Charlie Gard potentially granted US residency by congress to fly to US for treatment!

[Sorshen]

The treatment could provide the very data needed to give future kids a chance at being saved.

So the kid is basically a pithed lab rat/frog at this point.

[Xandrigity]

They have a GoFundMe donation page that has raised about 1.3m right now. So, random people are paying for it.

1.3 million won't go far. Especially for long term care of a kid like that. He will become a ward of the US. Chronic care for a ventilated patient is extremely expensive. Not to mention the cost of transporting a critically ill patient from Europe to the US. What's been be raised will quickly exhausted.

[Venant]

He doesn't have a chance at life. At best, the experimental treatment might buy him a few additional weeks of suffering in his current state, which requires constant life support as it is. There is no chance that this treatment would cure the underlying condition or lessen Charlie's symptoms.

There is an argument that the state shouldn't have to pay for the treatment. I don't see how you can argue that the state should have the power to prevent private citizens from seeking treatment in another country through private means.

[Gorsameth]

There is an argument that the state shouldn't have to pay for the treatment. I don't see how you can argue that the state should have the power to prevent private citizens from seeking treatment in another country through private means.

Because the private citizen in question cannot make that decision on the grounds of being braindead. And the parents do not have supreme rights over their child in Europe. When doctors and parents disagree someone has to arbitrate (the state in this case).

[D3thray]

He doesn't have a chance at life. At best, the experimental treatment might buy him a few additional weeks of suffering in his current state, which requires constant life support as it is. There is no chance that this treatment would cure the underlying condition or lessen Charlie's symptoms.

I agree with Endus (see it happens!). The doctors and judges previously involved all have families, probably children of their own. It's too easy to dehumanize them as 'da gubmint' when you disagree with them. The media narrative nearly always omits key details. Those intimately involved must have found reason enough to take Charlie's parents all the way up the courts knowing full well the agony his parents were facing. Balancing that with their duty to do no harm they thought it best to keep him where he is.

I don't know that there is going to be a right answer here, or even a good one, but the judgment of Charlie's doctors should carry a whole lot more weight than I feel it is being given.

[Orange Joe]

FML, No as stated there doctors performing the treatment believe there is a chance of improvement. They wouldn't even attempt the procedure if they believed there was zero chance. However, like any experimental treatment ( like many that we have as standard treatments today), they aren't going to let valuable data go to waste. This sort of knee jerk reaction as a lot of the opposition seems to have is a sign you aren't thinking clearly.

There is a 10% chance he might get some muscle movement back. Thats it.... He will still need constant medical care the rest of his life.

[Sorshen]

I'm the one not thinking clearly? lol
More like $2-3mil make people say the darnest things about other people's prospects.

[Jastall]

1.3 million won't go far. Especially for long term care of a kid like that. He will become a ward of the US. Chronic care for a ventilated patient is extremely expensive. Not to mention the cost of transporting a critically ill patient from Europe to the US. What's been be raised will quickly exhausted.

Don't forget that experimental treatment doesn't come cheap, especially if it's tailored to such a rare condition.

[Orange Joe]

It may sound callous to point out but, "long term" isn't really a thing in this case, I don't think. Because "the rest of his life" isn't really going to be all that long. He's alive only because of the machines keeping him that way as it is.

Yeah, I thought about adding that his life still wouldn't last long with the treatment, but decided I was too lazy to edit the post lol.

[Gorsameth]

Don't forget that experimental treatment doesn't come cheap, especially if it's tailored to such a rare condition.

Its not even tailored to his condition. Its a treatment for a similar kind of condition. Which is why there is no idea if it will even do anything. Its not intended or tested for his particular variation.

[Milchshake]

So what happens when his medical condition deteriorates after this treatment, and he's too sick to be moved again? Will he be a US resident indefinitely?

Meanwhile The White House has proposed nearly $6 billion in cuts to the Children’s Health Insurance Program, or CHIP, which provides health care coverage for 8.9 million low-income children. The president’s budget also proposes $1.4 trillion in cuts over the next 10 years to Medicaid, which provides health care to approximately 37 million more poor children.

