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Comment by riffraff | Hacker News Reader

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.

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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.

> 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.

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.

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.

A simple way to stem most snake oil is to put all payments for snake oil treatments into escrow till the treatment is approved.

Then the snake oil manufacturer can peddle their unapproved treatment to as many people as they like, but they are losing money on every dose unless the treatment turns out to be safe and effective.

Obviously you need a big team of scientists on the approval panel to make sure no snake oil salesmen are faking trial data to get their payday, but that seems solvable.

I love the innovative thinking here but I can easily think of a way to game this system. Snake Oil LLC mounts a PR campaign claiming the governmen is trying to shut them down by delaying approvals so they can't get their money so they can't undercut Big Pharma. If Snake Oil (TM) doesn't work, why have patients ponied up $X billion in fees over the years?

You have enough stories like this (plus there will inevitably be some mistakes by the FDA that will be shown to be proof of government perfidy) and the conspiracy theories will have a field day and fuel a black market.

I mean, this is just a “sufficient misinformation” argument that could be levied against literally any kind of policy. No policy can survive sufficient misinformation.

The point I am making is not a rebuttal to this specific proposal but that any such change will have an attack vector. Hell, the reason we are having this discussion is because of the (unfortunate) case of someone not being served by the current policy. Any new change to the policy will have such cases which will lead to this same discussion.

Creating an equitable drug approval process is a true dilemma.

But at the end of the day, failed treatments still kill people. Some may choose the experimental treatment, and die, over the crappy chemo, which gives them a chance to live. Escrow won’t bring them back.

True. But speeding up the search for a treatment saves many future people.

The ethical tradeoff between definitely saving a life now or probably saving many lives later is an age old problem, but one which society hasn't properly converted into laws and processes in medicine.

If I knew I were going to die, I'd at least want to try something new even if the chances were slim. If it didn't work out, at least it'd be a new data point for those that come after. That means something.

>A simple way to stem most snake oil is to put all payments for snake oil treatments into escrow till the treatment is approved.

It should be a escrow release when a patient is cured. Let the science and knowledge speak for itself instead of statistic doing the talking.

The problem is these drugs companies are the stealth chemical weapons development program for the military.

It should be a escrow release when a patient is cured.

This just winds up being cruel. We don't understand a number of diseases, and we don't know how to cure them.

But we can treat symptoms, and sometimes prevent them even if it isn't a cure. It's OK to make Insulin Plus that keeps diabetics alive longer. I have MS, and freaking trust me, I want my non-cure medicine. Without that medicine, my chances of having a very poor quality of life full of discomfort increases pretty dramatically. Lots of things are like this: No real cure, but we make folks lives better by treating symptoms or preventing some damage and things like that.

The only way to not be cruel is to give treatments that work even if they aren't a cure.

Symptoms are used to diagnose, ergo is a treatment of symptoms a cure?

Lets not forget the expansion of the DSM which pretty much incorporates every human being as having a mental health issue or sexual deviancy fetish. There is no normal in the DSM, so would some medical experts start dialling back on diagnosing new conditions to pad out their careers and income?

That bit about the DSM is a pretty obvious layperson's point of view: It is easy to say that you fit the criteria when you forget that the symptoms need to have negative consequences on your life. And there is 'normal' - normal is a range.

There is a huge difference between being down after a loved one's death and finding yourself feeling that way for no reason or not coping 2 years later.

Considering that - there is no way to answer the last question. That's just a "what if" argument and fails to take into consideration that there is a shortage of mental health experts, and there is absolutely no need for someone to do that sort of thing.

And no, no everyone has a "sexual deviancy fetish", just for the record.

As far as 'treating symptoms'... I have MS. I take medication that slows the disease. If I had fatigue or pain, they would try to treat that too. If it causes depression - which it can - they'd try to treat that. No matter what treatments I get for symptoms, I still have the disease. There is no actual cure.

> That bit about the DSM is a pretty obvious layperson's point of view: It is easy to say that you fit the criteria when you forget that the symptoms need to have negative consequences on your life. And there is 'normal' - normal is a range.

Define normal? Likewise considering the all encompassing vagaries of some words, as noted in legislation, and the lack of detail that exists in descriptions of diagnosis and symptoms, whilst this makes it easier to generate AI's to replace some experts, its not really helping the patient is it?

