My Cure is Killing Me
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The box I received that September day has since gone by other
names, but at the time I called it the 'enchanted box.' Others
dubbed it the 'life support system,' the 'supply,' or, in Germany,
where my priceless stash came in a bag, a nurse called it my
Wundertute, my 'bag of wonders.' To describe the contents of that
box as wondrous is not hyperbolic, at least not to someone who has
just had an organ transplant. In varying dosages and combinations,
the medicines I received that August day constitute the essential
postoperative therapy of the 21,692 Americans who receive organ
transplants every year. Over time, some drugs are lessened, others
discontinued, but the core cocktail of immunosuppressants -- those
medicines that modulate the immune system so that it protects the
body from serious infection, while not rejecting the new organ as
foreign tissue -- are the only way for transplant recipients to
live with the hearts, lungs, kidneys, pancreases, and now even
hands that they obtain from someone else.
That these drugs are essential to the survival of a graft is
indisputable (As my understated social worker at New York's
Columbia-Presbyterian Medical Center says, 'They're not acne
cream.') They're as priceless as life. But they're also expensive.
It costs, for instance, as much as $10,000 to $14,000 a year to buy
the drugs that protect a new kidney from the recipient's immune
system. Before my surgery two years ago, I didn't think about
insurance or the medicinal supply upon which my life would depend.
I was slowly dying and just wanted the kidney, regardless of what
would come after. But as I have learned, surgery is the easy part;
funding the organ's drug habit is the challenge, especially if you
are without medical coverage. At various times I have called my
kidney, which I should love as my own, a dictator, a landlord, a
loan shark. Given that an inability to pay for immunosuppressive
therapy is a major cause of transplant rejection, I have been
finding different ways -- some fair, some foul -- to obtain my
medications.
This is why I call transplantation a miracle with a catch. My
nephrologist, Dr. David Cohen, in an article he co-authored for the
Journal of the American Medical Association, describes the current
practice of transplanting without ensuring drug coverage as
offering the dream while withholding the reality. Almost 50 years
ago, the roughly 71,000 Americans currently on the waiting list for
cadaveric organs would have had nothing to wait for. Recycling
organs was the stuff of myth, bringing to mind Mary Shelley's Dr.
Frankenstein or Cosmas and Damian, the patron saints of medicine
who, the story goes, removed a devotee's gangrenous leg and
replaced it with a Moor's healthy one.
Today, with one person joining the list of transplantees every 14
minutes, this rebirth is, like birth itself, a routine miracle.
Indeed, transplantation is now so removed from gothic fantasy that
Hollywood gets mileage out of it. In 2002, New Line Cinema plans to
release John Q., in which Denzel Washington holds an emergency room
hostage because the hospital won't help his uninsured son, who
needs a heart transplant. Far from being fantasy, the film is based
on two commonplaces in American society: transplantation and lack
of adequate medical care for all.
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