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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.

#121

Post by outworlder »

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.

> This is why people are moving away from main stream medicine, in my opinion.

What other type of medicine is there? Most "non-mainstream" things are pseudoscience nonsense.

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

#122

Post by nkrisc »

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…

You’re absolutely correct, but I think your story about the anesthesiologist shows that there are some doctors who do care.

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

#123

Post by amatecha »

caraffle wrote: post #93
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…

This is fear mongering at best and unbelievable. Why would a surgeon know anything about anesthesia risk? Anesthesia regurarly cancels cases due to safety concerns - there's no "protocol" or "getting in trouble" (what does that even mean), that's standard of care. "Anesthesia" is a doctor too and ultimately holds the call on if they will put a patient under or not.

> Why would a surgeon know anything about anesthesia risk?

Idunno, maybe because their entire career is performing surgeries which include anaesthesia and they have worked for potentially decades alongside anaesthesiologists? For instance, I've worked in the same type of role (programmer) for my entire career and I somehow know a ton about the disciplines adjacent or closely related to mine, especially because I work with them every day.

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

#124

Post by decimalenough »

ndiddy wrote: post #56
throwway120385 wrote: post #36

Earlier quoted context omitted.

I didn't read it as making the doctor a monster. What I saw in the story is an example of how the road to hell is paved with good intentions.

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…

If he had succeeded, though, he would have been a hero, both to the parents and the world. And the same racing that we are condemning as monstrous would have saved other children as well.

Obviously I'm not saying he is a hero or that what he did is right, just pointing out that the ethical tradeoffs in medical research like this get very complicated very fast. Ultimately it boils down to the trolley problem: is sacrificing a few worth saving many others?

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

#125

Post by Avicebron »

modeless wrote: post #105
api wrote: post #78

Earlier quoted context omitted.

US healthcare is very strange in that on one hand it pinches pennies and is incentivized to not fund treatment, but on the other hand there seems to be some kind of internal incentivize to spend liberally and do everything. The whole system is a mess of perverse incentives. I've often described it as "everything bad about socialized medicine combined with everything bad about privatized medicine."

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…

If anyone is curious, this the USA, it came from the ACA in 2010 championed by Democrats. It's almost like it doesn't matter which jersey is being worn.

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

#126

Post by al_borland »

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 think this is how they avoid liability. They lay out some options and leave it up to the patients, with no medial training, to decide how they want to move forward.

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

#127

Post by mft_ »

cowlby wrote: post #12
fabian2k wrote: post #2

There's so many ethical problems with the events as described in the article. The worst to me seems to be that the researchers/doctors seem to have downplayed the risks here. Which for a never before tried gene therapy that is meant to work inside the brain are absolutely enormous. The ethical issues around the money seem minor in comparison with that and the fact that they seem to have ignored similar side effects i…

Reminds me of the TGN1412 drug trial where patients had severe immune reaction and almost died. Sad that the story suggests they ignored all the signs that would suggest humans would have a bad immune reaction to it and proceeded anyway. https://www.reddit.com/r/Documentaries/comments/jrraz7/when_...

With TGN1412, it wasn't that the right work wasn't done, or that results ignored, but rather that the regulations in place at the time weren't right to deal with that sort of drug. Following what happened, the regulations were changed around the world to be more cautious and suitable.

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

#128

Post by outworlder »

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.

> 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.

They did not set out to kill the child. And the autism wasn't even the biggest issue. The issue is the developmental delays that were expected to compound the more the brain was left untreated.

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

#129

Post by jcul »

snaking0776 wrote: post #110
Loughla wrote: post #86

Earlier quoted context omitted.

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.

Having dealt with the medical system recently, if there isn’t immediate harm involved with waiting, always advocate for yourself and consider a second opinion. The doctors will think you’re annoying and that you trust the internet too much but it’s their job to make you understand why elective procedures are necessary. Don’t let someone trying to rush to their next patient hurt your health outcome. I think in emergen…

During my wife's second pregnancy, we got a lot more information and did more preparation than for the first.

Someone shared the BRAIN acronym for making decisions.

Can't remember it exactly, but it was like ask / think about benefits, risks, alternatives, intuition, doing Nothing (for now).

I think the Nothing one was the most important, what happens if I don't take action and defer the decision. Medical professionals often make you feel like a decision is urgent when sometimes it is not.

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

#130

Post by vintagedave »

oceansky wrote: post #5

I can't possibly imagine what the parents are going through

I found the description of how they moved apartment, but kept the old one with her room, very saddening. I get it - an aversion or a shrine, hard to say, or both I suspect (in grief I have had both feelings at the same time), but I get it.
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