UN Charlie Gard, 10 months old, is denied experimental treatment in US - Time for some depression

Meet Charlie.

http://www.bbc.co.uk/news/uk-england-40206045

Charlie has a very rare genetic condition that effectively confines him to a vegetative state. He cannot even breathe without the help of a machine. His parents wanted to take him to the US for some experimental therapy that MIGHT have been able to save him. The hospital he is in disagreed. So they took this case to the Supreme Court.

The Supreme Court has rejected an appeal by the parents of sick baby Charlie Gard, over plans to take him to the US for treatment.

Chris Gard and Connie Yates want the 10-month old, who suffers from a rare genetic condition, to undergo a therapy trial.

His mother broke down and screamed as the decision was announced.

Charlie can stay on life support for 24 hours to give the European Court of Human Rights a chance to give a ruling.

He has been in intensive care at Great Ormond Street Hospital since October last year.

The hospital said therapy proposed by a doctor in America is experimental and that Charlie's life support treatment should stop.

Charlie has mitochondrial depletion syndrome, a rare disorder that affects the genetic building blocks that give energy to cells.

The family division of the High Court agreed two months ago that the hospital could withdraw Charlie's life support.

His parents have raised more than £1.3m through an internet appeal, in the hope they could take him to America for an experimental treatment.

Specialists in the US had offered a therapy called nucleoside.

Charlie's supporters gathered outside the court ahead of the hearing.

Holding pictures of the 10-month-old they chanted 'Save Charlie Gard' and "give him a chance".

Inside his parents waited for the decision. This is the final court in the UK able to hear their case.

Justice Lady Hale began by praising their devotion, as parents we would all want to do the same she said.

But as judges and not as parents they were concerned with the legal position and the proposed appeal she said was refused.

Charlie's mother Connie left the court wailing and shouting "they've put us through hell".

Chris, Charlie's father, held his head in hands and cried.

This may though not be the end. They want to try and take their case to the European Court of Human Rights.

Katie Gollop QC, leading Great Ormond Street's legal team, said the case was "sad" but not "exceptional".

She said the couple seemed to be suggesting that "parents always know best".

"Fundamentally the parents don't accept the facts," she said. "They don't accept that nucleoside therapy will be futile."

The court had earlier heard how Charlie could not could see, hear, move, cry or swallow.

Ms Gollop added: "He is on a machine which causes his lungs to move up and down because his lungs cannot go up and down.

"Charlie's condition affords him no benefit."

Following the ruling Ms Yates screamed outside court: "How can they do this to us?"

"They are lying. Why don't they tell the truth?", she said.

Charlie's life support machine will continue until Friday at 17:00 BST to give judges in Strasbourg, France, time to look at the case, the court said.

The case is now going to Strasbourg to be heard by the ECHR. Charlie will be kept on life support for another 24 hours to give the judges there time to think about the case.

This is sad, but I think the correct decision would be to shut off that life support and end this poor child's suffering.

 

[captn_kettle]

I admit I was both surprised at this, and deeply disappointed that a medical professional would act this way.

I honestly expected he had at least read the notes and was familiar with recent scans etc.

It's usually what happens in high profile, sensitive cases. The hospital has to shut up for their own good, while the opposition gains a big army of online followers. Then once the hospital is in the clear, they release a statement.

The decisions of hospital staff isn't on a whim, there's a fuck tonne of legal processes to go through, with a lot of people to talk to.

The problem with cases like this is that it touches an emotional nerve in people. So initially you get people defending the parents because "I would never want to be in that position" and "if I were a parent".

As time goes on the initial shock dies down, and people start seeing the situation for what it is. It happened with Maddie, it happened with Ashya and it's happened with Charlie.

 

[repentance]

I admit I was both surprised at this, and deeply disappointed that a medical professional would act this way.

I honestly expected he had at least read the notes and was familiar with recent scans etc.

