4 ms·

Cure ID App Lets Clinicians Report Novel Uses of Existing Drugs

72 points by throw0101d 2y ago

khelavastr 2y ago
[flagged]
- drowsspa 2y ago
  I find it amazing that a king can just say that a drug works and then it becomes the absolute truth forever
  - mlinhares 2y ago
    Sometimes people want to believe in stuff so hard there's no way objetive reality will ever get to them. Like trickle-down economics.
- smt88 2y ago
  Which drugs are you referring to?
  - VoidWhisperer 2y ago
    Presumably something similar to how people (who had to be detached from reality at that point) swore by ivermectin, a horse dewormer as treatment.
    - fanatic2pope 2y ago
      This irrational belief isn't going away either. It seems to be spreading, in fact. A relative of mine recently was diagnosed with cancer and a "friend" of hers suggested she try ivermectin.
      - jchw 2y ago
        Not sure how well this article has held up to time but Scott Alexander had a pretty compelling analysis of the situation. https://www.astralcodexten.com/p/ivermectin-much-more-than-you-wanted https://www.astralcodexten.com/p/ivermectin-much-more-than-y... The tl;dr, as I recall it: it seems ivermectin really did work in some populations, in reducing COVID mortality. However, those populations were ones where one was much more likely to have worms, so the hypothesis is that indeed did work, but only because it worked as a dewormer and not having worms concurrently with COVID decreased the likelihood of mortality.
    - somenameforme 2y ago
      The FDA was sued and lost (or at least agreed to a settlement) over those comments, which were consequently deleted. Ivermectin is a human antiparasitic that's even on the WHO List of Essential Medicines. [1] Their comment was akin to saying that amoxicillin is a horse antibacterial drug, which is true, but quite misleading. Off-label usage for pharmaceuticals is extremely common and an important right of doctors. I mean that's pretty much the entire point of this topic! [1] - https://en.wikipedia.org/wiki/Ivermectin https://en.wikipedia.org/wiki/Ivermectin
      - dvdhnt 2y ago
        This is the truth. I'm assuming this, like my similar comments, will continue to be downvoted by people who are out of touch with reality.
        deleted 2y ago
        [deleted]
      - VoidWhisperer 2y ago
        Ah.. that said, even that wikipedia article points out that multiple research studies were done that demonstrated little to no benefit in the context of covid19 (and the ones that did were eventually proven faulty or fraudulent) - I agree that Ivermectin is an important drug, just not in the context of covid19
    - dvdhnt 2y ago
      [flagged]
    - drdeca 2y ago
      The fact that people were obtaining it from sources intended for horses is mostly unrelated to the fact that it is not effective as a Covid treatment for people who don’t have some other parasite in addition to Covid. I don’t think calling it a horse dewormer is helpful, despite the fact that people were obtaining it from people who were selling it for the treatment of horses. People who (wrongly) think it works as treatment for covid will probably be aware that it is not exclusively a treatment for horses, so I don’t think calling it a horse dewormer will change any of their minds. Even if it did, I am uncomfortable relying on misleading people in order to convince them of something true. (If someone believes X, and X is false, and you want to convince them of a true statement Z, then it is fine to say “X is false, but, I know you believe that X. Y is true, and X and Y together clearly imply Z. Therefore you should conclude Z.” (Assuming Y is true.) That’s not misleading someone. It is something different.) It seems like allowing oneself to mislead, even if only when the misleading statements are sorta true in a sense, just not in the way they will be interpreted, in order to convince someone of something that is true, is rather dangerous. If such behavior were universalized, I think it would be rather bad for collective understanding. (What if someone U is trying to convince someone V of some statement P which U only believe is true because someone W misled U in to believe P in order to convince U of some other statement Q that is true, and then U says something misleading to V (leading V to believe a false statement R) in order to convince V that P ? Not good.)
- mikeyouse 2y ago
  Strong Rabois, "I'm literally saving lives by tweeting about HCQ and Covid" vibes.
  - dvdhnt 2y ago
    [flagged]
    - sorcerer-mar 2y ago
      > HCQ combined with Zinc was a valid treatment for Covid. What do you mean by "valid?" > The drugs peddled by the people profiting from Covid were essentially HCQ and Ivermectin clones Which specific drugs "peddled" by which people are you talking about? > Both are considered essential medicines by WHO Yeah... for things other than COVID. Your squishy-to-the-point-of-meaningless language should be a red flag. To everyone else for sure, but even to you.
