8 ms·

The word "treatment" in the headline made me think that this was some kind of formal study. But in reality this is literally some Florida crank lab selling a s

• kartan 10y ago
  > I remain stunned at the things that are heavily regulated in America vs not. Yes. This looks like a clear example where a regulation in place, and enforced, can save lives. > "The inaction by the FDA not only puts many patients at serious risk from unproven stem cell offerings, but also it undermines the agency's credibility," Knoepfler wrote in an email. This is part of the goal, I guess. To cripple regulatory agencies and then close them because they aren't effective is a widely used tactic. I hope there is a bright future for stem cell medicine, but regulations should be included in that future so it serves citizens and not just for-profit organisations.
  • kybernetyk 10y ago
    > but regulations should be included in that future so it serves citizens Regulations rarely serve citizens. They usually serve special interest groups.
    • cloudwalking 10y ago
      Citation needed. I can think of quite a few food, consumer, financial, medical, and environmental regulations that directly serve me and my fellow citizens.
    • nefitty 10y ago
      I don't consider my desire to live in a pollution-free environment to be a "special interest".
    • tekklloneer 10y ago
      You really don't seem to remember or have been alive before a lot of these regulations were put into effect. Ever look at a food nutrition label? That one was fought tooth and nail.
      • 0xfeba 10y ago
        Still being fought. Trans fats can be listed as 0g as long as it's <=0.5g. Sugar still has no % DV. Many other things the industry fights against.
        • chimeracoder 10y ago
          > Sugar still has no % DV. Because medically, that's a complicated question. The 25-40mg/day number that's often cited is for added sugar, not inclusive of all sugar in food. That's something that's a little trickier to evaluate for processed food[0], and it varies a lot more between people than other substances for which a recommended daily value is listed. [0] For example, fruit juice can have no sugar added, but still contain what are likely unhealthy levels of sugar depending on the serving size
          • deleted 10y ago
            [deleted]
          • 0xfeba 10y ago
            > Because medically, that's a complicated question. That fine, but with all the misdirection around sat/trans fats, and the current global obesity epidemic, I find it hard to believe the industry is solely concerned about reducing consumer confusion (IIRC, that's their stated reasoning) around a % DV for sugar. That is, we need some kind of yard stick for sugar, because what we have now is not sufficient for the problems our society has. It may not be % DV, but off the top of my head, say relative sugar ratio to other food products in the same category. But that can be gamed as well since there're only a handful of independent companies in the industry.
            • 10y ago
    • kbart 10y ago
      So why these "special interest groups" do everything they can to avoid regulations laws being passed?
    • BrailleHunting 10y ago
      "If all men were angels, no government would be necessary." -James Madison Hence effective, nuanced regulation is absolutely vital and libertarianism is an illusionary utopia like communism, with sensible and practical being somewhere in the middle.
      • vidarh 10y ago
        Libertarianism comes from the left, first used by an anarcho-communist. Between libertarianism and communism there's nothing.... Yes, I know what you mean, but this is a pet peeve of mine. Right-wing libertarianism differ from left-wing libertarianism in the view on property in particular. But neither see regulation as always unacceptable, but "just" want government actions to maximize liberty. This can lead to very different outcomes depending on how you think. E.g. food safety regulations will restrict the liberty of both seller and buyer. But at the same time if properly done they protect the buyer against potentially far worse damage to liberty - ultimately potentially costing the buyers life. The seller on the other hand at worst suffers a loss of revenue. There are further few cases where the buyer would knowingly and willingly buy unsafe food without intending to put others at the risk of harm. As such the ultimate consumer's liberty is likely to be at greater risk than the sellers liberty in the absence of regulation. Weighing the relative impact on liberty, some degree of food safety rules would seem to be the lesser evil. I'm not saying that's the only alternative or right intrpretation, but that libertarianism in general is more complicated than just stripping all rules. Stripping the wrong regulation can have a greater negative than positive impact on liberty
        • mikeash 10y ago
          Maybe instead of trying to write specific regulations for every little thing, we should just equalize this imbalance of damage. If a seller's misbehavior causes a buyer's death, then consider that as murder. If it's premeditated, execute the people responsible. OK, I don't really think this would be a good idea, but I do think it's worth at least thinking about how that would look and why we don't do it. Why is it that the alternative to regulation must always be "caveat emptor"? If a company deliberately sells a faulty product that kills a customer, they should be treated just like a common criminal who breaks into someone's house and shoots them. From this perspective, regulations are as much about protecting the sellers as it is about protecting the buyers.
    • lawless123 10y ago
      >Regulations rarely serve citizens. They usually serve special interest groups 3 blind women would disagree.
    • veidr 10y ago
      Your comment is being downvoted to hell, because it utterly deserves to be. It's not only wrong to the point of being asinine — it's also the precise propaganda concept that is most widely promoted by special interest groups in their campaigns to defeat or roll back regulations that serve citizens.
