[karmelapple]

What part of this discovery was made thanks to NIH and/or NSF funding from the USA, or the NIHR in the UK?

I don't ask to strictly bring up politics, but instead to try and address the broad lack of understanding of how medical breakthroughs like this are made.

It's not done just by drug companies. The article says:

> UniQure says it will apply for a licence in the US in the first quarter of 2026 with the aim of launching the drug later that year.

That's true, but that doesn't talk about the tens to hundreds of research papers that have been published over likely decades to make this discovery a reality. And it doesn't talk about how much public money went into this discovery.

Many people reading this article probably have a vague idea that more than just this company was involved, but I feel it is not at all clear to the vast majority of people, since the vast majority of people are not involved in biomedical research.

I wish there was an easy way to figure out how many dollars, how many grants, how many researchers, went into achieving this breakthrough. And that the media would put that into news articles like this. Trace all the citations back a few orders, and I bet you'll find a massive number of NIH and NIHR grants.

There is unfortunately not more massive, bipartisan public outcry in the US over defunding the essential basic research the NIH does... and it's not new to the current administration, since it was attempted to be done back in 2017, too [1].

Scientists need better messaging or else we're going to stop having breakthroughs like this... and the breakthroughs are already going to slow down thanks to things like the $783 million in cuts to NIH grants that the US SCOTUS authorized in August [2].

1. https://pmc.ncbi.nlm.nih.gov/articles/PMC5468112/

2. https://www.scotusblog.com/2025/08/supreme-court-allows-trum...

[stevenwoo]

The problem is the soundbite of some of these studies on the surface is ridiculous to lay people but even good studies with bad sound bites are used as weapons against science funding in the USA. The shrimp on a treadmill study is still used as argument against science funding today. https://www.npr.org/2011/08/23/139852035/shrimp-on-a-treadmi...

[privatelypublic]

I always thought the shrimp was a random meme. This is even better!

My understanding is There's also studies of "duh!" Things, so theres a paper to cite instead of an assumption.

[jmcgough]

> Scientists need better messaging or else we're going to stop having breakthroughs like this

Sure, but it's really sad that scientists need to justify their funding to the public - they already spend so much time justifying it to the NIH and others for funding.

So many people have had their careers jeopardized by finding pulled mid-project. I am really concerned about our research pipeline, because my post-doc friends are all applying to jobs outside the US now.

[mattkrause]

This is where the funders really ought to step up.

A spokesperson from (say) NINDS really ought to be shouting to anyone who will listen about how excited they are to see their <many year>, <many dollar> investment in Huntington's pay off.

I'd love it if they highlighted some of the especially "weird" studies that went into this to demonstrate how important fundamental research is and how it goes in unexpected directions.

[philipallstar]

> it's really sad that scientists need to justify their funding to the public

The (mostly American) public pays their salaries; it's not that odd. The public elect the government (mostly the US government) that distributes the funds. The US voter in general has just got tired of living in the "worst place in the world" while also funding the majority of the world's science and health breakthroughs, I think.

[melagonster]

We even do not need to calculate NIH grants; I am pretty sure that all databases that were used here are from NCBI. If there were no NIH, all research would be impossible in modern biology.

[oulipo2]

I'm pretty sure some of it is direct funding by governmental agencies, but even if that wasn't the case, all the basis of the theory, and the groundwork was laid by researchers and universities using those grants. You need public money for a healthy society

[caycep]

I think it is a UK study. It actually has been going on for a number of years, I've seen one of the PIs giving a number of big conference talks (Tabrizi) for a while

[sleight42]

There's little money to be made with HD. It's a 1 in 30,000 disease. There's been little reason for anyone other than state sponsors to support its treatment. Add this to the reason's to be disgusted by capitalism. Spoken as a widower of an HD wife.

[mnw21cam]

I do research into neonatal diabetes, which is a 1 in 100,000 genetic disease. We're entirely state and charity funded. We have had a grant for many years to do genetic analysis on anyone from around the world who fits the criteria (diabetes under six months age) and who can send in a blood or DNA sample. It's a good model, and now more than 90% of patients with neonatal diabetes get their genetic diagnosis.

[missedthecue]

I'm sorry to hear about the passing of your wife.

How common a disease is doesn't have much to do with treatment efforts. Cystic Fibrosis has practically been cured by Big Pharma and only ~40,000 people in the entire US have it.

[tirant]

I'm sorry for your loss, I can only imagine how difficult it must feel to face a disease with so few treatment options

I just would like to say that it's not capitalism that decides if money is invested in a disease or another but just the individuals operating freely in the market. On the other hand Capitalism has been actually the main driver for the massive investments that enable the expensive research in biomedical topics.

It’s unfortunately normal that conditions with very low prevalence, receive less private investment than diseases that affect millions of people. That’s not because of a moral failing of capitalism, but a result of free market and the free decision of the population on where to allocate their resources. Imposing anything else on people would actually be the real moral failing, because what is the right allocation of resources between technological development, investments about hunger, medical development or just leisure? Let each individual decide for themselves and of course feel free to convince anyone to invest in what you consider priority.

So I think the fairest system is the one where individuals remain free to choose how to invest their time and money, while society as a whole can still decide, for example through philanthropy, to give extra support to areas some areas like rare diseases.

Said that, if you know of any organization supporting HD research that deserves any type of donation please let us know here so we can support it voluntarily.

[kulahan]

It really has nothing to do with capitalism. There are special grants in the US for researching rare diseases, specifically to ensure money isn't the barrier.

As an aside because I'm pedantic about the language, apostrophes are never used to show pluralism.

[amelius]

It's standing on the shoulders of giants, and the one on top gets to reap all the benefits.

[mattkrause]

Even that quote is a bit of a disservice to modern science: it's a massive pyramid made of thousands and thousands of individual contributions, including many bits of deep background and outright "failures".

Biology is tough in that you can't just "reason" your way to success; it often really does require trying something to see if an approach works.