Charlie Gard

[Xiahou]

Dr. Hirano is chief of the division of Neuromuscular disorders and a professor of neurology at Columbia University in New York City, not a traveling snake oil salesman. Maybe he had other motives in offering treatment- I don't know, but it seems rather unseemly for GOSH to publicly slam him like this. Aren't they supposed to be above that?

I think the claim that the treatment "hasn't even been tested on rats" is a misleading claim as well. It's be used with some success on another child already. The "hasn't even been tested on rats" claim only holds when you add the exact same variant of mitochondrial depletion to the mix. However, as I've said, the treatment has been used on someone with a very similar variant.

I just find it odd and perhaps a bit defensive that GOSH is lashing out like this.

[Montmorency]

Dr. Hirano is chief of the division of Neuromuscular disorders and a professor of neurology at Columbia University in New York City, not a traveling snake oil salesman. Maybe he had other motives in offering treatment- I don't know, but it seems rather unseemly for GOSH to publicly slam him like this. Aren't they supposed to be above that?

I think the claim that the treatment "hasn't even been tested on rats" is a misleading claim as well. It's be used with some success on another child already. The "hasn't even been tested on rats" claim only holds when you add the exact same variant of mitochondrial depletion to the mix. However, as I've said, the treatment has been used on someone with a very similar variant.

I just find it odd and perhaps a bit defensive that GOSH is lashing out like this.

Expressing "disappointment" in the man for interloping at such a late stage isn't really lashing out.

From the hospital's statement and the parents' statement, it seems that Dr. Hirano was offered the opportunity to evaluate the case in the end of 2016/beginning of 2017. He did not take up the offer, and the hospital would not agree to the patient being sent abroad without justification. Forward to April 2017, Dr. Hirano reviewed some of the conclusions from the hospital on Gard's case (but not the court ruling or raw data) and concluded that the treatment would not be worthwhile.

It is pretty weird that Dr. Hirano only comes forward once it's an international story, in July. Why couldn't he come to the UK during the winter?

[Sir Moody]

People with a new idea/treatment/procedure/tool can be a bit monomaniacal about seeing to it's success. This doctor likely wants the accolades associated with coming up with a new, significant therapy. I suppose he would enjoy the money as well, but remember that most of that money will go to costs, etc. for the expensive equipment and meds.

However, unless a few test cases volunteer to use the therapy, the doctor will have no support to continue its development and achieve his/her dreams.

Medical boards in the states would insist on the Doc detailing the procedures, risks, and potential calamities as well as the possible benefits. With informed consent, the doctor could begin. Medical boards would NOT punish the doctor unless something was misrepresented as something it was not -- were our medical review boards to suspend doctors for being egotistical or lacking in bedside manner/class, we would have a LOT of suspended specialists and a medical crisis on our hands.

so they wouldn't have a problem with a Doctor offering a medical treatment without even checking the patients notes, let alone examining him?

[Beskar]

so they wouldn't have a problem with a Doctor offering a medical treatment without even checking the patients notes, let alone examining him?

Nope. After all, it is "I am offering this treatment. I can start after I reviewed his condition and assessed him." Then never bothered to come and assess him in the UK, wanting it to be done in the USA. Hospital saw no reason to transport a child on life support to the USA given his condition to a doctor who hasn't even bothered to check the notes.

Then in court, he said the money involved is a motivating factor for him which further supports the snake oil claims, especially in the country where the health system is seen as being "above" profiteering at the expense of sick people.

For non-Americans, you got to remember in the USA that the number 1 concern is the money, not the care being provided.

[Philippus Flavius Homovallumus]

Nope. After all, it is "I am offering this treatment. I can start after I reviewed his condition and assessed him." Then never bothered to come and assess him in the UK, wanting it to be done in the USA. Hospital saw no reason to transport a child on life support to the USA given his condition to a doctor who hasn't even bothered to check the notes.

Then in court, he said the money involved is a motivating factor for him which further supports the snake oil claims, especially in the country where the health system is seen as being "above" profiteering at the expense of sick people.

For non-Americans, you got to remember in the USA that the number 1 concern is the money, not the care being provided.

