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post #314
bio: stu

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· Deadwood, Seasons 1 & 2

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Notes on Sobriety
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Brain Fog
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Uber, but For Wrong Numbers
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No more Secondhand Drugs
The news reported in the New York Times, which I've had forwarded to me by a half dozen people, is that an FDA panel has recommended the FDA approve the first new medication for Lupus treatment in over a half century. Benlysta is the uninspiring name of this new drug, expected to be formally approved sometime in December.

This is encouraging--I was starting to think that drug makers had forgotten us. There are currently no drugs designed just for Lupus. The last Lupus drug was taken off the market. Everything else I take is a secondhand drug. The drug that I take daily is a repurposed antimalarial drug that is shown to be effective against Lupus. The drug that I take when I'm having a flare is prednisone, which is the standard drug that anyone takes for an autoimmune disorder: it is a blunting instrument that turns the scythe of my immune system into a dull knife suitable only for dealing with spreadable cheese*. This is good for keeping your immune system from killing you, but not so good for letting your immune system kill the things that want to kill you.
*We're speaking metaphorically here, understand.
It's not quite understandable why drug companies wouldn't be working as hard as they can to invent more Lupus drugs. Lupus isn't a degenerative disease, so if you can find something to blunt down the immune system properly, you suddenly have a lifelong customer who will pay whatever it takes for decades without inconveniently dying on you.

Enter Benlysta. This new drug is estimated to cost $30,000 a year. It requires monthly intravenous infusion by a doctor. Those taking it in the experimental phase suffered from "a slight rise in deaths and suicides among those getting the drug compared to a placebo" (which strikes me as problematic). And even those advocating it reported that it only had marginal efficacy.

I don't know about you, but when I hear that a drug I might take has "marginal efficacy," my heart goes pitter pat. But that might just be because I forgot to take my heart medication this morning. Anyway, I'm choosing to focus on the "efficacy" rather than the "marginal," for right now. Because I'm a glass-is-half-filled-with-disease type of guy.

I will probably not be first in line with this medication. The cost and inconvenience and potential suicidal thoughts and marginal efficacy all seem to conspire against me clamoring for it immediately.

It's just nice to know that they haven't forgotten about Lupus entirely. As it is a disease that primarily affects young minority women, I guess I was afraid that they were focusing mainly on drugs for diseases that affects rich white men instead. Though who knows, maybe something like Cialis will wind up being effective against Lupus, entirely by accident.

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