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ppauper
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Re: Help Terri by eating lots of food on Easter

July 6th, 2017, 7:39 am

as expected, British Hospital Refuses to Transfer Charlie Gard to Vatican Hospital Offering to Care for Him

wilmotters will recall that the world-renowned Ospedale Pediatrico Bambino Gesù in Rome offered their services
“Minister Boris Johnson expressed gratitude and appreciation for the Italian offer but explained that legal reasons prevent Britain from accepting it,” a statement from the Italian foreign ministry read.

"legal reasons" ... could the man be any more vague. At best, he's being disingenuous, and if I ever had any respect for Johnson I've lost that respect now
it's my understanding that the british hospital has seized possession of little charlie gard by completing a government form ("Deprivation of Liberty Safeguards", where the use of the term "Safeguards" is orwellian: this was not a case of putting limitations on an existing process, this was the introduction of a process that allows hospitals to seize control of people without even needing a judge to sign off on it, so rather than introducing safeguards they removed the existing safeguards. Essentially it allows a hospital to put in place a court order without the hassle of having to convince a court and a judge)
That same british hospital could complete a second form to suspend the order which would probably take all of 5 minutes.
They could also amend the order to transfer charlie's care to the Bambino Gesu hospital, and that's probably the issue: once charlie is out of the UK, their orders have no effect and there would be nothing stopping charlie's parents from taking charlie to the medical facility in florida that has offered to treat him
 
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ppauper
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Re: Help Terri by eating lots of food on Easter

July 10th, 2017, 9:36 pm

update

2 republican congressmen, Reps. Brad Wenstrup (OH) and Trent Franks (AZ), are planning to introduce legislation to grant little charlie gard and his parents permanent residence status in the US

also, still another hospital has offered to treat charlie, New-York Presbyterian Hospital and Columbia University Irving Medical Center
 
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Cuchulainn
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Re: Help Terri by eating lots of food on Easter

July 11th, 2017, 9:12 am

Charlie Gard is not Syrian.
http://www.datasimfinancial.com

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ppauper
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Re: Help Terri by eating lots of food on Easter

July 11th, 2017, 9:35 am

Cuchulainn wrote:
Charlie Gard is not Syrian.

the previous one (aysha king) had an iranian mother
 
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ppauper
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Re: Help Terri by eating lots of food on Easter

July 12th, 2017, 12:45 pm

pence was on the Limbaugh,
“The heartbreaking story of the 11-month-old Charlie Gard in England is a story of single-payer healthcare.
“We hope and pray that little Charlie Gard gets every chance, but the American people oughta reflect on the fact that for all the talk on the left about single-payer, that’s where it takes us”

He's right of course.
If you look back at the Weimar republic, which cuch reminds us was before Ben & Jerry's, you see the same issues, physicians who view themselves as working for the state not the patient, and the eugenics movement, the concept of a life not worth living
 
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Paul
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Re: Help Terri by eating lots of food on Easter

July 12th, 2017, 1:24 pm

In the US the doctors work for the insurance companies sadly.

I have a direct comparison between US and UK healthcare for the same condition. I'd say there's a factor of 10 in the cost. And the US process, before and after, make you feel worse.

I have experience of hospitals in:

UK
US
Germany
France
Argentina
Dubai

The first two are always packed, the rest empty. I don't know why.
 
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Traden4Alpha
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Re: Help Terri by eating lots of food on Easter

July 12th, 2017, 1:54 pm

Actually, in the US, the doctors & hospitals play a very adversarial game with the insurance companies and patients.

The doctors & hospitals set outrageously high "list" prices and then graciously discount them down to the merely exorbitant. And they do this, in part, because the US government sets mandated reimbursement levels for Medicare & Medicaid (the US single-payor system for healthcare of retirees and the poor) at levels below cost.

Anyone who's uninsured gets that 10X list price on their bill which many just pay because they don't know they can fight it. And even if they do fight it, the bill will get knocked down 50% to 75% which sounds super but it means the bill is still 5X to 2.5X higher than it should be. It's not unlike the price strategies that trinket hawkers in the developing world use on tourists -- ask for 10X the cost and then offer a "special deal" of only 5X if the tourist tries to haggle.
 
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Paul
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Re: Help Terri by eating lots of food on Easter

July 12th, 2017, 5:58 pm

Traden4Alpha wrote:
Actually, in the US, the doctors & hospitals play a very adversarial game with the insurance companies and patients.

Yes, and the insurance companies always win! In my experience the insurance company dictated treatment. Partly against doctor's wishes. And then insisted on a course of action that may have exacerbated the condition, but crucially totally eliminated any further exposure for the insurance company.
I'm sure that there are some health things the US is better at but my preference would mostly be for treatment in the UK, even though nurses often give the wrong medication!
In the US patients are seen as a source of profit. In the UK they are a pawn in the battle between the NHS and government. And they do sometimes get sacrificed!
There are also national differences concerning attitudes to health, exemplified by how people react to ambulances: In the UK cars almost always move out of the way of ambulances. In the US usually, but not always. In Argentina never, ever.
 
