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When conceptualizing the field of bioethics, we typically think of the philosophical conundrums raised by cutting-edge technologies. We think about the role of autonomy in deciding the edge between life and death and reproduction and what it means to be human, or even about problematic nature of certain policy structures, like health insurance. These are important questions. Nonetheless, we should not forget that we have the luxury of sometimes thinking hypothetically about Terri Schiavo or stem cells because we do not have to think literally day-to-day about where our potable water is coming from, or about losing our bodies as means of self-support in the future because we can’t afford the medicine for it today. The disease with which Farmer is most famous for engaging – tuberculosis – has long been “cured”. Except that for the vast majority of those infected with TB, the benefits of known treatments aren’t available in any meaningful sense whatsoever, certainly not for most of the 5,000 victims who die everyday. Until PIH’s groundbreaking work in relying on directly observed therapy, short-course (DOTS), experts had long dismissed the cost-efficiency of treating patients with multiple drug resistant strains, a phenomenon becoming more and more prevalent as struggling public health infrastructures around the world left indigent patients with incomplete medication regimens and worse prognoses. Farmer proved in that it was possible to cure the poor with a more intensive, though costly, approach, arguing adeptly for its ultimate value given the ramifications of a pandemic. Moreover, however, Farmer and PIH stand for the principle that any treatment possible in the modernized “West” should be considered practical for every citizen of the world. As stated while speaking at Villanova’s nearby campus, Farmer does not want to accept the “double, triple, quadruple standards” that apply in most health policymaking for the “developing” countries of the world. Working in Haiti, Peru, Russia, and most recently Rwanda, PIH have insisted upon one standard of care, the highest possible, for each and every patient, regardless of their country’s GDP or lack thereof. Insisting upon a flexible model that holds community-based health care as the gold standard of improving health, PIH embodies a hand up, not a handout: “The work that we do in Haiti is done by Haitians.” Moreover, Farmer emphasized the solidarity of their approach based not on a sense of compassion alone, but a firm right to justice. Noting the criticism of a renovated Rwandan pediatric ward with non-necessities of nice floor tiles and flowers, he retorted that the democratic government had reflected its citizens’ right to allocate resources as they saw fit rather than settle for projects done on the cheap. “I’m not saying there should be a right to flowers, although I don’t know that that would be a bad thing… but a country building its own health infrastructure is not philanthropy”, surely not one meant to be directed from the outside by foreign “experts”. Farmer exhorted that to comprehend current health conditions, historical awareness is crucial: The disparity of black versus white children in asthma outcomes requires understanding the history of American discrimination, which in turn shares a common link with the difference that makes certain children prone to landmine injuries in Africa. Societal factors are reflected everywhere in the structural violence of war, politics, money, and geography; the burden of illness for most of the world is inherited with intergenerational poverty. These gaps in access are ones that bioethicists today and in the future would do well to address. As part of the medical and human rights communities along with Farmer, bioethics should lend a critical voice about the fundamental problem of entitlement to, not just availability of, the fruits of modern medicine, whether research or practice. After all, for all the usefulness of thought experiments involving hypothetical conundrums or reviews of emerging ones, there stands an even greater amount of gain to be made by advocating for the billions of people who have tangibly suffered as patents expire and after technologies retire, their persistent illness as great a dilemma as any. At the Penn Bioethics Journal, we hope that hearing from Dr. Farmer, one of the leading voices on the forefront of facing this challenge, will lend perspective to working out the problem.
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