I am dying of squamous cell carcinoma, and potential treatments are out of reach • Hacker News Board

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

#11

Post by Arainach » Sat, Jul 22, 2023, 4:55 PM UTC

changoplatanero wrote: post #4

I get that the FDA is bad but how come there is no country anywhere on earth where these treatments are legal and available?

The FDA is not bad. The world has never had a shortage of liars, scammers, or snake oil salesmen. The term snake oil itself hearkens back to salesmen who would promise "medicines" to desperate people to con them out of their money.

Allowing trials to be bypassed and allowing people to pay for early access to unproven drugs would bring a flood of such be vendors and be bad for society, bad for medicine, and bad for ethics.

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

#12

Post by dr_dshiv » Sat, Jul 22, 2023, 4:55 PM UTC

I really sympathize with the author and feel his position has great moral clarity.

Wish there was some country or state where you could try more freely.

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

#13

Post by pstuart » Sat, Jul 22, 2023, 4:56 PM UTC

This could change if there was enough political pressure. Easier said then done, but it should be done.

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

#14

Post by riffraff » Sat, Jul 22, 2023, 4:56 PM UTC

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…

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 options want those too, because nobody wants to go through chemotherapy or whatever.

Medical authorities have a shitty job.

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

#15

Post by user_7832 » Sat, Jul 22, 2023, 4:58 PM UTC

I wonder - both in this specific case, and in general - if anyone here on HN has enough media/political reach to spread this message.

This case reminds me a lot of the FAA realizing that safety restrictions for toddlers would increase deaths as more people would drive. (https://www.ntsb.gov/news/events/Documents/child_safety-Clau..., https://www.ucsf.edu/news/2003/10/97119/airline-infant-safet...)

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

#16

Post by latchkey » Sat, Jul 22, 2023, 4:58 PM UTC

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

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

#17

Post by tekla » Sat, Jul 22, 2023, 4:58 PM UTC

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?!

> USA rubber stamps probably safe food items. Europe goes WTF how dare they think its safe.

> USA refuses to accept rubber stamp European experimental medication. Europe pikachu face

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

#18

Post by adventured » Sat, Jul 22, 2023, 4:59 PM UTC

etothepii wrote: post #7

changoplatanero wrote: post #4

I get that the FDA is bad but how come there is no country anywhere on earth where these treatments are legal and available?

This is a very interesting question. Why are medicines regulated federally? As I understand it (and IANAL) doctors, pharmacists and nurses are regulated on a state by state basis.

It would be an extraordinary disaster to kick that regulation back to the states.

Florida would probably outlaw all mRNA technology. Their FDA would refuse to approve any mRNA-based therapies, and so on.

We have seen the disaster that approach can cause in healthcare, insurance, abortion (reproductive health broadly), gay rights, etc. It's insane that we have state by state drivers licensing as an example that is merely highly inconvenient.

It's not a good thing that doctors and nurses are regulated at the state level. It's a horrible thing that contributes to the US healthcare system's vast dysfunction.

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

#19

Post by LordShredda » Sat, Jul 22, 2023, 4:59 PM UTC

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 they might make mistakes? See: thalidomide

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

#20

Post by [deleted] » Sat, Jul 22, 2023, 4:59 PM UTC

dr_dshiv wrote: post #12

I really sympathize with the author and feel his position has great moral clarity. Wish there was some country or state where you could try more freely.

[deleted]