Many of the drug trial guinea pigs, myself included, are now suffering a myriad of permanent health issues, that is of course, if they haven’t already committed suicide. According to the drug companies, and the ADF, the ever-increasing number of veteran suicides amongst those who participated in the drug trails are definitely not a direct result of either Tafenoquine or Mefloquine. Not only do they deny these figures, which can be traced back to the drug trials, but they refuse point blank to talk to veterans or their families about their suffering. They are not interested in reviewing their data, following up with drug trial participants to gauge long-term effects or even just checking to see how many are still alive. Of course, they are happy to remain oblivious and ignorant because the facts, if they actually started digging, would be mind-blowing. The drug company uses the excuse that it doesn’t undertake long term studies. What they don’t want is long term results that will show them exactly the effects their drug is having on the people it was then, and is now, prescribed to which would result in them facing both financial ruin and criminal recourse.
You see, this isn’t the first time or the last time that drug trials have gone horribly wrong causing participants a lifetime of health problems or worse.
In 2006 when Rob Oldfield signed up for a drugs trial at Northwick Park Hospital in the UK, he thought he had found a way to earn some easy money and do his bit for medical science. But the trial went disastrously wrong, leaving him and five other healthy men fighting for their lives. He was taking part in the first human trial of what was known as TGN1412, a drug that manipulated the immune system. But within minutes of having the drug administered, all of the test subjects began feeling unwell. "I was injected at about 8am," says Oldfield. "Around midnight I was taken to intensive care." He didn't know it was dangerous and he had no idea it altered the immune system even though he signed an eleven-page consent form that apparently listed the risks involved. TGN1412 had a catastrophic effect on the six men's bodies. Headaches and chills rapidly gave way to vomiting, severe pain and shortness of breath. Swollen tissue, plummeting blood pressure and multiple organ failure followed. One by one, all six were transferred to intensive care. While none of the men died Rob was one of the lucky ones and only suffers from ongoing immune system issues. https://www.bbc.com/news/magazine-35766627
In January 2016, the French company Biotrial recruited 128 healthy volunteers to take part in a clinical trial of a new drug designed to combat anxiety related to cancer and Parkinson’s disease. Under the influence of small doses of the drug, the patients reported no side effects. But when the doses began to escalate after the first week, problems started to surface. In particular, six of the participants became sick and were immediately sent to the ER. One of these patients, a healthy man in his late 20s, was declared brain dead just one week after being admitted to the hospital and two weeks after starting the trial. The five other patients remained in a stable condition, but doctors predicted that many would have suffered irreversible brain damage and mental handicaps. Even though this was the first time the drug had been tested on humans, the trial administrators knew that there were serious issues with the drug. One French news source uncovered a pre-trial that had similar effects on dogs, killing several and leaving others with brain damage. Yet the trial was still conducted on humans, and with horrible results. https://www.sciencemag.org/…/french-company-bungled-clinica…
Mary Weiss’ son Dan died almost five years ago in a clinical study at the University of Minnesota, a study he lacked any diagnosis for, and a study that she tried unsuccessfully to get him out of for five months. Ever since her son’s untimely death, Mary Weiss has been trying to spread this message to the world. In 2003, her delusional son, Dan Markingson, was diagnosed with schizophrenia and admitted to the University of Minnesota Medical Center in Fairview. Shortly after, he was put into a clinical trial testing three different types of schizophrenia medications: Seroquel, Risperdal, and Zyprexa. But very quickly, his daily 800mg doses of Seroquel started to worsen his delusions. In response, his mother frantically sent letters, emails, and called the study coordinators to try and take her son out of the program. But the administration banned Dan from leaving the study, threatening to put him into a mental facility if he tried to drop out. Weiss was shocked by this until she learned a key fact about the program: her son’s participation was worth $15,000 to the school. Unable to leave the program, Markingson’s delusions became worse until he eventually committed suicide by stabbing himself to death in the shower. Devastated, his mother sued the school, which refused to take responsibility for its actions. Markingson was one of five trial subjects to attempt suicide, and one of two who succeeded in taking their own lives. Did I mention that this drug trial was conducted by AstraZeneca, the company that PM Scott Morrison is financially backing to develop and distribute the Australian CoViD-19 vaccine. https://www.motherjones.com/…/dan-markingson-drug-trial-as…/
How are you feeling about taking an experimental drug now? Are you feeling more confident in the ability of drug companies and government departments to dictate the best medical treatment for you and your family? But hey, these poor people were complete strangers and who knows if the reports got the stories right. So, let me continue MY drug trial story;
On my return from East Timor in April 2001 I applied for and was granted three months leave. This was no holiday though, I just needed to get away. I didn’t want to be around anyone. I wanted to be alone as much as possible but at the same time I didn’t know what to do with myself.
