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EFF Co-Founder Announces Benefit Concert to Pay His Medical Bills (twitter.com)
An anoymous Slashdot reader reports:
"I was dead for about 8 mins. on Wed. eve," EFF co-founder John Perry Barlow posted last year on Facebook. "total cardiac arrest...sad to report, no Ascending Light." The cyber-rights activist told the San Francisco Chronicle that he had gone "down the tunnel of eternity and it turned out to be a cheap carnival ride." He paused for a moment. "Probably not cheap, though."
Yesterday Barlow posted a Twitter update announcing a big benefit concert in Mill Valley, California to help pay his mounting medical bills on Monday, October 24th. Performers will include Bob Weir (also of The Grateful Dead), Jerry Harrison (of The Talking Heads), Lukas Nelson, Members of The String Cheese Incident, Sean Lennon and Les Claypool, plus 85-year-old folk singer Ramblin' Jack Elliott, as well as "special guests."
Barlow's family describes the last 18 months as a "medical incarceration" with "a dizzying array of medical events and complications" that has depleted his savings and insurance benefits. They've also set up a site for donations from "his fellow innovators, artists, cowboys, and partners-in-crime, to help us provide the quality of care necessary for Barlow's recovery."
Yesterday Barlow posted a Twitter update announcing a big benefit concert in Mill Valley, California to help pay his mounting medical bills on Monday, October 24th. Performers will include Bob Weir (also of The Grateful Dead), Jerry Harrison (of The Talking Heads), Lukas Nelson, Members of The String Cheese Incident, Sean Lennon and Les Claypool, plus 85-year-old folk singer Ramblin' Jack Elliott, as well as "special guests."
Barlow's family describes the last 18 months as a "medical incarceration" with "a dizzying array of medical events and complications" that has depleted his savings and insurance benefits. They've also set up a site for donations from "his fellow innovators, artists, cowboys, and partners-in-crime, to help us provide the quality of care necessary for Barlow's recovery."
"Affordable" in the Affordable Care Act is very much akin to "unlimited" in unlimited bandwidth in a mobile phone contract. It's not so much an adjective as it is a branding label.
Seriously, complain as much as you want about it, socialized health care is the best thing a country can do for its people.
That and actually regulating the pricing on medical hardware/drugs, it's ridiculously overpriced in the US compared to the same service in say, Canada, without insurances.
The Affordable Care Act did a couple of things - dropped the 'pre existing condition' clause for private insurance (if you're sick, we aren't going to cover you, but you're certainly welcome to pay into the program in the event you get some other illness down the road - while you're still healthy enough to pay the premium), made insurers create lower (not low by any means) marginally useful insurance policies and tried to force everyone to get some sort of medical insurance. It also gave insurers the ability to lock in double digit profits for another decade. And gave me even more reasons to write run on sentences.
We don't know just what insurance he had (TFS implies that he had some) but if he had a standard commercial policy with a 1-2 million dollar limit, let me point out two interesting points:
- A year long illness can easily kick you into the million dollar club. A bad MI, a couple of weeks in the ICU, a couple more weeks in a step down unit, rehab, a few more procedures, a couple of expensive drugs and a host of billing errors and you're there. Hell, I'm an ER doc and I can run up $100,000 easy peasy. That's for the first couple of HOURS.
- MOST insurances have a 20% copay. Crappy ones don't drop the copay until you get to the quarter million dollar range although most have an out of pocket limit of at most $10,000 or so.
So, lets say he had 'OK' insurance. He's limited to $10K out of pocket plus an enormous number of 'little' expenses. Things that weren't covered, billing errors (did I mention that before>?), lost time, wages, home assistance, family issues .....
He's a lawyer, but probably not that kind of lawyer that has 20K sitting in his savings account.
Yeah, the money goes fast. The most popular thing at our local Elk's Club is drinking, the next most popular is various fund raisers for somebody or others medical bills.
USA! USA! USA!
Faster! Faster! Faster would be better!
I wonder, though how likely it is that any regular person would be able to get anyone else to pay their bills.
