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

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

#141

Post by peyton »

yladiz wrote: post #122
nine_k wrote: post #112

Earlier quoted context omitted.

I'd say that people should be allowed to try whatever treatments they agree to have, in order to save their lives, and also in other cases. One cannot say with a straight face that a woman has sovereignty over her body and thus contraception and abortions should not be banned, and preclude that same woman from getting a treatment that can possibly save her life but has not been approved yet.

C’mon, it’s extremely disingenuous to compare abortion and contraception with untested treatment.

It’s unfair to call treatments untested. Medications are tested extensively. The FDA could work with sponsors to come up with a range of risk profiles and expand access.

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

#142

Post by civilitty »

exmadscientist wrote: post #133
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…

To sibling commenters: immunotherapies aren't the only problem. There are a ton of truly evil companies out there pushing therapies that do not work, have never worked, and will never work, because they literally have no possible mechanism to ever do anything . This is a crime, but it's very very hard to prove. And these companies get very good at gaming the system, because that is their product. They are mechanisms…

> First, people die because they choose a truly worthless treatment that can never work, over bad ones that at least had a snowball's chance.

Like Steve Jobs.

Fruit juice kills people.

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

#143

Post by xk_id »

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…

Holy christ how did AI make it even in this conversation!?!

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

#144

Post by I_Byte »

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…

Let us say that there is nothing beyond death, does that really mean that life is ultimately pointless? I'd argue that the idea that there is nothing beyond death is what makes life all the more meaningful. We are only going to get one shot at all of this, we better make it count.

From this I derive the motivation to work hard at what I do and ultimately try to contribute to the problems we face as a species before I pass. It also makes me appreciate the raw human connection that we can all experience: love, passion, friendship.

I may not be the one to light the altar of discovery that allows us to say, cure cancer or become a spacefaring species, but I will proudly carry the torch and pass it on.

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

#146

Post by jasode »

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…

>I think the solution is to invest more into medical research now,

The author is arguing that terminally ill people (with a few months left to live) -- like him -- would be willing participants in trials to help medical research. They already know that mRNA drug or whatever likely won't cure them. It's possible some new scientific knowledge of the drugs' effects can still be gained even when it doesn't cure them.

Given the realistic odds, the primary purpose (from society's perspective) of letting of terminal patients participating in unproven drug trials would be medical research rather than "Hail Mary cures". From the patient's perspective, of course they hope it improves their health.

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

#147

Post by yieldcrv »

blcknight wrote: post #54
yieldcrv wrote: post #46

Earlier quoted context omitted.

> Even if you want the experimental treatment, you cannot get it. fortunately, Baja California seems to have everything. Or specifically, a different drug approval strategy that is right in the middle of this. The FDA's main limitation is that it gives a one to one relationship in approvals. A substance is seemingly evaluated for a single narrow ailment. While evaluation process is a threshold of side effects as well…

Off label prescriptions are legal and very common.

huh thats exactly what google says.

you’re right though, I think this is still limiting as it gets to currently obscure things, liability concerns for the physician if something goes wrong, or what insurance will cover. so its still hit or miss for the patient

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

#148

Post by inhumantsar »

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 with you but I also understand the argument that being given the choice between certain death and uncertain death is a form of coercion

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

#149

Post by maxbond »

wbl wrote: post #131
maxbond wrote: post #94

Earlier quoted context omitted.

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.

Why doesn't it mean that?

Let's say I give you 10 tasks. You're going to have to go back and forth with external stakeholders, and a given task will be blocked much of the time waiting for a response. So you can do each of them concurrently, but it's gunnuh take a year to do each of them.

But the next day I come to you with an 11th task. I tell you this is the only one that matters. I give you full license to blow through your budget, harass people until they get their paperwork done, whatever it takes - this is the only priority. So you get right to work, and with all the blockers cleared you get it done in 6 months.

"Great," I say, "so you can do all them that fast right? And when I come back in 6 months, all of the original 10 tasks will be done?"

But of course they won't be, because you don't have the resources you had before, the external stakeholders aren't as motivated as they were before, and instead of putting all your effort into 1 task you're going to be spreading it across 10.

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

#150

Post by [deleted] »

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…

[deleted]
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