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Simone Giertz – Back from brain surgery [video] (youtube.com)
548 points by lentil_soup 10 months ago | hide | past | web | favorite | 144 comments

We live in a world of marvels.

Often we talk of the future and it's wonders waiting to be discovered, but the here and now has become equally astonishing.

The breadth, depth and scale of human ingenuity and endeavour is jaw-dropping and here Simone and her story is another example.

Maybe I'm being trite by looking for the good in the bad but pause for a moment and think of all that has been learned, how we have built a society and developed infrastructure such that at this particular confluence of time and space we as a species are capable of performing this life saving surgery.

And half a world away I follow the story through yet more confluences of knowledge and development.

It is astonishing. i know it's tempting to take it for granted but take a step back and think about it for a moment. It's astonishing.

I'm 32. I can only imagine how much more marvels I'll witness in my life, either remotely or in person.

The whole system is awe-inspiring. Have a medical emergency? We'll send a several-ton box on wheels speeding your way within minutes. If you're in a city, the traffic lights will turn red as the emergency vehicle approaches to make passing safer. Paramedics trained in evidence-based pre-hospital medicine will perform the interventions most likely to save you based on their field impression.

And when you arrive at the hospital it gets really cool - at a level 1 trauma center, they should be prepared to give you a CT scan and treat you in 10 minutes or less. That might involve snaking a tiny wire through your arteries all the way from your leg to your head, or administering one of thousands of drugs that has exactly the desired effect.

It's easy to take it all for granted but the technology and systems in place to take care of us are amazing.

And if you live in the US and don't have good medical insurance the entire thing might leave you bankrupt and homeless. The ingenuity of humanity is amazing, but we still seem to get in our own ways a lot.

My son had brain surgery when he was 6. He is now 14. The helicopter ride of 100 miles to the brain center was $25,000 and the brain surgery was $46,000. The helicopter ride took 1 hour and used 2 people. The brain surgery was 6 hours and involved at least 3 surgeons, plus unknown number of support staff. Insurance was willing to cover the surgery, but we had to fight for 6 months for the helicopter ride.

To quote the lead surgeon during the 6 month follow up - "I stopped looking at what we billed, and what I got paid years ago. It never made any sense to me, so I focused on the patient outcome, which did make sense to me". Great human, saved my kids life, was totally supportive afterwards and stayed in touch for a few years.

Medical practices in the USA makes no sense to me. I am Canadian.

Relevant to Simone, I have a friend who had the same problem and actually went to the same surgeon for the problem, but 5 years earlier. My son was recovered in a few days, she spent 6 months in the hospital to recover. The change was a new technique. They fixed my son through his leg, my friend had her skull removed and replaced.

Humanity can do awesome things sometimes. Sometimes great, sometimes horrid.

You are still alive though, if it's any consolation.

Now, many countries have this problem solved – for now. As the population ages, the solutions may have to change everywhere.

What I find interesting is that the discussion is almost never framed to address the actual issue: the medical industry in the US simply overcharges with impunity. I was shocked to discover that labor (as in, doctors) isn't even the biggest line item in many (most?) medical bills. Hospitals and clinics will simply crank the bill sky high and then have you or the insurance try to haggle it back down, sometimes at a 3 or 4 digits percentage difference. It's insane. There's also zero transparency on pricing, so it is difficult to shop around even if you have the time.

Your points summarize the thrust of the first in a series of propublica articles.


The biggest expense to doctors is the cost of getting sued all the time and the insurance doctors need to cover that.

Costs associated with medical malpractice account for just 2.4% of healthcare spending in the United States.

Source: https://hsph.harvard.edu/news/press-releases/medical-liabili...

That isn't addressing um_ya's point because doctors are just a part of the overall healthcare industry but bear the brunt of the malpractice costs. This is just one small piece of a broken healthcare system, but how we handle malpractice in this country is certainly broken. Fixing it wouldn't resolve all our problems, but it would definitely help.

I don't think it's broken at all. Tort law, in general, is what we use as an alternative to more aggressive regulation. You remove tort options, the side-effect will just be more regulatory measures.

Imagine a world in which a software developer was held personally liable for any work they did.

First off, this would kill of a huge part of the open source community (the free as in beer software would all disappear). Employee contracts might be structured in such a way that the employee is responsible for any potential liability. Any customer who felt wronged could sue the individual developer who wrote that code.

These lawsuits would then be decided by a jury of people who know nothing about software development. One of the biggest deciding factors in that case would be who could hire the best lawyers and which lawyers could bring in the best "software experts" to explain why the developer did or did not make a mistake. Even if it was ruled that the developer did not make a mistake, they would be unlikely to ever be able to recoup their legal costs. Meanwhile the payouts from the cases in the customer's favor are so large, people are now incentivized to sue over a much wider range of possible mistakes.

These developers just need to accept that these lawsuits and the wasted time and stress that results from them is simply a part of their profession. Regardless of a developers skill, a majority of developers now won't be able to make it through a career without being sued at least once. Eventually the software developers turn to insurance which costs tens of thousands of dollars per year to protect them against these risks.

Would you think this is a fair system? Could you see that system having a negative effect on the software industry? Do you think this would push people out of the industry who might otherwise be great developers? Would this system, that is ostensibly designed to protect customers, actually result in a better level of service?

> Imagine a world in which a software developer was held personally liable for any work they did.

We already live in this world, it’s just that most software had zero impact on the wellbeing of individuals and/or its mostly licensed as-is.

Software with actual guarantees behind it tends to be very expensive. Their users have tort recourse.