In 1998 I had started buying run-down properties as investments for when I got out of the army. I worked at Lavarack Barracks during the week and would spend my nights and weekends renovating the properties. So, I bought a rundown unit in Currajong and spent over twelve hours a day, seven days a week renovating it. I was now in the most hyperactive and manic state I had ever been in. It was like my mitochondria had gone into overdrive. This was the direct opposite of how I was in East Timor when all I wanted to do was sleep and had no energy. Now, I couldn’t sit still or relax.
My mind was scattered. I made rash decisions. I didn’t think things through in my normal, fully contemplative, logical process, everything was a snap decision and it was then implemented immediately. My most prized possession at the time was my classic, 1977 A9X Torana. She was my pride and joy and one of only 200 four door models made. One day I just up and sold the car. To this day I still don’t know why!
At night I couldn’t sleep. I would wake up, every hour on the hour, study the clock for what seemed like an eternity while I tried to work out if I was supposed to be getting up or staying in bed. This was not just an occasional occurrence but Every! Single! Night! every hour, on the hour. Some nights I’d get up at 3am and start getting ready for work. Add to this the fact that I couldn’t even attempt sleep unless I went for my normal 1.5hr run up and around Castle Hill and Northward. I had an overabundance of energy I just couldn’t use up. Sounds great doesn’t it? It was ok, for a time. For a long while I just did it because it had become my “normal”. I was single, lived in a unit by myself so my behaviour didn’t bother anyone and when it doesn’t bother anyone you don’t realise how abnormal what you are doing actually is.
My sleep issues continued to degenerate. By the time I started dating my now-husband Al, I was having night terrors maybe I had them before and just didn’t notice. Twenty years later and I still have night terrors. Al tells me every time it happens as I don’t always remember. Sometimes I see the scratch marks on the walls next to my bed or wake up on soaking wet sheets and can remember the night before but it doesn’t happen often.
A while after I returned to work, I was placed in command of a forward repair team (kind of like RACQ). Two mechanics and I would travel to the transport yard and work our butts off to get an entire yard of trucks back in service. During that time, I was put on a subject course which consisted of days sitting in front of a computer reading page after page of notes. Not a problem as I had done this numerous times before. Within a very short time I realised I couldn’t focus, understand or retain any of the information I was reading. I became frustrated and angry as the other students were given leave from their normal duties while I had to continue to manage the FRT repairs as well as complete my studies. To this day I have to read everything numerous times before I can understand what I am trying to digest. What I do understand though is that I wasn't like this before the drug trial.
I asked for time off to study and it was denied so I just withdrew from the course. “What is wrong with me?” I wondered. I felt like such a failure.
I continued running the FRT. Hands on work, up to my elbows in grease and truck parts was my happy place. I received an Australia Day Medallion for the level of work the FRT team achieved and my Captain (an ex-infantry Sargent) nominated me for a Soldier’s Medallion. I was working hard, enjoying my job and hitting goals at work but something was just not right.
I had joined the Army as a career and prior to my deployment had planned to work and study to progress through the ranks. I was fully committed to the Army for life. By late 2002 I was desperately trying to get OUT of the army.
The paranoia that had begun in Timor was still there and playing havoc with my mind. By now I thought everyone was out to get me, trying to get me in trouble, picking at me over the smallest of things… but in hindsight none of this was probably happening I was just being completely paranoid and my mind was to blame. Whilst I didn’t realise it at the time, I was also suffering major and constant anxiety. I recall now a number of times where people had actually suggested or intimated that I was seemingly anxious. Unfortunately, I didn’t understand what they were trying to say probably because you don’t realise it yourself at the time.
