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Gene Therapy Treatment Passed Clinical Trials, Priced at $1 Million

Discussion in 'Current Affairs' started by zenosia, Jan 6, 2017.

  1. zenosia

    zenosia Reach Heaven through Violence

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    Enough about politics, the future is now!

    Er, was. Has been. The drug was approved for sale almost five years ago, and the price was set in 2015. Whatever. Here's some links.

    ...

    https://www.bloomberg.com/news/arti...xpensive-medicine-faces-first-test-in-germany

    Glybera: The Drug That Costs $1 Million Per Treatment

    http://www.nature.com/nbt/journal/v33/n3/full/nbt0315-217.html (If you don't have an account, just use sci-hub)

    ...

    ANYWAY, Alipogene Tiparvovec is now being sold under the trade name Glybera, by UniQure. Its designed to treat Lipoprotein Lipase Deficiency, a congenital disease known to cause pancreatitis, and is currently being sold in Germany for the low, low price of 1,000,000 USD.

    The arguments for the insane fee include the rarity of LPLD, research costs, and the permanent, one-off usage that closer resembles a surgical operation than a pharmaceutical. Despite this arguments have spawned over the development of new pay-models for this infant branch of treatments, and it's expected that as more of these therapies are approved accommodations will be made for more consumers.

    There is also some concern as to its quantitave effectiveness, especially with an original sample size of 27 for testing, and reviews are being conducted, as started last June.

    I'm almost beyond caring about effectiveness at this point. That the EU Commision has agreed to its sale in the first place is a significant sign, and I'm on the edge of my seat for what's going to hit the shelves this year. Who knows, maybe we'll get designer babies by 2020.

    Thoughts?
     
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  2. DonBosco

    DonBosco Dread Lord of the Luddites

    That would be amazingly horrific and I dearly hope not.
     
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  3. zenosia

    zenosia Reach Heaven through Violence

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    I mean, designer babies of the 'free market eugenics' variety? Hell no. I was mostly joking about that one.

    But being able to retroactively cure diseases that were literally ingrained in someone's physiology is really just amazing. My personal expectation is that as we see more big names patenting these kinds of treatments we'll get enough ridiculously heavy regulation that designer babies will be postponed until some reasonable limitations are agreed upon.
     
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  4. Shy Guy

    Shy Guy

    Location:
    Here
    Hey, if Trump doesn't blow up the world, then we could conceivably be the generation that lives forever
    so long as we're in the top economic percentile.
     
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  5. A long time, that is, barring blunt trauma.
     
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  6. This will get cheaper over time, just like every other technology.

    EDIT: Also, apparently this disease only affects ~200 people across all of Europe, so they're having to recoup all their R&D costs with a very small number of sales.
     
    Last edited: Jan 7, 2017
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  7. Shy Guy

    Shy Guy

    Location:
    Here
    I don't doubt life extension would fall in price, if not by economic forces, then by governments or the mob demanding it; I just hope I'm not croaking when it does become available/affordable. Say whatever else about our governments or societies, but I'm not cynical enough to believe that they'd let such a miraculous thing be artificially gouged to the point that only the very rich live with greatly increased lifespans while the rest of us go without.
     
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  8. Volt Cruelerz

    Volt Cruelerz Software Engineer Hoosier in Florida

    Location:
    Florida
    First thought? Maybe this can shut up the crazies that think there's a magical cure for cancer that's being suppressed. Probably not, but a man can hope.

    Second thought? That price is insane!

    But then I read that there's only 200 people with it in Europe and that gave me pause. Drugs are expensive to develop, and a company's obligation is to its shareholders, so it is compelled to make up the losses, and for a single-use drug with such a tiny target population? Yeah, it makes sense. Provided it is as effective as it is supposed to be, I'm honestly "fine" with the price tag. That's not to say I like it. I hate that it's high, but I can see why it is and I can't see a way to bring it down without discouraging pharma companies from making similar cures in the future.

    As far as designer babies by 2020, probably not, unless some Chinese scientists go off the deep end in the next few years. I wouldn't be surprised if we start the gene drive that will ultimately eradicate malaria by then though; honestly, I'd hope we will. Designer babies aren't likely any time soon though because we don't have the level of precision control necessary for it yet. CRISPR just isn't safe enough to use on humans yet.
     
    Last edited: Jan 7, 2017
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  9. Yog

    Yog

    Maybe not 2020, but 2025 I would hope is a maybe.
     