Also major software companies get sued and settle on a fairy regular basis.

>most software had zero impact on the wellbeing of individuals

I agree with the "most" designation, but there is still plenty of software that does have a direct impact.

>or its mostly licensed as-is.

Which is exactly my point. Most software comes with an agreement that limits the liability for the company or person who created or sold the software. Developers are able to hand waive away that legal liability in ways that other professions, specifically in the industry, are not able to.

>Software with actual guarantees behind it tends to be very expensive. Their users have tort recourse.

But that is dictated by the contract which sets standard that is above the legal bare minimum. The legal minimum is much higher for doctors.

>Also major software companies get sued and settle on a fairy regular basis.

I will admit my analogy isn't perfect because of the relatively high number of private practice doctors compared with the relatively lower number of smaller ISV developers. Doctors as a whole have a much higher exposure than software developers as a whole. That is why I noted that contracts might change if software malpractice cases really became a thing.

We do live in a world where you can be sued for negligence in software or anything else.

Awe inspiring is correct!

My grandmother was born in 1888. In her lifetime, she saw the first automobile, the first airplane (propeller-driven, followed by jet aircraft!), radio, "talkies" (movies with soundtracks), television (black & white, then colour!), stereo records, indoor plumbing and electrical service, electronic computers, rockets, artificial satellites, the moon landing, refrigeration(!), vaccinations and antibiotics(!), the internet, and on and on.

She lived through two world wars, and the aftermath, losing brothers and friends as a result. There were joys and horrors to be sure. She remembered seeing the first car (which she called "a noisy piece of junk"), and the first time she spotted an airplane, and her first electric appliances (refrigerator and clothes washer).

For a thousand years prior, life had changed but only incrementally -- someone from the year 900 could still recognize life in 1400. However, in this short 100 year span during her lifetime, from 1890 to 1990, the transformation of civilization was so thorough and amazing that it is difficult to appreciate civilization's quantum jump.

What a profound change! Just stop and imagine this for a moment: a world without automobiles, where all travel is by horse/carriage, or train, or boat, or foot. No antibiotics. The milkman delivered (unpasteurized milk to the front porch) and the ice man delivered a block of ice every few days. There was no telephone -- a telegraph was the "text message" of the day and the radio was as close to instant information as one could get. There was no telephone. Photographic news could take weeks/months to travel across a country or an ocean, and the only way to cross the oceans was a boat with cloth sales or a steam boiler and a commitment of months.

So to think of the transition from a time where a little scratch could lead to an infection that kills you, or an injury to a limb means chopping it off and hoping one lives, a scientific (lack of) understanding illuminated only briefly by Phineas Gage's tamper-rod-through-the-frontal-lobe injury to a time where surgeons can cut abnormal things out of your brain and you go home in a couple days functioning normally is just astounding.

We live in a time of miracles. There is no other way to say it.

> someone from the year 900 could still recognize life in 1400.


Pretty much anywhere, I would think.

Before the last century, the majority of humans supported themselves by farming, and farming didn't change that much until the advent of engines.

Possibly parts of Switzerland where they still speak Romansch.

I have weirdly conflicted feelings when I see ambulances go by these days. Because part of me feels this sense of overwhelming pride watching that system work to save someone, people getting out of the way etc.

But then I remember it's only happening because someone's in severe trouble in the first place so it's like "humanity is awesome...oh something not good is happening"

I have this habit I copied off the book "Heart" by Edmondo De Amicis[0] - whenever I hear an ambulance approaching, sirens on, I'll take my hat and earphones off, pausing for a moment as a sign of respect. Respect for the person in trouble, for the people trying to save them, and for the system that allows this to happen.

Thank you 'PuffinBlue and 'goodells for bringing this observation up. The civilization our predecessors built and to which we have privilege of contributing is, for all its failings, truly miraculous.


[0] - https://en.wikipedia.org/wiki/Heart_(novel)

and then there are people who complain about ambulances blocking parking spaces or even roads... https://www.independent.co.uk/news/uk/home-news/man-paramedi...

Northwestern Medicine in the Chicago suburbs has a mobile stroke unit; if there’s evidence you’re having a stroke, they’ll send the stroke unit along with the ambulance and will perform a CT scan in the ambulance to determine what type of stroke you’re having and administer interventions while you’re en route to the ER.


I wonder why ambulances don't have mobile x-ray systems? I realize the radiation would have to be managed, but it seems like a great application of technology to perform the imaging and send it digitally while eh route.

There aren't many cases where having an X-ray done a little faster would be massively helpful. Emergency department physicians and trauma surgeons can read an X-ray for acute trauma in a matter of seconds, and doing the X-ray itself doesn't take more than a few seconds either. It's hard to think of a pathology that would show up on X-ray but not through the patient's presentation or physical exam. Going off memory, I can't think of a situation where an X-ray would be the crossroads that determines what I do next for the patient. Also, an X-ray done in a moving ambulance is probably going to be of fairly low quality. In most cases, they'd just have to redo it in the hospital.

The mobile CT scanner is also not super helpful for much other than determining whether a potential stroke patient has a grossly hemorrhagic stroke. In that one case, it is beneficial, but I don't think mobile CT scanners are used for much else.

To elaborate why a CT scanner is really really important in this case - there are two general kinds of strokes. Ischemic strokes are caused by a blood clot occluding an artery, preventing blood from reaching part of the brain. On the other hand, hemorrhagic strokes are caused by bleeding within the brain. We can use thrombolytic drugs (e.g. TPA) to break up a clot in an ischemic stroke. However, impairing clotting in a hemorrhagic stroke just makes it bleed faster.

