It’s with great sadness that I write this piece. On May 24, 2017, the world lost an amazing advocate for women’s health. Dr. Amy Reed died at her home in Yardley, Pennsylvania at age 44, after a long battle with leiomyosarcoma of the uterus.
It’s with great sadness that I write this piece. On May 24, 2017, the world lost an amazing advocate for women’s health. Dr. Amy Reed died at her home in Yardley, Pennsylvania at age 44, after a long battle with leiomyosarcoma of the uterus. In remembering Dr. Amy Reed and her work, it’s apparent that her drive to see the surgical procedure that spread her cancer banned was stronger than any challenge she faced, and resulted in significant improvements in safe treatment for women. We owe her our gratitude and we honor her memory.
In 2013, at age 40, Dr. Reed had surgery to remove her uterus due to fibroids. The procedure involved the use of a power morcellator. The device, a minimally-invasive laparoscopic tool, was very popular among surgeons for removing fibroids and also performing hysterectomies. As Alison Montuk of MaisonNeuve, wrote in a 2015 piece on Dr. Reed:
“Morcellators are particularly handy for removing fibroids, those benign growths embedded in the uterine wall, as the growths can be as hard as coconuts and sometimes as large. While an ordinary uterus can usually be slipped out whole through the vagina, a fibroid-studded one often cannot. With the help of morcellators, though, doctors can remove the entire organ through holes the size of quarters.”
However, power morcellation is also a dangerous procedure if one has an undiagnosed uterine cancer. Dr. Reed’s tissue was examined after her morcellation procedure, at which time she was diagnosed with leiomyosarcoma, an aggressive cancer. Worse news followed. Dr. Reed and her husband, Dr. Hooman Noorchashm (pronounced NOOR-chash) were told that Dr. Reed’s procedure involved morcellation. They were unaware of that fact prior to Dr. Reed’s cancer diagnosis.
As happens with power morcellators in the presence of a hidden cancer, the instrument spread the aggressive cancer cells throughout Dr. Reed’s abdominal cavity. Her cancer was diagnosed as advanced Stage 4, the most serious level.
Both Drs. Reed and Noorchashm knew that cutting into cancerous tissues could result in the spreading of the cancer. Dr. Noorchashm, a cardio-thoracic surgeon, was trained to cut around cancerous masses, if at all possible, for this very reason.
Despite undergoing aggressive treatment for her cancer, Dr. Reed experienced several recurrences of her disease. Some were in her abdomen, while others were in her spine and lungs. The immunotherapy, chemotherapy, radiation, and experimental treatments were not helping. What could easily have become a pity party, instead turned into a concerted effort to have power morcellators removed from the market. Facing her own mortality, Dr. Amy Reed became a champion for women’s health. She was joined by Dr. Noorchashm in a journey that would change the face of medicine.
Not everyone was onboard with the couple’s advocacy work, however. The gynecology profession took the hardline stance that the benefit of the minimally-invasive morcellation procedure was greater than the risk of leiomyosarcoma, a cancer the experts deemed rare.
In addition, Dr. Noorchashm’s former employer, Brigham and Women’s Hospital, decided that the two were apparently a security risk when Dr. Reed had to return for another procedure. Hospital administration had assigned a security guard as an escort during the duration of their stay and empowered the guard to go so far as to inspect the couple’s bags.
After Dr. Noorchashm contacted an attorney, a judge issued a restraining order against Brigham and Women’s, effectively putting a stop to the security escorts and bag inspections.
Even the FDA chose to turn a blind eye to Drs. Reed and Noorchashm’s advocacy work… at first.
Until the couple took their story to the media, the FDA had never received a report of morcellators spreading uterine cancer. However, once their story became known, the floodgates were open and the FDA got reports. That, plus the doctors’ tireless efforts, got the Agency’s attention. It started looking at the issue of power morcellation and the spread of cancer more seriously.
Previously, it was thought that the number of women suffering fibroids with an undiagnosed cancer was anywhere from 1 in 500 to 1 in 10,000 depending on which study one happened to read. In April 2014, that changed. The FDA issued a statement saying roughly 1 in 350 women with fibroids also had these dangerous hidden cancers; tumors that are very hard to find without surgery. Shortly after this announcement, Johnson & Johnson, one of the big names in morcellator manufacturing, voluntarily took its morcellators off the market.
Fast forward seven months to November 2014 to find the FDA issuing a recommendation against using morcellators in the majority of women undergoing fibroid removal procedures. The Agency said such use, where there are hidden cancers, “may spread cancer and decrease the long-term survival of patients.” This was issued as a “safety communication” as opposed to a new regulation.
In September 2016, the FDA recognized that there was a problem with the system being used to report cases of morcellator-spread cancers. By that time, the Agency had received 285 such reports. The problem, it seemed, was the fact that all reports from doctors were voluntary and many doctors do not report problems. The Government Accountability Office agreed with the FDA in a report it issued in February 2017.
Several insurance companies no longer cover the morcellation procedure and, though it is still performed today, use of the device has declined.
Even though the fight to remove this device from the market is not yet over, Drs. Reed and Noorchashm’s efforts have made a world of difference. For that, we owe them both our thanks.
Dr. Reed is survived by her husband and her parents, as well daughters Nadia & Ava, sons Joseph, Joshua, Luke & Ryan, and seven siblings: Matthew Reed, Justin Reed, Alison Perate, Andrea Kealy, Sarah Trainer, Amber Trainer, and Daniel Trainer.
We will miss you, Amy, but you will never be forgotten!