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[cancer] Work, society and me - Lakeshore
An author of no particular popularity

Jay Lake
Date: 2010-07-28 04:51
Subject: [cancer] Work, society and me
Security: Public
Tags:cancer, health, healthcare, politics
Spent my first day in the new offices of the Day Jobbe yesterday. We were in an all-day meeting, in a conference room where the HVAC had been set to rather a low temperature to compensate for the presence of about twenty people. My hands were tortured by the air temperature. Also, I couldn't open the water bottles, because I no longer possess enough hand strength to twist the cap hard enough to break the seal. It was good to be back among my peers, for whom I have been nothing more than a voice on the phone since last October.

Walked again this morning. Slightly farther and faster and yesterday, with a bit less distress to my feet. It was 81 degrees at 4:30 am around here, so I was fairly comfortable other than the nonsense in my extremities.

This morning in link salad I included a piece from Freakonomics, The End-of-Life War. That piece in turn includes a backlink to one of their earlier pieces on cancer costs. Freakonomics has been critical in the past of the value of cancer treatments.

In my case, the approximate retail value of the treatments I've received to date is in the neighborhood of $350,000. The actual insurance payouts are closer to $150,000. If as expected I have the forthcoming liver surgery and another chemo course, those numbers will rise to roughly $600,000 and $200,000 respectively. I suppose this is the ultimate form of NIMBYism, but I really don't want healthcare cost cutting to begin with cutting my cancer treatments.

The discussion seems to be mixed in with late life and end-of-life care (as with the above Freakonomics link), where costs are often assessed in terms of degree of life extension and quality of life. Given resource constraints, I understand why these calculations are made, and why they are necessary. But as someone who can reasonable expect to live at least another 30 years if my cancer can be controlled, I think even that calculus shouldn't condemn me. Add in conservative political resistance to extending and improving healthcare coverage (in my case, the relevant factor is lifting the lifetime cap), and the calculus becomes even stranger and more inhumane.

As I said a while back, I'm not willing to die for my conservative friends' principles of limited government. Nor am I willing to die for the sake of an economist's calculations. Certainly the costs of my treatments have already exceeded my lifetime payments in to the health insurance system, let alone to my current carrier. What is my life worth to them? What is my life worth to you?

My life is of infinite value to me, as this life is the only one I will ever have.

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W. Lotus: Peaceful
User: wlotus
Date: 2010-07-28 12:35 (UTC)
Subject: (no subject)
Keyword:Peaceful
The problem I have with any economist's calculations in this debate is that we are talking about human life, not mere numbers. How can we put a price tag on a human's life, and would we want someone to put a price tag on ours? I would guess that the people doing the calculating and penny-pinching (with regards to allowing others to get more and more health care) are in the position of never having to worry about paying for their health care--they have enough money and connections that money is no object in the case of any illness--so they can afford to make blithe calculations as though they are only talking about numbers. If it was personal, if it was about their spouse or child or selves, they would sing a completely different tune.
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Jay Lake
User: jaylake
Date: 2010-07-28 12:37 (UTC)
Subject: (no subject)
I can at least claim consistency in my views on healthcare finance and delivery from long before it became a life-and-death issue for me personally. :\
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Kari Sperring
User: la_marquise_de_
Date: 2010-07-28 13:01 (UTC)
Subject: (no subject)
The whole underpinning of the US healthcare system strike me as deeply immoral. No-one's life should be subject to market forces and profit.
If it's any comfort, I have *never* been good at getting the tops of bottles, jars and so on. Welcome to the world of girly wrists!
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Autopope
User: autopope
Date: 2010-07-28 13:03 (UTC)
Subject: (no subject)
As a point of note, the British NHS prices for the kind of treatment you're receiving is around 50-80% lower than the actual insurance payouts in the US system.

The exigencies of billing each patient's treatments to a separate insurer actually add a hell of a lot to the cost of delivering healthcare -- more than the simple administrative costs.
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Del
User: del_c
Date: 2010-07-28 13:51 (UTC)
Subject: (no subject)
Drive-by here to say NIMBY isn't not wanting bad things near you. It's wanting bad things, but not near you.
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User: nicosian
Date: 2010-07-28 14:34 (UTC)
Subject: (no subject)
Like another poster said, I find the US system to be quite ghoulish. On my last visit stateside, it was creepy to see billboards playing on fears "Choose Sunnyside Cancer center!" "our ER has the best survival rates", and it does not sit well with me, this huckstering for people's lives and preying on fears.

