11 ms·

There seems to be a growing sentiment that FDA delenda est, but if we don't fix the underlying problem that led to this situation, it will just come back. As t

• riffraff 3y ago
  I remember at least three instances in my country where the authorities were forced to allow people to use experimental treatments due to media clamor. In all three instances, the result was that the treatments were snake oil and people died that might have lived otherwise. It's easy to say "people who have no other options should get access to experimental treatments" but the problem is that people who have other options want those too, because nobody wants to go through chemotherapy or whatever. Medical authorities have a shitty job.
  • nextos 3y ago
    Immunotherapies are still immature but far from snake oil at this stage. They routinely achieve miraculous remissions but also lead to many adverse events. For most late stage tumors, chemotherapy will only, at best, increase life expectancy a bit. In my opinion, the choice is obvious.
    • deleted 3y ago
      [deleted]
    • Retric 3y ago
      Imminotherapies very quickly kill a significant percentage of the people who try them. So it’s a complicated balancing act when someone is likely to die in say 1-2 years but also likely to survive another 6 months. For people who are likely to die very soon the case is more clear cut, but the people developing these treatments don’t have the resources or infrastructure to try and treat more than a tiny handful of people. Allowing people to pay for such treatments also opens the door for a huge range of bad actors which also costs lives. I am not saying the current system is great, just that there’s a lot more complexity than is obvious on the surface.
      • eilertokyo 3y ago
        Your comment makes something that happens quite rarely (1-5% based on agent, and not quickly) seem like it happens quite frequently.
        • Retric 3y ago
          Some of these trials had double digit percentage deaths within 30 days.
          • adamredwoods 3y ago
            Because the trials sometimes take on people with very little time left.
            • Retric 3y ago
              That’s the estimate for number of people killed by the treatment not the number of people who died in total. You should be careful not to exclude trials cancelled early when considering how risky trials are.
          • eilertokyo 3y ago
            Please provide some examples if you can! I could use the references
    • adamredwoods 3y ago
      Keytruda, and other PD-1 blockers, have good science behind it. Many oncologists believe this is the true path to defeating many cancers. While PD-1 blockers may cause the immune system to attack another part of a patient's body, we have quite a few ways to treat those autoimmune issues.
    • dakial1 3y ago
      I have a good friend who went through Immunotherapy on a Stage 4 lung cancer and had an impressive recovery (all the metastasis tumours disappeared in the scan pictures I've seen). Not cured of course, but has a much longer life expectancy. So I've seen at least one anecdotal evidence that they work.
  • nine_k 3y ago
    I'd say that people should be allowed to try whatever treatments they agree to have, in order to save their lives, and also in other cases. One cannot say with a straight face that a woman has sovereignty over her body and thus contraception and abortions should not be banned, and preclude that same woman from getting a treatment that can possibly save her life but has not been approved yet.
    • yladiz 3y ago
      C’mon, it’s extremely disingenuous to compare abortion and contraception with untested treatment.
      • toomuchtodo 3y ago
        Assisted suicide and euthanasia are better examples. If you have autonomy to die, you should have autonomy to die trying not to.
        • jfk13 3y ago
          Well, those are pretty controversial topics, so I'm not sure how much the analogy helps.
          • nine_k 3y ago
            It helps underline the hypocrisy of the current moral norms.
      • junofan 3y ago
        It’s unfair to call treatments untested. Medications are tested extensively. The FDA could work with sponsors to come up with a range of risk profiles and expand access.
        • ejstronge 3y ago
          > The FDA could work with sponsors to come up with a range of risk profiles and expand access. They indeed do this and have various avenues for treatments to be approved on expedited timelines.
  • dannyobrien 3y ago
    Maybe the fact that these are the ones you remember is an indication of the problem, rather than evidence that it is wrong.
