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by skissane 924 days ago
> What a weird system: there's something better, but the manufacturer isn't allowed to tell you about it.

It is the way medicine works – not just in the US, in most countries worldwide. Not just about gene therapy, about all drugs and devices.

The FDA and its international equivalents (the EMA in the EU, the TGA in Australia, etc) regulate the manufacturers, not the clinicians. They control what the manufacturers sell and even what the manufacturers are allowed to say about their products (in product packaging, prescribing information, advertisements and marketing collateral). They don't control what the treating clinicians do with those products – to the extent that is regulated, it is the job of other regulatory agencies (e.g. professional licensing boards, civil courts hearing medical malpractice claims, etc)

> What if they, like, slide the journal article across the desk, whilst holding their finger alongside their nose and winking?

What they'll do instead: there will be a conference where (among other things) the journal article author will present their findings/recommendations, and the manufacturer will sponsor (and hence help pay for) the conference. They never actually said anything, they just made sure you were there to hear about it.

I'm not a doctor but my mother is. When I was a teenager, she'd be invited to these free dinners at fancy restaurants paid for by pharmaceutical companies, and a couple of times they allowed her to take me along (she was allowed to bring her spouse/partner to some of them, so she just asked "can I bring my teenage son instead"?). During the dinner, some academic would do a presentation on their research into how wonderful one of the company's drugs was, and also do some Q&A. So the manufacturer wasn't technically saying anything, everything was said by some academic (whose research they were funding). I didn't understand it all, but I found it rather interesting. Still didn't follow her footsteps into medicine though (although my younger brother has).

But, she tells me the regulators have cracked down on free perks from pharmaceutical companies, so they are forced to be a lot less generous nowadays than they were back in the 1990s. (This is not the US though, this is Australia.)