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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

#61

Post by timmytokyo »

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.

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%.

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

#62

Post by tqi »

> think how bad it will look that we approved the drug so quickly

The media (both traditional ans social) owns a large chunk of the underlying blame, due to their rush to create simplistic narratives in the wake of anything that "goes wrong" without nuance or examination of tradeoffs.

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

#64

Post by causality0 »

EA-3167 wrote: post #37
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…

People are, perhaps understandably, very eager to advance at a faster pace, always a faster pace. Nowhere is that more evident than in the case of people facing death regardless, but in addition to the issues you raised (early failures can lead to even worse delays) there are other ethical concerns. Terminally ill people are often understandably desperate, and I would be too in their position, no doubt about it. Thei…

We let people have assisted-suicide for reasons from homelessness to hearing loss, twenty thousand people a year. Why do we respect their self-ownership when they're trying to die but not when they're trying not to die? Why do we get to decide what is and isn't worth the risk?

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

#65

Post by YZF »

Glawen wrote: post #30
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?!

Because it then becomes a kind of race to the bottom, where all manufacturers will approve medecine in the easiest country, a bit like flag on convenience for ships

They already do that. Having approval and data in another country makes it much easier to get FDA approval. But it's still a lengthy process, costs a lot of money, and often puts you in competition with other options that are approved. There are drugs that have been used for decades in Europe, are perfectly safe and proven to be more effective, and are not available in the USA (and likely the other way around, I'm just aware of specific examples there).

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

#66

Post by lr4444lr »

latchkey wrote: post #16

If we block someones ability to try novel procedures, how is that any different from blocking their right to assisted suicide?

A steel-man response would be that assisted suicide is more about pain reduction, whereas experimental drugs could have terrible side effects.

It isn't a convincing argument to me, because possible death avoidance is a higher level of morality to me, but harm reduction is extremely prevalent in medicine as a driving factor.

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

#67

Post by gburt »

janeway wrote: post #48
gburt wrote: post #32

Regulators are, in general, too sheltered and disconnected from the impact of their actions. Incentives matter. When you get to make decisions that impact others, but not feel any of the costs associated with that, you do not have the correct incentives. I hope the staff of FDA read this and can’t sleep tonight. We can hope they feel some emotional pain, even if it is only some small subset of the pain they have and…

I would disagree with this. Regulators that I have worked with in US and EU knew what it meant. Maybe not the most amazing technical people I’ve ever worked with, but they were as competent as any random sample of pharma/tech types. Their jobs is to verify that you have completed all the valid documentation to demonstrate that your drug does what you claim it does. Their opinion on personal emotions are irrelevant. T…

I understand some people are checking boxes, with no space to consider their impact. Please generously reinterpret my point to extend to their management stack and the political establishment that is responsible for the system.

Those who establish, support and tolerate that system should be as directly exposed to its consequences as practicable. It is good for them to see these stories and feel the consequences of their decisions.

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

#68

Post by _Algernon_ »

latchkey wrote: post #36
kif wrote: post #33

Earlier quoted context omitted.

I think guaranteed death is much more different than potential death and potential cure. It's a tough line to walk on, still.

The only guarantee in life, is death.

...and taxes.

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

#69

Post by EA-3167 »

causality0 wrote: post #64
EA-3167 wrote: post #37

Earlier quoted context omitted.

People are, perhaps understandably, very eager to advance at a faster pace, always a faster pace. Nowhere is that more evident than in the case of people facing death regardless, but in addition to the issues you raised (early failures can lead to even worse delays) there are other ethical concerns. Terminally ill people are often understandably desperate, and I would be too in their position, no doubt about it. Thei…

We let people have assisted-suicide for reasons from homelessness to hearing loss, twenty thousand people a year. Why do we respect their self-ownership when they're trying to die but not when they're trying not to die? Why do we get to decide what is and isn't worth the risk?

Because they're trying to die, they're literally getting what they want, guaranteed. Having said that I don't agree with assisted suicide for the reasons you listed. Either way it's not as though people seeking death are being mislead as to the odds, are engaging in desperate reasoning that they'll be the lucky ones who get to live a bit longer.

You offer someone death, they get death.

This is about people desperate for cures and treatments that probably won't work, and may well give them the opposite outcome from what they hope for.

There is a difference in kind.

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

#70

Post by gumby »

This quote sounds like self interest in the article, but there is more to it:

> If anything goes wrong,” he argued, “think how bad it will look that we approved the drug so quickly“

People who take an approved drug are relying on the result and authority of a scientific process — across all drugs. Some scary results and people may start to fear the process, which may end up killing more people.

That said I’m sympathetic to his plight and think that he sounds like a candidate for the compassionate use program. Any result would not help approval as who in such a program would volunteer to be randomized into a placebo arm? They’d just plead in a prior human administration disclosure section of any NDA.

(Also, pragmatically, immunotherapy grate nets are customized and extremely expensive. Who will underwrite it? Not the drug company who would have nothing to gain, not the insurance company, and I doubt the patient could afford it).

It’s a sad story all around.

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