    - fragmede 2y ago
      No it wasn't. You're buying into some alt-health nonsense.
    - OutOfHere 2y ago
      As someone who had Covid multiple times, CQ+quercetin+zinc was a valid treatment, but it required very cautious dosing. As for ivermectin, it did not help at all, but if someone has worms, perhaps it would help them. And no, the other drugs are not clones, as their mechanisms of action are completely different. Facts matter.
mdip 2y ago
Interesting ... it's presented in the context of drugs for curing infections. I wonder if this is being used for other drugs. My curiosity stems from personal experience: I had Migraine headaches from age 17 to about 35. I was put on ancient seizure medication that's common prescribed for Bipolar[0] because this doctor had three other patients that it nearly eliminated Migraine from. It was fall, a time when I'd get about one a week. After five days of taking it, I had my first Migraine ... if you could call it that -- I could only identify that it was a Migraine by the aura; the pain was about 10% what I'm used to). Searching through the web, I found a forum that was filled with Migraine sufferers. Sure enough, there were a handful of people who swore by it. There were also a handful of people who it didn't work for. Looking at the more official sources, there was no indication that this drug could have any effect on Migraine; they listed all of the other off-label uses[1], but Migraine was not among them. This medication had been in the news several times (and on the front page, here[2]) over the last few years and a year ago (or so), I looked it up on the "official sources", again. It now indicated that it was prescribed for Migraine. It made me wonder ... how are things like that figured out/communicated down-stream? Is it entirely informally amongst doctors? I went to four different specialists before I found one who suggested this drug -- and he did so in a "half-hearted manner" not truly expecting it would work. It'd be nice if this was centrally tracked/managed as it might surface both "new uses for old drugs" and "new problems with old drugs." [0] Which I do not have. [1] It's rarely, if ever, prescribed for what it was originally approved for. [2] It's Depakote, I'm not being cagey for nefarious purposes, I just didn't want this to be a drug advertisement.
- meew0 2y ago
  Once drugs lose patent protection, it's difficult for them to gain approval for new indications, because drug approval procedures are extremely expensive and there's no patent holder left for whom it would make economic sense to spend all that money. So in cases like valproate for migraine, those drugs usually stay off-label long term. That makes them unattractive for doctors to prescribe, since they assume more liability if something goes wrong, and insurance companies are less likely to cover the drugs. The way information about off-label uses gets communicated is basically the same way as elsewhere in science: through scientific papers, conferences, textbooks, and the like. A doctor who discovers that their migraine patient does well on valproate might publish this as a case report. If there are many such reports, someone might do a randomized trial. Once there are many randomized trials, meta-analyses can be performed, and eventually, the information will end up in textbooks and medical school curricula. It takes a certain amount of agency for a doctor to stay up to date on the latest research; while medical boards tend to have certification requirements for CME (continuing medical education), these are usually quite lax, and a truly lazy doctor can probably just live their years without really learning anything new. At the same time, reading all new research that comes out is basically impossible, and even just trying to do this would risk always following the latest fads that later evidence might show to, in fact, be harmful. Every doctor needs to find their own middle ground here, and you as a patient must find a doctor that suits your own preferences.
navan 2y ago
Just today I read about this in the book "Who is Government" by Michael Lewis where he presents the case on how it can help find cure for rare diseases. You can read his article at https://www.washingtonpost.com/opinions/interactive/2025/michael-lewis-fda-who-is-government/ https://www.washingtonpost.com/opinions/interactive/2025/mic.... Also highly recommend the book.
- deleted 2y ago
  [deleted]
- rvba 2y ago
  That article has a horrible writing style. So much fluff and so litlle content.
adamredwoods 2y ago
I wonder how this is going (started 2013), because I have a hunch it will be chasing ghosts, mostly. Placebo affect is a factor here. I also wonder how many fake leads from "propaganda physicians" they get.
