam veterans in Tupper Lake have a “buddy system” and keep track of each other. However, he said, many of them have died recently.
“They fought until the day they died, same crap through the VA,” Burnett said.
He said they do not want money or compensation; they just want to be prescribed the proper medications.
The complexity, red tape and seeming lack of help from these systems, he said, leads to anxiety and frustration. He said veterans try to keep this to themselves, not letting it show to their family or at their job.
“We’re all pretty good at hiding,” he said.
Burnett is not hopeful that any help will come soon.
“I blame the federal government. I blame Congress,” Burnett said. “You sent us over there. You should at least look into it and simplify the procedure.”