>And no, no everyone has a "sexual deviancy fetish", just for the record.

Define normal.

> There is no actual cure.

You are uniquely placed to actually find a cure, because I'm reminded of how tolerant (lab) animals are when level 1 of maslows heirachy of needs exists, and I'm also reminded that (lab) animals can not convey information that an owner of a pet or intelligently constructed lab experiment could elucidate.

The phrase "Dont take no for answer" springs to mind, and Thomas Pynchon "If they can get you asking the wrong questions, they don't have to worry about answers.".

Survival of the fittest comes in all shapes and form. I know that copious amounts of histidine a precursor to histamine also causes remyelination of the nervous system, so maybe you have an amino acid lead that might be worth investigating.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4705972/

> A simple way to stem most snake oil is to put all payments for snake oil treatments into escrow till the treatment is approved.

Even simpler is to prohibit payments for these experimental treatments, but let people who whould die anyway participate in them as long as it is free for them. In return the drug companies could use the outcomes as data points towards their aproval applications.

Why would a drug manufacturer do that? Why would they offeir their advanced but as of yet unaproved drugs for free? It is true it would cost them the manufacturing cost of the drug, but what they get in return is data on how efficient/safe the drug is. Assuming the drug works well they could use that data to prove their case and get approval. And if it is safe and has the desired effect they get their aproval and they could then charge for their drug as usual.

This sets the right incentives for the drug company. If they know they are selling snake oil they would be crazy to offer it for free, especially because all it would do is to prove that it does not work. If they think it can work they gamble with their own money. Which is good because the drug company knows the most about their own drug. The patient in general is not knowledgeable enough to evaluate the chances of an experimental therapy, but the drug company is.

> Even simpler is to prohibit payments for these experimental treatments, but let people who whould die anyway participate in them as long as it is free for them. In return the drug companies could use the outcomes as data points towards their aproval applications.

Hell I'd even approve my tax money to go to those companies which end up saving lives as reward.

That would never happen for good reason. Drug companies would have every incentive to bias the results towards approval by giving the drugs to detain patients. I’m not exaggerating when I say this might be the worst idea I’ve read in this entire thread.

What do you mean with "by giving the drugs to detain patients"? Is that a typo? I don't see how companies holding on to terminally-ill patients makes the trial results look more favourable. Are you suggesting that companies might not release the bodies of the patients that died during the trial?

I meant to write “certain”.

> Drug companies would have every incentive to bias the results towards approval by giving the drugs to detain patients.

What do you mean “detain” patients? Remember we are talking about people who have a terminal illness with no known cure. How can drug companies “bias the results”? Obviously I’m not saying we take anything they say as gospel, but in short order these patients are expected to die. If a drug managed to cure them that would be quite hard to falsify don’t you think?

> I’m not exaggerating when I say this might be the worst idea I’ve read in this entire thread.

Well, thank you. I aim to please. Are you sure that you understood the idea well? If you are, could you please explain with more words what is the misbehaviour you are worried the drug companies would commit?

> What do you mean “detain” patients?

I meant to write "certain".

> How can drug companies “bias the results”?

Choosing appropriate patients will lead to longer survival rate unrelated to the drug in question. The whole point of double-blind studies is to avoid this.

> Well, thank you. I aim to please. Are you sure that you understood the idea well? If you are, could you please explain with more words what is the misbehaviour you are worried the drug companies would commit?

I did understood you. You, however, don't seem to understand statistics or economics. Your idea directly incentivizes drug companies to choose patients more likely to make their drugs look better. It is a truly horrible idea.

> Your idea directly incentivizes drug companies to choose patients more likely to make their drugs look better.

Yes. So? The whole patient group in question is destined to die fast. The best we currently can offer them is aleviate their discomfort and help them come to terms with their demise. If the drug company can identify a subgroup who they can possibly save and actually help those that is winning.

> You, however, don't seem to understand statistics or economics.

And you are abrasive and rude. These exclamations don’t add much of anything to the conversation. If there is something particular I am overlooking please adress that instead of speculating about the areas you think I am deficient in. Thank you.

