I shared my toddler's hospital bill on Twitter. First came supporters — then death threats.

[El_Machinae]

The American policy of funding research, and using private enterprise to bring successes to market is actually terrifically useful and powerful. There's a reason why I am always asking people to donate to research charities. That base goes a long, long way.

 

[Samson]

The American policy of funding research, and using private enterprise to bring successes to market is actually terrifically useful and powerful. There's a reason why I am always asking people to donate to research charities. That base goes a long, long way.

I do not believe that it is powerful, compared to doing all the research publically. The main reasons are:

• The efficiency of money spent on drugs to money spent on research is so low. 1.8% of what the world spends on medicines is fed back into research. This is so low that just about any other arrangement has to be better.
• Closed research is so much worse than open research. If all research is published in open journals as soon as possible for all interested parties to read then science can flourish much better than if it is kept within an organisation for as long as possible.
• There is an incentive for drug companies to research palliative treatments for diseases of the rich rather than curative treatments for the things that kill most people. This is wrong incentive structure to get the best results for humanity.
• There is an incentive for drug companies to only selectively publish trial results that show the best thing for drug sales, not necessarily the best for the population
• The patent structure means that "building on the shoulders of giants" is discouraged outside of the company that owns the patent. For example, there was little incentive for others to look at combination drug therapy including AZT for others than the patent holders.

 

[El_Machinae]

There are absolutely many things wrong with the current system. This is a field I work in, and I can tell you all about wonky incentives. But one of the problems certainly isn't the public funding part, unless if you want to get into details about fine-tuning. And governments fund with a different vibe compared to the research charities.

The patent system creates slightly wonky incentives, but the public funding prevents a lot of waste on this front. The more that's done at the public level, then less can be 'captured' by the patent. It's our licensing system that really runs into troubles. It's hellishly hard to compare drug A to B, or either to generics. Now, obviously their two manufacturers have no incentive on this front. But the public absolutely has incentive. And it's honestly very tough to get permission to run those experiments.

 

[civvver]

eh I'm not really going to bark up that tree of medical research and drug costs. I don't think it's the real culprit in the health care crisis.

The real culprit is use, misuse, administrative waste and waste in general. There's no transparency for costs, you always hit your deductibles so most people just use whatever amounts of healthcare they want without looking at costs, without shopping competition. There is no competition really. You just find a dr you like, prices be damned. You wouldn't do this in like any other field. You don't buy a car or tv or food even without considering costs. It's not the primary factor sometimes but it's always a factor. In health care it's not cus 1. no one can tell you up front the cost cus of insurance contracts, and 2. cus you don't really pay the real costs. If you have a $50,000 surgery or a million dollar one, your cost is fixed. In a way this is good, it's the point of insurance, but many plans have fixed copays. I was talking to some neighbors who pay $75 to go the ER period. Doesn't matter what they do there, it's always $75. That's really good insurance btw, very unusual and the premiums must be high. But regardless, at that rate why wouldn't you go to the ER for everything if it was convenient? For me I go to urgent care for stuff like fevers and flus cus it's around $120 vs who knows what the ER charges, maybe $500-1000 or which I'll pay deductible + 20%.

Then there's a question of how much resources are being used to figure out these stupid contracted rates and copays and all that junk. Insurance companies have costs. It would be less administration and cheaper if everyone just paid cash and we didn't have to pay part of our premiums for staff to basically be secretaries. Hospitals have entire departments for these billing issues.

Then, and this is probably the biggest, is end of life care and procedures that may not be in the best interest of the patient like open heart surgeries and life saving procedures on people in their 80s and 90s. Drs want to do those procedures cus they bill big bucks. But patients may not always want them and get persuaded into them by the drs and their family. We spend a huge majority of our money on care for people at the end of their life. Republicans always say oh that's death panels if you want to deny granny treatment, but really we should be looking at quality of life not just extending it just cus we can. And we need to listen to what granny actually wants.

 

[Farm Boy]

So: Republicans call it death panels if you want to deny treatment, but we should really be denying treatment. But that's ok, because what grandma really wants is to die. Like infants with brain damage. Or fetuses with abnormalities. What they all truly want is death.

Not that there isn't a problem, but what kills most of our people? Where should the spending be? Assuming we get better at things the more we do them.

 

[civvver]

It's obviously not that simple. But I'm saying why do we spend millions of dollars on a single cancer patient to extend their life by less than 12 months when most of those 12 months are misery? There are many interested parties in treating those patients of course. Yes research is part of it.

Have you heard of Charlie Gard? That's one extreme example, this family just absolutely refuses to let the kid go. It's harder when they are kids for sure. I don't know what's right in that case. But you are seeing it now, britian with universal health care is refusing to pay for experimental treatment that has like a 10% chance to make a kid less of a vegetable. It's not a 10% chance to cure him, it's a 10% chance of some minuscule improvement. People are going nuts over this. I'm not advocating either way, just showing it as an example of what I'm talking about, spending a lot for very little results.

