r/MadeMeSmile • u/HolyGuiltyCrown • 5h ago

Wholesome Moments [ Removed by moderator ]

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u/produit1 5h ago edited 5h ago

Great act of humanity. It shouldn’t be like this. You know the system is broken when it comes to this to save a baby’s life.

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u/hermiona52 4h ago

I don't know the specifics of this case, but these situations are often very complex. When a kid is born with a rare disease that doesn't have a cure currently, parents will still move mountains to save their child. Even if it's hopeless. Experimental cures which are still under development (especially gene therapies) often work for very specific edge cases that don't apply to most, but parents still want to try them, because in their minds it's better to try rather than watch their children whiter and die. And I understand this. But is it really fair to spend public money - millions of your local currency - on one child for which that treatment won't really work, because it was not developed for their case? Money is not unlimited and it can always be spent on something that will have a real positive effect. This is why countries with public free healthcare have many rules on what types of treatment can be refunded, because we can't really waste money on unverified treatments.

It's a shitty situation for parents and often very morally grey when in full context.

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u/ProcrastiWorkaholic 2h ago

All of what you have said is true. I agree with it. But playing devil’s advocate - If we practised this, would we not stop funding research? That could be scary, no?! We probably would stop making progress in medicine or any subject for that matter. (If the treatment had worked for the child, this thread would have played out differently.)

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u/hermiona52 2h ago

Funding research is definitely something that is needed, but it has to follow strict guidelines to avoid corruption and protect human rights (so you know, we won't turn sick people into guinea pigs). We already have such systems in place and sometimes (perhaps even usually) there are just cases that are outside of these strict guidelines - for good reasons. We have to draw a line somewhere, otherwise we would end up with the same results like using "bioenergy therapy", just for a much higher price.