  • valine 3y ago
    Just because a treatment doesn’t work doesn’t make it snake oil. Snake oil implies intent to deceive. Untested drugs can be based on a strong theoretical foundation and still not work. I expect the majority of experimental treatments won’t work. We should be trying regardless, not just for the sake of the people taking the treatment, but for the countless people in the future who can benefit from the same treatment when it does works. Also we should stop patronizing everyone. If someone understands the risk and their doctor agrees, just treat them.
    • jfk13 3y ago
      And how do we assess whether "someone understands the risk"? Often, I suspect nobody really "understands" the risk of some minimally-tested, experimental treatment.
      • MostlyStable 3y ago
        This is a fully generalized argument against personal autonomy.
        • jfk13 3y ago
          Yes, I suppose it could be taken that way. I wasn't intending to argue one way or the other, merely to point out that such an apparently simple condition ("if someone understands...") actually encompasses a huge amount of uncertainty, and so doesn't necessarily represent the "easy answer" that it might at first appear.
        • RandomLensman 3y ago
          Which why in a lot of instances in our lives we are not allowed full personal autonomy. We try to minimize collateral damage as well as self-damage to some extent.
  • eggy 3y ago
    Do you have the citations for the three instances where "people died that might have lived otherwise."? In this person's case, he will not live otherwise, so he has nothing to lose by trying an experimental therapy, although it appears to be too late anyway. Very sad.
  • netsharc 3y ago
    Couldn't this be solved by getting doctors' opinions? If docs says "This person's only chance of survival at the moment is chemotherapy, and it has a good chance of saving their life.", then, refuse the experimental treatment. But if the docs say "With our current medical knowledge, this person is destined to die within $TIMEFRAME.", then, if the patient consents to try anything, even if it kills them earlier, why not?
  • exmadscientist 3y ago
    To sibling commenters: immunotherapies aren't the only problem. There are a ton of truly evil companies out there pushing therapies that do not work, have never worked, and will never work, because they literally have no possible mechanism to ever do anything. This is a crime, but it's very very hard to prove. And these companies get very good at gaming the system, because that is their product. They are mechanisms to commit fraud, stealing all their patients' money and all their families' hope. This is a very bad thing. And, no, I am not making any of this up, but I dare not name names here. These companies also tend to be litigious! The impact of this is extremely severe. First, people die because they choose a truly worthless treatment that can never work, over bad ones that at least had a snowball's chance. Second, people lose faith in The System, because they think that the fraudulent treatments should have worked, so they lose faith in the good ones too. And third, R&D efforts can get redirected away: rare condition X already has a treatment, so let's put our efforts elsewhere (oh wait, no it doesn't, that was fraud, now there will never be a treatment). We will not untangle the experimental treatments issue until we confront this problem. Just do not think that it is all in "good faith" here, or even "best effort": there is real fraud going on, committed by monsters that know exactly what they are doing to take their profit.
    • civilitty 3y ago
      > First, people die because they choose a truly worthless treatment that can never work, over bad ones that at least had a snowball's chance. Like Steve Jobs. Fruit juice kills people.
      • inconceivable 3y ago
        clarification: fruit juice is basically pure fructose which cancer loves and your organs can't handle. actual fruit has fiber and you're unlikely to eat enough to cause harm.
        • civilitty 3y ago
          woosh Steve Jobs got into alternative medicine to treat his pancreatic cancer, including trying a fruitarian diet. Since he had a rare form that isn’t as fatal as pancreatic cancer usually is, there’s a chance he could have survived significantly longer if he had instead treated it with traditional, non-experimental medicine.
  • dionidium 3y ago
    > It's easy to say "people who have no other options should get access to experimental treatments" but the problem is that people who have other options want those too, because nobody wants to go through chemotherapy or whatever. I reserve for myself the right to try to save my own life, even if that means some people who can't handle that responsibility make things worse for themselves. I can't get from, "but other people might hurt themselves" to "therefore you simply have to die, sorry." No, I think we just have to be straightforward about this; I don't want anybody to purchase snake oil, but that possibility does not move me to eliminate options for myself or my family.