But now they have a shiny new political prop.

[Zeth Hawkins]

I'm curious as to where the keep him alive forever artificially crowd sides with assisted suicide

While this response is hours late, and I have yet to read beyond this point, I am in favor of assisted suicide.

[Jastall]

Its not even tailored to his condition. Its a treatment for a similar kind of condition. Which is why there is no idea if it will even do anything. Its not intended or tested for his particular variation.

Splendid. So of course they will need to test more treatments afterwards. I've been through this route myself with family, it's not pretty, and while in my case it was covered by the State, the kid's family ain't so lucky.

As for the question someone asked about assisted suicide, I'm in favor of it too. So long as it's the decision of the patient, and that more than one doctor is involved in the process. There comes a point where being alive means nothing if you're in constant pain and you just cannot take it anymore, and are going to die regardless.

[Poopymonster]

Other people in this thread:

"You can't walk, talk, breath, move, see, hear, or do ANYthing else a human being should be able to do on their own, and you'll never have a quality of life such that you can't achieve ANY amount of autonomy...so let's keep you alive attached to machinery for as long as we can!"

Yeah, fucking retarded.

Where have I read about this before?

[Wyrt]

There comes a point where being alive means nothing if you're in constant pain and you just cannot take it anymore, and are going to die regardless.

You mean like where Charlie Gard is now then?

[Poopymonster]

Dr Michio Hirano, who is a world expert on the nucleoside treatment being denied to Charlie, from the Columbia University Medical Center in New York believes he can legitimately help Charlie. What we have here is a brutal difference between European approaches to medicine, vs US approaches to medicine.

I remember during the actual trial when Dr Hirano was testifying, he said something interesting "If Charlie had been born in the US, and we discovered the mitochondrial DNA depletion syndrome, he would have started receiving the treatments without delay if his family could pay" (paraphrase).

For some of us, this is becoming both a case of "How far will a parent go", and also a case of "does letting the government determine your value as a life devalue that life?"

There are levels of politics here that are sickening. And I am not talking about international politics. I am talking about the politics of the court and the hospital Charlie is staying at. It would be one thing if random doctors were claiming they could help, without specific knowledge. This dr is WORLD RENOWNED for his knowledge of THIS VERY DISEASE. That, to me, is what makes the case so ridiculous. The hospital and Human rights (WHAT A LAUGH) courts are being feckless, and padentic about making sure this child dies.

Added bolded to show a more accurate portrayal in the states.

[WskyDK]

Paying for the treatment means fuckall.

If it cost a dollar, it would still be wrong.

[Jastall]

You mean like where Charlie Gard is now then?

Yes, but the difference is that he's not conscious and cannot make the decision. While I think efforts to prolong his life are futile, that the US doctors are banking on a forlorn hope and that the dolts in Congress are profiteers of the highest order, I'm still unsure that this verdict should be thrust upon desperate parents.

Yet at some point someone has to make the call, I suppose.

[WskyDK]

Yes, but the difference is that he's not conscious and cannot make the decision. While I think efforts to prolong his life are futile, that the US doctors are banking on a forlorn hope and that the dolts in Congress are profiteers of the highest order, I'm still unsure that this verdict should be thrust upon desperate parents.

Yet at some point someone has to make the call, I suppose.

Had to make he call *again*

[Surfd]

Well I hope it works out.

You hope the family flies to the USA, wastes nearly a million dollars, and that maybe, just maybe, the treatment works (about a 0.1% chance) so that the kid actually regains enough mental capacity to fully understand how much he is suffering, just so he can suffer more and then die (his death is 100% guaranteed)?

That's rather sick.

Edit: Never mind, just found out that the "Treatment" is only to see if they can maybe restore a bit of muscle functiuonality. So the kid is still going to be a permanent vegetable, still in permanent pain, and still attached to machines for the rest of his incredibly short, incredibly painful life. At least he will never be cognizant enough to know that his parents are torturing him.

- - - Updated - - -

Where have I read about this before?

Except that the baby is currently little better than a vegetable mentally, and will NEVER get better.