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I am dying of squamous cell carcinoma, and potential treatments are out of reach

jakeseliger.com

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Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#401

Post by dakial1 »

nextos wrote: post #49
riffraff wrote: post #14

Earlier quoted context omitted.

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 op…

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.

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.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#402

Post by Dylan16807 »

Arainach wrote: post #78
timmytokyo wrote: post #61

Earlier quoted context omitted.

Right now he has a 0% chance of survival. If the experimental treatment is at all effective, the probability of not being in the control group multiplied by the probability of effective treatment is greater than 0%.

The probability of a more painful death is also greater than 0%. So it the probability that something could go wrong and cause publicity which would interfere with the testing or approval of the drug and affect other people's access in the future*. There are always tradeoffs. *this person takes the drug. Two days later they die of a heart attack. Was it caused by the drug? How many resources should be spent to determ…

The heart attack thing isn't a tradeoff. Whether they test now or test later it has basically the same chance of happening.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#403

Post by haldujai »

porejide wrote: post #397
haldujai wrote: post #389

Earlier quoted context omitted.

> Do you know what else sounds like a recipe for killing people? Not allowing people to access therapeutics that might save their life because it hasn't yet gone through regulatory approval yet for whatever reason (delays, too expensive to submit), etc. You're assuming a therapeutic not tested in humans has a better chance of saving someone's life than something tested and available. Do you have any evidence to suppo…

The issue with antipsychotics tends to be the side effects, not the efficacy Amisulpride, for a lot of people, would be one of the best antipsychotics. Antipsychotics are incredibly important medications for a lot of people. It really matters that amisulpride is not available. https://psychnews.psychiatryonline.org/doi/full/10.1176/appi... "A comprehensive meta-analysis published in 2019 in JAMA that compared 32 oral…

> Antipsychotics are incredibly important medications for a lot of people.

Agree.

> It really matters that amisulpride is not available.

Not sure about this, I'm not a psychiatric expert but my cursory lit review shows conflicting meta-analysis as to whether amisulpride is better than 2nd gen. Although your source is newer Cochrane is generally the gold-standard on SRs and the included studies in the 2019 JAMA article predate the Cochrane review, they detail the limitations of comparison.

Looking at Canada, amisulpride is limited to special access and is also not first line.

The UK pharmacotherapy guidelines are also waffly and cite limited evidence to guide firs-line decision making.

A systematic-review from China showed different side-effect profile for both, hard to say which is better. Amisulpride was cheaper.

In any case old drugs that were never approved are part of that "very little" I was referring to that fall through the cracks.

Not sure I'd call this one tragic though given that other countries also don't use it or limit access and there are good alternatives.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#404

Post by joak »

chroma wrote: post #381
citruscomputing wrote: post #323

Earlier quoted context omitted.

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)

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#405

Post by haldujai »

abeppu wrote: post #388
porejide wrote: post #378

Earlier quoted context omitted.

> This sounds like a recipe for killing people. Do you know what else sounds like a recipe for killing people? Not allowing people to access therapeutics that might save their life because it hasn't yet gone through regulatory approval yet for whatever reason (delays, too expensive to submit), etc. > There's very little that's approved by a non-US body and approved by the EU or non-OECD body that warrants clinical us…

> Do you know what else sounds like a recipe for killing people? Not allowing people to access therapeutics that might save their life because it hasn't yet gone through regulatory approval yet for whatever reason (delays, too expensive to submit), etc. Should we at least demand more specific criteria than "X _might_ save their life", like threshold of suggestive evidence? There will always be lots of stuff that hasn…

> Should we at least demand more specific criteria than "X _might_ save their life", like threshold of suggestive evidence? There will always be lots of stuff that hasn't been closely studied, the effects of which we can only partially describe.

We do, it's part of the FDA process and is determined on a case-by-case basis considering alternative treatments, disease course and intervention safety amongst other variables.

It's how the vast majority of stroke and novel cancer therapies are currently being approved.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#406

Post by bandyaboot »

dtech wrote: post #275
bandyaboot wrote: post #170

Earlier quoted context omitted.

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.

It explicitly states the passengers will be killed

Never has my lack of attention to detail cost so many lives.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#407

Post by CogitoCogito »

tremon wrote: post #363
CogitoCogito wrote: post #322

Earlier quoted context omitted.

> 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. 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 pati…

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”.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#408

Post by raygelogic »

I am so sorry for what's happening to this man, and I hope he finds peace in his last days.

the economics, ethics, and effectiveness around early approvals are really difficult to manage. companies have a strong incentive to get earlier approvals. but once the cat is out of the bag, it's hard to get it back in. if a sub-standard drug makes it to market and gains wide adoption, it makes later drug trials of more effective drugs really hard. where's the outrage for potential beneficiaries of better therapeutics?

I don't mean to say this man and others shouldn't get a chance at a hail mary when they're staring down death. just, it's risky business for others in the future. I hope the best for him and others.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#409

Post by theptip »

agumonkey wrote: post #105
tux3 wrote: post #3

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 the author says, no one ever blames the FDA for the people it failed to save. But approve something without the certainty that it isn't potentially going to kill someone, and there will be hell to your doorstep. Even if you want the experimental treatment, you…

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.

"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.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#410

Post by sgseliger23 »

haldujai wrote: post #398
HWR_14 wrote: post #387

Earlier quoted context omitted.

Are there conventional therapies that he has not tried that could be effective? It seems he has never had chemotherapy, but he implies at this point that's a long, almost impossible, shot.

It depends what you consider the outcome to be, by virtue of being a 39 y/o with early recurrent and possibly oligometastatic disease he is in the definitively palliative-intent treatment category so everything is a long shot. Really the best and only chance for curative intent with most cancers is radical resection with negative margins which unfortunately did not work here (most likely due to micrometastatic diseas…

Hey thanks for this post. You sound very knowledgeable.

Couple things: Jake’s SCC is non-HPV. He did Keytruda, and it had no effect. He’s being treated at the Mayo clinic where most of the oncologists were ambivalent about chemotherapy. He’s beginning platinum based chemo on Monday as a hail mary to try to kill this stuff.

And yeah — all the doctors have been flummoxed by the aggression of this cancer. It was the same when he had sarcoma twenty years ago.

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