There is thus an inherent tension at the heart of personalized medicine. It purports to both tailor health care and drive down costs, but the more it succeeds at individualization, the higher go the prices. Patients, as a result, can now face an agonizing decision: forgo treatment or suffer financial ruin.
Our family was fortunate. My parents were financially stable, and they had good health insurance that covered the expensive drug. They lived only an hour’s drive to a major hospital network. My father had another thing going for him: the color of his skin. White patients with lung cancer are far more likely than Black patients to receive a diagnostic test indicating whether or not a drug like erlotinib is a good match, and patients from richer neighborhoods are more likely to get access compared with those from poorer neighborhoods.
My dad was ultimately able to leave the hospital and go home, where he continued receiving care, undergoing physical therapy and tying flies in the hopes that he’d one day again wade into the chilly spring waters of the Delaware. The following summer, however, a round of tests revealed that his tumors were growing again. He never regained the ability to stand, let alone cast a fly. On Sept. 23, 2012, a little over a year after he woke up paralyzed, my father died.
Media reports surrounding personalized medicine often forecast a future of health care revolutionized by the arrival of medical magic bullets and biomedical breakthroughs. Erlotinib, though, generally doesn’t cure cancer; it puts it on pause, and when it comes back, it often comes back with a vengeance. Oncologists today can respond by prescribing one of the newer, more expensive drugs. Still, for patients with advanced lung cancer like my dad, the chances of being alive five years after initial diagnosis are terrifyingly small.
Genetic information about patients can result in clinical treatments for certain diseases that are known to be caused by a fairly straightforward genetic mechanism; that’s what made conditions like spinal muscular atrophy and chronic myelogenous leukemia such good candidates for intervention. But those cases are the exception in medicine, not the norm. When we move to common and complex diseases like hypertension, Parkinson’s, diabetes or asthma, where, for a vast majority of patients, there’s no single gene causing the disease, the opportunity for a personalized medicine revolution that can benefit most patients is severely limited.
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