The Cleveland Clinic has the same system.


Fantastic to hear. My mother passed due to a subarachnoid hemorrhage (the more difficult type of stroke to treat), so I follow advances in stroke detection and treatment closely.

Emergency services are so underrated. In minutes I can have medical experts, fire rescuers, or even a small army at my door.

And there's parts of the world where this is simply not a thing. We take it for granted.

The thing that blows me away is the idea that nobody knows how to make a pencil. Essentially no one on Earth knows how to make a regular ol' number 2 pencil in it's entirety, from scratch with no materials to a finished product. I saw it in a TED Talk over 9 years, but I don't remember which one. I googled a bit and found a Wikipedia page on a book I'd never heard about called I, Pencil. [1] That's probably source material for the video I watched, which may be the TED talk referenced in the the external link section.

[1] https://en.m.wikipedia.org/wiki/I,_Pencil

That is true. I would like to add, however, that first and foremost we don't know what anything of this actually is, which I find most awe-inspiring.

I once walked into a supermarket and really started to look at what was available, every item, how I could buy fresh oranges in the middle of january, trying to imagine the insane number of persons who had to a involved in all the globe spanning supply lines.

It doesn't compare to brain surgery, but the experience was so profound it came close to breaking my mind (if such a thing is possible), I had to give up and leave, because I just couldn't take it.

Marvels and horrors. As amazing as our current medical science is, if you get a tiny ball of cancer cells in your pancreas, there's a good chance you'll go years without anyone having any idea, and then slowly die while the foremost experts in the world can do absolutely nothing except feed you poison with the hope of hurting the cancer more than the rest of you.

I recently switched from iPhone to Andriod.. I am utterly blown away by the voice to text feature. With 0 mistakes it is able to recognize and transcribe audio. I can write 500 words in a matter of a few minutes. I can just say switch on the flashlight and it comes on. Turn off the bluetooth and it gets turned off.

I can even just say "call (insert name of restaurant)" and it directly calls them up. I am beyond blown away. The future is now.

Dies that work offline or would I inadvertently feed someone's creepy database?

So glad to see Simone back on her feet. The shy robot nation needs its queen!

As for that bill -- I'm curious: is there any resource I can look up to see how much of that the average Medicare/Medicaid/private insurance plan pays?

I ask because I just had two teeth repaired after a bike accident and it'll cost me ~$100 after insurance covers the other ~$500. By that ratio, she'd be looking at ~$38,000 bill.

Because of the way insurance tends to work in America, care providers tend to throw shit at the wall to see what sticks. In other words the first bill is always an outrageous amount of charges that may or may not be valid. Additionally there's something called a negotiated rate that an insurer has with the care provider, usually the care provider's bill does not show this rate but rater some fiction that not even those without insurance pay. If you look at the claims your insurer pays out to the care provider you will see significantly lower amounts than what's billed.

If anyone knows why care providers high ball the rates on bills when insurers have negotiated rates, I'd love to hear it. Is it something in the insurer's contract that gives insured the illusion that insurance is saving them a lot?

In any case I've received first medical bills in the many thousands of dollars only to have them go through four or five revisions before settling down to hundred dollars. This is because the first bill you receive reflects all of the claims to insurance (e.g. if your insurance covers 80% you're on the hook for 20%) but as the insurer and the care provider negotiate and revise the billing the price falls.

In my opinion it's a horrible experience for the insured and the added stress of the huge bills certainly doesn't help with recovery.

> added stress of the huge bills

I really wish people would talk about these sorts of soft costs more often.

I grew up in the UK, moved to the USA in my mid 20s. While growing up, my parents divorced and my mother had to take care of me and a sibling. All 3 of us had medical conditions that needed regular care/checkups.

Not once did my mum ever spend hours on the phone chasing down bills or insurance rejections. We never paid out of pocket for prescriptions, doctor visits, A&E (USA translation: ER) visits, etc.

That stress, or lack of, is a huge factor in quality of life for a family.

Unfortunately this sort of discussion is heavily politically charged. I really don't want to start an argument thread comparing how taxes pay for socialized care, etc.

> I really wish people would talk about these sorts of soft costs more often.

It can get even worse and more subtle than that. I don't even get care in some situations that feel optional because I don't know what the true cost will be. I have money and insurance, but I'm instinctively uncomfortable about electing for services that I won't know the true cost of until weeks later after the care provider and insurance company have done their dance.

There's the deductible which I understand but that's not a blanket thing where everything is free after that. There's always fine print and a cloud of uncertainty about where the limits are for each category.

I'm starting to break this instinct, Blue Cross seems transparent enough when I call them and have a specific question. But that's because I'm getting older and taking health more seriously. I went through a long period when I was younger just ignoring symptoms when I could. Nothing bad happened to me but I've seen friends get diagnosed with cancer that might have been more treatable if found sooner. How many insured people don't get care that they should because they're confused or cynical about the system being set up to extract money from them?

It's not even necessarily just a soft cost. People hear about a friend getting a huge medical bill, they don't go to the doctor as often as they should because they're afraid they'll get stuck with a huge bill, some condition that could have been treated inexpensively if caught early gets missed, the person eventually goes to the hospital when the condition gets too bad to ignore anymore, and huge, expensive efforts have to be made to treat the condition in its advanced stage. And at the end of all this... our person gets handed a huge medical bill.

Healthcare in the US is screwed up beyond belief.

On the flip side people living in socialized healthcare Countries have other stresses.

