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Couple pay >$800k for a gene-editing therapy for their daughter. She died.

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Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#141

Post by solenoid0937 »

mft_ wrote: post #115
ndiddy wrote: post #56

Earlier quoted context omitted.

He's pretty clearly a monster or at least monster adjacent. He and his team * Took hundreds of thousands of dollars under the table to develop the treatment * Neglected to take steps that would determine whether the treatment was safe to use on humans * Didn't inform the family that the treatment could possibly kill their daughter * After the treatment did kill their daughter, he published the study anyway except str…

> * Took hundreds of thousands of dollars under the table to develop the treatment I'm in two minds about this. On the one hand, at face value the funding and payments seem dubious - especially with the mention of one of the doctors returning his payments, suggesting they were for his personal enrichment, rather than payment for the costs of the treatment development and trial. On the other hand, the parents were lit…

Yeah, I was also surprised by how inexpensive this was.

Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#143

Post by HedonicEscal8r »

esikich wrote: post #102
senderista wrote: post #76

Many years ago I was attending pre-surgery for a hip replacement surgery for my sister, who had known severe reactions to anesthesia (actually required a tracheotomy for a previous reaction). The anesthesiologist asked to speak to us privately and informed us that in their opinion, my sister had maybe a 1/3 chance of not surviving the surgery. They also mentioned that this was a breach of protocol and they could get…

I don't believe this for a second. The anesthesiologist is obligated to tell them this, they meet and discuss this kind of thing with the family/patient. It isn't a breach of protocol, the doctor and surgeon would also have been informed and would have relayed as well. Fear mongering bullshit.

I agree, sounds suspicious and likely misremembered.

Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#144

Post by CuriouslyC »

fwip wrote: post #81
CuriouslyC wrote: post #54

Earlier quoted context omitted.

You should try being the parent of a seriously autistic child. I'd put a large chunk of cash down that most parents of severely autistic children wish their child had never been born. There's no upside, it basically ruins your life. Every interaction is a reminder of what you will never have, and what you will have to suffer through for the rest of your life.

If you really feel this way, get some therapy. The only one ruining your life is you.

If you think I'm the one ruining my life, having to change diapers and do most everything for someone who can't talk, has limited motor skills so he has to be pushed around half the time rather than walk anywhere, who needs constant attention, and will probably need constant attention for the rest of his life, your "wokeness" has lead you to be incredibly cruel.

Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#145

Post by nkrisc »

Loughla wrote: post #86
senderista wrote: post #76

Many years ago I was attending pre-surgery for a hip replacement surgery for my sister, who had known severe reactions to anesthesia (actually required a tracheotomy for a previous reaction). The anesthesiologist asked to speak to us privately and informed us that in their opinion, my sister had maybe a 1/3 chance of not surviving the surgery. They also mentioned that this was a breach of protocol and they could get…

The problem is, how do you know when to advocate for yourself? I have zero idea if what the doctor is telling me is accurate or not. I'm not a doctor. This is why people are moving away from main stream medicine, in my opinion.

How is it any different for non-mainstream medicine? How do you know if what your homeopath is telling you is accurate?

Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#146

Post by RobotToaster »

Loughla wrote: post #86
senderista wrote: post #76

Many years ago I was attending pre-surgery for a hip replacement surgery for my sister, who had known severe reactions to anesthesia (actually required a tracheotomy for a previous reaction). The anesthesiologist asked to speak to us privately and informed us that in their opinion, my sister had maybe a 1/3 chance of not surviving the surgery. They also mentioned that this was a breach of protocol and they could get…

The problem is, how do you know when to advocate for yourself? I have zero idea if what the doctor is telling me is accurate or not. I'm not a doctor. This is why people are moving away from main stream medicine, in my opinion.

"do your own research" may get mocked, but it's often the best strategy. You just have to make sure it's the right place, professional guidelines, pubmed, and anyone referencing those is usually best. A good doctor won't have issues discussing something from that kind of source.

Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#147

Post by thruway515 »

itishappy wrote: post #107
senderista wrote: post #76

Many years ago I was attending pre-surgery for a hip replacement surgery for my sister, who had known severe reactions to anesthesia (actually required a tracheotomy for a previous reaction). The anesthesiologist asked to speak to us privately and informed us that in their opinion, my sister had maybe a 1/3 chance of not surviving the surgery. They also mentioned that this was a breach of protocol and they could get…

> The lesson for me is that you must advocate for yourself and your loved ones in the medical system, because doctors will not do it for you; they may not even perform the most basic risk assessments. And you have to try to quantify risk yourself, because doctors will refuse to give you the slightest hint of any number attached to risk (I know, I've tried many times). Doctors vary wildly, and that's part of the issue…

No it's not like any other field. There's no such thing as a 10x doctor. A '10x' doctor is just as likely to kill you as any other especially when it comes to experimental never before done procedure. In fact a 10x doctor like Qiu is more likely to take risks. This is medicine not a software shop where we measure productivity by number of commits or number of surgeries per hour except by 10x you mean 10times more likely to be careful and ethical

Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#148

Post by [deleted] »

ToucanLoucan wrote: post #23
wnevets wrote: post #18

> When Mei was 4, one of her kindergarten teachers pulled Linda aside: Mei didn’t draw or write as well as the other kids and her language skills weren’t developing normally. Her mother might want to get her evaluated, the teacher said. In March 2023, Mei was diagnosed with global developmental delay, a broad label with many causes. Specialists explained that some of Mei’s behaviors—the funny sounds she liked to make…

It says so much about how our society treats the neurodivergent that it's considered a non-extreme opinion that a dead child is preferable to an autistic one.

[deleted]

Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#149

Post by nickff »

thruway515 wrote: post #147
itishappy wrote: post #107

Earlier quoted context omitted.

> The lesson for me is that you must advocate for yourself and your loved ones in the medical system, because doctors will not do it for you; they may not even perform the most basic risk assessments. And you have to try to quantify risk yourself, because doctors will refuse to give you the slightest hint of any number attached to risk (I know, I've tried many times). Doctors vary wildly, and that's part of the issue…

No it's not like any other field. There's no such thing as a 10x doctor. A '10x' doctor is just as likely to kill you as any other especially when it comes to experimental never before done procedure. In fact a 10x doctor like Qiu is more likely to take risks. This is medicine not a software shop where we measure productivity by number of commits or number of surgeries per hour except by 10x you mean 10times more lik…

What exactly do you mean by "10x doctor"?

Some surgeons have a 10x higher 'revision rate' than others, and from what I understand, that may be an understatement. Many of the statistics which would indicate the ones to avoid are not tracked, precisely because the doctors do not want them tracked.

Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#150

Post by modeless »

Eisenstein wrote: post #139
modeless wrote: post #105

Earlier quoted context omitted.

Some people thought it was a good idea to cap [administration cost + profit] of health insurance companies as a percentage of premiums. As a result, health insurance administrators have two ways to increase their compensation: they can compete to acquire more customers, or they can artificially inflate costs per customer. Guess which one is easier! Now you don't have to wonder why medication is half the cost when you…

> Love to hear all the time how the "free market" is ruining healthcare. Of course everyone knows a "free market" is when you have profit caps, supply restrictions (residency cap), government-run marketplaces, byzantine tax subsidies tying insurance to employment for no reason, etc etc What people are talking about with regard to health insurance being ruined by being market based is that the profit motive should not…

Removing the "evil" profit motive has always been an argument for socialism. If it would work for healthcare, why not everything?
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