[Hong Wu]

http://www.standard.co.uk/news/uk/charl ... 93481.html

So, a big story for the past couple weeks is that there's a sick baby in the UK who might recover with better treatment. The UK's single payer system doesn't allow for private options. The parents would like to fly the baby to the US for better treatment than the UK's single payer system is willing to provide. UK courts have repeatedly denied them the ability to do this, saying that the child must stay in the UK and die.

My opinion on this is that the worldwide trend is to have a public option alongside private options. When people in the world's acid attack capital say no, you (or your baby) has to die because I couldn't afford something better myself, they are playing with fire. Yes, richer people have more privileges, animals are not equal with each other, you're the ones who keep saying people are animals, get over it.

[Decky]

You have totally misrepresented what it happening. The NHS won't allow them to needlessly prolong the vegetables suffering by taking it to a witch doctor in the US for some crackpot snake oil "treatment" that won't do anything. The reason they are not allowing them to take them is that the treatment does not work, if it worked the hospital would have released them. The kid can't even breath or move on his own and never will be able to do so, why prolong his suffering just to let some Yankee con artist pry some money from the family?

Also the UK most certainly does allow for private options, just like most Hong Wu posts this it totally devoid of any facts.

Off the top of my head there is the West Midlands Hospital, Spire Parkway Hospital, Birmingham Eye Hospital and of course the many BUPA facilities which are all private. If people want to know about this story or about medicine in the UK I would recommend doing some research rather than reading anything Hong Wu has written (in fact I would recommend that for all Hong Wu posts ).

[Bulaba Khan Jones]

The most important take away from the story about the baby is that it hasn't experienced any brain growth/development in over 3 months. The doctors concur that this isn't something the child can recover from. The baby is a vegetable, with no prospect of recovery or improvement, and no awareness of its surroundings. The parents are understandably distressed, with their only child being little more than living dead, but they are living in a fantasy world, and it is they who are cruel by refusing to face reality.

[Suntzu]

I guess the good news is that his care is not a financial burden on them, only on us. In fact, they are getting rich, more than $1,500,000 at last count.

[B0ycey]

The NHS won't allow them to needlessly prolong the vegetables suffering by taking it to a witch doctor in the US for some crackpot snake oil "treatment" that won't do anything.

The 'Witch Doctor' as you put it, is currently in the UK and is one of Charlie's doctors. He has had success with similar (less serious) cases in the US. I think you are doing him and Charlies parents an injustice by referring his treatments as just snake oils. His opinion is paramount I would say to the court's ruling next week.

Whether or not Charlie is going to improve or not is irrelevant in my eyes. If his brain is inactive as you suggest he would be unable to feel pain. With this in mind, why not exhaust all treatments to see if Charlie can improve and not just give up with death. And if the treatment does work, it could save the life of someone else in the future.

[Suntzu]

Why? Well, let's start with the premise that medical resources are finite and not free. In the U.S. there is a single child that has used more than $20,000,000 in medical care. How many African children would that save who only need a few bucks worth of vaccine or antibiotic.

[B0ycey]

Why? Well, let's start with the premise that medical resources are finite and not free. In the U.S. there is a single child that has used more than $20,000,000 in medical care. How many African children would that save who only need a few bucks worth of vaccine or antibiotic.

If the finances to buy his medical resources/treatment were from the public purse I would agree with you. But the funds are donations given by well wishers. Don't get me wrong, everything I read about this case, in the end I believe the outcome will be futile. Even the US doctor only gives Charlie a ten percent improval rating. Even if it was ten pencent of that, if I told you I could sell you a lottery ticket with a 100/1 chance of winning the jackpot, would you buy it at twice it's original value? The odds of victory are still remarkably small, but the rewards are great and tantalizingly possible. Charlie has nothing to lose. But he has everything to gain. And so could potentially the next person who suffers from the same condition.

[Suntzu]

I agree that folks should be able to try anything they can pay for, even witch doctors. Charlie is beyond suffering, now. He is just a pawn.

[snapdragon]

He's not necessarily beyond suffering. His medical team say that when someone is as ill as Charlie, it's difficult to for them to know.
It's illegal to experiment on anyone without their permission in Britain.
Charlie is both too young and too ill to give permission, therefore a legal guardian has been appointed to protect his rights.
As the experimental treatment is unlikely to have any benefit for Charlie, the chances of the high court allowing it are practically non existent.

edit: I'm very suspicious of this quack's motives in wanting to try his treatment on Charlie.

First he says he didn't think it would work after reviewing Charlie's notes in April, but as the parents had raised the readies, he'd be happy to take their money and do it.

Now he he's reported to have been trying to get GOSH to let him use Charlie as a lab rat as he's unlikely to find another subject, poor Charlie's condition being so rare.

Where does little Charlie's well being feature in this? His parents have become totally deluded and their attitude towards Charlie's medical team is losing them lot of sympathy over here.

[Hong Wu]

Why should the high court (government) be his guardian instead of his parents, getting to decide what experimental treatments are worth trying?

