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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

#101

Post by lettergram »

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…

I think what really drives me crazy is that the FDA approval can limit me taking something.

Put simply, If you believe “my body, my choice” then the current regulatory system is pretty messed up.

To be clear, I’m fine with the FDA existing as a labeling body. Sure label something FDA approved. But don’t limit what we can take because it’s not approved.

Otherwise, you end up with cases like this and many others, where an industry can easily be regulatory captured and ensure competitors are slow or unable to enter the market.

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

#102

Post by Retric »

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.

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.

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

#103

Post by tpmoney »

kepler1 wrote: post #22

I think the consideration that an article like this misses is the unintended consequences of speeding a process up / reducing the criteria for review, approval, etc. I think we can all see incidents of where some oversight process is loosened because of some legitimate desire to help some, but then you learn that the bad / incompetent / exploitative actors come out of the woodwork to test and take advantage of the ch…

>I think the consideration that an article like this misses is the unintended consequences of speeding a process up / reducing the criteria for review, approval, etc.

In general I feel like the sick should not be held responsible for the unintended consequences of things. The principle that it is better for 10 guilty men to go free than 1 innocent man to be punished applies here as well. How many suicides have happened because it took this long for the use of psychedelics and THC for the treatment of depression and PTSD to be approved (partially, in some places). How many people are suffering today, right now in pain or under the care of doctors they would otherwise leave for poor treatment but the "opioid crisis" has limited their access to the treatments they need? I've faced this problem personally more than once, and while I am sympathetic to the law of unintended consequences, I just can't be convinced that it is the duty of myself or my loved ones to suffer because someone else might abuse something. There is a balancing act to be had for sure, but any borderline case should ALWAYS err on the side of reducing the current actual harm in favor of preventing a nebulous potential future harm.

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

#104

Post by youssefabdelm »

There was a drug called Rapamycin discussed in this Radiolab episode https://radiolab.org/podcast/dirty-drug-and-ice-cream-tub

The drug supposedly helped delay the doctor's cancer and extend his lifespan until he stopped taking it, then it came back "with a vengeance" and he passed away. He wanted to stop taking it to verify whether it was actually working or not.

I wonder if it might help this person? He might have to be on it for life though.

Don't take my word for it though, this is FAR from my field of expertise.

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

#105

Post by agumonkey »

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.

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

#106

Post by EatingWithForks »

fallingknife wrote: post #93
melling wrote: post #21

Earlier quoted context omitted.

This has been a common complaint for decades. We always want to try rush experimental drugs/procedures that “show promise”. How often do these drugs, etc turn out to effective? 25 years ago we wanted to rush gene therapy and that didn’t turn out well. Someone died. It probably set back gene therapy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC81135/ I think the solution is to invest more into medical research now, t…

3 years ago we wanted to rush the COVID vaccine and it probably saved millions. I don't understand why we can't let people make risk reward judgments. Yes probably more people will die, but they were not forced.

The COVID vaccine already had an existing model to work from that was already ready to go and approved in the SARS-COV-1 vaccine nearly a decade earlier.

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

#108

Post by roflc0ptic »

unglaublich wrote: post #95
chroma wrote: post #34

Earlier quoted context omitted.

For those who are curious, the term was coined on this blog post[1]: > The Copenhagen Interpretation of quantum mechanics says that you can have a particle spinning clockwise and counterclockwise at the same time – until you look at it, at which point it definitely becomes one or the other. The theory claims that observing reality fundamentally changes it. > The Copenhagen Interpretation of Ethics says that when you…

So, you would flip the railroad switch to kill only 1 instead of 5 helpless people?

the math checks out

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

#109

Post by snitty »

There's a wild book from 2006 called Overdose (by Richard Epstein), that makes a more or less libertarian argument for deregulation of the drug industry. What the book misses is that before the FDA and the Pure Food and Drug Act is that anyone who thought they could make a buck by poisoning as many people as possible did exactly that. And, especially given the "tort reform" prevalent in red states, there is fairly minimal disincentive for corporations to kill people in the US.

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

#110

Post by sleight42 »

melling wrote: post #21
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…

This has been a common complaint for decades. We always want to try rush experimental drugs/procedures that “show promise”. How often do these drugs, etc turn out to effective? 25 years ago we wanted to rush gene therapy and that didn’t turn out well. Someone died. It probably set back gene therapy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC81135/ I think the solution is to invest more into medical research now, t…

Just "invest more"?

Who does the investing? Not "The Market". The incentive isn't to cure but to treat. The Market wants (repeat) customers.

The government? At least, in the US, we've been dismantling the government's ability to do this since at least Reagan. Even our so-called Liberals aren't pushing hard here. You'd have to look to the "fringe" Progressives within the Democratic Party to even come close.

And why? Because "fuck you, I've got mine" may as well be the national motto of the USA at this point.

People will bristle at this, certainly. Look at Biden: he's done so much!

Biden is no FDR. We need a real social safety net in this country. And, yes, we need a "right to try", even if it means waiving malpractice rights in those cases.

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