Ebola

The Upside of Ebola? Support for "Right-To-Try" Laws and Patient Power

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Pretend for a moment that you or a loved one is diagnosed with Ebola and the virus proceeds to a point where death is not simply a possibility but likely. Would you be happy simply to mark time until the inevitable takes hold? Or would you want as many options as possible, even knowing full well most will fail?

If we start having more conversations about the ways in which medical regulations need to change—and need to respect individual patient desires—we might be able to add an upside to Ebola's arrival in the United States.

My latest Daily Beast column argues that the arrival of Ebola in America should encourage "a conversation about the regulations surrounding the development of new drugs and the right of terminal patients to experiment with their own bodies."

Ebola in the United States may well accelerate adoption of so-called right-to-try laws. These radical laws allow terminally ill patients access to drugs, devices, and treatments that haven't yet been fully approved by the Federal Drug Administration and other medical authorities. The patients and their estates agree not to bring legal action against caregivers, pharmaceutical companies, and insurers.

You don't have to be a doctrinaire libertarian—though it helps—to see the value in letting people with nothing left to lose experiment on themselves. They may get a new lease on life. The rest of us get meaningful information that may speed up the development of the next great medical intervention.

Read the whole thing.

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  1. SendMoreAlaskans 7 hours ago
    Well Nick we know you never let an opportunity to remind everyone of your personal libertarian crusade pass by.

    But this heartfelt plea on behalf of Ebola sufferers is pretty cynical even for your standards.

    Why beat around the bush? Let’s just follow this to its logical conclusion and admit that the FDA is a federal agency and thus undesirable by definition.

    What we should be doing is throw all quality control out and allow anyone to volunteer for any clinical trials for experimental drugs. The free market can dictate at what price someone can sell himself as a guinea pig to pharma. And to hell with sophistry like a cure being potentially worse than the disease.

    1. I love when someone attempts a reductio ad absurdum and accidentally suggests a good idea.

    2. And to hell with sophistry like a cure being potentially worse than the disease.

      This guy has embraced sophistry of the highest order. He sees an argument about the absolute right of self-ownership, and shrieks about his disdain for free markets. I guess it’s just added irony that he accuses Nick of being cynical and added fallacy that the FDA is some sort of quality control mechanism.

      1. Look, just get in line, stop making trouble and wait your turn to suffer and die, OK?

        We must protect the system, our precious system, from dangerous interlopers preaching agency and self-determination.

    3. And to hell with sophistry like a cure being potentially worse than the disease.

      What, exactly, is worse than bleeding to death out of your eyes, ears, mouth, nose, dick and asshole?

      Oh, right… spending a minute with assholes like Daily Beast commenters.

      1. Snorting jabbenero peppers, short term anyway.

      2. Warty Hugeman and the Mysterious Bleeding Orifices

        1. You make new orifices of pleasure and terror.

          1. If it bleeds we can kill it.

            1. “If it bleeds, Warty can fuck it.”

          2. The doomcock is its own place, and in itself can make a vag of an ear, an ear of a vag.”

    4. KEEP YUR VIEWS OFF THEIR DYING BODIES!

  2. abulinix 16 hours ago
    Gummint? We don’t need no stinkin gummint. Certainly not to spend money on public health (what the heck is this word “public” anyway?) and other non-market-based solutions to Ebola. If demand for Ebola treatment was high enough, SUPPLY of Ebola treatment would be sure to catch up! So don’t tell me where I can go and can’t, and don’t confiscate my hard earned money to pay for research by lib scientists. Let the epidemic run its course!!! In due time the Invisible Hand will take care of all in the most ideal way possible Market based solutions, I tell ya.

    All hail the Invisible Hand, blessed be He.

    FlagShare

    1. Why hasn’t our ingenious government suspended all visas from east Africa for the time being?

      …at least until we understand why Ebola got past our protocols and infected one of our nurses.