"Affordable" in the Affordable Care Act is very much akin to "unlimited" in unlimited bandwidth in a mobile phone contract. It's not so much an adjective as it is a branding label.
Still. Every insurance plan has an out-of-pocket maximum and the law prevents life-time limits on benefits. While it's possible for deductibles and out-of-pocket maximums to be quite high, I'm dubious about the claim, "depleted his savings and insurance benefits" -- unless he's not good at managing his own money. To be fair, the summary did say this happened over 18 months, so there could be some cost build up due to his case exceeding a calendar year and the deductible and out-of-pocket fees being reset (I don't know if it works that way for a continuing treatment).
It must have been something you assimilated. . . .
Exactly right. The anti-competitiveness of hospital, drug, and doctor prices in the USA is the problem.
Nobody else gets away with charging these prices without disclosing them up front. (Try that with car repairs)
Nobody else gets away with charging different prices based on how you pay. (Try that with car repairs)
Nobody else gets away with forcing you to buy 'protection' from the racket. (aka health insurance)
Nobody else gets away with doing it under duress.
They are criminals!
Yep, criminal and insane but nothing I can do about it. My particular charges are pretty modest, maybe $1000 or so for a couple of hours of work. But that helicopter gets expensive, the nice cardiac team has six highly paid professionals tending to it in three shifts 24 x 7, not to mention the suite costs several million dollars itself. ICU beds typically run several thousand per day. There are drugs that are three figures per dose.
I'd be the first to complain about the costs. I'm the one who gets yelled at in the supermarket, not the hospital CFO.
It's a fucking mess.
Faster! Faster! Faster would be better!
life without steak and ice cream sucks but death is worse.
Lies!
Sorry, posting to undo bad mod.
Anyone have a manual for this trackpad?
There most certainly is preferential treatment. If you have money, you can get lots of treatment. If you have social contacts, you might get some help (better to have money, it's more consistent).
Even in the Socialist Democracies with government controlled health care systems, the Golden Rule still applies. You can always pay extra for shiny stuff. The sad part about American Healthcare is that you really need to be in the top 5% before you can be assured that a medical issue won't bankrupt you. That's a pretty damning number.
For most Americans in this sort of condundrum, the most effective thing to do is to declare bankruptcy. Of course, that is a harsh punishment in an of itself but it seems to be the preferred way to go.
Then you can get on Medicaid (the State / Federal low income medical insurance system) and get free - and fairly high quality** - healthcare for life.
** Can depend dramatically on your location, religious preference and citizenship status. YMMV. Do Not Taunt Happy Fun Ball.
Faster! Faster! Faster would be better!
Why don't you just roll over and die like the rest of us who can't afford medical bills?
Or just move to a country with a sane health system, rather than the best health system in the world*.
*As voted by the US Medical magazine.
In America, we put the dollar sign before EVERYTHING else.
How utterly barbaric is the USA ? One of the most technologically advanced societies on the planet yet you can die because you have no money and are unfortunate enough to need medical treatment..
And all you stupid brainwashed Yanks claim your health care is better than the rest of the world ? Really ? You must love the taste of that Kool aid.
Oh sorry I forgot socialism (or all joining in to do something together) = bad in your tiny minds.
Thank fuck I live in England where we have the utterly civilized NHS. Thankfully I've been lucky enough (so far) to only pay into the system without needing much myself but I know people who've needed treatment, sometimes quite expensive treatment, and I'm proud to say that my taxes helped pay for them. I will be happy to spend my whole life paying into the NHS without ever needing it myself.
Your American medical "system" is a fucking joke. It's like something out of the middle ages.
Sky subscribers are morons. They pay to be advertised at !
Dozens of countries have solved the problems in the second paragraph by taxing unhealthy shit higher to offset healthcare costs and through encouraging people to volunteer organ donation by educating them loudly on the good you can do after death. The better countries also heavily regulate advertising of unhealthy things, funding healthy eating and exercise programmes and providing preventative healthcare. In these places, the libertarian "anyone should be able to persuade anyone into becoming addicted to anything" is considered a crude first approximation to a working society. Unfortunately, the US is still quite close to that attitude, which is fundamentalist to the point of religious (as an ex Eastern European, reminds me of Soviet Marxism, except the "god" is the Invisible Hand instead of dialectical materialism).