What I do know is that here in canada, my lifetime medical cost has probably topped 2million by the time I was 18, due to a vicious asthma, and easily the same for a few people I know.

But the cost? we're all alive, well and productive members of society, no one's questioned our worth on a balance sheet. No one said hey, are you a good return on investment for us?

I do not care for the idea that lives and medical care should be determined on balance sheets alone.

I feel grateful that my healthcare choices have never been dependent on my VISA balance, and despite conservative blitherngs in the US, I have yet to experience any of the horrors they so attach to my country's system. While we are not perfect, ( a system like this is a somewhat organic evolving beast) everyone I know has gotten expert care, the best of care, the full extent of care that is nessesary for their survival.


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miki garrison: bridge troll
User: mikigarrison
Date: 2010-07-29 01:00 (UTC)
Subject: (no subject)
Keyword:bridge troll
"No one said hey, are you a good return on investment for us?"

No one may have said that to you directly, but yes, those calculations are performed on a regular basis, both by the Canadian government at the national level, on the provincial level, and by lots of professors in health economics and health services research.

The real issue isn't whether calculations like this should be done, but how they are used. I can think of lots of situations in which health economics calculations are completely ok, ethical, and even GOOD things to have going on, and to have playing into decision making. But there are also ways in which they can be used for bad decision making, for fear-mongering, and to devalue human life.

Random example:

If drug A and drug B are near equals in both cost and effectiveness, most health care payers (whether that's private or public insurance in the US, or a Canadian provincial system, or the NHS in the UK) will allow providers and/or patients to choose from either medication.

If drug A is significantly more effective than drug B and they are near equals in cost, some health care payers will have systems in place to encourage providers and/or patients to choose drug A -- not *only* because it results in improved health, but also because it can result in cost savings downstream due to additional doctors visits, etc.

If drug A is significantly more effective AND less expensive than drug B, many health care payers will discourage or outright disallow drug B unless the provider and/or patient can show that it is the better choice for this particular patient. Improved health and increased cost savings, win-win.

If, on the other hand, drug A is marginally better than drug B but significantly more expensive, then some interesting economics calculations come in -- and calculations that play just as much into decision making in Canada and the UK as they do in the US. The difference is mostly in what costs they care about. A common example is with antibiotics and bacterial respiratory infections. With antibiotic A, perhaps the average person will get better and be able to return to work 1 day sooner than with antibiotic B. Is that worth a $10 difference in cost? Probably so. Is that worth a $500 difference in costs? Probably not to the health care payer, although in some cases that might be worth it to the individual patient. What about a $100 difference in costs? When the government is paying for the health care costs directly, there's greater incentive to balance it out with worker productivity -- and so, on average, the country may save more money across the spectrum by shelling out for the somewhat pricier med.

But the reality is that these calculations don't just benefit people at the government (or health insurance company) level -- they can also benefit me as an individual receiving health services. If they go with the less expensive antibiotic for 90% of the two thousand people who come in with a respiratory infection today, it's that much more money they're going to have in a finite pool of resources to use on services that might benefit me far more than saving myself an extra sick day.

(to be continued, exceed character limit, oops!)
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miki garrison: bridge troll
User: mikigarrison
Date: 2010-07-29 01:00 (UTC)
Subject: (no subject)
Keyword:bridge troll
(continued from above)

And what if it's not just a matter of an extra sick day, what if it's a matter of survival? It's easy enough to say that no, cost shouldn't be the determination for whether a patient gets life-saving treatment or not. But what if someone's survival chances are 92% with treatment A, and 92.1% with treatment B? Does it matter that treatment B costs $500,000 and treatment A costs $10,000? In a non-infinite pool of resources, that extra $490,000 might have a 1 in a 1000 chance of making a difference in this person's survival, or it might have a far higher chance of saving a greater number of lives if used in a different part of the health care system.

