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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."

17 of 195 comments (clear)

  1. Glad I don't live in the US... by Anonymous Coward · · Score: 5, Informative

    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.

    1. Re:Glad I don't live in the US... by Stephan+Schulz · · Score: 3, Informative

      Socialized Heath Care is more efficient too. The waiting rooms double as morgues!

      Socialised health care is not perfect, but it typically has a much better outcome for the average patient - both per dollar and absolutely. The US is neck and neck with Cuba in health care effectiveness (see e.g. this Forbes article). It spends 17.9% of the GDP on health care - Cuba spends 10% And since GDP per person is around US$55000 for the US, US$6700 for Cuba, the Cuban system is about 15 times more efficient.

      --

      Stephan

    2. Re:Glad I don't live in the US... by dunkelfalke · · Score: 3, Interesting

      So you think every drug in existence was developed in the usa?

      --
      "It's such a fine line between stupid and clever" -- David St. Hubbins, Spinal Tap
  2. Re:Why not covered by insurance? by ColdWetDog · · Score: 5, Informative

    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!
  3. Re:Why not covered by insurance? by ColdWetDog · · Score: 4, Interesting

    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!
  4. Re:torn on this one. by ColdWetDog · · Score: 3, Insightful

    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!
  5. Sorry man this is America by thegarbz · · Score: 4, Funny

    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.

  6. Re:Why not covered by insurance? by sjames · · Score: 4, Insightful

    In America, we put the dollar sign before EVERYTHING else.

  7. America = dead without money by TractorBarry · · Score: 5, Informative

    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 !
  8. Re:Why not covered by insurance? by barc0001 · · Score: 5, Insightful

    > 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....

  9. Re:Why not covered by insurance? by Kjella · · Score: 3, Insightful

    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
  10. Re:Why not covered by insurance? by barc0001 · · Score: 4, Informative

    > 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.

  11. Two Years Ago, This Happened to Me by LoginOrSignup · · Score: 5, Interesting

    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.

  12. Re:Why not covered by insurance? by thegarbz · · Score: 3, Informative

    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.

  13. Re:Why not covered by insurance? by St.Creed · · Score: 4, Informative

    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)
  14. Re:That's what you get for being a fat slob. by speedlaw · · Score: 3, Insightful

    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...

  15. Re:In America by speedlaw · · Score: 3, Insightful

    do you actually live in the US ? this is a shit country to be poor in.