In the usa my insurance lets me go to 10 doctors for differing opinions. I can go straight to a specialist. When I need non urgent surgery it's scheduled with a few weeks instead of months.

> In the usa my insurance lets me go to 10 doctors for differing opinions. I can go straight to a specialist. When I need non urgent surgery it's scheduled with a few weeks instead of months.

Only if you have good insurance. Insurance companies have been cracking down on this behavior. For example, there are certain specialists which are straight-up not covered unless you have an explicit referral. Likewise, networks of providers will vary. For example, sometimes your area's top hospital won't be "in network", so you're now paying significantly more out-of-pocket for going out of network.

If you currently are enjoying this benefit, please anticipate that privilege to be gone within a decade, regardless of what direction the US healthcare market goes.

Yea, it’s a total minefield. It’s gotten to the point where I won’t go to the doctor unless I literally can’t function. Whenever I go, it’s the same song and dance:

1. Doc recommends a long list of blood tests for reasons she can’t seem to articulate. She’ll also recommend a testing lab. Oh, and see this specialist!

2. Now I have to figure out:

a) which tests do I actually need and which ones are just being recommended out of abundance of caution or because the doc needs to protect herself legally?

b) will my insurance cover the tests I’m going to do? If not (or even if so) how much will they cost me?

c) will my insurance work at this particular lab? The lab often won’t know.

d) do I really need to see this specialist or is my doc just tossing some juicy business to her med school buddy?

e) is the specialist in my insurance’s network?

f) how much is the specialist’s bill likely to be?

g) how much will my insurance pay?

3. Do all the things (or not)

4. Random bills for random amounts start landing in my mailbox over the next few months. They could be anywhere between $100 and $10,000, totally impossible to know ahead of time. I now have to pick up the phone and start negotiating with the doctors and my own insurance company, figuring out what I can pay now, what will have to wait, etc. Usually the insurance company will say something about a deductible and “you have to pay LOL.”

The stress is enough to give me an ulcer (which I’d need to visit yet another specialist for, is this one in-network or out?)

One reason I like the Kaiser HMO system... Everything is under one umbrella. If a doctor approves a test, the system will cover under the plan agreement. I can take 1 test or 50 and it is all covered at a small copay per visit. And specialists are within the system. Last time I needed a specialist, my doctor looked up one in the system and told me there is an open slot in a few hours so he can book me. And once you establish tie with a doctor, you can email them for advice, prescription renewal anytime. For very simple problems, I just email the doctor my concern and maybe a picture and they may prescribe something if it doesn't need an office visit. All at zero cost.

There are still a occasional billing hiccups but the big tradeoff is that I can only visit the Kaiser hospitals except if I'm traveling and have an emergency.

I'm member of a German public health fund (for political reasons, I could instead opt for cheaper private health insurance which many people argue is better, this option is not even available to most of the population). Last year, I went directly to a specialist for a non-urgent reason (two weeks between my call and the appointment) who recommend surgery which was scheduled in a top university hospital about four weeks later and performed by a highly regarded doctor. To make sure this is a good idea I visited another specialist before. I could have visited more if I wanted but there is really no reason to do that. I worried about lots of things but not one second about billing issues, waiting times, or quality of care.

Only thing I paid? The taxi ride home. For anything else there was my insurance card.

This is the same type of insurance plan 89% of the population uses – including the unemployed, middle managers, elderly, students, chronically ill, and always healthy.

> Only thing I paid? The taxi ride home. For anything else there was my insurance card.

Oh, so you don't pay for your insurance card? Nice deal! Because I also have public health insurance in Germany, and last time I checked, it cost 14% of my gross salary.

Which is why I mentioned that in my very first sentence. Of course insurance is not free, don't pretend anyone seriously thinks that.

For employees, half of the fee is payed by their employer.

Oh come on, please don't fall for this. The employer doesn't care who gets the money. He pays a fixed amount, and gets a fixed amount of work from you. Whether part of it goes straight to the insurance or to you first doesn't matter. The employer or employee part of the fee could be 100% instead. All parties will end up with the same amount of money.

and if you're unemployed (or unemployable) do you lose the ability to use the insurance? does it get cancelled if you don't pay?

The first month after getting unemployed is free, after that either the unemployment insurance or the government takes over your payment.

If you have to pay the fee on your own and miss at least two months (which can't really happen for regular employees as the fee is taken directly out of their paycheck) the fees can be collected with exactly the same procedure as other taxes. Until this happens you are only covered in an acute illness or pain situation, pregnancy, and for some preventive checkups. Health insurance (both private and public) can never be cancelled for nonpayment.

Nice anecdote. I also have a few (also in the USA, with allegedly premium 1percenter insurance):

> I can go straight to a specialist.

Me too. But if I schedule an appointment with any specialist it's going to be at least a month. And after that appointment, the followup will be in another two months. The appointment costs at least $400 and gets me about 10 minutes of face-time with the doctor but about one hour with the administrative/support staff.

> When I need non urgent surgery it's scheduled with a few weeks instead of months.

That is true, because that's the bread-and-butter of the McMedicine world. If however you need to do something which is not an emergency and slightly off the beaten path in terms of symptoms or which crosses medical specializations, good luck coordinating medical care. You will be scheduled in a couple of months to minimize liability, so that perhaps it goes away or you go away.

> my insurance

Not all insurances are equal, you or your employer are paying for that privileged and can obviously afford it.

You should price out insurance options for a minimum wage job and compare it to your own to see just how lucky you are.

> I can go straight to a specialist.

Cadillac insurance, PPO? Most people have HMOs which don't allow that.

