Another fight of his life for Vietnam vet
Marine has dedicated his days to helping the needy
Ken Williams, who grew up in La Mirada, saved the draft board the cost of a stamp.
“I volunteered,” he said. “I was raised to serve our country. You didn’t question it.”
He went to Vietnam with the 9th Marines in 1969, saw action and made it home considerably less gung-ho about the war. That’s when he made a commitment to social work, particularly in the service of struggling veterans and those with mental health issues.
That’s how I met him. In 2009, Williams was a county social worker and kept a journal of homeless people who had died on the streets of Santa Barbara. The count was up to 18 in August of that year. Williams had gone from fighting an enemy in Vietnam to fighting indifference as the body count rose in the affluent seaside city.
Williams, 67, was a heroic, outspobeen ken critic of half-hearted government efforts and the treatment of poverty as a nuisance. I accompanied him on his rounds, and I read his powerful, often poetic prose as a correspondent for Noozhawk. He retired five years ago after 35 years in social work to focus full time on writing. And then he got sick. The warrior, stricken with blood cancer, had another battle on his hands, this time with the Veterans Affairs bureaucracy.
His own research and the opinions of three doctors convinced him his illness was linked to his exposure to Agent Orange and napalm in Vietnam.
He recalls being very near a napalm drop in the A Shau Valley, and on his next mission, in Con Thien, he and his fellow Marines watched planes drop sheets of Agent Orange over nearby fields. Williams and his mates later swept through those fields in tanks.
“The tank to my immediate left blew up. It was perpendicular to the ground, and a Marine came flying out of the dust past me,” Williams said. “All we could think of was that we’d hit in an ambush, and we got down to form a perimeter. There was paddy water, and we were so thirsty we started drinking it. But there was an oily film on top of it.”
The VA denied Williams’ claim that his illness was linked to his service, and he was refused disability payments. And that, as thousands of vets know, is not uncommon.
It’s scientifically problematic to tie a disease to a cause. But the VA has frequently used a controversial consultant who insisted that relatively few vets were exposed to chemicals, and even then, he said, the doses were too small to cause harm. Earlier this year, a VA official said renewed attention to Agent Orange was the result of media “hype” and “hysteria.”
John Rowan, president of the Vietnam Veterans of America, said he thinks this is all about money.
“They don’t want to pay,” said Rowan, who spoke by phone from his car as he headed to Washington, D.C., to celebrate Veterans Day.
“For years, we’ve been constantly battling these things,” said Rowan,
who himself spent years fighting for disability payments for his diabetes, neuropathy and other diseases.
Dr. Jeanne Stellman, a Columbia University professor emerita who has studied herbicide exposure in Vietnam, said the VA has never funded major scientific research on the impacts.
Dr. Linda S. Birnbaum, director of the National Institute of Environmental Health Sciences, told me the VA “has made it very difficult for veterans to get treatment and compensation.”
But Ken Williams, true to his personality, wouldn’t take no for an answer. He appealed the VA’s denials and won temporary full disability, then kept up the fight for an additional year or more before being granted permanent full disability.
That, however, was not the end of his problems. His health deteriorated, and his primary myelofibrosis evolved into acute myeloid leukemia.
“Ken is determined that Vietnam will not have the final word in his life’s journey,” Ken and his wife, Donna, said in an earlyOctober email in which they announced he would be hospitalized for several weeks of chemotherapy, which, if successful, might be followed by a bone marrow transplant.
But the chemotherapy did not check the disease. And the news kept getting worse.
“Apparently my leukemia cells have a mutation that fights the anti-cancer drugs,” Williams said Wednesday in an email from Stanford hospital. “Good news is that there is a targeted therapy for this mutation. Bad news is that the insurance, Medicare, has denied me this life-saving drug…. As you can guess, I have mixed feelings towards a holiday that celebrates veterans, yet here I sit in a hospital bed because I can’t get the medicine that I need.”
Dr. Jason Gotlib, Williams’ hematologist, was disappointed by the rejection. He said he’s seen hundreds of patients who have the same disease but had no exposure to Agent Orange or napalm, and he doesn’t know if there was or wasn’t a link in Williams’ case.
But he said a combination of two drugs, including Venclexta — the drug Medicare denied coverage for — is the next logical treatment for Williams, and there’s evidence it has worked for others.
Gotlib appealed Medicare’s decision. Same result. He appealed again, arguing that medical data was on his side and that Williams was “in dire straits.”
Medicare wouldn’t budge.
“Essentially,” Williams said dejectedly, “they’re saying it’s an experimental drug.”
The Williamses now live in Cambria, and Donna tried to get help through the office of their congressional representative. Gotlib’s team, meanwhile, appealed directly to Genentech, which makes the denied drug.
Ken Williams worried, meanwhile, that time was running out. We talked about whether the drug might be covered if he transferred to a VA hospital, and whether it would be possible for him to buy the drug. But he was under the impression that it would be way too expensive.
When I checked back with him Thursday evening, his tone had changed.
“They approved it,” he said.
Genentech told me it does not comment on individual patient cases, but that “we are committed to ensuring that our medicines get to the people who need them, even if they can’t afford them.”
Williams has been through three years of cancer, pneumonia, a staph infection and a lung biopsy. He was physically and emotionally drained, and he has more battles ahead, with the new drug treatment scheduled to begin Tuesday and take three weeks.
But he has a fighting chance.
‘As you can guess, I have mixed feelings towards a holiday that celebrates veterans, yet here I sit in a hospital bed because I can’t get the medicine that I need.’ — Ken Williams, Vietnam veteran, who has developed acute myeloid leukemia, on Veterans Day