alt Hacker Newswell, you didn't answer the question, but it sounds like you are saying $40,000? how much do you think Orchid costs? do you think it even works?
$40,000 cap would exclude all the therapeutics targeting rare disease being developed today. not just pediatric. all. it would exclude tirzepatide, which costs $250,000 to $400,000 for most people. if you want to cure obesity. and by the way, congress expressly banned paying for all weight loss treatments from medicare.
> Newly pregnant friends are spending $$$ on tests in utero to weed out children with such things.
do you think pregnancies at age 40 compared to pregnancies at age 20 are more expensive, or less expensive? define expensive, yes? and what price should the government pay? should it pay 40 year old mothers different than 20 year old mothers?
it's too bad that i'm being downvoted, since you're engaging with the question and hopefully it is really illuminating why there are no easy answers to capping healthcare costs. it starts with people, especially people who think of themselves as being very smart, being unable to specify a max price they are willing to pay, which is conceding that a market-based solution can exist but be very deeply flawed.
Because I don't think there is a max price. Like of course there is in practice case by case because individuals don't have infinite money but nobody wants to be told "sorry, we can treat your condition but we're not going to because you're not valuable enough to society to get it." The episode Critical Care in Voyager muses on what such a system looks like formalized and it's awful.
And I think what makes it so that we're resistant to caps is because it's not just rare diseases you could write off as unlikely to ever get that are ruinously expensive and it's likely that in everyone's social sphere they know multiple people personally who've had "blown out their out of pocket max by factors of 5-10x" medical issues. It's a this really can happen to you thing.
So I think if your goal is to reduce healthcare costs on a nation scale your only option is make it so your people develop health problems less and tackle the smaller but much much much more frequent expenses. Things like ending the caps on the number of doctors, giving nurse practitioners full prescribing rights, moving more medications OTC, ending drug patent loopholes or for critical medications or "buying out" the patient so it can be immediately be made generic, adding more restrictions to testing so doctors have to actually think before ordering every test under the sun because it's not their money, massively reducing the regulations on medical devices, I could go on forever.
Stupid unnecessary expense times your population is way more money than the treatment for some rare disease.