  10. galahad

    galahad Seeker of Truths

    Whats wrong with designer babies if you implement it for whole population instead of rich only caste system. Raising the mean health and intelligence of your people is a good thing. And it pretty much represent the ultimate weapon againsy racism. Race means nothing when anyone can have the genetic template they want and all humans can be empirically made equal.
     
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  11. Avernus

    Avernus Abomination

    Yes, it's actually the nightmare scenario for racists in a lot of ways, despite how often genetic engineering gets equated with eugenics and so forth.

    It means that even if they were right and, for example black people really were less intelligent, you could just shrug and say "OK. Make them smarter." That's not what they want to hear.
     
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  12. Volt Cruelerz

    Volt Cruelerz Software Engineer Hoosier in Florida

    Location:
    Florida
    Hopefully. I'd gleefully welcome 2020 as the birthday for the first engineered human because of what it would mean for the future, but only if it's safe to use. CRISPR makes too many mistakes for me to trust using it on a human being. Using it to burn malaria from the face of existence, to purge that abomination from existence, to force the pathogen to join smallpox in the annals of history? Oh, how I would love that.

    Human genetic modification is fundamentally okay with me, but we need to make sure the side effects are controllable as the side effects here are... dramatic...

    As above, I, for one, am cool with access to designer babies being recognized as a basic human right and being made free, but the cost of giving it to everyone for free will be gargantuan, and once we start down the rabbit hole of "generation X improves the genetic quality of generation X+1," we will never stop. The only way to do this cheaply would be to run a gene drive on the human race itself, but that is, of course, terrifying for all sorts of reasons.

    Also, just because race means nothing doesn't mean we won't get comparable issues. "Oh, you're just a Homo sapiens v1.0; we don't hire your kind." As the potentially last generation to not be genetically modified, Gens Y and Z, will likely find themselves severely disadvantaged as they age because they're liable to be the last ones to not be modified. Maybe Z's children might only sometimes be modified, but their grandchildren, at least in the first world, will presumably be near universally genetically modified. Depending on how life expectancies shake out, this could push a lot of Gen Y and Z out of the job market (assuming we haven't all been pushed out by robots by then).
     
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  13. zenosia

    zenosia Reach Heaven through Violence

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    I think this kind of fear is pretty easily side-stepped with the existence of gene therapy itself. The driving motivation for gene therapy is genetic engineering for in vivo organisms, and while to a certain extent the more nebulous expressions of intelligence are difficult to alter, especially in maturated adults, we are already researching for aids to increase neuroplasticity.

    It seems a bit ridiculous to envision the amount of knowledge a technological advancement needed to isolate and enhance the genes associated with intelligence, and not have a simple, effective method to implement those changes beyond an embryonic stage.

    Even if we assume major changes neural architecture are impossible without damaging the mind, how much of what we consider 'intelligence' is simple transmission speed? Even if altering the structure of a brain is impossible, enabling faster neuronal firing is far simpler.
     
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  14. Avernus

    Avernus Abomination

    As far as the transhumanist issue goes, ultimately I expect that cybernetic enhancement, adult bioengineering and such will outpace "designer babies" anyway. Genetically engineering offspring has the problem of a decades-long lead time for its recipients to be fully functional adults; by nature it's decades out of date before it's actually effectively implemented.
     
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  15. Serafina

    Serafina Semper Legens Councillor

    The cost of this seems justifiable, or at least it seems that from a capitalist perspective, the price of this drug isn't a sheer money-grab.

    However, the price of this drug also comes with some issues:
    Should an insurance company pay 1 million for a one-off drug whose effect can not be guaranteed?
    The basic calculus is pretty simple: You take the cost of this cure against the cost that would occur if you left it uncured, and then factor in a good amount for quality-of-life (or lifespan) improvement that comes from being cured. If that adds up somehow, then yes, you ought to pay for it.

    But it's more complicated than this because of two factors: paying it all at once, and the uncertainty if it'll work.
    Insurance companies do not always pay for expensive prevention. They almost always should, since it's more cost-effective, but sadly this is not the case.
    And the concern about the latter is understandable.
    So we solve both of these issues with one solution: A payment plan.

    You don't pay the 1 million right now (or rather, your insurance doesn't). Instead, they pay a good chunk of it right away, and then continue to pay each year until the whole sum has been paid off.
    Now yes, that sounds uncomfortably like having to follow a payment plan just for being alive - because it is. Lots of people already have to do that, namely all those who do need medication to stay alive. Except running it over the insurance company makes that much less of an issue.
    And sure, there's potential issues with "what if you switch your insurance" or "what if you die of unrelated causes" and so on.

