10 ms·
Hospitals and universities repurposing drugs at lower cost
- turtleyacht 4mo agoHow do people needing (and willing to risk) treatment hear about repurposing studies?
- giuliomagnifico 4mo agoI think in the same way they participate in other clinical trials.
- astura 4mo agoBig medical systems will post their clinical trails quarterly or so. If you have a big medical system near you you can sign up for emails. I imagine universities would have a mailing list too, if they regularly did clinical trials. You can also search here: https://clinicaltrials.gov/ https://clinicaltrials.gov/ I was a clinical trial participant once and it was a positive experience for me.
- bell-cot 4mo agoCommunities (on-line or off-line) of people who share your disorder, and maybe health care professionals who see many patients with your disorder.
- Aurornis 4mo agoSpecialists keep up with the latest research in their domains and talk with other specialists in their field. They usually know about these things before their patients discover them spontaneously. You can read a lot of published papers on PubMed by searching for a condition or drug. You should be aware that there are a lot of papers published that say disease A can be treated with drug or supplement B that fail to replicate if anyone else tries it. It takes some practice to recognize when a treatment represents a real trend as opposed to a single quack doctor looking for a status boosting publication with some questionable claims.
- oezi 4mo agoSuch studies are great but there is no regulatory pathway to extend the use of existing drugs for new indications of use without the consent of the manufacturer (or becoming a manufacturer yourself). This means such studies can give more clarity on which off-label use is beneficial but it can't be an officially allowed usage.
- boxed 4mo agoThat seems wild. Do you have a citation to back that up? And in what country/countries?
- amanaplanacanal 4mo agoI'm in the US, and there are a couple of wrinkles to this: insurance typically won't cover off label use, so patients end up paying the full cost of the medication, and if there is a big enough market, I believe companies can patent the new use even if the patents for the original use have run out. Doctors here are allowed to prescribe them though.
- bonsai_spool 4mo ago> I believe companies can patent the new use even if the patents for the original use have run out. This is not true > insurance typically won't cover off label use Generally not true but it can be the case, especially for expensive medications
- amanaplanacanal 4mo agoYes new uses of existing drugs can be patented: https://www.drugpatentwatch.com/blog/patenting-new-uses-for-existing-drugs-a-legal-and-strategic-analysis-of-drug-repurposing/ https://www.drugpatentwatch.com/blog/patenting-new-uses-for-...
- bonsai_spool 4mo agoThis is clearly made by an LLM and thus not a credible resource. From: https://pmc.ncbi.nlm.nih.gov/articles/PMC9336118/ https://pmc.ncbi.nlm.nih.gov/articles/PMC9336118/ "COM claims can be difficult to gain for repurposed compounds, as the patentee must somehow differentiate their patent claims over what is in the public domain and present data that the drug is a credible candidate for the new indication [41, 42]." citing 41 https://pubmed.ncbi.nlm.nih.gov/32241561/ https://pubmed.ncbi.nlm.nih.gov/32241561/ 42 https://pubmed.ncbi.nlm.nih.gov/30310233/ https://pubmed.ncbi.nlm.nih.gov/30310233/
- jawns 4mo agoI have been a supporter of Cures Within Reach, a nonprofit that focuses on repurposing drugs, especially for rare diseases. https://www.cureswithinreach.org https://www.cureswithinreach.org They have funded some important repurposed-drug studies for Huntingtons Disease, which runs in my family. For a disease like this, it's never going to make sense for major pharmaceutical companies to invest the effort to develop entirely new drugs, but by repurposing existing drugs, it gives people living with rare diseases a chance to ease symptoms.
- dmichulke 4mo agoI'm on my cell phone and I couldn't figure out what diseases can be treated on the site. I'd say it's donor focused and not patient focused
- notRobot 4mo agoNot exactly what you asked for, but this page lists their impact: https://www.cureswithinreach.org/about-us-repurposing-research-leader/our-impact/ https://www.cureswithinreach.org/about-us-repurposing-resear...