The US granting the baby permanent residency without consulting it's own medical experts was also bizarre. There are a lot of people to be disappointed with in this case.

 

[captn_kettle]

The US granting the baby permanent residency without consulting it's own medical experts was also bizarre. There are a lot of people to be disappointed with in this case.

Knee-jerk reaction. The same shit happened with Ashya too.

These people who grant This stuff have only got the information from tabloids, and don't exactly bother to look into it in detail.

Cameron did the same thing, speaking out against Southampton general hospital without getting an insight into the situation. The guy who delivered the petition was a family friend of Ashya, and one of the highest contributors to Ashyas fundraising efforts.

When the family friend said that people should not attack Southampton hospital or kidz n cancer charity without hearing the facts, he was removed from the group by Ashyas brother, the main social media face.

He said he was ashamed to be featured in that documentary after what the kings did.

 

[Daughter of Cernunnos]

Outcomes of many conditions are vastly improved with quick treatment so it's not crazy to say that had the UK medical system not blocked the parents from the treatment his outcome may have been better. The state should not have that much control over children.

Just because the US doctor has financial interests in the drug doesn't mean he's malicious, it is very expensive to get drugs approved and takes a long time but that doesn't mean Charlie should have to wait and have no options and no chance. Nor is it solely financial interest as he has invested time researching this compound and this type of disease.

 

[AnOminous]

The US granting the baby permanent residency without consulting it's own medical experts was also bizarre. There are a lot of people to be disappointed with in this case.

It was the House of Representatives. You know who runs that and how much they care about science or medicine. Ask Michael Schiavo.

 

[captn_kettle]

Outcomes of many conditions are vastly improved with quick treatment so it's not crazy to say that had the UK medical system not blocked the parents from the treatment his outcome may have been better. The state should not have that much control over children.

Just because the US doctor has financial interests in the drug doesn't mean he's malicious, it is very expensive to get drugs approved and takes a long time but that doesn't mean Charlie should have to wait and have no options and no chance. Nor is it solely financial interest as he has invested time researching this compound and this type of disease.

Which is why the hospital saught the NBT treatment. They were the ones who told the parents about this experimental treatment.

But Charlie experienced significant brain seizures while the UK were applying for treatment. After his 17 day seizure-fest, GOSH said he had experienced irreversible brain damag and subsequently denied treatment they had tried to push for.

The yank decided he wouldn't visit Charlie after this episode, and only came to the UK when it was in a court hearing. He then said "I didn't read the notes, I didn't read his file, but I like the taste of money".

 

[CWCissey]

It's somewhat pointless to set up a charity and keep quiet. Competition for donor dollars is fierce so you need to be highly visible.

As long as they don't release a book every two years or so.

 

[Null]

His condition has worsened and he's probably going to die soon.

Whatever opportunity he had for life and quality of life was denied to him by the NHS. Towards the end, the success of the legal battle didn't even matter, because they had delayed it sufficiently long enough to make whatever was once possible not so.

 

[Mariposa Electrique]

The US granting the baby permanent residency without consulting it's own medical experts was also bizarre. There are a lot of people to be disappointed with in this case.

They probably did so because, well, more than likely, this kid will die.

His condition has worsened and he's probably going to die soon.

Whatever opportunity he had for life and quality of life was denied to him by the NHS. Towards the end, the success of the legal battle didn't even matter, because they had delayed it sufficiently long enough to make whatever was once possible not so.

Yet, people still don't question whether how or why things have gotten this bad. I thought the job of the NHS was to provide healthcare to those who need it and want it, not make life altering decisions about who actually gets healthcare. Leftism has gotten way too powerful.

 

[Null]

Yet, people still don't question whether how or why things have gotten this bad. I thought the job of the NHS was to provide healthcare to those who need it and want it, not make life altering decisions about who actually gets healthcare. Leftism has gotten way too powerful.

