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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.

#191

Post by khazhoux »

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.

What a terrible view of parents! I don't know a single one who wouldn't give their life for their child, whatever their flaws.

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

#192

Post by ricardobayes »

khazhoux wrote: post #190
gamblor956 wrote: post #187

Earlier quoted context omitted.

They actually don't call them doctor, because the lowest grade in medical school is an F and plenty of wannabe doctors flunk out every year.

What do they call the guy who got the lowest possible passing grade in medical school?

Anecdotal, but the passing grade is much higher in medical school than other programmes, like 70-75%. But interestingly, it's often pass/fail instead of grades.

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

#193

Post by Eisenstein »

modeless wrote: post #150
Eisenstein wrote: post #139

Earlier quoted context omitted.

> 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?

Are we socialist because we don't charge people for investigating crimes they report?

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

#194

Post by qsera »

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…

>you bet there are 10x and 0.1x doctors

But sadly, with doctors, someone who provides 10x value to the patient might not be the same ones that provide 10x value to the Hospitals that employ them. Which means real 10x doctors might be less and less visible.

At least in software, you don't need a certificate or association with an institution to practice the trade. So you can be self employeed while free to deliver 10x value to your customers..

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

#195

Post by qsera »

jimbooonooo wrote: post #161
RobotToaster wrote: post #146

Earlier quoted context omitted.

"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.

respectfully, a majority of the "do your own research" crowd are not reading any PubMed or professional guidelines.

When a measure becomes a target, it ceases to be a good measure. If an article/research quality is assessed by if it appear on pubmed, then appearing on pubmed becomes target for all research. And thus appearing on pubmed stops from being a good indicator.

You can ask for specific ways this can happen. But that would be point less. Human behavior and incentives work in ways that are beyond specifics.

Everyone here probably knows this already, but forgets it when it comes to medical domain.

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

#196

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.

#198

Post by a_e_k »

gamblor956 wrote: post #187
brianwawok wrote: post #179

Earlier quoted context omitted.

What do they call the guy that got the lowest grade in medical school? Doctor

They actually don't call them doctor, because the lowest grade in medical school is an F and plenty of wannabe doctors flunk out every year.

"What do you call the person who graduated bottom of their class in medical school?"

(At least that's how I've heard it phrased before.)

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

#199

Post by spwa4 »

qsera wrote: post #194
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…

>you bet there are 10x and 0.1x doctors But sadly, with doctors, someone who provides 10x value to the patient might not be the same ones that provide 10x value to the Hospitals that employ them. Which means real 10x doctors might be less and less visible. At least in software, you don't need a certificate or association with an institution to practice the trade. So you can be self employeed while free to deliver 10x…

Also keep in mind that you get hip replacement surgery because of constant, quite intense, pain.

The doctors obviously also talked to the patient and he or she obviously felt that just reducing the pain was worth the risk (because a replacement hip will still be long-term painful, so it's an improvement, not a solution. This will have been discussed extensively with the patient) ...

Or the patient may even have felt that the risk was in fact also a solution to the pain. The patient may have chosen not to talk about this to their relatives.

When you're really young medicine can feel like it solves problems permanently, especially when you're still growing. This is almost never actually the case. Medicine mitigates, makes bad situations livable for longer, restores part of your previous health. If you treat it like a solution once you're ... say 50 ... you will be severely disappointed and that can lead to drastic decisions. Or if you live your life like some people do "medicine will fix it, let's JUMP" you're likely to be disappointed, suddenly.

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

#200

Post by superxpro12 »

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…

This is the EXACT reason why the FDA exists.... this.... shit.... tricking desperate parents into paying millions of desperate dollars when anyone who knows anything about it knows the "experiments" just cause death. Yet another grift.
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