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Siebe

@siebepersists.bsky.social

Be kind Be rational Protect democracy Govern AGI Cure ME/CFS & Long Covid

102 Followers  |  241 Following  |  118 Posts  |  Joined: 18.11.2024  |  1.9669

Latest posts by siebepersists.bsky.social on Bluesky

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The impact of public basic research on industrial innovation: Evidence from the pharmaceutical industry While most economists believe that public scientific research fuels industry innovation and economic growth, systematic evidence supporting this relatโ€ฆ

Sources:
Toole (2012) - www.sciencedirect.co...

Azoulay et al. (2019) - academic.oup.com/res...

04.09.2025 14:02 โ€” ๐Ÿ‘ 0    ๐Ÿ” 0    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
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This was inspired by this blog post by @atelfo
with a long list of interesting questions about biotech,
atelfo.github.io/202...

and the answer to 1 question by @mattsclancy citing the 2 papers I used here

04.09.2025 14:01 โ€” ๐Ÿ‘ 1    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0

Last, please bear in mind that these were hastily created calculations (limited spoons), and I may have misunderstood something. I didn't even read the papers!

I converted the Azoulay patent amount into drugs

Also, in my interpretation here, there are no diminishing returns.

04.09.2025 14:01 โ€” ๐Ÿ‘ 1    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0

The research shows significant spillover effects. In fact, more patents (2.2) were filed for *other* indications, than for the original indications for which the NIH grants were (1.4)

LC research is especially likely to spill over to ME/CFS! But it can also be other research!

04.09.2025 14:01 โ€” ๐Ÿ‘ 0    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0

The picture looks pretty bleak for ME/CFS. We definitely need more funding for it!

Also, improvements in research quality and improvements in market incentives would significantly improve the # of expected drugs.
x.com/PatientPersist...

And there is a silver lining:

04.09.2025 14:01 โ€” ๐Ÿ‘ 0    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
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Long Covid had received cumulatively about $1.8B from the NIH, that's about $1.4B in 2010 dollars

The models predict 2.02 to 3.31 drugs, based on just this amount. In 17-24 years after funding though..

04.09.2025 14:01 โ€” ๐Ÿ‘ 0    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
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So, where do ME/CFS and Long Covid place on this?

ME/CFS has received, 2008-2024, only a paltry $157M from the NIH.

Adjusted for inflation, that's ~$137M in 2010 dollars.

Only 19-32% of the way to a single approved drug

04.09.2025 14:01 โ€” ๐Ÿ‘ 0    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
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Azoulay et al. (2019) find that $10 million in public funding yields 2.7 new patents (though only 1.4 in the same disease area!)

Only 1 per 116 patents in their database is linked to a successful drug. So, $430 million in cumulative public funding needed for 1 drug approval

04.09.2025 14:01 โ€” ๐Ÿ‘ 0    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
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Toole (2012) found that 1% increase in NIH funding increases new drugs (17-24y later) by 1.8%. Or about $706M in 2010 USD for 1 drug approval
www.sciencedirect.co...

04.09.2025 14:01 โ€” ๐Ÿ‘ 0    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
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How much does public research funding affect drug development & market success?

Two papers have looked at this (h/t @mattsclancy @Atelfo ).

Based on these, I ran some quick calculations for ME/CFS and Long Covid

๐Ÿงต

1/

04.09.2025 14:01 โ€” ๐Ÿ‘ 1    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0

@jonfavs.bsky.social @chenoweth.bsky.social @mattyglesias.bsky.social @natesilver538.tweet.pub

18.06.2025 12:05 โ€” ๐Ÿ‘ 0    ๐Ÿ” 0    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0

Other numbers that seem high:
San Francisco - 100K
Seattle - 70K
San Diego - 60K

18.06.2025 10:58 โ€” ๐Ÿ‘ 0    ๐Ÿ” 0    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
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- 100K for Chicago. I looked at some footage and it's hard to get a full picture, but 10-20K seems more plausible to me
m.youtube.com/watch?v=MKvt...

www.mapchecking.com#bAAAAQOuIJ0K...

18.06.2025 10:58 โ€” ๐Ÿ‘ 0    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0

- 200K for NYC. Source claims 25-50K
(This has been corrected to 50K)

18.06.2025 10:58 โ€” ๐Ÿ‘ 0    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
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- 200K noted for LA. Aerial footage suggests something like 20-40K
m.youtube.com/watch?v=Fvgt...

www.mapchecking.com#bAAAAQAQ4CEI...