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Traden4Alpha
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Re: Help Terri by eating lots of food on Easter

July 12th, 2017, 6:25 pm

Yes, the insurance companies really do always win (although a number of them seem to have lost money of the Affordable Care Act because the incentives for healthy individuals to get health insurance are still fcuked in the US). In theory, insurance companies are pass-through entities such that any increases in payouts enable the company to justify higher premiums. Moreover, faced with a death-spiral condition of an increasingly expensive pool, they can dump the pool.
 
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ppauper
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Re: Help Terri by eating lots of food on Easter

July 15th, 2017, 8:36 am

someone made an obvious point to me the other day.
Because the disease which little charlie has is so rare (Mitochondrial DNA depletion syndrome), it will never be possible to run proper clinical trial: there just aren't enough patients. So any treatment will always be considered "experimemtal"

in other news, calls for a parental rights amendment to the US constitution are growing in libertarian circles to stop something like this happen in the US. Similar calls have been made in the past because of the "UN Convention on the Rights of the Child," which was signed by BJ Clinton but never ratified by the US Senate. "Rights of the Child" sounds wonderful, but it's actually about taking rights away from the parents and giving them to the state

aa

The hospital, meanwhile, offered an unapologetic defense of its decision in a submission to the High Court. The hospital's attorney, Katie Gollop, wrote that while the institution understands that Charlie's parents believe they alone have the right to decide the treatment for their son, the hospital is bound by different principles.
"A world where only parents speak and decide for children and where children have no separate identity or rights and no court to hear and protect them is far from the world in which GOSH treats its child patients," the hospital said.
(snip)
"Unlike the U.S.A., English law is focused on the protection of children's rights," said Jonathan Montgomery, professor of health care law at University College London. "The U.S.A. is the only country in the world that is not party to the U.N. Convention on the Rights of the Child; it does not recognize that children have rights independent of their parents."


Jonathan Montgomery is of course being disingenuous. The US does recognize that children have rights independent of their parents. The difference is that in the US, the presumption in a case like this is that the parents are in the right unless they have done something egregious, while in the UK it would seem as though the presumption is that the state is in the right.
 
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ppauper
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Re: Help Terri by eating lots of food on Easter

July 17th, 2017, 11:48 am

Charlie Gard's parents angry that baby's lawyer is head of charity that backs assisted dying

as I said months ago, the UK government has stripped away the parents' rights and appointed a leading advocate of "the right to die with dignity" to decide what little Charlie's "best interests" are.

see what I said back in April of this year
ppauper wrote:
?? "baby's lawyer??
ok
Barrister Victoria Butler-Cole, who was appointed to represent the eight month old, said proposed treatment in the US was "purely experimental" and continuing his life support would only "prolong the process of dying".

that I believe would be someone appointed BY THE UK GOVERNMENT so that it's the UK government that speaks for the baby not the baby's parents

ppauper wrote:
Yet the UK government seems to have appointed an attorney to "represent" the baby. Google tells me that she's a leading advocate of "the right to die with dignity." There's an old adage that when you task someone to investigate something, the single most important factor deciding the outcome is who you chose. I suspect there was never any doubt which side the attorney would come down on, which is no doubt why she was chosen.
Rather than the presumption being that the parents are correct unless the state can show that they are unfit parents, the presumption in the UK seems to be that it is the state who decides for a child with the onus on the parents to go to court to fight for the right to decide for their own child, and they seem to have to meet a very high hurdle to succeed.
Imagine a defendant in a criminal case having to prove beyond a reasonable doubt that he was innocent rather than the state having to prove beyond a reasonable doubt that he was guilty.
 
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ppauper
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Re: Help Terri by eating lots of food on Easter

Yesterday, 2:03 pm

the british hospital has run out the clock on charlie's fight

charlie's parents have ended their fight, because the condition of their son has worsened during the protracted legal fight.

charlie was admitted to the British hospital 10 months ago, charlie's parents started the crowdfunding page to take charlie to the US for treatment 6 months ago, and have been waging a 5 month legal battle for charlie's right to have medical treatment.

I don't know at what point it became too late.
 
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ppauper
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Re: Help Terri by eating lots of food on Easter

Yesterday, 2:29 pm

cuch made a crack earlier about charlie not being a syrian refugee
there was a similar case in Canada a few years ago, in which the family were lebanese (the father was muslim and the mother catholic)
Joseph Maraachli case
family in windsor, ontario, canada. Kid got sick, they took him over the border to detroit where he was treated and got better.
Unfortunately, they went on a trip to Toronto (4 hour drive) and he got sick on the way back so they pulled off the highway and took him to the nearest hospital. Which wanted to kill him.
In that case, the kid was allowed to go to the US for treatment, with a US charity picking up the tab for a private jet and the treatment.
Interestingly, he didn't get a proper diagnosis from the Canadian hospitals,
Doctors at the SSM Cardinal Glennon Children's Medical Center diagnosed Joseph with Leigh's disease, a rare neurometabolic disorder which causes the degeneration of the central nervous system. The disease is usually inherited, but no genetic link for Joseph was found after his parents were tested
 
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ppauper
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Re: Help Terri by eating lots of food on Easter

Yesterday, 3:44 pm

Charlie Gard´s parents´ emotional statement in full

they seem to be saying that if charlie had been treated when they first asked, then charlie would have had a real chance of getting better.
Instead, the british hospital ran the clock out
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