In the first weeks of 2016, four Michigan teenagers lay in hospital beds, all suffering from toxic shock syndrome (TSS): a rare and deadly, but preventable, bacterial infection. All of those teenagers are girls, all of them had been using tampons, and all of them live in western Michigan.
In the past year, we’ve written a lot about TSS, the infection caused by a strain of staph bacteria carried by 33 percent of the population. Tampons made with synthetic materials can create an ideal breeding ground for the staph to multiply and attack the body like a “D-Day invasion on Omaha Beach,” as one researcher told me last fall. For an illness that’s long been considered an epidemic of the 80s, there have been a lot of stories lately of women sent to the hospital due to the infection; in Michigan, the recent cases have even been called a “TSS outbreak.”
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Brian Hartl, an epidemiologist at Michigan’s Kent County Health Department, isn’t used to seeing any cases of TSS, let alone several in a row. “Four cases in the scope of a month—that’s definitely something we don’t see very often,” he told me. “In fact, those are the first cases of TSS reported to Kent County in quite some time.”
It’s not entirely clear why these four cases occurred in such a small geographical area. But they were enough to trigger Hartl’s department to contact the state health department, which then partnered with the CDC, and filed a report to the FDA (which has not yet been released) on the specific tampon brands being used by the girls.
One of those girls is 15-year-old Rylie Whitten, of Greenville, Michigan, who fell ill just after the new year. Her father, Nate Whitten, says Rylie complained of body aches on Sunday, January 3. “She came home from hanging out with some friends, wasn’t feeling well, took a hot bath and went to bed,” he said. She stayed home from school Monday, January 4, and didn’t show any signs of improvement the next day. That’s when her father says he and his wife called the family doctor—but without a fever or a cough, the doctor said there was no reason to come in.
On Tuesday night, Rylie took a turn for the worse. “The honest to God only reason I knew that something was wrong was she was sitting there in so much pain, she couldn’t even lay there without moaning,” Whitten said. They brought her to the emergency room, where influenza and spinal meningitis tests came back negative. Soon, though, Rylie’s body started to shut down: Her blood pressure plummeted, she had kidney failure, lung failure—”they were talking [about a] heart transplant,” Whitten said.
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Rylie was airlifted from Greenville to Helen DeVos Children’s Hospital in Grand Rapids, where she was kept on life support for the next nine days. Only then did Whitten hear doctors start talking about TSS. “I didn’t even know what TSS was until we got to DeVos,” her father said. “From that point on, they basically identified it, but they weren’t 100 percent sure.”
Toxic shock can be difficult to diagnose, since its symptoms (fever, vomiting, rashes) look similar to many other illnesses. Last year, a 13-year-old girl died from TSS after doctors misidentified her symptoms as a simple stomach bug.
Once Rylie was diagnosed, she made a miraculous recovery, with only slight damage to her vocal chords. But if researchers know that young girls like Rylie are most likely to contract TSS (the older someone is, the more likely they are to have built up antibodies to fight off an infection), then why aren’t doctors and tampon manufacturers doing more to prevent it from happening?
In 1980, the incidence of TSS was six in every 100,000 women between the ages of 19 and 44—that year, 772 women in the United States developed the illness. By 1986, the rate went down to one in every 100,000 women—the statistic that’s still touted most often today. But other studies suggest that the rate is actually higher, especially for younger girls: It could be closer to 4 in every 100,000 women, and warning labels on some tampon boxes report rates as high as 17 in every 100,000 for tampon users. Barring updated research, it’s difficult to pinpoint exactly how common TSS is today, but the recently reported cases show that it’s certainly not obsolete.
Bob Brand, a spokesman for Kimberly-Clark, which produces Kotex (the brand used by model Lauren Wasserman, who lost her leg after contracting TSS) says his company heard about Rylie Whitten’s case. “Our hearts go out to Rylie and the other young women and their families that have been dealing with this rare but very serious medical condition,” he said in a written statement.
Brand points out that tampons aren’t the cause of TSS, but “data suggests that tampon usage can increase the risk of TSS. That is why every box of tampons contains information and warnings regarding TSS along with specific directions for use that, if followed, will lessen the risk.”
Over the phone, I ask Brand if a warning is enough to make a teenage girl aware that TSS is not a thing of the past.
“We think the warnings are clear and we think the information is clear,” he said. “I think the fact that [TSS has] dropped off dramatically indicates the warnings are working.”
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But Philip Tierno—a professor of microbiology and pathology at the New York University School of Medicine—thinks the warnings aren’t enough. The Michigan TSS cases all involved young girls, who are most susceptible to TSS, especially if the tampons are made of synthetic ingredients.
In the 1980s, Tierno’s research showed a link between synthetic tampon ingredients and TSS. And though many of those ingredients aren’t used in tampons anymore, one still is: viscose rayon. With the exception of 100 percent cotton tampons, Tierno says all tampons on the market are made with viscose rayon, and are much more readily available than their all-cotton counterparts. But even the FDA calls a connection between rayon and TSS “allegations.”
“I have never, ever—in all my work with TSS—ever had a result of all cotton [tampons] resulting in toxic shock,” said Tierno, who has been researching toxic shock syndrome for over 30 years. “All current tampons made by major manufacturers are mixes of viscose rayon and cotton,” meaning most women use those, rather than the harder-to-find cotton variety.
Tierno says that one of the worst issues is that people think TSS is a thing of the past. “Toxic shock does still occur,” he said. “People are unaware that its a problem at this point. It will remain a problem unless something else happens.”
Representative Carolyn Maloney, from New York, has been pushing for safer tampons since the 1990s. She says that despite TSS’s rarity, it’s something that needs to be watched. “We have learned of several high-profile cases of TSS in the past year, and part of the reason is that the media is paying more attention to it,” she said, “and because women are paying more attention to it.”
Maloney re-introduced her Robin Danielson Feminine Hygiene Product Safety Act last March, a bill that would promote research on feminine hygiene products. She’s introduced similar legislation nine times since 1997, and each time it’s been killed in committee.
“Women’s health is often swept under the rug, not just in our policy debates in Congress, but in our national dialogue,” she said, noting that the surge of TSS cases in the 1980s was attributed to super-absorbent tampons, which were subsequently pulled off the market.
“Right now we don’t have enough evidence linking the modern cases we are seeing, but that’s why we need more research. We need to get to the bottom of it.”
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