Well just look through this thread. You have Brits cheering it on because they agree with this particular judgement, not realizing that they've essentially delivered habeus corpus for every resident in the UK unto the NHS.

 

[Ruin]

Well just look through this thread. You have Brits cheering it on because they agree with this particular judgement, not realizing that they've essentially delivered habeus corpus for every resident in the UK unto the NHS.

I don't understand the Brits. They want the state to have absolute authority on which people deserve to live and which don't and they're hell bent on surrendering their country to fundamentalist Islam and Wahhabism. Not even the Germans seem to hate themselves and want to destroy their own people and culture this much.

 

[Mariposa Electrique]

I don't understand the Brits. They want the state to have absolute authority on which people deserve to live and which don't and they're hell bent on surrendering their country to fundamentalist Islam and Wahhabism. Not even the Germans seem to hate themselves and want to destroy their own people and culture this much.

Where The Thing Free In Your Life Is Your Healthcare!

I can't believe a judge will get to decide whether or not this kid will die at home or not.

 

[Johnny Bravo]

Which is why the hospital saught the NBT treatment. They were the ones who told the parents about this experimental treatment.

But Charlie experienced significant brain seizures while the UK were applying for treatment. After his 17 day seizure-fest, GOSH said he had experienced irreversible brain damag and subsequently denied treatment they had tried to push for.

Can I get a source for this claim? This appears to kill the theory that this all had to do with universal healthcare if the hospital proposed the treatment in the first place.

 

[RomanesEuntDomus]

His condition has worsened and he's probably going to die soon.

Whatever opportunity he had for life and quality of life was denied to him by the NHS. Towards the end, the success of the legal battle didn't even matter, because they had delayed it sufficiently long enough to make whatever was once possible not so.

Afaik, there never was a chance of this kid ever making a full or even partial recovery.
At best, this treatment would have made a human-shaped vegetable that depends on machines need less machines to survive. Maybe.
Afaik, this whole thing would have created somewhat useful data for future treatments, but there we have the issue that using someone who can't object or consent for medical experiments is quite amoral depending on where you stand.
Believe it or not, denying the parents to do this strengthens and reinforces the rights of the individual since it can't be made to undergo pointless "treatments" against its will.

If this was a case about hippy-parents going to court so they can use some insane crystal-magic on their sick child instead of a conventional treatment and the NHS cockblocked that, we would not be having this conversation.

Well just look through this thread. You have Brits cheering it on because they agree with this particular judgement, not realizing that they've essentially delivered habeus corpus for every resident in the UK unto the NHS.

That's quite a hyperbolic oversimplification of the issue and the way the brits on this forum reacted tbh.
For one thing, this only concerns children and defends their personal rights.

Yet you behave like this is the first step to put people into NHS-mandated FEMA camps.

 

[captn_kettle]

Can I get a source for this claim? This appears to kill the theory that this all had to do with universal healthcare if the hospital proposed the treatment in the first place.

From the moment of his diagnosis
at GOSH, Charlie’s prognosis was known to be bleak. The early infantile onset of his
extraordinarily rare disease, his generalised myopathy and the respiratory failure which
left him dependent on a ventilator, were all factors indicating that his life’s span was
likely to be very limited indeed. Despite the sombre prognosis, GOSH’s mitochondrial
expert contacted counterparts across the world, including Professor Hirano, to explore
the possibility of experimental treatment, NBT.

From the statement from GOSH: http://www.gosh.nhs.uk/news/latest-...tion-statement-issued-high-court-24-july-2017

It's not rare to see hospitals up and down the country seeking experimental treatment, especially if the parents ask for it. If the board agree to fund it, patients go and have the therapy abroad. If successful, it strengthens the case to bring said treatment to the UK.

GOSH are the leading hospital for children's care and are often in talks with people abroad providing experimental treatment, as well as using experimental treatment in their own hospital.

