I don't know about the situation in Australia, but in the US the FDA is way too slow and arbitrary, and it's costing lives every year, including, soon, mine: https://jakeseliger.com/2023/07/22/i-am-dying-of-squamous-ce... (HN discussion: https://news.ycombinator.com/item?id=36827438).

People with what I have—recurrent/metastatic squamous cell carcinomas—are in effect already dead. We should be able to try novel drugs faster, and, if they don't work or have serious side effects, fine, the end result is the same. If they do work, they may prolong everyone else's lives.

Have you tried obtaining the drugs by other means?

My mom is taking an experimental drug, not FDA approved, which my dad obtained from India after much research and consulting with her doctor.

Sorry to hear that, and I agree completely.

As the other commenter mentioned, I knew someone that had fantastic results just getting her “experimental” drugs from India.

Curious, are these easily found and purchased online? Or does one have to go through some "darkweb" channels?

They are of Indian origin so they knew doctors directly in India.

I’m sorry for what you’re going through. I think there really should be a separate FDA category for people with a few years left to live. Still not available to the general public but something a physician should be able to recommend to terminal cases.

Have you tried directly calling or visiting the trial location and try to get in touch with the person administering these to see if you can get in that way. Alternatively if you’re rich you can commission a lab in India to make these for you. They have a lot of experience making the covid mRNA drugs so should be able to pivot relatively easily if you’re paying enough.

I’m with you. I understand the ethical dilemmas of giving pharma unfettered access to sick people. Still, sick doesn’t automatically mean dumb. My wife reads medical journals and knows how to interpret them. I have much less (yet still more than most) medical experience than her, and I do risk analysis for a living. I think either of us are qualified to look at the statistics and make a rational decision about our own healthcare.

Same elitist attitude I saw on a recent NYT piece about paid full-body MRIs. "People might find stuff that isn't cancerous and freak out".

OK well, it might also find early stage cancers that show no symptoms until past the point of no return!

MRIs have no side effects aside from the high cost. Even their high cost is reasonably affordable if only done every 5-10 years. As long as doctors & patients make rational follow up decisions with the results, it's a net benefit to be able to get these scans every few years to catch early, slow moving, hard to detect cancers.

There are a wide range of cancers there really are no routine screenings for. Yes we screen for what.. breast, colon, prostate, skin.. But what of liver, kidney, thyroid, pancreas, and various others?

We had a close friend discover they had stage 2 cancer found during a CT scan after a routine medical procedure went awry. They were told that had the slip-up not occurred, they would have probably lived another 5-10 years, and not fallen ill with any symptoms until stage 4.

I don't understand the mindset that we should just pretend the tools aren't available to detect things earlier.

It's more complicated than that. Misdiagnosis comes with a high cost. What we emphatically do not have is a way to reliably confirm or stage without additional risky interventions, and that's before we even start discussing the mental health implications of misdiagnosis. So as a doctor, it's not about withholding information for the benefit of the patient, it's being aware that for many cancers, in aggregate, they may very well end up doing more harm than good if they screen for it.

I don't understand this logic at all. How can more information be bad? If you see a mass that looks very likely to not be cancer, for which the cost of further investigation is higher than the likely benefit, then the rational patient will agree not to investigate further. I don't see how more information can be bad unless you assume that the patient is an idiot or irrational.

Exactly. You could even have the option of contributing your MRI scans to academic research so that future identification of cancer improves, and set up a happy feedback loop.

The scary truth is modern western medicine is primarily optimized to extract revenue while reducing spending and improving patient outcomes is merely a side effect of that process. Even in places such as the UK NHS it's all about not finding out things we don't want to know so we don't have to spend money dealing with it.

This is why I look forward to when we can replace doctors (not nurses) with AI.

> The scary truth is modern western medicine is primarily optimized to extract revenue

MRI scans are a fantastic source of revenue, as are treatments for things that don't actually need to get treated. Reducing those things are actually doing the opposite of the motivation you're claiming.

Those raise revenue. Actual spending involves effort which cannot be easily industrialized, and is only done to maintain the prestige of the industry.

This is why getting tested for something which results in endless prescriptions is done enthusiastically while a test for something which might find something which requires them doing actual work provokes the sort of self serving concerns expressed elsewhere.

> This is why getting tested for something which results in endless prescriptions is done enthusiastically while a test for something which might find something which requires them doing actual work provokes the sort of self serving concerns expressed elsewhere.

