6 ms·

> "I’ve made hundreds of phone calls and e-mails, pleaded with physicians, pharmaceutical companies and clinical investigators. I’ve begged for appointments to

by mft_ 3y ago

> "I’ve made hundreds of phone calls and e-mails, pleaded with physicians, pharmaceutical companies and clinical investigators. I’ve begged for appointments to establish care, open trial slots, opportunities to be screened for eligibility—really—for Jake’s life." This just shouldn't be necessary. In 2023, we as a race should be able to figure out a better way to efficiently channel patients with needs towards clinical trials that might serve those needs. (And I say this as someone who works in this industry.)

ballenf 3y ago
When someone says "it's [current year] so [bad thing] should have stopped by now", I get confused. It feels like it's implying that humans today are fundamentally different from humans in the past. In fact it feels dangerous to me that we often speak of ourselves as almost a different species from humans in history. From an evolutionary perspective humans from any moment in recorded history are basically indistinguishable. Our brain capacity hasn't changed. We're not kinder. We're not less selfish. We do know more about many things (and less about some things). We have better tools. We've refined more matter into new forms. We have access to more useful energy. But those changes don't change who people are. No human at any point in history should be content with the state of things, but I don't think that struggle is easier today than it ever has been. We're pushing the boulder up the hill and we'll never reach the top, but should never stop pushing. Being in the industry, I'm glad you're not content with the state of things. It takes people like you, so thank you for your effort to make our world a better place. Even if we may disagree with nuances of the motivation.
- ryukafalz 3y ago
  > It feels like it's implying that humans today are fundamentally different from humans in the past. In fact it feels dangerous to me that we often speak of ourselves as almost a different species from humans in history. From an evolutionary perspective humans from any moment in recorded history are basically indistinguishable. Our brain capacity hasn't changed. We're not kinder. We're not less selfish. When people say this (myself included), I think it's a normative statement, not a positive one. Of course we're the same humans we have been for thousands of years. But the act of calling out our failings as a society can itself, sometimes, spur people to try to change it for the better. In 2023, we are (positively) essentially the same as our ancestors. But also in 2023, we should (normatively) strive to be better than them, and to be conscious of our failings when we don't.
graypegg 3y ago
I’ll be honest, I don’t know a ton about medical trials and how they pick participants. But is there any reason why people are excluded despite seeking out the trial runners, and have a terminal illness that their drug/procedure MIGHT help with? I assume the chance it won’t work is legally dealt with for all trial patients, so I’m assuming that’s not the issue. If they don’t fit the test profile, is there any risk to just simply acknowledging them as an outlier and letting them in anyway? You have one consistent cohort you’re studying, and a “who knows, maybe?” cohort of preliminary results from these Hail Mary folks. That seems useful, even if it lacks the sort of rigour of a group you selected.
- tekla 3y ago
  It takes time and work to vet and monitor patients.
  - freedomben 3y ago
    Yep. My understanding is that they have to vet and monitor the patients extensively and provide other coverage should negative things happen. If it was as simple as "let the person buy the drug" then it would be a different story, but they can't legally do that.
  - gtf21 3y ago
    (As someone who has spent quite a lot of my time, recently, going through this with a family member) the screening process is sometimes very demanding, but also often very opaque to those going through it. Our experience has been that, since the "checklists" are proprietary information, we have no idea what our chances of success are until we either get in or we don't. This part definitely feels very broken to me. People going for clinical trials are often somewhat desperate, giving them that extra uncertainty to play with doesn't help.
    - deleted 3y ago
      [deleted]
    - LaurenSerino 3y ago

by mft_ 3y ago

ballenf 3y ago

When someone says "it's [current year] so [bad thing] should have stopped by now", I get confused. It feels like it's implying that humans today are fundamentally different from humans in the past. In fact it feels dangerous to me that we often speak of ourselves as almost a different species from humans in history. From an evolutionary perspective humans from any moment in recorded history are basically indistinguishable. Our brain capacity hasn't changed. We're not kinder. We're not less selfish. We do know more about many things (and less about some things). We have better tools. We've refined more matter into new forms. We have access to more useful energy. But those changes don't change who people are. No human at any point in history should be content with the state of things, but I don't think that struggle is easier today than it ever has been. We're pushing the boulder up the hill and we'll never reach the top, but should never stop pushing. Being in the industry, I'm glad you're not content with the state of things. It takes people like you, so thank you for your effort to make our world a better place. Even if we may disagree with nuances of the motivation.

ryukafalz 3y ago
> It feels like it's implying that humans today are fundamentally different from humans in the past. In fact it feels dangerous to me that we often speak of ourselves as almost a different species from humans in history. From an evolutionary perspective humans from any moment in recorded history are basically indistinguishable. Our brain capacity hasn't changed. We're not kinder. We're not less selfish. When people say this (myself included), I think it's a normative statement, not a positive one. Of course we're the same humans we have been for thousands of years. But the act of calling out our failings as a society can itself, sometimes, spur people to try to change it for the better. In 2023, we are (positively) essentially the same as our ancestors. But also in 2023, we should (normatively) strive to be better than them, and to be conscious of our failings when we don't.

graypegg 3y ago

I’ll be honest, I don’t know a ton about medical trials and how they pick participants. But is there any reason why people are excluded despite seeking out the trial runners, and have a terminal illness that their drug/procedure MIGHT help with? I assume the chance it won’t work is legally dealt with for all trial patients, so I’m assuming that’s not the issue. If they don’t fit the test profile, is there any risk to just simply acknowledging them as an outlier and letting them in anyway? You have one consistent cohort you’re studying, and a “who knows, maybe?” cohort of preliminary results from these Hail Mary folks. That seems useful, even if it lacks the sort of rigour of a group you selected.

tekla 3y ago
It takes time and work to vet and monitor patients.
- freedomben 3y ago
  Yep. My understanding is that they have to vet and monitor the patients extensively and provide other coverage should negative things happen. If it was as simple as "let the person buy the drug" then it would be a different story, but they can't legally do that.
- gtf21 3y ago
  (As someone who has spent quite a lot of my time, recently, going through this with a family member) the screening process is sometimes very demanding, but also often very opaque to those going through it. Our experience has been that, since the "checklists" are proprietary information, we have no idea what our chances of success are until we either get in or we don't. This part definitely feels very broken to me. People going for clinical trials are often somewhat desperate, giving them that extra uncertainty to play with doesn't help.
  - deleted 3y ago
    [deleted]
  - LaurenSerino 3y ago