So the treatment worked, and she appears to be recovered from what might otherwise have been treatment-resistant, fatal cancer.
But she was only able to do so because of having the skill and access needed to self-administer the cure. How many people die every year because we don't dare risk any deaths from uncertain treatments like these? Sure, they aren't ever going to be perfect, but- what's the net?
What doesn't make its way into case studies and HN headlines is all the stories of people who did get access to uncertain treatments and died anyway. Sometimes faster than they would have without the experimental treatment at all.
This isn't a case study about a breast cancer cure. This is a story about a single individual's cancer's response to an experimental treatment. For comparison, there are case studies of spontaneous remission in refractory cancers triggered by seasonal flu.
Virologists aren't sitting around waiting to develop cancer before they decide to roll out the miracle cancer cures. Oncolytic viruses have been researched, studied and tested on cancer patients for almost a century now.
> Virologists aren't sitting around waiting to develop cancer before they decide to roll out the miracle cancer cures.
You say that, but the article suggests otherwise. This virologist did believe that her colleagues were sitting around not rolling out something that would cure her. It is pretty easy to see how a lot of cures would be stuck in the research world, unable to get to patients; there is no reason to believe they are moving quickly to bring cures to market. You can see people arguing up and down the thread how they have higher priorities than testing stuff to see if it might work.
> This virologist did believe that her colleagues were sitting around not rolling out something that would cure her.
And because her outcome was so unexpected and unusual it got published as a case study. What you don't see are all the cases where the experimental miracle cure treatment did not work. What you also won't see in headlines are all the trials where putative miracle cures and other promising treatments failed to demonstrate survival benefits in larger cohorts than 1.
One of the counterintuitive things about cancer is how badly individual cases and responses to treatment generalize to the broader patient population. If you didn't know any better, you could easily read a story like this and think "wow, this breast cancer cure was just stuck in a lab somewhere!" But to put a story like this into context, you need to understand just how many individual miracle remission stories there are, and how varied individual cancers and responses to treatment are.
There are potential miracle cures almost everywhere, and a large number of them are being aggressively researched, tested on cancer patients at any given time - often as part of combination therapies. Some of these promising technologies do become breakthrough cancer treatments that create durable remissions, such as checkpoint inhibitors. The rest fizzle out.
I'd suggest this virologist actually does understand her field quite well. You're in the awkward position of arguing that an expert in a field doesn't understand what she is doing while citing evidence to support yourself that you (by construction) don't have. It is equally likely - actually quite a bit more likely - that we do have a huge number of improvements over current best-practice stuck in labs because people are insisting on damaging levels of certainty rather than letting people try things. This woman seemed fairly confident that she could achieve an improvement on clinical best practice.
There are risks, but having cancer is a risky business right from the get go.
I notice you've watered down your terminology from "cure" to "improvement on clinical best practice" which are pretty different things in the context of cancer treatment. However, I can respect the switch and I'll treat it as a sign you're starting to treat the subject a bit more seriously. It's more accurate to the outcome in the case study, too, since treatment was locoregional and neoadjuvant only. Full remission was only achieved with the traditional interventions of surgery and adjuvant targeted therapy.
> You're in the awkward position of arguing that an expert in a field doesn't understand what she is doing while citing evidence to support yourself that you (by construction) don't have.
No. I'm in the non-awkward position of arguing that non-experts should be careful about interpreting a single case study without context. Especially in a way that implies miracle cancer cures are sitting around in labs with no one paying any attention to them.
I don't think the average HN reader understands just how many wildly different treatments, drugs and therapies are being thrown at different cancers and how quickly medical oncology moves as a field. Cancers are an extremely complex family of diseases. Early results and case studies are correspondingly extremely difficult to interpret due to the variation in individual responses and disease course.
The existence of a "miracle" cancer treatment is almost ruled out from first principles. But if such a miracle treatment is sitting around in a lab, it would be non-trivial to tell it apart from the thousands of other promising candidate therapies that go on to pan out to nothing.
> I don't think the average HN reader understands just how many wildly different treatments, drugs and therapies are being thrown at different cancers
You say that as though it supports your thesis, but you obviously haven't thought thorough the implications if you don't believe there are a bunch of cures sitting around in labs.
You still can't deal with the main weakness in your argument here - this woman, who is very close to the pointy end of the stick and qualified enough, is evidence that the virology world is in fact sitting around on some fairly important techniques that could help cure her. Which is pretty much what we would expect given that taking something from the lab to the other side of the regulators involves enormous costs and demands of rigour.
And you seem a bit too focused on miracle cures. I suggest discarding that focus, miracles generally imply that something is impossible or unlikely. It is better to focus on realities and probable outcomes.
The counter-argument is "how many more would die if we just let desperate people yolo on themselves." Which brings us back to the current compromise solutions.
I think the main worry is scam artists who essentially pray on desperate people with "cures" that do nothing at best and shorten their lives at worse.
