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Electronic Frontier Foundation Music

EFF Co-Founder Announces Benefit Concert to Pay His Medical Bills (twitter.com) 195

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."
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EFF Co-Founder Announces Benefit Concert to Pay His Medical Bills

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  • by Anonymous Coward on Saturday October 15, 2016 @12:54PM (#53081617)

    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.

    • For every dollar drug companies spend in research, development, and testing to meet FDA requirements, they spend $4 on marketing. That's why your drug costs are crazy, and why your national broadcasters are addicted to the money that comes from pimping some drug or other that is probably not much more effective (or even less effective) than the one you're already on.
      • by jedidiah ( 1196 )

        Drug companies spend about 60 BILLION per year on R&D.

        MY drug costs are crazy because I have a rare condition and I'm shocked to have ANY drugs developed for me and mine. The small company that "robs" my peeps puts half a BILLION back into R&D.

        There are several other companies lining up trying to make better drugs.

        Socialism certainly isn't doing this. Otherwise it would be Finland doing all the work.

        • Drug companies spend about 60 BILLION per year on R&D.

          MY drug costs are crazy because I have a rare condition and I'm shocked to have ANY drugs developed for me and mine. The small company that "robs" my peeps puts half a BILLION back into R&D.

          There are several other companies lining up trying to make better drugs.

          Socialism certainly isn't doing this. Otherwise it would be Finland doing all the work.

          If it's that rare, then it's covered by the orphan drugs program. The company got PAID to develop it via direct government subsidies, So what's that about socialism again? Because the government paying industry to develop drugs certainly sounds socialist to me.

        • by dunkelfalke ( 91624 ) on Saturday October 15, 2016 @04:28PM (#53082393)

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

        • Drug companies spend about 60 BILLION per year on R&D.

          They spend far more on marketing. And through lobbying, they have created a system that actually reduces drug quality year by year. The way it works is that the bar for bringing a derivative of an existing drug to market is much, much lower than bringing a new drug to market. You don't have to prove that it works even as well as the old drug; indeed, you don't have to make any proof of its efficacy at all. You only need to "show" in a FDA-approved clinical trial that it doesn't kill more people than the old

  • I wonder, though how likely it is that any regular person would be able to get anyone else to pay their bills.

    • by Anonymous Coward

      I wonder, though how likely it is that any regular person would be able to get anyone else to pay their bills.

      Survival of the richest/most popular!

    • See my post above. Although most people cannot motivate ex-Grateful Dead artists it seems to be something of a cottage industry at various Elk Clubs, American Legion Posts and social institutions of similar persuasions.

      And that's pretty sad.....

    • by jedidiah ( 1196 )

      People put up charity drives all the time. If you're particularly sympathetic, or you can draw from some tight knit ethnic group, you can attract a great deal of money.

      Some idiot lawyer from California that should have known better is probably not terribly sympathetic.

  • torn on this one. (Score:1, Insightful)

    by Anonymous Coward

    On one hand, this guy has done more for humanity than most, given he's a founder of the EFF, which is fighting the good fight around internet based human rights.

    On the other, most people don't get to have their own "benefit concert" when they rack up big medical bills. (Yeah, yeah, I'm sure the US healtlh care system will be hashed within an inch of its life in this thread).

    So... are some people more deserving than others, based on what they've accomplished? They're asked for voluntary contributions, and

    • by ColdWetDog ( 752185 ) on Saturday October 15, 2016 @01:35PM (#53081807) Homepage

      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.

      • by rbrander ( 73222 )

        I'm not aware of a fully socialist country, much less a fully socialist democracy. No, really, look it up. The wikipedia still has the clear, original definition of "socialism": the government owns every store, factory, and farm. Every business and employment of every kind is a government department. That's what Russia was "soviet socialist" republic. "Communism" is about living communally, eating communally, like the Spartans and the Amish.

        So Americans looking to denigrate promoted both words downward. Soc

    • The average person can live without the internet, and their quality of life would probably improve. Overall, it's caused more harm than good. See Internet Dysphoria [slashdot.org]
  • So he's exploiting his class and privilege to "benefit" whom? Himself. How noble of him. Is his continued delay of inevitable death at this late stage of his life so crucial to civilization that it warrants exploitation of funds from a massive benefit concert that could likely save hundreds or thousands of "less important" lives if used more ethically?

  • by thegarbz ( 1787294 ) on Saturday October 15, 2016 @01:55PM (#53081883)

    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.

    • I was going for -1 Sad , but got +5 Funny. Man we live in a fucked up world.

    • by fedos ( 150319 )
      What really makes this sad is that here's a guy who can't afford to pay his medical bills while being privileged and connected enough to be able to organize a benefit concert.
  • by TractorBarry ( 788340 ) on Saturday October 15, 2016 @02:12PM (#53081955) Homepage

    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.

    • by jedidiah ( 1196 )

      That would be the same utterly civilized NHS where expensive cancer drugs are denied to patients. The same NHS where doctors need to go on strike. The same NHS where you need to pay for your own diagnostic procedures. The same NHS where orthopedic surgeries are being rationed.

      The same NHS where I personally know someone who had to get a mortgage on his house to pay for treatment.

      Europe is great so long as you've never been there, have no friends or family there, or have never read their own press.

      • The same NHS where you need to pay for your own diagnostic procedures.

        Wow. You just replied with THAT in THIS article?

      • by radish ( 98371 )

        I've lived in both and used both medical systems. I'd take the NHS over United/Cigna/BCBS and all the other crooks over here any day. I've no idea where you get your info about the UK but it's wrong.

      • by Cederic ( 9623 )

        That would be the same utterly civilized NHS where expensive cancer drugs are denied to patients

        Fortunately the same US healthcare options are also available in the UK, so if you don't feel the NHS is meeting your needs, pay for private cover too.

      • by sjames ( 1099 )

        Dig deeper. Some of those expensive cancer drugs have a cure rate of zero and on average buy 3 months worth of agonizing semi-conscious death in exchange for literally everything you and your children have. Most doctors who have seen someone on them fill out a living will to make sure they'll never be put on them.

        They only exist because when the time comes, few who are personally involved can quite bring themselves to affirmatively let a loved one die even if that death is inevitable and actually the best o

    • Your American medical "system" is a fucking joke. It's like something out of the middle ages.

      Rather like a monarchy... ;)

      • by rkww ( 675767 )
        At least with a monarchy we don't have to elect a President every four years ;)
  • Nobody in the USA should have to worry about paying medical bills. We need a single-payer health care system [sparksremarks.com].

    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 b

    • by Shados ( 741919 )

      Having lived in a country with single payer health care, and now being a permanent US resident, I think it's a little oversimplifying.

      While the benefits of a single payer system is obvious to me, the US isn't a simple country. Some shit doesn't work here for the same (unfortunate) reasons a lot of things don't work in China or in African nations.

      All governments are corrupt to some degrees, but the US is really corrupt. All countries have some form of immigration related challenges, but among 1st world count

  • by LoginOrSignup ( 4689593 ) on Saturday October 15, 2016 @04:33PM (#53082417)
    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.
  • by speedlaw ( 878924 ) on Saturday October 15, 2016 @06:46PM (#53082853) Homepage
    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.

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