In socialized medicine doctors usually aren't profit driven and their job/salary are dependent on the level of care they provide and not the number of patients they churn through.

I live in a country with socialized medicine and have paid for private treatment on a number of occasions because I wanted to have an elective issue taken care of on my timetable.

The difference is if I couldn't afford to pay, I would've been seen based on the urgency of the condition at no charge anyway.

> In the usa my insurance lets me go to 10 doctors for differing opinions. I can go straight to a specialist. When I need non urgent surgery it's scheduled with a few weeks instead of months.

For those who can afford that class of insurance, maybe. I had to wait 3 months to set up my primary care physician, and for a specialist the initial wait of 4 months turned into 6 after they rescheduled me. I lived in Boston where you pretty much can't throw a rock without accidentally hitting a physician.

Also, as someone who has lived in Germany and has family in Germany, these conservative anecdotes about the quality of American care in comparison to Europe always strike me as full of shit. They don't align with any reality.

I think I'd rather wait longer for elective surgery than gamble on ruining my children's chances at going to university because I might have to spend their tuition on medical bills.

Don't most countries with socialized healthcare also have free (or affordable) education?

I think there is a bit of dark satire there because in the US you can go bankrupt from the medical care, _and_ then go into even more debt from sending your kid even to a public university.

Canada doesn't have free post-secondary education but we have socialized healthcare.

When my daughter is old enough, if she wants to go to university or college, I will do my best to pay for as much as I can. The great thing about this country is that if she gets seriously sick I won't have to choose between her health and her education.

The US healthcare system is barbaric.

I can do the same in Germany with public insurance.

Probably similar in sweden. I'm sure I could get a second or third opinion without a problem (for anything potentially serious). Maybe someone would start question what I'm doing if I ask for >3 doctors but I'm not sure that's a bad thing.

>In the usa my insurance lets me go to 10 doctors for differing opinions

What insurance covers 9 second opinions?

You know that's possible everywhere? It's not like socialized healthcare imprisons doctors and forbids capitalism.

You can still go to 10 doctors, and pay for 9 of these visits.

US companies operating in the UK even tend to provide private healthcare insurance. Such "perk" makes UK employees chuckle, but hey, if you want private healthcare, the same US/multinational corporations operate in the UK too.

Adam Ruins Everything did an episode on this: https://www.youtube.com/watch?v=CeDOQpfaUc8

Such an awesome show -- thanks!!

Two years ago my wife (25 weeks pregnant with twins) was admitted to the hospital because of some concerning ultrasound findings for one of the twins they wanted to monitor closely. Two months later they were delivered by c-section, both healthy but very small (3 lb 14oz, and 1 lb 13oz). The bigger one spent ~3 weeks in the NICU and the smaller one ~7 weeks.

All told it was ~18 weeks of hospitalization (the only major procedure was the c-section, and obviously the NICU care is a little more intensive than average, but neither of the twins needed super high acuity care). Total bill was a bit over a million dollars. We were out of pocket ~$5k (our annual out of pocket max at the time).

Our daughter arrived a few days late after a long weekend at the hospital when my wife decided 50 hours are enough. A cesarian at 2 in the night sure wasn't everybody's favourite but the big eyes of the little grey bundle staring at us in her first minutes is the thing we'll never forget. Didn't cost us a cent, not the US, obviously.

I had twince born about 6 weeks early and it worked out to about $5k per day per kid in the NICU...not including the pyloric stenosis surgery for one or, pretty much, any of the other aspects of the childbirth. Pity they stayed at the most expensive hotel of their life and they really weren't there to see it.

With most insurance I feel like you will hit your max out of pocket before you would hit that amount. Depending on your insurance plan you could be talking $3,000-$10,000 max you would have to spend.

I mean this in the nicest possible way; the casual way Americans talk about these things makes me wonder if they aren't suffering some form of Stockholm syndrome.

The percentage of the population who don't have anything like that kind of money in savings is huge. And that is after you already pay huge amounts for insurance.

Medical bills are (according to some studies [0]) the leading cause of bankruptcy in the US. So not only do you have to recover from a serious accident or illness, and maybe the loss of work time associated with it, you also are left with either a crippling level of debt or the total loss of your assets, plus a lien on future income.

Additionally, the less money you make, the worse coverage you probably can afford, leaving you even more exposed.

You're absolutely right that it's insane that Americans talk about this as if it's just the only way things could work.

[0] https://www.cnbc.com/id/100840148

It's worse than that: "63% Of Americans Don't Have Enough Savings To Cover A $500 Emergency"


But who would keep the predatory loan economies afloat if they couldn't prey on people in their time of need?

I constantly hear economists saying people are spending outside their means, but when the price of getting sick with a throat infection is beyond their means, or will set their savings back by months or even years, is it really the people who are at fault?

And I'd add that we spend circa a half-trillion per year on various forms of advertising, marketing, PR, etc. (In comparison, the US spends $0.62 trillion/year on K-12 education.) The main purpose of that is to get people to spend money, often by demand generation.

Maybe if we don't want people spending beyond their means, we shouldn't have highly paid professions entirely devoted to getting people to spend without regard to their means.

I am pretty sure we do have Stockholm syndrome to some extent. Depending on your situation you can try to min/max the health insurance available to you to fit your needs.

Those who are fortunate to have good benefits are also usually able to set aside money for medical expenses. On the opposite side of things you end up having people with poor to no insurance with medical bills of more then they can afford to ever pay.

> you can try to min/max the health insurance available to you to fit your needs.

