Right to Health: A Buzzword in Health Policy in Indonesia

ABSTRACT

The “right to health” operates as a buzzword in Indonesia to frame health policies as beneficial to citizens. Right to health is equated with access to Western biomedical services. Within the policy on partnership between biomedical and traditional midwives, only the biomedical midwife can fulfill the right to health. The “traditional” midwife is reframed as her assistant. Right to health language hides underlying tensions in relationships between these two categories of midwives by presenting the policy as mutually beneficial. Right to health language is effective in the post-Suharto era as it aligns with other incontestable values, including democracy and modernity.     

Searching for Love and Test-Tube Babies: Iraqi Refugee Men in Reproductive Exile on the Margins of Detroit

ABSTRACT

In this article, I explore the reproductive health problems faced by Iraqi refugees, one of America’s most rapidly growing immigrant populations. Based on anthropological research in “Arab Detroit,” the “capital” of Arab America, I explore the experiences of Iraqi refugee men seeking medical help for their infertility. Most required intracytoplasmic sperm injection (ICSI), a variant of in vitro fertilization (IVF). However, in America’s privatized medical system—where a single cycle can cost more than $12,000—few could possibly afford this assisted reproductive technology (ART). Although Iraqi refugees had diasporic dreams of making a test-tube baby, they were stuck in a situation of “reproductive exile”—forced out of their home country by war, but unable to access costly ARTs in the country that led to their displacement. I elaborate on the concept of reproductive exile, attempting to translate Iraqi refugee men’s reproductive agency and desires, but also their profound disappointments.     

Humanitarianism from Below: Sowa Rigpa,the Traditional Pharmaceutical Industry,and Global Health

ABSTRACT

In this article I explore, for the first time, the relationship between Sowa Rigpa (Tibetan medicine) and global health, tracing “the global” in ethical discourses and pharmaceutical innovation practices of Tibetan medical practitioners. I argue that Sowa Rigpa’s engagement with the world and its global health activities outside China can be understood as a form of “humanitarianism from below,” while its industrialization in China aligns with global health in different ways. In providing new insights into recent developments of Sowa Rigpa, I aim to decenter the notion of humanitarianism and contribute to a broader understanding of global health.     

Sovereign Rules and Rearrangements: Banning Methadone in Occupied Crimea

ABSTRACT

In 2014, Russian authorities in occupied Crimea shut down all medication-assisted treatment (MAT) programs for patients with opioid use disorder. These closures dramatically enacted a new political order. As the sovereign occupiers in Crimea advanced new constellations of citizenship and statehood, so the very concept of “right to health” was re-tooled. Social imaginations of drug use helped single out MAT patients as a population whose “right to health,” protected by the state, would be artificially restricted. Here, I argue that such acts of medical disenfranchisement should be understood as contemporary acts of statecraft.     

Living with HIV as Donor Aid Declines in Tanzania

ABSTRACT

Fluctuations in global health funding can significantly impact the lives of people who depend on donor-funded programs for life-long care. In this article, I examine shifting HIV policies that expanded antiretroviral therapy (ART) while reducing “care” services meant to improve ART access and adherence. I describe how these changes were experienced by HIV+ women accessing ART at a hospital in Tanzania in 2011–2012, highlighting their increasing precarity and uncertainty for care amidst donor instability and eroding program services. This research suggests that stable funding in support of long-term care services is important to help HIV+ people maintain life-long ART.     

The Promise and Perils of Open Medical Data

Not long ago I visited the Personal Genome Project's website. The PGP describes its mission as “creating public genome, health, and trait data.” In the “Participant Profiles” section, I found several entries that disclosed the names of individuals along with their date of birth, sex, weight, height, blood type, race, health conditions, medications, allergies, medical procedures, and more. Other profiles did not feature names but provided all of the other details. I had no special access to this information. It is available to absolutely anyone with Internet access. The PGP is part of a trend known as “open data.” Many government and private entities have launched initiatives to compile very large data resources (also known as “big data”) and to make them available to the public. President Obama himself has endorsed open data by issuing a May 2013 executive order directing that, to the extent permitted by law, the federal government must release its data to the public in forms that make it easy to locate, access, and use.     

How Should We Model Rare Disease Allocation Decisions?

When health budgets are insufficient to provide care for all, allocating resources to treat a person with a rare and expensive disorder entails that we cannot treat at least one person with a more common, less expensive disorder. Since any allocation scheme will entail such trade‐offs, how should prudent policy‐makers, concerned about justice and fairness, allocate their community's health resources? In their article in this issue of the Hastings Center Report, Emily Largent and Steven Pearson frame this problem as a conflict between the “rule of rescue” and utilitarian allocation schemes that try to maximize the benefits produced by a given budget. In his article, Norman Daniels discusses the related problem of the “identified victim bias.” I doubt that the problem of crafting an equitable health policy regarding orphan diseases maps onto either of these factors in a way that sheds light on the key moral issues.     

