Britain's Top Court Won't Let Dying Baby Go to US

[Arcangl86]

Let's not go there with UK healthcare. (I can come back to it if you wish....you must admit there are some issues, however.)

Your opinion is noted regarding this child and who has the authority to decide if this child lives or dies.

"The Thinning" comes to mind.

Thank you kindly.

An insurance company wouldn't have approved this either, so it's not indicative of a problem with single payer.

 

[ThatRobGuy]

Let's not go there with UK healthcare.

You went there first with your post suggesting that this action by the courts equated to a "death panel"

Your opinion is noted regarding this child and who has the authority to decide if this child lives or dies.

Again, you keep wording things in such a way to give the impression that this procedure is even the least bit credible.

It's not a matter of "lives or dies", it's a matter of "dies or dies while the parents get scammed out of $750,000".

Like I said before, this isn't as if the UK courts were telling the parents that they weren't allowed to bring their child the US to have pediatric cancer treated by St. Children's Hospital. Parents from UK (and all over the world) do that on a fairly regular basis with no issues whatsoever. Yet, you keep pretending as if it's the same thing.

The courts are not condemning this child to death...the disease is doing that. And since this procedure is not a viable treatment, your statements about the implications of the ruling are invalid.

Thus far, you've provided no information that suggests that this procedure is credible.

You just continue to reply back with emotionally charged buzzwords and phrases about "life or death" and "death panels" while ignoring the extensive parts of my posts that explain in detail why this is a quack procedure.


In order for your point to have merit, this procedure in question must be have proof of efficacy or at the very least, being offered in the form of a clinical trial by a credible medical institution. Do you have any scientific citations you can provide that would indicate that this procedure they're seeing is any way a viable treatment option for this child?

If you don't have any scientific research citations to support this procedure, then you can't keep trying to depict this as if the UK courts are "playing god".

 

[brinny]

You went there first with your post suggesting that this action by the courts equated to a "death panel"

Again, you keep wording things in such a way to give the impression that this procedure is even the least bit credible.

It's not a matter of "lives or dies", it's a matter of "dies or dies while the parents get scammed out of $750,000".

Like I said before, this isn't as if the UK courts were telling the parents that they weren't allowed to bring their child the US to have pediatric cancer treated by St. Children's Hospital. Parents from UK (and all over the world) do that on a fairly regular basis with no issues whatsoever. Yet, you keep pretending as if it's the same thing.

The courts are not condemning this child to death...the disease is doing that. And since this procedure is not a viable treatment, your statements about the implications of the ruling are invalid.

Thus far, you've provided no information that suggests that this procedure is credible.

You just continue to reply back with emotionally charged buzzwords and phrases about "life or death" and "death panels" while ignoring the extensive parts of my posts that explain in detail why this is a quack procedure.


In order for your point to have merit, this procedure in question must be have proof of efficacy or at the very least, being offered in the form of a clinical trial by a credible medical institution. Do you have any scientific citations you can provide that would indicate that this procedure they're seeing is any way a viable treatment option for this child?

If you don't have any scientific research citations to support this procedure, then you can't keep trying to depict this as if the UK courts are "playing god".

It IS a matter of life and death.

Literally.

 

[Arcangl86]

It IS a matter of life and death.

Literally.

No. It's a matter of "death, or death and additional suffering"

 

[brinny]

No. It's a matter of "death, or death and additional suffering"

Your opinion is noted.

"The Thinning" comes to mind.

Praying.

 

[Arcangl86]

Your opinion is noted.

"The Thinning" comes to mind.

Praying.

It's not my opinion. There is no indication that it works at all.

 

[He is Risen 72]

Death panels in action.

 

[CRAZY_CAT_WOMAN]

It sad. Some people don't even want their kids. But these parents will do anything to try to keep their baby alive.

So then "die" is better than -- "won't work"????

Die, wont work. Means the treatment wont work. So in both cases he dies.

 

[brinny]

Death panels in action.

Exactly.

God help us.

Praying.

 

[ThatRobGuy]

It IS a matter of life and death.

Literally.

For it to be a matter of "life and death", then the procedure in question would need to be able to provide the prospect of life. Thus far, you have not demonstrated that it has.

If what you're saying is true, then you should be able to give us all an explanation of...
a) the procedure itself
b) why it's never worked before, but you think this time has a real shot of working
c) why the $750k price tag is justified... and I mean an answer as to why the procedure costs that much, not an emotional ploy answer of "because their child's worth it", I mean a technical explanation of why the "doctor" needs to charge that kind of sum for it.

