4 ms·

Said no patient ever. Everyone wants right to try, understandable that insurance would only cover sufficiently proven treatments. But if I can raise money, I wa

Said no patient ever. Everyone wants right to try, understandable that insurance would only cover sufficiently proven treatments. But if I can raise money, I want to at least take the most promising currently and if it doesn't work, oh well.

ryukoposting 3y ago
I think the important detail here is that, to anyone paying attention to the results of the clinical trials, this drug never showed promise in the first place. The system we have is slow because it's thorough. Sometimes we have to move faster, and that's what EUAs are for. The worst versions of "right to try" policy would open the floodgates to all kinds of quack drugs with astronomical price tags. The resulting system would extract money from the desperate, and do very little to cure the ill.
- thenerdhead 3y ago
  Not true. You can mark certain confirmed illnesses with provisions. Quacks won’t be allowed in such regulated environments. https://www.congress.gov/bill/118th-congress/senate-bill/1906/titles?s=1&r=44 https://www.congress.gov/bill/118th-congress/senate-bill/190...
  - marcinzm 3y ago
    > Quacks won’t be allowed in such regulated environments. Presumably, however, pharmaceutical companies striving to maximize shareholder value at all costs are allowed which is probably much worse in the end.
    - thenerdhead 3y ago
      Yes they are free to do that if their drugs work. That’s allowed in any capitalist market.
      - marcinzm 3y ago
        You can't lower the thresholds for determining if a drug works also also argue that you're not lowering thresholds.
        thenerdhead 3y ago
        You clearly didn’t read or understand what the bill is saying. This might be helpful to understand context too: https://youtu.be/ma0xH0EI7Us?si=Qhg5pz6-FgYC0j_o https://youtu.be/ma0xH0EI7Us?si=Qhg5pz6-FgYC0j_o
        marcinzm 3y ago
        > You clearly didn’t read or understand what the bill is saying. You clearly didn’t explain what the bill is saying.
        thenerdhead 3y ago
        Ah sorry I assumed people read comments. Here is a summary https://youtu.be/HgcRCKdf9qg?si=7F0saD9UDEMkgFn9 https://youtu.be/HgcRCKdf9qg?si=7F0saD9UDEMkgFn9
        marcinzm 3y ago
        > Ah sorry I assumed people read comments. Links are not comments. If you're unable to even try to summarize the content in a comment then you shouldn't expect other people to parse through it for a random online discussion. Either you care enough to actually participate in this discussion including making substantive comments or you don't. If you don't then don't get butt hurt at others because they call out your own laziness and refuse to make up for it.
        thenerdhead 3y ago
        Either you care enough to read my comment and link to comment back or you don’t. That’s called decency. Not my laziness to be quite honest with you. There’s now two comments and yet you still haven’t cared to respond about the original comment. Anyway here’s the last comment I’ll make. This bill was written for ALS folks. It allows them to get access to safe drugs while clinical trials continue on efficacy. These provisioned drugs/illnesses like ALS, Cancer, etc provide dying people a chance to try things they would not be able to get, even through expanded access programs. This has little to do with quacks entering the market or cynical capitalism. The drugs must demonstrate safety already and have some scientific evidence that they are on a “promising path” to efficacy while going through later phased trials. We live in a day and age where much of our medicine is quite safe and goes through rigorous testing. But clinicians cannot get access to these drugs until they have been EUA or approved. This process takes many years to do and people suffering from these diseases have a right to try “unproven”, promising things.

ryukoposting 3y ago

I think the important detail here is that, to anyone paying attention to the results of the clinical trials, this drug never showed promise in the first place. The system we have is slow because it's thorough. Sometimes we have to move faster, and that's what EUAs are for. The worst versions of "right to try" policy would open the floodgates to all kinds of quack drugs with astronomical price tags. The resulting system would extract money from the desperate, and do very little to cure the ill.

thenerdhead 3y ago
Not true. You can mark certain confirmed illnesses with provisions. Quacks won’t be allowed in such regulated environments. https://www.congress.gov/bill/118th-congress/senate-bill/1906/titles?s=1&r=44 https://www.congress.gov/bill/118th-congress/senate-bill/190...
- marcinzm 3y ago
  > Quacks won’t be allowed in such regulated environments. Presumably, however, pharmaceutical companies striving to maximize shareholder value at all costs are allowed which is probably much worse in the end.
  - thenerdhead 3y ago
    Yes they are free to do that if their drugs work. That’s allowed in any capitalist market.
    - marcinzm 3y ago
      You can't lower the thresholds for determining if a drug works also also argue that you're not lowering thresholds.
      - thenerdhead 3y ago
        You clearly didn’t read or understand what the bill is saying. This might be helpful to understand context too: https://youtu.be/ma0xH0EI7Us?si=Qhg5pz6-FgYC0j_o https://youtu.be/ma0xH0EI7Us?si=Qhg5pz6-FgYC0j_o
        marcinzm 3y ago
        > You clearly didn’t read or understand what the bill is saying. You clearly didn’t explain what the bill is saying.
        thenerdhead 3y ago
        Ah sorry I assumed people read comments. Here is a summary https://youtu.be/HgcRCKdf9qg?si=7F0saD9UDEMkgFn9 https://youtu.be/HgcRCKdf9qg?si=7F0saD9UDEMkgFn9
        marcinzm 3y ago
        > Ah sorry I assumed people read comments. Links are not comments. If you're unable to even try to summarize the content in a comment then you shouldn't expect other people to parse through it for a random online discussion. Either you care enough to actually participate in this discussion including making substantive comments or you don't. If you don't then don't get butt hurt at others because they call out your own laziness and refuse to make up for it.
        thenerdhead 3y ago
        Either you care enough to read my comment and link to comment back or you don’t. That’s called decency. Not my laziness to be quite honest with you. There’s now two comments and yet you still haven’t cared to respond about the original comment. Anyway here’s the last comment I’ll make. This bill was written for ALS folks. It allows them to get access to safe drugs while clinical trials continue on efficacy. These provisioned drugs/illnesses like ALS, Cancer, etc provide dying people a chance to try things they would not be able to get, even through expanded access programs. This has little to do with quacks entering the market or cynical capitalism. The drugs must demonstrate safety already and have some scientific evidence that they are on a “promising path” to efficacy while going through later phased trials. We live in a day and age where much of our medicine is quite safe and goes through rigorous testing. But clinicians cannot get access to these drugs until they have been EUA or approved. This process takes many years to do and people suffering from these diseases have a right to try “unproven”, promising things.