Longtime readers of re:Cycling are probably familiar with the story of Amy Rae Elifritz, who died from tampon-induced Toxic Shock Syndrome (TSS) in 2010, and became the namesake of ARE in You ARE Loved, the educational foundation started by her mother, Lisa Elifritz. This summer marks the second anniversary of Amy’s death, and the Elifritz family is suing the hospital where she was treated for medical malpractice, and the makers of Playtex tampons for negligence and liability.

Details of the suit are not available due to Indiana’s malpractice laws, but the two-part investigative report about TSS conducted last year by Indianapolis television station WISH-TV8 is available here (part 1) and here (part 2). Phillip Tierno, the microbiologist who first identified the connection between synthetic fibres in tampons and TSS more than 30 years ago, is among those interviewed.

The findings of the WISH-TV8 investigative team, led by reporter Karen Hensel, inspired Rep. Carolyn B. Moloney (D-NY) to introduce the Robin Danielson Act to Congress for a fourth time, on June 23, 2011. Moloney first introduced a similar bill, called the Tampon Safety and Research Act, in 1997. The bill would have required independent research on tampon safety, under the auspices of the NIH, to determine whether dioxins, synthetic fibres, and other additives are present in femcare products and to assess their health risks. The bill was introduced in 1997 and in 1999, but never got out of subcommittee. In 2001, it was renamed “The Robin Danielson Act”, after a woman who died of tampon-related TSS in 1998, in hopes that removing the word “tampon” from the title might speed its progress. The bill was introduced again in early 2003 and quickly moved to the House Subcommittee on Health, where it slowly died. The 2011 edition has so far acquired three co-sponsors and been referred to the House Subcommittee on Health, where it currently rests.

The Danielson act would also authorize and compel the Centers for Disease Control (CDC) to develop a “program to collect, analyze, and make available data on toxic shock syndrome, including data on the causes of such syndrome”. Making a compelling case for the bill is complicated by the fact that there are presently no national data on cases of TSS in the U.S. TSS is a nationally notifiable disease that states must report to the CDC, but reporting by the states is voluntary. Amy Rae Elifritz’s home state of Indiana did not begin collecting data on TSS until 2009.

I don’t know the Elifritz family, but my heart hurts for the loss of their daughter. It hurts for them even more when I read the online comments about the lawsuit and the WISH-TV8 investigation that accuse them of “greed” for suing and Amy of “stupidity” for not reading or not following the warnings on the tampon box. Aside from the insensitivity and cruelty of saying such things to a grieving mother, they’re just not true. Amy’s mother is certain that she did read and heed the instructions on the box, but that’s not enough.

It remains controversial whether it is how long one wears a tampon or the fibre content of the tampon itself that is correlated with the growth of bacterial toxins in the bloodstream. The preponderance of evidence would suggest that it’s more likely about the fibres, especially since the manufacturers have the confidence to have withdrawn the warnings not to leave tampons in overnight from the required package inserts several years ago. (Those package inserts were required by court order, by the way, nine years after 38 women died from a tampon-related illness, because the industry refused to implement voluntary standards.)

Accusing the Elifritz family of greed is even worse. Lisa Elifritz started the non-profit foundation, You ARE Loved, for the sole purposes of raising awareness of tampon-related TSS and providing factual information about menstruation. Dedicating your life to preventing the cause of your daughter’s untimely death is just about the least greedy thing a person can do. And I’m pretty sure it’s not very profitable.

The “greedy” remark was about filing medical malpractice and corporate negligence lawsuits, of course, not about starting an educational foundation. But these suits are likely to drag out over a period of years, and require the Elifritz family to relive every agonizing moment of Amy’s last days in painful, public bas-relief. There are easier ways to make money. I have to believe this is about justice — making it impossible for a team of emergency room doctors to be unable to recognize signs and symptoms of TSS. Impossible for FDA regulators and tampon manufacturers to be so cavalier about women’s health. And impossible for girls and women not to know that the femcare industry isn’t looking out for them — they’ve got to look out for themselves.