I’ve never met Lorraine Rothman, a women’s health activist and inventor of the Del’Em menstrual extraction kit. But I came to know her work through my dissertation research, and so I was deeply saddened to hear that she is dying.

Rothman was an early leader of the self-help health movement, a phenomenon of early 1970s women’s liberation that involved groups of women using a speculum to look at each other’s cervixes. Think of it as a physical complement to consciousness-raising, a way for women to gain knowledge and authority about their own bodies. Instead of relying on a gynecologist (usually male, at that time) to tell us about the health or sickness of our bodies, women would be able to help each other know their bodies from the inside out, literally.

In 1971, Lorraine Rothman and Carol Downer traveled around the country with a slide presentation and bags of speculum to teach women about the art of what they called “self-help,” sparking the creation of “self-help clinics” as they went. Rothman then invented the Del’Em (basically a soft plastic tube and vacuum jar), which self-help groups could learn to use to remove the contents of the uterus on the day menstruation began or was expected. This process of “menstrual extraction” was touted as a way to liberate women from the inconveniences of menstruation. It could also be used as a method of very early abortion. This procedure offered another way for women to use technology to take an active, cooperative role in the workings of their own bodies.

Though self-help and menstrual extraction is all but forgotten, Rothman was a key figure in the development of feminist health care, co-founding several feminist women’s health centers. It is sad and ironic, then, that she is now fatally ill because of the failure of her own health care. She is dying of advanced, metastasized bladder cancer, which was not detected by the doctors she saw through her HMO over the past two years of her pelvic pain. She did not see a urologist, because her HMO did not offer the option of seeing a female doctor. A physician’s assistant at a women’s health center finally detected that she had a serious problem, but while Rothman waited for an appointment with a uro-gynecologist through her HMO, her pain became unbearable and a visit to the emergency room diagnosed her advanced cancer. She is now in hospice care.

Her story proves that we still have a long way to go to create a health care system that is responsive and accessible to all patients, providing services that meet their needs and earn their trust. With feminist health care centers like those Rothman helped create now on the wane, many women like her (and others, such as transfolk) with reason to distrust the medical establishment, are falling through the gaping health care cracks. Rothman may have been utopian in thinking that viewing the cervix with a group of women friends could change the world, but we would do well to ask ourselves: where is empowerment and self-determination in health care today?