I'm fine with letting people try whatever they want if there are no other options (their life, although informed consent is tricky) however i dont think we should allow marketing such things to patients or allow anyone making money off it.
There are already plenty of people who promote scam cures. We shouldn't deny potentially useful treatments to patients in dire need just to reduce somewhat the business of scammers.
Detect and punish scammers if they are an issue. Allow people to take risky medical treatments if they have serious incurable illnesses.
All other considerations aside, the technical detail defining this case is that she administered herself this treatment before other options. Which made all the difference, and which makes it not an option "if they've exhausted other options"...
I believe the main point is to allow the patient to choose from a set of treatments. Correct me if I’m wrong, but isn’t this already happening at some level, where patients receive treatments that are in advanced stages of drug trials?
I imagine there could be other options available, and many times the issues are related to logistics, bureaucracy, and corruption. For instance, many people around the world go hungry due to logistical challenges (e.g., political interference) [1].
It seems we accept the status quo, while some companies are sending cheaper spacecraft into space.
Health care is not a farmer’s market. You don’t pick from ten different kinds of potatoes. There will be tons of people with magic treatments with no statistical evidence or even fraudulent data. Snake oil, literally. Net negative for society.
Sure, but when someone reaches the final stages of life, the logic shifts. This is similar to the debate around euthanasia: do individuals have the right to end their lives or choose alternative treatments, even without strong statistical backing? Your comment also raises another important question: does the "net negative for society" truly matter in these cases? That's a political perspective, and like euthanasia, it's subject to debate.
I am firmly against selling fraudulent products to people, but I also believe there are ways to introduce unconventional treatments, like those from an 'irreverent Dr. House.'. I think regulations should evolve to keep pace with the acceleration of science, as seen when the COVID vaccine was developed swiftly in response to urgent needs.
Exhausting all treatment options is not the same as having nothing to close.
There's no shortage of cancer patients at end-of-life stage undergoing aggressive treatments and/or experimental therapies in clinical trials for minimal to no survival benefit. For almost all of these patients, the best option for them and their loved ones will end up having been a palliative or best supportive care model.
Once you've actually exhausted all other options, even a treatment that works probably won't save your life. Breakthrough treatments usually make a bigger difference when the conventional 5-year survival rate is around 20%, not 0%. Most "broad-spectrum" cancer treatments (radiation, cell division inhibitors, surgery) tend to cause permanent damage to multiple organs.
You can't see any externality risks to nonconsenters of having people use unapproved viruses on themselves sold from hucksters on TV infomercials and stuff?
And why would you need to spend billions then? And why would you need to buy anything but a sugar pill instead of some unproven bs which is completely unregulated and might be something from glass clippings to something that could genuinely hurt you?
These same arguments get trotted out every time someone wants to defend very stupid practices and they have no teeth.
Identifying homeopathy as a case where less freedom would benefit someone is not sufficient to argue that it's a better policy.
Everyone who laughs so confidently at homeopathy, would likely do the same for a cutting edge treatment, which has yet to be widely recognized as effective. And in that case a lack of freedom would lead to a worse outcome.
That's complete hogwash. Homeopathy's core idea is that you can magically negate a poison by diluting it billions or trillions of times into a cure usually to the point where there's no detectable component anyway.
Experimental treatments definitely invite skepticism, and should. Humans can generally contain more than one level of skepticism - this treatment has a certain rate of failure, this treatment is unproven, and important, this treatment has no mechanism that could work and is a scam meant to separate a fool from his money.
Easy: Zero. What you describe as "desperate people" are people who would already die without "yolo[ing] on themselves", so, by definition, the worst outcome is that they still die.
The same? Desperate people yoloing in themselves is the number of people. regulating this sector instead of just keeping out the quacks was a thorough mistake .
There's a fairly obvious trade off here. Experimental treatments are often crap. But occasionally they're the thing that will be the standard in ten years, and only isn't now because it hasn't been thoroughly studied. Except that if you don't get it now you'll be dead in ten years.
This is the heart of the difference between freedom and paternalism. If people can choose for themselves then 90% of the time it's going to be ineffective, if not an outright scam. But if people can't choose for themselves then 100% of the time they die. The paternalists say it should be the latter, because scams are bad.
The hazard here is in the nature of scams and how they propagate.
Let's suppose in the base case - experimental treatments are largely suppressed and difficult to access - the odds are 10:1. That's a 10% chance of significantly prolonged survival, against 90% ineffective. And some of those "ineffective", maybe ten or twenty percent, will be actively harmful: shorter survival or a nastier death.
Unchecked, though, scammers will proliferate, and the odds get worse. Because incurable illnesses are, relatively speaking, very common compared to 10% shots at curing them. (If the reverse were true, we'd have eliminated many more of them with a shotgun approach). So now you're looking at 1% effective outcomes vs 10-20% harmful outcomes.
