Two recent articles in the New York Times recounted tantalizing stories of successful cancer treatments found after heroic and expensive efforts to map the patients’ tumor genomes and compare them to their native genomes, and then to use clues found among the differences in the genomic signatures to identify potential targets to inhibit with the panoply of targeted agents available off the shelf.
One of the patients described is a cancer researcher with acute lymphoblastic leukemia; the other was a wealthy and well-connected woman with an advanced T-cell cutaneous lymphoma. The articles are compelling and worth reading, and I won’t belabor the details of the similarities and differences found within the patients’ stories, except to point out that both patients benefited—one very temporarily and the other in a more prolonged way—from resources and connections that led to the laborious and expensive efforts to map their tumors and to use the resulting information to identify potential therapies.
These poignant stories raise both a general and a specific ethical issue related to so-called “personalized medicine,” the buzzword meant to invoke the promise of genetics-driven science that eventually will permit us to tailor therapies to patients based on their individual disease-specific genetic profiles. The general issue is that, at a time of intense scrutiny of the costs and benefits of medical treatments, “personalized medicine” holds its promise only at the substantial cost of widespread use of the awesome tools of molecular science. Can we really afford personalized medicine or, more specifically, are the benefits of personalized approaches to therapy worth the costs? The other issue has to do with the little bit of indignation we feel (as clinicians with a strong sense of our fiduciary responsibility to all patients) when reading these two particular stories. This feeling derives from our sense of fairness, or more precisely, of equity. The only reason these two patients were able to identify and take advantage of new treatment options had to do with their resources: wealth and connections far beyond the capacities of less advantaged individuals. Is this ethically acceptable to us?
On the one hand, people with resources have always had many advantages with respect to their health and healthcare (to say nothing of other dimensions of their lives): access to doctors and specialists, choices of treatment centers, and the ability not to sweat the out-of-pocket costs increasingly associated with medical treatments. Maybe these are just extreme examples of this at the edge of a spectrum of advantages we live with and seem to accept without indignant sentiment. On the other hand, if the tools used in the service of these patients are available, then why shouldn’t we be deploying them on behalf of all of our patients, regardless of their personal resources?
I read these stories with excitement and trepidation. We will be forced at some point to weigh the cost-effectiveness of the amazing tools for fighting disease that humans are in the process of rapidly developing. Inevitably, these tools will be utilized in ways that align with—maybe even reinforce—the disparities that currently exist within our healthcare system because the conditions of disparity within the US healthcare system are too pervasive to be overcome in one fell swoop. In the meantime, these stories should cause us to reflect deeply on whether we want to live in a society in which the promise of such exciting innovations is not spread in more equitable ways. They are a clarion call.