1 EAGLETON NOTES: A Drugs Trial

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Friday, 10 January 2020

A Drugs Trial

The drugs companies come in for lots of flack particularly for charges and profits. Regardless of that one has to remember that it is drugs companies who finance and develop new drugs.

I'm in Glasgow at the moment having just had my three-day 16-weekly review for a drugs trial which I've been on since September 2017. 

Briefly, my cancer started getting bolshie again in 2017 after nearly 20 years of various treatments since the operation to remove the cancer in 1998.

The Advanced Nurse Practitioner who has 'looked after' my treatment since 2006 asked if I would like her to see if she could get me onto a drugs trial which she thought might benefit me. She was successful and I've been on the trial since then. It was a 30:70 double blind trial which basically means that only the drugs company knows who is on the 70% having the real drug and who is on the placebo. The benefits for me were spectacular when I took the first set of tablets (which suggested that I was on the real drug not the placebo) because there was a dramatic physical reduction in the cancer indicators. Last year the results of the trial were sufficient for the trial purposes and the placebo users were offered the opportunity to go on the real drug. It's now coming to an end. However the drugs company now has to get the drug licensed in every country worldwide.

I was one of 48 UK participants out of 1509 volunteers worldwide in 36 countries.

This is one of thousands of worldwide drugs trials. Some will prove to be effective and some will not. Some will end up as drugs for patients and some will not. All cost a great deal of money.

When I was first diagnosed with my cancer the only treatments were surgery and radio therapy and hormone therapy. Over the years I've had all three. Now there are many treatments including various chemo-therapies and many more drugs. 

So whatever the reality of the profits and morals of the drugs companies I, for one, am very grateful that they take all the risks and develop pioneering drugs and treatments.  

29 comments:

  1. There's lots of vigorous debate on this topic.

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    1. There is indeed, Red. However, not so far as I am concerned.

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  2. So are you going to be able to continue on the tablets if you need them? I'm glad to hear that they are doing a good job.

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    1. Yes, Amy. I'll stay on the tablets one way or another if or until they cease to be effective.

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  3. It's all the research and testing that costs so much; not the resulting little white pill. Bravo to you for having played 'guinea-pig'.

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  4. I have no problem with their profits. Good on you for helping out.

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    1. Adrian, I hadn't looked at it that way. So far as I was concerned it was a fortunate privilege.

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    3. One can look at things two ways. A chance or no chance. I wouldn't be brave enough to accept a drug trial or go near a medical practitioner unless next to death. Like in all walks of life some are superb but the NHS will accept dross and reward them for it. They shouldn't. My eyes have to be private and very good the lass is. I went to see a dentist and thought him too expensive so haven't bothered. Likewise when I went to get my rib cage popped into some sort of order, the bloke at the Northern General in Sheffield was a total tosser. It takes ages and some knowledge to find a good one in the UK. Went to Spain and the lass did a middling job but couldn't redo half my lung. Not to worry I have enough to smoke with and can still manage sheep and other domestic animals.

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    4. Well, Adria, but for the medical profession in the NHS from my partial lung removal at 15 to the re-building of my insides in the last two years I have no complaints whatsoever. Of course you are right. There are numpties everywhere unfortunately. But, hey, we both woke this morning. Well I did anyway.

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  5. Like Adrian, I have no problem with their profits. Any company producing something or offering services should make legitimate profit - after all, how else are they to pay their employees, their equipment, their buildings?
    Good to know the drugs have worked for you so well. A close family friend of ours has been on a similar program for years, he's been diagnosed HIV positive many years ago and he's still around and able to work even though his health will never be quite what it could be for a man of his age (late 50s).

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    1. Meike, I'm glad to hear your view on drug company profits. So far as the trials I have seen have been of great benefit to those taking part. But there are so many I suppose many must fail too.

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  6. I am so glad to hear that your condition has improved so much on the new drug. It must have taken quite some courage to take part in the trial.

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    1. JayCee, in many ways it was a no-brainer. Continue without any treatment and with the cancer indicators increasing very quickly or take a trial. Hope or potential death? Choice was easy.

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  7. Have you ever met any of the other participants in the trial? It would be most interesting for you to compare notes with other beneficiaries.

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    1. I've met many trial participants at The Beatson but I'm not aware of any who were on my trial: The ARAMIS trial. Some of the trials are for people in advanced stages of cancer and I've met a couple who have been there each time because our review dates have been the same. I've found it quite upsetting when people have been on the placebo and have deteriorated. It's harsh but necessary, unfortunately. One can pull out of a trial at any time but if there is no alternative treatment there's no point.

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    2. You were so lucky that you didn't get the placebo. I guess that after the health challenges you have had to face you deserved a big slice of luck.

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  8. Excellent and excellent stuff the drug companies are doing. Often it is countries like the UK, and so often only us in isolation, that take so long in licencing new drugs that hold up the wonderful progress that is made and the help that is there for individuals who really need it.

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    1. Rachel, I'm not sure that this country takes longer than many others in the developed world because I think we are part of the European Medicines Agency scheme. I think there should be stringent testing. Of course that doesn't mean that some licensed medicines are not considered a good allocation of scare financial resources.

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  9. Graham...this is a most interesting, and moving post.

    We all should be grateful to the drug companies and the excellent work they do in seeking cures. Of course, there are always the "knockers", but they will knock everything because they are the "experts", you know! I bet they stop their ravings if or when they fall ill and are in need of life-saving drugs, though! The world is full of hypocrites, unfortunately. And, of course, those "experts"...aka "the drips under pressure"!!

    I have no problem with their profits, either. Without making a profit, their experiments, their successes, research etc., etc, ...the good work they do for the millions in need would not be possible.

    I am so pleased everything is going well for you, Graham...may it continue doing so. Take good care. :)

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    1. Thank you, Lee. Since I've been in the trial I've learned a lot more about drug and medical trials in general. It's absolutely astonishing how many are going on worldwide.

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  10. I'm very happy for you that your participation in the drugs trial has been successful (and that you happened to be given to the real drug). And with the good results from the trial I hope the license procedure won't be unnecessarily complicated either (i.e. so that others can soon get the same help). I can't say I really know all that much about the financial side of it all. But I do know is that as soon as one knows someone personally who would benefit from a certain drug or treatment but can't get it for financial/political reasons (rather than medical), that is extremely upsetting...

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    1. Monica, the last point you mention is one of the most upsetting things. The cannabis argument apart (opinion is so divided on that) the problem comes when a treatment is so rare that it costs £500,000 a year or more for a patient when 500 patients could benefit from £1000 treatment. It comes down to the allocation of scarce resources. I've had to do it with local authority services. Cut one and half the population suffers and complains and cut another and very often the same people suffer and complain. It can be very hard for everyone.

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    2. Yes I realize it's probably often complicated, seen from a wider perspective. When writing my comment above I was thinking of one friend especially. Too complicated to relate here (and not really my story to tell) but she's been through a lot. And having known her a long time has given me too some second-hand insight into the bureaucracy involved if, for example, needing a new and/or expensive drug not yet approved or included in our benefits system. (no cannabis or other narcotics)

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  11. I am grateful to anyone who makes it possible for you to be alive and well on planet Earth for a longer period of time.

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    1. What a lovely thing to say, Marcheline. Thank you. I just wish that you and Bear were having an easier time of it right now.

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  12. I'm have no objection to drug companies making a profit, most successful enterprises do. And while their success helps you (and another of my friends right now) I'm happy with them.

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    1. Thank you, Pauline. I think many underestimate the good they do.

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