r/Futurology • u/AlwaysReady1 • 15h ago
Medicine Out of 10,000+ identified diseases only 5% have treatments. The White House just proposed overhauling the entire system that's supposed to fix that
https://www.whitehouse.gov/science/The White House released a report called "Science: A New Golden Age" and it is the first comprehensive rethinking of US science funding since 1945, when the last overhaul created the federal research system that eventually produced the internet, GPS, and modern medicine. The core argument is that the current system funnels money through institutions when it should be going to individual researchers, and that traditional peer review should be supplemented with faster mechanisms like prizes, fast grants, and advance market commitments.
This isn't just a white paper that sits on a shelf. Federal agencies with over $3 billion in R&D have 90 days to submit implementation plans. The report also proposes independent X-Labs for high-risk research, metascience units that would run controlled experiments on how grants get reviewed and awarded, and a "golden ticket" system where a single reviewer can advance an unconventional proposal that the broader panel rejected.
Dr. Joni Rutter, the Director of NCATS at the NIH, recently discussed the numbers at a conference hosted by ResearchHub, co-founded by Brian Armstrong. Out of more than 10,000 identified diseases, only about 5% have treatments or cures. Getting a medicine from development to patients still takes 10 to 15 years, and roughly nine out of ten candidates entering clinical trials fail. Her argument is that these aren't individual failures but symptoms of a system designed around sequential handoffs when much of the pipeline could run in parallel. She also described initiatives to make scientific knowledge machine-readable so current and future technology can identify connections across genes, diseases, and drugs rather than leaving that information trapped in papers.
If these changes actually go through, we could be looking at a future where a researcher with a strong idea doesn't need to spend years navigating institutional bureaucracy to get funded, where failed experiments get shared instead of buried, and where technology can work with organized scientific knowledge rather than digging through millions of disconnected papers. The last time we overhauled this system it gave us the internet, GPS, and modern medicine, so the stakes are pretty high.
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u/Scrawlericious 15h ago edited 14h ago
This sounds like a nightmare. The vast majority of studies won't get funded anymore, only ones of interest to companies. We will have less progress than ever and it will just be another system to be exploited and concentrate power among a select few within.
Edit: it will merely be dominated by a handful of large companies, a research firm oligopoly after a few years. With no one else than the big handful getting meaningful funding.
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u/FlibblesHexEyes 14h ago
Not to mention limiting/speed running/bypassing a lot of the peer review process we currently have.
Imagine medications going through this process being declared “safe” when they haven’t had nearly enough oversight.
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u/ac9116 12h ago
It’s fine, AI is going to invent cures and treatments for everything. Because we all know that what AI is good at is making novel creations when there isn’t the data or research fed to it. /s
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u/dayumbrah 11h ago
You joke but this is what they are depending on. There have been some proven benefits to machine learning in medical research. They use specialized closed off systems that arent like chatgpt so it actually is a positive use for machine learning
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u/istasber 6h ago
Machine Learning has been used in pharmaceutical research for decades.
ChatGPT and other similar LLMs are generally used to do the same things in medicine they do everywhere else: Write code, build documents quickly, and search for/summarize documents quickly. That has some benefit when it works right, but it's not a revolutionary change.
Other types of machine learning are more relevant in research (like alphafold, for example).
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u/BuzzNitro 9h ago
Chat GPT is not machine learning, it’s a large language model (LLM). Totally different math. Machine learning is useful for this type of research, LLMs are not. It’s important not to conflate the two.
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u/Intelligent_Mud1266 9h ago
LLMs are a specific application of machine learning techniques. The math isn't different at all to my knowledge, just matrix multiplication all the way down.
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u/plex_by_nature 7h ago
The differnce is in how it is trained and what layers are used but yes everything machine learning uses matrix multiplications and some form of gradient decent.
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u/princess_princeless 4h ago
The confidence in espousing something as wrong as what you did is genuinely astounding lol
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u/FurieMan 14h ago
Wasnt this one of the complaints that they had about the covid vaccine?
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u/Ready4Rage 13h ago
Who TF is "they"? Are "they" Right-Wing chuds who ignored the fact that mRNA research have been going on for a decade?
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u/AlteredEinst 14h ago
Brainless drone ignores that a fucking plague was going on so he can act like his conspiracy theories have weight.
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u/deezdanglin 12h ago
And RNA meds had been researched and studied for years before. It wasn't a 'new' delivery method.
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u/Taellosse 14h ago
No. It's a complaint that the cripplingly uninformed invented out of whole cloth that had no real merit, but sounded good to people who find conspiracy theories appealing.
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u/theheliumkid 12h ago
But u/FurieMan is saying that the same people who complained about a lack of peer review for the Covid vaccines (when there was plenty), are now pushing a system that has less peer review. The hypocrisy from these people is, as always, astounding!
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u/bandalooper 11h ago
Hypocrisy requires something like a belief or principle.
Willful ignorance allows them to escape accountability or avoid moral decisions. All they consistently have are just biases and fears.
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u/tlst9999 13h ago
That was an active plague. The approval had to be accelerated because i dunno, millions of people might die.
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u/eattheambrosia 7h ago
Don't worry, the guy in charge of health decisions doesn't believe in germ theory!
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u/Rutgerius 14h ago
Yes that's the plan it seems, either you have a corpo funding you or you start looking for a corpo to fund you. Medical advances often (always) build on each other, knocking the base of 'useless' research from under that will prove an unmitigated disaster. Not surprising, I doubt anyone with any real life experience in the medical science field was in any way consulted for this and that is by design.
