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Cost-Benefit Analyses Then and Now [Feb. 26th, 2011|12:56 pm]
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Richard Rettig has a Perspective article in the February 17 New England Journal of Medicine titled "Special Treatment--The Story of Medicare's ESRD Entitlement."  If that initials don't mean squat to you, that's "End Stage Renal Disease"...and the special entitlement is what opened up access to kidney dialysis for not only current (then current) Medicare beneficiaries but to anyone with that diagnosis.  It was, in fact, a strong step in the direction of the socialized medicine and many people have probably gotten dialysis through that program without realizing it.

The article gives a history, however, preceding the legislation and it's there that my history and the article ran into each other and created the rip tide of emotion that's kept me upset all day and into the night.  It gets to the heart of what was wrong with medical/social/political views in the '50s and '60s, and what's wrong with them today.

In 1958, when I was 13, my mother was diagnosed with end-stage renal disease and told she would be dead in six months.  She had very little kidney function left.  She did not, in fact, die in six months (the good news) but she was never well again.  She had many crises, a lot of pain (renal colic is no fun), and--the point at which my teeth start gnashing--as a divorced woman, she was at the very bottom of the priority list for dialysis, even if it had been available in our area (the nearest dialysis unit was 150 miles away) and covered by insurance (it wasn't, and she was already considered uninsurable.)  

The value of women in the medical marketplace was then, as now, low. White male "family men" were a top priority: the patient chosen to be a show-case for Congress and receive dialysis right in front of the House Ways and Means Committee was chosen because, in the words of the NEJM article, "the patient was a family man, in his prime working years, who could be rehabilitated and returned to gainful employment..."  In other words, he was worth more than a white married man without children, who was worth more than a white single man, who was worth more than a white married woman with children, who was worth more than a white widow with children, and so on down the list...and at the bottom were "unmarried and divorced women, with or without children" (with unmarried women of color no doubt lower than unmarried white women, but at that level nobody was getting treatment, so the effect was the same for all.)   The priorities chosen by the "anonymous" committees who decided who had access to dialysis were supposedly related to the net benefit to society  of keeping each fortunate  individual alive; they were not quite uniform across the country (in some areas religion as well as gender, marital status, and children was a factor)  and because of anonymity and the fact that criteria were only leaked, not openly discussed, there's still a lot of murk concealing the topic.   However, the basics: white "family men" at the top, and divorced and single women at the bottom, was pretty constant.

Though fewer women worked outside the home in the 1950s than during WWII, many women still did.  Virtually all elementary school, most middle school, and most high school teachers were women.  Nurses were nearly all women.  Secretaries were women.  File clerks were women.  Sales clerks in the stores where I lived were almost all women (except in the shoe store and in the hardware store.  The shoe store had no women clerks when I was a child; the hardware store had one--my mother--until she changed jobs when I was nine.)   There were many women bookkeepers (though few women certified CPAs.) And there were plenty of women who, widowed or divorced, were heads of their households and raising children.

But women in the workforce didn't matter as much.  They weren't as valuable to the community as "a family man, in his prime working years"  My mother was not perceived as valuable...she was merely a family
woman and being in her "prime working years" (which she was) didn't mean a thing.  Of course, women weren't paid as much as men (the income gap is still there, though less) so if you see the value of a person purely in terms of their salary...then of course women were less valuable.   Moreover, she was a divorcee raising a girl  (a completely different category from a widow raising a son, in terms of moral worth.)  Divorcees got a clear message that they should just hang their heads in shame and creep around accepting whatever abuse was heaped on them.

I cannot begin to express what it was like, as a teenage girl, to live in fear that my single parent--my sole source of support--was going to die and leave me to the mercy of those I did not trust.   I cannot begin to express what it was like, as a teenage girl, to find out what the priority list was for that dialysis unit in Corpus Christi, 150 miles away--to know that my mother was automatically at the bottom of the list.   To find out that the same priorities held for kidney transplants.  Children in two-parent families, if one parent was sick or died, had another parent who might pick up the slack, find a job, support them.  Not children in one-parent families.  Not me.  And I knew already--had known since first grade--that society considered me next to worthless (child of divorce, child of a broken home) and that girls and women were always--even if from impeccable two-parent families with good incomes--of less account than boys and men.

