Veterans talk about lasting impacts of ‘guinea pig’ drug trials in Timor

11 Oct 2016

News,com.au  Reporter – Rohan Smith 6th October 2016

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Chris Stiles took his own life in August after a years-long battle with mental illness after taking Mefloquine

THEY call it the “suicide pill” for a reason.
Those who take it claim to suffer horrific side effects including hallucinations, depression, anxiety, nightmares and thoughts of ending their own lives.
During the early 2000s it was effectively forced down the throats of Australian Defence Force personnel as a prevention for malaria. The problem was that those administering the treatment — and those taking it — didn’t properly understand the risks. And saying no was not an option.
The drug is Mefloquine, otherwise known as Lariam, and it has been linked to a number of suicides among veterans, one as recent as August.
Those who survived say they were the lucky ones, but luck is subjective. They still live with the demons that arrived shortly after their first dose and never left.
On Thursday, after the ADF absolved itself of responsibility, survivors spoke with news.com.au about their experiences. Their stories paint a picture of lasting pain and frustration.

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Colonel Ray Martin is standing up for soldiers who have suffered because of an anti-malaria drug trial in the early 2000s.

‘TAKING MEFLOQUINE IS LIKE PLAYING RUSSIAN ROULETTE’
After a year-long inquiry into claims soldiers were “guinea pigs” for a drug manufacturer, the Defence Force claimed no responsibility for ongoing ill effects, despite admitting the drug “is associated with neuropsychiatric side-effects that, in rare cases, may become permanent”.
The ADF reviewed trials of the drug between 2000 and 2002 on soldiers serving in East Timor.

The final report was based on interviews with 21 witnesses and findings by internal experts only, critics say. It determined “there were very few severe adverse events”.
But a number of former diggers and their families told news.com.au the opposite. They said they either personally took the drug or had a family member take it. They said friends — soldiers who took the drug — ended their lives because of the dark thoughts circling inside their heads.
The wife of a soldier who was given a “loading dose” — three times the normal amount — before his tour of East Timor said her husband has dreams to this day about locals telling him to kill himself.
One former soldier, who did not wish to be named, called the ADF report a sham and a waste of time.
“The ADF were never going to find themselves guilty of coercion in a human drug trial,” he said.
“I was affected by Mefloquine but didn’t make a submission to the inquiry because I believed it to be a waste of time. I was right.”
A former Colonel, Ray Martin, who is the most senior soldier to speak out against his former employer, said his friend recently suicided after years of unanswered cries for help.
He said giving Mefloquine to soldiers was “a bit like Russian roulette”.
“It’s the luck of the draw. For some people it doesn’t do anything (negative), but if you’re predisposed to mental illness, one pill can damage you and have a lasting effect.”

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Lavina Salter says the ADF essentially called her husband a liar

THOUSANDS OF SOLDIERS TOOK PART
It’s still not clear exactly how many soldiers are suffering from using the drug. Part of the reason for that is the symptoms of Mefloquine toxicity are similar to those of post traumatic stress disorder.
Col. Martin, who now helps dozens of sufferers from his home in Townsville, says there could be as many as 500, but even if there’s 50 that’s too many.
He says around 5000 diggers signed a consent form prior to travelling to Timor and different reports suggest anywhere between 10 and 30 per cent could be experiencing adverse reactions.
“If it’s 10 per cent of 5000 that’s way too many. Drug manufacturers say it’s 1 per cent. Even 1 per cent is 50 people at grave risk.”
One of those people is Chris Salter. He lives every day with anxiety and suicidal thoughts. They started almost immediately after his second trip to Timor in September, 2001, when he signed the form and allowed doctors to put him on Lariam.
His wife, Lavina, told news.com.au her husband has never been the same.
“He had three tablets over five days,” she said. “He suffers really bad memory issues and unfortunately only remembers bits and pieces (of the tours).
“He started getting really bad insomnia, then when he did sleep he dreamt about East Timorese people telling him to kill himself. At the time he was hallucinating and had visions and progressively over the years the anxiety and the psychosis has come along.”
Mr Salter’s case is the first public case the ADF has accepted responsibility for. He was administered the drug despite a history of depression, something doctors acknowledge should never have happened.
Mrs Salter quit her job to care for her husband full time. She calls herself his “security blanket” but there’s only so much she can do.
She said he was devastated when the ADF handed down its findings. He’s not alone.
“You have no idea how many (former soldiers) are so angry about this. For a lot of the guys, it’s shit because they’re made out now to be liars.”
She said they don’t care so much about acknowledgment but they do need help.
“These guys just want to live somewhere close to a normal life.”

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ADF personnel who served in East Timor were placed on a trial of Mefloquine, a drug to treat and prevent malaria. The results are still being felt today.

