Not really sure why this is nefarious. I'd rather be treated than die. And if I don't think the side effects are worth it, then I'm still free to die. What does this have to do with malice?

Knowing about the diagnosis is itself the harm while there is no cure.

That is not at all related to my question.

Most people see it like you see it. Long experience suggests it's probably not worth making a good faith effort to explain further.

The possibility of safely doing whole body gene therapy is barely past experimental so it's hard to understand what you might be trying to explain (it's gonna be hard to cure a genetic disorder some other way).

Sure, an expensive drug to correct some issue with a protein is not the ideal solution, but it's just bizarre to cast something that represents tremendous progress as some kind of novel evil.

Wow, great answer. Why bother saying something unintuitive if you don't have the will to explain it?

treatment > cure

That's the equation for big pharma. Now tell me you don't see a problem with this.

If you don't, I will help, a treatment is more profitable. And you know what's even more profitable? Knowing that someone might need your treatment in the near future or far future. Because you can extract even more profit from the person.

Yes, this means that you would get screened early but it also means that your healthcare costs would be much higher compared to now where most people (apart from US) only experience healthcare costs when they become old. Business models for early payment of potential treatments to offset the costs (don;t think hn crowd, think real people with real, see low, salaries) would likely become a reality. Now imagine being super healthy but 1/3 of your salary goes out to accommodation costs and another 1.5/3 goes to this futurist version of healthcare. It would absolutely devastate most people. Remember most people don't make the high salaries most HN folks make, they live paycheck to paycheck with barely enough to make ends meet.

At this point, what's the point of working in cures when treatments are much better? This is like academics only working on original research, gets you a field where most of the studies cannot be replicated

The solution that's better is to die from it naturally. It's much preferred to side effects because??

No.

The solution that's better is "Actually get me healthy."

And once they have an expensive drug alleviating some of your symptoms while making them stinking rich, you are supposed to quit your bitching and be glad you aren't dead.

So if my insulin wasn't being produced, doctor told me, I should just die naturally instead of being grateful for insulin, because making someone rich is a greater sin? You're making very little sense.

As a society, the goal should be to make it so you don't need to pay some private company for insulin. Your condition would ideally be totally cured.

Instead, the current state of affairs (where they make a bunch of money off you) is a sort of local maximum and there is very little incentive to research a genuine cure unless such a thing would be more profitable than present day.

No, you're arguing in bad faith. It's obvious that that wasn't what the OP meant. Besides, the insulin graft is an excellent example of how in some countries people with a particular illness are just seen as dairy cows to be milked for every last cent: because life is priceless.

In a just world - not the one we live in - medicine would be produced like every other bulk molecule, because that's really what it is. Insulin could cost ~ what you pay for some other complex chemical. But because of patents and various graft protecting industry practices depending on where you live you may be overpaying by many orders of magnitude for something that could be quite cheap.

Society is not my personal piggybank for help. Being born with a health condition already makes it an unjust world. Being entitled to other people's work by your own metric of payment is also unjust.

the point is that in a fair world, the cure for your condition would eventually be found and produced but in your world, it wouldn't hence you will be paying more and more for healthcare as the number of potential conditions you could have grows

In a fair world I wouldn't be born with a condition, and I wouldn't be entitled to someone else's work.

Yes because just snap your fingers and you get cured easily of a genetic disease, sure

"they treat you forever" well I certainly hope so, given the alternative is snuffing out

(yes yes I'll be the ones to agree that companies and researchers can be hard headed sometimes, but that's not why diseases go uncured - life and biology is not a tiktok video)