How do you do that though? The video which started this discussion is a young healthy woman who suddenly discovered she had a brain tumour. It could happen to anyone.

Fair enough, if I have a large amount of savings I might try to reduce the monthly payment by increasing the amount of risk I'm taking. But aren't those the people who would be most likely to have their insurance as part of their benefits package and so aren't paying for it directly anyway?

Where I work I am presented with multiple insurance options at various out of pocket costs both up front as well as over the course of the year. This means I can break down previous years medical expenses as well as projected expenses for the upcoming year to find the plan that offers me the best coverage for the best price.

In my case we are offered a HSA plan that the employer ends up paying us a small amount by contributions into your HSA account. That is a high deductible plan though so you will pay for everything until you hit that deductible. We are also offered more traditional 80/20 and 90/10 plans which have a much higher monthly cost but spaces out the cost of things more as the deductible is much lower.

The HSA plan is very risky for the first year as my max out of pocket was more then I was legally allowed to contribute to my HSA. The second year I had enough savings put away where even if I ended up with a giant expensive issue I had enough put away for that max out of pocket number. This plays well into the scenario in the video. I have to protect myself going forward from the unforeseen medical issues. In my current situation that means making sure I have at least 1 years worth of my max out of pocket expenses saved up. Now I am covered even if unexpected things happen.

As a single adult with a good job it is much easier then if I had a family or was working a lower paying job. Even then you can do all the calculations but the risk factor goes up with the more people you have as the unknown portion grows. There is no good solution, that I know of, with our current healthcare system. I just try to play the game and do my best to stay healthy and prepare for the day when I am not.

For me it’s more that I’ve accepted it’s hopeless.

Like gun control the issue has reached a stable equilibrium of political stupidity and I don’t see how it could change in the current climate.

Ever been around someone with, say, cancer and experienced the casual way they might talk about procedures that would horrify you (or at least make you a bit squeamish)? No one sympathizes with their cancer, but one would do well to make peace with reality.

I have no sympathy whatsoever for my hostage-takers, but I'm unlikely to fight my way out of this one, so might as well go back to talking about out-of-pocket maximums until I can make a shiv out of this toothpick.

This type of surgery has likely hit her max out of pocket, so she should be clear of medical expenses for the rest of the year.

Because you asked about Medicare specifically, that information IS somewhat available. It'll take some digging into it but the raw data is available at https://www.cms.gov/Medicare/Medicare-Fee-for-Service-Paymen...

I will tell you it's HEAVILY dependent on the zip code and procedures.

Private insurance is a whole different mess, likely going to hit deductible and be done. Last time my partner had to have surgery and billed insurance she paid $1000 and the insurance picked up the other $10k+ (precancerous mass removal, 45 minute surgery).

I remember someone on HN recommending to send a copy of the bill to some health billing transparency project, but I can't find the right link. Google comes up with https://www.fairhealthconsumer.org/ although I'm pretty sure it's a different service (they don't use the submitted bills from what I understand)

What's with the strange wording, why do they call patients "healthcare consumers" now?

If the patient is a dependent of someone, or a minor, or dies, does someone else pay? Is the consumer the person paying, or the patient?

I thought NPR has/had one, but can't find a reference.

Unless you have access to a private repository of billing and insurance data, no.

There is no publicly available source for price cross lookups. This is largely due to the fact that billing, coverage and pricing varies not only from hospital to hospital but even within the same provider on the same service (a given CPT). So now, there is no way to know the likeness of billing/coverage and it's also highly likely that if she disputes the claim, or there is a renegotiation then she will end up paying significantly less.

Many insurance plans have a yearly max you pay for covered services. For my plan it's way less than 38k. I believe it's something like 10-12k

Did she do it in the US? I was under the impression she did it in Sweden, which would cost her $0.

EDIT: Ok, she lives in San Fransisco now. Didn't know.

If she is covered on a self-only health insurance plan, she has to pay at most $7,350. Source: https://www.shrm.org/resourcesandtools/hr-topics/benefits/pa...

$38k is probably unlikely, she'll have hit her deductible first which will have made several things fully covered and other things probably some% coinsurance, and then later hit the out of pocket limit on the plan and be fully covered from there onwards.

It really depends. I have an PPO / HSA plan where I have discounts up to a certain set "total annual amount" (currently around $5k) -- then insurance kicks in and I start paying a lot less.

That $5k (for me) resets every year.

I recently had a heart thing that put me in the hospital and included a med-flight to the hospital. Total bill was close to $40,000 if i'm not mistaken. I had to cover the $4,000 deductible but after that everything was covered. Additionally, my employer is part of something I don't understand(insurance is too damn confusing), I think its an HSA which covered an additional $2,000 towards my deductible. End of the day I only had to pay $2,000 out of pocket. Not bad.

I hope you are doing OK now, and I'm glad your insurance/billing situation was resolved relatively easily.

I really, really wish insurance was less confusing though! So many copays, coinsurances, deductibles, out of pocket maximum, lifetime maximum, different tiers of drug prices, etc etc.

That stuff should be made simple by law.

This can’t be made simple by law when the lawmakers profit off the current situation.

Maybe the deductible part is a fixed amount and not a % of the total bill?

(I have no knowledge of health care in the US - both countries I lived in have free health care)

The deductible is (in my experience) a fixed amount. I have to pay about $5000 out of pocket before everything becomes "free".

Many plans now have a co-insurance percent, so something like 20-80% is billable back to the patient after the deductible up to the out of pocket maximum (or Really Real Deductable as I call it)

Having gone through all of this recently with my little brother, I can definitely relate. Her account of the pre and post surgery are spot on, as well as the worries around this operation (will he survive? will his personality change? will the operation be a success? what will be the consequences?).