I had a sick feeling in my stomach for years.  Through the rest of junior high.  All through high school.  Through a couple of years of college, at least.  Would she die tonight?  This week or next?  Before the next birthday?  The tension never let up.

In 1972,  the Medicare program was extended to provide treatment for ESRD for all, using a combination of age (it was already serving those over 65) and disability (defining those with ESRD as disabled.)   For the first time, women as well as men, persons of color as well as white,  poor as well as rich, married, unmarried, with and without children, all had access to the life-saving treatments for renal failure.   By the time the legislation was finally passed to fund dialysis for all with end-stage renal disease, in my mother had survived far longer than expected, on a very restricted diet, and with frequent crises.  I was out of college and the military by then, and married.  My mother still met the criteria for end stage renal disease, of course.   Shriveled-up kidneys don't grow back.  She had, by the way, continued to work full time--though missing some days of work, she worked overtime to make them up as much as she could--through those "prime working years."  In fact, she worked full time until she was 65 (and worked in a volunteer capacity beyond that.)  She opted not to go on dialysis, since her condition was manageable, she thought, the way she'd done it.  It would give someone else a chance, she said. 

Although I was never as forgiving of the system as my mother, I had pretty much gotten over it all, I thought, until this article reminded me of the roots of my feelings about medical care, women, socialized medicine, the prioritizing of people and programs, etc.

I'm not over it, as my reaction to this article proves.   Moreover, I see the same forces at work now, devaluing women in relation to men,  in medicine as well as other areas of politics.    The removal of funding for WIC (Women-Infant-Children food supplementation programs), Medicaid, disability services....all these bear more heavily on women (and their children, if they have them) than men, in large part because women are still struggling to achieve educational and employment parity.   The direct attacks on women's autonomy--especially in the area of reproduction, but elsewhere as well, with women still treated as the cause of problems whose outcomes they suffer--are reversing what progress was made in the '60s and '70s.  
Prominent and powerful politicians--the governor of Georgia, the Speaker of the House--clearly think women cannot be allowed "life, liberty, and the pursuit of happiness" in any way they don't think suits their needs.

The NEJM article states that "the ESRD entitlement was added to Medicare because the moral cost of failing to provide lifesaving care was deemed to be greater than the financial cost of doing so."   And in the long run, the people under 65 who got dialysis under Medicare were mostly able to go back to work, to care for their families, certainly to do more than they could otherwise.  They made money; they spent money that boosted the economy; they paid taxes and that increased the national income.   So there were two benefits--one moral and one financial--easy to measure.  The benefit to the children who still had a parent--maybe even two parents--is harder to measure...but I can tell you it was significant.  

What we have now is too many politicians who will happily tell you they are in "public service"--while not serving the public at all, but their own ambitions and the corporations who fund them.   They would not grasp the concept of a "moral cost of failing to provide lifesaving care"....and that shows how far we've gone in the wrong direction. 

[User Picture]From: lsanderson
2011-02-26 07:26 pm (UTC)
Well Said!
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[User Picture]From: e_moon60
2011-02-27 12:27 am (UTC)
Early on, there were so few dialysis centers that each had its own committee (and "ethics committees" have been around a long time)--and each committee used its own criteria, thought to be locally acceptable. Not any attempt (that I know of or have seen reported) to go for uniformity, but the general social belief that men were more valuable--especially "family men"--put them high on every list I've seen. Some of this came out while I was in high school and college, as there was a push to cover dialysis (in particular) and the peculiarities of the prioritization upset a lot of people.

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[User Picture]From: e_moon60
2011-02-27 12:27 am (UTC)
You can certainly link to it. I'd prefer a link than a transfer of the whole thing.
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[User Picture]From: catsittingstill
2011-02-26 10:18 pm (UTC)
I had no idea there even was a priority list like this. I am appalled, but I'm afraid I'm not surprised.

They would not grasp the concept of a "moral cost of failing to provide lifesaving care"....and that shows how far we've gone in the wrong direction.