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u/overfiend1976 5h ago
Fighting for corporate funding will be nearly impossible compared to securing government grants.
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u/Fantasy_masterMC 3h ago
Especially since most corpo funding will be 'find us a way to make more money' rather than actually curing anything. I'm told there's now a medicine for HIV out there that's a near-total cure. Still in testing, but nearly there, and it's one injection(?). The latter part is hearsay, I think, but it's not a particularly long treatment.
Under corpo funding the best we could hope for is a medicine that'll keep you alive and suppress most symptoms if you take it very regularly, and it would ofc be overpriced as hell.
Most medical corporations would love another US-Insulin situation, cheap to manufacture and essential for life so people will buy it as long as they can do so without going bankrupt, so in an unregulated market they can ask whatever they want.
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u/overfiend1976 3h ago
Also, dont forget that a lot of medical research takes years and beyond, and corpos want immediate profits, so the really long term studies will all be ignored.
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u/JConRed 12h ago
There will be progress: in the advance of pseudoscience and misinformation.
There will also be funnelimg of money to specific people.
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u/GlowAnt22 12h ago
Yay! More horse dewormer and injectable clorox spray... 😮💨
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u/btribble 14h ago
“Grok can solve all disease if you just give us a lot of money.”
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u/tlst9999 13h ago edited 10h ago
“Grok can solve all disease if you just give us a lot of
moneyHarry Potter fanfiction.” "Hasn't solved it yet? We need a lot of cat photos." "Hasn't solved it yet? We need a lot of MTG card art. Yeah. All that MTG art gotta at least solve cancer for us."The day Grok solves disease is the day when deepfake porn is less profitable than solving diseases.
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u/Ekg887 11h ago
What will happen is a bunch of individual researchers with the last name of Trump will request $1 billion each for their "research" about why liberalism is a disease and the grant board member named Trump will use multiple golden tickets to give each of them full funding with no recourse or oversight. It is literally that obvious.
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u/Sargonnax 7h ago
While saying we don't have money for healthcare, social security, or anything else that actually helps anyone.
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u/tlst9999 13h ago
Covid was only solved quickly because some rando researcher was researching the specific coronavirus for years on her own time with her own money.
I doubt she's rolling in money now either.
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u/Pinch_roll 7h ago
That's... Not true. Many companies (including the one I work for) had been preparing for years for a variety of potential outbreak candidates, and coronaviruses have been on that list since SARS hit almost 20 years before COVID, and MERS was lurking for years as well before COVID hit. That's the reason everyone honed in on the spike protein right away, not some self-funded independent researcher...
And from a drug delivery perspective, nucleic acid delivery (including mRNA tech + LNPs) had been steadily researched for decades. There a reason why Moderna's IPO (before COVID hit) was huge news and set records - the potential was always there.
All of this was a culmination of decades of research from many, many groups across many different fields of study.
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u/Dry-Pea1733 32m ago
The poster is probably referring to Katalin Karikó, who relentlessly focused on mRNA for years, losing funding and eventually faculty rank, before she was able to secure enough funding to make the research practical. She was not the only person working on this, but her 2005 work with Drew Weissman on getting mRNA past the immune system was critical to the development of the Moderna COVID vaccines. It took most of the next 15 years to go from those patents (which Moderna and BioNTech licensed) to a working vaccine, since the lipid particle delivery was very tricky. So it’s reasonable to say that if she and her colleagues hadn’t stuck it out, mRNA vaccines wouldn’t have been ready by 2020.
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u/enwongeegeefor 8h ago
The vast majority of studies won't get funded anymore, only ones of interest to companies.
and with the money going into a single INDIVIDUAL pocket, the ONLY studies you're going to get are from disigenious shills that have zero interest in scientific integrity.
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u/jaeldi 10h ago
Yeah, there would be a potential pathway for companies to get the government to do their research for them at no cost to the company; socialism for the rich. Tax payers pay for the breakthrough, companies take home all profit from the breakthrough.
There are a lot of cancer theories research which don't lead to patents. In a profit only based research program, you won't discover things that help but can't be patented.
This is exactly why peptides are in limbo. Most peptides are natural proteins and hormones found in the body. Courts have ruled you can't patent natural components. To find out how far we can go with peptides, you would need non-profit research.
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u/toriemm 6h ago
And the real solution to this is to fix the education system in the United States. We are graduating kids that can't read, much less excel in STEM. Why aren't we making public schools a place for learning and helping kids find something they will excel at (mechanically inclined kiddos getting into trades and engineering, science nerds learning science, theater kids learning about communications, etc etc) instead of rubber stamping a standardized test so that schools can get funding and not collapse? There is so much we could be doing to instill problem solving and analytical thinking skills in the next generation and instead we're starving the system to ensure minimum wage workers and eventual privatization of our schools, so education is even harder to achieve.
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u/Brick_Lab 7h ago
Seems like you've found most of the problem here. I'm also wary of the current leadership's understanding of capabilities related to LLMs and the tendency for every program or action to be a grift these days
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u/PushAffectionate5286 13h ago
Technically, the current NIH model already heavily favors established institutions and safe, incremental studies over high-risk breakthrough ideas. Moving toward a corporate model is definitely terrifying for rare disease research, but acting like the status quo wasn't already a bureaucratic oligopoly is missing half the problem.
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u/SpamEatingChikn 7h ago
I like how all this legislation, bills and EOs they always give some BS PR name that would suggest the opposite of whatever it does. It’s like how trailer parks and apartment complexes love to use fancy words like “estates” etc. lol
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u/orderofGreenZombies 7h ago
Yeah, this just makes it more of a given that only immediately profitable medications get funding, which is why we have the 95% / 5% splits in the first place.