[LV-GUCCI-PRADA-FLEX]

Why? Well, let's start with the premise that medical resources are finite and not free. In the U.S. there is a single child that has used more than $20,000,000 in medical care. How many African children would that save who only need a few bucks worth of vaccine or antibiotic.

This is the realest thing you've ever posted, Suntzu. I think children should have the best care possible, within reason, but there are many children in the world that never get care because they can't afford it. Charlie's parents should do something more constructive with their money than to throw it away to some charlatan looking for a paycheck.

[snapdragon]

Why should the high court (government)

The high court is not the government in the UK. Indeed, a private individual took the government to court because they believed the government had overstepped the mark. What's more, they won their case. The judges agreed with her.

be his guardian instead of his parents, getting to decide what experimental treatments are worth trying?

The high court aren't Charlie's guardians. One has been appointed for him, as the law demands.
Charlie is a person with rights. It's important his rights are protected.

No one is claiming his parents don't love him, or care about him - but what they want to do is possibly not for Charlie's benefit, but for their own.
The hospital believe it's in Charlie's best interests to stop ventilating him and give him palliative care only until he dies.
The hospital has no right to override the parents' wishes, so they applied to the high court to decide.

[demima]

Absolute nonsense by Hong Wu to attack "socialised medicine" by using the case of a poor 11 month old suffering from a incurable mutation. If someone wants private medicine in the UK, there are no restrictions on them to get this.

Frequently asked questions about the Charlie Gard court case

Great Ormond Street Hospital has been contacted by many people who share our concern for Charlie, and his parents, and ask for information about the very difficult decisions surrounding Charlie’s care.

As this is a very complex case, we have provided the information below in the form of an FAQ to help those contacting us to understand how Charlie is being cared for at Great Ormond Street Hospital.

Full details about Charlie’s treatment remains confidential and the content of the FAQs is based solely on information that is already in the public domain as a result of the court process. No new information is included out of respect for Charlie and his family.

We hope that those contacting the hospital respect the confidentiality of Charlie and his family and so appreciate that we cannot respond to individual requests for information.

If you would like to read the full details of the legal decisions, please refer to the following sources:

High Court decision on the British and Irish Legal Information Institute website.
Court of Appeal decision on the British and Irish Legal Information Institute website.
Supreme Court decision available from the UK Supreme Court's You Tube channel.

Who is Charlie Gard?
Charlie Gard is a GOSH patient who is currently in our intensive care unit.

What is his condition?
Charlie’s condition is exceptionally rare. He suffers from an inherited mitochondrial disease called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, referred to generally as “MDDS”. Charlie suffers specifically from the RRM2B mutation of MDDS.1

Charlie’s brain, muscle and ability to breathe are all severely affected. In addition, Charlie has congenital deafness and a severe epilepsy disorder. Charlie's heart, liver and kidneys are also affected.1

Charlie has severe progressive muscle weakness and cannot move his arms or legs or breathe unaided.1

Charlie's eyelids cannot stay open and his eyes point in different directions because of muscular weakness. Charlie’s retina would struggle to develop and his brainwaves suggest that he is not going to be able to lay down normal visual patterns that should be learned at an early age. Eyesight is not something you’re born with, it develops over time.2

Why is there no treatment available at GOSH?
There is no cure for Charlie’s condition which is terminal. GOSH explored various treatment options, including nucleoside therapy, the experimental treatment that one hospital in the US has agreed to offer now that the parents have the funds to cover the cost of such treatment. GOSH concluded that the experimental treatment, which is not designed to be curative, would not improve Charlie’s quality of life.

How did GOSH come to this decision about his treatment?
GOSH’s clinicians had to balance whether this experimental treatment was in his best interests or not.

One of the factors that influenced this decision was that Charlie’s brain was shown to be extensively damaged at a cellular level. The clinician in the US who is offering the treatment agrees that the experimental treatment will not reverse the brain damage that has already occurred.

The entire highly experienced UK team, all those who provided second opinions and the consultant instructed by the parents all agreed that further treatment would be futile – meaning it would be pointless or of no effective benefit.

Why is there a court process?
When parents do not agree about a child’s future treatment, it is standard legal process to ask the courts to make a decision. This is what happened in Charlie’s case.

What is the legal process?
GOSH applied to the High Court for judges to decide whether withdrawal of ventilation and providing palliative care instead of experimental treatment was in Charlie’s best interests.1

The High Court ruled this was in Charlie’s best interests on 11 April 2017.

Charlie’s parents then appealed to the Court of Appeal.

The Court of Appeal ruled on 25 May 2017 that the High Court decision still stood and that it would be in Charlie’s best interests to be allowed to die with dignity.

The parents have applied to appeal to the Supreme Court. The Supreme Court ruled on 8 June 2017 that the Court of Appeal and the High Court decision still stood and that it would be in Charlie’s best interests to be allowed to die with dignity.

Why has the legal process lasted so long?
Legal processes take time and the courts are doing their best to expedite the process. All parties are adhering to the legal process.