 

[Johnny Bravo]

From the statement from GOSH: http://www.gosh.nhs.uk/news/latest-...tion-statement-issued-high-court-24-july-2017

It's not rare to see hospitals up and down the country seeking experimental treatment, especially if the parents ask for it. If the board agree to fund it, patients go and have the therapy abroad. If successful, it strengthens the case to bring said treatment to the UK.

GOSH are the leading hospital for children's care and are often in talks with people abroad providing experimental treatment, as well as using experimental treatment in their own hospital.

Sounds like "the Professor" really fucked the family and the hospital over.

 

[LulzKiller]

It's obvious at this point the American was obviously just selling the snake oil to the parents without even giving two shits if it actually worked, to the point where if he was British the likelihood is is that the General Medical Council would likely be holding a hearing on whether he should remain on the register.

 

[Null]

That's quite a hyperbolic oversimplification of the issue and the way the brits on this forum reacted tbh.
For one thing, this only concerns children and defends their personal rights.

Yet you behave like this is the first step to put people into NHS-mandated FEMA camps.

I don't understand how you can gloss over this. The government literally told these people they are forbidden from cooperating with American doctors, who have doctorates in medicine, from running experimental procedures on this child. Procedures designed with the sole, expressed purpose of treating people who have this condition. This isn't Gov't money, this is personal funds, raised specifically for this person.

What other issue is treated like this? When does the Government tell you that you can't take your child out of the country? When does the Government tell you that you can't seek medical treatment? When does the Government tell you that you can't spend your own money on medicine? When does the Government say they will arrest you if you do smuggle your own child out of the country upon your return?

These mandates are only made for people under arrest. For people purchasing crystal meth, or flying overseas to buy child brides. The medical branch of the state has told people what they can and cannot do with their own money and their own children.

If that doesn't make you mad because of the specific circumstances of this particular case, you're trust falling into the arms of a country that every single dystopian novel is based off of, from 1984 to V for Vendetta. The entire world of dystopian authors have seen the UK as being one breath away from a fucking nightmare police state. And then, as they start arresting people for saying "remove kebab" on Twitter and demanding you unplug your potato-child from life support, everyone from the country is just like "eh fook em m8".

 

[RomanesEuntDomus]

I don't understand how you can gloss over this. The government literally told these people they are forbidden from cooperating with American doctors, who have doctorates in medicine, from running experimental procedures on this child. Procedures designed with the sole, expressed purpose of treating people who have this condition. This isn't Gov't money, this is personal funds, raised specifically for this person.

Experimental procedures where the overwhelmingly most likely outcome would have not benefited the child in the slightest.
Laxatives have "the sole, expressed purpose of treating people" who suffer from constipation, yet when you start vomitting feces, MiraLAX won't cut it as a treatment.

It was, apparently, too late for this treatment, which makes it entirely futile and pointless. That's the whole point I was making.

What other issue is treated like this? When does the Government tell you that you can't take your child out of the country? When does the Government tell you that you can't seek medical treatment? When does the Government tell you that you can't spend your own money on medicine? When does the Government say they will arrest you if you do smuggle your own child out of the country upon your return?

These mandates are only made for people under arrest. For people purchasing crystal meth, or flying overseas to buy child brides. The medical branch of the state has told people what they can and cannot do with their own money and their own children.

When the government is absolutely convinced that what the parents are trying to do is gonna make the child suffer without any chance of the child benifitting from it in the slightest.
If these people had decided to take their lethaly sick child to get help from some unwashed indian ayurverda master, the reacton would have been the same.
It's not a family that wants to spend a nice weekend at the californian beaches and being told they can't by the Ministry of Love.
It's 2 parents desperately clinging to the idea that some experimental treatment will magically cure their child despite countless experts telling them that's not an option.
It's about the government telling them that it is not in the child's best interest to be forced to suffer through this.

I can't stress this enough:
By forbidding this, the government was protecting the child's rights. The individual's rights outrank the authority of the parents.

