Never done this before, really: my tendency is to drop in comments here and there, with an occasional diary to call attention to something that seems to be getting ignored. That I should actually contribute something that is more or less heartfelt would scandalize the majority of my friends and probably destroy my cred with anyone who has ever worked for me.
-flop-
Last week, after rather a lot of palavering with assorted medical specialists (occasioned not by significant symptoms but by my 35 years of smoking Camel straights and a wife who's sure you can't do that without becoming a walking tumor), I was diagnosed with Chronic Myeloid Leukemia (positive for Philadelphia Chromosome for what that's worth). No sympathy, please, that's not the point here: I have a rather perverted attitude toward death & am not overwhelmingly bugged by the prospect of whittling a decade or two off the other end. Afterall, I should be able to avoid most grey hair, baldness, not to mention senility and incontinence; I also am looking for people to borrow longterm money from...sign up now.
What this is about is pharmaceuticals. Gleevec, the current fave among oncologists who dig leukemia, goes for [hold onto your hat] about $35K per year for a standard dose. My wife wandered into our local pharmacy to pick up my first prescription and about had a coronary; she called me, whereupon I uttered something unforgivable along the lines of "I'd rather die". And what we were talking about was the PRICE TO US, with what is probably the best insurance available to mere mortals --- until a year ago, she was a Fed, retiring with insurance intact. Our bite would have been $750 per month; last time I looked, I could get an apartment for that in downtown Seattle, if I didn't mind sharing it with assorted livestock.
But it gets more disgusting from there: through our on-line mail-order service, we can get it for $35 for a three-month supply.
Somebody tell me this isn't completely fuckin' nuts: pills that cost a couple pennies to manufacture cost the better part of the US median salary to buy? But I get 75% off because I had the good sense to marry into the federal government? And another 20-odd% off of the original price because I can find the Mozilla icon on my PC and remember my password for the on-line pharmacy site?
I like numbers, so bear with me. According to something I read, only about 4500 people in the US are diagnosed with this stuff every year, so I'm special for the first time in my life. 4500 x $35K = $157.5 million. Bucks. Per year. But that's only for CML, which is only one of the things Gleevec is specific for. The drug's been out for maybe five years, so Novartis may not have bagged a billion yet, but I'm betting they have. How many research scientists and accoutrements can you buy for a billion? My #3 sister is at the high end of that racket, so I sort of know that answer: SWAG it at $100K per year and give each $900K in apparatus, bennies and digs, so a million per person-year at the outside. Whatchathink? Did Gleevec take a thousand person-years to develop?
But I'm mumblefucking, wandering. The point has to be, how many people can actually afford this shit? I might be able to, even at the price off the rack, although it might conceivably cause my wife to consider spousicide even more regularly than she already does. At the standard insurance price, no question, if I were all that excited about continuing my progress toward drooling decrepitude. But how about the other 4499? Half of them are plain old shit out of luck: by definition, they are below the median US wage, which means they are working jobs that almost certainly don't bring insurance, which means they can't even afford dogfood and a cardboard box once the meds are paid for. Maybe Medicaid? I don't know that answer, but I suspect it would only piss me off more.
I need some help here. I determined some time ago, in my professional life, that I'm pretty poor at pleasing people but downright gifted at pissing them off. I'm figuring I have a half-dozen years before I start turning into a puddle of putrid protoplasm, and I'm thinking I might finally have found an issue that could drag me out of my upper-middle-class complacency, drag me, that is, further than my solitary keyboard and the daily Kos site. I'd rather spend it smacking GWB and his ilk around in the international affairs/constitutional law/church vs state arenas, because, technically, that's what my schooling was about; but that schooling was long ago and, in any case, there's an annoying paucity of pat answers in those realms: it all goes ideological way too quick. Whereas this nonsense is so outrageous that it seems as though one could make the occasional dent, at least, maybe guilt-trip a few movers toward a quasi-rational solution to US healthcare issues.
I need somebody to point me toward resources and organizations, toward legislators who are actually paying attention to this, toward foundations, toward activists. I'm capable of googling all this, but I tend to get bogged down in details and drawn into diversions, so please help me filter if you can. NYCeve, I know, is into this business and makes sense on a regular basis. Any others? I'm not sure what I have to contribute, precisely: I'm way over-educated and a moderately bright lad; I'm reasonably presentable for the time being, and have experience as a researcher, teacher, speaker and corporate evangelizer/negotiator. I'm not poor, and, if you look at the numbers, am saving something on the order of $34K per year that I ought to feel guilty about; on the other hand, I'm way too cynical to spread money around without keeping my own eyes on it.
So please have at it, tell me what you know. If you want to contact me directly, my spamalot e-mail address is on my homepage & I check it regularly to see how many people are still convinced that I'm physically underendowed in one way or another. Thanks