- unsupp0rted 4mo agoHave you looked into UniQure / Clearpoint Neuro ? Exciting stuff, if it gets FDA approved.
- petesergeant 4mo ago> For a disease like [Huntingtons], it's never going to make sense for major pharmaceutical companies to invest the effort to develop entirely new drugs This is ... not correct. Roche, Regeneron, and Novartis all have novel HD drugs under development in tandem with smaller labs (Ionis, Alnylam, and PTC respectively), and then smaller labs like uniQure and Wave Life Sciences do too. Novartis have already dropped $1bn on the partnership with a committed $2b more. In addition, there are a bunch of incentive schemes for diseases like HD: both the FDA and EMA have offered orphan-drug designation to therapies for HD, the FDA does expedited programmes and can offer RMAT designation for drugs like AMT-130. With some luck (which is always in short supply for HD treatments, sadly), people with the disease might be able to get a single-injection treatment in the next 12 months[0]. 0: https://en.hdbuzz.net/the-other-shoe-drops-uniqure-shares-plans-to-submit-licensing-application-with-the-fda-for-amt-130/ https://en.hdbuzz.net/the-other-shoe-drops-uniqure-shares-pl...
- ck2 4mo agothe thing is while something is better than nothing, new drug development is critical there is absolutely no cure for certain types of long-covid and me-cfs right now no repurposing any drug is going to cure it, they've tried everything after six years it will take a decade to have anything even in the pipeline and won't emerge from the USA because all medical and science research investment by the government has been destroyed by Russell Vought and Heritage Foundation JAK-STAT inhibitors will be a big treatment, not a cure, but they cost thousands per month in the USA because generics aren't allowed
- danans 4mo ago> the thing is while something is better than nothing, new drug development is critical > there is absolutely no cure for certain types of long-covid and me-cfs right now > no repurposing any drug is going to cure it, they've tried everything after six years Then repurposing should free up resources for new drug development for those conditions that it can't address. Sounds like a win-win, unless the goal is somehow not to most efficiently allocate resources to maximize health outcomes. But at least in the US, that's clearly not the goal.
- xenophenes 4mo agofascinating! I'm sure there's quite a bit that can be learned through appropriate research - pathways to solve problems that haven't been thought of before
- shevy-java 4mo agoThe prices of drugs in the USA are especially high. This is interesting because the USA claims to pursue a maximum capitalistic society - but if this were the case, you'd have competition in a free market. But you don't have that. You have a cartel (or rather more than one). A pure capitalistic society works on assumptions that are not real. People are often cheaters. This would have to be taken into account. But when you have an orange Al Capone in charge, it is pillage day. Even before the orange King you had heavily overcharged prices in the health care system. You need to realise that you have a mafia in charge that does not want to change this system. Why kill the cow that you can milk for free?
- MrBuddyCasino 4mo agoLook at the development of price and quality of something that is outside the regulated medical system, like eg Lasik, and everything within that system. Its like night and day. If we had proper competition and price discovery, things would be much better.
- Geeek 4mo agoOn the other hand, dental work, especially anything above basic filings, are prohibitively expensive. I'd say Lasik is the exception, not the rule.
- MrBuddyCasino 4mo agoAre you under the impression that dentists are under competitive pressure? The labour supply is artificially limited, similar to other doctor specialisations.
- mothballed 4mo agoAre you in the US? This is not my experience at all. I've paid in US <2000 for dental invasive surgery including general anesthesia straight cash. That's approaching prices for medical care in Mexico.
- Der_Einzige 4mo ago
- functionmouse 4mo agoRelated, one of my all time favorite articles: https://www.propublica.org/article/revlimid-price-cancer-celgene-drugs-fda-multiple-myeloma https://www.propublica.org/article/revlimid-price-cancer-cel...