    2. Here’s another question for our ingenious government:

      My understanding is that if you want to work with Ebola experimentally as a pharmaceutical company, biotech company, whatever, you have to do so inside one of three designated hospitals–because their facilities are designed for containment and the staff there has been trained specifically to handle that.

      My understanding, also, is that the guy who died of Ebola (and the nurse who’s tested positive) were not at any of those three facilities.

      Why wasn’t the patient transported to one of those three facilities?

      1. Why wasn’t the patient transported to one of those three facilities?

        And contaminate everything in between??!?!

        /end sarcasm

    3. Oh, if it wasn’t already there when you got this, go back and read the reply to this comment, wherein a moron takes this post at face value and attempts to lecture “abulinix” about TEH CORPRASHUNS!

      1. We saw what the unregulated “free market” brought down upon us when Wall Street and the banks were let loose in 2008 to rampage and pillage, nearly destroying the world economy. The fight never ends. We’ll use the government — which is all of us struggling against the corporations who control the lobbyists, lawyers and politicians in the statehouses and D.C. — to attempt to forestall the next Great Depression — another historical example of how your imaginary invisible hand is really just a velvet glove covering an iron fist.

        Warty Hugeman and the Brain Slug Invaders From Upsilon Andromedae 4

        1. Progressivism: Fighting objective reality until the bitter, ugly and painful end.

          1. But that one is especially cartoonish and absurd, even by the non-standards of Das Leftoids.

            Rampaging banks! Destroying the world economy! How great it is, that our beloved government is here to protect us from evil business!

    4. There is all kinds of flavor of retard, here is an example of the pants wetting variety:

      Omegadon 23 hours ago
      I thought maybe you were going to point out that the United States lawmakers cannot ignore our own borders anymore, which with the Ebola “outbreak” need to be fortified and defended more than ever. This is a nightmare for our fearless leader, who wants the opposite to happen.

      If you think about the unthinkable, like the fusion of terrorism and Ebola, it get scary in a hurry. Biohazards unleashed in the wrong place can cause levels of disruption and panic hitherto unknown in an otherwise civil society.

    5. There is all kinds of flavor of retard, here is an example of the pants wetting variety:

      Omegadon 23 hours ago
      I thought maybe you were going to point out that the United States lawmakers cannot ignore our own borders anymore, which with the Ebola “outbreak” need to be fortified and defended more than ever. This is a nightmare for our fearless leader, who wants the opposite to happen.

      If you think about the unthinkable, like the fusion of terrorism and Ebola, it get scary in a hurry. Biohazards unleashed in the wrong place can cause levels of disruption and panic hitherto unknown in an otherwise civil society.

      1. If you think about the unthinkable, like the fusion of terrorism and Ebola, it get scary in a hurry.

        It wouldn’t even have to be sophisticated. Think – a symptomatic suicide bomber with a vest designed to aerisolize the remains can infect a crapload more people, especially if it’s mistaken for a conventional attack. Set off in a crowded street, instant exposure of a crapton of people who will all disperse before the affirmative confirmation of disease can be ascertained.

        1. A conventional vest might work just as well, and delay the bioweapon determination even longer due to it looking like a traditional attack.

    6. There is all kinds of flavor of retard, here is an example of the pants wetting variety:

      Omegadon 23 hours ago
      I thought maybe you were going to point out that the United States lawmakers cannot ignore our own borders anymore, which with the Ebola “outbreak” need to be fortified and defended more than ever. This is a nightmare for our fearless leader, who wants the opposite to happen.

      If you think about the unthinkable, like the fusion of terrorism and Ebola, it get scary in a hurry. Biohazards unleashed in the wrong place can cause levels of disruption and panic hitherto unknown in an otherwise civil society.

      1. Or the squarely variety. I report you decide.

        1. *squirrelly

    7. Example #45,984, demonstrating the glory and righteousness of mob rule.

    8. I suppose it would be a waste of time to point out to daily beast readers that the kkkorpurashuns actually are trying(with some success) to develop ebola treatments while government can’t even contain the virus in an isolation unit in a hospital.