And I'm glad she had insurance, even more so considering she lives in the US. In our case he had it too, but where we live the top neurosurgeons unfortunately don't accept it – you need to pay the operation yourself. It can be incredibly expensive as she mentioned.

It's great to hear she's doing fine. I don't recall ever being so happy about the health situation of someone I didn't know 10 minutes before. What a beautiful video.

Even if the surgeon doesn't deal with the insurance company directly, you should at least be able to submit the bill to them yourself?

The way it works in Brazil – maybe in other similar countries as well – is that insurance only covers specific doctors which have partnerships with the insurer. A common question when you're talking about a doctor or call his office is "which insurance plans does she accept?". Usually it's 2 or 3 plans, and thus you end up maintaining in your life a network of doctors that work with your specific insurance – so that whenever you have a problem you know where you can get treatment without spending extra.

This creates a relationship where doctors get paid much less than they would normally charge (e.g. $20 for an insurance-paid appointment vs. $100 for a customer-paid appointment). But this way they end up receiving a steady number of clients from the insurer. And in most cases doctors have to accept this deal because they don't have enough demand on their own.

Naturally, that's not the case for top neurosurgeons. They have way too much demand and can make only a few surgeries per week. So virtually none of the top ones agree to being "accredited". They make an order of magnitude more money by charging the customer directly.

If you decide to use a "non-accredited" doctor you have to pay out of your own pocket. Typical insurers won't reimburse you in this case, and even the high end ones will give you back only up to 10 or 15%. They do cover for hospital expenses (room, nurses, meals, etc.), but these are a small fraction of the cost of brain surgery.

There are some different insurance plans that will reimburse your customer-paid appointments/procedures, but – since the cost for these visits is way higher – these are plans that only multi-millionaires can afford.

Huh, why does the doctor care who pays the bill?

As explained on the other reply in this thread, because insurers pay to doctors a standardized amount based on the type of visit/exam/procedure. So doctors don’t accept insurance whenever they can make more money by charging the consumer directly.

That's put a smile on my face to see her looking well but ouch, that's quite a bill. I had a transnasal craniotomy (surgery through the nose) back in 2012 to remove a pituitary tumour. Not technically brain surgery, but they did need to cut a hole in my skull to get to it. I spent a week or so in ICU to recover.

Luckily being UK based I didn't have a bill of any kind to pay afterwards and was paid in full while I recovered.

I’ve never worried so much about someone I never actually met. The time after her surgery without updates on her twitter account was hard and it’s funny to see that a lot of people felt that way (if you read the tweets from that time you’ll see what I am talking about).

It is great to see her doing so well. Medicine has come a long way... the bills not so much.

It's really sobering to think about how often this happens per day, to less charismatic/attractive people without social media presences or worse/no insurance. Very happy for Simone (and felt the same way as you following the story) but also trying to take the opportune to empathize with a wider group of people.

It's an odd thought experiment to follow through that in the US we're supplying evolutionary selection for well networked extroverts via our healthcare + media and GoFundMe type mechanisms.

Yikes, what a bill. My mother had brain surgery a few years ago and didn’t have to pay for anything besides the insurance she always pay for which amounts to a few hundred euros a year.

>Yikes, what a bill.

Yeah, cancer-related bills can add up fast. Worse, they'll send you bills for years after the fact... my father had been dead almost a decade from his cancer and the occasional bill would still come and my mom would have to spend hours arguing with them on the phone "uh yeah, he's dead, he's been dead, this happened a decade ago, get your shit together" and they'd usually be all 'oops our bad' almost like they were trying to double dip.

We need some serious healthcare reform in the US.

The worst thing about this is that it teaches patients to ignore bills from hospitals, because so much of the time the bill is bullshit. They're just fishing for rubes that will pay it without realizing that the insurance is already paying for it.

Then when a real bill comes they get angry at you for ignoring it, even though it was mostly indistinguishable from their bullshit bills.

We've encountered double dipping too, in dentist's bills and various healthcare bills.

It's this whole circular firing squad of people charging others as much as possible for every little thing. Individually you may do OK, but the system is made more and more complex and stressful with each extra charge.

Can’t imagine how hurtful and frustrating that can be. People make jokes about the health care system in th US, but in reality there isn’t anything funny about it.

The terribly low degree of accuracy in medical billing might be partially why the credit agencies are placing lower weight on medical debt than they used to.

In the UK there's a time limit of six years on starting any kind of civil action. If a business discovers they forgot to invoice someone ten years ago they have to write it off.

This video literally made my morning. If anyone deserves a successful recovery it's Simone. I admire her authenticity and humor, even in the face of something as terrifying as brain surgery. Hopefully when she's feeling up to it we'll be entertained again by shitty robots again :)

So this country doesn't make enough money to be able to keep some unlucky people alive without throwing them or their family into poverty? Or is it simply that nobody cares for anybody else as long as you are better off then them?

A lot of people have a lack of imagination and empathy. It's not a problem until it happens to them.

If everyone really internalized that it could just as easily happen to them, I bet things would change pretty quick.

I think the second explanation works better - if we look at the way people vote. It's a religious thing to abandon people in suffering to banks and creditors. This way the holy right to make money is put in the first position.