You'll have to be more specific because right now this is just handwaving. What kind of "actual work" are you referring to?

It's generally actual medical researchers, who will neither get revenue or have to do actual work, who are objecting to excessive testing without patient outcome benefits.

> You'll have to be more specific because right now this is just handwaving. What kind of "actual work" are you referring to?

Anything that isn't completely reduced to an industrial process. i.e. we want to have a simple no-effort repeatable billable outcome for this or we won't do it and will claim doing so is counter productive or dangerous.

> It's generally actual medical researchers, who will neither get revenue or have to do actual work, who are objecting to excessive testing without patient outcome benefits.

And they're doing the establishment's dirty work by doing so.

To provide a concrete example, I'm in Canada, and my other half had to pay for private MRI and ultrasound scans to identify a lump that she was laughed out of the room by three successive doctors for claiming she had. The MRI got her finally referred to a surgeon that announced he'd never seen anything like it, removes it, end of story.

That's far from an isolated case. I know people in the UK that literally died from these antics.

At one point I was invited to the opening of some medical simulation centre, and the speeches were enlightening. Two things stay with me: tests in India demonstrated that qualified doctors were no better than unqualified doctors except when the qualified doctors were told some of the patients were faking as part of an experiment and they are being observed, but mainly "I read a study that showed ~5-10% of people in US hospital are there because of a medical mistake from a previous visit, so I laughed and commissioned an equivalent study to show how much better we are in Canada, except for us it was >15%". The person telling that story was rightly disgusted. Those are not numbers for a profession that respects patients in the slightest.

You will forgive people with actual experience on the receiving end of this nonsense for thinking that maybe it's not actually setup to provide the assistance it claims to provide, and is primarily for the aggrandizement of those engaged in the rituals.

Because further investigation is dangerous. So you see a mass which has an a posteriori probability of being cancer of 1%, but the investigation causes serious complications in 2% of cases, then the decision to investigate is not clear cut. The additional information has not only not helped but has led to additional stress.

Not all further investigation needs to be surgical. A mass that is found can be observed in decreasingly frequent ultrasounds or some other imaging and surgically investigated/removed only if found to be growing or passed a concerning size threshold.

A doctor jumping straight to invasive procedures seems to be a mix of poor risk management and rarity of this type of medical imaging.

My doctor for example, pointed out that actually in some East Asian countries, there are routine annual imaging tests done that pick up some of the types of cancer we do no screening for.

To me the reason we don't in US is simply how medical care is paid for - employer provided insurance, and some actuarial calculation that on the insured pool they'd spend more money on imaging than they'd save on high cost stage 4 cancer care. Personally I'm happy to advocate more for myself, even if it costs money.

Do you have any experience of cancer staging or medical imaging? It certainly sounds like you don't.

Both human nature and the legal system can be very hostile to "we didn't investigate anomaly A, B, C, D, E, ... in the patient's scans and test results, because none of them seemed likely to be worth the costs of doing so".

Yes. This to me is the same line of thinking as "in a meta study, wearing a helmet makes bikers more reckless and prone to injury so it's actually safer to be helmetless". No, actually it's safest to wear a helmet AND not become reckless.

So similar approach here - its safer to get the imaging AND remain rational in evaluating results & next steps.

You have the mistaken trust in the medical process in these matters. The reason best advice is to not investigate further is that the medical system itself is irrational and once you put the burden on them to act, they will act no matter what your best interest is.

Cancers are not always fatal and they don't always need treatment.

that have a reason, as it's been demostrated by a lot of metastudies you can find on cochrane that there is usually much more worst outcomes and long term effects on the broad of the population when misdiagnosed by overdiagnosing than just simply saving an extra 0.01% (not real number)

the same reason of why for example now there is an advocacy to end yearly mammograms on older woman, because the number of them saved by that practice is inferior to the ones that are misdiagnosed and then put under other unnecesary medical practices that end up hurting more by unnecesary practices on a lot of them that would have never developed a cancer or under pressure to the ones that no one will be able to save no matter how sooner they got the diagnostic.

infinite constant and unnecesary medical tests is not the way for now, maybe in the future, but not now.

Isn't this more a product of relative rarity of this type of imaging & average doctor not knowing how to react properly other than escalation?

Not ever spec on an image should mean cutting someone open or blasting with radiation.