Yes. Well said.
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[User Picture]From: e_moon60
2011-02-27 12:30 am (UTC)
There's a strong feeling in some parts of this society that only certain people "deserve" certain treatments and others don't. It's understandable when transplant lists are biased toward younger patients than the very elderly (how much "life" will a person have if the procedure is successful? How much "life" will another candidate have if denied the rare organ?) But gender biases, and race biases, are, in my view unconscionable.
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From: paulliver
2011-02-26 10:37 pm (UTC)
The GOP won't be happy until they've turned us into a more technologically advanced Third World country.
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[User Picture]From: e_moon60
2011-02-27 12:32 am (UTC)
First world for the CEOs; Third World for the peons. And the technological advances--in medicine as elsewhere--will be for the rich, who may hand them out here and there to ensure the loyalty of their particular peons.
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[User Picture]From: ysabetwordsmith
2011-02-26 11:02 pm (UTC)

Thank you!

This was very insightful. I have linked to it.

Thank you for taking the time to lay out the anti-health-care campaign and stab it repeatedly in the eyeballs with a very sharp point.
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[User Picture]From: starshipcat
2011-02-26 11:57 pm (UTC)
Your story also underlines the powerlessness and vulnerability of the children whose parents are facing these kinds of situations. And quite honestly, the powerlessness and vulnerability of children in general. Even a child with two healthy parents in a stable marriage can suddenly have that situation ripped away for reasons completely beyond their control.

The theme of the mistreated orphan is so persistant in fiction because it resonates so strongly with the fears, spoken or not, that a sudden shift of fortune, completely beyond our control, could suddenly dump (or have dumped, if we're adults) us into that situation of being tossed crumbs and being expected to be just busting wide open with gratitude for having anything at all, because an orphan isn't supposed to compare it with what they used to have, or what children with parents have, but with nothing.
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[User Picture]From: e_moon60
2011-02-27 12:54 am (UTC)
Oh, absolutely the children of two-parent families can be blindsided by fate. And the conditions of vulnerability are often beyond the parents' control as well.

What I'm seeing now, with the perspective of increasing age, is a determination by those now in power to make everyone but themselves more vulnerable, more frightened, which they think will make everyone more manageable. It's easiest, politically, to start with women and children because children have no political power and women have less than men. A woman with hungry children will put up with just about anything to keep her kids fed. Sexual harassment, low wages, long hours...the kids are hungry, you just lean into that harness and pull. Most of the employed women I knew when I was a kid were like that--they put up with everything because they had no alternative.
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[User Picture]From: starshipcat
2011-02-27 01:03 am (UTC)
Oh, yes, the use of children as levers to move the parents. Children's feelings or even their well-being is not taken into account. If they object, they're just being spoiled brats and need firm discipline. Even after they're adults, if they try to get redress for having been used in that way, they get told that they're being selfish, that what happened to them wasn't injustice but merely a misfortune, and they need to Get Over It.
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[User Picture]From: pingback_bot
2011-02-27 12:09 am (UTC)


User meirwen referenced to your post from Just...wow saying: [...] http://e-moon60.livejournal.com/392402.html [...]
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[User Picture]From: green_knight
2011-02-27 12:38 am (UTC)
As the child of a single the mother I have an inkling what you have faced. My Mum was first diagnosed with cancer when I was six; back then I was too young to understand what it meant - I had no concept of 'she might not come back' It recurred when I was fifteen; and by then I believed in medicine - it was a frightening time, but not overly so.

In the US, she would have been either dead or bancrupt, several times over.

If we don't fight for our human rights - and access to healthcare IS a human right - we'll lose them. Much as I would like to think that this is the twenty-first century and the world has become a civilised place, evidence says otherwise. My Mum was part of the '68 generation who fought for a more equal society. Looks like I have to take up the baton.
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[User Picture]From: e_moon60
2011-02-27 01:02 am (UTC)
I found out after high school that a classmate who was also the child of a divorcee watched her mother die of untreated breast cancer--no insurance, not enough money for treatment. I've since met several people who had the same experience...a parent (usually a mother) dying of untreated disease because there was no money for treatment.

