Dopamine Agonists and catastrophic Obsessive/Compulsive Disorders (2)

Blue Eyes

We've had this chat before. I find it difficult to understand why you think there is a problem with the pharmaceutical industry. I was part of it and don't particulaly like the implications.

It's too easy to accuse the pharmaceutical companies of profit related bias. In fact, legally and scientifically, it is very difficult for these organisations to 'get away' with lies or malice.

Cock up....yes...conspiracy...no!

I have worked in the pharmaceutical and medical world and have NEVER, personally, come across an example of deliberate tampering with statistics. (There has been some well documented examples but they are quite rare)

If the lawyers in charge of the group action can't make the facts strong enough to take to court, then there is no chance for individual action.

There are two parts of this thread. One is the legal action with the drug suppliers and the other, and far more important one, is to WARN the PD world of these problems.
The drug companies are well-protected in legal terms.
Requip XL states that OCDs are a "very rare side effect "affecting "more than 1 in 1000 people"
1 in 4 or 1 in 3 on higher doses is more than 1 in 1000!
Therefore warning is accurate, apart from 1 in 4 not really being a very rare side effect!
Clever aren't they? And immoral or amoral.
Poor at words, but great at figures! $$$
Hi Spam95,

I think you are confusing two separate sides of the same business? I am fully aware and generally agree scientists and research teams are doing what they believe to be in the patients interest at any given time. However in my opinion the same is not always true when it comes to senior management who control the purse strings and run these giant companies.

I never used words like "conspiracy" and "deliberate tampering", as you seem to be implying? The words i did use were "industry culture focused on profit growth", which is a fact if you look at the $$$$$ profit growth in the last decade. Secondly i accused them of a lack of openness and fairness when they do get things wrong. Clearly sometimes they will make mistakes or get it wrong? However in the last 20 years how many of those mistakes did they own up to, without the customer having to drag them through the courts.

Not actually a open culture is it?

I also disagree with your views regarding the class action outcome. I believe the evidence far from being insufficient was actually stacked against the drug companies! That's why they settled the class action law suit out of court. By doing this they would of avoided any risk of losing in court and opening the flood gates to thousands more lawsuits. Furthermore unlike many other countries, here in the UK suing a drug company for issues caused by medication side effects, is like suing a supermarket chain for a defective pack of batteries? In other words any claim is limited to losses or costs incurred up to the point you found out there was a problem. Things like punitive damages, future loss of earning etc etc don't even get a look in. In fact your own legal bill would more than likely be greater than any court settlement you get. So i suggest when given a choice between an out of court settlement from the drug company vs going to court, it is understandable most people will settle out of court. The drug companies know by settling out of court they remove any risk of further claims thus protecting profits at our expense.

I would not call that fairness!

Regards
bluey
We definitely live in an environment where the 'big boys' have most of the legal clout. It's been that way forever, and probably will never change.

It is unreasonable to think otherwise.

So, my advice is this. Don't tackle them from the front. You'll lose.

Why not try individual guerilla attacks. Write to the CEO and the company. Go and sit outside the main gate of the factory. Try and get a bit back for yourself. Make their lives as difficult as they have yours.

But I fear for a class action , full frontal charge. And so do the specialst lawyers involved.
Thanks for the advise Spam95.

I'm off now to buy a pair of handcuffs and chain myself to the railings outside the Offices of GalxoSmithKline......I may be gone a while!

regards
bluey
Ok, thought number 2!:bulb:

If..and when? i am advised by medical professionals to take a DA, i am going to write to the pharmaceutical company for their advice/recommendations on taking these drugs safely (recommended dosages = expected % side effect)and ask them to re-summarise possible side effects that i may suffer explaining to them i have read their % claims are inacurate and ask them upfront that if I experiemce anything in the higher % bracket than is expected from a lower dose then how will they address this for me and any other patient?
Maybe i will supply (or offer to supply) my medical records so they can't decline knowing my medical history.
Also i may ask them their recommendations of which DA to take and their reasons for this. Based on their products supplied.

