Really Caused by Tampons?,” raising the same decades-old and misleading question that researchers in the early 1980s did.82 The title indicates doubt about the role of tampons due to the assumption that they are inert. If, as Langdon Winner argues, artifacts have politics, and if, as Bruno Latour and Jane Bennett suggest, things exert agency, then it is high time to recognize the social and political meanings of menstrual hygiene technologies as well as the multiple outcomes related to their technological use. Because tampon technology has historically been disparaged, is hidden from sight, is worn internally within the body, and is primarily used by women, this changes the scope of injury compared to a faulty automobile airbag or a dresser drawer that tips over onto a person. No contemporary woman in the United States has benefited from unearned privileges derived from purposely or accidentally exposing menstrual fluid for others to see. Tampons powerfully conceal a disparaged bodily fluid, and thus the social disregard for menstruation casts a shadow on related illnesses such as TSS. Because of these social roadblocks, the imagination must be stretched to consider bacterium that reside on bodies and in vaginal spaces as technological users of tampons, even though they were not the primary target audience. By examining TSS as the result of a biocatalytic technology, we can gain a better understanding of how we need to think very carefully and deeply about technologies for biological use, not just for humans but for nonhumans as well.
2
Mystery
People get sick all the time. It is easy enough to minimize symptoms such as fever, chills, or sweats. Imagine then, that a person’s fever keeps rising, diarrhea and vomiting are unremittent, and fatigue and muscle weakness make it a Herculean effort to get out of bed. Deciding to seek professional, allopathic medical help carries an economic cost in the United States, so the decision to stay home and wait for the symptoms to subside is not unusual. In the late 1970s when a woman possessing these symptoms finally decided it was time to see her doctor, or a family member insisted she needed more immediate care at an emergency room, she would likely get an IV drip to replenish fluids and electrolytes, with further orders to rest at home. The sudden illness might take a turn for the worse, with her getting rushed into acute care and then suffering the onset of kidney failure. Still no one knew what was wrong. This all seemed very unusual for a healthy, young person, and it was likely that the attending physician would diagnose a severe viral infection.
Toxic shock syndrome (TSS) became this mystery illness in the late 1970s. What made it unique was that it challenged traditional forms of knowledge production about sickness. A direct causal model was insufficient to identify TSS. A paradigmatic shift to include a medical device as a cofactor was necessary for scientists and researchers to effectively associate tampons with TSS. Without a biocatalytic model as part of the usual scope of medical inquiry, recognizing this alternative pathway was not obvious. The politics of whether or not this should be “obvious” falls within the context of long-standing and systematic practices dismissing women’s reproductive health. However, with numbers on the rise, the life-and-death emergency-room cases could not so easily be ignored because the sufferers were mostly white teenagers and young mothers. This unknown malady needed to be framed in new ways, recognizing tampon technology in the illness process and challenging the long-held view that tampons were inert. It also required public health officials to argue for an unusual etiology, and one that manufacturers of tampons initially disputed.
This chapter examines how TSS gained traction as an illness and also how medical practitioners and epidemiologists further associated it with superabsorbent tampons. Within the milieu of the time period, it was neither intuitive nor “common sense” and took a good deal of research, contested at multiple levels, to conclude that TSS was a real illness with the potential of becoming an epidemiological event. In addition, the Centers for Disease Control (CDC) was under a good deal of pressure after some less-than-ideal outcomes with the 1976 swine flu pandemic that never arrived, and Legionnaires’ disease, which took nearly a year to analyze and identify. It could not afford to be the agency responsible for the deaths of thousands of young, mostly white, women, so it mobilized to thwart this emerging illness before it could unleash untold damage.
As researchers pondered what this set of symptoms might indicate, some possibilities emerged as potential culprits. Christian Schrock, an infectious disease specialist writing in the Journal of the American Medical Association (JAMA) in 1980 wondered whether it was a manifestation of herpes.1 Bruce Dan, an epidemiologist at the CDC, hypothesized it may be a variant of scarlet fever.2 Though it is the job of the epidemiologist to track outbreaks, both known and unknown, positively identifying an emergent and novel illness carries implications. Though sometimes medical-device technologies carry the risk of injury, postoperative infection, or even simply wearing out, they had not been assumed to catalyze illness in healthy individuals via bacteriological toxins. The very assumption of the safety of all tampons was called into question, which held both serious financial costs for corporations and also major adjustments to daily menstrual management practices for millions of women. How to identify an unknown syndrome, and the methodology used to do so, carried political consequences for federal agencies, corporate scientists, and women users, with ramifications still resonating today. In order to understand the scope of research and the marshaling of resources to contain the TSS outbreak in the late 1970s and early 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