Toxic Shock. Sharra L. Vostral
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irresponsible, gay men. They were future mothers and wives. No doubt the invisible hand of white privilege played a dominant role in constructing them as people worth saving. Additionally, an old trope of paternalism to rescue young women is evident as well. This is not to dismiss the good intentions of the researchers and agencies, or their ability to fulfill the mission of protecting public health. But, as a social practice, disease narratives carry meaning and consequences, and TSS initially benefited from its association with white women. However, TSS also suffered the stigma of being related to the disparaged female-specific bodily process of menstruation and the stigmatized tampon used to contain menstrual flow.
Identifying Illness
Recognizing, naming, and then treating a new disease is no small feat, and there should be a high bar for collectively agreeing that a set of symptoms and biological markers amount to an illness with social meaning. Recognizing the biological sense of disease is one thing, but socially responding to it is quite another. According to Charles Rosenberg, a historian of medicine, “it is fair to say that in our culture a disease does not exist as a social phenomenon until we agree that it does—until it is named.”7 Rosenberg identifies five major areas when “framing” a disease: (1) cognitive and disciplinary elements; (2) institutional and policy responses; (3) adjustments that individuals and families undertake; (4) relationships between doctors and patients; and (5) societal attitudes, values, and their rationalizations associated with the disease. In the case of TSS, these elements that frame disease are also at play. Medical experts identify a phenomenon of illness and name it; state and national health institutions weigh in to alert women; doctors, nurses, and healthcare providers must be educated to recognize symptoms; broader society reacts to the illness; patients incorporate the experience of illness into their personal identities. However, the unique elements in the framing of tampon-related TSS are both its association with technology and the biocatalytic quality of superabsorbent tampons. That is to say, the relationship of TSS to tampons muddied more traditional ways of identifying disease, raising difficult questions about causation, correlation, and association of technology with illness. It did not fit a typical pattern.
Furthermore, it is a bit inaccurate to call TSS a disease. It is neither communicable like the flu nor degenerative like arthritis. According to James Todd, the pediatrician who coined the name, a syndrome more accurately describes this illness. As he explained it, “A syndrome is a group of signs and symptoms and laboratory findings which seem to occur together and describe a single disease entity. But as it exists only that far, that is a syndrome.” The illness moves to the category of disease when researchers “know the cause of those signs and symptoms” with laboratory findings to corroborate the diagnosis. When clinicians “can prove this cause,” he affirmed, “then that’s a disease.”8 This distinction of a syndrome is quite important, because it is a way to acknowledge the unknown elements while still recognizing and legitimizing an illness with its associative social components.
Agreeing on the elements of an illness is one thing, but the social system to keep tabs on it, as well as to determine its threat to large segments of the population, is a different set of skills addressed by epidemiology. According to Mark Pendergrast, an independent scholar, “epidemiology is a science of probability, not proof.”9 This succinct description captures the inherent tensions about methods used by Epidemic Intelligence Service (EIS) officers at the CDC in determining normal disease patterns or novel, unusual, or increased incidents of illness. The goals of epidemiologists are different from basic research scientists. The outcomes of halting an outbreak or stemming the spread of a disease call on different methods and reliance on correlation, and optimally direct proof, as basis for policy.
In many ways, the identification of TSS followed similar patterns characteristic of other epidemics. Mark Dworkin, an epidemiologist by training, outlines fourteen steps of an outbreak investigation, though they may overlap or happen in a different order. The first step is to verify an outbreak by examining what is referred to as surveillance data. This, of course, assumes known infections rather than those illnesses of unknown origins. After analyzing the data, a diagnosis must be confirmed, which again relies on known tests and lab practices. Beyond this, more severe outbreaks require an investigative team with a leader to delegate tasks and set agendas for more complex situations, and even create a case definition. The team counts cases and conducts “epidemiologic analysis,” such as identifying variables, demographics, and patterns, for instance. This allows the team to develop a hypothesis about what may be going on and then determine control measures. Depending on the nature of the outbreak, more studies may be necessary, followed by analysis and additional control measures of individuals, treatments, or follow-up regimes. Epidemiologists use the language of “compliance” to describe how infected individuals, patients, or publics follow and conform to the recommended protocol. The last steps include communicating about the findings, establishing measures to prevent future outbreaks, and collecting surveillance data about the disease progression and its hopeful reduction through the outlined interventions.10 Though this provides a distinct process of how ideal organizational operations would unfold within the CDC or a state department of health when confronted with an outbreak, a theoretical epidemic does not always account for real-life unknowns, the messy work of detection, and its relationship to the social world.
Epidemiology is part science and part social detective work, and it is this component that is problematic to other fields of science, and under scrutiny in light of evidence-based medicine. Epidemiologists must gather pieces of evidence, which become factors, and judge whether or not correlation is significant to causation. Researchers readily rely on inklings, hunches, and past experiences, and they depend on both creative problem solving and stringent methods to identify known and unknown outbreaks. However effective this approach may be, its weakness lies in its inability to eliminate sufficient variables, or even provide significant proof. Lack of an occurrence can constitute evidence, which also becomes questionable methodologically in other scientific settings. Epidemiology is also reactive and thus does not have the luxury of long-term clinical studies to lean on for legitimacy.11
This is important because at issue is whether or not the recommendations set forth by the CDC should be believed. Steven Epstein, a sociologist of health and medicine, discusses how trustworthiness is at stake with methods and procedures, and he suggests “knowledge emerges out of credibility struggles.”12 Scientists’ claims must be believable in order to elicit support, shape arguments, and garner recognition. Yet the very thing that propels some of these research aims is characterized by differences in fastidious science and pragmatic science, as pointed out by Epstein, and defined by Alvan Feinstein, an authority on clinical trials at the Yale University School of Medicine.13 Fastidious science relies on “clean” data and “elegant” research designs, and it is likely carried out by academically trained researchers, promoting an ideology of purity leading to truth. This method seeks ways to reduce ambiguity and bias, and produce clear findings. By contrast, the pragmatic approach accepts messiness, ordinary variables in field and clinical settings, as well as occasionally ambiguous results. These differences are linked to power struggles between science-based academic researchers and clinic-based physicians, but the tensions are inherent to epidemiology as well. Epidemiology embodies this conflict, with both its need for scientific rigor and also its requirement to act quickly on behalf of the public good, in the messy theater of human life, when there is no time to wait for “clean” results from a well-designed study. It is here where politics and health collide.
New Diseases, New Difficulties
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