    But the actual benefit of this?
    It alleviates some of the financial risk - and more importantly, it does allow an easier option if it turns out the treatment didn't work after all. Doing it like this makes this much more similar to how more prolonged treatments work, financially. Normally, if a drug company produces a drug against a chronic incurable disease, they'll get paid over a long period of time - this way, it'd be the same here.


    Now this is only a desirable state of affairs if we're talking about a still-uncertain treatment. Once it clear that this works on everyone, it should be a simple matter of just paying the cost once for a certain benefit. Still, for the purpose of enabling companies to produce cures for rare diseases, it's an option.
     
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  16. Sexists as well, with their insistence on natural, biological differences between the sexes. If there really is a biological hindrance to true gender equality, it could then be corrected.
     
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  17. galahad

    galahad Seeker of Truths

    There is very little discussion and acknowledge of things like CRISPR among the neo-reactionary web from what I could find. Probably because the idea the very foundation of their ideology is going to become irrelevant within a few decades is an uncomfortable thought. The little I did find varies between denial (cant be done, is a jewish conspiracy,) and rejection (playing god, cant improve upon whiteness, old fashioned eugenics is better). There is a small subset that sees Homo Drakensis as the future however (take racist white people, make them better, rule over rest of humanity as serfs). Draka - Imperial Wiki

    Being able to alter sex down to genetic level would probably kill transphobia as we know it.
     
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  18. Not until people figure out how to either cause brain-cells to magically replenish, or alternatively figure out how to transfer our mind into mechanical devices.

    Even if you stop other parts of aging, there simply isn't any natural system that would replace brain-cells dying of age/hits to the head. At least by my memory.
     
  19. Baby blood.

    Blood from human teens rejuvenates body and brains of old mice

    More seriously though, if we have any meaningful ability to prevent or reverse aging in the rest of our corpus. Like joints and cardiovascular systmes. Than causing the brain to revert back to a more healthy replenishment level for brain cells shouldn't be very hard.
     
  20. Most human cells can create more of themselves naturally even as we get older, though. Brain cells don't.
     
  21. [​IMG]

    She was right all along! :o
     
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  22. Volt Cruelerz

    Volt Cruelerz Software Engineer Hoosier in Florida

    Location:
    Florida
    Not necessarily, and increasing neuroplasticity isn't liable to help all that much since structural changes would be very difficult to implement in an adult. Sure, you might be able to make some minor changes in an adult, but never to the same extent as a child. There's also the risk that the treatment causes some undesirable effect on the adult. If things go haywire in an engineered embryo, you just discard it, barring harsh abortion laws.

    Self-assembling nanotech is about the only thing that would make this work given how incredibly hesitant people are to undergo brain surgery.

    That study has been called into question, and that's not even getting into the fact that the experiment wasn't aimed at checking for the efficacy of vampirism at all. All they did was inject human plasma into rodents. They did not inject rodent plasma into rodents or the plasma of different aged human cohorts into mice. All the study appears to show is that human plasma can have something in it that rejuvenates rodents. Is this because the plasma came from teenagers? Is it because humans are larger longer-lived creatures so our blood is optimized for long-term survival? Is it something else? We don't know, because that's not what the experiment was about.

    What you should make of that study is not that vampirism could make people immortal, but rather one of the most effective ways at combatting aging might be adding something to the blood. It might be synthetic red blood cells, it might be something else, but since blood can be altered with relatively minimal invasion, this shows a direction we should research.

    Because they don't have to. Doesn't mean we don't get more of them over time though. Assuming we can't get more neurons because they themselves can't reproduce would be like assuming we can't get more red blood cells because they can't reproduce either.
     
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  23. There's not going to ever be some "miracle treatment" where people who have it live forever and people who don't... don't.


    There'll be a ton of expensive-but-not-insane treatments that when taken all together have that impact, but are a shit ton of discrete variables so that no one can really point to them only benefiting one group.
     
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  24. Well, if modern trends about technology getting cheaper and more effective apply to life extension, even extending your life a decade or two will be enough because you'll live long enough to afford the next big breakthrough in life extension.
     
  25. DonBosco

    DonBosco Dread Lord of the Luddites

    They don't and even if they did, there are major quality of life issues involved.
     
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