[HN Gopher] Cure ID App Lets Clinicians Report Novel Uses of Exi...
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Cure ID App Lets Clinicians Report Novel Uses of Existing Drugs
Author : throw0101d
Score : 56 points
Date : 2025-04-10 22:34 UTC (4 days ago)
(HTM) web link (www.fda.gov)
(TXT) w3m dump (www.fda.gov)
| mdip wrote:
| 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 wrote:
| 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.
| smeej wrote:
| I wonder if some sort of coalition of compounding pharmacists
| might be up for making and retaining a repository. They at
| least make _some_ money by helping would-be patients take
| these drugs, right? So even if it 's nothing like Big Pharma
| money, I can't really think of anybody who'd have a better
| chance to benefit from promoting off-label use cases for out
| of patent drugs than them.
| dylan604 wrote:
| > 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.
|
| This is precisely why I think a gov't run research effort is
| the right way to handle this. You don't want to grant a new
| patent on the existing drug just because of new use of it.
| That would prevent the generics being used for the original
| purpose. So if the bigPharma company that created it for
| original purposes does not want to spend money researching
| alternate uses, then allow the gov't direct the research in
| the name of keeping its citizens healthy.
|
| Unfortunately, that doesn't really stand up as a great
| solution with using the current administration as an example
| of what happens when you get anti-science mindsets in charge
| of things. It also helps to have a gov't that is empathetic
| for its citizens which does not always happen.
| meew0 wrote:
| Yes, in fact, most of the types of research I mentioned,
| where random people at hospitals do small trials on
| existing medications, is going to be partially government
| funded.
|
| But care must be taken to avoid the tulip subsidies problem
| [1]: the barriers to drug approval are regulatory, not
| natural. If a drug regulatory agency sets high requirements
| for approval and another governmental agency must do
| expensive work to satisfy these requirements, there is a
| risk that costs go out of control without any real benefit.
|
| Instead, my favoured solution would be to significantly
| relax regulatory requirements in cases like this where a
| drug has already been proven to be safe both in the
| original approval trials and in years of real-world use,
| such that when trials and meta-analyses exist that suffice
| to convince the medical establishment of a drug's safety
| and efficacy for a new indication, these would also be
| enough for the drug to gain approval for that indication.
|
| [1] https://slatestarcodex.com/2015/06/06/against-tulip-
| subsidie...
| LorenPechtel wrote:
| Yeah, sounds like they got something right.
|
| Real world, sometimes a doctor will think up a novel use of the
| effect of a drug. And sometimes they'll throw stuff at the wall
| and see what sticks. When you don't have a good answer this can
| be sane medical practice. But there should be a requirement of
| reporting it to something like this database.
| GuinansEyebrows wrote:
| I'm in the same boat with propanalol - my doctor told me it was
| "the worst blood pressure medication available, but
| surprisingly effective at preventing migraine symptoms (as well
| as physical symptoms of anxiety)".
| navan wrote:
| 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/mic....
|
| Also highly recommend the book.
| rvba wrote:
| That article has a horrible writing style. So much fluff and so
| litlle content.
| adamredwoods wrote:
| 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 wrote:
| 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 wrote:
| 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 wrote:
| Yeah, this seems like a worthwhile service, but I can't stop
| thinking about ivermectin.
| mschuster91 wrote:
| 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 wrote:
| "Content current as of: 06/08/2020"
| CharlieDigital wrote:
| 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/
|
| And gave a talk on it: https://learn.microsoft.com/en-
| us/shows/azure-serverless-con...
| radicalbyte wrote:
| 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 wrote:
| Try emailing the team and see if you can get the data set:
| https://cure.ncats.io/resources/ehr-resources
|
| Otherwise, my code to extract the data is here: https://githu
| b.com/CharlieDigital/covidcureid/blob/main/serv...
| Onawa wrote:
| 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 wrote:
| Your concerns may be justified. The site says: "This
| repository is under review for potential modification in
| compliance with Administration directives."
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(page generated 2025-04-14 23:01 UTC)