Last year, we had a thread about some religious nutjobs that let their child die of an appendicitis cause no matter how much they prayed unsuccessfully, they just figured "Eh, let's do it with a bit more fervor in the morning - surely it'll work eventually" until their child died with agonizing pain.
Would you not agree that in such a case, some goverment authority stepping in to take away the kid and give it the propper treatment would have been a good thing?

You are entirely locked on how bad the UK is for not allowing this kid to get a treatment in the US while entirely disregarding how futile it apparently would have been in the first place.

 

[Null]

Experimental procedures where the overwhelmingly most likely outcome would have not benefited the child in the slightest.

It's a very good thing we have laymen like you to make these decisions on behalf of medical doctors.

Laxatives have "the sole, expressed purpose of treating people" who suffer from constipation, yet when you start vomitting feces, MiraLAX won't cut it as a treatment.

Abysmal analogy. Textbook strawman.

It was, apparently, too late for this treatment, which makes it entirely futile and pointless. That's the whole point I was making.

The treatment would have been more viable if the court didn't murder the child through bureaucracy by delaying the treatment for months on end.

When the government is absolutely convinced that what the parents are trying to do is gonna make the child suffer without any chance of the child benifitting from it in the slightest.

Suffer? In what regard? Is the crux of the argument not "it's a potato so just let it die"? If it's a potato, how does it suffer? Mentally well children suffer going through chemotherapy, but that is allowed, even if the cancer's survival rate is barely non-zero.

If these people had decided to take their lethaly sick child to get help from some unwashed indian ayurverda master, the reacton would have been the same.

Uh, okay. That doesn't help your argument. "My government treats snake oil and experimental medicine the same." Thank-you for proving my point: your government is autistic.

It's not a family that wants to spend a nice weekend at the californian beaches and being told they can't by the Ministry of Love.
It's 2 parents desperately clinging to the idea that some experimental treatment will magically cure their child despite countless experts telling them that's not an option.
It's about the government telling them that it is not in the child's best interest to be forced to suffer through this.

At what point do you realize how awful this sounds? There is a patient, a doctor has a treatment, the parents have money, and the government is threatening to imprison people over that transaction.

Where does the Government get to stop exerting this force? What if the Government decides to mandate abortions for this disease? Your logic applies to that equally. If you get scan of your fetus, they see that there is a 99% chance of it being born exactly like Charlie, then what?

If you're going to claim the NHS can't dictate to an expecting mother what to do with her body, then how can they threaten to imprison her for seeking treatment for that child after it's born? The NHS can obviously control people's actions by threat of imprisonment. The sentences "if you take that baby to get treatment, we will imprison you" and "if you give birth to that baby, we will imprison you" are not too distinct are they?

By forbidding this, the government was protecting the child's rights. The individual's rights outrank the authority of the parents.

The child's rights!? Like the right to seek treatment?? The only right being enforced here is the right to die! NHS went full fucking DIGNITAS on a potato and you're jumping up and down cheering that no one had any fucking say in the matter besides the government.

You can stress it as much as you'd like mate, you're fucking wrong.

Last year, we had a thread about some religious nutjobs that let their child die of an appendicitis cause no matter how much they prayed unsuccessfully, they just figured "Eh, let's do it with a bit more fervor in the morning - surely it'll work eventually" until their child died with agonizing pain.
Would you not agree that in such a case, some goverment authority stepping in to take away the kid and give it the propper treatment would have been a good thing?

Your "religious nutjobs" are not doctors with fucking degrees in medicine bro.

You are entirely locked on how bad the UK is for not allowing this kid to get a treatment in the US while entirely disregarding how futile it apparently would have been in the first place.

Because that's the only fucking thing that matters. You are completely oblivious to the broader implications in the fucking medical organ of government being able to dictate to its people that they can't even leave the country to pay for medicine.

If you can't see that you never will and you have no argument to offer. I understand fully your points and I don't care. Everything is trumped by the issue of government hostage taking.