I can’t imagine how hard it must be for the dozens of people out there suffering from this rare ailment knowing a perfect cure/treatment is possible but not worth it for the shareholders.
We as a society kind of do this all the time. We bail out the banks with billions, then let some poor people starve. Also in the general case, I'm quite surprised that people don't get fed up with the government acting against their interests.
Since it's a one time cure, I think the 1mio price was reasonable. At least compared to 10+ multiple day hospital visits. This was just the government fudging their negotiation.
The shareholders are doing as much as the rest of us to help those dozens of people. It isn't fair to cast the blame on them.
The real culprit here is the system of laws and controls that forbid anyone else from stepping in to fill the hole they've left. The regulations and regulators deserve to be held up as the problem here. If it wasn't illegal to compete then maybe someone would. Maybe even one of the people who need the drug.
Isn't there an argument where humans arnt' here just to be fleeced? I mean who came first ? the chicken or the egg, are we just creating the monster that'll devour us? In a twisted way the profit motive basically is anti ecological, after all people talk about shareholders but they're just some pension fund who won't be around when we're under water.... I realise capitalism helps us find the most efficient solutions, but at one point we're the ones being milked (to death) and some big cheese(Welch GE) finds a way to create wealth by creating debt and then 20 years later they split it up to create more bubble wealth it becomes ridiculous and you're throwing the baby (us) away with the bathwater...
If he can do this at home, why hasn't a pharmaceutical company made something equivalent for the incredibly large population of lactose intolerant people around the world?
It wasn't done at home. It was done in a lab by someone who majored in biology for the express purpose of finding a cure for his lactose intolerance.
It's been a bit since I watched the two videos* he made, so I don't remember the details. But it was the first time I ever felt anything positive about gene therapy. I'm too used to seeing people like me treated like Frankenstein's monster so people can do cool science and not care about the suffering of their human guinea pigs.
But most likely the short version is that he was only using this on himself. He didn't need to get FDA approval or do clinical trials.
That's an enormously frustrating process for the folks with incurable conditions who just tear their hair out over decisions to deny approval because something bad might happen down the road. We tend to feel like "Let me live long enough to have those problems, you ass!!!!"
But those processes exist for a reason. (Look up Thalidomide if you care to know how wrong things can go.)
Maybe someday there will be a readily available gene therapy for lactose intolerance. Maybe his work will be the starting point for it.
* He has made a lot more than two videos but there are two specifically about this gene therapy he administered to himself.
As hard as for anyone who couldn't afford a $1000 drug or someone who couldn't afford a $100...
The ugliness of inequality fueled by capitalism is more pronounced in medical treatments, I've witnessed it firsthand several times.
In early 90s as 6-7 year old I had to undergo a revolutionary treatment at most expensive private hospital in India, days before surgery the doctor privately demand a large sum of unaccounted money. This repeated several times for subsequent surgeries and my father had to go in large debt each time.
We were a middle-class family by Indian standards yet my family's lifestyle were severely limited by from my medical expenditures, A poor family doesn't even stand a chance. What's worse is that the doctor had made incorrect diagnosis of my ailment at that time which lead me to a life-threatening recently.
This is what worries me about the COVID pandemic, Medical professionals who honestly believed that they're doing a service to humanity rushed to the front lines without any regard to their or their family's safety and many of them have perished. Now the ratio of corrupt entrepreneurs masquerading as medical professionals who flew to COVID-free islands during pandemic to the medical professionals who treat their profession as a service has now further worsened.
Since it's a one time cure, I think the 1mio price was reasonable. At least compared to 10+ multiple day hospital visits. This was just the government fudging their negotiation.