I know, I know, how dare I start my post with such a dirty word.  A little while back I discussed the problem of Organ transplantation and supply shortage, giving my innovative and fantastically fair minded solution.  Of course, I got not so much a whisper’s feedback, so either readers have sat back in awe and stunned silence of my brilliance, or I am just delusional.  One thing I have no delusions about is the pipe dream of fairly distributing health care to everyone.

  This is no small matter for myself, a hopeless optimist audacious enough to consider healthcare a right or to crusade on behalf of the disabled.  On my sidebar I link to a brother in arms crusading to eliminate global healthcare disparity in the true spirit of Zion. 

     Fair distribution certainly does not happen in this country.  To be completely honest, it does not happen anywhere.  I doubt it is even completely possible.  So I present a post that is really much more full of questions than answers, on a subject regarding which, I have grown wary of those who act as if they have all the answers.  In my cynical moments, I decide perhaps we aren’t meant to ever get a handle on this one.  Sickness, misery, suffering are all part of the package of mortality we so gleefully accepted prior to this life.  But I then repent, because one thing I know for sure, we can and must do better.

     Being an American I am very comfortable with the idea of treating the individual patient, giving them the “standard of care,”  whatever that should mean.  The tricky thing is, what do we do when that standard isn’t available due to the basic fact of economics.  We lack supply and demand is too high.  The ugly and unavoidable answer is that we must ration, and we must work to address increasing supply or decreasing demand or both. 

    This moves things from an individual level to a societal or systems level.  In my experience, there will always be people given the short shrift in any system-wide solution.  Rationing is by definition giving the short shrift.  How do we define who this group should be? 

     Do we include prisoners?  People who’s behavior contributed to their disease (smokers, obesity, lack of exercise)?  Do we decide at the extremes of life that we must impose a bright line for stopping rescue care?  Is there a point where pregnancies should not be resuscitated due to prematurity or the elderly because of, well, age?  Do we feed and hydrate the elderly who can no longer feed themselves or let nature take its course?  All these options are very prone to abuse by insurers motivated to turn a profit.

Do we spend extra resources on leaders of foreign countries or for children in other countries to improve diplomatic relations?  Should it be based on an individuals “worth” to society?  How do we calculate it?  Are children and women a priority or are producers and breadwinners (Or in the case of women who are both, are they the first priority?)  Is it CEOs or laborers.   Do we put health care up to the highest bidder, trusting the all powerful market to fix all consumers problems, with the rationing left up to what their choice and use of their resources?  Do we base it on an individuals net worth?  Do we give up on ever being able to fairly do social calculus and make it completely random?  This latter choice would make everyone crazy and grumble, but every single one of the others is prone to abuse, exploitation, marginalization of the weak in favor of the strong.  I can’t support this. 

      Do we work to eliminate “bad genes” to save money?  How would we do this, sterilize those with genetic “disorder” however we may define the term?  Elective abortion and prenatal diagnosis?  What constitutes a “bad gene.”  Decreased life expectancy? Low IQ?  short stature?  deformity? skin color? poor eyesight/hearing?  decreased work productivity?  This whole line of thinking sends shivers up my spine ala GATTACA.  Yet I know from experience there is a phenomenon called gene guilt.   People who pass diseases on to their children, don’t want to burden any future children with the same cross.  They feel irrational guilt for passing on the gene in the first place.  Your imperfect genes make you “less human” or somehow decrease your rights.  Taken to the extreme, you could internalize this kind of propaganda and commit suicide for the good of society.  Is this the message we want healthcare to send?

    Do we outlaw certain branches of medicine like fertility medicine, which arguably do little for health, create overcrowding, and cause problems in a world where so many children sit in desparate need of adoption, brought into the world unwanted and uncared for?

   What treatments are reasonable and when do they cross the line to unreasonable?  Jana Riess, an amputee who blogs at Pilgrim Girl, had a very thoughtful post that explored the guilt she feelsfor having a super high tech, fantastically expensive, computerized prosthetic leg.  I don’t know how the money spent on her leg would be redistributed to buy cheaper prostheses for dozens of amputees, but this is a systems question.  If we improve the life of the disabled, who pays.  Do we even it up and set an upper limit where we just can’t go beyond?   Should high consumers of healthcare pay more or feel guilty about their consumption of resources.  I have a hard time buying this unless the health problems are self inflicted.

    Here is the crux of the problem.  The rationing that is unavoidable from a system perspective, is highly likely to marginalize the weak and poor of the Earth.  In a market system this is doubly true.  In my field, this is illustrated by a condition called infantile spasms.  This is a very rare seizure type that occurs at the age of 4 to 6 months for various reasons.  Untreated the results are devastating, with severe mental retardation and often continued, unstoppable siezures throughout life.  The only treatment with evidence that it improves this outcome is a pituitary hormone called ACTH, working better the earlier it is given.  This is our chance to make a complete difference in the life of a child.  This is a chance to salvage a brain.  Only one pharmaceutical company produces this drug, and they have determined it is not used often enough for them to make any money with it, so they cut production way back.  Within the past year, the price of a course of ACTH has jumped to over 100,000$!!  Even in medicine, this is an obscene amount.  As a society, how do we determine the worth of a child’s brain?

     Now we are faced with a horrific choice, destine a child to severe mental retardation and intractable siezures, of spend an unbelievable amount of money.  A third option, Vigabitrin, is used in Canada and Europe, but is not available in the USA because a small but significant number of patients develop blindness as a side effect.  Apparently, we care more about saving eyes than the brain.  It is a matter of priorities.   All I can say to the wonks, is that the brain is a very, very terrible thing to waste.  Vigabitrin is slated for approval in the next year or two, but until then, we are left in a terrible quandary.

    This is the fate of “orphan drugs.”  This is what a market driven system will do to those with rare and obscure conditions.  These are the patients I have dedicated my career to.  These are very tempting targets for rationing.  How can we find a way to pool our resources as a society, to care for the weakest and poorest among us?  How can we divide it fairly.  This is key to what makes a great society.  The tension between rationing for the good of many and looking out for the good of the sickest among us is intense.  It is a tension we cannot afford to have snap.

     How do we divide this pool up in order to do the most good for everyone?  This is key for the just society.  This is the great question.  This is my great quandary.  A society who will not make this a priority is a society doomed to failure.   In the end I believe we will be judged on how we care for the weakest among us, how we share and lift eachother.  Against reason, I desparately cling to the hope that it is something we can achieve. 

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