Fog of War: Psychopharmaceutical “Side Effects” and the United States Military

ABSTRACT

The unprecedented reliance today on psychiatric drugs to maintain mission readiness in war and to treat veterans at home has been the subject of ethical debate in the United States. While acknowledging these debates, I advocate for an ethnography of how US soldiers and veterans of the Iraq and Afghanistan wars themselves articulate political and ethical tensions in their experiences of psychiatric drug treatment. Detailing one army veteran’s interpretations of drug effects as narrated through the lens of his current antiwar politics, I examine the radicalizing transformations of self and subjectivity that he attributes both to his witnessing drug use in Iraq and to the neurochemical effects of his own medications. Playing on the biomedical notion of “side effects,” I highlight surprising political and ethical openings that can surface when psychopharmaceuticals and war intersect. Psychotropic medication use offers a critical realm for furthering the ethnographic study of the lived tensions and contradictions of military medicine and medicalization as revealed in militarized embodied experience.     

Rationing Care through Collaboration and Shared Values

Although “rationing” continues to be a dirty word for the public in health policy discourse, Nir Eyal and colleagues handle the concept exactly right in their article in this issue of the Hastings Center Report. They correctly characterize rationing as an ethical requirement, not a moral abomination. They identify the key health policy question as how rationing can best be done, not whether it should be done at all. They make a cogent defense of what they call “rationing through inconvenience” as a justifiable allocational technique. And they wisely call for research on the effectiveness and fairness of this approach and other methods of rationing. I fully agree with their approach to rationing and with their argument that the process they provocatively label “rationing through inconvenience” should not be rejected out of hand. But I believe they have underestimated two ways in which the practical impacts of rationing through inconvenience limit its potential usefulness: the asymmetry of its effect on patients and physicians and the way in which it reduces the capacity of health systems to learn from experience.     

Reproductive Travel to Ghana: Testimonies,Transnational Relationships,and Stratified Reproduction

ABSTRACT

In this article, I address reproductive travel to Ghana, based on research conducted in two private fertility clinics. Both clinics attract clients from West African countries as well as Ghanaian people living in the US and Europe. Their motivations to visit these clinics include positive “testimonies” about treatment results, “bioavailability” of matching donor material and surrogates, lower treatment costs and the circumvention of restricting regulations in the country of residence. Communication technologies are central in facilitating reproductive travel. Finally, I argue that the “international choreographies” of reproductive travel are co-shaped by the unique biographies and transnational relationships of the people involved.     

Experiments in Scale: Humanitarian Psychiatry in Post-Disaster Turkey

ABSTRACT

A massive earthquake that struck Turkey in 1999 generated an unprecedented mobilization of Turkish psychiatrists and psychologists to address the mental and emotional aftermath of the disaster. In this article I examine how these mental health professionals, swept up in a wave of humanitarian compassion, confronted the limits of their own expertise and struggled to improvise a therapeutic response that could match the scale of psychological suffering precipitated by the earthquake. Framing humanitarian and global health interventions as inescapably scalar projects, I explore the pragmatic and imaginative labor involved in making psychiatric expertise scalable, what I characterize as their “work of therapeutic scalability.” In doing so, I raise a series of questions about the psychological subject of disaster, the transnational mobility of technoscientific expertise, and the politics of both life and scale at play in psychiatric humanitarian intervention.     

Lyme Disease and the Epistemic Tensions of “Medically Unexplained Illnesses”

ABSTRACT

In the US, disagreement over the biological basis of “chronic Lyme disease” has resulted in the institutionalization of two standards of care: “mainstream” and “Lyme-literate.” For mainstream physicians, chronic Lyme disease is a “medically unexplained illness” that presents with an abundance of “symptoms” in the absence of diagnostic “signs.” For Lyme-literate physicians, and complementary and alternative medicine practitioners more generally, symptoms alone provide sufficient evidence for medical explanation. Drawing upon ethnographic research among mainstream and Lyme-literate physicians, I suggest that medically unexplained illness is not a biomedical anomaly but an intrinsic feature of biomedicine.     

Diabetic Retinopathy and the Cascade into Vision Loss

ABSTRACT

Vision loss from diabetic retinopathy should be unnecessary for patients with access to diabetic retinopathy screening, yet it still occurs at high rates and in varied contexts. Precisely because vision loss is only one of many late-stage complications of diabetes, interfering with the management of diabetes and making self-care more difficult, Vision Threatening Diabetic Retinopathy (VTDR) is considered a “high stakes” diagnosis. Our mixed-methods research addressed the contexts of care and treatment seeking in a sample of people with VTDR using safety-net clinic services and eye specialist referrals. We point to conceptual weaknesses in the single disease framework of health care by diagnosis, and we use the framework of “cascades” to clarify why and how certain non-clinical factors come to bear on long-term experiences of complex chronic diseases.     