    • lucianbr 3y ago
      You say this now, but after your son, sister or mother dies after choosing snake oil, you will likely not say "I accept that they chose wrong and that's all there is to it". You will cry bloody murder and blame the system that didn't protect them from the snake oil salesmen, and demand that something be done. Well, I of course don't know what you personally would do. But some people would do this, and it turns out, actually a lot of the people in that situation would do that. And so something gets done. This is the same thing as crypto, people "reserving the right to take risks with their own money", and after the money is lost asking why the government didn't protect them. And the same as many other things. Humans suck at accepting the consequences of their own choices. Nobody has a fetish of taking your choice away from you. People ask for things to be this way, because people are just human.
      • MostlyStable 3y ago
        I agree with your description of reality. That doesn't mean that we have to accept it or say it's ok. It may be politically infeasible for the suggested policy (allowing people to choose treatments even if some people _will_ choose unwisely), or, if enacted, it may be impossible to keep it. But I will continue to advocate for it anyways. I believe in and advocate for _many_ policies that I have close to zero hope will ever be enacted.
        • lucianbr 3y ago
  • justinclift 3y ago
    > In all three instances, the result was that the treatments were snake oil and people died that might have lived otherwise. It seems like you're claiming that people who were given medical treatment after media attention weren't down to their last option(s)? If they were down to their last options, then they made their choice and it didn't work out.
  • mcherm 3y ago
    That is an interesting and relevant point, but it does not apply in case of Jake and others like him -- he has no alternative where he might live. In my opinion, the FDA ought to be more open to allowing experiments in cases where it is clear the patient is aware of the untested nature of the treatment. It would result in tragic cases like the three you describe. During COVID-19 it would have resulted in people taking Ivermectin which was ineffective and even harmful. But during COVID-19 it would also have resulted in determining 6 or more months earlier that the vaccines we made were safe and effective and the number of lives saved in that single instance would have greatly outnumbered the losses from 100 years of experiments.
  • emodendroket 3y ago
    Yes, and the FDA often does get pressured into approving treatments of dubious efficacy: https://arstechnica.com/science/2021/06/a-disgraceful-decision-researchers-blast-fda-for-approving-alzheimers-drug/ https://arstechnica.com/science/2021/06/a-disgraceful-decisi... It's easy to understand the logic of desperate patients who will try anything but it doesn't seem right to allow manufacturers to profit hand over fist selling treatments that may not even do anything, or worse, outright cause harm.
  • Waterluvian 3y ago
    I guess the FDA has a role in minimizing the market for snake oil.
  • moralestapia 3y ago
    >but the problem is that people who have other options want those too So, why can't one go through its own choice of treatment? Disregarding if its a good choice or a bad one.
• melling 3y ago
  This has been a common complaint for decades. We always want to try rush experimental drugs/procedures that “show promise”. How often do these drugs, etc turn out to effective? 25 years ago we wanted to rush gene therapy and that didn’t turn out well. Someone died. It probably set back gene therapy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC81135/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC81135/ I think the solution is to invest more into medical research now, then when we, or someone we know, eventually ends up with some horrible disease, (cancer(s), Alzheimer’s, Parkinson’s, etc) we’ll know that we at least we made significant effort, and gave everyone a better chance, rather than settle for a “Hail Mary” drug near the end.
  • EA-3167 3y ago
    People are, perhaps understandably, very eager to advance at a faster pace, always a faster pace. Nowhere is that more evident than in the case of people facing death regardless, but in addition to the issues you raised (early failures can lead to even worse delays) there are other ethical concerns. Terminally ill people are often understandably desperate, and I would be too in their position, no doubt about it. Their families are desperate, often their doctors are desperate. That doesn't mean that their remaining life doesn't have value though, or that cutting it weeks, months or years short isn't a problem. I think that's often lost on people, and in a more frightening way, people who are all-to-eager to use the terminally ill as ultimately disposable test subjects for unproven treatments. If it was JUST down to safety then I could see the point to an extent, but as you said efficacy is a big open question too. Of course if you're facing death then you may well want to roll the dice, but the question there too is how well you really understand the odds. The understandable implication in a lot of the discussions around this issue is that if only regulators were a bit faster, people like the author wouldn't die. The reality is grim though, most of these experimental drugs and therapies are not effective, regardless of whether or not they're safe.
