1980s, it is useful to trace how this epidemiological event unfurled in the United States, looking at the relationship of state systems of public health with the national CDC, while acknowledging tensions not just between the public good and an individual’s health, but also between an individual’s health and corporate interests.
TSS: Background Facts
Though the exact numbers do not tell the story of TSS, from 1970 to 1980 the CDC counted 941 confirmed cases, 928 in women, and 905 at the onset of the menstrual period. The majority of women were white, but there were also seven black women, three Asian women, three Hispanic women, and two American Indian women.3 In total, seventy-three women died during that time period. A 1983 summary in the CDC’s Morbidity and Mortality Weekly Report (MMWR) outlined 2,204 cases of TSS, of which 96 percent were women, 90 percent occurred at the onset of menses, and 99 percent were tampon users.4 A bar graph entitled “Reported Cases of Toxic-Shock Syndrome, by Date of Onset” in the same report represented the rising numbers of cases, as well as the general decline, over the ten-year period from 1970 to 1980. Though there were many reasons for the decline of TSS in the latter half of 1980, ranging from better treatment to the successful message about risk associated with tampons, the correlation of the Rely tampon recall on September 22, 1980, with waning occurrences is hard to dismiss.
Figure 2.1. This bar graph regarding TSS represents the cases reported to the CDC, with 135 cases and 13 deaths in 1979, and 725 cases and 45 deaths in 1980. The number of reported cases reflected a steep rise leading up to 1980 and a sharp decline after Rely tampons were withdrawn from the market, according to CDC data. Source: U.S. Department of Health and Human Services, “Toxic Shock Syndrome—United States, 1970–1980,” Morbidity and Mortality Weekly Report 30.3 (January 30, 1981): 25–36.
Many have argued that thousands more were sickened but were not ill enough to have all the symptoms meeting the strict criteria of TSS (as defined in the introduction). Even those who likely died as a result of the toxin produced by Staphylococcus aureus did not always present all the symptoms associated with the clinical definition. There is not a mechanism to count these cases that fell outside what was reported to the CDC, and cases were collected with a “passive” system in which health providers contacted the CDC and not the other way around, so the numbers are presumably low. In comparison, 3,652 individuals died from influenza in the United States in 1980, for instance, and in the third week of January 1981, there were 21,125 reported civilian cases of gonorrhea.5 By now it is clear that HIV/AIDS is endemic to every stratum of society and was not contained at that time. In relative terms, the scope of TSS was far less than other communicable diseases, yet its legacy can be found on every tampon box purchased today.
The narrative constructed about TSS was critical to its reception as an illness worth fighting. In a 1981 report by Arthur Reingold from the CDC, he noted that 99 percent of the women studied were white, and 97 percent of 1,020 cases were women in middle-class families with incomes from $15,000 to $25,000.6 These young, white women were not constructed as derelict drug users; elderly, ill veterans; or 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
