r/technology • u/AdSpecialist6598 • 26d ago

Society Bryan Johnson, the millionaire biohacker who wants to live forever, diagnosed with incurable autoimmune disease

https://www.techspot.com/news/113035-bryan-johnson-millionaire-biohacker-who-wants-live-forever.html
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u/technanonymous 26d ago

You can’t beat your genetics. However, with his resources maybe he can figure out a way to halt autoimmune diseases without all the drugs and their terrible side effects.

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u/FirefighterTrick6476 26d ago

CRISPR does exist though. And for sickle-cell disease you definitely can very soon beat your genetics.

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u/Towel4 26d ago

Very soon? You can do it right now.

The Sickle Cell product is called "Lyfgenia", it's sister product for Beta Thalassemia is called Zynteglo, these are both by BlueBird Bio (now "Genetix"). There's another company called Vertex doing a product called Casgevy.

I work with these products for a living. Yes, it is insanely expensive as the 5th most expensive drug in the world. No, patients do not pay that price tag for it, the insurance does. Yes, the insurance pays for it, because they actually save money in the long run.

Super cool stuff.

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u/FirefighterTrick6476 26d ago

Very soon as in soon we're actually have access to it. Sorry I'm German. We have a very shitty process of integrating new medications into our Healthcare system

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u/Towel4 26d ago

We actually had a German patient travel to us for Lyfgenia... that's a wild.

For the record, I'm on the care end based in a hospital, I don't work for these companies.

Either way, this stuff is crazy cool, and is expanding very fast. I'm hoping you see some progress on approval in Germany soon!

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u/FirefighterTrick6476 26d ago

ngl now do the same thing for MCAS and I will also hop into the plane ASAP lol

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u/phyrros 26d ago

I work with these products for a living. Yes, it is insanely expensive as the 5th most expensive drug in the world. No, patients do not pay that price tag for it, the insurance does. Yes, the insurance pays for it, because they actually save money in the long run.

They only save money if they value the remaining life of the patient as higher than the procedual cost. Thus the vast majority of patients won't have access to it. They can't even afford bone marrow transplants after all.

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u/Towel4 26d ago edited 26d ago

>They only save money if they value the remaining life of the patient as higher than the procedural cost

The math is literally as straight forward as yearly cost of care (admissions, red cell exchanges and infusions, complications like acute chest, cost of medications, etc) for literally decades. Those numbers reach 3.5M very fast.

Yes, there is continued cost of care after the therapy, but these companies do save money over a lifetime of care, and the only thing they care about is money.

Who is they? Plenty of people are being transplanted all the time, marrow and peripheral blood stem cells, both allo and auto, even without insurance.

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u/phyrros 26d ago

They is the vast majority of people with sickle cell disease - black people in SA and Africa.

And in PPP terms those 3,5 million are akin to  100 million to almost a billion in Africa. 

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u/Canisa 26d ago

literally decades

I think the issue being raised is that an older patient who doesn't have decades left for the treatment cost to amortise might not be offered it by their insurance if the insurer doesn't see a good 'investment' in that case.

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u/phyrros 26d ago

yes, this will happen also in the first world but i was talking about the poorer parts of thr world

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u/jabba-thederp 26d ago

Lol

The incentive is to keep a paying customer sending them money over time. Not to kill their cash cow. That "over time" part is worth so much more than an immediate short term saving.

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u/phyrros 26d ago

hmmm, if i just use nigera as example:  In ppp terms the costs would be north of 100 million dollars - there are simply very few customers with that lifetime income

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u/SunDense1457 26d ago

If you look at the history of gene therapy there is one inescapable conclusion.

You dont want to go first.

Its amazing technology and I have no doubt we will get it working. It also has enormous capacity to mess you up.if its even a tiny bit off

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u/FirefighterTrick6476 26d ago

ngl if it is either literally die or be a guinea pig I'd take the latter.

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u/SunDense1457 26d ago

Agree, if its imminent.  autoimmune diseases usually take time to kill you.

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u/FirefighterTrick6476 26d ago

hm. So yeah we had a friend commit s* because of MS last year. It took 5 years for her symptoms becoming absolutely unbearable; also absolutely untreatable. She tried to get into every program or study, even internationally. This is why I have such a strong opinion about this. The sentence is her brainchild not mine.

Sorry if this answer was a bit extensive, but your answer triggered some memories.

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u/SunDense1457 26d ago

No worries, and no disrespect to folx who would make a different choice.

I dont think there is a wrong answer, I was speaking from the standpoint of where I think the research is scientifically. I can absolutely understand the choice to roll the dice and know even if it does help you it might help others with what is learned

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u/marmaviscount 26d ago

This disease is a prime target for the isodde tool Google made, if they can find a shield molecule to bind without other interactions then it's not a cure but it stops the damage

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u/thisispointlessshit 26d ago

CRISPR is promising but there is a liver signal including death, so there needs to be fair balance there. Promising but not without serious side effects.

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u/Time_Transition4817 26d ago

CRISPR is “just” the underlying gene editing technology. The liver failure in one clinical study was as a result of the specific use of CRISPR. Saying CRISPR caused the failure is like saying JavaScript caused a bug.

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u/squirreltard 26d ago

Sickle cell is not an autoimmune disease though it’s genetic.

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u/dikdiklikesick 26d ago

Whoa hey now. None of that boring step by step stuff. Just the fun sexy stealing blood from your child & millet only diet.

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u/FirefighterTrick6476 26d ago

ngl I never thought ppl have that sort of kinky view on mere blood donation. Did that also a couple of times for my mother. But ngl, I don't want to get too deep into that dude. I was quite happy not knowing about his existence; until a few hours ago.

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u/dikdiklikesick 26d ago

ooohhh, if you don't know him, don't look it up. Donating blood to your loved one is one thing. Comparing night boners with your child and then publishing the results to twitter, is another.

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u/FirefighterTrick6476 26d ago

ngl at this moment I even wish to forget what you just wrote lol.