I know they will endeavour to refer me back to my neuro but i will challenge their researched knowledge on their own products as being superior to a general neuologists.

What i expect to recieve is a closed reply to my questions yet hope their maybe an element of opportunity to throw open other lines of questions/inquiry? By doing this and regularly writing to them for answers/advice/up-date on my side effect experiences i will be building a portfolio of evidence for the future and lawyers should the need ever arise. :fearful:

Got to give these things a try haven't you???:grin:

Diane
Question, Which global industry has the biggest NET profit return on sales revenue

Answer, The Pharmaceutical industry at around 20% NET profit return, so for every £1 of sales they make 20p NET profit.

Compare this 20% NET profit return to other global industries,

Grocery 4%
Non food 3%
Car 2%
computer 8%
insurance 2%
Electrical 2%

The Pharmaceutical companies are by far making the biggest and most healthy profit margins on this planet. What a pity some of this profit could not be used to make there drugs safer and compensate victims when things go wrong.
Good point Blue Eyes

Can you refer me to the source of your data pleas

Thank you
My source?

Google search.......but dont tell anyone i told you.

You can do it by, Sales revenue's and NET profits or by industry or by top 1,000 companies or by top NET margin return on sales by industry and or company.....etc etc etc.

Simples.....:fearful:
As long as you were made aware of the possible side effects from taking dopamine agonists. I don't really see how you can sue the drug companies If the side-effects happen to you.

I take dopamine agonists, Mirapexin made me extremely ill so I had to stop. I am currently reducing the level of Requip that I am taking as it has given me visual disturbances, hallucinations, sleep paralysis etc. however, the decision to take these drugs was mine. The neurologist told me the possible benefits and made it very clear what the side effects might be, it was then completely my decision whether or not to take them.

I could not in all conscience sue the drug company when I was aware of the possible repercussions of taking these drugs. If drug companies are sued for producing these drugs, then where is the incentive to try and produce new ones, that may not have the same level of side-effects and could potentially benefit thousands of people.

Caroline
I understand your point of view Caroline but drug companies didn't out warnings in Requip until 2007. The consultant never told us about any side effects.
By 2007 my husband was effectively insane and our savings had gone and our marriage all but destroyed.
We had no legal case according to legal experts, as it is not an offence to sell a drug causing terrible side effects, even to 1 in 4 or 1 in 3 users, as long as a warning is in the packet. If you carried on taking it after 2007 you proved you ignore warnings (!) and have no case to pursue.
So those warned cannot claim redress. But those damaged before warnings appeared are those who post on here and feel badly let down as they face a ruined future alongside a worsening of their Parkinsons.
GG
Hi,
As things stand TODAY,I totally agree with Caroline.All the warnings are there.As are the warnings and possible side effects on all medications.I worry also of drug companies potentially running scared.With future incentives marred by lawsuits.
There should be Two distinct time angles on this issue,those like Golden Girl said,prior to the reviewed warnings,and those after,including the present.
Many new people coming to the forum are potentially spooked by early accounts involving DA's,potentially avoiding what to them,could be a crucial stop gap before starting L,dopa treatment.A medication which should really be delayed if possible,especially for those younger PWP.
All the best
Titan
Well said Caroline and Titan, I agree
Hi all, I am one of those people that took Requipt/Ropinerole before 2007, I actually took it between 2003-2006 and my neuro never gave any warnings about possible OCD side effects.

He still didn't tell me after he found out that I had spent all our savings, almost lost the house and in debt up to my neck. He simply took me off the meds, I only found out much later by watching a program on tv about somebody having a similar experience to me.

I am now told by the legal profession that because I found out much later and only then realised that the meds had caused my compulsive behaviours, I am 'out of time' to seek action.

This is the only country that has upheld the three year rule to sue in PD cases, others have waived it. I am still paying back those debts and will continue to do so until I die, all out off my pension and benefits....does that seem fair...I don't think so?