The parents have raised money for the treatment, why can’t it take place?
The High Court and the Court of Appeal have ruled it is not in Charlie’s best interests to receive the experimental treatment in the US.

Even if the treatment does not work for Charlie, won’t it help other children in the future?
The courts base their decisions for treatment on what is in Charlie’s best interests, not what is in the best interests of medical science.1

What about the parental rights?
Although Charlie’s parents have parental responsibility, overriding control is by law vested in the court exercising its independent and objective judgment in the child’s best interests.1

For more details on parental rights during medical treatment, please access the British Medical Association website.

What can you tell us about Charlie’s care?
While we cannot discuss confidential information about Charlie’s care, any child who is as unwell as Charlie will receive round the clock care from a team of highly experienced and specialised nurses, doctors and other health professionals.

Care for children who are ventilated, as Charlie is, might include suctioning to take out extra fluid when a child is not able to cough for themselves, having their vital signs constantly monitored, regularly turning a child to try to prevent pressure sores if they are unable to move independently and trying to ensure a child’s skin is in optimal condition even though they are constantly connected to a ventilator.

In his High Court ruling, 11 April 2017, Mr Justice Francis said: “Charlie has been served by the most experienced and sophisticated team that our excellent hospitals can offer.”1

In the Court of Appeal ruling, 25 May 2017, Lady Justice King said: “Charlie and his parents have the benefit of being treated at not only the centre of excellence that is Great Ormond Street Hospital, but of his having been under the care of a world-leading expert on mitochondrial disorders. I would wish to acknowledge the skill and care given to Charlie by the doctors and nurses at Great Ormond Street.”2

If the court rules in favour of a withdrawal of treatment order will the life support machine be turned off straight away?
At Great Ormond Street Hospital, our priority in situations like this is to work closely with the family to discuss the next steps in their child’s care. In Charlie’s case we have been discussing for many months, how the withdrawal of treatment may work. There would be no rush for any action to be taken immediately. Discussions and planning in these situations usually take some days – based on the experience of our clinical teams.

http://www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

[Hindsite]

Absolute nonsense by Hong Wu to attack "socialised medicine" by using the case of a poor 11 month old suffering from a incurable mutation. If someone wants private medicine in the UK, there are no restrictions on them to get this.

It appears that in the UK a judge decides who can get private medical care. If everyone had your attitude, we would have even more incurable diseases with no prospect of anyone ever trying to find a cure. Thank God not all people have your defeatist attitude.

[snapdragon]

It appears that in the UK a judge decides who can get private medical care.

Certainly not. That is American right wing nutjob propaganda.

If everyone had your attitude, we would have even more incurable diseases with no prospect of anyone ever trying to find a cure. Thank God not all people have your defeatist attitude.

If everyone had yours, nobody would have the right to refuse to be used as a lab rat.

[Hindsite]

Certainly not. That is American right wing nutjob propaganda.

If everyone had yours, nobody would have the right to refuse to be used as a lab rat.

I am only familiar with left-wing nutjob propaganda.
Receiving medical treatment is not the same as being used as a lab rat.
I do not believe a human being should be denied the right to refuse being used as a lab rat. I also do not believe a human being should be refused the right to seek the medical treatment of their choice or to volunteer to be used as a lab rat.

HalleluYah
Praise the Lord

[snapdragon]

I am only familiar with left-wing nutjob propaganda.

You're kidding yourself. The American right have been using this case to try to discredit UHC

Receiving medical treatment is not the same as being used as a lab rat.

Of course not, but there is no medical treatment anywhere in the world that can help Charlie. His parents want him to receive medication that hasn't even been tested on mice.
The doctor offering it has not shown any kind of proof that Charlie could benefit from it.

I do not believe a human being should be denied the right to refuse being used as a lab rat. I also do not believe a human being should be refused the right to seek the medical treatment of their choice or to volunteer to be used as a lab rat.

Good. Then you'll agree someone as ill and as young as Charlie shouldn't be used as one.

HalleluYah
Praise the Lord

Amen to that.

[Hindsite]

You're kidding yourself. The American right have been using this case to try to discredit UHC

Of course not, but there is no medical treatment anywhere in the world that can help Charlie. His parents want him to receive medication that hasn't even been tested on mice.
The doctor offering it has not shown any kind of proof that Charlie could benefit from it.

Good. Then you'll agree someone as ill and as young as Charlie shouldn't be used as one.

The way I see it is that his parents, who love Charlie more than anyone else, are seeking the best possible medical care to hopefully save their son's life. They are surely not thinking of charlie in terms of a lab rat as you do.

I am wondering if all those that think this American doctor is a quack or fraud would change their minds if the doctor tells the Judge that the treatment will not help Charlie. Probably not.

[Suntzu]

The doctor's comment was he had looked at the results of the tests and they were a sad read. It doesn't sound promising.

[Hindsite]

The doctor's comment was he had looked at the results of the tests and they were a sad read. It doesn't sound promising.

It may have been a different read if Charlie had received the best treatment from the very beginning. But I guess we will never know now. Well, so much for that. I feel sorry for the parents, knowing that they will soon be losing their beloved son.