3 ms·

> On the other hand, it does prevent snake oil sales from screwing over people who aren’t as savvy as you might be. I don’t think you’re taking this on as your

by jcims 5y ago

> On the other hand, it does prevent snake oil sales from screwing over people who aren’t as savvy as you might be. I don’t think you’re taking this on as your own but I’ve lost all empathy for that position. We have other mechanisms to remedy fraudulent or substantively anti-social behavior. I was actually in the same boat as the previous commenter but my daughter has Type 1 diabetes so hardware scarcity wasn’t the limiting factor. Actually nothing was. I was able to monitor my blood glucose level continuously for a month and it answered my questions. I’ll likely do it again in a few months.

ok_dad 5y ago
> We have other mechanisms to remedy fraudulent or substantively anti-social behavior. Well maybe for a lemon car, but literally the FDA was started because people would take medications and medical advice from scammers and die. Like I said, they can be overzealous and I’m not arguing that certain things should be allowed (like glucose monitors, probably), but you also have to realize that for every one of you who understand what the monitor does, there’s probably 50 people who would drink bleach solution to cure cancer and 50 more who would sell those 50 the bleach solution.
- BurningFrog 5y ago
  There are two types of errors the FDA can do. Both will cause deaths. Type 1: FDA approves something that ends up killing people. Many die. Type 2: FDA doesn't approve something that would cure disease. Many die. The FDA, and public discourse is only about Type 1, and it is the one FDA is very focused on minimizing. As a result, many Americans - probably millions over the decades - die from Type 2 errors. > you also have to realize that for every one of you who understand what the monitor does, there’s probably 50 people who would drink bleach solution to cure cancer If you honestly think 98% of Americans would drink bleach for their health, I understand why you favor a strict approach.
  - netizen-936824 5y ago
    Oddly enough we do have current day examples of people drinking bleach after being told it would help with COVID. The numbers weren't quite that high, though
    - cperciva 5y ago
      Perhaps some cases, but the increase in bleach related poisonings was associated with accidental consumption by young children after parents started sanitizing surfaces more early in the pandemic.
      - shakna 5y ago
        And adult Americans [0] lost to conspiracies and the insanity we've seen popping up around the last couple years. [0] https://www.dallasobserver.com/news/dallas-qanon-cult-members-are-drinking-toxic-chemicals-en-masse-13038506 https://www.dallasobserver.com/news/dallas-qanon-cult-member...
    - BurningFrog 5y ago
      Do we really have documented cases?
  - Retric 5y ago
    You’re vastly overestimating the rate of progress and these delays to come up with millions of deaths. The delay isn’t decades for any one medical treatment and the delay also regularly saves lives. It’s possible to get ~50,000 lives lost over the last 80 years assuming your overly pessimistic when running the numbers, but that generally assumes people can speed things up without any negative consequences from less stringent procedures. In practice the FDA is likely moving to fast rather than to slow and would save significantly more lives long term by requiring more data.
    - jcims 5y ago
      I’d wager that the numbers in cancer treatment alone are much higher than that. From my personal experience as an advocate for a patient, most doctors seem to be scared to death to get off the ‘standard of care’ rails and *definitely* aren’t comfortable suggesting an alternate treatment plan once the primary doctor has started one. Basically if someone gets a terminal illness and doesn’t seek medical attention, then the disease is blamed for their death. If that same person does seek medical attention and dies anyway, it’s still the disease that killed them as long as the doc followed the FDAs runbook. BUT if the doc tried anything new and the patient dies, well then obviously the doc killed them and they should lose their license and die bankrupt. Clearly just letting docs go cowboy isn’t likely to have great outcomes either, but something in the middle may.
      - Retric 5y ago
        Saying the runbook isn’t perfect is not a specific treatment plan. The rules are very loose for studies on terminal people, but allowing random treatments without being part of a study has minimal utility. Something might prolong someone’s life but you have no way to verify and cancer treatment very often kills people before the cancer.
        jcims 5y ago
        >Saying the runbook isn’t perfect is not a specific treatment plan. Of course, that's the point I'm trying to make. Doctors have very limited opportunity to replace the runbook with a specific treatment plan because, at least based on my limited observation, they are not allowed to create specific treatment plans without the runbook. >The rules are very loose for studies on terminal people, The patient I was working with was terminal and the only rule that was loose seemed to be the ability to abandon a treatment plan early when it stopped showing promise. >but allowing random treatments without being part of a study has minimal utility. Something might prolong someone’s life but you have no way to verify and cancer treatment very often kills people before the cancer. Minimal utility to medicine maybe, but not to the individual. If a person invests hundreds or thousands of hours investigating adjuvant therapies, reviewing trial outcomes and talking to PI, researchers, clinicians and trial coordinators, I'm of the opinion their primary oncologist should at least entertain a suggestion, not just dismiss the conversation with 'that's not standard of care'. Anyway, I'm not going to change anything here on HN. Thanks for your time.
- jcims 5y ago
  I understand the position, I guess I’m just not as sympathetic to it as I used to be. It used to be ’think of the children’, now it’s becoming ’think of the morons’.
- Dylan16807 5y ago
  But the bleach thing is happening anyway, despite lack of approval. And bleach certainly isn't on the list of what would get through if approval was loosened some.