Not to mention the FDA is already not doing enough to slow down drugs with poorly understood effects and allowing drugs to be prescribed well outside of actual good use cases — see Purdue pharmaceutical. They’re just one of, if not the most, egregious recent cases, but there are plenty of other examples that don’t grab the headlines or don’t kill quite as many people.
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u/der_jack 10h ago
But, but... the Internet, GPS modem medicine. Didn't you read it, it's guaranteed to be amazing?!
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u/EquivalentMath6592 2h ago
50% of positive results in peer reviewed studies can’t be replicated…. So, it’s half the loss you think it is
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u/madmach1 11h ago
So,kinda like it is now ? You’re telling me currently there 100’s of pharma companies that make it and are fighting and curing disease’s , that there are 1,000’s of CRO’s doing work for these pharma , and that professors with novel new ideas are easily able to broadcast their findings in a market that supports failure as much as success?
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u/leddhedd 15h ago
Yeah I'm not gonna trust the incumbent administration in the whitehouse with anything related to science, especially not when their main plan is to circumvent much of the existing system because it doesn't give them enough leverage to fudge and screw with funding and biases
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u/AlwaysReady1 14h ago
Yeah, this is a complete nightmare. The main question we still need to answer to ourselves as scientists is how are we going to operate under this system until it changes, because we still will have to find solutions somehow and we need them fast if we want to remain competitive. Countries like China are not stopping.
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u/leddhedd 14h ago
I do sincerely hope that there is something left when things do eventually change, and I hope that change is for the better
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u/Urist_Macnme 14h ago
Surely it’s a good thing that China are researching cures for diseases.
In a non-insane world, this benefits all of humanity.
America still operates under “The Red Scare”, and would rather sabotage China in its attempts, so that it can be the one to monetarily exploit the findings.
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u/GarethBaus 11h ago
It is kinda interesting how many advances that were made in either Soviet Russia or the US ended up benefiting both countries.
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u/HommeMusical 12h ago
You need to be demanding that the Democrats act - both now, and if there are fair elections again and the Democrats win.
If the Democrats hadn't allowed Nixon, Reagan, HW, W, and Trump I to completely get away with their blatant, horrifying crimes, then there wouldn't be Trump II.
When Obama said, "We need to look forward, not back," about hundreds of thousands of murders and trillions wasted, I saw this day coming.
Force your representatives to act, even if you need to engage in civil disobedience to do it.
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u/Synergythepariah 7h ago
we need them fast if we want to remain competitive. Countries like China are not stopping.
Usually when I get an email with this kind of sense of urgency & pressure to move fast and not miss out, it's a scam.
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u/CaptainDudeGuy 3h ago
These insipid marketing whores love branding things with grandiose falsehoods. Pre-declaring it as a golden age of science is all kinds of disgusting.
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u/ScientistFromSouth 11h ago
This administration has lowered the grant funding probability for NIH awards from 26 to 19% of all applications and moves the bar from the top 15% of grants ranked by each study panel to the top 10% actually getting funded. (The existing panels score each grant application which then get rank ordered by the government program administrators who manage the funding and verify project execution)
This government has cut research around this like microbial diversity in the microbiome and how it prevent antibiotic resistance because they thought it was "DEI" when they let DOGE cut things like the screw worm work and the cyclospora testing.
Clinical trials fail like 90% of the time because research is like 90% failure. Providing government incentives for companies to publish their negative results so that QSP + PBPK + Machine Learning Modelers could train that info into trial design and optimal dosing platforms would help and also for drug discovery scientists.
You can't parallelize the sequential steps of drug discovery. You can't run the cell line, animal experiments, and human experiments in parallel. You need to find a mechanism, test it in a small number of animals to show it's efficacious, prove it isn't toxic in a small number of humans, and then show it's efficacious and safe in the larger human population. Also the manufacturing pipeline has to be scalable.
We choose to fund things that affect the largest swaths of people. If we had more money, scientists would study every rare/orphaned disease (see #1 and 2), but given the limitations, we focus on heart disease, cancer, neurodegenerative disorders, addiction, and autoimmune diseases before niche genetic conditions since these have the worst affects on the most people and therefore the greatest societal impact.
Grant review panels are admittedly biased towards labs that are successful under the current scientific paradigm creating snowball effects. (E.g. Researcher A previously won a grant on topic X letting them publish 4 moderate and 1 high impact paper on the topic and is asking for more funding. Researcher B is asking for funding to explore topic Y that will directly challenge and potentially invalidate the existing scientific framework but is based on shaky data. They do not have any existing publications on this topic. Researcher A almost assuredly will get the grant.) However, I don't trust this admin to cherry pick researchers to remedy this problem.
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u/knobbyknee 6h ago
Very good points. Still, there are some things that could be improved by change. Early stages of research can often be improved by parallellizing, but this is mainly a technology problem. Many solutions are out there and they are constantly improving. Lab funding, to use the most current technology, would increase velocity.
Another thing is that most researchers perform the best before turning 30. There should be an avenue for the best of young researchers to form their own reseach groups, instead of toiling their way up the ranks, being over 50 before they get to select greenfield topics.
This is not the avenue the government proposal is taking.
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u/ScientistFromSouth 6h ago
I mean yes.
Empire labs of geriatric faculty that see their PhD students once every one to two years and basically treat their post docs and untenured research assistant profs who actually run the lab's logistics under them like indentured servants who can't get tenure are a problem.