- aaron695 4mo ago[dead]
- toomuchtodo 4mo agoThe Price of Remission - https://news.ycombinator.com/item?id=43925396 https://news.ycombinator.com/item?id=43925396 - May 2025 (93 comments)
- indoordin0saur 4mo agoThis was a good read, thanks for sharing. I feel like the best way to fight this, if I was the government, would be to stop enforcing laws preventing patients and even doctors or hospitals from importing the overpriced pharmaceuticals from overseas generics manufacturers. Like the article points out, each pill costs no more than $0.25 to make. The goal wouldn't necessarily be to get everyone using overseas suppliers but to put downward pressure on the price gougers in the country.
- toomuchtodo 4mo agoHappy to help. The laws you refer to exist to juice pharma industry profits. Same reason it has been so hard to change the law to allow Medicare to negotiate drug prices. The price gouging is by design for line go up. Changing the law will take time (election cycles). If you cannot leave the US for a developed country that won't squeeze to extract from you while you're trying to meet your healthcare needs, importing your drugs that can be imported without US approval is your only path in the short term, or potentially traveling to obtain them and bring them back (roughly two-thirds of the entire U.S. population, ~200M people, live within 100 miles of a U.S. land or coastal border). (not legal advice, i am just an internet rando)
- iamjs 4mo agoIf you haven't watched this talk by Matt Might on Precision Medicine with MiniKanren, you will surely find it inspiring https://www.youtube.com/watch?v=Rt3XyeFHvt4 https://www.youtube.com/watch?v=Rt3XyeFHvt4
- photochemsyn 4mo agoIf every drug created with taxpayer dollars at government-funded research institutions was open-sourced, there would be a collapse in monopoly control of drug manufacturing and that would lower prices significantly. The question is then, if corporations can no longer acquire IP rights to drugs created by taxpayer-funded research programs and transferred to their exclusive control (eg if Bayh-Dole is repealed in the USA), who will invest in clinical trial costs that need to be recouped via a period of inflated pricing? The answer is government-funded, transparent, and statistically-robust clinical trials of drugs. Once a clinical trial is complete, private manufacturers can compete to produce the drugs at the lowest price by optimizing their manufacturing pipelines against a final product standard regulated by the FDA. If they want to run their own R & D divisions for drug development outside the taxpayer-financed university system to generate exclusive private patents, they certainly can - on their own dime. That’s an investment decision. If you need to review why this government-linked, tightly regulated system is needed for drugs with clinical effects, just look up ‘patent medicine disasters of the early 20th century’.
- parineum 4mo agoThis all assumes that the government will do an equal or better job spending money than companies that rely on spending that money well to exist. What will actually happen is that the government department of repurposing drugs will be efficient once and then get their budget reduced and never be efficient again. Next time they'll make sure to spend every last cent and not worry about the over budget boondoggle that's three years late because their job isn't to get stuff done, it's to make sure politicians can say their doing something on the campaign trail.
- photochemsyn 4mo agoNotice I was sure to include ‘revival of corporate R & D divisions’ in the argument? Bell Labs is the archetype - if corporations can do a better job of applied R & D, let them. If corporations are upset about publicly funded research generating open-source discoveries that upset the monopolistic apple cart, that’s not an argument about improving efficiency - that’s an argument about maximizing profits and investor return, not for efficient new drug discovery or old drug repurposing. The real question is, what is the metric of ‘success’ - improved public health for the entire population at low cost, or bloated returns for pharmaceutical investors?
- dabinat 4mo agoI’m currently on Spravato, which is fully emblematic of how broken the incentives in the US healthcare system are. Spravato is esketamine - a modified version of ketamine. Ketamine is made up of mirror image molecules and esketamine is the right-handed molecule. They did this because ketamine is off-patent so they needed to modify it in order to patent it, however there is evidence that esketamine is a less effective treatment than ketamine. It’s very cheap for me but my insurance company pays about $17k a month for this treatment. Ketamine would be a more effective treatment that would be super cheap for them, but they don’t do it because it’s not FDA-approved. So they’re paying a fortune for a less effective treatment. It would be in the insurance companies’ interests to band together to fund the research so they can save huge amounts of money in the long term but they do not do this.
