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A great example of why to support "Right to Try" laws. Every terminal patient could choose to contribute to our understanding of treatment while also possibly i
by Empact 3y ago
A great example of why to support "Right to Try" laws. Every terminal patient could choose to contribute to our understanding of treatment while also possibly improving their outcome. Through self-experimentation we could dramatically increase the pace of progress.
https://en.wikipedia.org/wiki/Right-to-try_law https://en.wikipedia.org/wiki/Right-to-try_law
- zdragnar 3y agoPeople with nothing to lose make fantastic targets for snake oil fraud. Principally, I agree with right to try, but I'm not sure what appropriate safeguards would look like.
- sneak 3y agoWhy are safeguards necessary? They're going to die anyway, letting them try literal snake oil isn't hurting anything. Let people make decisions for their own bodies.
- hotpotamus 3y ago[flagged]
- avery17 3y agoRequire the treatment be free for the patient. Problem solved.
- RandomLensman 3y agoWho will then pay? Doctors and hospitals eating all the costs doesn't seem likeky. It is not just the drug, but administering it, treating side effects, monitoring etc.
- danielmarkbruce 3y agoFor experimental treatments, it's very likely. It happens today in many clinical trials.
- RandomLensman 3y agoYes, as part of trials but for self-selected medication by patients - not sure. The funding sources for trials wouldn't necessarily just extend there.
- mortureb 3y agoThe organization giving the experimental drugs with the view that it will pay for itself in relevant research and treatments that come from the testing.
- RandomLensman 3y agoBut these wouldn't be trials in a useful sense if patients can self-select. The economics might not pan out unless you get to gatekeeping similar to current trials. And that assumes it would be all bona-fide substance providers.
- mortureb 3y agoIt could sure speed up a lot of the preclinical work to get to trials. I’m sure the company would love to not have to extrapolate their success probabilities based on mouse studies leading to extensive expensive trials that might not work out in the end.
- RandomLensman 3y agoDoubt it as people would make very uninformed choices, thereby producing mostly worthless data.
- janpieterz 3y agoFair, but there’s already a lot of medical related alternative treatments and activities that cause people to give up on more established practices and causes real harm. Currently the laws allow for the government to stop a lot of that. I don’t like it, but don’t know a solution that would work, people are extremely vulnerable in these situations.
- influx 3y agoTheir body, their choice. Steve Jobs probably killed himself by his medical choices but that’s what he wanted to do. Should we have strapped him in and forced him to get conventional medicine?
- magicalist 3y ago> Steve Jobs probably killed himself by his medical choices but that’s what he wanted to do. Should we have strapped him in and forced him to get conventional medicine? No, but we could have regulated transparency of "nontraditional medicine" and any fraudulent claims the people he was listening to were making.
- sneak 3y agoWalgreens sells homeopathic products on the shelf right next to real medicine. The NHS and German public health systems pay public money for homeopathic fake remedies. (To their credit the NHS has reduced the practice.)
- astrange 3y agoThis can be effective; a lot of medicines have experimental evidence saying they don't work, because they aren't better than placebo, but the reason for this is that the placebo works too.
- magicalist 3y agoOr they can kill your baby: https://arstechnica.com/science/2017/01/fda-confirms-toxicity-of-homeopathic-baby-products-maker-refuses-to-recall/ https://arstechnica.com/science/2017/01/fda-confirms-toxicit...
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- KaiserPro 3y agoI'm going to take this as a naive question and answer it with an example. Andrew Wakefield et al published a paper based on a small number of participants. they effectively preyed upon desperate parents to assert that MMR caused autism. (https://pubmed.ncbi.nlm.nih.gov/9500320/ https://pubmed.ncbi.nlm.nih.gov/9500320/) When people are desperate, its very easy to get them to do stuff thats very bad for them. The problem is that in some cases that "very bad" thing might actually be quite good. For example adding chlorine to water, on the face of it, is a fucking stupid idea. However along with proper sewage/sanitation, its responsible for most of the extended lifespan we enjoy in the west. It is a grey area between doing good, through taking informed risks, and using shortcuts that require desperate people to take extra ordinary risks. For example the reason why that vaccine was a massive risk is because the immune response could have just attacked the brain tissue as well as the tumour. And as it is a learned immune response, its super hard to stop it.
- sneak 3y agoWe are discussing specifically in the context of people who are less than a year from death anyway. Risks are irrelevant at that point if the person in question wants to try them. All of your examples seem to be irrelevant in that context.
- KaiserPro 3y agowe were talking about desperation and people taking advantage of that desperation. Just because you are terminal doesn't mean that people asking you to risk your life are anymore trustworthy.
- tim333 3y agoWakefield wasn't offering a treatment. He was selling a test kit that may have allowed people to launch lawsuit that they were harmed by vaccines. That's a different category of thing really.
