> Why do we get to decide what is and isn't worth the risk?
It's not their risk to take. Getting a drug to market is a complex process that can be derailed by any number of mistakes ranging from the mundane like improper blood draw during clinical trials to the tragic like accidental deaths that puts public pressure on the FDA to shut it down or spook away investors. Any hiccup in this process can kill it and once a patent expires, the chances of someone bringing that drug to market is almost zero, regardless of its efficacy.
The vast majority of drugs and therapies are developed via private investment and many companies go public before they make even a cent of revenue to fund the clinical trials. Public sentiment is the driving force behind their stock prices because they're literally forbidden from making money until the FDA approves their drug. Lots of them go bankrupt every year before finishing clinical trials or releasing a product and rushing the process is quick ticket there.
Patients don't get to put at risk the decades of good a drug can do because they're desperate and afraid of dying.
I'm not sure removing options from the desperate and dying is a good idea. Those with means will just ignore your concerns and the rest will have _nothing to lose_.
I can't find it anymore, but there was a paper or maybe study looking into the question of healthcare outcomes for just such "people of means." Iirc there was some interesting data which showed being able to afford doctor shopping and concierge service was sometimes correlated with poor outcomes compared to the standard of care overall. I think it makes sense, the patient can demand what they want and then get it, but they're not necessarily armed with the knowledge or perspective to make the informed decision. If they can afford to find a doctor who values a lot of money over anything else though, they can get it, and that might not work out so well for them.
Michael Jackson, Joan Rivers and Lisa-Marie Presley for example would probably all still be alive if they didn't have the money to simply buy the healthcare they wanted, damn the consequences and cost.
It's not their risk to take. Getting a drug to market is a complex process that can be derailed by any number of mistakes ranging from the mundane like improper blood draw during clinical trials to the tragic like accidental deaths that puts public pressure on the FDA to shut it down or spook away investors. Any hiccup in this process can kill it and once a patent expires, the chances of someone bringing that drug to market is almost zero, regardless of its efficacy.
The vast majority of drugs and therapies are developed via private investment and many companies go public before they make even a cent of revenue to fund the clinical trials. Public sentiment is the driving force behind their stock prices because they're literally forbidden from making money until the FDA approves their drug. Lots of them go bankrupt every year before finishing clinical trials or releasing a product and rushing the process is quick ticket there.
Patients don't get to put at risk the decades of good a drug can do because they're desperate and afraid of dying.