You are aproaching it as if the question we are asking is if this is the best study design. But that is not the question we are asking. There is a patient who we believe is about to die soon. In comes a drug manufacturer and says to the patient: “you do not have to die. I think I have the cure for you”. The patient wants the drug the drug manufacturer is offering. The question is if we are to interject and stop the drug manufacturer giving the patient the drug, and if so under what circumstances.

I am saying: “yes, we should stop the drug manufacturer if the drug is not proven to be effective yet, and he is asking for money for it. There is too much of a chance that the drug manufacturer is a snake oil salesman in disguise and only wants to extract the wealth from the patient and the patient’s family. But if he is honest they can give the drug for free.”

In turn you are saying. “We should stop the drug manufacturer giving the unproven drug to the dying patient even if they are giving it for free, because it is possible that they cherry picked this patient. So though luck dear patient, you must die in the name of scientific rigour. I hope you understand.”

Do I understand you right?

> You are aproaching it as if the question we are asking is if this is the best study design. But that is not the question we are asking. There is a patient who we believe is about to die soon. In comes a drug manufacturer and says to the patient: “you do not have to die. I think I have the cure for you”. The patient wants the drug the drug manufacturer is offering. The question is if we are to interject and stop the drug manufacturer giving the patient the drug, and if so under what circumstances.

This is already largely possible in most states and called "right to try".

> Do I understand you right?

No you seem not to be. Giving away drugs is fine and largely already possible. Choosing patients and then pretending that the data gathered has any reasonable statistical validity when considering general approval of a drug is totally crazy. I think there is essentially zero chance the FDA would ever go for an idea with such overt conflicts of interest so I'm happy your idea will never turn into reality.

> This is already largely possible in most states and called "right to try".

The article’s author is convinced it is not covering them. Do you know otherwise? Perhaps you should let them know. You might save a life.

> Choosing patients and then pretending that the data gathered has any reasonable statistical validity when considering general approval of a drug is totally crazy.

Would like to mention that it is your adition that the drug manufacturer chooses the patients. It was not part of my original comment. And it is not core to the idea.

One can simply imagine a protocol where the manufacturer declares their criteria (what condition, what severity[1]) and how many doses they are able to provide and those “places” get filled up with volunteers. And this of course can be made even more buletproof.

1: and before you point it out, of course if the manufacturer is only willing to test their drug on not-so-bad-but-dying people then they get approval to be used on the same selection.

This plan seems to have excellent incentive alignment and basically mirrors the system in place, but without the need to be approved for clinical trials.

Experimental treatments being available to people with no options (there must be no applicable option with a proven probability of success or this becomes very questionable) could save drug companies millions-billions in the off chance that it proves to be incompatible with human testing or fails to produce the expected effects in humans.

I would take this up a notch or two for patients in a short-range situation that is certainly fatal, opening the door for them to try treatments that have just barely crossed en-vidrio and seem to have acceptable toxicity in mouse models. This would essentially be donating one’s body to science but in a much more useful form, with the side benefit of a slim chance of life extension.

This could benefit humanity by significantly reducing time to market for some drugs and cutting costs on eventual dead-ends.

I don’t think these people would be useful. Pharma needs controlled double blind studies to actually tell if the therapies work.

Of course, for actual efficacy, but you can tell if a treatment has a negative reaction or fails to effect the expected physiology in the expected way with a very small number of samples.

If everyone you give it to dies from reactions, or the expected effects seem to be happening on a physiological level, you don’t know much about efficacy but you do know a lot more about the eventual prospects for an actual clinical trial. It’s basically an extension of en-vidrio testing.

No, that does not set the right incentives. You have completely written off the harm of dangerous or deadly drugs.

The HepC drug Sovaldi brought in around $50B-100B in sales, but probably costs less than $50 to administer. Under your scheme it would make economic sense for a company to kill 1,000,000,000 people testing variants until they chance upon the right one because they incur no costs for administering deadly experiments.

The problem with your scheme is that human lives are valuable. A unsafe drug that causes harm or death is immensely destructive. If we want to be completely reductive, the actuarial value of a human life is around $10,000,000. A unsafe drug could kill the person resulting in a $10M loss to society. Therefore, the company should be required to escrow $10M per person until the treatment is done, paid out proportionally to any potential death or harm in excess of the gold standard treatment. Only then would the incentives be reasonably aligned.

