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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.

#81

Post by fwip »

CuriouslyC wrote: post #54
ToucanLoucan wrote: post #23

Earlier quoted context omitted.

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.

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.

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

#82

Post by alightsoul »

api wrote: post #78
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…

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."

This is what happens when healthcare is for profit.

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

#83

Post by fwip »

trhway wrote: post #57

"Seven days after the girl’s medical team infused trillions of viruses carrying the recipe for the base editor into her spinal fluid, she died of a severe immune reaction linked to the therapy" questions of a layman - couldn't they initially do a small infusion of the [may be even weakened version of that] viruses to check for the immune reaction? May be such infusion would really serve as a vaccine prepping the immu…

The article mentions that she was given an immunosuppressant (prednisone), but that a more comprehensive course of immunouppressants could have been given.

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

#85

Post by sokoloff »

XorNot wrote: post #75
sokoloff wrote: post #55

Earlier quoted context omitted.

Parents put their children at lethal risk (albeit small) for non-lethal conditions all the time. Wisdom teeth removal under general anesthesia is around 1 in 100,000. It doesn’t sound so crazy if the risks were presented as “only 10x as risky as wisdom teeth extraction”.

I don't know where you're getting that number from. For all dental anesthesia the risk rate seems to be literally 1 in a million [1] and the various law firms which popped up during that search suggested better then 1 in 300,000 at least. Which also omits the base level mortality of dental complications wisdom teeth are likely to cause. [1] https://pmc.ncbi.nlm.nih.gov/articles/PMC5535496/

Table 1 in your link does not support 1 in a million for general anesthesia procedures, unless I’m badly misreading it.

Nor does the discussion section nor overall summary figure, which is 3 in a million for all forms of anesthesia (local, sedation, and general), where you have to at least exclude local anesthesia (the most common type) as having a fundamentally lower risk of death than sedation or GA.

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

#86

Post by Loughla »

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.

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

#87

Post by GaryBluto »

raincole wrote: post #28
nubg wrote: post #17

> The young girl tugged on her mother’s hand as they pressed through the doors of the hospital in Shanghai. She was 6 years old, bouncing along in a pink jacket and blue pants decorated with cartoon bears. Behind them, her father rolled a large suitcase with everything the child needed for the weeklong stay: stuffed animals, Play-Doh, an iPad loaded with episodes of Peppa Pig. What's this style of "journalism" (time-…

Treat those proses as warnings. They mean the writers have decided to guide your emotions in certain direction instead of portraying what happened in a neutral tone.

Indeed. Whilst not the same situation, one of the things I realized while developing a filtering system for various websites was to be thankful for obnoxious mannerisms and phrases. You want people to keep using filtered phrases and such because said users are usually not worth the time anyway, even if they stopped using them.

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

#88

Post by 395trek »

lconnell962 wrote: post #31

An article about the complicated issue that is a child with a non-lethal developmental disorder getting a treatment that ends with the tragedy of the headline. The article might be sensationalizing the situation, but it makes the doctor out like a monster and as the facts read I can't say I disagree. That the treatment was inconclusive in the animal studies isn't particularly shocking. The brain is one of the more co…

kinda sounds like in vivo test driven dev

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

#89

Post by ButlerianJihad »

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…

> monster

> monster

> monster

Perhaps if his genes were properly modified, then he could become nearly human in the court of public opinion.

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

#90

Post by Mezzie »

ryandrake wrote: post #43
orangedog wrote: post #38

Earlier quoted context omitted.

That's not what happened here. The team was too ambitious and not careful enough but they were not trying to kill the child. I just don't think there is any reason to put that additional context into what happened here.

I think what OP was trying to ask was why would a parent be willing to put their child at lethal risk, using an experimental treatment, for a condition that itself is not lethal? I don't have a kid with autism or a learning disability so I don't know how I'd handle it, but if I did, I'd probably choose to live with it and help the child make the best of it. I would not be reaching for someone's research project.

In this case, you're probably right, but there are definitely spaces between 'live with it' and 'lethal'.

I have multiple sclerosis and at the time of my diagnosis the best treatment available to me in terms of slowing the progression of MS had a risk of triggering a rare brain infection that would kill you. So it was a choice between treatments that didn't work as well but had lower risk and treatments with greater odds of being able to walk/work/not be in horrifying constant pain in 10 years but also a small chance of death.

These decisions can end up being horribly complicated, and they are definitely revealing in terms of your values.

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