Veterans are disheartened by a Senate inquiry into anti-malarial drug trials they say have left them with debilitating symptoms for nearly 20 years.

Australian Defence Force personnel took quinoline drugs mefloquine and tafenoquine while deployed to Timor-Leste and Bougainville in Papua New Guinea between 1999 and 2002.

A Senate inquiry this year heard from veterans who have since suffered a range of symptoms including memory loss, vertigo, migraines, vivid nightmares, hearing and vision loss, irritable bowel syndrome, aggression and suicidal thoughts.

Most have been diagnosed with post-traumatic stress disorder but believe they actually have acquired brain injuries from toxicity and need rehabilitation.

They struggle to access the help they want from the Department of Veterans Affairs (DVA) because it doesn’t match their diagnoses.

The Senate committee accepted their symptoms were genuine in its report tabled this week, but made no findings on the causes of the health issues.

“We’re basically back to square one again,” Colin Brock, who was deployed to Timor-Leste in 2000 and served for 20 years, told The New Daily on Wednesday.

“It’s pretty disheartening.

“The government has looked like they’re doing something but it has actually, I believe, been a whole waste of time.”

An internal inquiry into the mefloquine trial by the ADF Inspector-General in 2016 found it was carried out ethically and in accordance with national guidelines.

The Repatriation Medical Authority found there was insufficient evidence that exposure to the drugs causes acquired brain injury, a finding supported by a September review by the Specialist Medical Review Council.

Where to from here?

There was some welcome news from the Senate report, with a recommendation the DVA fast-track a neurocognitive health program.

The program is being co-designed with veterans and advocates, including Charles Sturt University neurotoxicologist Jane Quinn, whose husband Major Cameron Quinn of the British Army suicided five years after taking mefloquine.

She was “very pleased” the report recommended prioritising the program.

“So far, we’ve just had a series of meetings,” said Associate Professor Quinn, the scientific adviser to the Australian Quinoline Veterans and Families Association (QVFA).

“I’m confident we’ll see significant progress now, but I’m also cautious that it has been a struggle to this point.”

Mr Brock was less sure it would be achieved.

“I’ll believe it when I see it,” he said.

Scott McCormick, who took mefloquine while serving in Timor-Leste in 2001, pointed out there had been five ministers for Veterans Affairs since the Coalition government was elected in 2013.

“We have hope in the DVA pilot program but we’re at the mercy of a new DVA minister every year, and possibly a changing government.”

Minister Darren Chester was generally considered helpful and supportive.

QVFA president Stuart McCarthy used both tafenoquine and mefloquine in separate deployments in his 28 years of service.

He is also working on the neurocognitive health program and welcomed the recommendation to prioritise it, but was disappointed with the report overall.

What the veterans wanted

Most of the affected veterans wanted a royal commission, for GPs to be informed about the trials and, importantly, for every one of them to receive gold cards to help them access treatments.

“What that would mean is that we wouldn’t have this current scenario where people have been extremely unwell with various issues – a whole range of serious neurological and other disorders – are then put through this crazy bureaucratic process to prove those illnesses were caused by their service,” Mr McCarthy said.

The area of operations in Batugade, Timor-Leste, during Ms Baker’s service. Photo: Anne-Maree Baker

Anne-Maree Baker, who served for 16 years and was the fourth generation in her family to do so, said she has “been on a roundabout with GPs for 18 years”.

She says she has 35 ailments after taking part in a seven-month mefloquine trial in Timor-Leste, and is “pretty pissed off”.

“I’m only 47 mate … I feel like I’m in my mid-60s the amount of pain I’m in,” Ms Baker told The New Daily.

“Take your medals back and give me my health back.

All these generals and politicians love going to Gallipoli and paying homage to the dead, is that because those soldiers can’t argue back?”

The Department of Defence said mefloquine, which is registered by the Therapeutic Goods Administration (TGA), is prescribed to about 10,000 Australians a year.

The ADF uses mefloquine as its third anti-malarial option.

The TGA is considering tafenoquine for registration. Defence will consider using if it becomes registered.

The department said there were 637 cases of malaria recorded in ADF members between 1998 and 2007. Between 2012 and 2017 there were just 30 cases.

The inquiry

Some veterans gave evidence they were told they would not be deployed if they didn’t take part in the trial.

Defence said all participants provided informed consent and took part in the trial voluntarily.

One of the Senate committee’s 14 recommendations was to strengthen the ability of servicemen and women to get information and advice before consenting to any future trials.

Mr Chester said the government would carefully consider the recommendations and respond early next year.

DVA recently hosted consultation forums across the country.

“The government has listened to ADF members, veterans and their families,” Mr Chester said in a statement.

Contact the DVA’s mefloquine hotline on 1800 633 567.

Open Arms Veterans and Families Counselling can be contacted 24/7 on 1800 011 046.

If you need help, call Lifeline, 13 11 14.