You see, if this where a case where we were talking about a child with a brain tumor who's parents wanted to bring them to UCLA medical center to undergo radiotherapy for the price tag of $25,000, then I could easily answer all 3 of those questions in short order.

The fact that you won't even touch any of these questions after numerous requests shows that deep down, you know this procedure is scam, but your political beliefs won't allow you to admit that the UK court might be right about this one.

 

[HannahT]

I found another link of the story. Then another.

From what I'm reading it's a drug that can be given to the child. This poor thing has the rarest form of it, and the only one in the world with it. This child has already has irreversible brain damage caused by his condition, and it sounds like machines are the only thing keeping him alive. He is also a patient that is worse off than any patient that has tried this medicine - that they call therapy.

I have to wonder from what I'm reading if this poor thing would even survive the trip. This would be a tough call.

 

[ThatRobGuy]

Death panels in action.

I'll ask you the same questions I asked Brinny (perhaps you'll actually attempt to answer them)

First, To bring you up to speed with some of the other information I posted previously.
1) This isn't a viable procedure, it's "experimental" and not in the clinical trial sense, but in the "alternative medicine" sense.
2) It has been tried on 16 different people, and has never been shown to provide any benefit.
3) The only, even anecdotal, claim that it works comes from an American couple whose child had a much less severe version of this condition, and they credit the procedure for their child still being a live at age 5. --however, their child also underwent conventional pulmonology treatment with a regular physician, and for their child's particular variation (which again, was much less severe) the median survival age with conventional treatment is 20 years...so the fact that their child is still alive at 5 years doesn't demonstrate any deviation from the norm.
4) The "doctor", who still hasn't been named, wants to charge $750k to administer it.


So the questions I've been asking (and still haven't received an answer to)
If this truly is the case of the UK courts being a "death panel", then the following questions would need to be answered to validate that claim and give it substance:
Explain:
a) the procedure itself
b) why it's never worked before, but you think this time has a real shot of working
c) why the $750k price tag is justified... and I mean an answer as to why the procedure costs that much, not an emotional answer of "because their child's worth it", I mean a technical explanation of why the "doctor" needs to charge that kind of sum for it.
d) why, if this doctor really has discovered a viable treatment possibility for these types of mitochondrial defects, hasn't submitted his procedure for clinical trials at a credible medical research institution, and instead has opted to continue to charge people obscene amounts of money to perform it.

 

[ThatRobGuy]

From what I'm reading it's a drug that can be given to the child. This poor thing has the rarest form of it, and the only one in the world with it. This child has already has irreversible brain damage caused by his condition, and it sounds like machines are the only thing keeping him alive. He is also a patient that is worse off than any patient that has tried this medicine - that they call therapy.

I have to wonder from what I'm reading if this poor thing would even survive the trip. This would be a tough call.

Yep, in additional reading I did last night, I also found out that it's a drug that's administered. ...which quite frankly, makes the price tag on it even more absurd.

Like I touched on before, it's only ever been tried on a few people, and has never been shown to demonstrate any actual benefit.

 

[Freedom~Sprite]

The British government are fascist? I had no idea.
They tolerate Muslims implanting no go zones in Britain. The Parliament disarmed their people making them sitting ducks for terrorist scum now. But they won't let a baby go to America, let a baby travel, as if it is their call, so as to give them hope to live, because the British government ultimately wants a newborn baby to die with dignity. By government decree. The priorities are skewed here.

Hey parents, get on a plane and tell the British government what for. And don't go back.

 

[ThatRobGuy]

But they won't let a baby go to America, let a baby travel, as if it is their call, so as to give them hope to live, because the British government ultimately wants a newborn baby to die with dignity.

Like I mentioned to the other posters...people are referring to this like it's a credible medical procedure. That's not the case here...this is a charlatan selling false hope for $750,000.

The fact that people are ignoring that aspect puts a completely skewed context on this conversation.

The courts in the UK have never stopped parents from bringing their children over to the US to receive medical care (or even attempt clinical trials) from valid medical institutions and credible doctors if the parents choose that as an option. St. Jude Children's Hospitals and UCLA medical take dozens of pediatric cases from the UK every year.

This isn't that...and people shouldn't pretend that it is just to fit a political narrative.