Comment removed based on user account deletion
> I won't outright object to a single-payer tax supported medical system, but it's pretty obvious that we'd need to put some rules into place as it's not financially viable to provide the unlimited care that people are capable of consuming.
And yet countries like Canada where I live have a lower healthcare spend per capita, we have a longer life expectancy, and nobody here goes bankrupt from medical conditions. The problem in the US isn't that the people will "consume too much healthcare", the problem is you have a system built where several levels of companies have their hands out to gouge as much as they can. In the US the hospitals and the insurance companies negotiate prices for everything and with several companies in the mix everyone wants (and gets) their piece. In Canada, we have a single payer system where the government runs a board of doctors who determine what a procedure should cost and that is what a doctor or hospital will be paid for that procedure or visit. Period.
>The most obvious are that taxpayers shouldn't be forced to subsidize the consequences if your unhealthy lifestyle.
Hello slippery slope. What's an unhealthy lifestyle? Obesity sure, same with smoking and drinking. But what about other things? Play football, hockey, basketball? Go skydiving, rock climbing, biking or kayaking? Skiing? Construction? All of those activities and more can lead to very expensive injuries. If premiums go up for unhealthy lifestyles, why not risky ones too? Hell for that matter what about using a car, driver or passenger? Statistically the average person will be in 2.7 significant car accidents in their lifetime. So really if you use vehicles it's not a matter of if, but when you will become a burden to your healthcare provider. Better bump those peoples' premiums too....
It doesn't really matter. Unless you're living paycheck to paycheck with no savings or credit, it really shouldn't be a problem. This is not the kind of guy we should be throwing a pity party for.
You have an out of pocket limit for the year. After that, stuff should be free. If that's not the case, then how did he manage that?
This is a non-trivial issue.
My medical bills probably make his look puny. I have been sicker over a longer period of time. I probably have been in the hospital more. I have been on very expensive drugs.
This nonsense is no excuse for socialized medicine.
A Pirate and a Puritan look the same on a balance sheet.
The most obvious are that taxpayers shouldn't be forced to subsidize the consequences if your unhealthy lifestyle. If you smoke and get lung cancer, tough shit. Drink and ruin your liver, same deal. Obesity related medical issues are your own responsibility as well. Also, mandatory requirement that if you want to use the system, you're automatically an organ donor. Throw in some tax deductions (or alternatively just higher taxes for anyone who wouldn't get the "deduction") for people who generally try to stay in reasonable health and it's a reasonable system.
At this point I think it would be wise to point out that everybody dies sometime, somehow and old people tend to have a lot of medical problems. Most people dying from "lifestyle diseases" make it through most their taxable income years, if you drop dead from cardiac arrest at 60 you're still probably cheaper than a fitness freak that goes down fighting at 90 after a decade of deteriorating health going in and out of hospital. And to put it bluntly, very often it doesn't matter how or when it's a matter of whether there's something to be done. I've heard stories of apparently healthy people going to bed and simply not waking up, game over. Very cheap, very easy just issue the death certificate and move on. Others are caught in critical condition and spend days or weeks on the brink of death. There's a huge, huge variation that means the risk and payout won't correlate well no matter what you do.
The other part is, do you really want a society counting the number of beers and smoke and BMI and any risky or stupid activity you do? Orwell would love it, but no just no. I think you should realized that the main reason it won't get crazy abused is that being sick and injured is not fun and generally painful and uncomfortable. And you will spend a lot of time waiting in line unless you're in critical need and in general, you just don't cut yourself to get a free band-aid. Not when it's only going to be put on a bleed wound, it's not like you can keep them and sell them. Now benefits, there's a lot of fraud with disability benefits, a little with some highly regulated drugs that are monitored carefully... but healthcare in general? People are there because they need it, not because they want to.
Live today, because you never know what tomorrow brings
> You have inferior care that gets people killed.
