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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.

#91

Post by numeri »

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.

This is a terribly unempathetic response to someone opening up about a very taboo (but probably very common), painful emotion they've experienced.

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

#92

Post by Shitty-kitty »

It is important to note that in China, developmental delays are treated with ridicule for the affected and as a source of shame for the families.

I'm not passing judgment on the parents, I'm just pointing out that how society treats developmental delays is extremely important to the quality of life of these people.

Here in the US autism was considered a "mental illness" until the 1980's.

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

#93

Post by caraffle »

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.

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

#94

Post by HedonicEscal8r »

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…

Malignant hyperthermia?

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

#95

Post by 395trek »

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…

that's why in clinical trials you first do phase 1 human subjects where they are healthy and take small sub-therapeutic doses to test safety/tolerability. once it's established safe in humans they do phase 2 where they test if it works on sick people. Yeah I know this is different with transduction but they could at least test the vector first, maybe they did? Maybe some kind of lentivirus vector

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

#96

Post by diskzero »

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…

That is terrible and I am glad someone broke ranks to inform you of the risk.

My wife had a very agressive triple-hit lymphoma and CAR-T was eventually suggested. Fortunately, the medical team was very honest about how hard it impacts your body, with very likely chance of death. My wife decided to do it, and it almost killed her. The team actually had to "shut down" the process, so she didn't benefit completely from the treatment. The suffering was pretty immense as well. She died a few months later regardless.

We are (were) both engineers and we did wonder how many might get streamrolled by the whole medical process, where you do get this odd combination of extreme indifference and optimistic exuberance.

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

#97

Post by ipaddr »

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.

Always advocate and avoid delegation to experts who have little stake in the outcome.

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

#98

Post by amoorthy »

Two years ago, my then 81-yr old father, who had Progressive Supranuclear Palsy, was recommended to get back surgery to relieve chronic and debilitating pain. The neurosurgeon said it's routine surgery and he's done it on people much older. We ultimately decided against it and found that a simple wedge pillow to sleep on relieved his pain. A bloody $50 pillow. And this came from a recommendation from a physiotherapist.

What's particularly galling is the recovery from back surgery would've taken at least 6-9 months of rehab and my father's PSP was already sapping his motor skills and yet the surgeon was pushing ahead.

Even with my mom I've had to intervene on several occasions against the doctor's utterly idiotic ideas. Thank goodness for AI to at least make us conversant to ask the right questions of these doctors.

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

#99

Post by arjie »

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-…

It's human-interest style writing. Western, particularly North American, audiences strongly prefer this kind of scene-setting prose prior to information exchange. I am also not particularly a fan of it. In the past, you had to endure it. Nowadays, you can select for your own degree of expertise and terseness by feeding the prose into an LLM and prompting it appropriately. Therefore, complaints of this sort of writer-audience mismatch are no longer of use. Use the tools available to you to solve your problems.

I used Opus 4.8 to avoid Fable guardrail hair-trigger, but you can use ChatGPT as well.

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

#100

Post by Georgelemental »

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.

"Anesthesia" could also be a nurse anesthesist, nurses generally aren't supposed to contradict doctors in front of patients
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