- pkaye 4mo agoSo in Ketamine approved as a treatment in other countries but not in the US?
- tyre 4mo ago> It would be in the insurance companies’ interests to band together to fund the research so they can save huge amounts of money in the long term but they do not do this. Insurance companies do not want cheaper care. In the US, insurance companies must spend 80% of premiums on care. So if you pay $1k/mo, they have to pay out at least $800/mo in care. (Not to you specifically, but averaged out across all subscribers.) This is a cap on their potential profits. They always have to pay out 80% of premiums for care, so how do they make more money? Well, imagine care is twice as expensive. Instead of paying $800, they have to pay $1600. That sounds worse, but, instead of $200/mo, they now $400/mo for themselves! So, no, paradoxically, it is not in the interest of people paying for the treatment to save money. Quite the opposite.
- ttoinou 4mo agoThey operate with similar supply and demand constraints and competition, even with prices increasing
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- atourgates 4mo agoI have a little insight here from working with ophthalmologists. When the article mentions "using a cancer drug to treat a leading cause of blindness" it's talking about using Bevacizumab (brand name Avastin) to treat macular degeneration. Avastin and Lucentis are molecularly the same drug. The difference is that Avastin isn't packaged to be injected into eyeballs, and Lucentis is. Also, Avastin costs about $50/dose, and Lucentis costs around $1,500/dose. There are compounding pharmacies that will repackage Avastin into a format that can be injected into eyeballs. However, many ophthalmologists are hesitatnt to use Avastin because that process introduces the potential for contamination. Not that it happens frequently, but every ophthalmologist I know lives in fear of introducing an infection into their patient's eyeballs. And what level of risk is worth saving $1,450 per dose on an injection? 1/100? 1/1000? I know at least one ophthalmologist who would use Avastin, but would culture a sample from every batch she got from the compounding pharmacy, and had at least one batch that cultured bacteria. Assumedly, if she hadn't, every patient she injected with that batch would have been at risk of contracting endophthalmitis, and endophthalmitis is no joke. Not infrequently, it can mean losing vision. I know several of that ophthalmologist's colleagues who had been using compounded Avastin to try and save their patients money, stopped after that incident. I don't really have a conclusion beyond "drug pricing is insane and the issue is complex for providers."
- unacorner 4mo agoCompounding pharmacies can get injectibles wrong in a deadly way. Many families are still waiting for justice after the MECC pharmacy caused the deaths of 64 people: https://en.wikipedia.org/wiki/New_England_Compounding_Center_meningitis_outbreak https://en.wikipedia.org/wiki/New_England_Compounding_Center...
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- thombat 4mo agoThis note in that WP link is wild: "On July 7, 2021, Barry Cadden's original 9-year sentence was increased to 14.5 years. An appeals court court decision required the trial judge to consider patients, and not only hospitals, as victims of the crime." The law is always more complex than a layman like me thinks, questions of standing, etc. But I would have simply assumed that the patients hurt and killed would naturally be counted among the victims and not just the organisations left out-of-pocket.
- g42gregory 4mo agoYes, but it's really tough. I read that 50% of Stanford Medical School budget comes from Big Pharma. It's really hard to get the message out. I believe Pharma (the biggest advertiser on Google) is influencing Google search results, among other things. Here is a site that focuses on COVID and Cancer: https://imahealth.org/ https://imahealth.org/
- wodenokoto 4mo agoWhat is repurposing drugs?
- heathrow83829 4mo agouniversal health care can be offered even in 3rd world countries but they're really smart about keeping costs low. they drastically cut the costs of medical service by just offering one or two generic drugs bbought in bulk from china and india rather than all those custom expensive drugs that do the same thing. it does the same thing but at a much lower cost