Holy shit, it's a real in the flesh idiot who has bought the US healthcare astroturf hook line and sinker. You don't live here, you don't use our system and yet you feel comfortable slinging bullshit like that around?
> You have arbitrary limits on expensive care that are a death sentence.
We don't no. But do look into US healthcare providers' lifetime limits and until the ACA those "preexisting conditions".
> You don't develop the interesting new treatments.
Horse. Shit. Insulin, Rhogam, the Salk polio vaccine trial, T - cells, AIDS medications, the ebola vaccine, etc.
You should really educate yourself. You're kind of an embarrassment.
Then why are you commenting on what is predominantly a US site?
Fuck off, Canuck dyke.
All butt-hurt because you don't want to hear the truth about how the Affordable Care Act is the worst health-care plan in the western world, and that even Cuba has free health care for everyone?
"Transparent" is a shit show that trades on every stereotype going. A man in drag is NOT a transsexual.
Nobody in the USA should have to worry about paying medical bills. We need a single-payer health care system.
A single-payer system would:
—Cover everybody
—Eliminate co-pays and deductibles making health care affordable and accessible to everybody
—Increase freedom by allowing people to choose any doctor or hospital
—Reduce overall medical costs for the nation
—Prevent the nation going bankrupt from excessive health care costs
Eventually, we will move to a single-payer system because financially we will have no choice.
Not an infarction though. I was also dead for 8 Minutes. I was 35 and was in good health, maybe 20lbs more than ideal for my height, I swam and cycled a few times a week. But there you go, I coded and died. CPR was performed, then I self-resuscitated (doctors words, not mine), but had presented complete heart failure (everything inconclusive, viral cardio myopathy and myocarditis are the likely causes - but I don't smoke, do drugs and don't really drink that often). I had huge clots in my ventricles.
The doctors were surprised that I had survived - bi-ventricle failure has a very minute chance of survival. I was fortunate, though. I coded at the hospital as I had checked myself in thinking I just had pneumonia (I also hadn't slept in a month). I woke up a week later. Barlow said there are no angels, cherubs, etc. He's right. There's nothing - and if there was something it was straight out of that hallway in Beetlejuice. But that was really just me barely conscious while I was medically sedated. I will say that if you have a bad doctor they can kill you all the same even if you do code there. The ED doc was ignoring me and a friend (who is a also a doctor - and could pass for Greg House) showed up to take charge when the ED doctor tried to brush my friend off and said, "Everyone here is sick." That ED doc was let go not long after that.
I was on ECMO then I was put on a bi-vad and expected to have one path: to transplant. But I was fortunate, I recovered and the bi-vad was explanted. That's just as rare to happen as surviving massive cardiac arrest. At my hospital, I was one of four patients out of ~100 who were explanted without a transplant over 15 years. I was on the transplant list, however and the transplant team was ready to promote me to 1A when my echo and right-heart cath showed massive improvement. Not everything is perfect, I'm still on the list - it's just something that I'm going to have to deal with further down the line. Over a calendar year, I totaled maybe 10 or 11 weeks in the hospital. ICU, step-down and physical therapy for the first go around because I had atrophy from being immobile for 8 days.
With insurance, I was fortunate. I was fully covered. I might not have a ridiculously paying job, but my company did go for the best benefits packages. My out of pocket for all of this was less than $1,000 (most of that was meds and follow up appointments - none was the actual stay in the hospital). It's scary to me that when the time actually comes for a transplant (for me it's not if, it's just when) that my insurance situation will have changed. With my current plan, I've been approved. I don't need one right now, but when the time comes, what then?
What's even worse, IMHO, is that the doctors, nurses, transplant team, etc. know this and really can't do anything except to tell you to fundraise if you don't have the money. They even have seminars and tell you to use gofundme and other crowdsourcing avenues to raise money. All the people I've met who had been on the list for years on various VADs or pic lines for a near constant stream of medicine who couldn't afford to live was humbling when I had it relatively easy. The anger, pain, and confusion of the unknown is just starting to sink in for me now that I'm actually planning long term for this and it's changed what I thought was a plan to get married and have a family. Now I'm second guessing that entirely because I can't stand the thought of someone potentially being burdened financially or emotionally with what I have to deal with.