18.06.2025 10:58 โ€” ๐Ÿ‘ 0    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0

The most egregious:
- 500K noted for Boston as the Boston Pride coincided with the protest, and Pride organizers claim they had 1M attendees. 25-50K seems more reasonable, and last year (no protest), they also claimed 1M attendees, so that doesn't support 500K for the protest

18.06.2025 10:58 โ€” ๐Ÿ‘ 0    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0

I already left comments on their spreadsheet yesterday saying that many numbers were greatly and obviously inflated. @gelliottmorris.com pushed out these claims based on bad data

๐Ÿงต

18.06.2025 10:58 โ€” ๐Ÿ‘ 0    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 1

Looks like we have very different views on how the world works

15.06.2025 15:12 โ€” ๐Ÿ‘ 0    ๐Ÿ” 0    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0

You realize that drugs cost >$1B to develop, per drug? Who's going to make that investment if they can't make money off it?

15.06.2025 11:28 โ€” ๐Ÿ‘ 0    ๐Ÿ” 0    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0

Yes it's definitely a big lever, and I hope that AI peer review will be able to lift quality

15.06.2025 10:12 โ€” ๐Ÿ‘ 1    ๐Ÿ” 0    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
Preview
3 Levers to solve a disease โ€‹โ€‹โ€‹This was originally written as a quick comment on the new podcast about medical innovation called Hard Drugs by Works in Progressโ€‹โ€‹โ€‹.

open.substack.com/pu...

14.06.2025 17:54 โ€” ๐Ÿ‘ 0    ๐Ÿ” 0    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0

I wrote up some quick thoughts on the different levers we can pull to solve a disease:

1. Research quantity (increase funding)
2. Research quality
3. Market incentives

Seems to me that patient advocates tend to focus on #1 and neglect #3.

(Link in reply)

14.06.2025 17:54 โ€” ๐Ÿ‘ 1    ๐Ÿ” 0    ๐Ÿ’ฌ 2    ๐Ÿ“Œ 0
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I don't like the BSky Discover algorithm. It's showing so much irrelevant stuff to me, and not taking my feedback into account enough: here's 6/7 irrelevant

27.05.2025 07:08 โ€” ๐Ÿ‘ 0    ๐Ÿ” 0    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0

Okay yeah that seems good :)

28.04.2025 06:45 โ€” ๐Ÿ‘ 2    ๐Ÿ” 0    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0

Please don't report anecdotes from people in the trials btw. It's bad for trials

25.04.2025 06:38 โ€” ๐Ÿ‘ 6    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
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Okay but they didn't have to make fun of your height like this ๐Ÿ˜‚

23.04.2025 08:29 โ€” ๐Ÿ‘ 2    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
Rekenvoorbeeld (verzonnen cijfers):

100 huizen zonder aanpassingen = โ‚ฌ100/stuk
Meteen bouwen met aanpassingen = + โ‚ฌ5/stuk
Eenmalige aanpassingen = โ‚ฌ20/stuk

Als er 5 huizen achteraf worden aangepast, kost dat 100x100 + 5x20 = 10.100

Als alles meteen wordt gebouwd met aanpassingen, kost dat 100x105 = 10.500

Ik zeg niet dat de cijfers per se negatief uitkomen, maar zonder cijfers kunnen we niet stellen wat een beter beleid is! 

Sterker nog, als de ontwikkelaar de huizen slechts kan verkopen voor 103, dan wordt er helemaal niets gebouwd! Dit is vaak de reden waarom sociale huurwoningen niet gebouwd worden.

P.S. ik heb zelf ook baat bij een aangepaste woning

Rekenvoorbeeld (verzonnen cijfers): 100 huizen zonder aanpassingen = โ‚ฌ100/stuk Meteen bouwen met aanpassingen = + โ‚ฌ5/stuk Eenmalige aanpassingen = โ‚ฌ20/stuk Als er 5 huizen achteraf worden aangepast, kost dat 100x100 + 5x20 = 10.100 Als alles meteen wordt gebouwd met aanpassingen, kost dat 100x105 = 10.500 Ik zeg niet dat de cijfers per se negatief uitkomen, maar zonder cijfers kunnen we niet stellen wat een beter beleid is! Sterker nog, als de ontwikkelaar de huizen slechts kan verkopen voor 103, dan wordt er helemaal niets gebouwd! Dit is vaak de reden waarom sociale huurwoningen niet gebouwd worden. P.S. ik heb zelf ook baat bij een aangepaste woning

23.04.2025 08:10 โ€” ๐Ÿ‘ 0    ๐Ÿ” 0    ๐Ÿ’ฌ 2    ๐Ÿ“Œ 0

Lijkt me handig om de baten af te wegen tegen de kosten, nietwaar?

23.04.2025 06:36 โ€” ๐Ÿ‘ 0    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0

Ah thank you other Chris Ponting!

22.04.2025 20:33 โ€” ๐Ÿ‘ 1    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0

@chrisponting.bsky.social
It would be very valuable if this dataset were improved screening all 1,455 cases for PEM & formal criteria.

This is possible, but resource-intensive

(Also, the data is from 2006-2010)

22.04.2025 18:43 โ€” ๐Ÿ‘ 1    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0

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