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      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.