I wish Barlow all the best and hope he succeeds in his fund raising for his costs. I wish it was that easy for more people who end up in situations like this.
Wow, I did not expect to write all of this. I just realized I've never spoken publicly (even anonymously) about what I've been through.
Hi random internet person. The WHO who isn't some random person on a forum rank Canada 7 nations ahead of the USA in its global rankings. These include first and foremost the quality of life (ability to live, ability to live well, and ability to receive healthcare).
So... You're talking out of your arse.
Thanks. That is all.
There are several areas in which the USA provides world class care. To the rich. In most areas, it's rather depressing to look at the figures though.
Here is the summary from a report by The Commonwealth Fund, which was set up to improve healthcare in the USA in 1918: US healthcare from a global perspective
Highlights:
- High U.S. health care spending due to greater use of medical technology, health care prices
- U.S. spends more on health care than other high-income countries but has worse outcomes
- Health care spending as % of gross GDP, USA vs Canada: 17.1% versus 10.7% (2013)
Some causes:
"Data published by the International Federation of Health Plans suggest that hospital and physician prices for procedures were highest in the U.S. in 2013.10 The average price of bypass surgery was $75,345 in the U.S. This is more than $30,000 higher than in the second-highest country, Australia, where the procedure costs $42,130. According to the same data source, MRI and CT scans were also most expensive in the U.S. While these pricing data are subject to significant methodological limitations, they illustrate a pattern of significantly higher prices in many areas of U.S. health care.
Other studies have observed high U.S. prices for pharmaceuticals. A 2013 investigation by Kanavos and colleagues created a cross-national price index for a basket of widely used in-patent pharmaceuticals. In 2010, all countries studied had lower prices than the U.S. In Australia, Canada, and the United Kingdom, prices were about 50 percent lower.11"
But perhaps, if you pay more, you get more?
"On several measures of population health, Americans had worse outcomes than their international peers. "
Okay, but we know a lot of Americans have been smoking more than other folks, and are more... big-boned. Right?
"The Institute of Medicine found that poorer health in the U.S. was not simply the result of economic, social, or racial and ethnic disadvantages—even well-off, nonsmoking, nonobese Americans appear in worse health than their counterparts abroad."
But cancer care is top notch in the USA.
"One area where the U.S. appeared to have comparatively good health outcomes was cancer care. Other research based on survival rates also suggests that U.S. cancer care is above average, though these studies are disputed on methodological grounds."
However: "The opposite trend appears for ischemic heart disease, where the U.S. had among the highest mortality rates in 2013—128 per 100,000 population compared with 95 in the median OECD country."
To summarize: if you state that Canada has inferior care (imploying that it goes across the board), despite research suggesting the opposite is true, I'd like to see citations.
Therefore, by the (faulty) logic you're using, you're just a cow with a keyboard - osu-neko (2604)
From the HHS website:
So the point remains - there are no annual or lifetime limits allowed by law.
What this suggests is that Barlow is pursuing medically questionable treatments that insurance won't cover, and is asking everybody to pay for his experimental medical journey. Good luck to him, but I'm having trouble mustering a lot of sympathy for his financial straits.
I've just helped get my mother in law (who recently immigrated from Russia) a health care plan... I've been eyeballs-deep in health plan fine print, and there are very reasonable out-of-pocket annual limits on all of these plans, so I'm not exactly sure how he's managing to financially ruin himself, when my mother in law (who is a retired office worker on a ~250 dollar per month russian pension) can get health care that offers her something like a 5k yearly out of pocket maximum. For a lawyer, 5k yearly should not mean financial ruin. My wife and I have decent IT jobs, and support our two kids plus her parents, and 5k yearly wouldn't be ruin for us.
Well, let me know how one will afford that "out of pocket max" of ~$14k/year + $15k/year for the 'average' insurance cost = $29k in health care costs alone and then you still have to pay several thousands in Medicare (the thing that one time was supposed to be used to pay for 'universal health care'), Social Security and other taxes.
