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Huntington's disease treated for first time

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Re: Huntington's disease treated for first time

#121

Post by southernplaces7 »

singulasar wrote: post #45
siva7 wrote: post #21

Medical progress has been insane in the last few years through technological breakthroughs. It's not out of reach to think that most types of cancers will be curable 20 years from now on.

Let's hope the defunding of medical research can stop so this can become true

The funny thing about phrases like that is that they often get repeated despite being devoid of factual content.

We should indeed keep an eye out for the defunding of medical research but as even a few quick numbers from the NIH (at least speaking for the US) show, it hasn't generally been getting less funding year over year right up to the latest numbers. All the opposite actually. Increases in funding have shrunk slightly, but that's not the same as defunding.

Similar stats apply almost globally in any relevant public funding context. After all, if there's one thing that everyone wants, from rich to poor, powerful or weak, it's to hedge against bad health and a shorter lifespan by whatever means available, and especially if those means involve throwing money that isn't even yours personally at something with publicity.. Even the most selfish politicians can usually get that through the fog of their self-interest.

https://report.nih.gov/funding/categorical-spending#/

Re: Huntington's disease treated for first time

#122

Post by slfnflctd »

philipallstar wrote: post #119
jmcgough wrote: post #20

Earlier quoted context omitted.

> 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 frien…

> 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.

This take seems a tad myopic to me.

We are rapidly and increasingly falling behind at least two other nations in terms of science and health breakthroughs.

The things that make the US seem like the worst place in the world are mostly a result of political gridlock, which is advantageous (in the short term) for a small group of people who thrive under the status quo, who do everything possible with their outsized power to manipulate the electorate to keep it that way, out of cowardice.

The US voter in general has been horribly misinformed, misled and manipulated into supporting things that are both against their own personal interest and against the greater good for the country as a whole.

I don't know how to fix this, but I personally don't think making grand proclamations about how great we are/were while pointing blame fingers around to obfuscate the more obvious reasons for the average citizen's discontent is a smart or ethical way to approach the situation.

Re: Huntington's disease treated for first time

#123

Post by ausbah »

edm0nd wrote: post #80
ourmandave wrote: post #77

Has anybody thought about changing the name from Huntington's disease to after the lead person or team that found the cure?

Is that a thing that happens in the medical field? Are we going to rename Polio to The Bill & Melinda Gates Foundation?

if it got more billionaires to donate all their wealth toward humanitarian and scientific causes i’d let than rename pretty much anything

Re: Huntington's disease treated for first time

#124

Post by philipallstar »

slfnflctd wrote: post #122
philipallstar wrote: post #119

Earlier quoted context omitted.

> 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.

This take seems a tad myopic to me. We are rapidly and increasingly falling behind at least two other nations in terms of science and health breakthroughs. The things that make the US seem like the worst place in the world are mostly a result of political gridlock, which is advantageous (in the short term) for a small group of people who thrive under the status quo, who do everything possible with their outsized powe…

> We are rapidly and increasingly falling behind at least two other nations in terms of science and health breakthroughs.

Perhaps you are, but I'm not convinced. What's the metric?

> The things that make the US seem like the worst place in the world are mostly a result of political gridlock, which is advantageous (in the short term) for a small group of people who thrive under the status quo, who do everything possible with their outsized power to manipulate the electorate to keep it that way, out of cowardice.

The political lines are clear. You can see endless interviews with kids on college campuses who've been indoctrinated to believe the silliest things. That America is the worst, most racist and sexist place in the whole world.

> The US voter in general has been horribly misinformed, misled and manipulated into supporting things that are both against their own personal interest and against the greater good for the country as a whole.

This seems a tad myopic itself. While I agree people are being misled, I would count both you and I as "people" in that regard, and equally not knowing what's best for everyone. If we did, we could just be the only two voters and it would all be perfect.

> I don't know how to fix this, but I personally don't think making grand proclamations about how great we are/were while pointing blame fingers around to obfuscate the more obvious reasons for the average citizen's discontent is a smart or ethical way to approach the situation.

No idea what this means, as there were no grand proclamations previously mentioned.

