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Clinical Trials Transparency Campaign

(14 Posts)
Elegran Sat 17-May-14 09:36:27

They could still tell the truth about the failures as well as the wonder-drug successes!

jinglbellsfrocks Sat 17-May-14 09:34:41

Elegran "Are they seeking profit over efficacy so assiduously". Yep. I bet they are. I don't for one moment believe they do it for the good of mankind.

Jessm Respect to the mice.

Elegran Sat 17-May-14 09:25:55

Walter Publishing the results of their clinical trials will surely not add much cost to what has already been spent on the pre-clinical part?

And if other drug companies studing the same compound or protocol have published their results, the companies can compare the two and both companies benefit, as well as the prescribing medical community who will be using the new treatment?

Are they seeking profit over efficacy so assiduously that they won't be open even about throwing out the failures?

Burying adverse results is like holding a murder trial, keeping the proceedings secret, and releasing the accused back into the community whatever the verdict.

Lona Sat 17-May-14 08:58:01

Signed.

JessM Sat 17-May-14 08:18:20

jinglebell the clinical trials happen near the end of a period of drug development that may have gone on for 5 or even 10 years. Many mice have dedicated their lives etc. Then they have safety trials - usually with paid, healthy volunteers who get paid a bit. A few years ago some volunteers went into organ failure during one of these trials.
Once the drug is checked to be safe for human consumption the companies have to recruit lots of people for clinical trials. These will be people who have the disease that the drug is aimed at. Typically they will plan to give half the patients the drug and the other half the placebo. Or it might be half have the new drug and half have the current best drug.
It will be double-blind - neither doctor nor volunteer-patient will know what pills each person is taking. Then when all the results are in they will analyse to see whether the drug is effective (or more effective than best current approved drug) and whether any side effects have been reported.
Then if they want to get their drug accepted by the medical community they have to publish their results. This is not the moment for secrecy. If they only choose to publish the results they like (and not the ones that did not show effectiveness - or that did show too many side effects) how is the medical community going to make a judgement?
This issue is really important for patients - and for tax payers as the NHS spends a lot of money on drugs - new drugs often very expensive.
Saying "nothing can be done" - well how does that figure? Did Wilberforce or Pankhurst say that?
If there is a legal obligation to publish details at the start of the trials then there can be no underhand hiding of results.

jinglbellsfrocks Fri 16-May-14 19:23:57

I suppose if a drug company pays for a trial they don't want the results being seen by their competitors, who would then be getting the information for free. If that makes sense.

It seems bad but I doubt if anything can be done about it.

waltermitty Fri 16-May-14 19:17:05

JessM - I would never award myself the title of "expert" but my time working on a trials unit gave me an insight into the eyewatering sums of money involved in developing and trialing new drugs. My point was that, as in most things where vast sums of money are involved, the lines can become blurred. Pharmaceutical companies are rich and powerful - we need them and they know it - I don't agree with everything they do, but then that applies to a lot of powerful organisations!!! I have a lot of respect for professionals working hard at grass roots levels to develop new and effective treatments - it is incredibly difficult and time consuming work which can often come to nothing. I did not have the patience in the end!!!

thatbags Fri 16-May-14 08:45:52

Yes, walter, tell us more, please, about your life working in a clinical trials unit.

Aka Fri 16-May-14 07:24:05

Signed. Having watched the programme last night about Fifty Years on from Thalidomide I can't believe that this sort of secrecy is still with us.

JessM Fri 16-May-14 07:00:46

waltermitty it would be good to hear more than one word from you on the subject if you are an expert on clinical trials. Including why it is ethical to quietly bury trial results if they don't show that the drug works. Surely registering all trials up front with the design of the trial, number of people involved and the criteria used, so that the final publication can be judged is a good idea?

waltermitty Fri 16-May-14 00:21:20

One word - dosh! And I have worked in a Clinical Trials Unit in a past life!

Eloethan Thu 15-May-14 23:35:14

I've signed this. I find it amazing that drug companies are not obliged to publish all research findings, especially when the results raise questions about the efficacy of a drug.

MiniMouse Thu 15-May-14 12:52:37

Done!

JessM Thu 15-May-14 08:03:55

Many people volunteer to take part in clinical trials of new drugs. Some get paid a small amount and others don't.
They do this knowing that they may or may not receive the drug (they may get an inert placebo) and that they might get side effects - which could be dangerous.
Doctors and regulators rely on the results to make decisions about prescribing. Ben Goldacre has highlighted that many drug companies are not open and honest about the results. So doctors, regulators and patients have incomplete information about whether a drug is going to work, or work better than another one and whether it is safe for them. The Alltrials campaign demands that the details of all trials be registered before they start, so it will be transparent to all if some results have been inconclusive, or whether there has been a big drop out rate of those on trial.
One area that Ben has highlighted is that the government has been spending many millions stockpiling Tamiflu - but it is not clear whether it is any use because some of the trial results were not published. hmm
The Alltrials campaign has had some success, with a recent vote by MEPs but there is much left to do. Please will you sign the petition today to keep up the momentum.
www.alltrials.net