Access to health care does not mean "there's a doctor in this town" or "there's a hospital in this town." It means everyone can be seen and be treated when they need it, whether they're employed or not, whether they're young or old, married or single, etc, etc, etc. No different whether you're "out of area" or in your home town.

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[User Picture]From: green_knight
2011-02-27 09:19 am (UTC)
dying of untreated disease because there was no money for treatment.

That's something Europeans associate with Third World countries. Until the health debate in the US, most of us were completely unaware of the toxic US system - and at how many people are perfectly happy to condemn others to death because *they* believe *their* health insurance will cover them. (And then you read Jay Lake's story: he's white, middle-class,educated with a good job and I should believe that his income is well above the median. And *he's* not .having an easy time with fighting for his treatments and the extra payments that were thrown his way - but he's one of the people _the system was made for_ and it's not working so great for *him*.)

Nobody should be arfaid to see a doctor because they can't afford to. Nobody should have to decide between seeing a doctor and a new pair of shoes, between a life-saving procedure and hte roof over their head. And it's not as if the rich are 'earning the money fairly, and thus can decide what they spend it on' - they are all too often earning it by exploiting their workers, by leaving environmental messes for others to clean up or suffer from, and by wriggling out of their tax responsibilities.
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[User Picture]From: e_moon60
2011-02-27 11:18 pm (UTC)
They believe their health insurance will cover them until they need it for something major. I've been on several internet communities for parents of kids with disabilities since I first got online (about 15 years now) and the stories there are heartbreaking (on the one hand) and disgusting (on the other.)

One parent must be available all the time to take the child to and from medical and therapy appointments...which of course only occur in the daytime during normal working hours. Parent are expected to put in additional hours of therapy on their own; this may include medical care normally delivered by registered nurses (because insurance rarely covers that much nursing care even if it's necessary.) Thus one parent cannot hold down a normal job, because at least one parent is needed to do these and other things. Failure to follow orders for medical visits and therapy is considered neglect (regardless of the parent's ability to pay, physical ability to do it--as the child gets larger and heavier, or need to work outside the home.)

It is not, however, considered neglectful of insurance companies to limit what they will pay for: among the typical limitations are caps on the number of medical visits/year, the number of therapy sessions/month or year, and requirements that the child progress at the insurance company's preferred rate of progress or be dropped from therapy because "patient is not showing sufficient progress."

In a two-parent family, this means one parent must make enough to support what is now a family that must spend more than the average family to pay for the medical care of their disabled child. If one parent had insurance through his/her job and the other didn't, then the one with insurance must be the one to keep that job...if he/she can. Because people have been fired when companies were threatened with losing their group insurance because a family with a disabled child "cost too much." People have been stuck in jobs they did not want (including being forced to move to new states, with worse other benefits for their child, such as poorer school programs) in order to keep any medical coverage.

But wait--that's not all. The combination of lack of adequate health care coverage and reduced funding of supports for education and adults who are disabled means that such children are not only likely to be more disabled as adults--they're also going to be less able to earn a living (thanks to less educational support, school districts that cannot afford to make the adjustments necessary for disabled children or hire or trained spec ed teachers who could maximize a child's potential) and less able to survive on the pittance of disability payments. Nor can parents save as much, after paying for the birth-to-parents'-death costs incurred, for an estate that will support the child after their death.

Unfortunately, there are parents who've never faced these challenges who resent even having disabled children in school with their perfect little darlings--who are full of "quit whining" and "if you'd just do X, you'd manage just fine" comments and who need, in my opinion, a serious dose of walking in the other mother's moccasins for a year.
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[User Picture]From: denelian
2011-02-27 06:02 pm (UTC)
i am disabled today, because those priorities, codified a waaaay back then, may no longer be "official" but they're still TAUGHT.

when my hip "broke" when i was 30, when i finally found out i had displaysia of the right hip - my surgeon found out a second, infuriating and heartbreaking fact.
my doctors - when i was 3, and again when i was 8-9, those periods where i'd be hospitalized because i was SCREAMING in pain [which stopped, after 6 weeks of brainwashing at Childrens Hospital Stanford...]
they, at the INSISTANCE of my mother, took XRays of my legs. these included my hips.