I believe it is highly American to believe in self-sufficiency and to minimize the role of luck in success or failure. Whether we go back to the Protestant work ethic, the Puritan sensibility, gold rushes, unfettered capitalism, the Gilded Age, and our current second gilded age, to me it is clear that caring for others is a secondary concern for many Americans. Just look at the "makers/takers" model of our populace put forward by the top current lawmakers. In this framework, sick people are takers and capitalists are makers.

It's meritocracy - https://www.youtube.com/watch?v=bTDGdKaMDhQ - If you're taught you can achieve success by just working hard enough, then the opposite must be true, that poor people are poor because they're lazy.

Paul Krugman has also mentioned, the insane thing is, many of the rich in the USA who inherited their wealth or got lucky with investments also believe that they're successful not because of luck, but because they're hard workers...

> to believe in self-sufficiency and to minimize the role of luck in success or failure.

I think that, frankly, those two are in opposition to one another. Self-sufficiency at scale is a game of numbers and luck; systems of thinking that try to put more emphasis on mutual support and shared responsibility for success seem to work more towards eliminating luck as a factor.

This is never how it's framed when you actually discuss these problems with people who believe in small government. Every time I've pressed the issue, it's a two pronged response:

A) Healthcare costs are too high, and it's due to malpractice/overregulation/other government influences. B) In the event that an individual can't afford healthcare, the community will pick up the tab -- and have the money to do it, since the government isn't taxing it away from them.

Ya I have never once heard of someone's neighbor or whoever picking up their medical tab for them.

> American to believe in self-sufficiency and to minimize the role of luck

Not at all:


If you multiply inequality times lack of social mobility, US scores at the bottom across developed countries.

Decades of pop-econ has pushed the narrative that GDP or Purchasing Power Parity is somehow related to how individuals can access capital.

It always finds the form of "America is the richest country in the world, yet they can't [insert problem]."

This assumes that there is some objective resource need recognition system and misses that there is no overarching explicit capital allocation system to direct funds in such a way.

The cash balance of Apple corporation has no connection to whether a blogger can afford brain surgery or not.

So I'm not sure why this keeps coming up.

Except that's not true. Our government could very, very, very easily enact single payer, and we have plenty enough wealth to do it.

>...and we have plenty enough wealth to do it.

Whose wealth?

Yours (if you are a US citizen), mine, the 1%, the other 99%...at least a government mandated reform of the private healthcare system should be able to enforce transparent pricing structures and fight graft.

So everyone's wealth is free for the taking?

Everyone's wealth is already being taken, but spent in fucking weird ways.

The US government pays more for healthcare than some other western countries, but gets worse outcomes across a range of measures.

I merely gave a vague answer to a vague question. Allow me to be specific: The US has a progressive tax structure which could be put to better use taking care of it's own citizens instead of attacking the rest of the world, and letting mega-corporations subvert environmental protections.

It wasn't vague and your reply demonstrates you knew exactly what I was talking about. The wealth of the US is not some collective pot of gold to be spent on X. It is owned by individuals and if you take it, spending on X is a mere detail. You are just arguing for Y instead of X.

My wealth is already being used to fight insurgents in parts of the world we have zero business being in.

This is true but this is what follows if you (generic you, not you specifically) believe that the wealth of the US is some collective pot of gold to be spend on X. You don't like X but would rather it be spent on Y is not a fundamental change but a detail.

That wealth was able to be generated due to everyone coming together to do things like spend on education, roads, fire protection, etc.

Your comment basically restates the same argument only backward:

"America has enough wealth, why can't we just enact single payer?"

It completely ignores the structural challenges to doing that.

What's the counterargument to PPP/

It's still an aggregate number, and doesn't take into account things like wealth inequality, social mobility etc... which we seem to care about more. It also doesn't differentiate between goods broadly - just in relation to currency indexes.


I think the fundamental personal issue in this country is that nobody wants to be told exactly what their government-mandated health regimen should be, or have the government decide which procedures they'll be allowed to have for their condition.

That ultimately means that they're locked into what their insurance company mandated health regimen should be. But at least they can sort of choose their insurer, or no insurer (which is usually 10-100 times cheaper on the total medical bill).

When the government is responsible for your healthcare, and also has a fiduciary duty to it's taxpayers, then the government has a further responsibility to restrict what you can eat, drink and do (not just safe or unsafe, but to penalize snack foods and restrict sports that have a higher risk of injury.)

All of a sudden, my choice to say, engage in martial arts or boxing, goes from a personal decision (Do I want to do this? Do I have the money for the gear? Is this in my risk comfort zone?) to a decision involving the government (is this behavior too risky for the general pool of insured people?)

Healthcare is not free. Healthcare research and technology is in fact, extremely expensive. Somebody is paying - whether that's the individual via an insurance pool or the government through taxpayers. Does the person paying your bill have your same prerogatives in mind?

Please provide an example of a country with socialized/universal healthcare that prevents one from performing martial arts.

You can tell, based on what we are badgered about in the UK at least, what stuff is presumably expensive to treat: drinking-related stuff (health effects, violence, general misadventure), smoking (esp. tobacco), eating shit food and not doing any exercise, driving too fast or carelessly and getting into an accident (see also: drinking).

I've never seen anything about martial arts, or indeed about sports in general. I'm sure it costs more than £0/year to treat the resulting injuries, just not enough more to make it worth worrying about by comparison.

Get well, Simone! Truly amazing that you were able to get your vision fully restored.

Real life on YouTube is better than any other content out there ;)

She is so funny, I love the pun story with Dr. Reddy.

Great human being, glad things went well for her.

Glad to see she's doing alright.

I played the brain tumour game a few years back. Healing can really take the wind out of your sails so I'm glad to see she still seems to have a lot of energy.

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