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| A Eugenics Success Story | Login/Join |
Has Achieved Nirvana |
https://doryeshorim.org/ I’m surprised this hasn’t gotten more press.
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Has Achieved Nirvana |
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| "I've got morons on my team." Mitt Romney Minor Deity  |
A somewhat controversial organization, to be sure. As a carrier of one of those Jewish recessive traits, I'm on the side of information and informed choice, even if that seems like eugenics lite. | |||
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| Has Achieved Nirvana |
I’m all for it, as long as it’s voluntary. (Granted, in this community it’s not clear that it’s always voluntary.) But as long as the government isn’t pushing it I'm ok.
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| czarina Has Achieved Nirvana  |
I dont see anything here that shows they have "eradicated" tay sachs. If there are no more tay Sachs cases in existence, it's only because of a practice similar to arranged marriage (which, in some orthodox communities, is defacto). But I am sure the gene--and those who carry it--still exist and the disease can reappear at any time.
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| Has Achieved Nirvana |
Well, the quote is from their website. I would assume they mean they eradicated it from a specific population, probably a specific Hasidic group in NY where marriages can be effectively controlled.
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| czarina Has Achieved Nirvana |
Here's an excellent article about the disease: https://rarediseases.org/rare-...s/tay-sachs-disease/ 16 cases diagnosed a year in the U.S. it appears in many other populations besides Ashkenazim. The adult onset form often goes unrecognized or misdiagnosed. My youngest brother had the adult onset form. I was surprised to learn from reading this article that I have a couple of symptoms myself.
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| Has Achieved Nirvana |
Did your brother die from it? Have you ever considered getting your phenotype checked?
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Minor Deity |
On a related note, my sister recently took a job with a company that is developing truly revolutionary drugs for some terrible genetic diseases. One of their recent drugs will likely, if taken for the rest of their lives, give 40% cystic fibrosis patients a normal quality and length of life. Another such drug that they have in the works will do the same thing for 90+% of cystic fibrosis patients. Another new drug will, I believe, cure sickle cell anemia. I think it's a once-and-done treatment, but that treatment involves a bone marrow transplant so it's not like popping a pill. Nevertheless, both cystic fibrosis and sickle cell anemia involve prolonged suffering and early death for most patients, so these treatments are truly revolutionary. Setting aside what I'm sure are breathtaking costs, I presume that these treatments are going to mean that more people are able to have children and pass on those genes. This is not a small follow-on effect, but I don't have a solution for it short of eugenics and I'm not going there. But perhaps this is a short-term problem, because I'd guess that we're not far from gene-editing technology that would address it.
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| Has Achieved Nirvana |
The company is Vertex and their miracle CF drug (90%+) was just approved in October or November. They also have a promising treatment for my disease (Alpha-1) in Phase 1 clinical trials. That’s a useful reminder, I need to bug my sister to enroll.
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| Has Achieved Nirvana |
Oh yeah, and Trikafta, the new miracle drug, costs around 315k per year.
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| Minor Deity |
Yep, that's the company. Is the 95+% drug is approved but not yet available for sale? It was a wide-ranging conversation and I'm remembering the gist but not the details She says that they have a bell-ringing ceremony when they get a drug approved and bring in someone who has benefited from it during trials. The young man whose cystic fibrosis was vastly improved by one of the drugs--I can't remember if it's this one or the earlier one, but she's only been there since June--brought everybody from the CEO on down to tears. Our conversations are interesting. Her politics are well to the right of mine, although not Trumpian, so we skirt a lot of issues. Mainly, she is just gobsmacked by how many people's lives could be lengthened or immeasurably improved. I'm the one saying, "I don't know how we can pay for it," when I really mean, "I'm not sure we could pay for this in an ideal political environment, and I sure as heck don't know how it would happen at the moment." I do know that it offers a simplisitic bumper-sticker level argument along the lines of, "Would you rather have one new bomber or cure x number of sick people?" but I don't know what that would solve.
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| Has Achieved Nirvana |
It’s approved and is shipping. A friend of mine (transplanted CF patient) posted an ‘unboxing’ photo when she received it. Sounds corny but this is a really really big deal for them. It’s currently only approved for 12+. I think they are going to rapidly test it on kids. They’ll have no issues getting volunteers! And the FDA should be pretty quick about it. They were with the earlier approval.
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| Has Achieved Nirvana |
By the way, I’ve long since made my peace with expensive drugs for orphan diseases. It’s the only way that patient population could conceivably be served, and of course I’m part of that population. I see that as totally different from charging a grand for an epi pen or insulin because you can.
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What Life? |
Its selfish but were it my sister, I'd suggesting waiting for the phase 2 trial.
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