Hacker News new | past | comments | ask | show | jobs | submit login

> I think if this worked as intended, no additional treatment is required.

It is correct if the therapy is targeting all stem cells. I have not understood clearly from the article but it seems the treatement is targeting "living cells". Once all your 'fixed' cells have been renewed you would need another round of treatement.




I have Haemophilia A, I was actually offered a place on an earlier trial although I didn't do it. It was explained to me that you would not need further gene treatments even though it targeted adult cells.

I think most cells are made by mitosis and don't come from stem cells.

Here's a screenshot of the explanation I received when I was invited on the trial -https://i.imgur.com/H329Vgv.jpg

> "By using BMN 270 to provide the functional genes, it is expected that you may not require treatment for Haemophilia A, as often or at all."

I don't really want to upload the whole Participant Information Sheet because it contains some of the doctor's personal details.


My son also has hemophilia A and I'm fascinated by the possibility that he may someday join one of these trials.

The increase in the pipeline of gene therapies just in the past few months has been incredible.

Here are the ones I'm tracking: BioMarin valoctocogene roxaparvovec (BMN-270) Spark SPK-8011 Sangamo (Pfizer) SB-525 Bioverativ BIVV-001 Shire SHP-654 (BAX-888)


Thanks for sharing! Can I ask what considerations went into your decision? Will you be pursuing this now that there is more evidence that it's effective?


I mean, obviously I regret it now, but at the time I had no idea it would work. I'm sure the next trial will be extremely oversubscribed! I think my trial was actually for a low dose version to test safety of the vector and it didn't have any clinical effects.

Its quite incredible though, there's only a few thousand people in the UK with haemophilia - this trial just cured like 0.5% of them


Yea, I definitely was not suggesting it was a mistake with the info you had. Most clinical trials don't work.

Thanks again for the info. Best of luck!


Would you mind keeping us updated if you pursue the next clinical trial? Happy to kick in Patreon money for your time. (Not a wierdo, just deeply interested in Curing All The Things).


What wonderful news for you. I understand your caution. Now your whole life will be changed. Some people are so brave.


Thanks for clarifying my misconceptions !


Surprising to me:

> As for the liver, the human body's detoxifier, its cells' lives are quite short - an adult human liver cell has a turnover time of 300 to 500 days.

https://www.timeshighereducation.com/news/life-span-of-human...

So I think it must be targeting the stem cells or this wouldn't last more than a year or two? EDIT: See Chriky's comment.


well, stem cells are special in that they form tree replication structures to avoid problems like the Hayflick limit, so if the ones high up in the tree got repaired, you should have new stem cells born that inherit the fix for decades. At least, that's my understanding of the theory; that's no guarantee it works that way in reality.




Consider applying for YC's Fall 2025 batch! Applications are open till Aug 4

Guidelines | FAQ | Lists | API | Security | Legal | Apply to YC | Contact

Search: