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Matt's
climber
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she has DIPG-- a rare glioma subtype with 5-year survival of <1%, median survival is 9 months. So, effectively a death sentence as of 2017.
As a cancer biologist, the genetics of the cancer is pretty interesting-- most of the patients have a specific point mutation in histone H3, leading to epigenetic disregulation. In a preclinical setting, there has been some promising work with histone demethylase inhibitors.
Raising money to send this kid to Mexico for a "treatment" is essentially a transfer of funds from well-meaning people to charlatan doctors.
If you want to help this child-- there are various research efforts that are worth supporting-- for example, Michelle Monje at Stanford is a DIPG expert, I'm sure she could use more money; St Jude's and WashU St Louis have been active in understanding the genetics of the disease, money given to them is definitely not wasted.
best,
matt
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Jon Beck
Trad climber
Oceanside
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thanks Matt, good to hear a voice of reason, and without a wall of text!
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Reilly
Mountain climber
The Other Monrovia- CA
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An old friend was on the med-ethics board of a major childrens' hospital in a major US city with a Swedish colleague who routinely called out his colleagues on their god syndromes and liked to remind them that 20 children with treatable cases could be likely saved for the cost of treating one of these type of cases with almost a zero chance of success.
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Yury
Mountain climber
T.O.
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Topic Author's Reply - Jul 1, 2017 - 08:33pm PT
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Matt's:
she has DIPG-- a rare glioma subtype with 5-year survival of <1%, median survival is 9 months. So, effectively a death sentence as of 2017.
As a cancer biologist, the genetics of the cancer is pretty interesting-- most of the patients have a specific point mutation in histone H3, leading to epigenetic disregulation. In a preclinical setting, there has been some promising work with histone demethylase inhibitors Matt's, have you read a description of this treatment?
You just need to scroll down to English vershion.
It seemed legitimate to me. However I have almost zero knowledge of cancer genetics.
A few of my friends know this guy.
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Matt's
climber
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Matt's, have you read a description of this treatment?
You just need to scroll down to English vershion.
It seemed legitimate to me. However I have almost zero knowledge of cancer genetics.
A few of my friends know this guy.
(not an MD, but have a PhD in cancer biology; this is not medical advice, caveat emptor, etc...)
It sounds like they are giving her chemo right now (unclear which chemo agents), and for some reason they are layering on a dendritic-cell based immunotherapy treatment-- essentially, they take dendritic cells out of her body, grow them ex vivo, and stimulate them, usually with tumor-specific antigens, before infusing them back in her body. The general idea is that these cells will help the immune system recognize the tumor as foreign and attack it.
There is no evidence that this efficacious. I'm not really even sure how well immunotherapy works in the context of a brain tumor-- the immune environment of the brain is weird/different/not well understood.
In addition- I would be terrified of having a cell-based therapy performed in Mexico-- do they have the facilities to grow the dendritic cells aseptically? what quality assurances are they doing? What antigens are they pulsing the DCs with? There are a lot more things that can go wrong than can go right.
best,
matt
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nah000
climber
now/here
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In this case government bureaucrats decided that they should not pay to treat aggressive cancer of his daughter.
i can't even...
is there nothing worth protecting anymore? we're seriously disingenuously politicizing a kid fighting cancer now too?
yury, if you actually cared, you'd cut out the political lies and stick to what can actually be established: a desperate family is seeking desperate treatments with little to no proven track record of success, that in all likelihood no establishment doctor would prescribe...
this is unfortunately a new nadir for politicization around here.
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mtnyoung
Trad climber
Twain Harte, California
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...I'm gunna die and I'm good with that. :)
It's true Tad. But please don't hurry :)
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zBrown
Ice climber
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I've been told that all cancer begins with a mutation in a single cell. Shouldn't y'll be out looking for that cell?
-Apoptoosis the Great
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WBraun
climber
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The natural human condition is life .........
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fear
Ice climber
hartford, ct
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A close relative works in a hospital and one day I asked her why are there locks on the morgue vaults?
She replied, "To keep the oncologists from pumping them full of chemo"..
Prayers for the Swedish guy and his girl if it's legit. A horrible place to be for anyone.
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madbolter1
Big Wall climber
Denver, CO
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I didn't decide, you must have misread the appeal. Who is a society to decide?
The point IS that a socialist society DOES decide. So, your question presses on the social-contract issue. When a socialist society says, "We're going to forcibly extract massive taxes from you to redistribute all around, but the trade-off is that when you need care, you're gonna GET it," and then in the most poignant of cases you are NOT gonna get it, we quickly see that society IS going to think in bang-for-buck terms, which makes it a NO more "moral" system than insurance-agencies or the lack thereof.
We can debate 'till the cows come home about how "efficacious" this or that treatment might be. But the parent (and apparently the OP) believe that there is reason to hope in the desired treatment.
Who would you have decide? Your favorite neighborhood Death Panel?
Well, actually, that's precisely what does make the decision, and the more-so the most socialized the system is. Remember, it's bang-for-buck.
Someone who is knowledgeable, professional, dispassionate, open to any arguments? Who?
How about the parents? Novel thought... you know, the person desiring something, anything with some chance of saving their daughter.
You see, it's precisely these sorts of cases that press on the bang-for-buck foundation of the socialistic contract. Would these parents have "signed up" in the knowledge of how this was going to play out? Oh, wait, like all socialistic "contracts," there IS no "signing up." There is only force.
Are you going to force a physician who has NO experience in doing something, to do something highly risky? Are you going to force a hospital, who has no experience in doing something, to do something?
Of course not. I'M not the advocate of force in this debate; socialists are! I would advocate that Sweden PAY to have the desired treatment done, wherever the parents could get it done. It's not like they are seeking a witch doctor.
And that raises another point about the forced socialist "contract." When everybody "signed up," were they told, "Hey, when you need treatment, we will NOT pay for anything arbitrarily deemed 'experimental.' You'll get treatment IF we deem that you're not too old, infirm, or 'terminal' to get it, and that treatment will be FIRMLY inside a narrow band of 'acceptable' treatment options."
See, if my insurance company won't pay, I can SUE them. How does a citizen sue a nation-state? NOT an easy deal, if it can be done at all. So, NO real accountability when the socialist state decides for you whether you live or die.
I can't speak for Sweden, but in the US, such an issue would probably be reviewed by an ethics committee, made up of people who are not involved in the care, including physician ethicists, nurses, non-healthcare professionals (lay public), clergy. They make recommendations to the Administrator of the Hospital and the treating team, as to the ethics of the situation.
And how is this not the very "death panel" to which you earlier referred? What process of appeal is there, when the sentence is: Death?
Who would you have decide? Answer the question!
I have answered the question. The PARENTS, who were forced into a lame socialist "contract" should decide. And the lame socialist state should pay up until the child is cured or dead.
Has there ever been a brain transplant in the history of the world? No. And yet, they have a SHRED of hope, even though irrational.
What a lame example. We have reasons completely independent of this discussion and this child's condition to believe that a brain transplant will NEVER be possible. That's nothing like these parents seeking "experimental" treatments that in some cases have proved beneficial (even if only for the short term) and could add to the body of knowledge regarding cancer in general. THIS case is one in which the parents are seeking treatment that is simply outside a fairly narrow range of defined "efficacious" treatment, which insurance companies and socialist states treat as "not enough bang for the buck." So, a "death panel" DOES decide that the PAID FOR treatment will not be forthcoming.
Socialism, like Fascism, is a forced collective in which the lowest common denominator is sought and attained. It is not "charitable," as it literally converts genuine charity into forced extraction. And its distribution decisions are always (and necessarily) arbitrary and usually incorrect.
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Yury
Mountain climber
T.O.
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Topic Author's Reply - Jul 2, 2017 - 06:46am PT
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madbolter1:
The point IS that a socialist society DOES decide. So, your question presses on the social-contract issue. madbolter1, you need to abandon socialist terminology and right propaganda BS if you want to get your message understood.
Please stop talking about society as a whole and start talking about government bureaucrats and apparatchiks of the rulling party. These people make all decisions.
Who would you have decide? Your favorite neighborhood Death Panel? Why not to use more realistic names like "Review Board"?
Anyway, often there is no need to make such life and death decision.
A person can be placed on a waiting list and wait, and wait, and wait ... (like in Canada).
Socialism, like Fascism, is a forced collective in which the lowest common denominator is sought and attained. madbolter1, you were brainwashed by socialist propaganda.
In real socialist society some animals are more equal than the other.
Specifically, high ranked government bureaucrats and party apparatchiks enjoy higher standard of life including a higher standard of health care.
Real socialism delivers equality to most members of a society except the rulling class.
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madbolter1
Big Wall climber
Denver, CO
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madbolter1, you need to abandon socialist terminology and right propaganda BS if you want to get your message understood.
Oh, my message is understood just fine. But the left-wingers here in the USA have no idea what a POS society the USA will turn into if sweeping socialist policies (like single-payer health care) become law here.
Please stop talking about society as a whole and start talking about government bureaucrats and apparatchiks of the rulling party. These people make all decisions.
And they make these decisions as RULERS exactly because the society has deemed it so. The socialists in the USA genuinely believe that money grows on trees, because it can be so easily extracted from the middle class. They won't get it from the rich and powerful, because, well, they are the rich and powerful. That's why Obamacare turned out to tax about 100,000,000 MIDDLE CLASS people, while the rich and power didn't feel it.