- bluGill 2y ago
  The real thing is can we (perhaps with new advances in statistics?) find places where doctors at the end of all known treatment try things at random and see if anything works. For rare symptoms it often isn't possible to run a proper controlled study (note that I said symptoms and not disease - often we are not really sure what is going on). So if we can give doctors a list "here is what someone else tried and or treatment Y seems to make things worse that is a clue. Eventually we can say that we don't know why, but X seems like your best shot even if it we can never get to real statistical significance. Doctors already have case studies which they (at least should) publish anytime they get someone who for whatever reason doesn't respond to standard treatment, or has something unknown. However it is hard for the next doctor to find any that might be relevant.
- lenerdenator 2y ago
  You don't know you're chasing ghosts until you start running. There's not much wrong with the system so long as it's used as a place to get ideas for clinical studies or absolute last-ditch attempts at saving lives. On occasion (like the Milwaukee Protocol for rabies), those last-ditch attempts do work. It's when people pretend there's no real investigation to be done that we get problems.
- GuinansEyebrows 2y ago
  Yeah, this seems like a worthwhile service, but I can't stop thinking about ivermectin.
  - mschuster91 2y ago
    It became apparent really fast that ivermectin was effective... against a superinfection with parasites, which the reported success cases all had. But by the time it became apparent, the correction didn't spread nearly as fast nor wide as the original information. The problem is, most people lack the scientific literacy to understand how science works, and many newspapers have long since gutted their expert journalists.
jjtheblunt 2y ago
"Content current as of: 06/08/2020"
CharlieDigital 2y ago
Very cool seeing this show up on HN. FDA has a bunch of interested datasets like this that are full of interesting data points. During COVID, I actually wrote a small sample app that pulls info from this DB: https://www.covidcureid.com/ https://www.covidcureid.com/ And gave a talk on it: https://learn.microsoft.com/en-us/shows/azure-serverless-conf/surfacing-fda-covid-data-using-serverless-functions-and-cosmosdb-with-charles-chen https://learn.microsoft.com/en-us/shows/azure-serverless-con...
- radicalbyte 2y ago
  How viable would it be to mirror the set? Given that the US is having it's ISIS book-burning moment so the original sources are at risk :(
  - CharlieDigital 2y ago
    Try emailing the team and see if you can get the data set: https://cure.ncats.io/resources/ehr-resources https://cure.ncats.io/resources/ehr-resources Otherwise, my code to extract the data is here: https://github.com/CharlieDigital/covidcureid/blob/main/server/data/fetch-data.js https://github.com/CharlieDigital/covidcureid/blob/main/serv...
    - Onawa 2y ago
      NCATS and other NIH data resource teams were heavily affected or completely dismantled during the latest reductions in force (RIFs). Getting data from certain areas inside HHS will be difficult to impossible for the foreseeable future.
  - kens 2y ago
    Your concerns may be justified. The site says: "This repository is under review for potential modification in compliance with Administration directives."
    - mollyphelps 2y ago
shreezus 2y ago
There are so many interesting, off-label novel uses for drugs that have already been developed. Recently my wife & I adopted a kitten that developed FIP, a disease caused by a feline coronavirus that was nearly 100% fatal up until just a few years ago. Turns out, a drug developed by Gilead Sciences (GS-441524) which is the active metabolite of remdesivir, is remarkably effective at treating the disease. It's a nucleoside analog, so it essentially is a slightly modified adenosine molecule which disrupts the virus RNA replication process. Within 12 hours of the first dose our cat went from dying to making a full turnaround and complete recovery following treatment. For us it was truly a miracle drug, and it only gained awareness recently due to the COVID-19 pandemic [1]. It still isn't technically "approved" for this use case, but is prescribed off-label by vets as of 2024 once the FDA relaxed its position [2]. Folks needed to seek it out on the black market (and still do in some areas). [1] https://www.theatlantic.com/science/archive/2020/05/remdesivir-cats/611341/ https://www.theatlantic.com/science/archive/2020/05/remdesiv... [2] https://www.fda.gov/animal-veterinary/cvm-updates/fda-announces-position-use-compounded-gs-441524-treat-fip https://www.fda.gov/animal-veterinary/cvm-updates/fda-announ...