This isn't like the courts saying "you can't take your child over to UCLA medical center to undergo an emerging cancer treatment clinical trial", this is more akin to the courts saying "no, you can't remove your child from tried and tested cancer treatments to haul them to the US and take them to The Burzynski Clinic". (a known fraud who's been charging people huge sums for false hope for 20+ years and has been in legal trouble several times for predatory practices)

I think the fact that the parents themselves have been tight-lipped about who this doctor is (who they claim has his own hospital) should be a bit of a red flag. Perhaps they were concerned that if actually provided that information, people might get on google, see who it is, and be less likely to donate to the crowdfunding campaign. So they worded things in their crowd funding campaigns pretty vaguely.

And based on the comments, people seem to be under the wrong impression about things. Just tons of comments like "US has some of the best hospitals in the world, why won't let the baby go there for treatment" would indicate that the vast majority of people have the wrong impression of what's happening here.


I can not find a single news story that identifies who this US doctor (who apparently has their own hospital/clinic), and haven't been able to find any court transcripts out there to read through to get the name of this US doctor. All of the articles that even mention them are saying "unnamed American".

 

[Nithavela]

Like I mentioned to the other posters...people are referring to this like it's a credible medical procedure. That's not the case here...this is a charlatan selling false hope for $750,000.

The fact that people are ignoring that aspect puts a completely skewed context on this conversation.

The courts in the UK have never stopped parents from bringing their children over to the US to receive medical care (or even attempt clinical trials) from valid medical institutions and credible doctors if the parents choose that as an option. St. Jude Children's Hospitals and UCLA medical take dozens of pediatric cases from the UK every year.

This isn't that...and people shouldn't pretend that it is just to fit a political narrative.

This isn't like the courts saying "you can't take your child over to UCLA medical center to undergo an emerging cancer treatment clinical trial", this is more akin to the courts saying "no, you can't remove your child from tried and tested cancer treatments to haul them to the US and take them to The Burzynski Clinic". (a known fraud who's been charging people huge sums for false hope for 20+ years and has been in legal trouble several times for predatory practices)

I think the fact that the parents themselves have been tight-lipped about who this doctor is (who they claim has his own hospital) should be a bit of a red flag. Perhaps they were concerned that if actually provided that information, people might get on google, see who it is, and be less likely to donate to the crowdfunding campaign. So they worded things in their crowd funding campaigns pretty vaguely.

And based on the comments, people seem to be under the wrong impression about things. Just tons of comments like "US has some of the best hospitals in the world, why won't let the baby go there for treatment" would indicate that the vast majority of people have the wrong impression of what's happening here.


I can not find a single news story that identifies who this US doctor (who apparently has their own hospital/clinic), and haven't been able to find any court transcripts out there to read through to get the name of this US doctor. All of the articles that even mention them are saying "unnamed American".

I really like how you're just keep on fighting against all hope.

 

[ThatRobGuy]

I really like how you're just keep on fighting against all hope.

Hope has nothing to do with it. If parent's want to take a child to get snake oil for a terminal illness and I opposed that, would that also be "fighting against hope"?

Hope is fine...nothing wrong with hope. I hope for lots of things. However, hope needs to be balanced with pragmatism, otherwise, it runs the risk of being false hope. Combine false hope with the reality that there are a lot of people out there that are more than eager to profit off of false hope, and you have the recipe for exploitation.

If I told a senile elderly person "quite giving money to that person online, they're not really a Nigerian prince and they're not going to send you a million dollars back", am I 'fighting against hope' in that scenario, or am I merely being pragmatic?


And...again, I like hope people who are opposing me in this thread are providing absolutely zilch in terms of citations, information, and content pertaining to this procedure. Literally every rebuttal I've seen thus far has been nothing more than a quick, one or two line platitude using emotionally charged verbiage.

 

[dgiharris]

Did you perhaps mean to put "wouldn't" instead of would?...I suspect that's the case since I think places like St. Jude do their experimental or "trial phase" procedures free of charge.

thanks yeah I meant wouldn't

To clarify my position, I'm not opposed to experimental medicine in regards to legitimate medical institutions experimenting with new concepts and performing clinical trials in a controlled and peer reviewed environment, in that regard, all medicine is "experimental" before it's mainstream. Sorry if I didn't express my viewpoint clearly on that...

I figured as such, i just wanted to clarify my position on the subject

Like I touched on before, that's the issue with these predatory experimental doctors. They encourage patients to still pursue conventional proven treatments while doing the experimental therapy, and when the patient survives (as many do on conventional proven treatments), they claim the success as their own..

I agree with what you are saying about those psuedo science crackpot con men, it is seriously bad science. You need an experimental group and a control group.

I know it may sound heartless, but the best course of action for experimental treatments is you find an experimental group of people who will die anyways or people who will not be able to procure the necessary conventional treatment, and then you experiment on this group with your experimental treatment. You generate data and then you compare your data to control groups and to the other conventionally treated groups.

