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Risky Medicine
Our Quest to Cure Fear and Uncertainty
By Robert Aronowitz The University of Chicago Press
Copyright © 2015 The University of Chicago
All rights reserved.
ISBN: 978-0-226-04985-4
CHAPTER 1
Risky medicine: Our quest to cure fear and uncertainty
I
On the front page of the New York Times the day I was first drafting this introductory chapter was a story about how a National Cancer Institute working group had recommended that some carcinomas in situ and cancers of low metastatic potential be renamed without the word cancer in them. Removing cancer would by fiat decrease the overdiagnosis of cancer but also might reduce fear and overtreatment.
The overdiagnosis and overtreatment of cancer is part of a larger cost and quality crisis in American medicine today. American health care is more intensive and costly, but our health is the same or worse, than countries which do less and spend less. The modest proposal to rename disease is an imaginative response to one driver of this crisis: the high numbers of Americans who are diagnosed with "early" stages of disease and risk states yet treated as full-blown disease, triggering fear as well as aggressive and costly treatments whose net benefits are often assumed rather than proven.
Unfortunately, our policy responses to what ails American medicine are usually not so imaginative, and have been focused almost exclusively on the organization and financing of health services. We need to reform the way we deliver and pay for care, but these are not the only problems and solutions. In this book I want to draw attention to a profound and consequential historical transformation in our illness experience and medical and public health practices that contributes to many of our health care woes. We have experienced the ascent of a risk-dominated experience of ill health, one characterized by fear, uncertainty, and lack of control, whereas in the past, pain, loss of function, and other symptoms were more central. Along with this, we have more and more public health practices, medical interventions, and consumer products that are largely risk reducing and risk controlling rather than treating symptoms or curing disease.
In the chapters that follow, I will explain how risk became central to the experience of health and medical interventions and flesh out some of the implications of this transformation. While the experience of illness and medical practices have been radically transformed in recent decades, our individual and collective responses have not kept up with these changes. Failure to appreciate these changes has led to wasted resources, hits to our health and peace of mind, and myopic solutions to our cost/quality crisis.
Current received wisdom is that the unaffordable yet underperforming U.S. health care system is due to a number of factors: new technology; greedy practitioners, drug companies, device manufacturers, and health systems; hyperspecialization; inadequate evaluation of medical practices and products; malpractice concerns; and fee-for-service reimbursement. But underlying and contributing to the creation and diffusion of new technologies and shaping demand for services and products, irrespective of work force, legal, or financial arrangements, are changes in how we have defined, labeled, researched, and responded to ill health and its putative causes.
There are three key aspects of this risk-centered medicine that I will sometimes refer to as risky medicine when I invoke these ideas together. One is the market-driven expansion of risk interventions, especially drugs and screening tests (chapter 9). Drugs that cure or ameliorate disease have limited markets. Any particular disease affects only a minority, usually a small minority, of the population. Disease may be self-limited, or worse, from the perspective of pharmaceutical companies' bottom-line, quickly cured by drugs. In contrast, an entire population can be at risk for even a rare disease and be convinced to take a disease-reducing drug for life. For example, cholesterol-lowering drugs aimed at reducing the risk of heart disease and stroke might be indicated for a large fraction of a population for their entire life span. Second is the converged experience of risk and disease. Developments on many levels, within and outside of medicine, have transformed the experience of many chronic diseases into one of intensive surveillance and anticipatory treatment and behavioral change (chapter 2). Third is the way we increasingly understand and accept that many medical and public health interventions are efficacious because they reduce risk and do social and psychological work (chapter 3).
At the outset, let me be clear that elements of risky medicine have always been part of the illness experience. Medical interventions have long targeted the anticipated consequences of specific diseases. But changes in how we understand, name, classify, screen for, and treat disease have made the risk-centered experience of ill health dominant for a much larger proportion of Americans. This experience has been infused with probabilistic knowledge of potential bad outcomes and medical interventions that promise to modify them.
It is also self-evident that the same medical progress that has contributed to decreased mortality and morbidity has also contributed to the growth of new risks and risk interventions. No one wants to set back the clock to the era before insulin, even though as more type 1 diabetics escaped death from acute episodes of high blood sugar (as in diabetic ketoacidosis) they lived at greater risk of heart and kidney damage and a host of other problems. But recognizing and celebrating this trade-off is not a reason to eschew critical examination of every new medical risk and intervention that emerges within the penumbra of medical progress. In diabetes, for example, we have had a problematic promotion of "prediabetes" risk states and calls for preventative treatment.
