Yet another tweet from President: Charlie Gard

[_The CCC]

At the same time Republicans want to drop 32 million American's from health care coverage against their and their family's interest. They have deliberately turned this into a international Terri Schaivo melodrama for American politics. Drumpf doesn't give a Rat's Behind about this sad little boys life.

[_Jersey Girl]

If anyone is interested, here's a wiki on Charlie Gard's condition.

https://en.wikipedia.org/wiki/Mitochond ... n_syndrome

Bolded is what form Charlie has.

Encephalomyopathic form[edit]

SUCLA2 and RRM2B related forms result in deformities to the brain.[8] A 2007 study based on 12 cases from the Faroe Islands (where there is a relatively high incidence due to a founder effect) suggested that the outcome is often poor with early lethality.[13] More recent studies (2015) with 50 SUCLA2-mtDNA DS patients with range of 16 different mutations show a high variability in outcomes with a number of patients surviving into adulthood (median survival was 20 years. There is significant evidence (p = 0.020) that SUCLA2 patients with missense mutations have longer survival rates. This could support the hypothesis that some missense mutations are associated with some residual enzyme activity - this should be interpreted cautiously given the small number of patients and the lack of direct experimental evidence of residual activity.[2]

RRM2B mutations have been reported in 16 infants with severe encephalomyopathic MDS that is associated with early-onset (neonatal or infantile), multi-organ presentation, and mortality during infancy.

[_Jersey Girl]

At the same time Republicans want to drop 32 million American's from health care coverage against their and their family's interest. They have deliberately turned this into a international Terri Schaivo melodrama for American politics. Drumpf doesn't give a Rat's Behind about this sad little boys life.

Oh don't worry, I was getting there.

Yes, Congress managed to move on this story while the so-called "reconciliation" health care bill sits dead in the water. The irony of that isn't lost on me.

I disagree that this has been turned into an international TS melodrama for political purposes. Could that be the case? Perhaps so, but Charlie's family did the digging into treatment options, Charlie's family raised the money for him to travel (and then some), a doctor from Columbia U chose to go over and examine him on his own dime, and so if you want to make this out to be political grandstanding, I do think you're wrong.

Trump did issue a tweet/statement saying that the US would be delighted to help the family. So (essentially) did the Pope when the Vatican offered to take Charlie to their privately owned hospital.

If Trump offered to help and told Congress to do something to make it happen, and Congress did it. I'm good with that.

Let's see if he has the same influence regarding our own domestic health care bill. He wants Reps to vote on a health care bill that's a piece of crap. He claims that the solution is to get more Republican's in office.

The solution is to come up with a plan that doesn't entirely screw US citizens in the butt (I believe it's actually 22 million) or perform repairs on the ACA, which isn't going to happen because Trump is hell bent on branding the Obama administration off the planet.

In any case, I'm happy to hear that Charlie Gard's parents can pursue the avenue of experimental treatment that they wanted for their son. From what I've read about the treatment (nucleoside bypass therapy) they'll know if it's successful in approximately 6 weeks. It has had success in pediatric patients whose conditions are similar, so who knows. It's a crap shoot. I'm glad that Charlie Gard's parents get their chance to roll the dice and give their ideas a try, because God knows if this were Trump's grandkid, they'd already be set up in Columbia undergoing treatment and that goes for any other high profile filthy stinking rich person in both the US and the UK.

[_Chap]

I'm glad that Charlie Gard's parents get their chance to roll the dice and give their ideas a try, because God knows if this were Trump's grandkid, they'd already be set up in Columbia undergoing treatment and that goes for any other high profile filthy stinking rich person in both the US and the UK.

Please excuse my repeating this for the nth time: the issue in the court case was NOT whether it was worth spending money on further treatment for this child. Money was never a deciding factor. The parents had in any case already raised all the money required to take the child to the US for the (very, very, experimental, not even tried on a sick mouse with this child's disorder) treatment to be tried.

The issue was (I say it again) whether by moving the child who is on heavy life support and is thought by his doctors to be in some suffering, round the world to be treated, the chances of possible benefit were sufficient to outweigh the certainty that the child would undergo further suffering. The parents said yes. The doctors of Great Ormond Street hospital and others said not. So the court had to decide. And it decided on the side of the doctors. That is what the courts are for - and I am glad they do that job, since, sadly, there are times when the desperate optimism of parents may end up doing the child more harm than good.

After that judgement, claims were made that there was unpublished evidence showing that the chances of treatment benefitting the child were higher than had been suggested by the evidence previously presented to the court. The doctors of Great Ormond Street hospital therefore asked the court to re-open the case to look at any new evidence. That decision shows that they are conscientious medical professionals with the child's best interests at heart.

