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"commentText": "I think this Canadian commentary is very much to the point:http://www.macleans.ca/opinion/the-charlie-gard-story-reveals-what-we-wont-accept-about-medicine/
It reiterates the truth that nature has sentenced Charlie to an early death - not the courts, or the doctors at GOSH. It also spells out how Dr Hirano's involvement occurred.
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"commentText": "Absolutely brilliant article, and very much to the point. the Victorians had a much more pragmatic and realistic attitude towards the concept of 'death'.The problem facing many posters here is that the core issues have been put to one side. Instead many people are trying to convince the unconvincable of the errors in their thinking. It's a startling relevation to discover just how significant a proportion of the public are, well just basically thick and unresponsive to reason, too idle to read published, reasoned arguments, or both.
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"commentText": "While this may sound cold, the UK court should approve the transfer of Charlie to the US for treatment for the benefit of medical treatment for scientific purposes. Ie, we can't let an opportunity go to waste to try something that may prove beneficial to many people in the future.
So at the very lowest level, I'm trying to appeal to the courts cold heartedness: yes, we should use Charlie as a guinea pig.
Personally I think it's outrageous a parent has to ask any govt permission to have their child treated for any illness. How you Brits put up with this is beyond me.
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"commentText": "The court could not take that view. They have to act in the interests of this particular child, according to the law of this country.Re your last comment, the law is not difficult to put up with because it seldom has to be invoked. Most parents act in the interests of their children.
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"commentText": "So presumably Charlie's parents are not acting in his interests?
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"commentText": "@ Dan QuixotiThat is what I think.
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"commentText": "Why stop there? Don't be shy. Let's go for full vivisection - it's been done before.",
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"commentText": "But Charlie Gard's parents did not have to ask permission for his illness to be treated. He has been treated at GOSH - the UK's leading paediatric hospital - for the past nine months, for which the family has not had to pay anything despite the cost of his treatment probably running into hundreds of thousands of pounds.
Unfortunately he has a genetic condition that will prove fatal whether he travels to the US or not. The parents are in denial about this; the specialists at GOSH and the courts are being realistic.
Do you never remove life support in the US?
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"commentText": "If parents are to be allowed total control of the medical treatment of their children, then they are also in the position to deny treatment. Are you content to allow, for example, children of Jehovah's Witnesses to die because their parents refuse to allow them to receive blood transfusion?
I know of four cases of children who have died because their parents made inappropriate decisions regarding their medical care. In all of the cases, had an outside agency been able to intervene the children would almost certainly have survived. Three would have lead fully \"normal\" lives. The fourth had type 1 diabetes, so would have a life of challenges, but a great many people with diabetes do very well and lead long happy lives. The courts did become involved in these cases - too late. One pair of parents awaits trial. One pair has been convicted of failure to provide the necessaries of life. One has been convicted of criminal negligence causing death. One pair has been convicted of first degree murder.
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"commentText": "What most people seem to forget, in what has become an over-emotionalised 'debate', is that GOSH has world class doctors, the equal, I'm sure, of their counterparts in the USA and they have kept this child alive, despite all the odds, for over 11 months. The parents, for whom I feel very sorry in their dilemma, have never-the-less turmed their backs on GOSH and everything that has been done for their child and waged a legal war attempting to depict GOSH in a very bad light. I see that as very ungracious ingratitude. The child's condition is so severe, that even if this doubtful American 'food additive' made any positive contribution, it cannot produce a healthy child with a life to look forward to, only a severely mentally and physically disabled one with little awareness. Tragic.",
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"commentText": "Most people have not forgotten this, despite some absurd comments in the media by ill-informed people. I think most people agree with you, and would go further than you have about the outlook for this poor child if given the experimental treatment.",
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"commentText": "Are you a world class expert in this area like the American doctor from the renown Columbia University? Just what is there to lose by allowing this treatment? It seems obvious--the world class doctors at GOSH wouldn't look that good if it was successful, would they? And its good to see the cash-strapped NHS can find the money to fund all these court cases.This sad case is a classic example of bureaucracy at \"work\". Once a decision is made by functionaries massive amounts of taxpayer money will be expended defending it.
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"commentText": "They have to take account of all the possible outcomes, not whether one outcome would make them look bad. It is important that this is worked out in the courts. It is in all of our interest that medical decisions are not based on emotion but evidence. The views of a single specialist have to be considered alongside those of other specialists. He is a scientist in mitochondrial disease but there are many factors, and the most important here is the evidence of brain damage.