“Like He’s a Kid”: Relationality,Family Caregiving,and Alzheimer’s Disease

ABSTRACT

Spousal caregivers draw upon understandings of shifting relationality to maintain a familial understanding of their spouse with Alzheimer’s disease. Working through what it means to think of an adult with Alzheimer’s disease “like a child,” I trace how spouses negotiate their shifting relationships across the course of Alzheimer’s. While regarding adults as childlike can be perceived as dehumanizing infantilization, for families living with Alzheimer’s disease, conceiving of one’s spouse as like a child can actually enable processes of continued care, sustained recognition, and love to uphold personhood in the midst of often radical change.     

The “Last Child”: Lone Family Caregivers in St. Croix,US Virgin Islands

ABSTRACT

I investigate local explanations for a common family configuration of care for older relatives on the island of St. Croix, U.S. Virgin Islands: the “lone family caregiver.” Through the examination of a paradigm case emerging from these explanations, I argue that local logics can divest some children of obligations to care for their older parents. I suggest that this case is an important addition to recent discussions within the anthropology of care that emphasize how families practice “care across distance,” as it offers an alternative example of how families manage care in the context of migration.     

Personalized genomic medicine and the rhetoric of empowerment

A decade after the completion of the Human Genome Project, the widespread appeal of personalized genomic medicine's vision and potential virtues for health care remains compelling. Advocates argue that our current medical regime “is in crisis as it is expensive, reactive, inefficient, and focused largely on one size fits all treatments for events of late stage disease.” What is revolutionary about this kind of medicine, its advocates maintain, is that it promises to resolve that crisis by simultaneously increasing the ability to be “personalized,” “predictive,” “preventive,” and “participatory.” Some call personalized genomic medicine “P4 Medicine,” inscribing these cardinal virtues into the movement's name. All of these putative virtues have interesting implications for the future of health care. In this essay, we are especially interested in the claims that personalized medicine will lead to a more “participatory” or “patient‐centered” approach to health care, in which patients are “empowered” to take more personal control over their care. The rhetoric of patient empowerment is nothing new in health care, but personalized medicine is an interesting case study because it portrays empowerment as one of its key virtues and as a mechanism for fixing the health care “crisis.”     

Numbers that Matter: Right to Health and Peruvian Maternal Strategies

ABSTRACT

The rights to health and to culturally respectful care are inextricably linked in the documents supporting Peruvian Maternal Health Policy. Strategies of Intercultural Birthing and Maternal Waiting Houses were purported to reduce maternal deaths, while extending the right to health to marginalized indigenous women. Based on 17 months of field research in Peru, I argue that the narrow focus on achieving “good numbers” creates and sustains coercive modes of strategy applications. As a result, the on-the-ground implementation of these innovative strategies made them incompatible with right to health and culturally respectful care approaches.     

Of Drowning Children and Doubtful Analogies

In this issue of the Hastings Center Report, James Sabin and his colleagues ask what responsibility investigators in a learning health organization have to patients when research—particularly research of which patients might be unaware—illuminates problematic aspects of the patients' care. Sabin and his colleagues were confronted by this question in the midst of designing a randomized controlled trial that sought to determine if an educational intervention targeted at patients with atrial fibrillation and their clinicians reduces underuse of oral anticoagulants. Worried about harm that might befall patients in the control group and fearing that they would be negligent bystanders if they knew these patients were at risk and did nothing, the investigators adopted a “workaround.” But the “workaround,” I suggest, was not a solution to the negligent bystander problem. Nor was it a solution to the problem as I would alternatively frame it—how to address instances of suboptimal patient care identified through research within learning health organizations.     

The First Thousand Days: Motherhood,Scientific Knowledge,and Local Histories

ABSTRACT

Since 2013, South African nutrition policy focuses on “the first thousand days,” (conception to two years), informed by Developmental Origins of Health and Disease research. Drawing on ethnographic research, we show how policy foregrounds certain categories of persons and casts “the maternal” as a time frame for interventions to secure future health and argue that this constitutes a “knowledge effect” – the outcome of framing questions in a particular way and with specific knowledge horizons.     

The Hang Up

Over the past year, our ethics service has had numerous consultations involving patients who use the emergency department for regular dialysis. Sometimes, they have access to outpatient hemodialysis that they forgo; other times, they've been “fired” from this kind of outpatient facility, and so the ED is their last option. In most of these cases, we're called because the patient is disruptive once admitted to the ICU and behavior plans haven't helped. But the call from a resident this March 2020 morning was different, the patient had end-stage renal disease and often missed hemodialysis, but he wasn't disruptive. “It's just that he comes in after using cocaine, and given scarcity with the coronavirus and ICU beds….” I have come to think that this is one of the more insidious effects of the pandemic: that there will be a resurgence of the view that some patients deserve health care by virtue of their compliant behavior and that those who are nonadherent don't.