My Cure is Killing Me

A kidney transplant gave the author new life. But like millions of Americans without adequate health insurance, he now can't afford the drugs he needs to stay alive.

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One September morning two years ago, a courier delivered a box the size of a small television set to the door of the house in suburban New Jersey where I lived at the time. I brought it inside, slit the seal, and began emptying the contents onto a sunlit table. First out was a month's supply of a smoke-green pill called Cytovene. Then came CellCept of the blue-and-orange capsule, pink Procardia and Xantax, puckish Prednisone, milky Mycostatin, Bactrim, and lastly, carton after carton of shark-gray, beer-scented Cyclosporine. Though I was familiar with them, the drugs' names and uses were still as strange to me as creatures from a remote galaxy. I stacked the cartons, bottles, and vials to form a small citadel. And in the half-lit room, with shadows and sunlight rippling over it, my citadel became an emblematic tableau, a personal milestone marking the divide between my former life and the one to come.

'For the rest of your natural life' ran the words of my physician and countless pharmacopoeias. For the rest of my natural life, I would not leave this medicinal fortress. For the rest of my life, I would be joined at the hip to the pharmaceutical industry, whose discoveries were and are in large part responsible for this, my life's encore. For the rest of my life, I would be living with a kidney that in cellular terms belonged to my aunt - a kidney that was in me, but not of me.

Stunned with gratitude and helplessness, I looked once more into the box. Within lay a stuffed penguin, the company's mascot, on top of a staggering itemized bill: $3,047.38 for a two-month supply of medicine. For the rest of my life, I would have an expensive drug habit if I wanted to keep my kidney.

Despite this nation's unprecedented prosperity, 45 million Americans have no health insurance, a number that has increased by about one million a year since 1994, according to a recent Kaiser Foundation report. While 85 percent of the uninsured work, or live in a family where someone does, most are the medically indigent: too poor to afford the high premiums of private insurance, yet too 'wealthy' to be eligible for Medicaid. And millions more Americans - not just the elderly, whom presidential candidates like to woo - lack adequate prescription drug coverage. As one of them, my struggle to get the drugs I need every day reaches beyond the problems of someone with an organ transplant. It illuminates the troubles of all Americans, both healthy and ill.

Buying private insurance for a transplantee is either impossible or prohibitively expensive. And Medicare covers only those who are over 65 or disabled, and then for only 44 months after their transplant. For more than a year now, I have been living without insurance of any kind, depending for my drugs on physicians' generosity, the beneficence of friends who live in countries where, unlike here, prescription drug prices are controlled, and on a charitable indigent pharmaceutical program, which provides me with one -- but only one - of the vital medications I need. I have spent much time trying to understand how, without providing basic sustenance to our citizens, we can brag about our wealth and power; why we are still hearing echoes of the promising rhetoric of September 19, 1945, when Harry S. Truman declared that 'the time has arrived' to help the millions of Americans living without 'a full measure of opportunity to achieve and enjoy good health...[and without] protection 'against the economic effects of sickness'; why politicians such as Bernie Sanders of Vermont and Brian Schweitzer of Montana have to take busloads of seniors to Canada to purchase the cheaper, mostly American-made, medications there; and why I, an American, have flirted with the idea of packing my bags for good to live in a land where the sick don't suffer a punitive relationship with their government. For the medications I need keep me alive. They are the rent I pay to stay in my body. In theory, even one missed dose can translate into a rejected kidney. The choices I have had to make (go to the doctor or pay the rent) are so common that they have become acceptable to a nation that prides itself on justice for all.

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.

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