72 points by throw0101d 2y ago

khelavastr 2y ago

[flagged]

drowsspa 2y ago
I find it amazing that a king can just say that a drug works and then it becomes the absolute truth forever
- mlinhares 2y ago
  Sometimes people want to believe in stuff so hard there's no way objetive reality will ever get to them. Like trickle-down economics.
smt88 2y ago
Which drugs are you referring to?
- VoidWhisperer 2y ago
  Presumably something similar to how people (who had to be detached from reality at that point) swore by ivermectin, a horse dewormer as treatment.
  - fanatic2pope 2y ago
    This irrational belief isn't going away either. It seems to be spreading, in fact. A relative of mine recently was diagnosed with cancer and a "friend" of hers suggested she try ivermectin.
    - jchw 2y ago
      Not sure how well this article has held up to time but Scott Alexander had a pretty compelling analysis of the situation. https://www.astralcodexten.com/p/ivermectin-much-more-than-you-wanted https://www.astralcodexten.com/p/ivermectin-much-more-than-y... The tl;dr, as I recall it: it seems ivermectin really did work in some populations, in reducing COVID mortality. However, those populations were ones where one was much more likely to have worms, so the hypothesis is that indeed did work, but only because it worked as a dewormer and not having worms concurrently with COVID decreased the likelihood of mortality.
  - somenameforme 2y ago
    The FDA was sued and lost (or at least agreed to a settlement) over those comments, which were consequently deleted. Ivermectin is a human antiparasitic that's even on the WHO List of Essential Medicines. [1] Their comment was akin to saying that amoxicillin is a horse antibacterial drug, which is true, but quite misleading. Off-label usage for pharmaceuticals is extremely common and an important right of doctors. I mean that's pretty much the entire point of this topic! [1] - https://en.wikipedia.org/wiki/Ivermectin https://en.wikipedia.org/wiki/Ivermectin
    - dvdhnt 2y ago
      This is the truth. I'm assuming this, like my similar comments, will continue to be downvoted by people who are out of touch with reality.
      - deleted 2y ago
        [deleted]
    - VoidWhisperer 2y ago
      Ah.. that said, even that wikipedia article points out that multiple research studies were done that demonstrated little to no benefit in the context of covid19 (and the ones that did were eventually proven faulty or fraudulent) - I agree that Ivermectin is an important drug, just not in the context of covid19
  - dvdhnt 2y ago
    [flagged]
  - drdeca 2y ago
    The fact that people were obtaining it from sources intended for horses is mostly unrelated to the fact that it is not effective as a Covid treatment for people who don’t have some other parasite in addition to Covid. I don’t think calling it a horse dewormer is helpful, despite the fact that people were obtaining it from people who were selling it for the treatment of horses. People who (wrongly) think it works as treatment for covid will probably be aware that it is not exclusively a treatment for horses, so I don’t think calling it a horse dewormer will change any of their minds. Even if it did, I am uncomfortable relying on misleading people in order to convince them of something true. (If someone believes X, and X is false, and you want to convince them of a true statement Z, then it is fine to say “X is false, but, I know you believe that X. Y is true, and X and Y together clearly imply Z. Therefore you should conclude Z.” (Assuming Y is true.) That’s not misleading someone. It is something different.) It seems like allowing oneself to mislead, even if only when the misleading statements are sorta true in a sense, just not in the way they will be interpreted, in order to convince someone of something that is true, is rather dangerous. If such behavior were universalized, I think it would be rather bad for collective understanding. (What if someone U is trying to convince someone V of some statement P which U only believe is true because someone W misled U in to believe P in order to convince U of some other statement Q that is true, and then U says something misleading to V (leading V to believe a false statement R) in order to convince V that P ? Not good.)
mikeyouse 2y ago
Strong Rabois, "I'm literally saving lives by tweeting about HCQ and Covid" vibes.
- dvdhnt 2y ago
  [flagged]
  - sorcerer-mar 2y ago
    > HCQ combined with Zinc was a valid treatment for Covid. What do you mean by "valid?" > The drugs peddled by the people profiting from Covid were essentially HCQ and Ivermectin clones Which specific drugs "peddled" by which people are you talking about? > Both are considered essential medicines by WHO Yeah... for things other than COVID. Your squishy-to-the-point-of-meaningless language should be a red flag. To everyone else for sure, but even to you.
  - fragmede 2y ago
    No it wasn't. You're buying into some alt-health nonsense.
  - OutOfHere 2y ago
    As someone who had Covid multiple times, CQ+quercetin+zinc was a valid treatment, but it required very cautious dosing. As for ivermectin, it did not help at all, but if someone has worms, perhaps it would help them. And no, the other drugs are not clones, as their mechanisms of action are completely different. Facts matter.