- fzeroracer 3y agoWell, because often said snake oil can be quite toxic to your body and result in a lot of needless suffering. To be honest, most people know that if 'right to try' became a thing it would need to be followed up with 'you waive all rights to a lawsuit' because the moment an experimental treatment resulted in an extremely painful and accelerated death suddenly all of the people being advocates for right to try would sue them out of business. In this scenario, it's a cancer expert well aware that these treatments could possibly result in the above and is willing to do so anyways.
- Johnny555 3y agoWhy are safeguards necessary? They're going to die anyway, letting them try literal snake oil isn't hurting anything. Unless they were so enamored with the snake oil treatment that they ignored a legitimate treatment that have been effective.
- deleted 3y ago[deleted]
- flir 3y agoIf there's a legitimate effective treatment available, they're no longer terminal cases, are they? I suppose you could hypothesize someone refusing treatment until its too late then trying the snake oil...
- Johnny555 3y agoThis article is about a doctor with incurable cancer who was able to find a experimental treatment that so far seems to be helping. If instead he had been focusing on magic magnetic bracelets with no hope of helping, he may have not have tried this science based treatment.
- flir 3y agoI've thought about this for a couple of days because I thought it deserved serious attention, and I see your point, but a terminally ill patient choosing "the wrong one" between two possible treatment paths when neither of them is likely to work seems like such a corner case that I don't think it should block, or even modify, "right to try" laws. (And on further thought, magnetic bracelets aren't currently banned, so it seems like a bit of a straw man. I can't think of a woo treatment that could potentially be unlocked by a right-to-try law. I think they're all already available - Steve Jobs' certainly was, to take one famous example).
- pc86 3y agoBut it is enriching snake oil salesman, which lets them spend more money to convince people who aren't dying to spend money on their bullshit. Look at the bigger picture - it doesn't matter if it's just this person doing whatever they want with their body if it's a net negative for society as a whole. Society shouldn't accept any externality just because someone thinks cuckoo fraud "science" will work when it won't.
- NoMoreNicksLeft 3y ago> People with nothing to lose make fantastic targets for snake oil fraud. How much of that is because there's nothing else offered to them, other than snake oil and "have fun dying soon"? If their entire world is full of hucksters and con men, how can it possibly make things worse to open it up to legitimate research?
- tomsto 3y agoAgree. My mother had a very serious form of cancer (she’s luckily responded well to treatment) but she was overwhelmed by con men promising hope. Adding legitimate research makes this mix less toxic, not more
- cobbzilla 3y agoLet’s trade: I’ll take your aversion to snake oil salesmen, and you can have my cancer. Deal?
- melling 3y agoHow about we simply fund more real medical research so we can cure all those diseases that you might eventually get?
- ogogmad 3y agoHow does throwing more money at the problem help? How you spend it matters. Otherwise you're just setting it on fire.
- melling 3y agoNo one said “throw money at it mindlessly“. I said “fund more real medical research” I’m a little busy to explain it for the 100th time. Can you do a little research instead of putting words in my mouth? There was a time when scientists thought HIV would never be curable. https://abcnews.go.com/amp/Health/5th-person-confirmed-cured-hiv/story?id=97323361 https://abcnews.go.com/amp/Health/5th-person-confirmed-cured...
- DoesntMatter22 3y agoI find it strange that people advocate that people who are facing serious disease are not allowed to try experimental therapies. How does it hurt?
- bsder 3y agoHCQ? Ivermectin? Shall I go on? I have no problem with Right to Try. But it needs to have rules. Pre-registration. No charge or payments to anybody (doctor or patients). Forced publication of even negative results. etc. And, guess what, once you add the safeguards, that looks an awful lot like what we have right now.
- deleted 3y ago[deleted]
- colordrops 3y agoYou can get rid of "with nothing to lose" and your statement would still be accurate. Sure, do the best you can to protect people, but give them the agency to make their own choices.
- elzbardico 3y agoAn important societal consideration, but for those patients we need to remember that at the end of the day, they still have nothing to loose. Let's improve law enforcement and punishment for Snake Oil sellers and presume good faith in all other instances.
- ballenf 3y ago- Registration of alternative treatments with contact info (registered business address, etc.). Prevent fly-by-night hucksters from hiding in the dark. - Require disclosure of ingredients - Require disclosure of tests for contaminants - Require disclosure of adverse advents - Have a standardized form for all of the above. Kind of a "truth-in-lending" document but for alternative treatments. - Allow licensed doctors more freedom to administer alternative treatments without fear of license loss, so long as patient consent is received. This could be allow weeding out of some of the actual snake oil, but would add cost.
- zaptrem 3y agoI’d suggest adding: - Cannot charge patient for treatment. That way nobody can actually sell snake oil.