Full body scans have quite some history. If they were effective at routine preventive detection, the NHS would deploy them in a flash, because its cheaper right?

The problem is the false positive rate is >> catching unknown bad things.

its the same with breast cancer in the UK there is a 3.1% false positive rate. https://digital.nhs.uk/data-and-information/publications/sta... which requies follow ups. Now as breast surgery is reasonably uncomplicated (source: wife did breast surgery in training) its not _much_ of a risk and is worth it.

However, if its something in the liver, brain or spinal column, the risk its pretty high. This leads to a higher chance of injury from surgery vs stopping something unknown.

This is why something that actually identifies cancer cells is much better than looking for smears on an image. Unless you have monthly MRI scans, from birth, you are going to get nasty side effects from invasive investigations.

EDIT: also most people don't really understand the difference between CAT and MRI scans. CAT scans are much cheaper, faster, and better at finding cancer (you can use dies and junk). given the difference in cost, time and comfort, a lot of people will choose a CAT scan instead. However regular CAT scans will give you a much higher risk of cancer. Something the kardashians pushing whole body scans will neglect to tell you.

Thanks for the edit and even the NYT article obscures this.

My point on MRI is that they do not themselves have side effects.

If you have a doctor that immediately sends you for a bunch of CAT scans and/or cuts you open, then obviously there are side effects.

And why would you immediately jump to either? If it's the first ever scan, and you see something unusual it could be monitored by a 6month/1year ultrasound and/or MRI followup.

Unfortunately it doesn't seem like any of the direct cancer detection solutions are there yet either. There's a recent startup that claims something like 5% detection of stage 1 / 10% detection stage 2 / 25% detection stage 3 / etc on a set of cancers, but they also just accidentally mass-mailed a bunch of negative patients that they have cancer.

You also express a false dichotomy - single MRI bad, but monthly MRIs for life good?

A sober reading of annual MRI/Ultrasound type tests without knee-jerk invasive followups when you are 30+ seem like a reasonable risk weighted solution in contrast, doesn't it?

> You also express a false dichotomy - single MRI bad, but monthly MRIs for life good?

yeah, this is badly expressed on my part. I was trying to get across that a single whole body scan without context (ie it hurts here, or it bleeds there or we suspect x) is difficult to interpret. think of it as a day's unstructured logs. Regular scans allows you to build up a picture of whats changing, and whats normal for you.

> A sober reading of annual MRI/Ultrasound type tests without knee-jerk invasive followups when you are 30+ seem like a reasonable risk weighted solution in contrast, doesn't it?

I think routine targeted scanning is something that is worthwhile. The UK does a number of them, and they were normally based on evidence of outcome. Prostate/breast/cervical etc etc. I personally think the future of public health is something akin to getting each personal a vitals dashboard.

But, I'm not sure regular MRIs will give us that. if the evidence changes though, then it should be reassessed.

"I remember her saying that she would rather die in 2 weeks and help push science forward, then helplessly linger for a couple more months."

But then the numbers won't look as good for the drug company.

But yeah, I agree. I wouldn't be surprised if some people with backgrounds in chemistry and stuff start helping others synthesize some of the drugs by sharing knowledge in the future, renting out equipment, etc. Dallas Buyers Club meets Breaking Bad would be interesting.

I think that it's more in the line of

- I jumped some walls that others won't be able because I knew the right people as we work together and they dedicated some of their personal time and public funds to help me, but they won't do it for you

but without sounding like he used the privileges he really had

Someone who died of an unrelated condition during the trial doesn’t push the science forward, though. They’re not worried about the risk to the patient when they deny entry to an existing trial: they’re worried about the risk to the data.

He’s not telling the whole truth.

It’s not his being a cancer researcher allowing full understanding of the risks and possible benefits that is important. It’s more that being a well-known and well-connected cancer researcher enables him to quickly access the contacts and have the discussions necessary to access unusual treatments.

The shame is that doctors (and hospitals, and nurses…) and the care they offer are like everything in life: on a spectrum of quality. Most people diagnosed with a serious disease (such as cancer) simply don’t have the knowledge, skills, time, and resources necessary to drive themselves further along this spectrum from the median towards excellence.

The system is such that to achieve optimal medical outcomes for oneself requires an understanding of the medical system, and an ability to work effectively within (or manipulate) it, to your own benefit. And it’s easy to understand that a well-connected doctor would be able to do that better than most.