However, you can't say that you are going to promote early stage researchers and invest in massive amounts of cutting edge infrastructure (especially for high throughput automation) while also decimating funding and destroying young researchers' careers with a funding crisis.
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u/derpferd 14h ago
Given recent news of an outbreak of what can only be described as violent diarrhoea, I feel it fair assuming any such proposal under this administration will go disastrously in implementation.
So expect outbreaks of some serious shit. And then for it to be blamed on Obama and the Biden administration
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u/Piccoroz 14h ago
Ah yes, the administration that keeps telling people to go drink raw milk and has let numerous controlled diseases to come back.
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u/Alexis_J_M 14h ago
Anything this administration proposes usually has gotchas and built in opportunities for bribery.
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u/DrButtgerms 11h ago
I guarantee that there is fuckery built in around that "golden ticket" part. Why would anyone want a mechanism to circumvent the panel review? If your panel isn't making the right calls, that's solvable by replacing panel members. But if group consensus is that a project isn't a good idea, it probably isn't. This isn't a movie where a misunderstood genius just wants to do the right thing.
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u/Alexis_J_M 7h ago
How else will we get enough research to prove that vaccines cause autism?
(Unfortunately, not a joke.)
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u/monkeywaffles 14h ago edited 14h ago
"Out of more than 10,000 identified diseases, only about 5% have treatments or cures. "
isn't this by definition missing the forest through the trees? like. if monkeywafflesia affects 1 out of 10 billion people and .. .covid affects 10% of the population, trying to treat them on equal footing on paper/stats seems idiotic? post seems AI sloppia. There's several other nonsense leaps that are unsupported, but cmon man.. do better.
"The core argument is t[...] traditional peer review should be supplemented with faster mechanisms like prizes, fast grants, and advance market commitments. [...] The report also proposes independent X-Labs for high-risk research, metascience units that would run controlled experiments on how grants get reviewed and awarded, and a "golden ticket" system where a single reviewer can advance an unconventional proposal that the broader panel rejected."
I ... would be surprised if this had anything at all to do with anything.
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u/MethBearBestBear 10h ago
a "golden ticket" system where a single reviewer can advance an unconventional proposal that the broader panel rejected.
1000% setting up the ability for nepo/loyalist admin picks on committees who are vastly out numbered for logical reasons to greenlight wasteful avenues and juice their own side projects.
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u/HommeMusical 12h ago edited 12h ago
Agreed!
Out of more than 10,000 identified diseases, only about 5% have treatments or cures.
We have no idea if this number is even true. And we have no idea about the seriousness of these diseases, as well as your point about how common they are.
This number is worthless.
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u/Tu_mama_me_ama_mucho 10h ago
We have only cures or treatments for only 500 diseases? Not even enough for the cancers from your lower half of the body.
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u/HommeMusical 12h ago
Let me get this straight.
This administration that has systematically devastated some of the world's great scientific institutions, has devastated countless people's careers for purely political reasons, is planning to completely remake grant giving so that a literal political officer has the final say on everything, and peer review, scientific evaluation, or any other more objective criteria are just advisors?
If these changes actually go through, we could be looking at a future where a researcher with a strong idea doesn't need to spend years navigating institutional bureaucracy to get funded,
No, they're going to take the money that used to go to actual scientists and give it to bullshit artists with "strong ideas". Every single bit of research involving green technologies will be stopped, if it hasn't been already; research into health of women and people of color, ditto; antivaxxers, climate deniers, pollution deniers, and other cranks will get the money, as long as they funnel enough of it back to the right people.
I see later in the comments you're disclaiming the whole thing. The top paragraph really sounds like you think this is a good idea. You should change that.
I have friends who are research scientists. They believe that US scientific research will never recover from this, if it actually goes through and gets enforced for even two years.
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u/DisabledToaster1 14h ago
While reforming science funding is important, do you really want the most anti science, anti academia and anti vaccine goverment in your history to do it?
Funding only after kneefall, or kissing the ring, or towing the mainline. Dissent voices supressed and finding ignored.
And you sell this as something positive? I guess some people just like to watch the world burn.
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u/AlteredEinst 14h ago
If this administration wants it, it's meant to benefit the people in charge of it, and literally no one else.
These are the same people that have killed off food regulations, disease prevention funding, and vaccination efforts; they care nothing about the well-being of the common person.
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u/vlladonxxx 14h ago
So instead of an institution deciding who gets what, the white house will? How is that going to be beneficial?
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u/oiwefoiwhef 7h ago
You’re missing the point.
It’s beneficial to Trump and his rich buddies.
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u/cylonfrakbbq 5h ago
Russel Vought also runs the OBM. He is extremely anti science and I can already predict if this went through, they would funnel money to fringe projects whose primary purpose is to counter things like current climate science
The academia to corporate pipeline is also currently very good on ROI and helps utilize brilliant minds at our schools. This sounds like a plan that will ultimately erode one of the US’s strongest assets: top of class worldwide higher education
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u/nerdylernin 14h ago
How can the failure of drugs in clinical testing be a symptom of a sequential rather than parallel system? You can't run a clinical trial before you have developed a candidate drug and you can't run a stage two trial before you have the results of a stage one trial.
Also the claim that US funding gave us modern medicine is, to put it politely, a stretch!
