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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

#271

Post by mlyle »

jasode wrote: post #251
mlyle wrote: post #210

Earlier quoted context omitted.

There's a lot of problems with it, though. Even if advancing medical research was the main goal-- ad hoc use in dying patients provides unclear data. Medical research wants clear inclusion criteria, metrics, reduced statistical noise from similar patients, predeclared outcome measures, and economies of scale in running trials. We already let terminal patients participate in medical research, but only inviting patient…

>There's a lot of problems with it, though. [...] Medical research wants clear inclusion criteria, [...] , but only inviting patients at times and meeting criteria that optimizes the research [...] But terminally-ill patients push for inclusion beyond this: to be dosed when there is not an active trial, [...] Your objections are sensible but that's beyond the scope of this author's argument. I'm just taking author's…

> I'm just taking author's following comment at face value

Plenty of mRNA human trials of cancer treatment are in progress. Indeed, as he stated, he wants into two that are underway, but that he is probably too far along for. He wishes that they had been greenlit even earlier and perhaps made their way to be approved drugs that he could just be given by his local doctor.

> For the situations where there's "no active trial" caused by the FDA not greenlighting the experiments,

There's compassionate use exceptions for circumstances like this.

The big thing is, there's two big bars to cross with getting a trial together:

- You probably want to be doing human research in a way that will produce evidence that will convince the FDA to grant you approval. (Hence, drug companies often are nervous that compassionate use will pollute their data).

- The FDA wants to protect human subjects, and if there's a drug that results in 15% survival for a year, vs. 5% for doing nothing and ???% for your new experimental treatment: they want that drug to be tested as part of a protocol that minimizes potential harms, not to randomly replace the 15% survival treatment. Most experimental treatments end up failing.

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

#272

Post by HWR_14 »

prmoustache wrote: post #29

The author seems to forget that entering a trial doesn't necessarily give you access to the treatment. You have as many chances to be in the control group receiving a placebo. And as bad, sad and frustrating as it sounds to someone in a desperate situation, it is for the greater good of many more human beings, protecting us from snake oil.

In serious (esp. life-threatening) situations, the placebo is, or is supplemented with, the normal course of medicine, not sugar water.

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

#273

Post by technick »

I feel somewhat closer to this person because I was once in his position as a child fighting a neuroblastoma in 1981 and some how my mother found a way to get me on an experimental list which saved my life. Half of the kids that took the drug died by the time they were teens due to heart failure, obviously I wasn't one of them, but am thankful for the chance to live a full life.

When the odds are against survival, there shouldn't be any rules limiting treatment, if it means even a slightly higher chance of winning. That's something our government has forgotten about or doesn't care about. If I was in this persons shoes, I would make it as personal as possible against those in control of the FDA. Show up at their houses, work, kids soccer practice, get in their face and let them see what their inaction is doing in person.

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

#274

Post by inconceivable »

civilitty wrote: post #142
exmadscientist wrote: post #133

Earlier quoted context omitted.

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…

> 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.

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

#275

Post by dtech »

bandyaboot wrote: post #170
pjot wrote: post #117

Earlier quoted context omitted.

MIT recreated this thought experiment to research the “morality” in autonomous vehicles. https://www.moralmachine.net/

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

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

#276

Post by tux3 »

haldujai wrote: post #245
tux3 wrote: post #232

Earlier quoted context omitted.

Trials are done in multiple phases, with a progressively wider population. There is a point where we consider a drug to still be unproven, but safe enough for human trials. I think that situations like TFA make a compelling case for selectively broadening access, for some drugs and some pathologies. The characterization of a choice between something proven and something with unknown values is too coarse and not a goo…

> While most new drugs indeed fail (the large majority of them), in diseases with very poor prognosis like OP's cancer, I think we would benefit from still looking at the tradeoff as a decision under uncertainty, instead of a complete unknown. Even with less data than we would otherwise want. Which is literally what just happened with osimertinib for NSCLC. It was approved for clinical use and was implemented without…

You're right that there are alternatives, and there is an existing standard of care. I don't think I'm ignoring that. Let me clarify, I am not saying that patients with poor prognosis are being offered nothing. They are being offered standard of care.