None of that is to say that there are clear-cut choices here. But I think it's naive to pretend that these calculations aren't happening outside of the US, or that they're even always a bad thing. For me, the bigger problem is that too often these calculations are done in closed rooms, one way or another, and that the public doesn't get enough opportunity to weigh in on what they value more. What if for the same amount of money, your health care system could either:

1) Get you well faster after every infection, so that you return to work one day sooner?

or

2) Increase survival from cancer by 0.1%?

#1 probably affects most of the country, and perhaps several times over in a year at that. #2 affects a much smaller chunk -- even out of those who have cancer to begin with, it would only change survival for 1 in every 1,000. For a variety of downstream reasons, I'd still consider #2 a better use of health care dollars -- but I think it's incredibly important to get the public involved in weighing choices like these, rather than having them all made behind closed doors.
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User: nicosian
Date: 2010-07-29 01:38 (UTC)
Subject: (no subject)
I meant it as no one's said I wasn't deserving of the treatments that have ensured my survival and the cost wasn't questioned as "how much more money will we fork over for her".

I'm very aware of the drug cost analysis that Canada does, and found myself on the recieving end of "hey this generic is cheaper so we'lll subsidy that over the one that works better", but I at least have good drug coverage which hasn't questioned my need for the costlier one. I am at least in a position to cover the slight cost difference.

As I gather in the US, I would not be so lucky, I would be virtually untouchable at any price by a profiting insurance agency, and I find that idea, that my life is a line on a profit loss, utterly appalling. I like to think my life is worth something to the society I live and contribute in.

No one I know with a catastrophic illness has been denied. I'm lucky now, I have not had major asthma issues in around 15 years but from 9-19, I racked up those millions, in part by the old drugs which just weren't that good, newer ones really have been my miracle.

It seems to me this is one of the key failures of the US system, is that people can't access maintenance and preventative care. With the right care, I rarely ever have an issue.

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miki garrison: disco snake
User: mikigarrison
Date: 2010-07-29 02:36 (UTC)
Subject: (no subject)
Keyword:disco snake
So in the US, the majority of people who have insurance get it in one of these ways:

1) through a private insurance program provided as a benefit of their job or a family member's job, or as self-paid through their (or a family member's) ex-job

2) through a federally government-funded program (Medicare or Medicaid)

3) through a state government program that does not have pre-existing condition requirements (Medicaid expansion programs, SCHIP, state basic health plans, etc)

If you get your insurance through one of those three sources (which most people who have insurance do), you currently can't be denied enrollment based on how sick you are.

The remaining people get their insurance through other sources, mostly:

4) Self-pay private insurance (most often through the same companies that serve #1, above)

5) Public insurance that *does* have health requirements (usually through programs associated with those in #3, above)

I would be in the highest tier of "undesirable" insurance members, due to my current and lifetime medical costs, plus the projected costs associated with my diagnoses. That said, I have never had a problem getting insurance, because I always stuck to #1 above -- and yes, I've spent most of that time with "for-profit" insurance. Unfortunately, that's meant that my job options are restricted by who has good insurance coverage, it's meant that I can't go off and start my own company, it's meant that I can't ever have "downtime" in between jobs. That sucks and is a problem for many people. It's been an even bigger problem for my sister, since she has far fewer job skills, and most jobs at her level do not provide insurance -- so she has had to settle for relatively crummy jobs to keep health insurance. Her husband may need to switch job fields to ensure that they have insurance down the road.

That said, if I lived in Canada, I'd also have to make life decisions based on health care coverage, although probably to a lesser degree. The meds that keep me functional end up being affordable in some provinces, but not in others. Some jobs allow access to decent prescription insurance, some don't. My meds alone top well over 50K a year before insurance, so it's no small issue.

The bigger problem in the US hasn't just been that people are denied coverage due to pre-existing conditions (much of the biggest problems with that issue were actually fixed during the Clinton administration, and the remaining problems there are mostly being fixed now). It's been the lifetime coverage limits (thankfully, that's being fixed now), and the degree to which low-income adults can end up without insurance options altogether even if they are completely healthy, and the degree to which insurance companies so often screw with self-pay folks who are very sick to get them to drop their policies, and the degree to which insurance companies deliberately set up road-blocks to getting treatment approved. I know the system well, and so am always able to get the treatment I need -- but I spend at least 5-6 hours a month *just* dealing with insurance companies, hospital billing, etc., much of it correcting their "mistakes".