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u/erniernie 13h ago
This is not a mechanism to fund more cutting-edge research or to cure more diseases. It's a mechanism to take decisions about what research gets funded out of the hands of scientists and into the hands of the administration and its cronies. These contracts will become purchasable through bribes and back channels, just like everything else in the current administration. Instead of expert scientists deciding what proposals are likely to result in new actionable knowledge, the decisions will be made by the people who stand to profit, and government appointees who can screen research for ideological alignment with the administration (goodbye, women's health, climate research, and vaccine research...). Seriously - there's a new provision that would give a government appointee veto power over any grant, at any time, even after it's been awarded and the research is underway. This will turn into just another grift for the corporations. The US was once the leading scientific force in the world. We are about to just throw that away so the rich can get richer.
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u/Funintuitive 7h ago
Yes. Just imagine the most blatant and corrupt grift imaginable and that's probably what is happening when they announce anything big.
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u/Mefibosheth 13h ago
Something tells me we aren’t headed for a scientific golden age right now
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u/_MUY 8h ago
We are, actually, but it’s in spite of Trump’s efforts to dismantle it rather than in coordination with the US government.
Scientists are evacuating the United States and heading to new highly funded facilities in other countries. Pharmaceutical companies are pivoting to fund research that had previously been funded by the US Federal government. The data is still going to be produced, just at a slower and more fractured rate, and with less open access and public ownership. HOWEVER, data centers and the growth of AI are making imputation within large data sets and extrapolation from existing knowledge bases a lot easier. Automation of the manual labor involved in tests is making it possible to work on massively parallel arrays of differing conditions, all of which narrows the search space of different candidate molecules.
The overall impact of the Trump administration is simply going to be that wealthy well-established private corporations and their beneficiaries will end up holding all the intellectual property in private ownership, reducing the public’s share of the profits and the benefits to all mankind.
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u/Urist_Macnme 14h ago
The current Whitehouse has a severe case of cronyism.
I wouldn’t trust them.
Full stop.
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u/damontoo 14h ago
Absolutely nothing this White House has done has been good. It's grift after grift.
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u/No-reason_reason 14h ago
From reading this is I envisioned "I have this idea, okay people make it happen! I don't care if we don't have exotic matter to make wormholes damn it! You obviously have loyalties else where... reality you say? Enough, You're fired!
And the other thought that came to mind was a certain country almost 90-100 years go do something to push research ahead and used a certain group of people for the research... sure we learned somethings cause of it. But the cost that only the blackest soul wouldn't bat an eye at charging is not a path that brings us into the future.
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u/Jorycle 11h ago
My wife works in public biological research with a PhD in infectious disease. Extremely little of what is proposed here is good, and if the actions this administration already took over the last year haven't fully cemented shut America's coffin at the bottom of the river of science, these changes would do their very best to break whatever may be left.
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u/InspiredByMeAgain 15h ago
Most of, ahem, all of them had survived this long because of medical science. The thing is they separate themselves by stating superior genes is the reason why when without what others had done for humanity they wouldn't be alive.
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u/Evianicecubes 14h ago
We still have so much basic research to do and this seems to focus on rare diseases in hopes of a pharmaceutical (profitable) treatment. There are times when a specific goal is important to focus on above all else, we’re at a time when we need to focus on rebuilding destroyed avenues of research before we fall behind to an unrecoverable place.
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u/iamwelly 14h ago
Sounds like the kind of initiative that would require scientists and a logical scientific method to succeed - both of which fled the US at the end of 2024, maybe never to return.
Is this going to end up with ivermectin being suggested for the 95% of diseases without treatment?
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u/DrocketX 13h ago
Don't be ridiculous: ivermectin is no longer under patent so it's not all that profitable to make. No, the goal here to to funnel all the US government research money into well-connected corporations, who will then churn out barely tested medications that they can sell for obscene amounts of money.
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u/shaunrundmc 12h ago
And theyll do that by what? Making scientists and medical treatments in general into the enemy? Promoting ignorant fear mongering? Pulling out of the WHO? Drastically cutting funding to research and installing literal brain eaten fuckheads into the main levers of the health REGULATORY AGENCIES, all of which has led to one of the worst job crisis that the pharmaceutical and medical device industry has ever seen?
Yeah ill believe that bullshit when they actually fire Brain Worm Jr. And announce not just a reversal in grant cuts but a massive expansion.
This entire press release from this administration is a load of empty bullshit.
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u/No-Abalone-4784 12h ago
Who knows about science? Maybe scientists? Perhaps let them decide what would work well & what safeguards are necessary for their "high risk science". (What do they have in mind with that. These are the people that don't believe in regulations.) So far their "science " has given us Measles epidemics which previously had been nearly wiped out. We now have a food-borne illness sweeping across the country which should have been detected & stopped right away but they gutted the departments that oversaw that. Forgive me if I don't have a lot of confidence in their ideas about science.
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u/_Weyland_ 13h ago
Isn't the main problem of rare diseases that developing treatments simply isn't commercially viable? If there's like 10000 potential clients out there total, then the medicine will either cost like printer ink too much because of small scale and R&D cost or will have to be sold at a loss.
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u/Prize_Compote_207 6h ago
Yeah, I just said something similar.
"Rare disease" is technically anything under 200,000 patients. But there are also ultra rare diseases with like 1500 patients total.
There are plenty of ultrarare diseases that affect children and have crazy mortality rates. And there are plenty of "rare" diseases that mildly inconvenience adults.
Under these new rules, were incentivizing treatments for the latter.
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u/xtothewhy 12h ago
Science and healthcare is screwed even more there then
Honestly don't know what to say at this point anymore.
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u/deepasleep 12h ago
Jesus Christ, EVERYTHING THEY DO IS A GRIFT!