mdip 2y ago

Interesting ... it's presented in the context of drugs for curing infections. I wonder if this is being used for other drugs. My curiosity stems from personal experience: I had Migraine headaches from age 17 to about 35. I was put on ancient seizure medication that's common prescribed for Bipolar[0] because this doctor had three other patients that it nearly eliminated Migraine from. It was fall, a time when I'd get about one a week. After five days of taking it, I had my first Migraine ... if you could call it that -- I could only identify that it was a Migraine by the aura; the pain was about 10% what I'm used to). Searching through the web, I found a forum that was filled with Migraine sufferers. Sure enough, there were a handful of people who swore by it. There were also a handful of people who it didn't work for. Looking at the more official sources, there was no indication that this drug could have any effect on Migraine; they listed all of the other off-label uses[1], but Migraine was not among them. This medication had been in the news several times (and on the front page, here[2]) over the last few years and a year ago (or so), I looked it up on the "official sources", again. It now indicated that it was prescribed for Migraine. It made me wonder ... how are things like that figured out/communicated down-stream? Is it entirely informally amongst doctors? I went to four different specialists before I found one who suggested this drug -- and he did so in a "half-hearted manner" not truly expecting it would work. It'd be nice if this was centrally tracked/managed as it might surface both "new uses for old drugs" and "new problems with old drugs." [0] Which I do not have. [1] It's rarely, if ever, prescribed for what it was originally approved for. [2] It's Depakote, I'm not being cagey for nefarious purposes, I just didn't want this to be a drug advertisement.

meew0 2y ago
Once drugs lose patent protection, it's difficult for them to gain approval for new indications, because drug approval procedures are extremely expensive and there's no patent holder left for whom it would make economic sense to spend all that money. So in cases like valproate for migraine, those drugs usually stay off-label long term. That makes them unattractive for doctors to prescribe, since they assume more liability if something goes wrong, and insurance companies are less likely to cover the drugs. The way information about off-label uses gets communicated is basically the same way as elsewhere in science: through scientific papers, conferences, textbooks, and the like. A doctor who discovers that their migraine patient does well on valproate might publish this as a case report. If there are many such reports, someone might do a randomized trial. Once there are many randomized trials, meta-analyses can be performed, and eventually, the information will end up in textbooks and medical school curricula. It takes a certain amount of agency for a doctor to stay up to date on the latest research; while medical boards tend to have certification requirements for CME (continuing medical education), these are usually quite lax, and a truly lazy doctor can probably just live their years without really learning anything new. At the same time, reading all new research that comes out is basically impossible, and even just trying to do this would risk always following the latest fads that later evidence might show to, in fact, be harmful. Every doctor needs to find their own middle ground here, and you as a patient must find a doctor that suits your own preferences.

navan 2y ago

Just today I read about this in the book "Who is Government" by Michael Lewis where he presents the case on how it can help find cure for rare diseases. You can read his article at https://www.washingtonpost.com/opinions/interactive/2025/michael-lewis-fda-who-is-government/ https://www.washingtonpost.com/opinions/interactive/2025/mic.... Also highly recommend the book.

deleted 2y ago
[deleted]
rvba 2y ago
That article has a horrible writing style. So much fluff and so litlle content.

adamredwoods 2y ago

I wonder how this is going (started 2013), because I have a hunch it will be chasing ghosts, mostly. Placebo affect is a factor here. I also wonder how many fake leads from "propaganda physicians" they get.