This is obviously a very reductive treatment, but it helps illustrate the problems with unrestricted testing.

> You have completely written off the harm of dangerous or deadly drugs.

I was only talking about testing on people who we know are going to die fast because of their condition, and we do not have a way to save them in any other way. And naturally only with their consent. People who have a ticking clock and therefore willing to try anything.

This is the context the article in question talks about.

I think you forgot to price in the fact that some people live with what is effectively a time limit sometimes counted in months or weeks (like the person from the linked article).

> A simple way to stem most snake oil is to put all payments for snake oil treatments into escrow till the treatment is approved.

I doubt any company anywhere (legitimate or not) would provide drugs under such conditions. It would make much more sense to just focus on getting approval instead.

There's a trivial well-regulated market solution: medical company A registers treatment B with the FDA; patients can try experimental B from A on A's dime: let them out their money where their medicine is.

Exactly, a treatment should be free until approved by FDA.

The team would try to make the treatment an experiment useful for science. They would have no incentives to kill prematurely patients that would otherwise have lived longer. They would work in good faith.

Disclaimer: I actually had had a treatment (surgery) not yet approved, it saved my foot from amputation. This was in Europe.

The doctor was adding me to the long lists of patients he saved. He also trained other doctors to perform the surgery. Eventually the procedure was approved by FDA and in Europe. I'm glad to have contributed.

Before going on that I read all the articles related to my problem (many thanks to sci-hub) and then send a email to the surgeon. He said "I can indeed help you" (best day of my life) I didn't pay anything (only the plane tickets to get where he was)

It should also be free after it's approved by the FDA.

How would that work? Would the government use money from taxes to pay the drug companies for their costs, plus some profit margin?

Before approval it's research, it's an investment. When in developing phase it's normal not to make money.

After approval it's the health insurance or the patient that pay. In countries like Singapore or France the taxes pay so it's "free" (actually it's an "insurance" backed by the govt)

This is a crime, but it's very very hard to prove

Then how do you know it's prevalent?

> Then how do you know it's prevalent?

Let's just say I have a personal blacklist of therapeutics companies I will NEVER seriously work for (though I have done a couple things for them that satisfied my conscience), and a few electrical schematics squirreled away should I need to defend myself someday....

Id let people use unaprooved treatments labeling them with big warnings in red that this is not approved and may be snakeoil or something like that. Whoever attempts to hide, remove such labels fined severely, possible jail time. Couple of scandals of unaprooved treatments wreaking havok and very few would risk it afterwards.

Would you email me? I'm really interested in learning about this. I have similar intuitions about places to avoid.

Maybe someone should create a throwaway and provide a list of they’re concerned about retribution. People not calling out scum because they are afraid of the consequences of outing criminals makes the world a crappier place for everyone.

> 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.

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.

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.

I share the same mindset as u and I’ve been told countless times something to the effect of “yea but that’s not realistic” yet I never stop. I’ve often wondered why that is; I assume it’s just some psychological thing/on principle of not simply accepting this thing I perceive as stupid.

Additionally, I think it’s partly me just wanting to spread awareness about <stupid thing> and possibly engage smarter people than me to devise better resolutions/implementations as well.

Wondering if u have any thoughts or I’m just galaxy braining it

IMHO, the solution is not advocacy for policies where people get to choose and take the risk and get whatever results they get. Because there will generally be more people advocating for forced "good" choices.

The solution, I think, is to teach people to understand risk, choices and consequences better. With enough teaching, maybe the advocacy for the forced good will decrease.

Let's say a treatment kills 9 out of 10 people. Maybe those 9 were terminally ill & that's why they died, but maybe the company was just lying and their treatment was doing nothing or killing people more quickly. How do you determine that? When would you shutdown a "death factory"? Would you require mandatory disclosures of the death rate & risks, or could a company hide those facts from prospective patients, only talking about the patients who survived? If they can't show efficacy, should they still be allowed to sell to patients?

I think the ideal of regulation is to try to remove the guesswork & expertise required for the end user to do due diligence. It's not perfect, but at least some minimum level of regulation, such as mandatory efficacy disclosures, would be needed.