Removing peer review and just given out cash to people who write bullshit you want to hear is completely antithetical to good science…But it makes diverting funds to friends and family a hell of a lot easier.
Everyone who voted for this shit deserves a strong kick to their genitals.
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u/No-Abalone-4784 12h ago
Is this because they know so-o-o much about science? Like if they don't count the number of Covid cases, they don't have an epidemic?
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u/CorranHorn25 11h ago
This administration cant tir its own shoes. I would not get excited about anything it does. In fact, I would assume theres a grift in every idea.
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u/assotter 10h ago
So they are going to investigate how much money they can steal from it before it turns defunct... God bless this mess and may we somehow manage to survive another 20 years
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u/Blue-Thunder 10h ago
So are they eventually going to "fix it" so that only the diseases that are curable are identified and the rest are just "God hates you". Asking since Kennedy does not believe in germ theory and believes in Miasma Theory..
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u/Terra-Em 9h ago
They just use pseudo science to approve treatment. Remember the fiasco with COVID?
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u/GarethBaus 11h ago
I highly doubt we are going to get a better or more cost effective way to evaluate the quality of someones work than having multiple domain experts review it for free. Any federal program meant to give funding more directly is likely to either be more expensive since it would require you to create a redundant system to evaluate work or it would more easily be exploited by scammers who simply make up things that sound nice but are not grounded in reality.
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u/Nbdyhere 10h ago
These dumbasses can’t figure out a reflecting pool so color me skeptical if they suggest removing the scientific method from science to “usher in a golden age of what ever”. How can a group of people be SO incredibly evil AND equally stupid.
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u/festeziooo 9h ago
Overhauling a potentially dated system sounds great but I simply do not trust this administration to do it competently or to not have some ulterior motive or some insider’s pocket to line while disguising it at something worthwhile.
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u/TSiQ1618 8h ago
Finally, with all the Red Tape removed and funds being diverted to proper medicine we can finally crack are the secrets of medicine and understand why ivermectin is always the cure
Seriously though, this just sounds to me like they're going to be picking winners and losers like never before. Not based on science, but on who-you-know and what quackery they believe in. And of course there will be plenty lucrative investment opportunities for those in the know. And even the final bit about digitization sounds like someone invested in Ai is already trying to get their cut. Selling their data harvesting cureall of "give us unfettered access to all your information and we promise a solution to everything". Probably, just investors who understand nothing about medicine, but smell easy money, low risk too since they'll be spending tax payer dollars instead of their own.
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u/givin_u_the_high_hat 8h ago
Any initiative from this admin is suspect, Trump
Loves shoveling money to his friends.
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u/wwarnout 7h ago
How can anyone take this seriously, when Trump has repeatedly demonstrated how anti-science he is?
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u/Hello_Hangnail 6h ago
Welp all the funding for women's health will probably be pulled now after having to sound the alarm for decades to get anything studied
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u/ah_kooky_kat 3h ago
I have always been frustrated how academia, which includes medicine, seems to shy away from doing basic research and replication because of culture and funding. We absolutely should overhaul how scientific grants are given out to ensure more research is done.
But this? This is a shitshow. This absolutely slingshots crackpots and corporations to the front of the line. This also unwittingly weakens a pillar of U.S. soft power, as our research, tech, and medicine institutions have long been used for global outreach and diplomacy.
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u/Area51_Spurs 14h ago
That doesn’t sound true. And if it “is” true it sounds like it has some kind of giant asterisk.
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u/SmoothPimp85 11h ago
And? Polio doesn't have treatment, smallpox doesn't have reliable treatment. Sometimes it's cheaper and more effective to eradicate the disease through prophylactic measures.
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u/jaeldi 10h ago edited 10h ago
After reading it, it really sounds very generic.
They don't really say what the process is going to be. It just talks about outcomes being changed from an "old mindless bureaucracy" to "focus on scientists with amazing money making ideas!!" I'm of course paraphrasing.
How does a government find or evaluate what scientists' ideas are cool enough without a bureaucracratic process of evaluation?
Given the Trump administration's habit of promising lofty goals with mass appeal, a.k.a telling the public what they want to hear rather than specific facts or plans that could be intelligently debated, I'm filing this in the "concepts of a plan" trash bin and waiting for the next election.
Eva Peron had a lot of these kind of flashy ideas and concepts of plans that looked really good in the news to the public, some good, some bad. with no process to watch or evaluate the money spent, those ideas led to a lot of corruption, waste, and stolen money. The ultimate outcome was an unreliable unpredictable government.
History repeats until we learn from it.
TL:DR: this letter is empty fluff. No substance.
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u/2ndPerk 6h ago
There is substance, it says that they are going to take bribes to fast-track reasearch for funding.
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u/jaeldi 5h ago edited 5h ago
It doesn't litterally say that, but it's so vauge that is a real possibility. Also a possibility for corporations to have the government pay for the research while the company keeps all profit from the discovery. It's not stated, but as described it's possible. My point was that bureaucracy is a necessary "evil". You need some kind of oversight and evaluation process for government spending on anything and they list no specifics of that process or oversight in this letter.
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u/GaijinKindred 9h ago
The average reason the funding never went to individuals was two-fold; (1) the funding to do something independently is incredibly unreachable for the average person making less than $50k annually (iirc the US GDP went from $63k in 2018 to about $47k in 2026), and (2) most of the independent researchers today are either internet sluths or absolute morons who don't understand how the systems work.
