Teen’s Death From Toxic Shock Syndrome Raises Symptom Awareness — But We Should Be Talking About Tampon Regulation

When 13-year-old Jemma-Louise Roberts first started feeling sick, her parents did everything they were supposed to do. They brought her to the doctor immediately, despite being on a family vacation, but she was misdiagnosed with a flu virus and sent home. When her condition worsened and they took her to the hospital, she was diagnosed with Toxic Shock Syndrome, or TSS, a bacterial infection that was so severe, she died a week later from sepsis.

Now months later, Jemma’s mother Diane is speaking out in honor of World Sepsis Week, in order to raise awareness about TSS. As important as it is for girls like Jemma and their parents to be aware of the symptoms of TSS, the more troubling issue is the regulation of tampons. There’s even less awareness about this and the dark past of the disposable menstrual products that have contributed to the deaths of many young women. Addressing TSS and sepsis are important, but they are also symptoms of this larger problem.

The first study of TSS in 1978 had nothing to do with tampons, but children who had died from the bacteria infection. This set the stage for the controversial Rely brand tampons to hit the market that same year after being “grandfathered” in by the FDA. What this meant was that because Rely underwent market testing in 1974, two years prior to regulations changing, the tampons were not subjected to the same testing standards.

This terrifying tampon had many extreme features that were celebrated for convenience when they should’ve been cause for concern. Rely tampons were was designed to meet the demand of women who wanted a product that could absorb your entire menstrual flow without leaking or being removed. This super-tampon could absorb up to 20-times it’s own weight. And that was a selling point.

The subsequent increase of TSS was so significant the Centers For Disease Control stepped in. In 1980, they found that of 890 TSS cases reported, 91 percent of them were related to menstruation, and tampon use was finally linked to this fatal infection. Rely tampons were recalled, but plenty of other existing brands have also been linked to TSS.

The outbreak of the 1980s did get the FDA speculating about the connection between super absorbency tampons and their chemical composition. Further research in 1989 found a link between synthetic materials and TSS, but other studies remain pretty inconclusive as to what exactly is in tampons that might cause TSS.

What happened next in the 1990s is best outlined by Karen Houppert’s 1995 exposé from The Village Voice. As the TSS scare of the ’80s died down, the FDA began to ease off regulations and put the manufacturers in charge of their own research. In 1992, a Congressional Subcommittee came across memos indicating traces of dioxin in tampons, a potentially carcinogenic chemical that can cause birth defects and be toxic to the immune system. While the memo indicated that the risk for dioxin in tampons can be high, the FDA did not test them.

Now the FDA requires manufacturers to submit dioxin tests of tampons as well as other chemical and absorbency tests, but the same oversight issue remains. This places the responsibility of regulation in the hands of the companies that profit from people not knowing the real risks, instead of a neutral party. This puts anyone wearing a tampon at risk, even if you read the box and exercise caution, because these recommendations are mostly based on bad things that have already happened rather than preventative research. With the current standard, there’s no real way of knowing if these warnings are accurate or enough.

Many people assume that TSS is no longer a problem because incidences of it are rare. In the U.S., at most, 17 in every 100,000 menstruating women are effected by it each year (other resources round this figure down to one), but it can be life threatening in up to 50 percent of cases. Just because it’s rare doesn’t mean it’s not a problem, especially since it keeps happening. One TSS survivor sued Kotex this year over the loss of her leg because of it. Interestingly, her product of choice was Kotex Natural Balance, a brand with supposedly safer chemical implications.

After all this time, the short and longterm risks of tampon exposure still have yet to be conclusively studied and that should scare the shit out of all of us. Luckily there are lawmakers like Congresswoman Carolyn B. Maloney (D-NY) fighting the good fight. She introduced the Robin Danielson Act to Congress, which calls more research regarding the safety of menstrual products.

Out of respect for Jemma and all the other young women who’ve died from TSS, we need to also raise awareness about the lack of oversight and regulation that puts us all in danger. Contact your Congressperson about the act, and most importantly, keep talking about it. It might be an old problem, but it’s one that we’ve failed to fully solve in more than three decades. At the very least, we shouldn’t be walking around like it’s no longer something to be concerned about.