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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

#71

Post by devwastaken »

When a gov org cares about how it will "look" over wether it kills you - you live under tyranny.

A common example why government doesn't solve problems well. Because it's an absolute governing law, there's nowhere else to turn to. This creates an industry of snake oil that preys upon people both as regulated medicine and homeopathic remedies. In practice vertical integration is a requirement for economies of scale. This means all medicines must be created by singular centralized corporations. These corps buy out the regulatory and now we have an incredibly inefficient and locked out market that prevents innovation.

All orgs should be sunset after 20 years by law. Repeal the FDA, replace it.

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

#72

Post by A_D_E_P_T »

There's a very easy regulatory solution: Roll the drug approval process back to the way things were done prior to 1962. Back then, safety testing was all that was required. Efficacy testing -- which is difficult, expensive, arguably unethical in itself, and in some cases effectively impossible -- was not required. Drugs cost ~20-50x less to bring to market, and were brought to market faster. Indeed the 40s and 50s are still known as the pharmaceutical industry's "Golden Age." And it wasn't only because of low-hanging fruit.

Pair this paradigm with extensive postmarketing surveillance and periodic reviews for efficacy in a patient population. These could be done at two years, five years, and eight years -- and approval automatically rescinded if safety issues arise or efficacy is close to null.

Give people with fatal diseases a "right to try" drugs that haven't passed safety testing -- and use that data.

Ban drug advertising in public-facing media.

Simple as.

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

#73

Post by dghughes »

maxbond wrote: post #59
chroma wrote: post #41

Earlier quoted context omitted.

But that’s the problem. No regulatory body has perfect judgement, so they’ll all approve some harmful things and ban some helpful things. If you’re so strict that you don’t allow thalidomide, you’ll also ban stuff like beta blockers for an extra decade, causing 80,000 deaths. The argument in favor of loosening restrictions is that it would reduce overall death and suffering.

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.

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

#74

Post by amanaplanacanal »

banana_feather wrote: post #8

There are "right to try" laws both Federally and in 40+ states. It's unfortunate the author doesn't address those, I'm curious how they interact with his case.

It appears that he is in New York, which doesn’t have a right to try law on the books.

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

#75

Post by gabea »

There is a clear problem, and a good idea here. (i.e. Right to Try) What needs to happen to make this move forward?

I am getting so mentally exhausted learning about a specific problem, and then experiencing the helplessness of not knowing how to push on driving towards some mutually agreeable resolution.

Add in the fact that there is no way to seemingly coordinate the push towards a resolution. Individuals taking action without coordination feels just the same as taking no action at all. Are there any tools to coordinate the push and keep track of progress?

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

#76

Post by TheRealPomax »

A_D_E_P_T wrote: post #72

There's a very easy regulatory solution: Roll the drug approval process back to the way things were done prior to 1962. Back then, safety testing was all that was required. Efficacy testing -- which is difficult, expensive, arguably unethical in itself, and in some cases effectively impossible -- was not required. Drugs cost ~20-50x less to bring to market, and were brought to market faster. Indeed the 40s and 50s ar…

The world "simple" is doing so much heavy lifting here, it might as well be written as ______ instead.

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

#77

Post by abhaynayar »

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 randomness in life is not for nothing. I hope we someday truly figure out what the fuck we are doing here in this universe. And if not that, at least we reach a point in biology where we have the ability to solve a lot of problems of the mind and body and make life better for everyone.

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

#78

Post by Arainach »

timmytokyo wrote: post #61
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%.

The probability of a more painful death is also greater than 0%. So it the probability that something could go wrong and cause publicity which would interfere with the testing or approval of the drug and affect other people's access in the future*. There are always tradeoffs.

*this person takes the drug. Two days later they die of a heart attack. Was it caused by the drug? How many resources should be spent to determine that? Should that death be listed in the potential side effects? What if the news story publishes an article and scares people off from the trial? What if it's later proven that the drug had no effect on the heart attack but the distraction from it delayed 10,000 people's access to the drug?

The world is complicated.

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

#79

Post by woodpanel »

Things don't happen in a vacuum. It’s understandable that people want access to the experimental medicine for themselves or their loved ones when the fear of god has been put into them. When one has nothing to loose, what’s there to loose?

Unfortunately it’s our dignity (or at least others diagnosed with „x remaining months“). As soon as this becomes normalized, the moral impetus will change that those wo didn’t make it, probably weren’t brave enough to try the new stuff.

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

#80

Post by causality0 »

EA-3167 wrote: post #69
causality0 wrote: post #64

Earlier quoted context omitted.

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…

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

This applies just as much to approved treatments as unapproved, for the same reasons, and has the exact same solutions such as having a third party with no vested interests explain to the patient. In fact it has those problems less than approved treatments because the companies are being paid by the insurance company for the approved treatments but not the experimental ones.

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