I think part of the problem is America can do huge numbers of things right, and carry quite a lot of the advances that help the whole world on its taxpayers' backs, but still be mostly criticised and teased as a country from the citizens of other, generally older, now less high achieving countries. Who only acknowledge those massive, ground-breaking contributions when they are withdrawn and can be used to complain about the USA.

Re: Huntington's disease treated for first time

#125

Post by kulahan »

kens wrote: post #97
kulahan wrote: post #64

Earlier quoted context omitted.

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.

> As an aside because I'm pedantic about the language, apostrophes are never used to show pluralism. Mind your p's and q's. Source: Chicago Manual of Style, 14th edition, section 6.82. Also see section 6.77: Tim had had enough of her "maybe's."

I am unironically stunned

Re: Huntington's disease treated for first time

#126

Post by [deleted] »

chneu wrote: post #103
presidentender wrote: post #82

One of my mom's best friends when I was a kid had Huntington's. She was a few years older than mom, and her sons were a few years older than my brother and I. One of them chose to get tested. The other chose not to. I remember thinking that was foolish, but I was seven years old. In retrospect, it's strange that a seven-year-old was privy to such things.

I completely understand why someone wouldn't want to get tested. There are several episodes of House M.D. that deal with this. Hadleys, one of the doctors, mom had Huntingtons and house hounds her to get tested. She doesn't want to get tested. Really great set of episodes. I can completely understand how knowing/not knowing would change how you approach life.

[deleted]

Re: Huntington's disease treated for first time

#127

Post by trallnag »

jawns wrote: post #117
trallnag wrote: post #52

"If one of your parents has Huntington's disease, there's a 50% chance that you will inherit the altered gene and will eventually develop Huntington's too." Have they never heard of genetic diagnostics? For example with a combination of preimplantation generic testing and in-vitro fertilization you can prevent passing on known genetic mutations to the next generation.

There is an ethical component here. The process you describe involves bringing new human lives into existence, then culling the embryos that carry the gene. For those of us who believe that directly ending human lives at any stage is wrong, this is problematic. Keep in mind that this isn't a so-called "incompatible with life" genetic issue. People with the defective gene can live asymptomatically into middle age. I'v…

I'd say that as long as we allow abortions for personal reasons weeks into a pregnancy and sometimes describe even fetuses as bundles of cells, it's fine to kill blastocystes consisting out of a few hundred cells as they are evaluated for IVF

Re: Huntington's disease treated for first time

#128

Post by lostlogin »

Shortness8 wrote: post #75
lostlogin wrote: post #72

> In the UK, the NHS does pay for a £2.6m-per-patient gene therapy for haemophilia B. A misleading data point. This group of people were treated so poorly by the state that something had to be done. I don’t think this is setting a benchmark. https://haemophilia.org.uk/public-inquiry/the-infected-blood...

Don't often comment on HN but have to point this out as a med student in the UK: the cost-benefit roughly works out for those in favour of giving the therapy when the alternative is a lifetime of coming to hospital 3 times a week for Factor IX infusions, and the additional cost of stays in hospital for bleeds/haemarthroses and the complications thereof. Of course, this also ignores the human cost, particularly the ex…

I don’t dispute the value in treating these people. The group has been treated terribly in the recent past.

I’m in NZ an our system is closely related to the NHS. The funding is where politics comes in and that’s not usually happening at a clinical level, it’s deeply political.

Re: Huntington's disease treated for first time

#129

Post by rammanrashida »

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Re: Huntington's disease treated for first time

#130

Post by pas »

meindnoch wrote: post #91
w10-1 wrote: post #69

(non-expert) This is promising but needs publication and expert review. Here's the actual company statement from today: https://uniqure.gcs-web.com/news-releases/news-release-details/uniqure-announces-positive-topline-results-pivotal-phase-iii There's also a June 2024 article: https://www.cgtlive.com/view/huntington-disease-gene-therapy-nets-rmat-designation That explains a bit more: (1) neuro-surgery introduces gene…

>Remember, there's no reversal agent or half-life elimination for such genetic treatments. Another virus that removes/breaks the inserted gene?

if I understand correctly it only injects a "gene cassette" which forms an episome (a plasmid-like thing, ie. just a ring of DNA outside the nucleus, just floating around in the cell), so it's non-integrating

https://youtu.be/q8HIubDJiMI?t=41

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