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.
You can certainly link to it. I'd prefer a link than a transfer of the whole thing.
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.
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.
The GOP won't be happy until they've turned us into a more technologically advanced Third World country.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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.]