this post was submitted on 27 Sep 2025
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Until now there has been no treatment. But on Wednesday researchers reported how a new gene therapy had managed to slow progress of the disease by 75%.

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[–] SaveTheTuaHawk@lemmy.ca 17 points 1 day ago (3 children)

Well, it will not. It will cost >US$3M, and few countries could even handle the number of surgeries required.

Shame on the BBC and their unbridled hype on this. You will need to win the lottery ten times over to pay for this.

But this is a SINGLE UNCONTROLLED trial and not approved. Once again, HD families are being hyped on a therapy will little public release of data. This is not the first time a "cure" goes practically nowhere for this disease. And again, the same two British researchers in front of this hyping as they did in the past. This is extremely unprofessional and irresponsible.

People got very rich off QURE stock this week.

The concept is promising. There was a much cheaper oral drug that showed similar efficacy in phase two trials this summer and the media ignored it. Lazy journalism or a clear agenda, not sure what is going on. There is a real drug further along the approval pipeline that will not be just for billionaires. Somehow the BBC doesn't know this.

[–] CandleTiger@programming.dev 5 points 1 day ago (1 children)

There was a much cheaper oral drug that showed similar efficacy in phase two trials this summer and the media ignored it.

Which drug is that? You’re not kidding about “media ignored it” I tried searching and found nothing.

[–] atro_city@fedia.io 4 points 13 hours ago

@SaveTheTuaHawk@lemmy.ca I'm curious too. Please don't tell me AI told you about an oral drug...

[–] auraithx@lemmy.dbzer0.com 4 points 1 day ago

Might be covered by the NHS. They pay similar prices for other gene therapies.

[–] FerretyFever0@fedia.io 5 points 1 day ago

Treatments get cheaper over time. Typically, at least.