How Being a Drug Trial Guinea Pig Changed My Life – Part 2

( Read Part one here
Welcome back. Thank you for the overwhelming support for part one of my story which I posted yesterday. It is hard and emotionally draining to not only relive this time in my life but to know that I am laying myself bare and sharing with you what has always been a very private story. Whilst I have never shied away from admitting I was part of these trials, and more recently, for standing up to support veterans and their families’ calls for a Royal Commission, I have not talked about the process, the treatment or the physical and mental damage that was done to me. My decision to stand as a candidate for IMOP stems directly from the horrific experience I endured then and have been living with for the past 20 years. It is my overwhelming desire to not only ensure that next time, and that time is bearing down fast, I do have the freedom to make a choice, that I am given all the information up front and I am not bullied or coerced into making a decision that I am not comfortable with. But more importantly, I want to ensure that no other person is mandated to have any sort of medical treatment forced upon them without knowing what it contains and all possible side-effects – short and long term. This is NOT being anti-vaxx this is fighting for freedom of choice in medical decision making.
What surprises me is why serving ADF members were chosen to be the guinea pigs when it was obvious from earlier trials that psychological side-effects were so severe. You see, no-one talks about anxiety, depression and suicidal thoughts in the defence force, not if you want to keep your job anyway. From the time you enter the enlistment process you are psychologically tested to “determine whether you can cope with the pressures of the military and whether your values are compatible with those of the military” (taken from ADF recruitment website). I have so many questions …..
How can the side effects noted on the trial documents be accurate if the environment that the guinea pigs, live, breath and work in, doesn’t allow for said guinea pigs to freely give that info without the consequences of perceived job loss, social stigma, ridiculing/harrassment by officers and overwhelming feelings of personal failure? All things that I experienced personally as part of my involvement. Is that the best environment for a drug trial?
When the guinea pigs are threatened with exclusion from participating in what they have trained for and worked towards, like veteran Greg who stated in his Senate Committee Enquiry submission #52, “In 2001 I again deployed to East Timor, I was involved with 2RAR’s mefloquine trials for the full deployed duration, I was told that if I didn't take part in the trails that I would not deploy with the battalion and was subsequently told to just take the medication” Is THIS truly informed consent?
Why does the government feel it necessary for their defence force to have an organisation called the Australian Defence Force [ADF] Malaria and Infectious Diseases Institute (formerly the Army Malaria Institute) which in turn has access to thousands of “un”willing subjects upon which to conduct Phase III and IV drug trials? My trial was a Phase III trial which the ADFMID states “are done to study the efficacy of a medication in large groups of trial participants by comparing the intervention to other standard or experimental medications. Phase III studies are also used to monitor adverse effects and to collect information that will allow the medication to be used safely”. The pressure on ADF guinea pigs such as myself was overwhelming and conflicting. The honesty and integrity of the soldier part of me, to tell the truth, battled with my personal fear of possibly losing the job I loved if I mentioned the psychological complications I was having.
What sort of conflict of interest could there be when the institute that is running the drug trial is an arm of the same organisation that the guinea pigs being tested are employed by? Can the parent organisation, the ADF, ensure that the environment in which the trials are conducted are optimal for positive outcomes? Over the years interesting snippets of information, many that I paid little or no attention to during my time in East Timor and just accepted as part of the job, it was, after all, my first deployment so I had nothing to reference actions or behaviours, have pecked away at my subconscious and, more recently, resurfaced following the work I have been undertaking on myself while battling, and winning, some of my personal health issues. If an organisation is testing the efficacy of an anti-malarial drug, for both safety and effectiveness, in a place obviously riddled with the disease would they not want to also leave their guinea pigs open to the possibility of contracting the disease? During my entire time in East Timor, we were not allowed to sit, work or even go to the gym unless we were in full cams with almost no skin exposed. We slept in mosquito domes and the entire compound was smoked twice daily with some unknown chemical in diesel fumes to kill mosquitoes. There was absolutely no chance of being bitten, in actual fact, I didn’t see or feel a single mosquito the entire time I was deployed – not a one!
I was part of the notorious Trial 033 which was the catalyst for the recent Senate Committee Enquiry!
Interestingly, my drug trial documents, which I now have a copy of, state that I am a male. There were other discrepancies in my, and other participants, documents but these did not seem to be important to researchers. It was the flawed findings from Trial 033 that was used to register Tafenoquine as a drug that is, ostensibly, safe to be prescribed by doctors. US firm, Linear Clinical Research, has recently been using Australian students, backpackers and unemployed living in and around Perth to trial a new anti-malarial drug which has since been identified as Tafenoquine.
In recent months I have listened in horror as they tout hydroxychloroquine, the same family of drug, as a cure for CoViD-19 and want to sell it as such over the counter. But hey, it’s a safe drug, the documentation from my drug trial says it is. Even Tafenoquine is being now pushed to be used for Covid.
Would you take it? Perhaps take the time to read some of the personal submissions made during the Senate Committee Enquiry before answering that question -
Whilst I originally started to share my story and thought I could do it in two parts I have realised that there is so much more to this than just what happened to me, and so many others, during my deployment.
Consider this – was I just unlucky to accidentally take part in the only corrupt drug trial in the world or do you think, perhaps, this happens more often than we know?
Stay tuned for Part III in the coming days when I dig deeper and share more about my personal journey over the past 20 years, the journeys of other veterans and the experiences of complete strangers who took part in other trials, for other drugs, by other research facilities.
VOTE 1 Toni McMahon
VOTE 1 IMOP at the QLD state election 31 Oct 2020
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