    • causality0 3y ago
      We let people have assisted-suicide for reasons from homelessness to hearing loss, twenty thousand people a year. Why do we respect their self-ownership when they're trying to die but not when they're trying not to die? Why do we get to decide what is and isn't worth the risk?
• lr4444lr 3y ago
  The FDA could create a standard consent form for nonapproved treatment that patients and doctors would sign, which would indemnify the physician from legal repercussions, but they don't, and they bear full blame for that. The AMA would still have its own regulations about the limits of ethical experimentation, with the revocation of a medical license as punishment to serious offenders, and malpractice safeguards could still be there. State laws about gross medical negligence are also an option.
  • adrr 3y ago
    You can get get experimental drugs/treatments that aren’t approved by getting them under the clinical trial for that drug. The question is who pays for it? Cancer treatments are millions of dollars.
    • zaroth 3y ago
      Clinical trials are, I think always, free for the patient. The company developing the drug foots the bill.
      • junofan 3y ago
        That’s just not true.
        • DennisP 3y ago
          Not always, but it's usually true. > Patients generally do not have to pay extra out-of-pocket costs for treatments studied as part of a trial. Every trial is different, but the clinical trial’s sponsor usually pays for all research-related costs and any special testing. > Typically, the patient or his or her insurance company is asked to pay for any routine tests, treatments, or procedures that would be required as part of standard cancer treatment. Before you join a clinical trial, you will receive an informed consent document that spells out exactly what you’ll have to pay for and what you won’t. https://www.mskcc.org/cancer-care/clinical-trials/frequently-asked-questions https://www.mskcc.org/cancer-care/clinical-trials/frequently...
• chroma 3y ago
  For those who are curious, the term was coined on this blog post[1]: > The Copenhagen Interpretation of quantum mechanics says that you can have a particle spinning clockwise and counterclockwise at the same time – until you look at it, at which point it definitely becomes one or the other. The theory claims that observing reality fundamentally changes it. > The Copenhagen Interpretation of Ethics says that when you observe or interact with a problem in any way, you can be blamed for it. At the very least, you are to blame for not doing more. Even if you don’t make the problem worse, even if you make it slightly better, the ethical burden of the problem falls on you as soon as you observe it. In particular, if you interact with a problem and benefit from it, you are a complete monster. I don’t subscribe to this school of thought, but it seems pretty popular. The post provides real life examples of government programs, nonprofits, and individuals being criticized for helping in the “wrong” way. 1. https://web.archive.org/web/20210125231725/https://blog.jaibot.com/the-copenhagen-interpretation-of-ethics/ https://web.archive.org/web/20210125231725/https://blog.jaib...
  • unglaublich 3y ago
    So, you would flip the railroad switch to kill only 1 instead of 5 helpless people?
    • roflc0ptic 3y ago
      the math checks out
    • pjot 3y ago
      MIT recreated this thought experiment to research the “morality” in autonomous vehicles. https://www.moralmachine.net/ https://www.moralmachine.net/
      • bandyaboot 3y ago
        It interprets telling the vehicle to crash into a barrier rather than hit pedestrians as not placing as much value on protecting passengers. But really, this is just a recognition that the passengers are far more protected in a crash than the pedestrian are when getting hit by the car. Instead of a barrier, it should be a large cliff or something.
• yieldcrv 3y ago
  > Even if you want the experimental treatment, you cannot get it. fortunately, Baja California seems to have everything. Or specifically, a different drug approval strategy that is right in the middle of this. The FDA's main limitation is that it gives a one to one relationship in approvals. A substance is seemingly evaluated for a single narrow ailment. While evaluation process is a threshold of side effects as well as efficacy in treating that single narrow ailment. This process could be expanded to recognize that fulfilling the side effect issue could expand its use in other ways, more easily than whatever semantical distinction of easier the FDA uses now. There could be more possibilities for one to many approvals.
