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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

#81

Post by throw9away6 »

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…

I’m fine with that as long as insurance does not pay for any drugs without efficacy testing. Also no advertising of any sort.

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

#82

Post by maxbond »

dghughes wrote: post #73
maxbond wrote: post #59

Earlier quoted context omitted.

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.

It used to be regarded as a miracle drug that could be used over the counter in many circumstances, and as they looked into it they discovered it just couldn't be used safely.

That they've narrowed it down to some use case is more of a testament to the thoroughness of the investigation, I'm sure there are many chemicals that could treat leprosy this just happens to be the one we understand how to manufacture and when it is safe to use.

I'm sure it's very meaningful for the people who do take it, but that is what I meant by "basically worthless."

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

#83

Post by wbl »

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.

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.

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

#84

Post by Arainach »

gburt wrote: post #67
janeway wrote: post #48

Earlier quoted context omitted.

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 th…

The consequences to their actions are that when a doctor prescribes me a medication or when I purchase one off the shelf, I have incredibly high confidence that if I follow the dosage instructions it is safe - safe now, safe in 15 years, not worth further thought on my part. That hasn't been true in most places for most of human history.

The consequences to their actions are that millions of people are saved from the consequences of consuming seemingly promising drugs such as Thalidomide: https://en.wikipedia.org/wiki/Thalidomide

I could sleep just fine knowing that some people looking only at a tiny local example while ignoring the big picture considered me the villain

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

#85

Post by dghughes »

My Dad was dying of IPF and I was always on the hunt for anything that may help. Of course there are countless quack "cures" but I came across a study that said metformin may help. Metformin is what people with type 2 diabetes use to help to control blood lipids among other things. My Mom actually takes metformin since she has type 2 diabetes. My Dad's doctor wouldn't even discuss it and dismissed it outright.

Dad died in 2021 and I find it difficult to think metformin may have helped him live a more comfortable life. I know it's not a cure but the research seems to indicate a significant improvement for anyone with IPF taking metformin along with anti-fibrotic medications which Dad did take. We should have just used Mom's metformin really Dad had nothing to lose but it's hard to see that at the time.

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

#86

Post by tux3 »

dghughes wrote: post #73
maxbond wrote: post #59

Earlier quoted context omitted.

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.

That's true, though I'll note that treatment options seem to have broadened a bit [0]. Thalidomide is effective, but suffers from cost and limited availability (in addition to the teratogenic effects).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7413435/

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

#87

Post by EA-3167 »

causality0 wrote: post #80
EA-3167 wrote: post #69

Earlier quoted context omitted.

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 ap…

The key is that the approved treatments are proven to have the requisite efficacy, the risks that come with that are an acceptable tradeoff. The unapproved, often largely untested world of early breakthroughs doesn't have that guarantee of potential efficacy, it often JUST has risks.

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

#88

Post by anjel »

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?!

There are many divergent if not contradictory regulatory findings levels and limits between the US Canada and Europe. eg. Tolerable total cholesterol levels US:200 Euro: 240 (last I checked, these move around quite a bit. In the 70s the US banned Cyclamates as an artificial sweetener, but approved Sacharine while Canada approved Cyclamates and banned Sacharin. For Glaucoma treatment Europe is "Laser first, drugs second" while the US is Drugs first, laser surgery second. etc etc.

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

#89

Post by aantix »

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".

Everyone wanting the illusion of feeling completely safe.

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