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Charlie Gard: Death threats sent to Great Ormond Street staff Watch

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    (Original post by ThomH97)
    True, but it is the only justification I can see for legally letting people experiment with treatments on kids.
    Plenty of clinical trials work this way. Sick kid is invited to try out a new drug as part of their treatment. Granted most things are tried out on animals first but ya know.
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    (Original post by ThomH97)
    I think if that were the case, and the parents saw it as such, it wouldn't be too bad a thing. After all, how else can you hope to treat illnesses that kill the very young apart from try experimental treatments on the very young?

    That said, if that is the case then I don't see why the parents (with help from donations) are having to stump up the cash. If you volunteer to test something, at the very least it shouldn't cost you.
    The same way any medical drug or procedure is done. You do years of clinical testing. Even after years of clinical testing, you find effects on humans that were not apparent.

    Keeping anyone alive in pain on an artificial ventilator to experiment with an untested treatment that will not increase quality of life is unethical to the extreme.

    The NHS is not going to pay for an untested treatment. That would be stupid.
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    (Original post by Moonstruck16)
    Plenty of clinical trials work this way. Sick kid is invited to try out a new drug as part of their treatment. Granted most things are tried out on animals first but ya know.
    The ones I see and hear about offer expenses at the very least to participate in a trial, often they'll pay a bit extra too.
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    (Original post by ThomH97)
    The ones I see and hear about offer expenses at the very least to participate in a trial, often they'll pay a bit extra too.
    Yep that's typical for most trials, I'm very familiar with them because I take part in them quite often and am currently taking part in one now.
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    Update parents have ended their legal fight http://www.bbc.co.uk/news/uk-england-40708343
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    No winners here. I hope that rent-a-mob clears off quickly.
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    (Original post by ChaoticButterfly)
    I don't know why they are not aloud to take the kid to america to be honest.
    Because the drug has no scientific basis to work, this would be different IMO if the drug was on trial for patients with his condition, but its not. Essentially you may as well take him to see a witch doctor or to trial a new healing pill. The pain and suffering caused in travelling to America in additional to the total absence of a chance to improve, means this is cruel.

    Parents wishes shouldn't override the patients wellbeing.

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    Should never have been given as much media coverage as it has, Donald Trump talking about it, media eager to stir up controversy. This should be a private matter, or in this case a low key court case.

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    (Original post by Fullofsurprises)
    It does look as if some of these medics from the US are promoting what appear to be entirely untested treatments - perhaps, cynically, they view this baby as a potential testbed and also as a potential advertising medium for their ideas in the unlikely event that they work.

    I feel desperately sorry for both the parents and the staff at Great Ormond, who are all very good people stuck in a hard place.
    Yup, they do get paid as well

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    Only chavs would have made these death threats
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    (Original post by ThomH97)
    I think if that were the case, and the parents saw it as such, it wouldn't be too bad a thing. After all, how else can you hope to treat illnesses that kill the very young apart from try experimental treatments on the very young?

    That said, if that is the case then I don't see why the parents (with help from donations) are having to stump up the cash. If you volunteer to test something, at the very least it shouldn't cost you.
    Because to actually justify calling something as experimental, it must have a scientific basis about how it will work and have shown evidence in mice models, other animal models or even in a clinical trial. This treatment has not been trialled for this disease, it cannot get into the brain.

    Look at experimental cancer treatments, they go through cell studies (does it shrink the tumour) animal studies (do mice that are treated survive better) and phase I trials (with this drug kill the patient) all before we get to Phase II (can it work in patients)

    In addition to the individual case of Charlie Gard, this sets a dangerous precedent, a doctor in Zimbabwe may say that bananas can cure cancer, obviously with no scientific proof or testing, yet parents could, at the expense of the wellbeing of the child. Take them out of the UK and to another country for "treatment"

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    Gurantee parents will be blaming GOSH for not acting sooner. Didn't this doctor refuse to come in January?
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    Let us hope they donate the money raised to GOSH for all their great work.
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    (Original post by Meany Pie)
    Let us hope they donate the money raised to GOSH for all their great work.
    No doubt there will be people who will want their money back because of how 'evil' GOSH is...

    I do hope that whatever they have left they donate to them though.
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    Looking at some of the inflammatory reporting and headlines in the tabloids about this story, particularly the Mail, I really hope Great Ormond St sue them for damages.
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    (Original post by Moonstruck16)
    No winners here. I hope that rent-a-mob clears off quickly.
    this... no winners now the little guy can rest... and hopefully his parents can find some peace too.

    they will go back to their den until they find the next thing to pretend to care about.

    (Original post by That Bearded Man)
    Because to actually justify calling something as experimental, it must have a scientific basis about how it will work and have shown evidence in mice models, other animal models or even in a clinical trial. This treatment has not been trialled for this disease, it cannot get into the brain.

    Look at experimental cancer treatments, they go through cell studies (does it shrink the tumour) animal studies (do mice that are treated survive better) and phase I trials (with this drug kill the patient) all before we get to Phase II (can it work in patients)

    In addition to the individual case of Charlie Gard, this sets a dangerous precedent, a doctor in Zimbabwe may say that bananas can cure cancer, obviously with no scientific proof or testing, yet parents could, at the expense of the wellbeing of the child. Take them out of the UK and to another country for "treatment"

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    i didn't read that in depth into it... had the treatment not even been sucessfully tested in mice for this disease????

    i feel like some of our biology lessons in school would be better spent teaching people the scientific method and the steps that are taken from research into a drug all the way to it actually being on the shelves/in hospital... maybe these people could be stopped from exploiting the deperate.
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    (Original post by Moura)
    i feel like some of our biology lessons in school would be better spent teaching people the scientific method and the steps that are taken from research into a drug all the way to it actually being on the shelves/in hospital... maybe these people could be stopped from exploiting the deperate.
    I'm fairly certain that is part of the curriculum, at least it was when I did biology.

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    (Original post by Moura)
    this... no winners now the little guy can rest... and hopefully his parents can find some peace too.

    they will go back to their den until they find the next thing to pretend to care about.



    i didn't read that in depth into it... had the treatment not even been sucessfully tested in mice for this disease????

    i feel like some of our biology lessons in school would be better spent teaching people the scientific method and the steps that are taken from research into a drug all the way to it actually being on the shelves/in hospital... maybe these people could be stopped from exploiting the deperate.
    My understanding was that the drug has been trialled in other diseases and worked, but not for his specific condition, the parents were misled about it being curative and from a theoretical point of view, it cannot enter the brain, and this hasn't been explained. Therefore, it cannot work.

    The point is the disease has been rarely studied, and the treatment hasn't been trialled in this disease at all.
 
 
 
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