Huntington's Disease - hope at last?

[SpidersAreShitheads]

The BBC is currently leading with this story:

https://www.bbc.co.uk/news/articles/cevz13xkxpro

For anyone not familiar with it, Huntington's is a bastard of a disease. My dad died from it, and I have a 50% chance of developing it. I've not been tested for the gene as until now, there wasn't really any point as there were no effective treatments.

So this is huge, wonderful news for anyone who's affected by this disease or has the shadow of it hanging over them. The focus is on making this treatment available in the US in the first quarter of 2026, with discussions with the UK to come after.

But - and you probably know what I'm going to say - cost.

It's pioneering neurosurgery that takes around 12-18 hours. The BBC don't give an idea of the cost but they say it's expensive and won't be available for everyone. The BBC does go on to give an example of a treatment the NHS funds that costs £2.6 million per patient.

I'm nearly 50 and fingers crossed, I haven't developed any symptoms yet so hopefully I might not ever need it. I'm not out of the woods yet though. But to know there's a treatment with what looks like an amazing success rate that's available but not affordable, it would be absolutely soul-destroying to anyone who needs it.

I'm probably too close to the subject to think objectively but I would say the same for any other condition where there's treatment that has such a strong outcome. Especially when you then need to balance up the initial outlay against the cost of ongoing care if treatment wasn't given.

I haven't added a poll as I think it's too nuanced but I'd like to think that treatments like this weren't restricted to only those who could afford it privately. I have no idea how the NHS would be able to afford it though.

I'm so, so delighted to hear this.
I have a personal connection with the research team at UCL and they deserve every accolade.

It is a fabulous news. This is a treatment that is only needed once in a lifetime so it might well be worthwhile for the NHS to pay and reduce the costly care needed by Huntingdons patients. But I imagine that will take a few years to filter through the nhs systems to the people who need it.

and a key future innovation will be finding cheaper easier ways to get the new drug to the right bit of the brain. It is the complex and high risk brain surgery to deliver the drug that makes this so expensive.

these things will all take time to happen, but it does give hope for families. So good news.

This is what NHS money should be spent on, rather than the billions spent on managing lifestyle diseases

I would have thought, even if it is very very expensive, that the benefit will be less hospital admission and social care needing to be spent therefore a benefit in the long run at the population level.

Certainly seems to be if they pay over 2 million for haemophilia patients. They wouldn’t do it if it wasn’t cost effective.

I wish you all the best - you may want to think about getting tested now if this will take some time to sort out.

I have just seen it on the news it sounds very promising
Its such a horrible disease.

💐❤️ @SpidersAreShitheads

Very hopeful news, it's so awful that something that can save a life has a price on it.

I remember learning about Huntingtons as a teenager and thinking what a horrible disease it is. I was so pleased to see this news today. I hope that it can become available to all those it would benefit. I know the NHS has to make difficult decisions relating to funding but like others think there's offsets related to the cost of care and adaptions if someone isn't treated. As well as obviously the horrendous mental, physical and emotional costs to those unlucky enough to be affected. Hopefully though the NHS can maybe make a deal and get it cheaper. I wish you and your family well OP.

It’s great news but I’m always reluctant to get my hopes up too much, as the last breakthrough turned out pretty disappointing. As for the cost, my Dads specialist care has probably cost about the same by now, 12 years in a specialist home. It makes me feel much more optimistic for my son.

Op I'm glad they are finding a cure for this horrible horrible disease. Its fantastic news ❤️

I cried when I saw this earlier. Such wonderful, hopeful news. Sending love to everyone affected by this awful disease.

Amazing news. Neuroscience is incredible.

Those brave participants have paved the way for their children and grandchildren to live normal lives. I hope they're celebrating!

It’s a great night for positive science progress today. I also heard the announcement of a breakthrough HIV treatment that is going to be made cheaply available to lower income countries
It made me think that there is some good in the world.

It is fantastic news. I've known (professionally) families affected and I am so much hoping that the treatment is rolled out. It's a hideous condition, every penny spent from taxes will be worth it and I think anyone who has seen its effects would want that.

ETA I hope the team from UCL get the Nobel Prize for Medicine.

I would also have thought that the investment and experience of this procedure for Huntingtons could in time bring about other advances for other diseases in the future.

I don’t have any personal connection with Huntington’s, but we have a different genetic illness in our family, and as soon as I saw this headline I thought what amazing news.

That there is some hope, even if for the future as opposed to right now. For the people just waiting for symptoms to appear, for the children of people who didn’t know they had the gene when they conceived. The psychological impact of the disease on families is horrific
The existence of a treatment at all is step one towards accessible treatment being developed. To think that my children might have a treatment even if I didn’t is huge.
Such a good news story.

Oh that’s such good news. Huntingtons is such a cruel disease.

So pleased to see this. My ex died of Huntington’s in his early 30s having watched his mother die only a decade earlier. Absolutely awful disease.

I wish you the very best OP

It’s amazing news. Very hopeful for the future.

A neighbour died of this when I was a teenager. It was awful.

It is just so nice to have some good news at the moment.

I have the disease. It’s absolutely ravaged my family and continues to do so, so today’s news is absolutely amazing. I am allowing myself up feel tentatively hopeful for the future.

My df and dsis died from this.

It destroyed by dm.

This is great news.

Thanks so much for posting this as I wasn’t aware. Huntingtons has ravaged my partners family and consumes our lives as carers albeit part time. This gives me hope for my partner who is 49 and although showing no symptoms, is untested and lives with the fear of developing the disease. My best wishes to all affected by this dreadful disease.

This News took my breath away when I heard it on the radio earlier: absolutely incredible! Scientists are so clever; treatments get better and better over time too. The future is bright.

This horrible disease has affected members of my family, this is amazing news, I feel so much hopeful for the future , especially my adult children, who are particularly worried about it.

It's brilliant news. Yes very expensive now, but any new treatment may have the way for cheaper costs in future.