  • stbenjam 3y ago
    Off label prescriptions are legal and very common.
    • yieldcrv 3y ago
      huh thats exactly what google says. you’re right though, I think this is still limiting as it gets to currently obscure things, liability concerns for the physician if something goes wrong, or what insurance will cover. so its still hit or miss for the patient
• batch12 3y ago
  > Killing someone in an attempt to help is deeply unethical, while merely letting them die is not your fault. If a train is coming with someone pinned to the tracks, and they are begging you to hand them an axe so they can remove their own leg-- knowing they may die from blood loss, do you just do nothing?
  • y-curious 3y ago
    Moreover, if a terminal cancer patient wants to commit suicide, they can legally do so on several jurisdictions. Why then, can they not instead opt for this treatment as an alternative to suicide?
• aantix 3y ago
  There's this overabundance of the need for safety that's overcome society. It's as if we can't assess tradeoffs anymore. You see it with the lack of children playing outside - even though random kidnappings are almost a nil risk and that they're more likely to get by a car. Defective toys. Defective carseats. Millions get recalled for a failed few. You saw it with masks. You see it with speech, "words are violence". Everyone wanting the illusion of feeling completely safe.
  • vore 3y ago
    Uhh, given recalling defective toys or car seats is a pretty straightforward way to prevent further injury, isn’t that a pretty good trade off over knowingly potentially causing more injury just to save money? How would you feel if your child was injured by a car seat that had a defect the manufacturer completely knew about but refused to recall for the sake of saving money?
  • sleight42 3y ago
    You had me to a point. And then you began the usual conservative dog whistles. "Words are violence"? If you were dox'd, would that be violence? Or your life threatened? Or those you love? Or just people who look or love like you? Where is the line? Wherever you personally believe it should be? No.
• duxup 3y ago
  One issue is, who pays for it? Experimental treatments often are very expensive, I believe require a lot of study of the patient and so on ... It's not like a magical pill(s) you take an go home and live or don't and everyone says "well he consented so he took his chances". The entire process of experimental treatments is hugely expensive.
• lettergram 3y ago
  I think what really drives me crazy is that the FDA approval can limit me taking something. Put simply, If you believe “my body, my choice” then the current regulatory system is pretty messed up. To be clear, I’m fine with the FDA existing as a labeling body. Sure label something FDA approved. But don’t limit what we can take because it’s not approved. Otherwise, you end up with cases like this and many others, where an industry can easily be regulatory captured and ensure competitors are slow or unable to enter the market.
• agumonkey 3y ago
  It's a high worth debate, maybe there's a ethics curve.. for most cases you have the normal "don't do harm" but for life threatening you need another board to remove some stops without letting the scams proliferate.
  • theptip 3y ago
    "First do no harm" sounds good on paper, but it fails the trolley problem. It leads you to harmful beliefs like "we should not use the AZ Covid vaccine to save thousands of lives because it might cause one person to die of blood clots". The problem is that in the real world, it's extremely rarely the case that you can make an intervention that only has benefits, and doesn't have costs, so honestly applying "do no harm" is paralyzing. The medical ethics field understands this, but often the administrators/regulators are way too conservative. A better model that generalizes without special-casing is "weigh costs and benefits, and be conservative but bounded about unknown risks before making an intervention". In this case the potential downsides are 1) the patient dies which is irrelevant because they are almost certain to die anyway (and they made the informed decision to take this risk), and 2) some reputational damage to the FDA and medical practice if it's seen to be "preying on patients with no other options". I think 2) is being weighted way higher than it should. The problem with this model is it requires an understanding of statistics to determine what is ethical and just, and many doctors don't even know how to properly reason about false positives/negatives, let alone the lay public. Yet members of the public aren't willing to forgo their outrage on a subject that they cannot actually conceptualize. In some sense we are getting the regulators we deserve, not the ones we need; the FDA is probably rationally and correctly evaluating the political risks, media attention, and public backlash around allowing this sort of case.