So in the end, I still have wide access to excellent care, *despite* the fact that I'm probably in the highest undesirable tier -- but the system is far more complicated and difficult to deal with than it should be, and I have to arrange far too much of my life around making sure that I get the health care I need.
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User: nicosian
Date: 2010-07-29 03:04 (UTC)
Subject: (no subject)
I've lived in almost half the provinces here and my standard of care across the board has been largely identical.

And I've never really had to worry whether a job offered any supplementary insurance. I am fortunate in that regard.

I currently am on my husband's supplementary, but when we bought our own for drugs, dental, vision, ( at minimal cost, even) there was never an issue of them covering anything. I think I've only ever spent 10 minutes debating over a coding issue with a dentist and my insurer, once.

While some provinces do exercise their own discretion in what they cover over a fairly wide baseline, people don't tend to have to relocate far and wide for care. ( You may have to move if you're extremely rural and you need specialized care, however.)

I think that's where our private insurances diverge, I could have used mine on a recent stay for a more private room but I wasn't even there a full day and I saw no need to occupy a solo room.

And because our insurance cos are not obligatory, they don't entirely have us by the short hairs.

But what I do hear from my friends is they can't obtain private insurance, lost it when they lost their job, got arbitrarily booted off three times during a pregnancy, or they have work insurance via HMO that covers nothing. I am hoping reform helps them, one's a heart transplant patient who is now in the real bind of how to pay for anti rejection meds.

I do find the US system incomprehensibly barbaric in its application, hands down. So little actually seems to go to health and patient care, too many road blocks and I am astounded at a system where an outside arbiter can question your doctor's orders.

More money could be saved if people were able to work, and not rely on being on disability for insurance coverage, or maintenance before a small issue becomes a big one. The US system is painfully asinine, in that it strives to save money ( and generate profit) at the expense of human life. That amount of loss of potential boggles my mind.



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Keikaimalu
User: keikaimalu
Date: 2010-07-28 14:54 (UTC)
Subject: (no subject)
Apropos of the earlier poster's comments about the British NHS's costs, I can't help but wonder why exactly medicine in the U.S. costs what it does, and whether it has to.

I'm a capitalist. I believe that nothing "should" be free, because nothing *is* free -- everything costs something for someone to produce, and why shouldn't they be paid for their efforts? The question is who pays, how, and how much. I pay taxes. I'd be delighted if part of my taxes went to covering potential health-care costs. (I'd be even more delighted if we tossed this "health insurance" thing entirely, because it doesn't make a lot of sense to me.)

I had an MRI a couple of years ago, and I believe it cost in the neighborhood of $4000. The same test in Japan, a friend told me, runs about $150.

I can't help but believe that part of why health-care costs are so high in this country is because they're hugely inflated, to cover not just liability insurance and those who can't or won't pay, but the big huge profits that every business apparently aspires to.

It would be nice if medical treatment were treated like fire safety and police enforcement. Imagine the world we'd live in if every firefighter and cop presented a bill for services rendered. And yet, even though they don't, they still get paid for their work.
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User: nicosian
Date: 2010-07-28 15:15 (UTC)
Subject: (no subject)
If I understand correctly, yes, the costs are inflated to cover everyone in the chain of service, and that chain is excessively long to start with.The inefficiency is massive.

Service here in canada, an MRI can be had for less than 4k, easily, but we also don't have rafts of billing agents, insurance agents, it's direct billed.

I know our care isn't "free". We pay, and I'm happy to do so, but the application of service is not dependent on your specific insurer.

We also pay less in tax that goes directly TO health care than most of my US friends pay in premiums to dead end insurers or HMOs.

I had a medical crisis this year that involved a fair amount of ER, surgery, specialist time and I can't fathom how we'd cover it if we had to pay off copays and the like.

I talked to a podiatrist from florida who only takes medicaid/medicare/cash, because even as they pay a bit less on the dollar for services, they paid him out in 9 days, where the insurers were dragging him for 6 months. He said "I just want to take care of people." But the HMOs he was associated with and the insurers not only roadblock customers, but doctors.