Glenchass
The issue post 2007 was simple, the drug companies failed to put any warnings on medication leaflets. Glenchass is absolutely correct the law in this country limits any claims to a 3 year period. So those affected prior to 2007 are left with zero chance of any redress for the pain and suffering they experienced.

The issue in 2012 is slightly more complicated. As Caroline and titan quite rightly say the drug companies do NOW put some sort of warning on the leaflet highlighting the risk. However the key word here is "risk" because what the drug companies state as the potential risk, is totally incorrect and does not stand up to any factual and evidence based findings! One drug company even puts the the risk down as being "very rare" at only 1 in 1,000? Yet evidence based findings have confirmed the risk is around 1 in 5. Therefore in my view this is totally mis-leading patients and also makes a mockery of current guidelines for categorizing side effect risks, as issued by the UK medicines regulators. In addition to this in 2012, we still have some medical professionals who prescribe these drugs without giving any warning about the potential for Impulsive and Compulsive behaviour side effects.

These two factors are why it is not just a simple as saying, everyone should now be fully aware of this issue and the drug companies and medical profession are blameless. In my opinion the drug companies and medical profession still have got some way to go with fully engaging with this issue before we can simply lay responsibility at the patients door.....
3 Year rule.

This law needs changed. It's OK to change the Double Jeopardy law and retrospectively change Tax laws on a whim, we should petition to remove this piece of nonsense as well.

These companies should still do what is morally correct. They know they have botched, they know that we know and to hide behind some piece of legislation doesnt make it right.
Eck is right (ie I was going to write something similar)- this is a moral question not just legal. The companies who made the profits have a moral duty to compensate those damaged by their products. Likewise those who now benefit from using DAs have a moral debt to those who were guinea pigs for the drugs they now use, we should all be 100% behind a campaign for at least a modest recompense (ie replace the money lost if nothing else).
What may be needed is for some well-known parkinson's charity with moral authority to fund and organise a campaign highlighting the immorality and unfairness of the situation in Britain irrespective of the legal obligations. A large lump of bad long-term publicity might be worth a donation of a few million. Can anyone suggest such an organisation - perhaps the MJF foundation?
.
My DA/OCD saga lasted 7 years, and can be divided into 2 phases:

Phase 1.

In 2000 I was prescribed Cabergoline. We were all (Neuro/PD Nurses/GP/Me) unaware of any risk, so as the drug worked well on my motor symptoms we were happy. In about 2002 DA/OCD research findings started seeping out into the neurological fraternity, and there was a BBCTV programme about it in August 2003. Warnings started to slowly appear in packaging, but the frequency statistics (1 in 1,000 instead of the 1 in 4 we now know) were ludicrous. I was never informed of any of this changing situation by anyone, and so continued oblivious to the changing parameters. Indeed I had no reason to keep reading the leaflets every week, because as far as I was being told my PD and medication were stable.

Meanwhile my behaviour started to change (we all know the details), and these changes got worse and worse in line with increased dosages. However still nobody told me about the new findings, and I was specifically told - time and again - that the wilder and wilder behavioural problems I was having could NOT be related to the PD medication.

Phase 2.

From 2003 to 2007 my Neuro MUST have been fully aware of the link between DAs and OCDs. It was in the media, trade journals, everywhere - anywhere a health professional would look. Unfortunately not anywhere in my own crazy new world, where my brain was fully occupied on other pursuits. Also unfortunate was my Neuro's decision that for whatever reason (I still have no idea) I should be deprived of all this info. He carried on prescribing this junk to me year after year, while I was destroying everything around me. And I mean EVERYTHING.

Had I not accidentally - in late 2007 - come across related articles on the Internet by chance by myself, there is no doubt whatsoever that I would still be being prescribed DAs, and by now would probably have killed myself.

Conclusion (i).

Prior to putting any drug on the market for general use the drug company has a legal and moral duty to fully test the product, and either eradicate all side effects or provide potential consumers with accurate statistics such that they can make informed decisions.

