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I just watched a 60 Minutes story last night about new DNA drugs that can cure these exotic diseases with a SINGLE treatment, but that treatment is millions of dollars. Rich people can get it, because they'll simply pay, but insurance companies are routinely denying them, of course.
These are a new type of drug, and they've been under development for a long time, and they are just coming to market, so the demand for these drugs is just beginning, and will definitely grow.
They spoke to the CEO of a small insurance company that was faced with a patient, a baby, who needed a new drug, but it cost so much that it would literally bankrupt the company, especially if they had multiple patients. Without the drug, she'd be dead by age 2. He didn't want to deny it, but the pharmaceutical company was charging so much he didn't have a choice but to deny. Instead, he personally led the charge to raise money, lobby the pharma company, etc., and finally convinced Medicaid to pay it.
The little girl mostly recovered, and is now getting straight As. Unfortunately, by the time she got treatment, she had permanently lost the use of her legs, and will be in a wheelchair for the rest of her life. Had they not dicked around, and got her treatment the minute it was diagnosed, she'd be a normal kid, but she was victimized by our healthcare system, who at first decided to let her die for profit.
Oh yeah, they also spoke with the Pharma CEO, and he was as much a psychopath as you'd expect, patiently explaining how expensive it is to create these drugs, so they have to charge accordingly, as much as it pains him, while not mentioning that this drug will also be available to patients in most other countries for free. Only Americans seem to have to bear the cost of developing drugs that benefit the entire world.
We create it, manufacture it, sell it, but we also have to pay for it, and we can't have it, while the rest of the world benefits.