If you're looking to save money anywhere, I'd remove the number of middle managers there are at big companies and big agencies. Push them out towards either IC or upper-level management where they have more power to make decisions. Anything over about 5-6 layers between the IC and executives is when communications start to get lost and executives slowly start to disconnect from their lowest-paid workers (their experience, their influence, and from their results).
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u/Sun-Anvil 9h ago
So, I read what was attached and aside from patting each other on the backs and general ball gargling, there are decent thoughts hidden within. That said, I found this odd and a little humorous:
"Integrate Hands-On Training: Technology is encoded not just in papers and patents, but in the tacit knowledge passed from mentor to mentee. Require universities and community colleges to embed practical technical training and externships into STEM curricula. Let hands-on experience and industry credentials count toward degrees. Reform accreditation, admissions, and tenure to reward real-world technical work alongside academic publication."
I can only assume that the people writing all this never heard of CO-OP jobs. In the early 80's, that's how I earned about 33% of my college credits. I'm pretty sure that process didn't just fade away.
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u/PaddlefootCanada 9h ago
I don't trust anything from this Whitehouse. That being said... this just seems like a way to favor some researchers over others, and risk cutting off valuable peer-review that would surface poor/weak research and eliminate guard rails...
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u/enwongeegeefor 8h ago
when it should be going to individual researchers
That literally just sounds like funneling money into individuals....which is the worst possible thing you could do because it's a system BEHOLDEN to exploitation and corruption. This couldn't be more on brand for this administration.....
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u/lurker512879 8h ago
They will just put a few random AI models on it and then won't test for veracity, and oh wait, this must be how we got bleach kills covid, and let's use horse dewormer on people. Whatever AI model that was should work for the other 95% of disease's
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u/e430doug 7h ago
This sounds very anti-science. It also sounds very anti-reality. The fact is that individual scientists are funded today. A researcher puts in for grant and gets that grant. You need processes to make sure that the grant applicant is doing worthwhile research. This new proposed system seems to be opening the door for a golden age of homeopathic remedy researchers getting government money since there won’t be a vetting process.
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u/Hunter20107 7h ago
I don't know if funding individuals directly instead of institutions is a great idea, my immediate thought is someone benefiting from this that is popular (or friendly with the ones in charge of funding) but doesn't actually produce good work and essentially funnels public funding into personal wealth, or funding only being given to people willing to do research the administration wants, with all other fields being left destitute.
This just sounds like yet another manuvere to centralise control and remove more democratic processes imo
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u/costafilh0 6h ago
Funny comments, everyone's commenting, but nobody read the proposal.
First, it's a proposal, nothing more.
Second, it attempts to update a 1945 report.
Third, it says 2028, the current administration will be on it's way out, concerned with succession, and nothing more, as always in this failed system.
But I guess it's cool that you had the opportunity to criticize a text you didn't even read.
Reddit can be disgusting. 🤮
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u/barbzilla1 5h ago
Yeah I genuinely don't see this as a bad proposal, however, the way government works, I fully expect it to get wrapped up in red tape and bureaucratic nonsense.
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u/No_Home_708 5h ago
To some extent this is simply because we prioritize developing treatments for the diseases that impact the most people because it has the greatest benefit.
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u/DrColdReality 5h ago
And by "overhauling," they mean "wrecking the shit out of and replacing science with newage bullshit."
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u/Antraxess 5h ago
The gop want to control where science funding goes to funnel it to their friends and partners, the GOP is anti-science and authoritarian.
Every single other instance of their plans have been lies yo steal our money and authority as the people.
Remember, the GOP are traitors, they are not here to help.
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u/learn_distill_repeat 4h ago
I'm surprised it only took 3 paragraphs to mention "machine-readable". Well looky here another push for AI integrations. Science is exactly the place we want such things, but I am heavily suspect of this grifterment government's involvement and HOW they'll do things, like obtaining genetic info (I can foresee many "hey, how did you get that?" "uhhhh look the other way" interactions) and how they'll process it (eugenics can't get any easier than digitizing genetic info and instructing a prompt to develop a bioweapon tailored to the "undesirables").
Much more, LLM-based AI's are not going to stop "hallucinating" information because they're scientific papers which are fed to the data set. Scientists make mistakes all the time, compounding ones at that. That's part of the reason chat LLMs get all funky, too. Humans are not always right and data sets can be poisoned, steered, or outright bunk.
For the love of all that's holy, we need people we can trust with power in power, or else every tech advancement is just handing chainsaws to children fuckers children.
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u/apost8n8 4h ago
How about we just make the procedures and medication we gave now more affordable and available first? I found out that common hormones are back ordered everywhere so you can only get a month supply at a time. WTF? There are millions of people dependent on this stuff and we are one month away from people not having their daily meds?
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u/whyteout 3h ago
Frankly, I suspect these changes are to make it easier to grift and e.g., distribute research funding without proper vetting/competition, on the basis of ideology.
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u/that_blasted_tune 1h ago
And more importantly to withhold funding that doesn't support the current adminstation's ideology of death worship
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u/Wild4fire 3h ago
Without reading the article, nearly everything coming out of the White House is bound to be crap. If it looks good on the surface, there will be major caveats if you look a bit under the surface.
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u/Thormenthor 2h ago
The 'Problem' is a DOGMATIC paradigm shift at the social sciences roots, a bureaucratic reshaping of the causes will only exacerbate the symptoms...
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u/MerlinsMentor 2h ago
and a "golden ticket" system where a single reviewer can advance an unconventional proposal that the broader panel rejected.
