So you’re chugging along doing all the things you do as a responsible citizen, you work, and pay your bills and your taxes, you are there for your children, and fighting for your marriage, you even volunteer. It’s spring, 1998, and gradually you just become so tired it’s a struggle merely to climb a flight of stairs.
Oh, well, you do have two daughters in college, another nearing the end of her senior year in high school, a son in middle school, a full-time job, a house to take care of, are back in college, and have two dogs, two cats, and oodles and oodles of marital strain.
Fatigue sort of goes with the territory, and like many working moms, you just push past it. You get up, you get the family off in various directions, you go to work, you go to class, you cook dinner, you help with homework, go to games and track meets, do housework, set boundaries for the two kids at home and field frequent counseling-like calls from the two who are not, you try to work through problems with your husband, and you collapse exhausted into bed, get up the next day, and do it all over again – it’s a routine you dare not interrupt with reflections on your fatigue – there is no time.
Then one day...
Downtowner's diary :: :: You show up two weeks later than you should have to the hairstylist (pretty common when you are constantly pressed for time) and instead of the usual lecture about the color of your roots, she turns you around in the chair and says:
"I look at people’s skin tones all day long and try to decide the best coloring for their hair, and I can tell you this: gray is not a normal human skin tone. Get out of here right now and go see your doctor."
For some reason, though she is not the first person to note you don’t look your best lately, this is the one thing that manages to penetrate the fatigue-fog and you do as you are told.
You call on the way, check in, sit down in the crowded waiting room resigned to waiting for a couple of hours, and a mere minute later the doctor, passing by the glassed in sliding windows on the other side of the wall catches sight of you, comes out, and demands to know: "How did you get so anemic?" You say, "I am?" He says, "Come with me right now" takes your hand and drags you back to an examining room.
Later that day, at the oncologist/hematologist office, this new strange doctor takes blood, orders up an outpatient transfusion, tells you that you no doubt have acute myelogenous leukemia, could keel over dead at any moment as long as you are untreated, and should now go home and call him the very minute the HMO calls you and tells you to check into some local hospital or the other – but should on no account whatsoever check into that local hospital.
You find this direction to avoid hospitalization confusing, in light of the "keel over dead untreated" stuff and say so. Whereupon oncologist/hematologist guy says HMO will try to check you into local or even regional hospital – because it’s cheaper – but in his opinion no local or regional hospital should be treating leukemia, since cure rates double in large teaching institutions. Risk of keeling over dead while he is arguing for your life with HMO is less than risk of dying in local hospital. Then he writes you a list of five hospitals in Chicago that you can allow yourself to be checked into, and says if it’s one of these ok, but it won’t be, so call me when they tell you to go to a local hospital.
Sure enough, he’s right; they do, the very next day. You call him. He works some magic you know naught of (though local rumor tells you later that he informed HMO that he will be sure to make himself available to testify at your spouse’s wrongful death suit later) and you get the referral to the large teaching institution later that day.
Telling your children...no, you won’t write the details here, beyond saying that especially for someone who lost a parent at the age of eleven, it’s the hardest thing you’ve ever done to try to be honest about the prognosis (which is grim) but reassuring about your love for them and intent to fight for your life.
Skip ahead then. On your first day in large teaching institution, you are visited by a social worker, who surprises you by demanding to know not the details of your home life, or about your state of mind on being diagnosed with a more-lethal-than-not form of cancer, but simply: "Who is carrying your insurance, you or your husband?"
You think this is rather cold for a social worker and inform her somewhat frostily that you are sure the bill will be taken care of – it’s pre-approved.
Social worker looks at you with what you interpret as pity and says it’s really, really important. So you say, spouse, as you work for small non-profit that offers no benefits, but also admit to her that you think marriage is for sure doomed now.
"Good, good!" she says.
And you wonder why, why, on top of extra-lethal form of cancer, must you also get unbalanced social worker?
She must be able to tell from your expression that you think she’s nuts, because she explains, like so:
If you worked for a company that offered insurance, if you carried your family’s insurance, next year your insurer would slap a million dollar surcharge on the company policy for carrying a leukemia patient. The company would get the bill and someone in accounting would question "what is this extra million dollars we are being billed?"
The insurance company would explain to them that the million is for you, and it is yearly, but is, ahem, "fixable." They will say "as long as she is on your insurance (wink, wink) this charge will be there. So what you have to ask yourself (more wink, wink) is whether this employee is worth a million dollar a year salary on top of what you are already paying her."
Social worker said she had seen small business owners go almost broke trying to cover this charge, and had even heard of one who defiantly did go broke, throwing all of the employees out of work. But more usually, she said, they just fire you.
"Wait, wait!" say you, "Isn’t it illegal to fire someone for their health history? Suppose I’m all well and working?"
She looks at you with more pity, says yes, so of course they will have to find "cause" to fire you, which any employer can always do.
"But I am a very, very good employee!" you protest.
"Yes," she says, "but they can always find some cause." The real problem she goes on to explain, is that you will find a new job, that company’s insurer will slap them with the surcharge, they will take their turn at firing you, until you’ve been through six or seven jobs in a year, fired "for cause" from all of them, which of course looks very, very bad to a prospective employer.
"So in a year or so of this, you will not just be uninsurable, you will also be unemployable."
She asks who your husband works for, since they’d probably try to do this to him too. You say he is a cop working for a municipality, which pleases her. "They have all sorts of layers of officials, elected and otherwise, to work their way through to get to the decision, then once they do they have to get past his union, so it will take much longer to get him fired." She also, though, offered sympathy for the fact that what with the police union and the municipality fighting out whatever "cause" they got him on in such a public profession, it was sure to end up in the local papers and disrupt all our lives – including the children’s – when they did get that far.
You remind her you seem headed for divorce, and she says, well, okay then, just carry the COBRA to the limit and keep on working for small not-for-profits that don’t offer insurance.
You ask her what you are supposed to do for health care and she says sooner or later the insurance companies would force you onto Medicaid – either by means of making you unemployable and broke, or by means of you being uninsured and going through any and all assets you have paying medical bills until you are broke and sick enough that you can’t work, and end up on Medicaid.
You are rather horrified, but have other things (like trying to stay alive and simultaneously on top of what your teenage children are up to from the hospital many miles away) on your mind, and besides, this all seems so uncivilized and melodramatic and "worst case scenario" and...unlikely, somehow, so you set this aside for now.
Continued>>>
http://www.dailykos.com/storyonly/2009/7/7/751100/-How-I-lost-my-health-insurance-at-the-hairstylists