I think sticking with standard of care until new drugs have gone through the full, current process may be net negative under the current process, and considering the counterfactual especially for patients with poor prognosis.

Chemoterapy will buy some time with certainty, but in expectations broadening access even slightly means we can gain confidence in the experimental treatments that do work slightly sooner, and that improves the standard of care for everyone. Experimental drugs sometimes do work, and it would be bias to only look at the risks while sweeping aside the potential upside.

Consider what happens a few years from now with the current system and with a system that selectively broadens access in some cases, when the early data seems to support the risk/reward. Even if most new medications fail, the cost of delaying those few therapy that will happen to work is much larger than the risk being paid by the trial population. That's because only a few people participate in trials, but everyone benefits from the results. This is why we have trials at all.

In someone with an aggressive disease such as OP, that person may very likely benefit from having that choice. Today they may choose to buy some time with _relative_ certainty, knowing that chemo has very heavy side effects and that they may not enjoy very much of that remaining time. But they may not choose to try some experimental treatments, even when the risk/reward seems reasonable according to early data, even though that may result in a small chance of success, and certainly data that will help bring therapies quicker to more people.

The benefit of experimental treatment is not just to the individual participating in the experiment. Part of the benefit, that helps justifies the risk, is the idea that a fraction of the treatments will be worthwhile. Slowing down trials is safer in the sense that no one will be responsible for anyone losing their chance at chemo or dying, but it creates the exact kind of invisible deaths in expectation that TFA talks about.

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

#277

Post by HWR_14 »

jstummbillig wrote: post #212

This seems bad. Help me understand. In what ways does always letting individuals choose to take an experimental drug not work, if we make sure they know what is known and what is not? They are desperate, and that's a horrible place from where to make a decision, but dying is a really bad alternative. What are the pitfalls that would allow for this to not always be the option? How would this go more horribly wrong tha…

If it were for science alone, it might be fine. The problem is when Steve Jobs is sick and I walk up to him and sell him an experimental cure for $2,000,000,000. He can trivially pay it, but I have a huge incentive to lie. At a smaller scale, a more efficient conman can take all of someone's assets. And not just the dying person's. How many people wouldn't sacrifice everything to save a spouse's life or their child's?

The other concern is when you turn down medicine that might work for snakeoil that doesn't.

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

#278

Post by exmadscientist »

themitigating wrote: post #182
exmadscientist wrote: post #133

Earlier quoted context omitted.

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…

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....

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

#279

Post by olliej »

This is blaming the FDA for lack of treatment, not the recentness of the treatment.

That all the MRNA treatments they refer to are in trials tells you everything you need to know: we don't know which work, we don't know how effective they are, and we don't know what they work on.

It is possible to enroll in trials for these treatments, but as they say they "may" be denied as they're so far along. But that's what you want: if a trial takes someone on who would be highly likely to die even if the treatment works then depending on the trial size it's possible that that one patient might skew the results such that the treatment is denied, or alternatively, another person who applied for the trial gets denied even though they had a higher likelihood of survival.

I can understand it being incredibly hard for this guy, but we have been through the alternative:

* Snake oil treatments: drugs that do nothing but bankrupt people

* Actively harmful treatments: drugs that literally make things worse, while bankrupting people

* Paid trial scams: you can pay to be part of a trial, which immediately allows for the above two despite a regulatory environment that ostensibly requires trials.

etc

Things like the FDA exist in response to prior actions, and once they've existed for a while, people forget that the only reason that they don't seem necessary, is because they are there. Much like the "unnecessary" financial regulations that were removed, and immediately resulted in banks creating the Great Recession.

Hence, it is not possible for the FDA to create a "patients can be 'treated' with untested treatments" loophole that is not trivially exploitable by the kinds of people that resulted in the FDA existing in the first place.

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

#280

Post by Retric »

eilertokyo wrote: post #152
Retric wrote: post #102

Earlier quoted context omitted.

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 peo…

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.
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