 

[metalhead]

I doubt a fetus has much in the way of "wants."

It's reasonable to put an expectation of results on expenditures of public dollars. In health care terms, "results" involve some permutation of extending one's life and improving one's quality of life. We're not saying that doctors are never allowed to perform risky, expensive procedures with little or no expectation of positive results. Just that it shouldn't be up to the public to fund such procedures. There comes a time when you're spending other people's money where it becomes reasonable to take their wants into account.

The social contract with the elderly was never intended to extend to, "We will keep you alive at all costs!"

 

[Farm Boy]

Charlie Gard is dead civv*.

And yes metal, it's entirely reasonable and necessary that when you're spending other people's money in a system they own by definition and all that, that yes, they are going to inform you of what they want and enforce it. Which is why it's actually pretty damned sticky when you're in their system no matter what, they remove the alternatives, and can come after you with "well if you don't like what we're giving you, you can always move to Somalia you ingrate!" w/e. It's almost like it's actually a slide into people not owning their own health, wait, that almost is uneccessary. That's what it is. Our technology upgrades your health experience, you are free to forgo a health experience. Should you choose to participate in said experience, some terms and conditions apply... Same old same old. New day, new tool, new depth of reach.

* Not being willing to pay for a low-odds procedure isn't actually why people were angry, man. Charlie's parents raised a bunch of money online for the costs and were blocked from attempting transport as being not in the best interests of the minor patient(which was determined to be death) while the whole thing bounced around legal land. His parents were also not allowed to have him die at home, and perhaps in the least surprising bit of news in the whole story, were the parties that actually finally bent because they were the ones most genuinely concerned with the interest of their son. Amazing how sometimes in order to care you have to lose when you're dealing with earthly might.

 

[metalhead]

"People won't own their own health!" is extraordinarily dumb. Sorry, I hear that all the time and it just doesn't make a lick of sense.

 

[Farm Boy]

Comprehension issues abound.

 

[metalhead]

Positing good health as something which has no intrinsic reward is indeed impossible for me to comprehend. 15 years of coffin nails really drives home its value.

Keep in mind my socialist paradise affords all people the "luxury" of ample time with which to manage their health, should they wish.

 

[Farm Boy]

Good lord.

 

[metalhead]

Yes?

 

[Samson]

Have you heard of Charlie Gard? That's one extreme example, this family just absolutely refuses to let the kid go. It's harder when they are kids for sure. I don't know what's right in that case. But you are seeing it now, britian with universal health care is refusing to pay for experimental treatment that has like a 10% chance to make a kid less of a vegetable. It's not a 10% chance to cure him, it's a 10% chance of some minuscule improvement. People are going nuts over this. I'm not advocating either way, just showing it as an example of what I'm talking about, spending a lot for very little results.

That really was not the situation, and I am not sure it is relevant here. The parents had collected over a million quid by crowd funding to send him to america, but the doctors said there was no chance of it doing good and the the suffering caused by the travel and treatment was cruel. Then after a load of legal wrangling another doctor came up with some sort of evidence showing that there could have been something like a 10% chance of improvement, so they were considering it again, but then examination of the child showed that he had deteriorated to that point that there was no chance of improvement.

A terribly sad story, and it does raise questions of consent in the case of a child unable to express their own wishes, but not much to do with how much to spend on elderly care.

 

[El_Machinae]

"People won't own their own health!" is extraordinarily dumb. Sorry, I hear that all the time and it just doesn't make a lick of sense.

You interpreted it kinda the opposite of what he said. He's talking about people losing options due to paternalistic laws, and them resenting that loss.

 

[metalhead]

Ah. Perhaps he could have explained that to me.

A frequent nonsense point made by people on the right is that if you give people health insurance, they won't take care of their health because there is nothing in it for them since any medical bills they incur will be paid by someone else. As if bills are what drive people's decisions about their health.

 

[Berzerker]

bills dont drive medical decisions?

 

[Bootstoots]

This is probably a good time to note that some "online pharmacies" actually are legit, and that reddit has extensive reviews to figure it out. Unless you try to import scheduled substances (a small fraction of overall drugs), you will not suffer any real legal risk (about a 1% chance of customs confiscation and subsequent slightly threatening note with no legal action, the other 99% get through just fine, stamped as "stationery" or something). Importing Third World pharmaceuticals is not especially risky in a physical sense either - especially not Indian generics, which are saving large numbers of lives worldwide by undercutting First World prices. Most Latin American drugs are pretty good too - keep in mind that most of the region now has life expectancies well above 70 despite markedly higher levels of poverty.(Last I checked, Chile beats the US, Costa Rica is tied, Cuba very near tied, and Mexico within about 2 years).