That last part is a totally unacceptable slur against the American medical profession in general and I think you should retract it.

Edit: It's also terrible grammar.

Having money as a motivation does not make it the sole or even primary motivation.

Charlie Gard first became sick in in September, he is transferred to Great Ormond Street in October, by January his parents are trying to raise money to get him to the States and by March his doctors want to terminate his life support.

Given Doctor Hirnao's eminent position there is no good explanation for why he did not travel to the UK earlier but I suspect there is some academic-political issue we are not aware of yet.

In any case, the appellation "Snake Oil Salesman" is totally inappropriate for a Head of Department at one of the World's best universities.

[Montmorency]

In any case, the appellation "Snake Oil Salesman" is totally inappropriate for a Head of Department at one of the World's best universities.

I agree. In the worse case, he didn't enthusiastically take the case in January because between the parties there was not enough money to go around. Maybe he became more vocal in past weeks because he had more support from administration or funding groups above him, and he wanted to proceed as rapidly as possible.

I don't think there is anything to show that he was predatory with respect to the similar cases of serious disorder he treated successfully in the past, not to mention other academic and professional accomplishments.

[Beskar]

That last part is a totally unacceptable slur against the American medical profession in general and I think you should retract it.

True, there are many hard working doctors, nurses and practitioners within the United States. It is unfair to tar them all with the same brush. There are unfortunately those who do fit that stur but they shouldn't represent the profession as a whole. It is typically more the private finance parties and more managerial roles within the insitutions with a focus on share-holders rather than the front-line staff.

Unfortunately, my comment was rather jaded after a run-in with a Trump-supporting Anti-Obamacare Doctor who was pretty much suggesting if poor people got jobs, then they could afford to pay for treatment, at his high prices because he has worked for it, instead of being lazy and should suffer because of this. He also went on to attack the NHS as a failed socialist experiment pandering to everyone who enters the doors of the service. I don't think he entered the profession for the right reasons, he only cares about rich customers.. or more specifically, their money.

Having money as a motivation does not make it the sole or even primary motivation.

It can reflect heavily in organisational cultures. If the number one concern was customer satisfaction, you get a lot more customer friendly practice and service from that company. They will still be making a profit because they cannot run otherwise, but the underlying philosophy represents they get that value from the service provided which means more repeat customers and word-of-mouth reputation. A profit driven business would maximise profits at the expense of other factors, so you would get poorer customer service. An example of these two practices in reality might look like this in lets say... used car salesmen. The customer facing salesman operates his buisness which provides great care for the customer, gives them full information about the purchase, offers a low-set price, and the person will walk away happy. This may operate by selling a lot of cars for a little.. which still produces a lot. A more profit driven might show cars at more eye-watering high prices, and will chose not to disclose details or get people to sign up to plans which might not be benefical to them. They will operate a bargaining model where getting lower prices is akin to getting blood from a stone. This works by trying to sell the product for a lot. Employee pay wise, the customer facing may adopt a 'pay per car' scheme, so their incentive is to make the customer happier and they get paid by amount of cars sold. The profit driven model might work on a commission basis, so employees are incentivised to sell the cars for as much as possible. Here in the nutshell is a very brief summary about corporate culture and how different operating models operate in different ways.

As expected, these different cultures exist within the private American healthcare system. There are different operations, from charity/third-sector sponsered hospitals which operate closer to the NHS, to more care-focused providers who have a steady stream and money is not necessarily a concern, to those who don't care about the individuals other than the money they bring in.

[Fragony]

Don't mind me thinking that you don't give a hoot about that kid and use it to attack a certain system, you make a medical question a political one. A lot is wrong of course nobody who denies that

[Sir Moody]

In any case, the appellation "Snake Oil Salesman" is totally inappropriate for a Head of Department at one of the World's best universities.

I withdraw that then - I still think he was ethically bankrupt to draw this out as long as he did without examining the patient.

[Fragony]

I withdraw that then - I still think he was ethically bankrupt to draw this out as long as he did without examining the patient.

Maybe he alreafy felt the airflow of the vultures hovering over him

[Seamus Fermanagh]

so they wouldn't have a problem with a Doctor offering a medical treatment without even checking the patients notes, let alone examining him?