  3. My understanding is that they actually used experimental drugs on all the Ebola patients that have come to the U.S. Why not let patients do the same thing with other diseases?

    Also, as I recall…

    The CDC was telling us back in March that this Ebola outbreak was going to burn itself out in Africa.

    Then they were telling us we didn’t have to worry about them treating patients here because their protocols for containment were more than sufficient.

    Now they’re telling us that one of the nurses contracted Ebola despite those protocols…

    Is there a rational explanation for all of this that doesn’t include the observation that they either a) don’t know what they’re talking about or b) they’re lying to us?

    1. “Now they’re telling us that one of the nurses contracted Ebola despite those protocols…”

      No, they are telling us that there must have been a breach of protocol. There had to have been because someone was infected.

      See, the tenants of Soviet Socialism are so perfect that….no wait…that was Trofim Lysenko.

      1. It’s always a breach of protocols and procedures with these people…

      2. I bet the nurses followed them to the letter.

        I’ve worked in a hospital. I’ve seen how they handle biohazard waste. You know why they don’t flag patients that are HIV positive?

        Because they don’t want the nurses to put their guard down–they want them to treat every patient like they’re HIV positive.

        How careful would you be if you positively knew the person you were treating had Ebola?

        Why hasn’t Ebola burned itself out in East Africa like the CDC said it would?

        1. If you’ve worked in a hospital you’ve seen contact protocol in action; it’s not easy to keep up for a long period of time – how many slip ups with C-Diff are there in any given year? It doesn’t take much; a slip of the glove, etc…

          1. We’re talking about people who knew very well they were treating ebola patients. They had every incentive to follow the protocol to the best of their ability. If they failed, then it reflects a failure of the protocol. Any procedure that does not reflect the realities of human behavior is critically flawed.

        2. Duh because it’s a form of population control

    2. Earlier today, Doctors Without Borders admitted that 16 of its staff members have now been infected with Ebola and nine of them have already died.

      That’s a pretty significant number of “breaches of protocol”. It sounds like simply treating this disease is extraordinarily dangerous.

      1. It certainly is if you’re doing it without the benefit of full US quarantining ability – they’re working in Liberia, it’s not like they’re at a front line hospital

        1. They were briefed on protocol, yes? They knew they were treating ebola patients in an ebola-stricken area, yes? They knew ebola is a highly lethal disease that has no particular genetic susceptibilities, yes?

          Then they undoubtedly followed the protocol to the letter, because they did not want to die. Hence, the protocol is insufficient to prevent the transmission of ebola.

          1. Either that, or they’re basically volunteering to perform what amounts to a suicide mission at this point.

          2. Then they undoubtedly followed the protocol to the letter

            Not necessarily. A moments distraction could have been all it took. Humans make errors, some are more costly than others.

            1. This is a disease with a fatality rate of at least 50%. What further incentive can there be to follow the protocol and not get “distracted”? If “distraction” is this common, then it should be accounted for by the protocol.

              1. What further incentive can there be to follow the protocol and not get “distracted”?

                I can’t think of any. But who knows? Humans are strange creatures and react differently, even when placed in the same situations. As I said, mistakes happen, sometimes with tragic results.

            2. “Not necessarily. A moments distraction could have been all it took. Humans make errors, some are more costly than others.”

              But you’re talking about an unbelievably high transmission rate from patients to healthcare workers.

              How many workers contract HIV or hepatitis from the patients they care for?

              1 in a million? It’s very rare.

              It used to happen with needle sticks, but now they’ve changed the protocols so that nurses never have to recap needles anymore. (except surgical nurses to maintain a sterile field in the OR, but they’re supposed to do it one-handed).

              By way of comparison, how many healthcare workers are contracting Ebola from the patients they care for?

              It’s a hell of a lot more than one in a million! Everywhere these patients are, it seems, their careworkers get infected. It’s not 100%, but it’s really high.

