November 21, 2009
UTNE READER

My Cure is Killing Me

(Page 2 of 9)

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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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