    • ionised 10y ago
      The same can be said about lack of regulation.
    • fennecfoxen 10y ago
      Dude. I mean, I broadly agree, but you can't just throw it out there on an article like this like it'll be productive in any way at all; you've got to actually make a case. Remember that even the regulators who most ostentatiously serve special interest groups usually have some excuse that they're trying to make things safer and better for people at large somehow or another: you should seek to pre-emptively overcome at least the basic entry-level apologetics for them, doubly so in a situation like this. Things that could make your case: - bring up the issue of regulatory capture (ideally with an example from the exact relevant bureaucracy) and complain that this is evidence that the bureaucracy is focused on the interest groups instead of on the people it claims to protect, with overreactions after the fact that do not actually serve to provide effective protection (chronically fighting yesterday's battle) - bring up the actual negative impact of certain regulations on people and demonstrate that they are worse than this particular failure (candidate topics: insanely slow FDA approval of new manufacturing of generic drugs leading to things like the EpiPen episode, "certificate of need" legislation leading to higher prices and reduced availability of medical services in the name of protecting incumbent hospital profits, etc) - look for other failures where medical regulatory frameworks have demonstrated that they are ineffective ways to protect people - perhaps opine that these people are going to be ruined now anyway and that a regulatory backlash is totally redundant, thwarting none of the bad guys and burdening good guys ... in short, try a post with, like, actual content sometime, it's more effective :b
• vog 10y ago
  > safety and effectiveness of this procedure is unknown, all three patients received injections in both eyes I hope this is not too cynical, but I guess they even got a discount on making their two eyes in one run. This really sounds like a "two for the price of one" mentality. More generally, this is one of the many examples where typical marked-oriented thinking utterly fails when non-financial risks are involved. You need either high regulation without loopholes like those described here, or you need to pipe everything through a mandatory public health care system which would simply refuse to pay for non-evident treatments. In most countries it is a combination of both.
  • Notre1 10y ago
    I doubt that insurance paid for this procedure, so I don't think the single payer conversation is relevant. I'm assuming that given a similar regulatory environment, with single payer health care, that someone could choose to pay for such a unregulated procedure out-of-pocket.
• napolux 10y ago
  WTF. This scares me a lot. How the f* would you make people inject something in your eyes that's not a medical approved treatment????
  • adrianN 10y ago
    It least these people thought that it was a medical treatment. There is also https://en.wikipedia.org/wiki/Scleral_tattooing https://en.wikipedia.org/wiki/Scleral_tattooing
    • lawless123 10y ago
      To be fair, as stupid as tattooing your eye is to me, those people seem well informed of just how stupid what they're doing is.
  • noselasd 10y ago
    By telling/convincing them that this will work/is medically approved etc. The next question is whether or not the doctors doing this are being jailed, and if not, how to best introduce legal changes so it will lead to jail time if someone tries something similar again in the future.
• ptero 10y ago
  As a personal data point: about 15 years ago a close relative of mine (in his 90s) was going blind (I think from MD, but not 100% sure) with no cure, at least at the time. He was fully self sufficient and an avid reader his whole life and knew that in 6 months his walks with grandkids, reading and in general life as he knew it would be over. He died of an acute infection (or virus) before he went blind, but I am sure that given an option with outcomes of death at 50% and keeping vision at 50% he would take it (I would, too). Regulating non-approved medical treatments out of existence might look appealing, but IMO we need to allow informed, rational people to choose unapproved treatments where no approved one exists. Much better to have full disclosure and informed consent (FDA would not approve a treatment with 50% death/health outcome, but some people would gladly take it). My 2c.
  • aleksei 10y ago
    How do you ascertain someone is informed and rational? Where's the line between unapproved treatment and snake oil? I get your point, but the specifics are way more nuanced and difficult to get right than you make them out to be, even without getting into the ethical considerations of unproven medicine that extend beyond the individuals.
  • djsumdog 10y ago
    But without formal studies, you can't get solid data on if treatments actually work. That's why the Japanese case stated is so different. Even if you allow this therapy for people over 90, who may feel they have nothing to lose, the data from it might not really be worth anything because you don't have the standard controls, placebos, etc. There needs to be several rounds of animals testing first, formal procedure and clear indications to the patients of the risks. Elderly people over 80 are in some ways ideal (less to lose; depending on how you measure life/quality of life) and could have treatment in only one eye, but are also less than ideal since their could be a higher rate of failure simply due to their age and the inability of their bodies to accept treatment. For something to be a treatment, it has to work consistently, with the same success rates and documented side-effects across a population. There is a reason those studies are slow and take time, because we try to be careful today when dealing with human life and not be Nazi/MKUltra scientists.
• wnevets 10y ago
  Look regulations are bad, let the free market sort it out. If all of their customers go blind, they won't make money! /sarcasm