US neurologist Dr Michio Hirano flew back to New York last night after discussing the possible use of nucleoside therapy to treat the child. The court will now reconvene to consider whether the original decision against further treatment should stand.

All this is duller than the notion that all the child's parents need is more money, and then all would be well and the child would get better. But it has the merit of being true.

[_Jersey Girl]

I'm glad that Charlie Gard's parents get their chance to roll the dice and give their ideas a try, because God knows if this were Trump's grandkid, they'd already be set up in Columbia undergoing treatment and that goes for any other high profile filthy stinking rich person in both the US and the UK.

Please excuse my repeating this for the nth time: the issue in the court case was NOT whether it was worth spending money on further treatment for this child. Money was never a deciding factor. The parents had in any case already raised all the money required to take the child to the US for the (very, very, experimental, not even tried on a sick mouse with this child's disorder) treatment to be tried.

The issue was (I say it again) whether by moving the child who is on heavy life support and is thought by his doctors to be in some suffering, round the world to be treated, the chances of possible benefit were sufficient to outweigh the certainty that the child would undergo further suffering. The parents said yes. The doctors of Great Ormond Street hospital and others said not. So the court had to decide. And it decided on the side of the doctors. That is what the courts are for - and I am glad they do that job, since, sadly, there are times when the desperate optimism of parents may end up doing the child more harm than good.

After that judgement, claims were made that there was unpublished evidence showing that the chances of treatment benefitting the child were higher than had been suggested by the evidence previously presented to the court. The doctors of Great Ormond Street hospital therefore asked the court to re-open the case to look at any new evidence. That decision shows that they are conscientious medical professionals with the child's best interests at heart.

US neurologist Dr Michio Hirano flew back to New York last night after discussing the possible use of nucleoside therapy to treat the child. The court will now reconvene to consider whether the original decision against further treatment should stand.

All this is duller than the notion that all the child's parents need is more money, and then all would be well and the child would get better. But it has the merit of being true.

So what you're saying is that if little Prince George or one of Victoria Beckham's kids was admitted to GOSH for the same condition, that the court would dictate to them that their child couldn't be transferred to the US and would assume custody of their child.

And the remark about Trump (included in the same sentence) had to do with the contrast between his wealth and access to health care vs the health care bill being stalled and ultimately putting millions of citizens at risk if/when it does pass without modification. Learn to ask a question now and then, instead of assuming what you think a person meant and going off on one of your self superior lectures. Otherwise buzz off.

[_Jersey Girl]

Chap if you think power, wealth and prestige don't win the day, then address how the court would have assumed custody of Prince George or one of the Beckham's children. No really, go ahead and give that crap your best shot.

[_subgenius]

That is what the courts are for - and I am glad they do that job, since, sadly, there are times when the desperate optimism of parents may end up doing the child more harm than good. .

Guaranteed death or possible cure.....the former being your definition of "better", the latter being "more harm" - Got it!

So what you are really saying is that the courts were merely adjudicating optimism.....Parents being denied "2nd opinion" or exercising their right to seek other treatments is something you are "glad" occurs via writ....great job!

At what point do you suppose the Doctors of Great Ormond have the authority to raise such a dispute? I mean is this not tantamount to the doctors accusing the parents of neglect or abuse? surely such dangerous parents should be brought up on charges by your reasoning, yes?

[_Chap]

Chap if you think power, wealth and prestige don't win the day, then address how the court would have assumed custody of Prince George or one of the Beckham's children. No really, go ahead and give that ____ your best shot.

Do you mind if we get back to the real world for the moment, and discuss the case before us, rather than amuse ourselves with fantasies?

Suggestion: if you are offended or annoyed by my contributions, put me on ignore. You're welcome to do so.

[_Jersey Girl]

Chap if you think power, wealth and prestige don't win the day, then address how the court would have assumed custody of Prince George or one of the Beckham's children. No really, go ahead and give that ____ your best shot.

Do you mind if we get back to the real world for the moment, and discuss the case before us, rather than amuse ourselves with fantasies?

Suggestion: if you are offended or annoyed by my contributions, put me on ignore. You're welcome to do so.

Would you mind terribly addressing the premise that was proposed to you in the above? If it's not too much of a burden to you, of course.

[_Chap]

Would you mind terribly addressing the premise that was proposed to you in the above? If it's not too much of a burden to you, of course.

Nope. Have fun discussing your what-ifs by yourself, if you want to. I'll stick to the real case referred to in the OP.