    • agumonkey 3y ago
      Thanks, very interesting.. i dont know if it's worth setting up a group to raise statistical understanding or just wait for society to suffer enough to finally learn.
• stared 3y ago
  I call it Pontius Pilate's Ethics. It is (a very rational) approach for administrative workers, who get little credit for getting things better, but are at risk when they can be taken accountable for something terrible. That way, for example, in Germany, there was a halt on the Astra-Zeneca vaccine after a few cases of thrombosis per million. For comparison, it is one in six for COVID. The halt, most likely, caused many deaths. Yet, these deaths "have happened". If there were a death because an administrative organ didn't take action - the organ would be considered responsible. For the matter, Pontius Pilate was an administrative worker. And his incentives were aligned accordingly. In the language of the Trolley Problem, it is doing nothing (no matter how many are there on the tracks) or (even better) finding a way to pass the lever to someone else.
• Kamq 3y ago
  I still think they need another category than what they have now. My understanding of the current categories of drugs are you have "banned" and "has this specific therapeutic effect that costs billions of dollars to prove". A category of "this doesn't kill you" in the middle would probably alleviate most of this. Insurance only has to pay for things with proven therapeutic effects, but you can shield people from poison and get a lot more data way cheaper by having his middle category.
  • abecedarius 3y ago
    The requirement to test for efficacy and not just safety was only added in response to Thalidomide (which disaster had nothing to do with testing for efficacy). So what you're asking for is very not radical.
    • Kamq 3y ago
      > So what you're asking for is very not radical. Shame. Radical seems to be all the rage these days. Maybe I can brand it as radically conventional.
• haldujai 3y ago
  > Even if you want the experimental treatment, you cannot get it. Says who? In terminal truly no-option diseases (e.g. glioblastoma multiforme) it’s pretty easy to get access to experimental therapies on compassionate grounds. The challenge in this particular case brings us to: > Killing someone in an attempt to help is deeply unethical, while merely letting them die is not your fault. This is a false dichotomy. What’s unethical is offering experimental therapy with ?? effect when there are evidence based palliative treatments (e.g. conventional chemotherapy) with proven overall survival benefit. In cases where an experimental therapy has at least some limited evidence (i.e. suggestion it might work) it’s quickly approved and pushed into clinical pipelines, osimertinib/Tagrisso for lung cancer is a recent example of such a treatment. No one is advocating or suggesting we just let people die.
  • tux3 3y ago
    >In cases where an experimental therapy has at least some limited evidence (i.e. suggestion it might work) it’s quickly approved and pushed into clinical pipelines, osimertinib/Tagrisso for lung cancer is a recent example of such a treatment. I think that's the main point of disagreement. There are some encouraging cases where the process works well, and it's fair to point to osimertinib as an example. But there is a good case to be made (although various blog posts likely state it better than I could in a comment) that the current process introduces enough delay that the opportunity cost is higher than the risk. Most drugs fail. But getting the drugs that do work to patients even a year earlier may be a much larger benefit than the cost of giving people with serious diseases broader choices, in addition to the current best known standard. No one is advocating we just let people die, but there's an argument about the cost of delaying therapies and the cost of giving people choices that warrants careful consideration. While proven therapies are good and snake-oil is bad, improving standard of care for everyone historically saves many more lives than sticking with what we know for a longer period of time.
    • haldujai 3y ago
      > Most drugs fail. But getting the drugs that do work to patients even a year earlier may be a much larger benefit than the cost of giving people with serious diseases broader choices, in addition to the current best known standard. This is contradictory. Most drugs fail, how do we identify the efficacious ones other than through trials? Depending on the anticipated efficacy from early trials as compared to existing ones it will get fast-tracked before the phase II is completed. Where is the evidence that we’re delaying efficacious therapies where there is no good alternative? I sound like a broken record right now but this blog post is suggesting we jump to experimental therapies (which would be off label for the author as he does not meet inclusion criteria) before we even have phase I data let alone efficacy, when good validated treatment options exists.
