Live data from Hacker News

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

science.org

101–110 of 248 posts

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

#101
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."

This is what happens when healthcare is for profit.

[deleted]

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

#102

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.

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

#103
Cases like this are heartbreaking, but they're also a reminder that failures like this ones need to be published just as prominently as success. Gene editing is still a young field, and if negative outcomes remain hidden, other researchers can't properly assess risks or make improvements

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

#105
post #78

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."

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 buy it without insurance...

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

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

#106
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."

This is what happens when healthcare is for profit.

It is more complicated than that. Markets have the structure and regulations we give them. Health care gets set up and delivered with very different concepts and guidance in various places regardless of whether it is for profit.

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

#107

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. For instance, my oncologist had zero problem rattling off mortality statistics. I've personally had doctors try to sell me surgery before identifying the issue, but I've also had doctors successfully talk me out of what would have been useful procedures by offering their risk/benefit assessment unprompted.

It's like any other field. If there are 10x and 0.1x engineers, you bet there are 10x and 0.1x doctors. A 1hr intake appointment isn't anywhere near enough time to judge even for folks in the field.

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

#108
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…

> Didn't inform the family that the treatment could possibly kill their daughter From the article: > The parents had heard about serious side effects, including deaths , caused by other gene therapies, and knew the greatest risk would be Mei’s immune response to the massive dose of virus. Qiu said getting the dose right was critical, but infusing the viruses directly into Mei’s spinal fluid, rather than the blood, wo…

Right, part of his whole pitch was that he had a new cutting edge gene therapy that was more precise than CRISPR. I think the parents were definitely obsessed with "fixing their daughter", but it seems like Qiu didn't try at all to "snap them out of it" by mentioning how the treatment he was attempting could also kill her.

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

#109
post #97
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.

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

Parent had a good question and this is restating what’s already been said.

_how_ do you advocate? If I could avoid delegating to experts, I wouldn’t be in the situation in the first place.

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

#110
post #86

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.

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 emergency situations this all changes though.
Post reply on HN