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.
Couple pay >$800k for a gene-editing therapy for their daughter. She died.
101–110 of 248 posts
Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.
#102Many 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…
Fear mongering bullshit.
Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.
#103Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.
#104Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.
#105Many 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."
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.
#106Earlier 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.
Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.
#107Many 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…
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.
#108Earlier 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…
Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.
#109Earlier 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.
_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.
#110Many 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.