      2. “That’s a pretty significant number of “breaches of protocol”. It sounds like simply treating this disease is extraordinarily dangerous.”

        Exactly.

        If the only vector for infection were contact with bodily fluids, then the protocols for treating someone with Ebola would be the same as they are for treating someone with HIV.

        …we’ve treated thousands and thousands of people with HIV over the decades, and the transmission of HIV to healthcare workers is extremely rare.

        Some pathogens are more virulent than others. If you touch a droplet of HIV contaminated blood, the chances of you contracting HIV is pretty low. If you touch the same amount of blood infected with some type of hepatitis virus, your chances of contracting hepatitis are much higher–because of the nature of those viruses.

        Still, the transmission of hepatitis from patients to healthcare workers is extremely rare because of the standard precautions we’ve put in place with all patients post HIV.

        1. The point is–those protocols don’t seem to be working. …and that suggests that the their vector model for this pathogen is wrong. Believe me, when they treat patients in Africa, they treat them all like they have HIV, as well. And the nurse that contracted it, she was–at least–as careful with this patients as she was with an HIV patient.

          I’m not buying their protocols. Given the transmission rate between patients and healthcare workers, it is unreasonable to assume there is nothing wrong with their protocols, and those protocols are based on their model of the disease vector.

    3. Your 1st question is based on faulty understanding. Patients are “let” to use experimental drugs. But it’s not the patients who are in charge. Somebody has to give them the drugs.

  4. NYC Reasonoids: MEET-UP ALERT!

    When: Thursday, October 16, 2014, 6:00PM
    Where: Rattle N Hum, 14 East 33rd Street
    http://www.rattlenhumbarnyc.com/home

  5. Or would you want as many options as possible, even knowing full well most will fail?

    People must be protected from their desperation. What if the treatment worked, but left the patient addicted to the cure? No, it’s better to just let them die a horrible painful death.

    1. as many options

      I read that as orphans. Which works:

      Or would you want as many orphans as possible, even knowing full well most will fail?

  6. And to hell with sophistry like a cure being potentially worse than the disease.

    And to hell with sophistry like risk/reward ratios. A headache powder with an 80% probability of fatal side effects is a different proposition than an experimental drug with a 15% probability of stopping a disease which is certain to kill you.

    1. A headache powder with an 80% probability of fatal side effects

      Not to undermine your point, but I would call that a lethal poison with a 20% chance of alleviating your headache.

      1. Oh no it has a 100% chance of ending the headache. The question is how much else gets ended too.

    2. Yeah, but the experimental drug with a 15% of stopping horrible death via disease might also have other side effects. We can’t risk the chance that these ebola patients’ lives are saved only to find out that they now have high blood pressure and ED.

      We need to make sure we understand the possible risks!

  7. How would one couch a “write to try” law, legally? The way the laws are currently written, you do have a right to take whatever you can obtain, unless it’s a controlled substance (and most drugs aren’t). The laws are restrictions on the marketing of products, not their consumption. So any amendment that purports to improve access to drugs must deal with the restrictions on purveyors of products, not consumers of them.

  8. Horrifying story about the CDC and, among other things, how Obama cronies took a half-billion dollar contract away from the one company that has a plausible cure in the pipeline.

    http://thefederalist.com/2014/…..w.facebook

    There are a few interesting things about the scandal Lurie was embroiled in years ago. You can?and should?read all about it in the Los Angeles Times’ excellent front-page expose from November 2011, headlined: “Cost, need questioned in $433-million smallpox drug deal: [Siga,] A company controlled by a longtime political donor gets a no-bid contract to supply an experimental remedy for a threat that may not exist.”

    Last month, Siga filed for bankruptcy after it was found liable for breaching a licensing contract. The drug it’s been trying to develop, which was projected to have limited utility, has not really panned out?yet the feds have continued to give valuable funds to the company even though the law would permit them to recoup some of their costs or to simply stop any further funding.

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