- hef19898 3y agoAnd apply medical trial standards. And everyone benefits, evem treatment isn't successful there are research results to work with.
- finite_depth 3y ago[dead]
- tim333 3y agoNot charging would prevent treatments like the one in this article which would presumably be expensive. I think better that a doctor has to sign off a bit of paper saying they feel the treatment is reasonable. They'd be reluctant to do that for snake oil.
- david-gpu 3y ago> Not charging would prevent treatments like the one in this article Charging patients opens the door to any unscrupulous doctor to profit from desperate people. Not charging patients closes the door to some potential legitimate treatments until e.g. a university funds some research to try them out. I know which one of the two worlds I would rather live in.
- DennisP 3y agoEverybody's terrified of the snake oil days, and almost nobody considers the way things were several decades ago, when cancer researchers were allowed to try things on patients without government approval, and we made much faster progress than we did after the FDA clamped down. For details, see the book The Death of Cancer by Vincent DeVita, director of the Yale Cancer Center and former director of the National Cancer Institute.
- magicalist 3y agoFor context, though, this was in the early 1960s when basically everything was low hanging fruit, so let's not assume the only variable at work is how much the FDA was clamping down. https://scienceblogs.com/insolence/2015/12/18/vincent-devita-we-need-more-mavericks-orac-not-so-much https://scienceblogs.com/insolence/2015/12/18/vincent-devita... is a good take on the work (remember when people used to blog?), and includes some good examples in the same stream of cancer treatment history where it's clearer that cancer researchers trying things on patients without government approval is not clearly necessary and certainly not sufficient for advancing the state of clinical practice. Super interesting history.
- DennisP 3y agoThe fruit hung lower back then but now we have taller ladders. We've learned a lot since the 1960s. That blog entry is interesting but it's based on an article Malcom Gladwell wrote about DeVita's book; the author says he hadn't read the book himself. It does make some good points. I feel there ought to be a middle ground, where physicians are professionally expected to base decisions on good science (rather than "our patients would vomit on the way home if we gave them the effective dose"), but also we don't have government officials prohibiting terminal patients from getting treatments that oncologists think could help them.
- thegrizzlyking 3y agoMany forms of snake oil(herbal supplements etc) is already allowed. Real medicine is what is being denied.
- nazka 3y agoI guess by over regulating it on both sides. Companies shouldn’t be able to use weird methods and ethics with these laws. And we can have the right to try but we will have to go through a lot of process to really make it happen. Not just sign here and we are done. Bureaucracy “nightmare” can be a good filter here for once.
- flir 3y agoGet at least n medical professionals to sign off on it?
- dublinben 3y agoThere is a long and well-documented history of self-experimentation in medical science.[0] [0] https://en.wikipedia.org/wiki/Self-experimentation_in_medicine https://en.wikipedia.org/wiki/Self-experimentation_in_medici...
- geff82 3y agoThe reason I got to know my grandmother and that she lived until I was 26 is that in the 70s she took part in such a trial when she was terminally ill.
- AlbertCory 3y agoI do sympathize. However, my old nextdoor neighbor had cancer, and he lectured me on how homeopathic medicines could get rid of all the "toxins" in our bodies. Naturally, he's dead now. I think the problem is Scale. These experimental treatments are only available in small quantities. There are many, many people dying of cancer. Are they supposed to open factories for drugs that aren't even developed yet?
- junon 3y agoHomeopathy needs to be banned. It's pseudoscience at best, a cult at worst.
- AlbertCory 3y agoTrue. I also know someone who went down to Mexico for treatment, unfortunately.
- pnut 3y agoPure Mexican water, what could possibly go wrong....
- LorenPechtel 3y agoI'd like to see a limited version that weeds out anything discredited or without a reasonable basis to think it will work.
- sharkweek 3y agoA friend of mine was diagnosed as terminal in his mid 20s (he had a giant mole underneath one of his fingernails that he never got checked out and it was later discovered to be aggressive melanoma that spread all over the place before they were able to amputate the finger). He was given 12-18 months, so was able to get into a string of experimental treatments. He's the first patient in the world to have tried a few different treatments, and... the best part, he's still alive today turning 40 next year. He still has cancer, and it'll probably get the best of him at some point, but he's stoked to have made it 15 YEARS past his initial terminal diagnosis. Obviously experimental trials can go the other way too, but it was a risk he was more than willing to take.
- BerislavLopac 3y agoThat is something I don't understand: how is experimental treatment on terminal patiens not allowed, but something like this is: https://arstechnica.com/health/2023/09/musks-neuralink-seeks-volunteers-for-brain-implants-whos-in/ https://arstechnica.com/health/2023/09/musks-neuralink-seeks...