bluGill 2y ago
The real thing is can we (perhaps with new advances in statistics?) find places where doctors at the end of all known treatment try things at random and see if anything works. For rare symptoms it often isn't possible to run a proper controlled study (note that I said symptoms and not disease - often we are not really sure what is going on). So if we can give doctors a list "here is what someone else tried and or treatment Y seems to make things worse that is a clue. Eventually we can say that we don't know why, but X seems like your best shot even if it we can never get to real statistical significance. Doctors already have case studies which they (at least should) publish anytime they get someone who for whatever reason doesn't respond to standard treatment, or has something unknown. However it is hard for the next doctor to find any that might be relevant.
lenerdenator 2y ago
You don't know you're chasing ghosts until you start running. There's not much wrong with the system so long as it's used as a place to get ideas for clinical studies or absolute last-ditch attempts at saving lives. On occasion (like the Milwaukee Protocol for rabies), those last-ditch attempts do work. It's when people pretend there's no real investigation to be done that we get problems.
GuinansEyebrows 2y ago
Yeah, this seems like a worthwhile service, but I can't stop thinking about ivermectin.
- mschuster91 2y ago
  It became apparent really fast that ivermectin was effective... against a superinfection with parasites, which the reported success cases all had. But by the time it became apparent, the correction didn't spread nearly as fast nor wide as the original information. The problem is, most people lack the scientific literacy to understand how science works, and many newspapers have long since gutted their expert journalists.

jjtheblunt 2y ago

"Content current as of: 06/08/2020"

CharlieDigital 2y ago

Very cool seeing this show up on HN. FDA has a bunch of interested datasets like this that are full of interesting data points. During COVID, I actually wrote a small sample app that pulls info from this DB: https://www.covidcureid.com/ https://www.covidcureid.com/ And gave a talk on it: https://learn.microsoft.com/en-us/shows/azure-serverless-conf/surfacing-fda-covid-data-using-serverless-functions-and-cosmosdb-with-charles-chen https://learn.microsoft.com/en-us/shows/azure-serverless-con...

radicalbyte 2y ago
How viable would it be to mirror the set? Given that the US is having it's ISIS book-burning moment so the original sources are at risk :(
- CharlieDigital 2y ago
  Try emailing the team and see if you can get the data set: https://cure.ncats.io/resources/ehr-resources https://cure.ncats.io/resources/ehr-resources Otherwise, my code to extract the data is here: https://github.com/CharlieDigital/covidcureid/blob/main/server/data/fetch-data.js https://github.com/CharlieDigital/covidcureid/blob/main/serv...
  - Onawa 2y ago
    NCATS and other NIH data resource teams were heavily affected or completely dismantled during the latest reductions in force (RIFs). Getting data from certain areas inside HHS will be difficult to impossible for the foreseeable future.
- kens 2y ago
  Your concerns may be justified. The site says: "This repository is under review for potential modification in compliance with Administration directives."
  - mollyphelps 2y ago

shreezus 2y ago

There are so many interesting, off-label novel uses for drugs that have already been developed. Recently my wife & I adopted a kitten that developed FIP, a disease caused by a feline coronavirus that was nearly 100% fatal up until just a few years ago. Turns out, a drug developed by Gilead Sciences (GS-441524) which is the active metabolite of remdesivir, is remarkably effective at treating the disease. It's a nucleoside analog, so it essentially is a slightly modified adenosine molecule which disrupts the virus RNA replication process. Within 12 hours of the first dose our cat went from dying to making a full turnaround and complete recovery following treatment. For us it was truly a miracle drug, and it only gained awareness recently due to the COVID-19 pandemic [1]. It still isn't technically "approved" for this use case, but is prescribed off-label by vets as of 2024 once the FDA relaxed its position [2]. Folks needed to seek it out on the black market (and still do in some areas). [1] https://www.theatlantic.com/science/archive/2020/05/remdesivir-cats/611341/ https://www.theatlantic.com/science/archive/2020/05/remdesiv... [2] https://www.fda.gov/animal-veterinary/cvm-updates/fda-announces-position-use-compounded-gs-441524-treat-fip https://www.fda.gov/animal-veterinary/cvm-updates/fda-announ...