Smuggling Hope

[babylonsister]

http://www.motherjones.com/news/feature/2004/03/02_403.html

Smuggling Hope

News: Her father was dying, and the drug company wanted $47,000 for his medication. So she did what any daughter would do: She became a liar and a fraud.

By Julia Whitty

March/April 2004 Issue



Two years ago my father phoned to tell me that a new prescription from his oncologist—what amounted to his last line of defense against the cancer he had been battling for years—was beyond his reach financially. His previous treatment had worked far better for him than for the average patient with his condition, but its efficacy had dwindled during a long sabbatical from drug treatment, during which he underwent a major surgery. Now faced with either an old drug regimen that no longer worked or a prohibitively expensive new drug, his only realistic option, he told me, was to forgo further medication. In other words, he was prepared to die. I had a hard time accepting this. With his engineer's mind, my father had managed to navigate his way through the murky realms of conflicting treatments and doctors' opinions, keeping himself alive far beyond his original prognosis. At the time of his call to me, he was fit and strong, and his cancer—which had been stabilized by the previous treatments—was currently progressing at an almost imperceptible rate. Yet I knew what he probably did not: that his end from this particular disease would be, in the words of an oncologist friend, "one of the worst deaths possible." If there was any way around this, any way at all to spare or delay the suffering that lay ahead, I was prepared to try it.

Two years later, and a few months after my father died, my mother took the train cross-country to visit me in California. Somewhere in Nebraska—in the course of a 10-hour Amtrak delay—Congress passed the Medicare drug bill. During the dreary wait for railroad repairs, a fellow passenger asked my mother what she thought of this bill. She didn't like it, she said, at which point the passenger confessed to being an employee of AARP, and added that the AARP employees didn't like it any better themselves. The consensus-of-two was that this was a welfare plan not for the elderly or the sick, but for the phenomenally healthy pharmaceutical industry.

Somehow, in hearing my mother tell this story, the saga of my father's misadventures in the American health care system came full circle. Triggered by his call two years earlier, I had become something I had never imagined—a smuggler and a fraud—in pursuit of that which my father had never conceived of upon retirement 12 years earlier: a prescription costing so much that it would justify the purchase of an expensive supplemental drug-insurance plan. My family of immigrants, once eager for a piece of the buoyant American economy, found ourselves wondering if we would have fared better in virtually any other industrialized country on earth, where the impossible choice between bankrupting ourselves, breaking the law, or forgoing lifesaving treatments did not exist.

"I don't know why Americans resent paying taxes," my father often said during my childhood. "They don't seem to understand that taxes provide them with things they need." By the end of his life, I think he resented taxes himself, perceiving that too much of the wages of the middle class was spent on corporate entitlement programs, including those aiding the $235 billion-a-year global pharmaceutical industry. By the time of his death, the business of prescription drugs had become the most profitable industry in America, with a staggering campaign war chest of $29.4 million in 2002—enough funds to employ in excess of 600 lobbyists, more than one for every member of Congress, and enough power to make elections and legislation in its own image.

The new drug my father's oncologist was prescribing for him was well known to me (for legal reasons, I will omit its name and the manufacturer's name), for it had a fearsome reputation from decades earlier. How expensive could this drug be, I wondered, when all the research and development had been done 40 years ago, at a fraction of the modern costs? A hell of a lot, was the answer. I still don't know why. But in my father's case, it was about $47,000 a year, with the potential to triple, based on his clinical response, to $141,000 a year. At this rate, in seven years, he could conceivably have spent a million dollars. Although he had profited from decades of employment in North America, he had not profited well enough to pay for that, and he was realistic enough about his medical future to resist becoming "spent out"—the current jargon for those who have anted up all in pursuit of staying alive—leaving him and my mother financially ruined (at which point, ironically, they would have been eligible for free drugs).

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