It'd be sort of like if I made up some experimental treatment for Strep Throat involving injecting people with a combination of banana oil and magnesium...but still advised them "hey, while I'm treating you... still work with your regular physician and go through the 10-day course of antibiotics", and when the people, undoubtedly, recover from strep I say "hey, look at how many people have been cured during the time period they were undergoing my treatment" (notice the creative wording so I'm technically not lying)...I can cure you too...for the price of $10,000.

This reminds me a lot of the anti-vaxxer stuff. Pseudo science is a billion dollar industry. I'm not so sure why it is so appealing to the masses. I work with a guy who believes in all sorts of crazy logical fallacies as concerns medical treatments and technology... What is really surprising is when he goes on one of his rants that people listening will nod their heads at a few of his crazy points. One of which is his sentiment that natural herbs can cure everything but "they" don't want you to have the cures, so they manufacture ineffective medicines...

Then he rants about how the ancient "this" or "that" civilization that lived in some remote village or mountain top had people that lived to 100 years old healthy as an ox and they drank this herb or ate that herb and started the day off by drinking a cup of their own urine and they never had diseases.... and during all of this, people nod their heads and agree.

I then say, "Well, why don't you take those herbs..." and he responds, "they destroyed all the herbs, there are no more, they did it so they could produce and manufacture medicine..."

anyways, it is sad but I fear the human condition is predisposed in believing in pseudo science. I guess it is because we want it to be true, I mean, who doesn't want to live to a 100 and be in perfect health, have all your teeth, etc all by eating some plant that is easily obtainable...

 

[ThatRobGuy]

This reminds me a lot of the anti-vaxxer stuff. Pseudo science is a billion dollar industry. I'm not so sure why it is so appealing to the masses. I work with a guy who believes in all sorts of crazy logical fallacies as concerns medical treatments and technology... What is really surprising is when he goes on one of his rants that people listening will nod their heads at a few of his crazy points. One of which is his sentiment that natural herbs can cure everything but "they" don't want you to have the cures, so they manufacture ineffective medicines...

Then he rants about how the ancient "this" or "that" civilization that lived in some remote village or mountain top had people that lived to 100 years old healthy as an ox and they drank this herb or ate that herb and started the day off by drinking a cup of their own urine and they never had diseases.... and during all of this, people nod their heads and agree.

I then say, "Well, why don't you take those herbs..." and he responds, "they destroyed all the herbs, there are no more, they did it so they could produce and manufacture medicine..."

anyways, it is sad but I fear the human condition is predisposed in believing in pseudo science. I guess it is because we want it to be true, I mean, who doesn't want to live to a 100 and be in perfect health, have all your teeth, etc all by eating some plant that is easily obtainable...

I know a few people who are like that...I suspect there are a few in this thread perhaps....who feel the need to take the non-mainstream "government is out to get you" position on everything. They judge how good a source is by how much it contradicts mainstream sources (the more the better in their minds). Obviously we see it a lot when it comes to the world of conspiracy theories, but I think their mindset on that bleeds over into the topic of health & medicine as well.

Much like when they're discussing conspiracy theories, they have two sets of evidence requirements for the two different things. For the official mainstream position, they use massive scrutiny and often run it through the "six degrees of separation" logic to try to disprove it, or prove that it was rigged. However, when it comes to the counterculture position, they'll believe it at the drop of the hat with very little supporting evidence.

When discussing mainstream medicine:
"Well, the guy who was running the research team once played tennis with the cousin of the mailman who used to deliver mail to a Pfizer sales rep on his route...so that means that study was rigged and Pfizer's just out there to get everyone hooked on their drugs"

However, when discussing the "alternative medicine":
"HenrysHolisticHealth. blogspot. com" said that Ginger Root can cure sinus infections...well, that's all the validation needed, sounds legit, case closed. (with a conveniently placed link to take you to the herbal supplement store no less).


Now, I won't deny that the US is one of the most over-prescribing nations on the planet (if not the most), and that's definitely a problem. However, like I've told people before, one entity dealing with some ethical issues doesn't, by default, validate their opposition. The sad thing is a lot of these holistic/homeopathic folks don't realize that the largely unregulated supplement industry in the US is playing the exact same game as the Pharma industry. Only difference being, the product that the Pharma industry provides has actually been proven to work.