Why do you think you could always evaluate the options properly? What if that is not the case?

I accept the responsibility and all that it entails.

I don't fundamentally disagree with you, I just understand why, as a society we may choose a different thing.

One of the reasons my father died of cancer quickly is that he was convinced by a chiropractor/osteopath that he had trouble with his back which could be cured with manipulation.

He was not an idiot, but sick people will make bad choices.

The abstract world of "either I die or I try this experimental treatment" is far more blurry, and there lies the problem, in my very humble opinion.

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.

And how do we assess whether "someone understands the risk"? Often, I suspect nobody really "understands" the risk of some minimally-tested, experimental treatment.

This is a fully generalized argument against personal autonomy.

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.

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.

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.

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.

Your comment makes something that happens quite rarely (1-5% based on agent, and not quickly) seem like it happens quite frequently.

Some of these trials had double digit percentage deaths within 30 days.

Because the trials sometimes take on people with very little time left.

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.

Please provide some examples if you can! I could use the references

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.

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.

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.

C’mon, it’s extremely disingenuous to compare abortion and contraception with untested treatment.

Assisted suicide and euthanasia are better examples. If you have autonomy to die, you should have autonomy to die trying not to.

Well, those are pretty controversial topics, so I'm not sure how much the analogy helps.

It helps underline the hypocrisy of the current moral norms.

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.

> 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.

I agree: not completely untested, but not tested sufficiently to get an FDA approval. They show early promising results.

BTW people picking such experimental treatments would provide important data points.

If the treatment needs to be administrated by a doctor, it demands the resources of the hospital and connected system, for a novel process. It does introduce a real risk factor for the rest of the healthcare provider’s system and the other people counting on it. I don’t see the comparison you’re making at all, really - a novel treatment has completely different context from an abortion.

Talking about immunotherapies feels like oh yes of course it would be worth it…but should you also be able to print out a blog article about holistic medicine and demand the hospital follow that treatment plan for your illness? Should a person insisting their illness be treated with an untested therapy from a disreputable company get a hospital bed instead of you for the same condition because they arrived first?

IMO this seems like something where the burden on the medical system is at least as much of a factor as the risk to the patient.

If I’m terminal and my doctor and I want to try the treatment, who are the feds to tell me no?

Screw ‘em

We are all, in some sense, terminal. At what number of months or years left to live does your terminality become sufficient to let you try whatever?

It took about 40 years to find efficient ways to treat AIDS.

It took about one year to find efficient ways to treat COVID-19.

So, if you have a condition with a few years of life expectancy remaining, maybe it's worth it to wait for some promising scientific results to turn into an approved medicine that will cure you. If you have a few decades (e.g. the normal life expectancy), even more so. If you doctors give you a few months though, maybe the "try anything" approach is a better gamble.

I don't have an issue with people taking magic beans to heal themselves; it's the sellers who knowingly (whole other kettle of fish there) sell snake-oil that are the immoral ones.

My friends mom bought a fancy light for 2000€ that was supposed to cure her cancer. Spoiler: it did not.

Now, that wasn't in the US, and I'm pretty sure the quack device wasn't approved as a medical device. But the fact is that fraudsters will sell their fake medical products to desperate patients who have nothing left to try. These people should rot in jail.

I'm sorry to hear this.

My idea is not about quack medicine. People should be discouraged from using quack medicine, and made abundantly informed that it's guaranteed not to work, while consuming their precious time alive which other treatments might extend.

My idea is about something that has promising results in scientific trials, but may carry unknown risks, and so is not yet approved. The risks may be worth it, because the alternative is a certain and quick death.

The patients should, of course, be also abundantly informed about the risks, the odds of success, etc.

Of course, some people would do things that we would find irrational, no matter how we try to persuade them against that. This may of course be painful to see, but I don't see why should we curtail the free will of an adult in their sane mind, as long as nobody's rights are being infringed. Certain new things always look crazy even though they have merit: see vaccines, blood transfusion, etc.

Yes, and the FDA often does get pressured into approving treatments of dubious efficacy: 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.

> 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.

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?

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.

I guess the FDA has a role in minimizing the market for snake oil.

>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.

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.

Maybe the fact that these are the ones you remember is an indication of the problem, rather than evidence that it is wrong.

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