In making disease, especially chronic disease, risk-centered, we have spawned interventions that do all kinds of work, such as providing reassurance, reducing fear, and signaling responsibility for health (chapter 3). Risk-reducing interventions — calls for behavioral change, screening, preventative drugs — are increasingly prevalent. Their efficacy is necessarily understood in a different way than practices that directly and immediately impact symptoms from, or signs of, disease. Their efficacy often involves some leap of faith, requiring trust in results of epidemiological or clinical research. Practitioners, patients, and consumers at the same time need some witnessed evidence of efficacy — reports of lowered cholesterol, improvements on bone densitometry, or images of healthy bowels. At a more psychological level, efficacy is often constituted by reduction in fear, banishing uncertainty, and reasserting some control over feelings of randomness. Riskreducing interventions and risks themselves are often co-constructed and together constitute a coherent if largely invisible system of belief and practice. This system, often loosely tethered to any specific knowledge production of medical evidence per se, often undergirds efficacy calculations.
This social and psychological work is a major reason why American medicine is so costly and yet not that effective when measured by objective impacts on morbidity and mortality. It creates incentives and provides a rationale for different stakeholders to make decisions divorced from objective impact on bodies and populations. This problem exists for highly visible and often controversial medicalized risk interventions such as drugs to reduce obesity or certain cancer screening tests, but also in less visible and controversial interventions aimed at preventing complications of existing chronic disease.
Many of the current ineffective or costly but marginally effective health practices are risk interventions that have not been adequately recognized, named, or understood. Unless we understand the scope of this change and the historically conditioned processes that undergird them, we will continue to engage in short-sighted after-the-fact policy debates about singular primary or secondary prevention practices, missing the bigger picture and "upstream" opportunities for policy change (chapter 9). The disease prevention landscape has been radically transformed over the past half-century, but our health policies and clinical practices have not been based on an adequate knowledge of this transformation. Health risks dominate medical practice, yet are poorly acknowledged. Demand for risk interventions has been heavily influenced by direct marketing to consumers, the sometimes exaggerated claims of self-interested parties, and problematic assumptions used in the extrapolation of aggregate data to individual decisions.
Understanding the history and reach of the transformed disease experience also provides a much-needed context for consumers, patients, and doctors making difficult health decisions under great uncertainty. A friend of mine was recently diagnosed with prostate cancer after one of twenty blind ultrasound-directed biopsies was positive. The biopsies were triggered by an elevated result on a screening blood test for the prostate specific antigen (PSA), which was added — without any discussion — to his "routine" blood work during an annual visit to his primary care physician. Presented by his urologist with the choice of surgery, radiation, or active surveillance, my friend chose the last. A year after his diagnosis, my friend returned to the urologist for a follow-up visit. The urologist told him that although his PSA level had actually fallen in each of the two postbiopsy visits, he wanted, as part of an active surveillance protocol, to do another set of biopsies. My friend, puzzled and confused, politely said no. The urologist initially tried to change my friend's mind, but after a while gave up, saying it was in the end my friend's choice whether to actively monitor and potentially intervene in and cure his cancer or choose palliation.
The choice of the latter term struck my friend as especially odd. Why invoke palliation, which in the context of cancer typically means treating pain and other symptoms in the last phases of disease? My friend had simply calculated that the possible harms of more needles and what might follow outweighed the very small chance he might suffer health consequences from waiting a while before more probing. In one sense, there was a disagreement between my friend and his urologist over probabilities and outcomes, the values and utilities associated with a particular medical procedure. But in another more profound sense, my friend and his urologist were living on different sides of a historical transformation. My friend was resisting further involvement in a dense web of surveillance, risk assessment, and interventions that had been triggered by a routine blood test within a routine exam — none of which would have happened a half century ago. He was trying to take a few steps back to the time in which medical encounters were primarily the management of felt bodily experience and physical signs rather than highly probabilistic risk knowledge and states that increasingly are produced by medically directed surveillance and probing.