To those of us looking in from the outside, it's borderline comical because it comes across as:
"I'm not going to let some greedy corporation tell ME to put a bunch stuff in my body, that's why I take these $150/month worth of herbal supplements I bought from a Chiropractor's office!...I won't be made a fool of!"

However, it goes from being ironic & comical, to sad, dangerous, and borderline criminal when things like this happen:
A toddler got meningitis. His anti-vac parents gave him an herbal remedy. The toddler died. Now his parents are on trial.

...and when people start selling quack treatments to people for price tags like six-figures, they're nothing more than a con artist.


And, as I'm sure you noticed in this thread, the "gotta immediately take the counterculture, anti-mainstream position" crowd immediately jumped on board with it and started referring to this procedure in question as if it were a definitive cure and started labeling the mainstream medical opinion as an evil death panel.

 

[dgiharris]

....However, when discussing the "alternative medicine":
"HenrysHolisticHealth. blogspot. com" said that Ginger Root can cure sinus infections...well, that's all the validation needed, sounds legit, case closed. (with a conveniently placed link to take you to the herbal supplement store no less).

Ironically, this segment on HBO is some of the best journalism regarding supplements

If I were king for a day, I would make viewing the above link compulsory. It exposes the Supplements Industry for exactly what it is.

One fact from the link. Supplemental Products do NOT have to have accurate labeling of their ingredients. They can list Ginseng root as the main magical ingredient and stamp it on the front in giant letters and then when you do an analysis of the ingredients the Ginseng root can literally be trace amounts like 1 PPM (one part per million). Something like 60% of supplement products do this, they tout and market a magical ingredient as the main ingredient when in reality, there are only barely detectable trace amounts.

Not to mention the other giant fact that Supplemental Products do NOT have to have any clinical trials or peer reviewed studies or any scientific data backing up its claims!

In the 90s they tried to pass simple legislation that said, "any product making and medical claim must have clinical trials and peer reviewed studies to back up said claim..."

Seems reasonable right? Well, the supplement industry lobbied and fought back and launched a $100 million dollar marketing campaign to get an exemption. That's right. Thus, in 1995, the Supplemental Industry won and can make any ridiculous anecdotal claim they want as long as they put in tiny microscopic print *not evaluated by the FDA or clinical trials*

It is modern day snake oil salesmanship and my guess is that it kills more people per year than firearms or drunk driving.

Now, I won't deny that the US is one of the most over-prescribing nations on the planet (if not the most), and that's definitely a problem. However, like I've told people before, one entity dealing with some ethical issues doesn't, by default, validate their opposition. The sad thing is a lot of these holistic/homeopathic folks don't realize that the largely unregulated supplement industry in the US is playing the exact same game as the Pharma industry. Only difference being, the product that the Pharma industry provides has actually been proven to work..

Life is a game. There is a bell curve of IQ. By definition, 50% of the bell curve is of average IQ or less.
I have come to realize that those of average IQ or less are incapable of rational logical deduction and/or are easily led astray by logical fallacy arguments and/or emotional arguments.

The irony is that everyone feels they are above average intelligence, everyone feels that they know the truth of things.

The Supplements Industry is an entire industry geared towards exploiting the above. Their marketing and ads are anecdotal, pseudo science, and targets people wary of mainstream science... It is deplorable.

And, as I'm sure you noticed in this thread, the "gotta immediately take the counterculture, anti-mainstream position" crowd immediately jumped on board with it and started referring to this procedure in question as if it were a definitive cure and started labeling the mainstream medical opinion as an evil death panel.

When I was a pre-teen learning in school, I was amazed at textbooks and how humankind was accumulating knowledge and then passing that knowledge on to the next generation and we would likewise grow up, accumulate more knowledge, put it in textbooks and pass it on to the next generation and so on and so forth.

I remember thinking that we are just a few generations away from utopia because surely once everyone has seen the knowledge, once everyone knows about all the past mistakes etc that we would not repeat them...

ahhh... the follies of youth...

It never occurred to me that there would be huge swaths of the population that delight in ignorance and being "counterculture".

I think the reason is that being counterculture is just easier. You can make claims without any proof. You can take positions rooted in logical fallacies. It is very appealing to the ego to be counter culture, it's a weird sorta validation of your superior intellect, to be able to see "the truth" that the others cannot see. Then there is your ability to make insane claims that are impossible to disprove. For instance, you make the claim that there was a flower whose petals cured cancer but the drug industry destroyed all those flowers so they could manufacture ineffective drugs that only treat the symptoms. That is an argument that is impossible for me to disprove, despite it being nonsensical. Yet, since I can't disprove it, that must mean it is true right?