My premiums have risen to ~$1.5k/month for a family (we were promised ~$400 after ACA) and both my deductible (before 1.5k, now 5k) and out of pocket max (before 3k, now 10k) makes health care practically unaffordable, that is because my private insurance now carries the cost of ObamaCare (or so they say) and the maximum limits Obama promised to impose during the proposal of ObamaCare are either non-existent (as in the premium caps) or about 10-100x as high as promised.
The average ACA insurance cost is now ~22% of your wages, where before ACA they were only ~10-15% and will increase to ~27% in the next 5 years.
Insurance used to be affordable before ACA came along, it's just people had the choice and chose not to, Darwinism at it's best I would say. In many cases Medicare and individual states would take care of the 'gaps'.
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I love the "consumer" model of health care....guess what, you aren't. Medical stuff is the only thing you cannot price shop or even compare. Even if you could, the hospital will charge you differently for different insurers...and as I found out once....if you don't hit the deductable (five stitches from a minor accident) you don't even get your insurance company rates (all that money and I'm not even in the Buyer's Club ?) When you get really sick, every single thing you use is billed. Bed. Docs...Drugs...machines (and when a relative had a breast biop done, they charged for each use of the machine, not just "turn on and use". No normal person can keep track of this, and the hospitals know it. Insurers, who have an idea, will fight tooth and nail on costs and fees. What we end up with now is two tiers. If you can get into or afford private insurance, not an ACA plan, you are working for Government or a very large company. If you don't, you are stuck with an ACA plan, which will NOT cover a majority of your doctors, or even possibly the hospital. Yes, folks who work for Govt. or big companies are still somewhat protected from the health insurance nightmare. So, yes, it is very conceivable that this person is getting nailed by "out of network" charges. When you are laying in a hospital bed, you don't ask the attending if they take Aetna or Blue Cross, and send them hither if they say no. For years, US insurers have benefited by their claims practices, fobbing off the poor and old on the Government, and skimming the cream of "healthy" risk pools. The ACA stopped the worst practices, but also forced anyone who could to leave the exchange plans. I got an ACA plan once. Every single provider..my kids pediatrician....wife's ob/gyn....my GP...the allergiest "oh we're sorry we don't accept any insurance from the exchange". You are all the access of a Medicaid patient but you pay full price for the lack of services....and I used to pay 1/3 the price for the same docs to smile at me and take a $20 copay...so an ACA plan is a non-starter in the NYC area and I'd seriously consider paying the tax penalty if I was unable to get coverage elsewhere. The insurance industry has managed to propagandize the low information bits of our population to not want "socialist" medicine. I've been exposed to the Canada and German systems...while not perfect, they are a hell of a lot more fair and reasonable than the mosh that we have here in the US...the only folks who are "OK" are the Big Company and Government policy people. All the rest are one illness away from a trip to Bankruptcy Court. Thank the Bush Administration for not allowing negotiation of drug prices, and the Obama Administration for the ACA and tax penalty. The lack of a 'government option' was clearly designed to make sure there wasn't competition or any reliable measure of the private industry practices. At a very minimum, there should be published price schedules at hospitals, a right to sue health insurers for poor claims practices or denial of vital services, and one single payer pool, not the cherry picking of the healthy. After all, if you limit coverage to folks who can work a 40 hour week, you've just cut off most of your expensive patients...and insurance companies have gotten away with this far too long.
Marathon runners get heart attacks, and folks who eat healthy get cancers too. Illness isn't always "your fault". You could cross the street today, look both ways, in a crosswalk and green light, and get seriously messed up by an uninsured and stolen car. just sayin...
do you actually live in the US ? this is a shit country to be poor in.
The high deductible cheap plans were banned because they excluded "pre-existing conditions". And offered no preventive care treatment for free. I knew people on those plans, $10K deductible. They were pretty young and willing to take the risk. I understand completely. But a goal of the ACA was to get everyone covered (even those with preexisting conditions) and to get people in for preventive care as that is shown to make the entire society healthier.