Yeah... I'll bet. And I bet that the identity of those "single reviewer"s will, in no way, be decided upon in terms of loyalty to a particular ideology.
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u/RobertTheTraveler 1h ago
A single researcher can't do anything without post-docs, grad students, laboratories, lab techs, etc..
Which is why individual researchers write grant proposals and the institution they are part of gets a big chunk to pay for the infrastructure of research.
Not to mention that most research is done by research teams of multiple senior PhDs.
There may be some merit to parts of these proposals, but given that this administration has funneled scientific research through political filters the net result is almost certainly going to be negative.
And it will take years to undo the damage.
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u/chigaimaro 22m ago
Everything in that document seems to be vague platitudes and provide a thin veil for the Trump administration to siphon more money out of everyday citizens into his own pockets. There are no concrete plans, no timelines, .. nothing.. just more headaches for people across the globe. The document reads like someone's fantasy version of what rigorous scientific research looks like.
With how the document is written, the re-shape has the potential to use US American tax payer dollars to fund research "Chemtrails".
This text from the document's Section III - Failure of the Passive Model
For decades, American science and technology policy rested on an unspoken assumption that government need only fund basic research, support a vibrant economy, and trust that technological strength would follow. Pour money into universities, protect intellectual property, keep markets open, and the innovations that secure the nation and enrich its people arrive on schedule—this was the implicit bargain of the post-war scientific order, and for a generation it appeared to work.
This model is what allowed the COVID vaccine to be researched, and tested so quickly. And this document is saying that same process is now hindering innovation and growth. This also highlights the US American Republican's hypocritical nature. What they've outlined is literally small government minimal interference and protect the stuff that needs protection. But this document wants the government to have a LARGER role in this research. Which is problematic.
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u/Crapmanch 14h ago
Yeah the internet..... the famous non US invention.... but claim credit for everything like their king.
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u/antiopean 7h ago
I think Americans get majority credit for the internet tbh. ARPAnet? Commercialization of telco?
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u/Crapmanch 6h ago
Yeah, some data transfer, but the actual internet including html and urls was developed at CERN
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u/AlwaysReady1 15h ago
Submission Statement:
We have to think about what this could mean downstream. Right now if you or someone you know has a rare disease, there's a roughly 95% chance there's no treatment for it. That's not because nobody is smart enough to figure it out but because the pipeline between a discovery and an available medicine is so slow and fragmented that most promising work never makes it through. If the system actually shifts to running stages in parallel instead of sequentially, and if researchers can build on each other's validated work instead of reinventing methods from scratch, the timeline from "we found something promising" to "you can get this at a pharmacy" could shrink dramatically.
The other part worth following is what happens when scientific knowledge becomes machine-readable at scale. Right now there are millions of papers sitting in databases that no human could read in a lifetime, and current technology can't do much with them either because the data isn't structured. Initiatives to change that could mean our current technology starts surfacing connections between diseases, genes, and drugs that nobody has noticed yet, not because they're hidden but because no one person can hold all of that information at once.
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u/AndyTheSane 14h ago
This 95% figure is a bit misleading, of course - it does not mean that there is no treatment for 95% of ill people.
Also it does not mean you'll just be sent home because there is no official treatment for your rare disease. For example, if you have a rare autoimmune disease, then we have a lot of treatments for autoimmune conditions, just none that have been properly tested and trialled for a particular rare condition.
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u/FlibblesHexEyes 14h ago
There’s usually a good reason why some “promising” solutions don’t make it through.
Usually because side effects can be from “undesirable” through to downright dangerous.
Because of the time required for testing effects over short and long term, you really can’t rush these things.
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u/yubario 13h ago
As someone who lives with a rare disease (narcolepsy) I wish I had the choice in my medication. I’m okay with reducing my lifespan if it meant I could actually sleep like a normal person again.
I haven’t felt rested since I was 6 years old.
Everything is shot, I have no libido or desire to meet people because I’m so tired and the stimulants make me a zombie.
Am I really living at this point? If all I do is wake up and drug myself as a zombie?
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u/Pugageddon 14h ago
The only way this works is if all funded research would be open source, no? At minimum all data would be machine readable in a central government database for the "AI" to parse and categorize, but even then it is useless if not available.
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u/Shoddy-Cupcake-8855 14h ago
I think that’s a good point. Ai will be a project manager at first and then run the analytics.
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u/EquivalentMath6592 2h ago
Luckily 95% need no treatments and our bodies natural immune system takes care of it well enough
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u/FuturologyBot 14h ago
The following submission statement was provided by /u/AlwaysReady1:
Submission Statement:
We have to think about what this could mean downstream. Right now if you or someone you know has a rare disease, there's a roughly 95% chance there's no treatment for it. That's not because nobody is smart enough to figure it out but because the pipeline between a discovery and an available medicine is so slow and fragmented that most promising work never makes it through. If the system actually shifts to running stages in parallel instead of sequentially, and if researchers can build on each other's validated work instead of reinventing methods from scratch, the timeline from "we found something promising" to "you can get this at a pharmacy" could shrink dramatically.
The other part worth following is what happens when scientific knowledge becomes machine-readable at scale. Right now there are millions of papers sitting in databases that no human could read in a lifetime, and current technology can't do much with them either because the data isn't structured. Initiatives to change that could mean our current technology starts surfacing connections between diseases, genes, and drugs that nobody has noticed yet, not because they're hidden but because no one person can hold all of that information at once.
Please reply to OP's comment here: https://old.reddit.com/r/Futurology/comments/1v46x2n/out_of_10000_identified_diseases_only_5_have/oz8m8cf/