And that's before we even factor money - and financial harm not just to the patient but to their family and loved ones - into the picture.
Granted it's possible to imagine a much more agile approval process than the one we're lumbered with today. We may not have got the balance right between suppressing scams and approving treatments for people who otherwise have little hope. But the need to hold scammers down - and, perhaps even more so, ego-tripping quacks who have convinced themselves they're acting honestly - is real.
"First, do no harm" has been with us almost 2500 years, and with good reason.
> And that's before we even factor money - and financial harm not just to the patient but to their family and loved ones - into the picture.
This can't be a serious argument when the ordinary medical establishment is the thing wiping out the bank accounts of anyone who gets seriously sick, regardless of whether or not it cures them.
If people are facing death and they have money, they're going to throw the money at attempts to not die, one way or the other.
> So now you're looking at 1% effective outcomes vs 10-20% harmful outcomes.
But in this case the 10-20% harmful outcomes are in the nature of "you still died but maybe a little bit sooner" whereas the 1% effective outcomes are that you would have died and instead you didn't and lived another 50 years. If I have two months to live and there's a button I can press that has a 99% chance of making it one month and a 1% chance of making it 50 years, I'm smashing that button with no regrets.
You're also assuming we have no mechanism for detecting scams. But we do. Professionals go to school to learn science and that allows them to detect bullshit. If a substance is supposed to work against cancer by inhibiting cell growth and it's the sort of thing that could plausibly do that, it might not be a cure for cancer but it might be worth the attempt if you're going to die anyway. If a substance is supposed to work against cancer by mechanism of the astrology of Capricorn, that's a load of bullocks. So then the patient can ask a scientist they trust if the thing has any plausible mechanism of action before they waste their time or money on it.
Some of them may still be fools, but not all of them. Especially when the ones who aren't fools are the ones who are more likely to not die, which is the sort of thing otherwise-apathetic people tend to care about.
Moreover, in general "we have to kill some diligent people to keep some idiots from wasting their money" is not a sympathetic argument.
That's what right to try is. There are people who believe that should not be the case.
But the same logic also works for anything non-fatal as long as the proposed treatment is also non-fatal. If you want to try something and it probably won't work but it also probably won't cause permanent damage, there is nobody who should stop you from finding out what happens for yourself.
And in general nobody will stop you doing stuff to yourself.
The problem comes when these things are advertised or otherwise promoted. Ideas don't exist in a vacuum, they can become cultural parasites for all sorts of reasons, and even if they don't begin as a scam, there are always a bunch of get-rich-quickers waiting in the wings to sell, say, sheep dewormer to people with a respiratory virus.
> And in general nobody will stop you doing stuff to yourself.
The relevant doing stuff to yourself here is that you want to take some particular drug. Unless you're a competent chemist with the relevant equipment, that implies that somebody would have to be able to sell it to you in order for you be able to do it.
Also, what happens if the thing you want to do to yourself is to take MDMA?
For this reason I have mixed feelings concerning Richard Scolyer’s glioblastoma treatment. On one hand it’s great that he has possibly found something that works and will in time become the new standard of care. At the same time it is disturbing that thousands of patients who are not renowned scientists have to die without a chance to try the same treatment.
You make a good point. Could there be a case for new ethical considerations to be made. The issue is patients are very vulnerable and no one really knows how bad the downside may be. A prolonged agonising or disabling death can be far worse.
> How many people die every year because we don't dare risk any deaths from uncertain treatments like these? Sure, they aren't ever going to be perfect, but- what's the net?
The trials exist. Getting patients enrolled in the trials is the biggest problem. Navigating the bureaucracy is a huge problem ("Please be dying, but not too quickly, part 1: a clinical trial story" see: https://bessstillman.substack.com/p/please-be-dying-but-not-...).
Even worse--we know the net to this stuff. It's negative and large.
We just went through this. Desperate people are stupid. Look at all the snake oil about Covid cures before the vaccines and how much damage that snake oil did.
And it's worse than that. It encourages ethical problems among the doctors themselves. You're sure your treatment will work it just needs a couple more patients. What will you do to get those patients?
Finally, if you throw the system open, the people playing by the rules will get drowned by those not. Bad money drives out good and all that.
The system as we have it certainly isn't ideal, but throwing things open would be much, much worse.
Experiments regularly take significant risks with peoples lives in the US, it’s far from 0. The barriers are surprisingly low, but come from a history of terrible experiments on the uninformed. People blame the FDA, but lawsuits are also considered a significant risk.
Far less than if we didn't have a proper system in place. We literally have miracle cures for things like measles, polio, and small pox yet people are far too stupid to take them. You think just letting people try whatever they want on people in a desperate situation is going to lead to good things?
But she was only able to do so because of having the skill and access needed to self-administer the cure. How many people die every year because we don't dare risk any deaths from uncertain treatments like these? Sure, they aren't ever going to be perfect, but- what's the net?