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"commentText": "First, Gosh and Barcelona are premier division. The US, despite its resources, are 1st division, if that.Secondly, the child's condition is terminal.
At best, he has 6 to 9 months left. The question is whether he should spend that amount of time in pain, because he is being kept alive by artificial means, or be allowed to slip away with some sort of dignity.
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"commentText": "An interesting article from an American blog on mitochrondial disease published online today:https://mitochondrialdiseasenews.com/2017/07/19/nucleoside-therapy-explained-why-doctors-debate-treating-charlie-gard/
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"commentText": "I mean mitochondrial disease, sorry!",
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"commentText": "Awful reporting. \"....according to the mail on line\". How about a bit of learning from David Byrne \".. When I have nothing to say my lips are sealed\". Sad to see a once great paper delivering nothing but second hand speculation.",
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"commentText": "I believe that the reasons the courts / NHS have refused to allow this to go ahead is that if they allowed it then everyone on benefits would demand the same treatment. Whether a family pays for the treatment privately or its costed on the NHS, the rule of thumb in the UK seems to be 'if they've had the treatment then I want the treatment', and for those who choose benefits as a full time occupation it goes along the lines 'they're rich (read works and pay tax) I'm not but I have the right to the same as them so you (NHS/government) pay for my treatment'.So to stop this from happening, and this line has been used on myself, the response is 'its cheaper for you to suffer than to supply everyone with treatment'.
The Gard family should get themselves over to the USA as soon as they can and NEVER look back at this, some would say, failing country.
For anyone to hide behind 'prolonged suffering' when the treatment takes 8 weeks and the bureaucrats have sat on this since March, they need to hang their head in shame and hang up their coats as THEY have caused more suffering than anyone else. If there's a 0.10% chance, YOU TAKE IT!!!
Nearly everyone at some point in their life has had a pain so bad they may wish they were dead, but as they get over the pain and time moves on they forget about it and carry on with life. What if everyone gives up at the first sniffle, where would we be? No. Sorry. My opinion is that all this is about, is if one person gets help then everyone has to get help, and that costs money and with a vast majority of people in the UK taking more benefits out of the country than they pay into the country, the UK can't support this model.
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"commentText": "\"The Gard family should get themselves over to the USA as soon as they can ....\" Maybe you could explain how they could do this given that:
- Charlie Gard is a ward of court and cannot leave the hospital without the court's permission;
- He will need medical staff to accompany him, who are not going to risk their careers by breaching a court order;
- He is hooked up to life support, so transporting him for several hours is going to be somewhat difficult.
Also, maybe you could explain what happens when the money runs out and the 'experimental therapy' doesn't make him into the normal child that so many people seem to think it will?
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"commentText": "Take the money off the benefits cheats who smoke, drink, take drugs walk miles when they are virtually unable to do so, take foreign holidays live in foreign lands outside the UK claiming benefits they are not entitled to, then little Charlie who is genuinely disabled will get his full entitlements.",
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"commentText": "Nonsense.. This strain of the disease is so rare there have only ever been 16 so it is highly unlikely there would be a rush of 'people on benefits' wanting the treatment. GOSH have already treated over a thousand children with similar strains and with similar (but not identical) treatment the US doctor is proffering. However, Charlies condition is so severe they have said no treatment could extend his life without him suffering. The arguments are not about money at all.
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"commentText": "The treatment has to be given to Charlie for life.
It isn't simply ''eight weeks'' of treatment, then Charlie gets on his toddler bike and pedals off into the sunset as his parents have said might be the case
Look at less severe cases, the children's parents are forever fundraising to get the funds to pay for ongoing treatment.
That doesn't include round the clock care that Charlie will need for the rest of his days.
The little girl who is featured in the Charlie appeal isn't actually riding a bike..she is perched on it, her limbs look as thin as twigs..it is unlikely she was ever as ill as Charlie is.
He has the far more severe version which affects muscle, and much worse, the brain.
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"commentText": "I find it scary that there are so many people on here that just swallow whatever the establishment or courts tell them. This baby could have received the noninvasive treatment already and either been improving or at rest by now. The extent to which the state would go to to preclude a non-evasive procedure from a world renown doctor, that would at least leave a parent knowing they have done everything they could for their child, is astounding. All of the vile power struggles and begrudgery shown on this blog is even more vile. All known curable diseases today were once incurable. It did not happen by accident. ",
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"commentText": "Like your idiot president I suspect you have waded in to subject you know little about. I suggest you read the court judgements to see why the treatment was considered by GOSH and then rejected as having the capacity to cause Charlie more suffering.You are not the only country with world class doctors and many have been consulted, from the UK (not just GOSH which is, incidentally a world renowned centre of excellence in paediatric medicine) and Europe. They all agree Charlies condition is too far gone for the treatment to help. The US doctor agreed with this, and refused to come and examine Charlie, he has now, for some reason, changed his mind.
