I'm sorry this is happening to you. Thank you for fighting to improve SCC outcomes for yourself and others. Please keep us updated with your progress.
I am dying of squamous cell carcinoma, and potential treatments are out of reach
31–40 of 486 posts
Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach
#32Regulators 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 continue to cause to others.
FDA delenda est.
Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach
#33If we block someones ability to try novel procedures, how is that any different from blocking their right to assisted suicide?
I think guaranteed death is much more different than potential death and potential cure.
It's a tough line to walk on, still.
Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach
#34There 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 observe or interact with a problem in any way, you can be blamed for it. At the very least, you are to blame for not doing more. Even if you don’t make the problem worse, even if you make it slightly better, the ethical burden of the problem falls on you as soon as you observe it. In particular, if you interact with a problem and benefit from it, you are a complete monster. I don’t subscribe to this school of thought, but it seems pretty popular.
The post provides real life examples of government programs, nonprofits, and individuals being criticized for helping in the “wrong” way.
1. https://web.archive.org/web/20210125231725/https://blog.jaib...
Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach
#35What 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?!
I guess we know that, but why doesn't the EU rubber stamp medicine that's approved in the US? In my opinion it's actually good for there to be independent bodies reviewing things.
Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach
#36If we block someones ability to try novel procedures, how is that any different from blocking their right to assisted suicide?
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.
Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach
#37There 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…
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. Their families are desperate, often their doctors are desperate. That doesn't mean that their remaining life doesn't have value though, or that cutting it weeks, months or years short isn't a problem.
I think that's often lost on people, and in a more frightening way, people who are all-to-eager to use the terminally ill as ultimately disposable test subjects for unproven treatments. If it was JUST down to safety then I could see the point to an extent, but as you said efficacy is a big open question too. Of course if you're facing death then you may well want to roll the dice, but the question there too is how well you really understand the odds. The understandable implication in a lot of the discussions around this issue is that if only regulators were a bit faster, people like the author wouldn't die.
The reality is grim though, most of these experimental drugs and therapies are not effective, regardless of whether or not they're safe.
Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach
#38What 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?!
[deleted]
Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach
#39There 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 is they would be required to be free by law. And desperation is not the right mindset to make law or rational decisions.
Not trying to sound heartless, its just not as easy as saying "go faster".