(Anonymous)
Notes of a Paxil guinea pig
What does GSK owe to the youngsters in its infamous Study 329 who became suicidal while taking the company’s paroxetine (Paxil/Seroxat)?
As someone who was briefly a GSK Guinea Pig, I’d say the most important thing they’re owed is the truth. It’s a highly delinquent debt – but it’s not too late for GSK to pay up.
I took part in a study of Paxil back in 1994. Like many U.S. subjects, I signed up mainly for the free medical care: I was tired of battling my employer’s HMO which doled out mental health treatment with an eyedropper. However, having already taken Prozac with little or no effect, I was also as curious as anyone to find out if these drugs “worked” or not, according to Big Science. I was willing to be a guinea pig if it would lead to some answers.
The protocol was that everyone was put on Paxil for a number of weeks, after which half of us would be switched cold-turkey to placebos, the other half would continue on Paxil.
Supposedly, this would determine whether people with “recurrent depression” should stay on long-term Paxil maintenance therapy. Looking back, however, what the study really did was to produce drug-withdrawal distress, then interpret that as the original depression coming back. And most likely, by 1994, GSK knew that.
Treatment related injury?
After the switch to either placebo or Paxil I fell asleep at the wheel of my car and had an auto accident with minor injuries. I didn’t want to drop out – I was pretty sure the cause of my accident wasn’t Paxil, but working a sixteen-hour shift. But I was told the study protocol demanded my removal. Not knowing the research design, I never found out whether they were being conscientious, or just the opposite – dropping my results to cover up problems.
The Paxil hadn’t helped me much. But after the switch, I quickly felt the ground under my feet get rockier, at least for awhile.
Well, I thought, it didn’t feel like the Paxil was doing me any good – but here I was feeling worse without it. It didn’t occur to me that this could be down to Paxil withdrawal, because I had never heard of it.
Once the blind was broken, the researchers confirmed I had indeed been switched to placebo.
I never found out if my study was published. When I finally saw a psychiatrist, his reaction was that this had been a “pretty stupid study,” because “everyone already knew” that people like me who’d had several depressive spells should be on medication for life. That makes me think there were already multiple published studies of this type – and possibly dozens more that the drug companies never bothered to publish.
GSK & responsibility
I’m angry with GSK, not only for putting me through Paxil withdrawal, which, thank god, was not severe in my case, but also for what they later did to me and other patients by hiding the results. They and the other drug manufacturers led millions of us to believe we needed these drugs for life, “just like diabetics need insulin.”
At a minimum this deprived millions of people of a normal sex life, and may have numbed their ability to respond to life in other ways. Untold numbers of children have been exposed in utero. And I and millions of others became part of a twenty-year uncontrolled experiment on the long-term use of these drugs to control a “deficiency” that we may never have had.
Study 329
For the kids in Study 329 who became suicidal on Paxil, GSK’s deception may have done much worse. To this day, I’d bet some of them don’t know the role of the drug in their suicide attempt. Being “the kid who tried to hang himself at fourteen” affected how they saw themselves, to say nothing of how their families, schools and juvenile courts may have seen them. It’s long overdue – but not too late – to tell them that “what you did was not necessarily your own doing.”
Knowing the facts about the limited effectiveness of these drugs could also open doors for those who have not responded to them. For two decades we’ve been told we were a small minority whose condition, being Treatment Resistant, must be very grave indeed. That verdict led many to accept punishing multidrug treatments, ECT, or simply becoming resigned to a life of disability.
Like the kids in Study 329, we deserve the opportunity to rewrite the life story handed to us by well-meaning professionals acting under the influence of GSK.
GSK owes…
It’s not too late to learn something useful from the changes GSK put us all through. It might help us learn more about SSRI withdrawal and SSRI-induced agitation, including who suffers what effects and why. I have no idea what consent forms I signed 20 years ago, but I sure as hell never intended to give GSK the right to hide the results of the experiment they ran on me.
GSK owes me the truth. It owes at least as much to many others, like the kids in Study 329, who suffered far more than I did. To say nothing of the patients who never took part in research, but whose lives were altered by it nonetheless. It would have been infinitely better if they had owned up twenty years ago. But that’s no reason to write off the debt now.
A shocking read and I think you may praise yourself lucky to have escaped from this study with only minor damage.
I fully agree with you that GSK owns a lot to the victims of this trial and also to the millions who became addicted to PAxil/Seroxat (while literally writing in the lieaflet: “These pills are not addictive” and “Remember, you cannot get addicited to these pills”) and went through hell and beyond when trying to come off them.
Unfortunately, GSK has not shown any signs of having even a rudimentary form of a conscience. They literally played down all side- and discontinuation effects, bribed doctors as well as regulators and mad it virtually impossible to issue a complaint about Paxil/Seroxat.