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Autopope
User: autopope
Date: 2010-07-28 17:40 (UTC)
Subject: (no subject)
Part of the answer is that the NHS is a monopsony -- not a perfect one, but pretty close, with over 90% of UK healthcare spending. While it's composed of lots of subunits like hospital trusts, they collectively wield huge power over supplier's pricing; in particular, NICE get to approve or veto treatments for the entire NHS on the basis of a clinically-based cost-benefit analysis, which is a sledgehammer for driving down prices.

Add a very short supply chain and very efficient, streamlined administration and you get another part of the jigsaw.

Add lower salaries and much less need for practitioners to insure against malpractice suits -- they happen, but on a much smaller scale than in the USA, where patients have a financial incentive to prove malpractice to get out of paying for treatment, and the tab is usually picked up by the hospital trust rather than an individual doctor -- and you have lower payroll overheads.

Meanwhile, the NHS isn't part of the government or under direct political management; it's more like the USPS. And politicians who try to meddle with it rapidly discover it's a third rail in British politics -- nobody wants politicians dicking around with their free healthcare. Even Thatcher didn't dare to touch it.
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Magenta
User: magentamn
Date: 2010-07-28 15:41 (UTC)
Subject: (no subject)
To me, end of life care should mean end of natural life. When I'm 90, I don't want to go through chemo to give me a few extra months. Or be hooked up to tubes; a semi-conscious or unconscious body in a bed is not life as I want to know it.

You, on the other hand, are hopefully in the middle of your life, and amazingly productive. I think your life worth every penny it's costing; I just wish the system weren't so rigged that so much money is involved. We need single payer.

I, too, am creeped out by ads for medical establishments.
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Autopope
User: autopope
Date: 2010-07-29 09:53 (UTC)
Subject: (no subject)
What's "natural life"?

My dad's 86. He's in excellent condition for his age, and enjoying being alive -- except for the colon cancer that will kill him in 18-24 months if untreated.

"But he'll be 88!" You might reply. Well yes, but if the treatment is successful he could well last into his 90s, with reasonable quality of life. Then again, he could catch a cold and die of it next week -- octogenerians' health is brittle.

The devil is in the detail.

(Luckily he's in the UK, with the NHS to pick up the bills and a system that was recently rated best in the world for end-of-life care.)
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shelly_rae: Jay & Me Chemo 10
User: shelly_rae
Date: 2010-07-28 16:42 (UTC)
Subject: (no subject)
Keyword:Jay & Me Chemo 10
Hey Jay. At this point my total life medical costs are close to a million. Right now I'm sitting on a stack of medical bills I don't understand and insurance letters saying why they're not paying.

You and I are in the same camp when it comes to our views of health care or the lack of it here.

My life is priceless as is yours.

Anon
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Jay Lake
User: jaylake
Date: 2010-07-29 00:48 (UTC)
Subject: (no subject)
My life is priceless as is yours.

We all are, dear.
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Deza
User: deza
Date: 2010-07-28 17:45 (UTC)
Subject: (no subject)
Run a standard table knife around the seam in the water bottle cap. It cuts the tabs holding the top on, and is a lot less embarrassing than asking someone else to do it for you.

There's a guy in Atlanta who is dying from ALS. He wants to donate his organs to people in need now, instead of waiting until his body has been completely destroyed by the disease. It's considerd unethical for him to do this. I wonder what the economists would make of his decision? It would spare his family the financial strain of dealing with an uncurable illness, keep them in the workplace (instead of using sick time to care for him) and mean any medications used to enhance his quality of life could be redirected to others with a more favorable prognosis.
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Jay Lake
User: jaylake
Date: 2010-07-29 00:49 (UTC)
Subject: (no subject)
Run a standard table knife around the seam in the water bottle cap. It cuts the tabs holding the top on, and is a lot less embarrassing than asking someone else to do it for you.

Sadly, a paucity of table knives prevails in our training room... But terrific advice for at home. Thank you.
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saveswhat
User: saveswhat
Date: 2010-07-30 18:22 (UTC)
Subject: (no subject)
I read the entire New Yorker article, and to me it isn't about the cost-benefit ratio of end-of-life care but rather facing the certainty of death (everyone dies) and thinking about what we'd like it to look like. There are people who find themselves caught in a medical battle until the bitter end, and it isn't necessarily what they wanted or what was right for them. The article is saying that one should think about what's important in an end-of-life scenario and communicate their wishes to their family and caregivers. Some will want to fight until the bitter end, and that's OK.
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