• grammers 3y ago
  > Even if you want the experimental treatment, you cannot get it. Killing someone in an attempt to help is deeply unethical, while merely letting them die is not your fault. This is sometimes also known as the Copenhagen interpretation of Ethics. Most people (myself included) would not agree to that. Experimental treatment should be made possible - at least if there have been promising results with previous studies (animals, small trials etc.). There must be a safeguard, however, to make it impossible to sell false hope to dying people - because they will pay for everything, even if it does more harm than good.
• thrashh 3y ago
  Is there really a growing sentiment? If you have a system without problems, I’d be more worried. Edge cases like OP’s can’t be solved by any system. All systems have problems with things falling through the cracks. That’s why lobbying exists. So people like OP can bring attention to a specific problem and lobby for it. Taking about changing the system is missing the point.
• WalterBright 3y ago
  Sam Peltzman goes into this and the statistics in his book Regulation of Pharmaceutical Innovation: https://www.amazon.com/Regulation-Pharmaceutical-Innovation-Amendments-Evaluative/dp/0844731285/ https://www.amazon.com/Regulation-Pharmaceutical-Innovation-...
• npsomaratna 3y ago
  Going on a tangent here: there's a reason medicine is heavily regulated—because of the lessons we've learned the hard way. The same reason law is also heavily regulated. Some of these lessons have become obscured by time, unfortunately. Other lessons may not be fully applicable to the modern state of the field. (I say this as a qualified doctor and lawyer with some appreciation of the history of both fields.) Are the current regulation regimes perfect? No. Would we be better off without it? I doubt it. Should we try to strike a balance between regulation and innovation? Yes—but doing so is devilishly tricky. No matter what you do, someone somewhere will be unhappy.
• deleted 3y ago
  [deleted]
• atmosx 3y ago
  > Even if you want the experimental treatment, you cannot get it. Killing someone in an attempt to help is deeply unethical, while merely letting them die is not your fault. This is sometimes also known as the Copenhagen interpretation of Ethics. Interesting. Thanks for sharing the "Copenhagen interpretation of Ethics". I've thought many times about this problem, didn't know it had a name. Comes to mind Dante Alighieri: "The hottest places in Hell are reserved for those who, in a period of moral crisis, maintain their neutrality."
• alpineidyll3 3y ago
  Imo the whole US medical complex needs competition from a small but sophisticated libertarian state without any of the regulations that formed the present system, and I think it will happen. The market demands it, and the world would be better off with some competition. Most likely it will begin with some small nation that sells anti-aging therapies. There are companies from which you can order bespoke mRNAs. Lead times vary but are in the weeks. Many are abroad. The other components of mRNA vaccines can be assembled by someone with 2 years of biochemical Ph.D. experience. There are no laws against a person assembling and injecting themselves with anything. I have extra sympathy for the writer of this article, since mRNA vaccines (even if they were a random sequence) are relatively lower risk than many other sorts cancer interventions which are FDA approved. I happen to be an ex-professor, who is a director at a drug company. I know that if I were the unfortunate author of this article, whose heart is in the right place. I would probably be injecting myself with my own janky version of whatever offered hope. Whether that would actually change my prognosis? Probably not. I can say though that I _would_ and I believe others are entitled to positive freedoms I'd afford myself.
• msteffen 3y ago
  I think it could be ethical to let people try experimental treatments in the context of a phase 1 clinical trial, ensuring that something is learned from the attempt. However, I have also heard that an issue with that constraint is that connecting patients to clinical trials is a huge logistical problem that has not been well-solved. It actually seems like the kind of problem that could be a good fit for tech: have a registry of clinical trials, make sure it’s widely known and consistently used. I don’t know much about the problem, though, so I don’t know if or whether that’s unrealistic.