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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

#191

Post by morelisp »

dghughes wrote: post #73
maxbond wrote: post #59

Earlier quoted context omitted.

If you think the fact that thalidomide, a deadly and basically worthless medication, being successfully blocked by the FDA is an example of a problem, then I'm a bit baffled? If you think that regulatory bodies make mistakes - then surely you want them checking each other's work? It's very frustrating to feel you are dying just shy of a breakthrough that can save you. I get that. And the author's contention, that the…

> thalidomide, a deadly and basically worthless medication, Thalidomide is what is used to treat erythema nodosum leprosum (ENL) better known as just leprosy.

It's not been recommended in decades.

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

#192

Post by MostlyStable »

jfk13 wrote: post #186
valine wrote: post #125

Earlier quoted context omitted.

Just because a treatment doesn’t work doesn’t make it snake oil. Snake oil implies intent to deceive. Untested drugs can be based on a strong theoretical foundation and still not work. I expect the majority of experimental treatments won’t work. We should be trying regardless, not just for the sake of the people taking the treatment, but for the countless people in the future who can benefit from the same treatment w…

And how do we assess whether "someone understands the risk"? Often, I suspect nobody really "understands" the risk of some minimally-tested, experimental treatment.

This is a fully generalized argument against personal autonomy.

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

#193

Post by haldujai »

GuB-42 wrote: post #154
sleight42 wrote: post #110

Earlier quoted context omitted.

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? B…

> The incentive isn't to cure but to treat. The Market wants (repeat) customers. I am fed up with this argument. Compared to a recurring treatment, a cure will: - destroy the competing recurring treatment - sell particularly well initially, when you still have the patent, potentially at a high price - not stop the influx of repeat customers, since as long as people are alive, they will need medicine, and people who a…

Agree. I can speak for oncology where the desire is always curative intent treatments. Unfortunately it’s often not possible so we settle for palliative therapy (presumably what GP meant by recurring).

Personally/professionally I think this argument comes from non-experts failing to understand the disease process and therapeutic challenges. I’ve seen no evidence or suggestion in my years of clinical practice that this assertion has a shred of truth behind it.

> If that argument was true, no one would do vaccines, especially considering that most vaccines are not particularly expensive.

While I agree with you this statement does not prove your argument. Vaccines aren’t a good example of funding for curative intent treatments.

The economics behind vaccinations are different as you vaccinate orders of magnitude more patients than would ever get the disease so even if the nefarious assumption is valid the economics may still favor this path.

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

#194

Post by robbintt »

lr4444lr wrote: post #28
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…

The FDA could create a standard consent form for nonapproved treatment that patients and doctors would sign, which would indemnify the physician from legal repercussions, but they don't, and they bear full blame for that. The AMA would still have its own regulations about the limits of ethical experimentation, with the revocation of a medical license as punishment to serious offenders, and malpractice safeguards coul…

This can cause all doctors to require it, and this has happened across industries, for example, software and internet platform "terms of service". It is a very bad idea.

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

#195

Post by User23 »

GuB-42 wrote: post #154
sleight42 wrote: post #110

Earlier quoted context omitted.

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? B…

> The incentive isn't to cure but to treat. The Market wants (repeat) customers. I am fed up with this argument. Compared to a recurring treatment, a cure will: - destroy the competing recurring treatment - sell particularly well initially, when you still have the patent, potentially at a high price - not stop the influx of repeat customers, since as long as people are alive, they will need medicine, and people who a…

Gilead’s hepatitis cure is a real example of this[1], so it’s not some hypothetical. The sales plummeted and wall street dinged them for it.

[1] https://www.investors.com/news/technology/can-gilead-withsta...

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

#196

Post by swayvil »

abhaynayar wrote: post #77

I read this, and while I felt immense sadness, I will obviously move on with my life soon enough and forget about it. I wondered, if I were ever in the same situation, and someone read what I wrote before dying, they might empathize for a bit, but then they'd move on as well. I just really wish that there's something beyond death, that there's something out there, and that all the suffering and unfairness and randomn…

Our salvation is in psychedelic drugs. I'm serious.

There is no cheaper way to turn swine into gentlemen.

Now we just need to trick them into eating the stuff.

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

#197

Post by serial_dev »

can16358p wrote: post #173

There should be a universal law in human rights stating anyone can take anything into their own bodies and governments can never, ever prevent them. Governments/regulators deciding what you can put into your body is beyond ridiculous: applies to all substances and drugs. Inform about the potential risks and effects: sure. Prevent: never.

Should be, yes, I agree, however, we are extremely far from this, I don't even know how many hours I would need to travel to legally buy and smoke a pack of menthol cigarettes.

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

#198

Post by MostlyStable »

lucianbr wrote: post #187
dionidium wrote: post #156

Earlier quoted context omitted.

> 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 options want those too, because nobody wants to go through chemotherapy or whatever. I reserve for myself the right to try to save my own life, even if that means some people who can't handle that responsibility make things worse for themselves. I can't get from, "but other…

You say this now, but after your son, sister or mother dies after choosing snake oil, you will likely not say "I accept that they chose wrong and that's all there is to it". You will cry bloody murder and blame the system that didn't protect them from the snake oil salesmen, and demand that something be done. Well, I of course don't know what you personally would do. But some people would do this, and it turns out, a…

I agree with your description of reality. That doesn't mean that we have to accept it or say it's ok. It may be politically infeasible for the suggested policy (allowing people to choose treatments even if some people _will_ choose unwisely), or, if enacted, it may be impossible to keep it. But I will continue to advocate for it anyways. I believe in and advocate for _many_ policies that I have close to zero hope will ever be enacted.

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

#199

Post by nine_k »

sleight42 wrote: post #110
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…

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? B…

Indeed, there's the perverse insensitive to create a repeat customer.

Funnily, an insurance company would push against that, for a final cure. They would like to avoid to pay for repeat treatments.

But the medical insurance in the US is more of a payment scheme, and apparently is not interested in paying less. I bet there is some regulatory loophole, or a government guarantee, that makes it more profitable.

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

#200

Post by can16358p »

hotpotamus wrote: post #181
can16358p wrote: post #173

There should be a universal law in human rights stating anyone can take anything into their own bodies and governments can never, ever prevent them. Governments/regulators deciding what you can put into your body is beyond ridiculous: applies to all substances and drugs. Inform about the potential risks and effects: sure. Prevent: never.

I mean, fentanyl? Obviously it's a whole subject that could be unrolled/debated, but I don't have any interest in doing that today. Really, I thought I'd just point out one interesting and often unknown aspects of US/State law (assuming this is mostly a US-based forum; I know you said universal human right) - taking drugs isn't a crime anywhere that I'm aware of. Possession of them certainly is, but just having taken…

Yeah.

It should be legal too. I'm not defending the use of it in any way, this is not about drugs but a more fundamental problem: governments deciding what you can and cannot put into your own body.

They should inform people about potential dangers and effects of substances, and try to prevent the underlying reasons for people to, say, do heroin or fentanyl.

But if someone wants to do it anyway, making it illegal just makes things worse as people will be stigmatized socially where they should be welcome/accepted the most, and they'll obtain the substance illegally and dangerously (who-knows-what-it's-laced-with and exact actual dosage) anyway.

So just inform and support the people but make it legal and relatively safer to consume for harm reduction.

But if someone wants to OD and kill themselves, I mean, it's sad but it's their own body and their own life.

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