‘THEY WERE HANDING THEM OUT LIKE LOLLIES’
Colin McIntosh was an Air Force officer in Timor for seven months in 2002. He deployed with another anti-malarial drug, Doxycycline, but upon running out, was handed another pill.
He says he never signed a form and was not part of the Mefloquine trial, but he definitely took one tablet a week for six months. The effects were almost immediate.
“It manifested with binge drinking and I don’t hide that, but I got vertigo, a strange vertigo.
“I would be driving in a straight line and when a corner came up I would grip the wheel in terror trying to turn the corner. I couldn’t walk down the street without being near a wall. I was terrified of walking down stairs.”
It was a huge change for an officer who jumped from helicopters and feared nothing. He said the nightmares started shortly after taking Mefloquine, too.
“I’ve fought every snake, every bear (in my dreams). I’ve thrown myself out of bed to escape. They’re not as dark anymore but they’re still incredibly vivid.”
Mr McIntosh said Mefloquine was “handed out like lollies in East Timor”. He can’t understand why a trial would begin in — of all places — a warzone.
“Timor was the biggest deployment since Vietnam and some idiot thought he would trial a drug there. You don’t trial something in a warzone. You test guns, tanks, whatever, five years before you deploy and somebody thought it would be a smart idea to trial a drug there.”
He said he considers himself one of the lucky ones and that he does believe the brain recovers.
“I will not whinge as several hundred other military members throughout the world have paid the ultimate price for using this drug.”

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Lariam was given to soldiers once a week in Timor as part of a mass trial.

NEUROSCIENTIST LABELS FINDINGS ‘WOEFUL’
Dr Jane Quinn has studied the drug since losing somebody close to her as a result of exposure to Lariam. She now works as a scientific adviser to the Australian Quinoline Veterans and Families Association.
The lecturer from Charles Sturt University told news.com.au the ADF report was “woeful”. She is demanding an external inquiry.
“They took no external expert opinion whatsoever. They interviewed soldiers who were present in Timor and the people who were running the trials. They don’t seem to have interviewed anybody else.
“It’s a ‘he said, she said’ situation. I think that’s a significant problem.”
Dr Quinn is critical of the way the trials were administered. She said a culture within the Defence Force prevented soldiers from questioning the trial, even if they felt uneasy at the time.
“There was a requirement for a large proportion of troops to participate in order for the trial to be valid. There was a very strong encouragement for soldiers to participate. The term ‘strongly encourage’ in the military is really just semantics for a direct order.”
A friend and former colleague of Col. Martin’s — Chris Stiles — took his own life in August after asking for help.
“There’s no doubt people here have taken their own lives because of this,” he said.
“Others have tried, many families have been destroyed, people are in prison, or have threatened violence against others.”
Col. Martin does not blame commanding officers who took the drugs alongside soldiers and whose job it was to encourage personnel to join trials.
“The information they were given was insufficient. The risks were underplayed. I don’t know any commanding officer who would’ve put his troops at risk.”
He says what happens next is hugely important.
“Those who are affected are fighting for support, for diagnosis, for help.
“The DVA is saying that help is being given but that’s not true. The first step should be recognising the problem — saying ‘there is a problem we see the problem, we understand that people need help’. They’re not even doing that.”

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Lisa Alward, the sister of Chris Stiles, holds a photograph of her brother. Chris took his own life after being exposed to Mefloquine in Timor

A Defence spokesman told news.com.au the ADF report was impartial.
“The Inspector-General Australian Defence Force (IGADF) is an independent statutory authority, separate to the Australian Defence Force (ADF) chain of command,” he said.
“The IGADF is an important mechanism through which possible failures in the military justice system can be examined. Previous inquiry reports have, where appropriate, been quite critical of the ADF which is testament to the impartiality of the IGADF.”
The spokesman said the inquiry found “no serious issues with information in consent forms and the “information provided in each trial was consistent with the known side effects of mefloquine as set out in the 1998 consumer medicine information for Lariam™”.
The ADF does accept that Mefloquine is associated with sometimes-permanent neuropsychiatric side-effects but a spokesman said it is “only prescribed by Defence as a third line agent when other anti-malarial medications are unsuitable”.
The Defence spokesman said any death by suicide is “tragic” and “the factors that contribute to someone dying by suicide are often complex”.
“Support is available to those who need it. Anyone who believes they, or someone they know, may be suffering should reach out and seek that support.”
For support and information about suicide prevention, call Lifeline on 13 11 14.

The Defence All-hours Support Line (ASL), a confidential telephone service for ADF members and their families, is available 24 hours a day, seven days a week on 1800 628 036.
Crisis support and confidential counselling is also available by calling the Veterans and Veterans Families Counselling Service (VVCS) on 1800 011 046.