But to his urologist, my friend suffered from a real disease, "early" prostate cancer, and to abandon active surveillance was equivalent to giving up on the possibility of cure — thus his reference to palliation. This conflict is typically understood in a piecemeal way, as a set of individual medical problems that will be ameliorated by more and better evidence, or by system-wide reforms to decrease the biases and incentives that lead to costly, ineffective care. But we miss an opportunity to both better understand and respond when we ignore the underlying historical conditions that have transformed diseases and diagnoses, medical work, and patienthood. The chapters that follow explore the reasons for and the nature and consequences of these transformations.
In tracing these transformations, I aim to contribute to the history and sociology of medicine, in particular the study of disease and the disease experience, as well as to our thinking about policy choices. Part 1 of the book (this introductory chapter and the next two chapters) includes wide-angle essays on the converged experience of risk and disease and the efficacy of risk interventions. Part 2 (chapters 4–8) contains focused case studies of the history and sociology of particular risk research programs and interventions and risk experiences. Part 3 (chapters 9 and 10) draws some clinical and policy implications of the historical transformations that constitute risky medicine.
I explore in chapter 5, for example, the details and implications of the new HPV vaccines' co-construction as vaccines against cancer and as proprietary drugs that promise to reduce and control individual risk. This dual identity explains these vaccines' architecture, perceived efficacy, cost, and marketing. HPV infection has been constructed as a risk state or experience. The vaccines promise not only to prevent cervical cancer and other disease outcomes, but this state or experience of HPV risk. The HPV vaccines' differences from traditional vaccines may be difficult to appreciate because researchers, public health officials, drug manufacturers, and clinicians have blurred the border between risk and disease and have appropriated older rationales and the language of traditional clinical interventions and public health for new ends.
In chapter 6, I explore the history of the two vaccines against Lyme disease (LD) that were developed and tested in the 1990s. Despite premarketing evidence of their safety and efficacy, one was withdrawn prior to regulatory review and the other after only three years on the market. The history of these vaccines illuminates the challenges faced by many new risk-reducing products and practices and underscores the importance of their social and psychological, as distinct from biomedical or scientific, efficacy in their initial promise and later failure.
Then, in chapter 7, I explore the rapid growth and changing meaning of cancer survivorship, one of the most prominent examples of the converged experience of risk and disease. Long-term survivorhood is no longer a period of receding worry after cancer diagnosis and treatment. Knowledge of risks emanating from the natural history of cancer and previous cancer interventions has led to many new types of often intense surveillance and intervention. There have been some problematic consequences of this transformation. As many more people become cancer survivors due to expansion of the diagnosis and creation of new precancerous and at-risk conditions, people with rapidly growing and difficult-to-treat cancer have less societal visibility. They represent a much smaller fraction of the total number of people labeled as having cancer. Some interventions "work" not so much to improve a survivor's life chances as to restore control and certainty to the risk-dominated survival experience.
Overall, the book focuses on aspects of risk that are controversial and contribute to dilemmas in policy maker, physician, patient, and consumer decision making, and in which some gap exists between medical and consumer appeal and existing scientific evidence. But this focus on the downsides of risk-centered disease prevention and chronic disease management courts a very real danger — throwing out effective preventive or disease-modifying intervention, i.e., the baby, with problematic risk intervention bathwater. Despite this danger, I spend little time discussing the upsides of medical prevention and risk intervention. This is partly because I do not want to clutter the narrative with repeated observations that some primary and secondary prevention is effective, which is of course true, when calling attention to it serves only to provide rhetorical balance. But I also believe that the commonsense appeal of prevention, along with many vested interests and problematic values I explore in these chapters, has contributed to our inertia in grappling with and recognizing the implications of the changes I describe. Some of the concerns I raise are readily dismissed as the necessary, if unfortunate, cost of doing the business of effective disease prevention. I worry that the constant and automatic fealty to the self-evident benefits of disease prevention has rationalized many interventions we might better have jettisoned or prevented from diffusing prior to rigorous evaluation. So the chapters that follow often dispense with the conventional nod to the obvious positive impact of some disease prevention efforts, such as our mandated childhood vaccines and taking aspirin after heart attacks.
(Continues...)
Excerpted from Risky Medicine by Robert Aronowitz. Copyright © 2015 The University of Chicago. Excerpted by permission of The University of Chicago Press.
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