They wanted to turn off life support months ago, the parents are dragging this through the courts.
This is not 'begrudgery', in the UK a child's interests are considered paramount by the courts, we do not undertake medical research of untested drugs on babies for profit.
Why don't you sort out your own countries appalling problems with health care?
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"commentText": "Your ignorance of every relevant fact is so fundamental as to defy there being any known way of responding to you. You are truly beyond the pale.",
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"commentText": "America, for all it's religious /political tub-thumping should ideally ''Take the beam out of it's own eye before removing the mote from the eye of another''.
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"commentText": "Amazing that you think the world renowned Drs at GOSH, don't know what they are talking about.
Even though they have years of experience treating children from all over the world, with complicated medical issues.
Yet you give kudo's to a Dr who when first consulted, stated his treatment would not help Charlie. He only changed his mind after receiving a call from the Whitehouse.
Read the facts before heaping bile on the British Drs and courts.
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"commentText": "NHS doctors have brought the case based on the ethics of using a dying child as a guinea pig. As Dr Hirano said in court, US market driven medicine would have taken the parents' money, knowing there was zero chance of the treatment working. Could this be one of the reasons US healthcare ranks worst in the developed world - while the NHS ranks highest (New Scientist 2017)? ",
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"commentText": "Since Trumplethinskin is not tweeting up a storm gloating about getting the money to build the wall to keep Mexicans out of the US, it means that the bill to which Charlie's clause was attached as a rider has NOT been passed by Congress & the senate. The only thing that has happened so far is the appropriations committee has approved the rider to the appropriations bill, which is primarily concerned with funding for the wall.
This odd custom in the US of attaching totally unrelated riders to bills baffles me.
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"commentText": "Rather than spend weeks or months haggling for a deal as the Conservative Party had to do with the DUP etc. in the US we just attach something we want to an irrelevant bill that we know many who might oppose what we want, want to pass. In short if people want that bill to pass they will have to pass it amended with what those who amended it want. It is a cut to the chase measure. lol. That is how breast cancer research funds etc. end up in defense appropriation bills. Moreover, in the USA, before any legislation can be voted on by either the entire House or Senate, it must first go through the committee that has jurisdiction and be voted by a majority out of committee. Committees tend to have less than 30 people on them and be fairly evenly divided between the two parties. So, while a bill can still be amended after passing out of committee it is much harder to get the 50% plus one needed to amend a bill from the full House or Senate than it is to do a back scratching deal in a small committee before it ever goes up for a full vote. I hope that clarifies the practice. ",
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"commentText": "PS. Had that been a stand alone bill starting from scratch via the committee system, it would have taken months to pass. Charlie doesn't have months. While I do not know that it is appropriate for the US to be doing from a political perspective as it interferes with your country (while fully in support morally), had the courts not fought this etc. that baby could have had this treatment a month ago and the outcome known at this point. So the whole denial on the grounds of not wanting the baby to suffer really falls flat and over here it comes across as a cruel powerplay in the name of power by the state. ",
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"commentText": "\"The decision by US Congress may oblige Great Ormond Street Hospital to release the sick baby so he can receive nucleoside therapy.\"When is the Independent going to correct this blatant piece of misinformation?
The US Congress has no authority whatsoever over a British citizen subject to British law. What next - mobilisation of the 7th Cavalry?
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"commentText": "I have actually seen a comment in an article on Charlie that suggested that the US should do an \"extraction\" of Charlie. They're probably thinking of sending Navy SEALS.
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"commentText": "From the states here, that is a funny joke, but it is a joke on your part I presume as the US is not doing any such thing. lol! ",
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"commentText": "I should clarify: the \"they\" in \"They're probably thinking ...\" referred to the people commenting on the article, suggesting the \"extraction\". Even Trump & his gang aren't, one sincerely hopes, stupid enough to contemplate actually doing such a thing.
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"commentText": "I agree - I said this more than once yesterday. The Independent has not bothered to revise anything other than the main citizenship/residence issue (very belatedly) since taking this story from the MailOnline.",
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