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.
"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.
Couple pay >$800k for a gene-editing therapy for their daughter. She died.
161–170 of 248 posts
Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.
#162Earlier 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…
No it's not like any other field. There's no such thing as a 10x doctor. A '10x' doctor is just as likely to kill you as any other especially when it comes to experimental never before done procedure. In fact a 10x doctor like Qiu is more likely to take risks. This is medicine not a software shop where we measure productivity by number of commits or number of surgeries per hour except by 10x you mean 10times more lik…
Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.
#163Earlier 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."
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…
Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.
#164Earlier 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?
The people who need it most are often the least profitable to treat and the least able to pay for it. That's because being sick negatively impacts your earning potential. The sicker you are the less you can afford a way to pay for treatment to not be sick. It's analogous to the problem with debtors' prison.
Obscure or low-survival-rate conditions are almost by definition unprofitable to treat. Rare condition? Stage four cancer? It's most profitable to let you suffer or die. There's not enough of a market for the former and the latter has a low probability of leaving someone behind to pay the bill.
Old age care can't be profitably offered on insurance or credit. Old? Pay cash or die.
Demand is not infinite because (excluding certain neuroses) people generally do not want health care. They only get it when they need it. Demand does not skyrocket with reduced price or free availability, so the system doesn't automatically just drown in demand when you take the cost away.
Competition is sparse because talent is scarce and the cost means there tend to be only one or a few hospitals covering an area. Specialty services and general practitioners are different, but for advanced and expensive care it tends to be not quite a natural monopoly but almost one. It's like how there's not very many space launch companies. Because it's so f'ing hard the supply of competitors is small.
Lastly, because customers are ignorant (very few people are qualified to evaluate health care tech or treatments), quackery is structurally more profitable than medicine that works. It's hard to have a healthy market when fraud is massively easier and more profitable and the customer finds it hard to tell the difference. Add to that the fact that try before you buy and comparison shopping are almost impossible, especially for serious medical care. You can't exactly toss out or return a surgery.
Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.
#165Earlier quoted context omitted.
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 emergen…
During my wife's second pregnancy, we got a lot more information and did more preparation than for the first. Someone shared the BRAIN acronym for making decisions. Can't remember it exactly, but it was like ask / think about benefits, risks, alternatives, intuition, doing Nothing (for now). I think the Nothing one was the most important, what happens if I don't take action and defer the decision. Medical professiona…
Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.
#166Two 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 physiotherapis…
Physios really are great
Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.
#167Earlier quoted context omitted.
No it's not like any other field. There's no such thing as a 10x doctor. A '10x' doctor is just as likely to kill you as any other especially when it comes to experimental never before done procedure. In fact a 10x doctor like Qiu is more likely to take risks. This is medicine not a software shop where we measure productivity by number of commits or number of surgeries per hour except by 10x you mean 10times more lik…
The point is, there are excellent doctors, good doctors, bad doctors, and awful doctors who should probably have their licensure revoked; just like engineers, or any other profession, there is a spectrum to the quality of service/talent/care.
Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.
#168I'm honestly quite shocked that the physicians/scientists involved would choose to use an AAV for a brain-targeted gene therapy. There is just so much data demonstrating that these vectors are quite immunoreactive: most of the approved gene therapies based on AAVs carry black box labels for liver failure caused by an immune reaction to the viral capsid. Admittedly, AAVs are the most derisked vector for gene therapies…
Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.
#169Earlier 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…
If he had succeeded, though, he would have been a hero, both to the parents and the world. And the same racing that we are condemning as monstrous would have saved other children as well. Obviously I'm not saying he is a hero or that what he did is right, just pointing out that the ethical tradeoffs in medical research like this get very complicated very fast. Ultimately it boils down to the trolley problem: is sacri…
Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.
#170Earlier quoted context omitted.
And were those risks adequately communicated to the people taking them? According to the story, they weren't. That's a Big Fucking Deal, and is absolutely a significant part of the story. Was that in the headline?
This is pretty silly. If you're paying $860k for something (note this is USD being spent within China), you can afford to do basic research on what you're getting involved with, which they apparently did: > 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. The risk was explicitly s…