my surgeon somehow AQUIRED COPIES of these [because UCSF? doesn't EVER get rid of anything, i guess] there's a note from a radiologist, telling "my" doctor what to look for - a note BACK to the radiologist, where "my" doctor replied "patient is child of divorce and molestation; mother hysterical. female patient suffering hysteria. no further testing required"

if this had been fixed when i was 9, i would have been saved the sex 21 years of chronic pain. had i at least been TOLD about it when i was 9, i could have limited the activities [especially ballet] that were MUCH worse for my hip.

but A) i was a girl B) my mom was divorced C) i'd been molested and D) my mother was a nurse and MADE the doctors do tests they didn't want to do. which they then tried to ignore the results of [and suceeded more than i thought - they tried to ignore the positive Porphyria tests - PLURAL - until they decided that saying "sure, yes, she has acute intermittent porphyria, there's NO TREATMENT, will go away now?" was the better idea]

this isn't the same as DYING because some doctor has prioratized me. [although it might have been - at one point, i ran a fever of 104+ for OVER TWO WEEKS before my doctor would do anything. every day, my mom took me in, my temp was recorded, i was sent home. WTF? in the meantime, i remember being jealous because i watched him SEND TO THE HOSPITAL a boy with chicken pox, a few boys with strep throat, and a boy who's only actual problem seemed to be that he KEPT EATING MARBLES. ok, marble boy probably needed help getting them removed, but...] but it's still completely messed up.

right now, the meds i need to not live in HELL [and really, i do - my AVERAGE daily pain has been an 8 for months, and for the last week it's been mostly at a 9] cost well over 3 grand a month. even when i worked GOOD jobs, i didn't make that much! people bitch and complain that now get medicaid [i can't SIT, let alone STAND or WALK - can YOU, can ANYONE, think of a LEGAL job i can do lying on bed? snarks about prostitution aside, there aren't any, aside from writing - which i hurt waaaaaaaaaaay too much to DO, because pain? is WORSE than the muzziness the oxycodone gives me - and the oxy is the only thing keeping my pain at a NINE]
i started working when i was 15. from the time i got MARRIED [at 17] i often worked TWO. at some points, i worked FOUR JOBS, of 20-40 hours, generally working a good 100 hours a week. at one point, i did this while going to school FULL TIME.

i've PAID for my medicare - if i ever GET it [dear GODS, 5 year wait?!] i've PAID for my Social Security.

but it's "an entitlement" i'm "taking from other people", DESPITE the fact that I PAID FOR IT - and the biggests sins seem to be that i'm 34, non-white, female, and i can't have kids.

is it REALLY better than i live in the gutter, literally? because that's my ONLY other "living" choice - and i'm serious, if my medicaid is taken away and i can't pay for my meds, i don't actually see ANY choice aside from suicide. this isn't bearable pain WITH the damned meds. without
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[User Picture]From: e_moon60
2011-02-27 11:23 pm (UTC)
Those who are behind all this WANT us to be, as others have put it, "crabs in a bucket"--pinching everyone else in the bucket--rather than realizing that we are all in this bucket together and the real problem is those who put us there.

The budget deficit is not the fault of the sick, the lame, the blind, the deaf, the unwed mother, the unemployed...it is the fault of those who spend freely on what THEY want (giving billions to oil companies and others who then funnel money back to them) and who try to make us believe it's each other's fault.

Wisconsin's governor and his cronies deliberately caused a deficit they could then claim made cutting services necessary.

Texas' governor and his cronies did the same thing.

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[User Picture]From: denelian
2011-02-27 06:06 pm (UTC)
erm - freudian slip there? i THOUGHT i was writing "past 21 years" and it came out "sex 21 years"
[probably because a side effect of having HIP issues is that it DRASTICALLY interferes with one's ability to have sex. i love my guy, i WANT to, i can't freaking SIT, i'm supposed to have PIV? don't mind my bitterness, i MISS sex, i spend 20 years in therapy to be able to ENJOY it, and now it's gone.]
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