I was due for posting and requested a posting to 5 Aviation as I thought that maybe I just needed a change. A number of work colleagues warned me, they told me I wouldn’t like it, but what would they know. With my paranoia in full swing I disregarded everything they had to say and accepted the posting.
At the start of 2003 I was posted to 5 Aviation, a fresh start, something new. Within a short period of time I was bored out of my brain. There was hardly anything to fix and everyone seemed happy to just sit around and chat waiting for work to come in. I went out and found things to fix, jobs to do as I couldn’t sit still. My anxiety and paranoia increase exponentially as I believed that my behaviour bothered others and more people seemed to be picking at me.
One day a friend who owned a small business in town called me and said, “My business is for sale, I heard you might be interested in it”. I agreed to buy it on the spot. Who does that? Who buys a business without negotiating a deal. Another rash decision and again so out of character for the pre-deployment me who would never make a decision without a thorough investigation, risk analysis and forward planning.
In April 2003 I was allowed to discharged from the ADF and was free. I was starting a new chapter in my life, completely changing direction and I foolishly thought that things would be less stressful (lol). I was now a business owner – admittedly an anxious, paranoid, frustrated, angry workaholic business owner but a business owner none the less.
The problem was that as the years passed my health continued to decline. My inability to sleep and night terrors worsened, my paranoia was overwhelming and I was constantly anxious. The difference was that now I realised it. Enough people had pointed it out to me and I could feel it, I recognised that the way I was feeling and behaving was not normal and it was impacting both my personal and professional life. The pendulum had also swung back and I was starting to suffer even worse fatigue than I had in East Timor. Maybe I had finally worn my poor little mitochondria out. Maybe it was adrenal fatigue from constantly expecting the worse and the constant cortisol rushes? I now found it almost impossible to get out of bed in the morning. I could barely function during the day, I was always angry, snapping, raging, sometimes depressed, always bone-deep exhausted physically and mentally.
This was not living— full blown panic attacks and suicidal thoughts began to be more prevalent as I continued to spiral out of control. Friendships fell away as I avoided people and places, gave excuse after excuse when invitations to socialise were extended until there were no more invitations. Why am I here? Why am I bothering? What is the point? Why not just end it all? These questions were on a constant loop inside my head.
Many things have happened in my 17 years as a small business owner. Many ups and downs some caused by my health, others caused by the economy. Attacks by the TGA (Therapeutic Goods Administration) have always been a feature, who knew they hated natural therapies with such a passion, but that’s a story for another time.
By 2018 I’d heard about the Tafenoquine drug trial in the news, and said to my husband, “I was on that”. After some investigation, a lot of reading, and forcing myself to contact some old ADF friends, the penny dropped and it all became crystal clear. How did I forget I was on that drug trial and how did I not join the dots?
It was freeing in a way to realise what had caused this, even if the ADF denies it. But I knew, the vets knew, their families and friends knew. It was no coincidence, the odds that we could all have exactly the same health issues, in the same timeframe and it not be caused by the drug trial (the only constant for every single one of us) did not even warrant contemplating. The excitement was incredible but was closely followed by waves of depression when we realised, the ADF and the drug company didn’t want to know and they didn’t want to help. The same organisation that we were prepared to put our lives on the line for, to bleed for, to die for, didn’t want to know us. A group of veterans from the drug trials persisted in trying to get help for their brothers and sisters in arms who were suffering the most. Denied at every turn!
In late 2018 enough cages had been rattled that a Senate inquiry was called to investigate the drug trial. At the same time Tafenoquine was in the final process of being registered with the TGA as safe to be prescribed to the general public using the flawed results from the drug trial that I had participated in. A number of affected veterans and I started filling out adverse reaction forms and flooded the TGA in an effort to stop the approval but it was unstoppable. Too much money was at stake, too many reputations were on the line and too many deals had been done.
So here we are at the end of 2018. What has happened over the past two years? Guess you will have to come back tomorrow for the final instalment of My Life as a Drug Trial Guinea Pig 😊