Single-payer will be the same thing: a MASSIVE tax on the middle class, which the rich won't feel. And then everybody except the rich and powerful will have lowest-common-denominator health-care. The rich will always be able to afford the best health-care. And our RULERS always exempt themselves from the nightmares they cause, just like they did with Obamacare (Congress has its own health-care plan).
So, as always, the MIDDLE class, working people, will get totally screwed in order to make it "better" (what a joke) for the relatively few "poor" people. And another GIANT, totally-invasive, government bureaucracy will be born. Like Social Security, it will be badly managed, have ever-changing rules, require more and more care and feeding (always at taxpayer expense), and ensure that everybody who is not rich and powerful will have lower-quality health-care than they did in the "bad old days" prior to Obamacare.
Anyway, often there is no need to make such life and death decision.
A person can be placed on a waiting list and wait, and wait, and wait ... (like in Canada).
Riggghhhhhtttt.... That's what we all have to look forward to.
madbolter1, you were brainwashed by socialist propaganda.
You have me confused with my socialist opponents. I want NOTHING to do with their idea of a socialist utopia.
In real socialist society some animals are more equal than the other. Specifically, high ranked government bureaucrats and party apparatchiks enjoy higher standard of life including a higher standard of health care.
Of course. That's how it is in the USA under Obamacare. Our RULERS always have it better than the middle class. What the socialists among us want, though, is to BURY the middle class, to ensure that everybody is "equal" in being poor and in having the BOOT of government pressed down on our necks with equal force. They want government infesting every, tiny DETAIL of our lives, all-knowing, all-deciding, and all-powerful.
Real socialism delivers equality to most members of a society except the rulling class.
And so, it is NOT equality. It establishes the permanent ruling class empowered to make decisions "for us" regarding the tiniest details of our lives. There will be "death panels," and there will be new, invasive laws about everything: What we eat, when we sleep, when we go to the doctor (or not).
In Japan there is already a national law regarding maximum waist size for men. If your waist size (as measured regularly at your job) is "too large," the company where you work is required to put you on a mandatory exercise program and keep monitoring your waist size until it is "just right."
http://www.nytimes.com/2008/06/13/world/asia/13fat.html
THAT is the sort of insanity that single-payer makes "normal."
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rottingjohnny
Sport climber
Sands Motel , Las Vegas
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Mad...Valid points...The 1%ers own the government more or less thru campaign contributions aka bribes.. Make sure you assign blame where it belongs...
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rbord
Boulder climber
atlanta
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https://www.law.georgetown.edu/news/press-releases/Black-Girls-Viewed-As-Less-Innocent-Than-White-Girls-Georgetown-Law-Research-Finds.cfm
Adults view black girls as less innocent and less in need of protection than white girls. Especially at the tender young age of this girl. Looks like she could use some protection.
In our society where median white wealth is 13 times median black wealth, is that "irrational" or "delusional"?
Words are just words. Like humans are just humans, both in our vanity and in our "altruism."
When we make our choice of where to spend the money, or the emotional equivalent of the money, we make our choices for the reasons that we make our choices. I expect that's a rational process, even if the beliefs that we form in our brains aren't there as a result of the awesome rationality of our belief processes.
I don't think they conducted this experiment on the one percenters. This is about us.
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madbolter1
Big Wall climber
Denver, CO
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The 1%ers own the government more or less thru campaign contributions aka bribes.. Make sure you assign blame where it belongs...
Right. So, where is the only "wiggle room" from which to extract yet more? The middle class. The "poor" don't have it, and the 1% are NOT going to give it up without a fight like we haven't seen before.
So, all these spanking, new "rights" that socialists dream up can only get paid for by the middle class.
Locker, I don't hold a CANDLE to you or Craig Fry. And, unlike you guys, I'm one of the very few here that has not drunk the liberal Kool-Aid. So, when I get some time (and I'm not entirely frustrated), I'll offer an "opposing" perspective (that is not a "right wing" one, btw).
If, for example, a server update process is running and just needs to be monitored, I might take a few minutes to bang out one of my trademarked WoTs.
Don't be jealous! You're keeping the posting-frequency standard much higher than I could ever hope to achieve!
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WBraun
climber
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Locker you knucklehead.
Richard can type 50 words by the time it takes you to type one simple sentence of 10 to 12 words.
His WOT's take probably less time than for you to turn your brain on .....
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madbolter1
Big Wall climber
Denver, CO
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So I give up...
ROFL
Well played.
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Gnome Ofthe Diabase
climber
Out Of Bed
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Umm what been going on? I will look after I stash this here ,
I'm sure you all will carry on
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