Alexilulu

One of the most banally evil things i regularly interact with on a daily basis is the way that medications with established clinical use in a disabling, fatal condition are rationed or withheld from patients who do not fit a narrow criteria of what they perceive as the only accepted way to get it

Which is, frankly, so beyond evil that it feels like a joke. Even in the world where this is just barely cutting the mustard as far as slowing rate of functional decline, that's still *something*. These people are staring down the barrel of a median survival rate of 2-2.5 years, <3% living 10 years.

One of the most banally evil things i regularly interact with on a daily basis is the way that medications with established clinical use in a disabling, fatal condition are rationed or withheld from patients who do not fit a narrow criteria of what they perceive as the only accepted way to get it

What often happens with drugs like this is that following approval, the insurance companies review the Phase 3 (randomized clinical trial in affected patients to compare its efficacy vs placebo) study and then set up their clinical criteria for coverage to follow it. The study becomes universalized

One of the most banally evil things i regularly interact with on a daily basis is the way that medications with established clinical use in a disabling, fatal condition are rationed or withheld from patients who do not fit a narrow criteria of what they perceive as the only accepted way to get it

Radicava has a billed cost (what you send to insurance, not what they or you pay) of $15,000 a month, but it slows functional degradation in early-stage ALS patients by a mean of 2.5 points (ALS is assessed by a scoring scale of functional activities, the ALSFRS-R, each rated from 1-4, with 1 worse)

One of the most banally evil things i regularly interact with on a daily basis is the way that medications with established clinical use in a disabling, fatal condition are rationed or withheld from patients who do not fit a narrow criteria of what they perceive as the only accepted way to get it

ALS, Amyotrophic Lateral Sclerosis (or Lou Gehrig's Disease as it was once known), is a motor neuron disorder that results in progressive and fatal loss of control of upper and lower motor neurons, eventually leading to being unable to speak, eat, drink or breathe without mechanical assistance

New music tuesday stuff im listening to today as i do it: jazzy13.bandcamp.com/album/peace-... banger irish electropop/eurodance

shabazzpalaces.bandcamp.com/album/its-a-... local act, electronic hip-hop, pretty eclectic sound but i'm enjoying it

New music tuesday stuff im listening to today as i do it: jazzy13.bandcamp.com/album/peace-... banger irish electropop/eurodance

Why do they call it the World Series when only Man (人) and Earth (地) are represented by the teams in the Brewers (humanity's greatest invention, fermenting) and the Rays (creatures of the vast ocean)? They totally forgot to include Heaven (天)...

Proposing that a third team be entered into the World Series and every inning the Mandate of Heaven (天命) is passed between teams based on portents and field circumstances, and that team's roster is added to that team's own during that inning. If the team that wins has the 天命 at the end, they win too

Finished CrossCode's main story last night (DLC up next). Extremely sick game that was made in a lab for and by the people who went 'what if isometric zelda required you to be doing DMC stance gameplay and also its puzzles were designed in a lab by geometry perverts'. Really really good