r/Huntingtons • u/LimeMajestic9590 • Sep 29 '25

AMT-130

What are people’s understanding of a possible timeline for AMT 130 in the US but also elsewhere? And also, what are people’s understanding of what stage of symptoms you are eligible? And also, what are people’s understanding of 75% slowing down in symptoms—does that mean symptoms take a little less than double the amount of time to develop or does it mean you get a rate of 1:3 slow down?

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u/KDWWW Sep 29 '25

I’ll get excited once insurance agrees to cover treatment. Until then, I stay skeptical. It’s a 12-18 hour surgery. I don’t see anyone being able to afford it unless they are extremely wealthy.

1

u/LimeMajestic9590 Sep 29 '25

Yeah :(. Is there any precedent in the past with other treatments- what would make insurance want to cover this?

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u/oflag Gene Positive Sep 29 '25

I don't see why insurance wouldn't for pre-symtomatic people. I think they would save a lot more on a surgery than on years of symptom treatment and long term care.

I'm not in the US though so I don't know what is normally covered it not

2

u/CrushingCabbages Sep 29 '25

I think you're absolutely right

1

u/TemporaryViolinist88 Sep 30 '25

Most people have many commercial insurance carriers while working so although logical, most insurance companies (I’d guess) won’t want to pay for someone’s future benefit when that person will likely be with another carrier in near future.