All victims of suicide attempts or completed suicides after a withdrawal attempt were labeld as “depressed patients who did not want to take their medication for their depression”.
I think this is a crime which can only be compared to the Holocaust and the GSK officials resonsible for this are among the worst criminals of this planet. I think they will never express even the slightest fomr of regret, and a lifelong prison time, while being put on Paxil for the first 5 years and then cold-turkied off would be the only punishemnt for their crimes!
“just like diabetics need insulin.” yes this is what I was told by my Gp in 1997 after being on these drugs for 8 years . I came off in 2005 tapering over 3 months as instructed by the doc and here I am 8 years later and still suffering. The panic attacks I was treated for was nothing compared to withdrawl hell.!
What I simply don’t understand is why Doctors are still insisting on almost force-prescribing these medications and denying the very real and serious side effects they hold. They must be able to read what is currently known…..so what’s going on? They can’t all be in the pay of Pharma. So what is it?
Sorry you’re still struggling Ruth
Sir Andrew Witty is invited along to Desert Island Discs.
Q: What made you enter the world of pharmaceutical drugs?
A: I started young, I worked my way up to CEO.
Q: You did very well, you have a Knighthood.
A: Yes.
Q: I have heard that an experiment with young children, went very wrong, for your company. I also heard that the fall out from this experiment, which went, very wrong, went totally out of control, over many years, leading to many deaths, for children and adults.
A: Talk to my lawyers.
Q: Oh….Kay…..What is your first choice of record?
A: Rocket Man by Elton John
Q: Oh….Kay…..what is your Luxury item:
A: Bucketfuls of data on Paxil Study 329, and, a, spade.
Q: Oh…..Kay…..what is your book?
A: The Secret Diaries of Glaxosmithkline
In the UK, we love our quintessential British humour.
Call my Bluff, Sorry, I haven’t a Clue, Just a Minute….repetition, of the word, safe…..
Britain really has *Got Talent*.
I was going to write about the *perfect crime*, but Gotzsche, who is not gauche, and not backward in coming forward, said it all in his recent address to the world:
http://www.youtube.com/watch?v=i1LQiow_ZIQ
Spectaculaaaaaaar…
And, us guinea pigs, in trials, or not in trials, are still being injured………?
Come on mate, get a grip, what the hell do you think you are doing?
The Global Clinical tria Seroxat of took place after the drug was licensed and made available on prescription! For some it is ongoing…
And the “Global Clinical Trial” does not involve record keeping, accountability, regulation etc. Harmful side effects including suicide are now simply filed under “anecdotes”
Also, if the SSRI trials for Prozac, Sertraline and Paroxetine were only a few weeks long, than surely patients like myself, many of us ,who were made to stay on them for years, are also guinea pigs. Doesn’t that turn it into something far more sinister ie in respect of using mental health patients for what amounts to non-concensual experimentation?
I’m a ‘survivor’ from Derbyshire, this is the tip of the iceberg.
Thanks for the article, you are entitled to the truth.
And thanks to David Healy and colleagues for the RiAT study.
The families of the dead are owed an explanation and compensation; millions also to each who endured and survived no warning serious adverse effects. And no warning regarding physical dependency on ineffective drug and class of drugs which would only causing their young still developing brains more and more harm – but too debilitating or dangerous to get off.
But for the cover up on Seroxat Seroxat would never have been taken and but for Seroxat no follow up Seroxat or drugs of the same class would have been prescribed for am initial transient period in people’s lives.
Beyond the horrific suffering, the effects of misdiagnosis and the effects of being disbelieved, they must be compensated for the isolation, the lack of help or support; for the consequent loss of their health, their careers, their relationships, their social lives; for all the years of their lives an initial prescription for Seroxat ruined and would go on to ruin with its legacy- and as GSK could have reasonably foreseen if it was not GSK’ s intention to create dangerous and ineffective defective products patients would remain physically dependent on.
Many well educated, employed, hard working, ambitious, and previously generally happy victims like myself then more and more unable to work; for some perhaps also owing to the further physical, mental and cognitive legacy symptoms and complications. PTSD post fears of a threat to their lives, or an enduring stress syndrome. High to low level akathisia. Permanent stomach/bowel problems PSSD. Cognitive and memory problems. Neurological problems.
What was done to them or their loved ones and all the costs, grief and loss just so much and so shocking for many perhaps it’s all still too hard to fully process. And the longer term consequences even as too many, so young, so heathy previously, discover themselves on Disability. What was done and under a healthcare institution which wishes to have the rights of personhood, was nothing short of criminal and evil. And then the guinea pigs, until Rxisk and RIAT arrived, were hung out to dry.