Wednesday, August 29, 2012

My Cousin's Pancreas

From Wikipedia

Haley, my 2nd cousin, daughter of Betsy, has a lousy pancreas.  If it made sense to hate body parts, I’d hate  Haley’s pancreas for not doing better by her.  Haley is diabetic.  And before you bombard me with arguments about behavior and choice, Haley suffers from juvenile diabetes.  This is not her fault.  Like I said, her pancreas just lets her down.

The sad part is that so do we.

This young woman is a vivacious, funny, interested and interesting, typical drive-her-mom-crazy teenager, a great little sister, and fabulous cousin.  Did I mention that she is a diabetic?

Do you have any idea what insurance and co-pays and deductibles and out-of-pockets and medical accounts and . . . and . . . and . . . cost?  None of that comes even close to the worth of her smile.

But the stockholders of the big pharma companies should be pleased; based on the costs of Haley’s care alone, they should be doing quite well right about now.

Here’s the thing: Erica Dee, a FB friend, has been waxing economic on health care.  I’ve been asking lots of questions and she has some thoughtful answers.  The one that is staying with me is her report of a decision taken in some African countries to focus their energies on health and wellness as an economic decision, as an investment.  She also says that being forced to make personal economic decisions out of health needs actually hurts the overall economy.

I don’t know all the whys and wherefores, but that makes sense to me.  But I can never divorce the discussion about how we ‘invest’ our government and private sector dollars from Haley’s smile – it’s just too personal and too real for me to do otherwise.

When I do try to step back, here’s what I keep coming back to: this is not a question of resources.  Like food, it is often a question of distribution.  Technology is expensive.  But not that expensive.  As a fellow named Jay reported on the blog Diabetes Mine earlier this year, the same bottle of insulin that costs him $129 in the US costs only $45 per bottle in Canada.  But it’s illegal for someone in the US to purchase their medications from Canada.  What apparently is not illegal is for the same companies to charge triple in the US what they can charge in Canada, simply because they can.  And bear in mind that the drug companies are actually making profits from what they’re selling in Canada too.

I don’t know if or how much the Affordable Healthcare Act will help Betsy, a full-time working mom, meet the expense of Haley’s on-going medical needs.  I hope and pray that it’ll help some.

But isn’t it time, isn’t it past time, that we stopped yelling at people for being sick, blame sick people for being ‘lazy’, accusing those whose medical expenses exceed their income of being bad or morally flawed and started down the road of compassion?

Maybe we can learn something from the military model of honor.  That largely unspoken code holds that no one – no one – is left behind – ever.  A member of the unit may choose to be left behind, but the unit never leaves him behind.  That’s the code.

It’s costly to carry the wounded and the dead – it slows you down – but what the unit recognizes is that it would cost them far more to do otherwise, for not all costs can be measured in the moment or along the baseline of survival of the fittest.

So how do we solve this?  I am not sufficiently economically savvy to know.  But a few random thoughts occur:

1. Reimplant honor as part of our national code of conduct.

2. Consider creating health cooperatives or unions, sort of like food coops or the credit unions that arose during the Great Depression and in the face of the failure of the big banks.  Whatever profit there is, if any at all, is kept to a minimum, as the focus is on providing the service, not on making money.  This doesn’t eliminate people being paid a fair day’s wage for a fair day’s work.  What it does eliminate is the payment of money to investors, we skimmers off the top who contribute nothing to the process.

3. Reevaluate the necessity for the requirement in the US of having so many pharmaceuticals by prescription only.  I didn’t know this, but apparently it was only in the early 1990's that insulin could only be obtained by prescription.  The balance between health and safety and affordability is a delicate one, I own, but too many competing interests have resulted in rules that benefit not the patient they purport to protect, but the business that exists to profit from, rather than serve, them.

4. Consider regulating drug prices, particularly life-saving or -preserving drugs.  The consumer of such drugs is a captive market with absolutely no bargaining power.  Thus the market will bear virtually unlimited costing.  There is no willing buyer/willing seller transaction possible for a diabetic purchasing insulin.  It is for just such inequities that the idea of price controls exists, even in a free market.

5. Repeal the law which prohibits the United States government (the largest ‘consumer’ of all) from negotiating prices for prescription drugs.  It’s not a panacea, but what reasonable person (the mythical creature in the law who is held to always act in his or her own best interests) abandons their own right to bargain?

6. Engage in a concerted grass-roots effort to organize to provide for medical expenses for those who cannot afford them with an accompanying arm of that effort dedicated to negotiating with the providers to reduce their prices.  It’s the idea common to debt collection as an industry that some money now is worth way more than little or no money later.

7. Eliminate hospitals which self identify as not-for-profit being allowed to amass profits (they do this by calling the money ‘reserves’ rather than ‘profits’).  I would eliminate profit for all hospitals, but I don’t think we’re ready for that just yet.

8. Challenge existing charities that focus on particular diseases, such as diabetes, to dedicate, dollar for matching dollar, as much money to providing for current needs as they do for research.  Research is crucial.  But so is caring for those suffering now in real time.

9. Dedicate our best minds to the ‘African solution’ of investing in health as an investment in our economic as well as health well-being.  Commit to fund their work.  And listen to and heed their recommendations.  Oh, and when any board, committee, task force, or think tank is created to address health care, be sure to include consumers as a substantial presence and voice.

10. Eliminate the in-bed-with culture between doctors and pharmaceutical companies.  That could be done right now.  All that has to happen is that doctors develop, as a group, the will to make it happen.  Let’s shame them into it.

11. Eliminate the ability of any health care provider (this might only be possible for hospital care) to know the source of funds or payment before providing services.  Keep all information about insurance or its lack, Medicare, Medicaid, self-pay or charity case, away from every chart, every computer entry, every place where the providers of health services would have access.  We treat people differently based on class as well as race, gender, etc.  Let’s remove an obvious source of bias and see if the quality of care that the poor receive improves.  Of course, that would also require the rich to keep their mouths shut and I’m pretty sure we won’t.

And please, please, please, if you’re going to respond, do not tell me how I’ve got it wrong unless you’ve got at least 2 ideas for every one of mine on how we can get it right.  Please.

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