by jcims 5y ago

ok_dad 5y ago

> We have other mechanisms to remedy fraudulent or substantively anti-social behavior. Well maybe for a lemon car, but literally the FDA was started because people would take medications and medical advice from scammers and die. Like I said, they can be overzealous and I’m not arguing that certain things should be allowed (like glucose monitors, probably), but you also have to realize that for every one of you who understand what the monitor does, there’s probably 50 people who would drink bleach solution to cure cancer and 50 more who would sell those 50 the bleach solution.

BurningFrog 5y ago
There are two types of errors the FDA can do. Both will cause deaths. Type 1: FDA approves something that ends up killing people. Many die. Type 2: FDA doesn't approve something that would cure disease. Many die. The FDA, and public discourse is only about Type 1, and it is the one FDA is very focused on minimizing. As a result, many Americans - probably millions over the decades - die from Type 2 errors. > you also have to realize that for every one of you who understand what the monitor does, there’s probably 50 people who would drink bleach solution to cure cancer If you honestly think 98% of Americans would drink bleach for their health, I understand why you favor a strict approach.
- netizen-936824 5y ago
  Oddly enough we do have current day examples of people drinking bleach after being told it would help with COVID. The numbers weren't quite that high, though
  - cperciva 5y ago
    Perhaps some cases, but the increase in bleach related poisonings was associated with accidental consumption by young children after parents started sanitizing surfaces more early in the pandemic.
    - shakna 5y ago
      And adult Americans [0] lost to conspiracies and the insanity we've seen popping up around the last couple years. [0] https://www.dallasobserver.com/news/dallas-qanon-cult-members-are-drinking-toxic-chemicals-en-masse-13038506 https://www.dallasobserver.com/news/dallas-qanon-cult-member...
  - BurningFrog 5y ago
    Do we really have documented cases?
- Retric 5y ago
  You’re vastly overestimating the rate of progress and these delays to come up with millions of deaths. The delay isn’t decades for any one medical treatment and the delay also regularly saves lives. It’s possible to get ~50,000 lives lost over the last 80 years assuming your overly pessimistic when running the numbers, but that generally assumes people can speed things up without any negative consequences from less stringent procedures. In practice the FDA is likely moving to fast rather than to slow and would save significantly more lives long term by requiring more data.
  - jcims 5y ago
    I’d wager that the numbers in cancer treatment alone are much higher than that. From my personal experience as an advocate for a patient, most doctors seem to be scared to death to get off the ‘standard of care’ rails and *definitely* aren’t comfortable suggesting an alternate treatment plan once the primary doctor has started one. Basically if someone gets a terminal illness and doesn’t seek medical attention, then the disease is blamed for their death. If that same person does seek medical attention and dies anyway, it’s still the disease that killed them as long as the doc followed the FDAs runbook. BUT if the doc tried anything new and the patient dies, well then obviously the doc killed them and they should lose their license and die bankrupt. Clearly just letting docs go cowboy isn’t likely to have great outcomes either, but something in the middle may.
    - Retric 5y ago
      Saying the runbook isn’t perfect is not a specific treatment plan. The rules are very loose for studies on terminal people, but allowing random treatments without being part of a study has minimal utility. Something might prolong someone’s life but you have no way to verify and cancer treatment very often kills people before the cancer.
      - jcims 5y ago
        >Saying the runbook isn’t perfect is not a specific treatment plan. Of course, that's the point I'm trying to make. Doctors have very limited opportunity to replace the runbook with a specific treatment plan because, at least based on my limited observation, they are not allowed to create specific treatment plans without the runbook. >The rules are very loose for studies on terminal people, The patient I was working with was terminal and the only rule that was loose seemed to be the ability to abandon a treatment plan early when it stopped showing promise. >but allowing random treatments without being part of a study has minimal utility. Something might prolong someone’s life but you have no way to verify and cancer treatment very often kills people before the cancer. Minimal utility to medicine maybe, but not to the individual. If a person invests hundreds or thousands of hours investigating adjuvant therapies, reviewing trial outcomes and talking to PI, researchers, clinicians and trial coordinators, I'm of the opinion their primary oncologist should at least entertain a suggestion, not just dismiss the conversation with 'that's not standard of care'. Anyway, I'm not going to change anything here on HN. Thanks for your time.
jcims 5y ago
I understand the position, I guess I’m just not as sympathetic to it as I used to be. It used to be ’think of the children’, now it’s becoming ’think of the morons’.
Dylan16807 5y ago
But the bleach thing is happening anyway, despite lack of approval. And bleach certainly isn't on the list of what would get through if approval was loosened some.