The consultant should be fully au fait with the product and its potential effects, and should ensure a sufficient and suitable understanding of all the issues is passed on to the consumer and any carer(s). Use of the product should be withheld until the consultant is happy that the patient is totally aware.

Conclusion (ii).

Once the drug is in use the consultant retains full responsibility for monitoring the patient's progress. Although on a day-to-day basis he may use patient, carer, nurse or GP as feeds into the information process, overall responsibility clearly lies with the consultant. Numerous drugs over the years have caused patients to withhold information from their physicians - or indeed report untruths - hence the need for an experienced and professional eye to remain constantly vigilant.

Should the consultant become aware of any material data which could affect the performance of the drug, or result in any significant changes to side effects, he MUST inform the patient/carers immediately, and arrange an urgent appointment to re-evaluate that solution.

Liability

I'm no barrister, so can only present here what I believe to be fair and just. In our cases (i.e. DAs causing catastrophic OCDs) I believe the drug companies have failed to carry out sufficiently stringent tests, for a long enough period, prior to going to market. Their keenness to recoup their outlay overrode reasonable test levels. Meanwhile at the point of going to market it was reasonable for consultants to assume sufficient testing had taken place (as per detailed government guidelines), and so any liabilities pertaining to my Phase 1 period would be the responsibility of the drug company. However in the UK at present, as we know, a 3-year limit is in place, so little can be achieved here.

On the other hand, I can see no way that the drug company can be blamed for what happened to me during my Phase 2 period, as this was all the result of my consultant withholding information and not keeping me informed. Liability here lies with the Neuro AND the relevant NHS Trust, for negligence. As far as I know there is no time limit on negligence cases, which can also involve representations to have the consultant struck off.

By estimating a date when I moved onto Phase 2, and thus when liability shifted from drug company (product liability) to consultant/NHS (negligence) I can then break down my claim(s) between the two parties.

Mental Incapacity.

Once I'd been take off DAs and had returned to mental normality, I was lucky(?) enough to be arrested for misdeeds carried out under the influence of these drugs, and ended up in the Crown Court. I say lucky because since these were criminal charges I was entitled to full legal aid, and to bring in expert witnesses - two top Professors of Neurology.

One of the points they made was that although it seems the drug company is off the hook if it can demonstrate that the patient was warned about the side effects, the patient has often by that time lost all sense of good/bad, right/wrong or fantasy/reality as a DIRECT RESULT of taking THEIR medication. Furthermore, since most such sufferers have become extremely devious, secretive and sneaky they will by now not be having open and honest discussions with those around them. Just "making them aware of the risks" will almost certainly have no effect at all; the patient will be long past that stage, and up in the trees.

A couple of extracts from the report produced by one of the professors:

"I am also convinced, not only on a balance of probability, but also beyond reasonable doubt, that his (offence) was also entirely due to his prescribed medication, and that at the time he was unaware of the fact that real people were losing real money because of his activities – this is entirely consistent with what we know about the dopamine system in the brain and its crucial role in reward and risk-taking."

In answer to two questions posed to said Professor by counsel:-

"Did cabergoline override Mr Xxxxxxxx’s sense of moral responsibility?"
"My answer is yes."

"If his actions were dishonest by the standards of reasonable men, did he believe himself to be acting dishonestly by those standards?"
"My answer is no. He was so driven by his drugs that I do not believe he even considered this."

As you probably know, the judge dismissed the case and let me off. He declared that I COULD NOT BE HELD RESPONSIBLE for any debts incurred during the whole period 2000 to 2007.


Ray.
I wonder if the dearth of posts in this thread is in any way connected to the legal "gagging" order served on one DA/OCD sufferer by the manufacturer which preventd him/her posting,publishing,discussing the wrecked life and relationships caused by the drug?
The damage was not disputed in court but the case lost because the patient could not prove which manufacturer had made each and every one of the packets prescribed over a number of years.
Heads the drug barons win and tails we lose. Again.Any progress with the campaign Blue-eyes?
GG