21–30 of 220 posts
Fuck cancer :(
Reading his post was like a gut punch, and I didn't even know the guy. It breaks your heart to hear someone speak with certainty about their own demise, and to face it with such grace and clarity makes it all the more heart-wrenching. It sounds like he was with his family in his final moments, and I hope he wasn't in much pain. Rest in peace.
Jake's wife on FDA deregulation https://bessstillman.substack.com/p/the-drugs-killing-dying-...
Because those rules are in place for reasons. And some of those reasons are to prevent drug companies from turning the poor into lab rats with no regard to their safety. And I guarantee you, you let "terminal" patients skirt rules, there will be a hell of a lot more "terminal" patients.
And I'm sure there are some non-regulation reasons to limit various therapies. They are trying to see if thing X can help. And if thing X only helps when combined with thing Y, you don't exactly get that information when focusing on thing X. Or the worse scenarios of thing Y making thing X ineffective or harmful.
This was written from a very emotional place, and understandably so. But that state means they are not exactly in a position to consider all the reasons. And it must be frustrating as hell to have tried 40 things that didn't work to only be denied the 41st because you tried too many other things. Especially if that 41st thing turns out to be something that works.
But I don't think the answer is let terminal patients take whatever they feel like.
Reading his post was like a gut punch, and I didn't even know the guy. It breaks your heart to hear someone speak with certainty about their own demise, and to face it with such grace and clarity makes it all the more heart-wrenching. It sounds like he was with his family in his final moments, and I hope he wasn't in much pain. Rest in peace.
Jake's wife on FDA deregulation https://bessstillman.substack.com/p/the-drugs-killing-dying-...
This is a complicated subject. Because those rules are in place for reasons. And some of those reasons are to prevent drug companies from turning the poor into lab rats with no regard to their safety. And I guarantee you, you let "terminal" patients skirt rules, there will be a hell of a lot more "terminal" patients. And I'm sure there are some non-regulation reasons to limit various therapies. They are trying to see…
I don't think anyone has the moral authority to tell anyone else what they can take, especially terminal patients.
I do, however think governments have a responsibility to regulate how drug companies conduct trials so as to minimize harm to patients. This probably has the same outcome in practice, but I find the moral distinction important.
It's impressive to me that Jake managed to remain involved and communicative until so near the end. I withdraw into a personal shell when I get so much as a hang nail. Respect.
If a hang nail is bad enough to make you withdraw then that means you don't have a lot of experience of getting sick to the point where you had to push through as it hasn't happened a lot. Over the course of the 14 years I've had with my partner (started year 15 last month!) I've seen how she's had to adapt to remain involved and communicative - and a lot of days, that's a struggle for her that she puts herself through to stay connected to the people she loves.
tl;dr: It's an adaptation, and I'm glad that you've not had to build that adaptation.
Reading his post was like a gut punch, and I didn't even know the guy. It breaks your heart to hear someone speak with certainty about their own demise, and to face it with such grace and clarity makes it all the more heart-wrenching. It sounds like he was with his family in his final moments, and I hope he wasn't in much pain. Rest in peace.
I like to think some day his daughter will appreciate getting to go through his HN comments & such.
Earlier quoted context omitted.
This is a complicated subject. Because those rules are in place for reasons. And some of those reasons are to prevent drug companies from turning the poor into lab rats with no regard to their safety. And I guarantee you, you let "terminal" patients skirt rules, there will be a hell of a lot more "terminal" patients. And I'm sure there are some non-regulation reasons to limit various therapies. They are trying to see…
> But I don't think the answer is let terminal patients take whatever they feel like. I don't think anyone has the moral authority to tell anyone else what they can take, especially terminal patients. I do, however think governments have a responsibility to regulate how drug companies conduct trials so as to minimize harm to patients. This probably has the same outcome in practice, but I find the moral distinction im…
Desperation can cloud even the most rational of minds.