That's part of the process too. Doctors cannot inform patients of the risks likely to them without knowing basics about their health, current condition, and previous treatments. It was an assumed part of my comment.

[Beskar]

He has now passed away and to a better place.
http://www.bbc.co.uk/news/uk-england-london-40752120

[Fragony]

Better that he passed away, I hope it was gentle

[Seamus Fermanagh]

Eternal rest grant unto them, O Lord, and let perpetual light shine upon them. May the souls of the faithful departed, through the mercy of God, rest in peace. Amen.

[Philippus Flavius Homovallumus]

I withdraw that then - I still think he was ethically bankrupt to draw this out as long as he did without examining the patient.

Perhaps, if things actually were as described by Great Ormond Street.

Depends what he was told, though, he might have been told that he could come look - but not treat the child.

He's a world class academic and doctor - yet his actions make no apparent logical sense from an ethical, monetary or research point of view.

I see two possible explanations.

1. He's morally bankrupt as you say.

2. There's information not currently in the public domain.

One thing to note is that American Doctors are very litigation averse and American academics often more so, as are their universities.

As Fragony says - Beskar appears to be using this to attack American healthcare in general, he would have tarred all American medics with the same brush apparently without compunction if I had not pointed out how unfair that was.

This is the only recent case I can recall where Doctors went to court to *prevent* their patient being treated - usually it's the other way around.

[Pannonian]

Perhaps, if things actually were as described by Great Ormond Street.

Depends what he was told, though, he might have been told that he could come look - but not treat the child.

He's a world class academic and doctor - yet his actions make no apparent logical sense from an ethical, monetary or research point of view.

I see two possible explanations.

1. He's morally bankrupt as you say.

2. There's information not currently in the public domain.

One thing to note is that American Doctors are very litigation averse and American academics often more so, as are their universities.

As Fragony says - Beskar appears to be using this to attack American healthcare in general, he would have tarred all American medics with the same brush apparently without compunction if I had not pointed out how unfair that was.

This is the only recent case I can recall where Doctors went to court to *prevent* their patient being treated - usually it's the other way around.

Charlie Gard: The Facts

[Fragony]

I didn't imply that Beskar did that nor do he think he did so. This is all worth looking at from various perspectives, all will probably have a point and every one should be considerated. Whe learn from eachother by not agreeing. Beskar just threw the ball

[Beskar]

Charlie Gard: The Facts

Great article on the subject and raised a lot of the points I already made previously.

There is one point in there I wasn't aware of. Great Ormond Street Hospital sought Ethical approval to do the experimental treatment themselves (though outcome was that it was too late for Charlie at that time), going beyond what I even thought they would do.

[Fragony]

Everybody should just shut up, don't pretend you give a hoot. I can empathise now but next week, I have forgotten it, tommorow already probably and already now really. Probably earlier. Or not even cared at all. The latter probably. At least I know that of myself

[Philippus Flavius Homovallumus]

Charlie Gard: The Facts

Yes, those are the facts, but are they the "Established Facts" or are there some "Alternative Facts" here?

There is something extremely odd about the involvement of Hirano - is just doesn't stack up any way you look at it.

[Pannonian]

Yes, those are the facts, but are they the "Established Facts" or are there some "Alternative Facts" here?

There is something extremely odd about the involvement of Hirano - is just doesn't stack up any way you look at it.

The GOSH account accords with the other medical professionals in the UK and the judge's decision. Unless you're drawing a conclusion based on what's not there rather than available evidence. And going by the involvement of a spin doctor on the Gards' side (yes there was, and I've read her account of how she managed the story), I wouldn't place any trust in second hand explanations of Hirano's (non)involvement.

[Beskar]

Here is another article for your collection on the subject, Pannonian.
http://www.melaniephillips.com/cruel-ignorant-campaign/

It was the original source to yours. Which was very confusing when I identified very similar phrases, but it is explained in your link that they read the other article.

"In other words, there never was any hope for Charlie – and the claim that fresh research evidence provided some new hope was wholly without foundation and came from someone who had never even examined the child."