Hospitals and universities repurposing drugs at 90% lower cost

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ggiuliomagnifico about 4 hours ago 46 commentsRead Article on kcl.ac.uk

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jawns•about 3 hours ago

I have been a supporter of Cures Within Reach, a nonprofit that focuses on repurposing drugs, especially for rare diseases. 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.

petesergeant•36 minutes 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-pl...

dmichulke•about 2 hours ago

I'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•about 2 hours ago

Not exactly what you asked for, but this page lists their impact: https://www.cureswithinreach.org/about-us-repurposing-resear...

unsupp0rted•about 2 hours ago

Have you looked into UniQure / Clearpoint Neuro ?

Exciting stuff, if it gets FDA approved.

functionmouse•about 1 hour ago

Related, one of my all time favorite articles: https://www.propublica.org/article/revlimid-price-cancer-cel...

oezi•about 4 hours ago

Such 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.

intrasight•about 2 hours ago

There tens of millions of people being treated off-label.

oezi•about 2 hours ago

The doctors are assuming liability or let the patient sign waivers, which I guess is fine. But the lack of a pathway prevents a lot of commercial possibilities. For instance it is almost impossible to build a business around supporting off-label use cases (for instance selling necessary accessories).

jnovek•about 1 hour ago

I have some difficult-to-treat medical issues and about 1/3 of the handful of pills I take every day are off-label. I think when you get into less common medical concerns off-label use becomes much, much more frequent.

E.g. gabapentin is an anti-seizure medication that has been found to reduce neuropathic pain as well. It has shot up to the 5th most prescribed medication in the last decade as it has replaced long-term opioid use for new chronic neuropathic pain patients. This is 100% off-label and is prescribed by everyone from NPs all the way up to neurosurgeons for this purpose.

I’ve never been asked to sign a waiver and I can’t imagine that for-profit hospitals would allow their doctors to prescribe off-label medications willy-nilly if they represented big liability. (I don’t know this for sure, this is just what my experience implies.)

Aurornis•about 1 hour ago

Off label prescribing is extremely common.

This isn’t a new or novel concept. Doctors manage patients with off-label prescriptions all day long.

forgetfreeman•about 2 hours ago

The business is already built given the drug in question is already being manufactured and available on the market.

uberex•about 2 hours ago

Can confirm. LDN user here.

cjbgkagh•about 2 hours ago

Also a LDN user, that drug saved my life. I bought it from a shady dude online, the initial effect was so strong that I thought they shipped me meth instead - that wore off after a week but the lifting of the brain fog persisted.

vidarh•about 3 hours ago

The article points out that it is typically after patent expiry that the universities and hospitals start looking at repurposing.

oezi•about 2 hours ago

The patents aren't hindering off-label use. The hinder commercial exploitation by others.

vidarh•about 2 hours ago

Yes, but that isn't relevant to what happens after the type of trials described in the article, which tends to happen when the patents are no longer relevant. As the article points out, while the drugs are patented, the manufacturers themselves are generally very interested in repurposing because it broadens their market. The article is discussing trials that mostly happens once the patents have expired.

ktallett•about 4 hours ago

This isn't completely true at least in the UK. It is simply that the manufacturer is no longer responsible legally. The GMC allow prescibing of unlicensed meds. However the change needs to be made to the pathway. So many issues in the NHS has been due to pathway problems.

boxed•about 4 hours ago

That seems wild. Do you have a citation to back that up? And in what country/countries?

amanaplanacanal•about 2 hours ago

I'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.

Aurornis•about 1 hour ago

> insurance typically won't cover off label use

I’m in the US. This is not true.

Insurance will have prior authorization rules for certain drugs that are expensive that require the doctor to submit documentation of the condition, but in most cases the common medication is simply covered if prescribed. The insurance company does not receive documentation of every condition for every prescription to determine if the prescription is on label or off label.

Insurance companies can and do also support some off label treatments that are commonly used under their prior auth requirements.

I don’t know why there are so many comments in this thread making confident assertions that off label prescribing or insurance or so uncommon. This happens all day long at doctors offices and pharmacies.

jpk2f2•30 minutes ago

Insurance absolutely covers off label use. And depending on the area of medicine, off label use can be incredibly common (see cardiac pediatrics).

bonsai_spool•about 2 hours 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

turtleyacht•about 4 hours ago

How do people needing (and willing to risk) treatment hear about repurposing studies?

Aurornis•about 1 hour ago

Specialists 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.

giuliomagnifico•about 4 hours ago

I think in the same way they participate in other clinical trials.

astura•about 3 hours ago

Big 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/

I was a clinical trial participant once and it was a positive experience for me.

bell-cot•about 2 hours ago

Communities (on-line or off-line) of people who share your disorder, and maybe health care professionals who see many patients with your disorder.

xenophenes•about 3 hours ago

fascinating! 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

ck2•about 3 hours 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

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

shevy-java•about 2 hours ago

The 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?

wk_end•about 2 hours ago

> This is interesting because the USA claims to pursue a maximum capitalistic society

No it doesn't. This is silly.

Drug prices in the US are high for non-generic drugs because patent law gives the patent holder an artificial government-granted monopoly, which is blatantly not "pure" or "maximum capitalistic".

Generic drugs - where the free market does apply - in the US are as cheap or cheaper than in other countries. See [0]:

  U.S. prices for brand-name originator drugs were 422 percent of prices in
  comparison countries, while U.S. unbranded generics, which we found account for 90
  percent of U.S. prescription volume, were on average cheaper at 67 percent of
  prices in comparison countries, where on average only 41 percent of prescription
  volume is for unbranded generics.

[0] https://pmc.ncbi.nlm.nih.gov/articles/PMC11147645/

vjvjvjvjghv•8 minutes ago

[delayed]

none2585•36 minutes ago

I believe you two are arguing the same thing. Maybe the poster could have better worded it "general thought among most people is that the USA ..."

Because you are both absolutely right.

Aurornis•about 1 hour ago

> This is interesting because the USA claims to pursue a maximum capitalistic society

I don’t know why you think this. The US is not a maximally capitalist society. The reason drug prices are so high is due to regulations restriction who can manufacture them due to government-granted temporary monopolies through patent law.

If the US was maximally capitalist it would be a free for all with no patent protection.

vjvjvjvjghv•7 minutes ago

[delayed]

bluGill•about 2 hours ago

The US is not a capitalist society, it is a liberal society. Capitalism is a consequence of that but it isn't the reason.

MrBuddyCasino•about 2 hours ago

Look 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•about 2 hours ago

On the other hand, dental work, especially anything above basic filings, are prohibitively expensive. I'd say Lasik is the exception, not the rule.

mothballed•7 minutes ago

Are 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.

MrBuddyCasino•about 1 hour ago

Are you under the impression that dentists are under competitive pressure? The labour supply is artificially limited, similar to other doctor specialisations.