Also, there are drugs that have never made it onto the FDA/DEA radar because they come from somewhere generally ignored - the Soviet Union cranked out a bunch of things, a few of which work and follow very different modes of action than what Western pharmaceuticals did, and practically none are illegal in any way - many are sold from US sources as supplements. Finally, some supplements (e.g. L-methylfolate, something that helps a significant proportion of treatment-resistant depressives who have a knockout mutation taking out the main enzyme responsible for methylating folic acid [I'm one: I know this thanks to 23andme]) actually do work to some extent. The same supplement is known as Deplin and can be bought through the "legitimate medical system" for hundreds of dollars/month, or through Amazon.com for about 1/10 that.

Not that I'm really advocating all this - I'd rather have a functioning First World medical system. But as the US healthcare system continues to become ever more dysfunctional with pinball-score pricing, it's becoming even more necessary to find ways around it. Medical tourism and importation of drugs from countries where you can just buy them for a reasonable price are options that often cost less, especially for the poorly-covered or non-covered with serious but non-emergency problems.

 

[Valka D'Ur]

For me I go to urgent care for stuff like fevers and flus cus it's around $120 vs who knows what the ER charges

Here, people are told not to go to the emergency rooms for the flu, unless they're really having trouble breathing. In my case, although I do have respiratory issues, I've never had the flu bad enough to require hospitalization. It's been absolutely miserable - it hits me harder and longer than most people - but I manage at home. Thankfully I haven't had many since an annual flu shot became a routine thing over a decade ago (they don't always guess right as to which strain to vaccinate against, or I get sick before the shot takes effect).

It's the same situation with colds, as well. So it's a case of keeping stuff around to get through it - warm blankets, chicken soup, fruit juice (who wants to drink water all the time when you're trying to stay hydrated?), lots of kleenex, and I use the time from the first warning symptoms to when it really hits to make sure the cats have what they need and that I've notified anyone who visits here regularly that I'm sick and they should stay away.

When cold/flu season starts, I pretty much go into hermit mode. I don't go out unless it's absolutely necessary, don't touch public door handles or elevator buttons with bare hands unless necessary, etc. There are a lot of kids in this building and they bring every damn thing home that's going around the schools. Since I didn't get most of the childhood diseases out of the way as a kid, it's sensible in my case to be paranoid about these things.

Then, and this is probably the biggest, is end of life care and procedures that may not be in the best interest of the patient like open heart surgeries and life saving procedures on people in their 80s and 90s. Drs want to do those procedures cus they bill big bucks. But patients may not always want them and get persuaded into them by the drs and their family. We spend a huge majority of our money on care for people at the end of their life. Republicans always say oh that's death panels if you want to deny granny treatment, but really we should be looking at quality of life not just extending it just cus we can. And we need to listen to what granny actually wants.

Is doctor-assisted dying legal in the U.S.?

So: Republicans call it death panels if you want to deny treatment, but we should really be denying treatment. But that's ok, because what grandma really wants is to die. Like infants with brain damage. Or fetuses with abnormalities. What they all truly want is death.

Fetuses with abnormalities are not capable of expressing a choice. They don't even know, in most cases, that they exist. For infants with brain damage, it depends on the damage, whether or not the kid has any chance of a life as a self-aware person who isn't in constant pain, and can communicate with other people.

I am my dad's legal guardian. I make his medical decisions. If I am informed that he's had a heart attack or stroke, it's my decision as to what the doctors do or don't do about it - whether to do extraordinary measures to keep him alive. I had a frank discussion about this with his doctor, who described what it would be like. My dad is 82 and a lot more fragile than he used to be, so it was decided that a DNR would be the appropriate - and compassionate - way to go.

This decision will come fairly soon, I think, probably within the next 2-3 years. His father died at age 85, and his mother died at age 86. My dad is afflicted with a combination of what killed them - COPD and dementia (actually my grandmother had Alzheimers).

I can't legally request assisted dying for my father, and because he has dementia, he's not legally allowed to request it for himself, no matter if he really wants it (one thing he expressed to me over 10 years ago, after my grandmother died, was that if he ever was in her situation, "just take me out and shoot me"). Well, of course I wouldn't do that... but it's galling that on the one hand, society would condemn me for forcing one of my cats to suffer with a terminal illness and unremitting pain/loss of quality of life, yet would condemn me for wanting to spare my father that same unremitting pain/loss of quality of life.

 

[Zelig]

For me I go to urgent care for stuff like fevers and flus

I avoid urgent care because it's full of people who are liable to make me sicker than if I'd just stayed home.