As a pretty ardent leftist, I've looked askance at this whole bill from the beginning. My critiques have been from the left, tempered by a healthy dose of realization that this was liable to be the best we could get because of the dumb way our country runs. But I supported and still support it, even if it wasn't far enough and was reliant on a free (but regulated) market which has abjectly failed in this area maybe more than any other. I have personal reasons why.
In 2002, I was diagnosed with Crohn's Disease. When I was diagnosed, I was working part time at a book store. About 32 hours a week or so, just shy of full time. The dirty secret of a lot of retail places is that they'll keep a lot of part timers hovering just below the full time line to avoid paying benefits. That's just the way it is (well, was; I haven't worked retail since that job, actually).
So when I got sick, I didn't have insurance. And once I was sick without insurance, my condition deteriorated. Quickly. Moreover, my deterioration meant that, as arthritis and physical anorexia kicked in, I could not get insurance. I couldn't work full time. I couldn't afford the premiums if I had been able to due to pre-existing, if it was covered at all.
In 2003, the bottom fell out of my health. I was in the bathroom, no exaggeration, 20 odd times a day. I am six feet tall; I bottomed out at 105 pounds.
My gastroenterologist at the time was lazy. Terribly lazy. My weekly appointments were 40 bucks or so and involved him sticking a finger up my ass, wandering out of the room for 15 minutes, and then returning with, "Well, you still have Crohn's." That was it. That's all that happened, because my lack of insurance precluded anything else. I did get a sigmoidoscopy... go google it. It's as horrifying as it sounds.
At my worst, shortly before my wife and I moved to Raleigh, my doctor told me about a drug which was having a lot of success treating Crohn's. It was called Remicade. But it was too expensive for someone without insurance, he said, so he wouldn't give it to me. That's exactly what he said to me. He told a dying man that his lack of insurance was grounds to let him waste away. Choice? Doctor choice? This was the only gastro who saw people without insurance in town.
We ended up moving to Raleigh. My wife had a job offer, and I'm glad she did. I ended up seeing a new doctor, of course, who immediately gave me Remicade despite my insurance situation and hooked me up with a compensation system which the manufacturers had, a little detail which my old doctor never, ever mentioned, presumably because it would cost him money.
My new doctor wouldn't countenance that. On the day of my first examination, I remember him looking me over and then stepping outside the room. There was a flurry of activity and I heard some very serious discussion going on. He walked back in and, very calmly, said, "I don't want to alarm you, but you're going to be dead within three months if we don't get you turned around." I asked of what, starvation? He said maybe, but more likely organ collapse. Just one of my vital organs shutting down, probably my heart.
He wanted to put me in the hospital that night, with a feeding tube and an immediate Remicade feed; I declined and took my chances. I didn't want to saddle my family with a huge bill, after all. I was uninsured.
I also got on disability, something which my old doctor said I in no way would qualify for. How little did I qualify for it? I walked in and was put on permanent (meaning reviews every 7 years because they don't expect you to ever really recover) disability almost immediately, with no appeal. Anyone who's ever dealt with Disability Services will tell you how rare that is.
My intent is not to rattle this off for sympathy; I've found that, on the occasions on which I did look for sympathy, it was sorely lacking from even those I was close to. I don't want it anymore. My intent is to try to convey just how bad off I was.
Because it was all preventable. The misery, the eight lost years of my life, the missed return to school, the broken friendships, the constant pain, the humiliation of shitting uncontrollably, the lingering anxieties I still have when I go out to eat or go shopping or am somewhere without a bathroom handy... all of it was preventable with even a modicum of sanity in the system we have.
If the ACA was in effect in 2002, when I was sick, I would have had insurance. It wouldn't have been great, my bills would still have sort of sucked, but I would've gotten my life back together in much quicker order.
As it is, there almost was no Ian Williams. There would be no Age of Bronze, no Gonzo, no GameHead reviews, no return to school, no happy family in an owned house, no Iris. And despite all my faults and mistakes, and boy, there have been a lot, this one wouldn't have been on me.
So, yes, the mandate is tough to stomach. Insurance companies suck. But this law, this law, would have changed my life for the better in so many ways if we'd had it when I first became ill. And I get it... we want better. We want that single payer or we want, on the opposite side, the free market to take care of our ills. But this is the country and system we actually deal with. People are dying and suffering now, needlessly, and have for years.
I thought I had mixed feelings about the impending SCOTUS ruling. Just a couple days ago I'd said something like, "Fuck yeah, part of me hopes it gets overturned so we can do the real work of getting single payer!" But you know what? That was an asshole thing to say. And when that ruling came down, I realized I didn't have mixed feelings at all. I found myself crying like a baby, because it's a start. Not perfect, not the best we could do in the best of all worlds, but good enough to relieve some serious suffering on the part of America's citizens. And that's a fine thing.