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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

#91

Post by peter422 »

janeway wrote: post #58
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.

To note, the placebo group is typically getting the best current existing treatment. Rather than nothing. Although in some cases the best treatment is still nothing, which sucks.

It is against medical ethics for the placebo not to be the current standard of care, and experimentally it must be… If you can’t beat the current standard of care then your drug isn’t effective.

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

#92

Post by bruce343434 »

baggy_trough wrote: post #52
strangescript wrote: post #39

There is no 100% correct answer here. As soon as you speed up the process, there are still going to be people that just miss out, and then we will have people saying 4 months is too long, it should take 2 months, or let AI approve it, etc. Desperation skews perspective. The issue with having a standardized approach to people getting experimental drugs is it opens up its own kind of mini-market unless the implication…

[flagged]

...why?

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

#93

Post by fallingknife »

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…

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.

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

#94

Post by maxbond »

wbl wrote: post #83
maxbond wrote: post #27

Earlier quoted context omitted.

Thalidomide was widely approved, and I'm glad the FDA didn't rubber stamp it.

The FDA can approve a new drug in under a year as we saw with covid vaccines. Every time an effective drug is made and they don't people die waiting.

They approved one drug in under a year in a literal emergency (and it's deeply controversial that they did even that). That doesn't mean they can do that with everything that crosses their desk.

I do buy the author's assertion that people should have right to expose themselves to experimental medicines when it could save their lives though.

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

#95

Post by unglaublich »

chroma wrote: post #34
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…

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?

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

#96

Post by vore »

aantix wrote: post #89
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…

There's this overabundance of the need for safety that's overcome society. It's as if we can't assess tradeoffs anymore. You see it with the lack of children playing outside - even though random kidnappings are almost a nil risk and that they're more likely to get by a car. Defective toys. Defective carseats. Millions get recalled for a failed few. You saw it with masks. You see it with speech, "words are violence".…

Uhh, given recalling defective toys or car seats is a pretty straightforward way to prevent further injury, isn’t that a pretty good trade off over knowingly potentially causing more injury just to save money?

How would you feel if your child was injured by a car seat that had a defect the manufacturer completely knew about but refused to recall for the sake of saving money?

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

#97

Post by torstenvl »

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.

I agree. Dying in anguish at the hands of your own government is far worse than dying having tried everything you could.

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

#98

Post by theflyingelvis »

maxbond wrote: post #27
tb_technical wrote: post #6

What I don't understand is why the FDA doesn't automatically rubber stamp approvals on medicine approved in Canada and the European Union. We all know their medicine is good - so why can't I get it?!

Thalidomide was widely approved, and I'm glad the FDA didn't rubber stamp it.

I take a derivative, Lenalidomide, for cancer maintenance. I am very glad the FDA approved it.

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

#99

Post by zaroth »

adrr wrote: post #50
lr4444lr wrote: post #28

Earlier quoted context omitted.

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…

You can get get experimental drugs/treatments that aren’t approved by getting them under the clinical trial for that drug. The question is who pays for it? Cancer treatments are millions of dollars.

Clinical trials are, I think always, free for the patient. The company developing the drug foots the bill.

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

#100

Post by duxup »

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…

One issue is, who pays for it?

Experimental treatments often are very expensive, I believe require a lot of study of the patient and so on ...

It's not like a magical pill(s) you take an go home and live or don't and everyone says "well he consented so he took his chances". The entire process of experimental treatments is hugely expensive.

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