Philly patient-safety activist lauded for courage, commitment

Amy Reed and Hooman Noorchashm with former Pa. Rep. Mike Fitzpatrick, introducing The Medical Device Guardians Act on June 8, 2016.

Amy Reed did all she could to beat her rare uterine cancer, just as she worked tirelessly for a ban on the surgical device that spread the malignancy inside her.

At the same time, Reed, 44, a Philadelphia anesthesiologist, was a planner and a realist. Before cancer ended her life Wednesday night at her home in Yardley, she wrote letters to each of her six children, to be opened at future milestones. She also compiled reminiscences from relatives and friends for her offspring, ages 4 to 15.

“She asked us to write down stories just so the kids will have pieces of her,” her sister Andrea Kealy said Wednesday afternoon. “Her biggest fear is she’ll be forgotten. Which is crazy.”

By all accounts, Reed left an indelible impact.

She and her husband, cardiac surgeon Hooman Noorchashm, were the first to report to the U.S. Food and Drug Administration that the surgical device, called a power morcellator, had disseminated her undetected uterine cancer, a ferocious malignancy called leiomyosarcoma. Their campaign for a ban led hundreds of women or their survivors to come forward, claiming to be unwitting victims of the same horrific scenario.

Rep. Louise Slaughter (D., N.Y.) said in a statement Thursday that Reed “was an extraordinary doctor, wife, and mother who became one of the fiercest advocates for patients nationwide [and] gave a voice to so many people whose lives were devastated by these dangerous devices.”

Michael Paasche-Orlow, who went to medical school with Reed’s husband, reviewed the scientific literature after her cancer diagnosis. He presented data that helped the FDA to calculate the risk of spreading an undetected leiomyosarcoma at 1 in every 350 women who had morcellation – not the 1 in 10,000 that gynecologists had guessed.

“It’s just crazy that with 20 years of people being harmed, nobody is reporting it to the FDA,” said Paasche-Orlow, now at Boston University. “Decades of people dying sooner than they needed to.”

Reed and her husband, who met 22 years ago when they were graduate students at Penn, had never heard of morcellators when abnormal menstrual bleeding attributed to benign fibroids led to her 2013 hysterectomy at Brigham and Women’s Hospital in Boston, where both then worked.

As was common practice then, doctors didn’t tell her that a morcellator would be used, just that the operation would be “minimally invasive” to shorten her recovery time. Nor did they tell her that no preoperative test could reliably tell if her fibroids were malignant.  The device enabled her gynecologist to dissect and remove the uterus through tiny abdominal incisions, rather than having to cut open her belly. But it also hurled fragments of the undetected leiomyosarcoma around her abdominal cavity.

Because of the couple’s crusade, most hospitals, insurers, and even the leading manufacturer have abandoned the device. The FDA now warns against morcellation in almost all cases. In February, a government watchdog agency faulted the FDA for disregarding the danger for two-plus decades – until  Reed became the face of it.

Reed said she was initially uncomfortable being an activist, but came to feel she and her husband were uniquely equipped to challenge entrenched medical interests, given their training, savvy, and sense of duty.

“We’re not just here to enjoy life. We’re here to give back,” she told the Inquirer early last year during an interview at their home. “That’s a philosophy Hooman and I share.”

Said her medical school classmate Paasche-Orlow: “Amy has always been a forthright person — very strong, very clear about what’s right and wrong. Doctors putting people in harm’s way. That made her angry.”

Reed grew up in Bucks County in a boisterous, high-achieving clan. Despite a rebellious, black-lipped goth period as a teen, she was valedictorian of her Catholic high school, Villa Joseph Marie in Holland. She graduated Phi Beta Kappa from Pennsylvania State University.

In 1996 at Penn, a friend introduced her to Noorchashm. She would later tell her roommate that the intense, ambitious Iranian American “kind of drives me nuts, he’s so persistent. But watch. I’ll probably wind up marrying him.”

Their 2001 wedding was bookended by two doctorates in immunology, two medical degrees, and babies. They had welcomed five of their six children by the time they completed their medical residencies at Penn in 2011.

Emily Gordon, a Penn anesthesiologist who trained alongside Reed, was visibly pregnant with her first child when they met. “Under her breath, Amy told me she was pregnant, too,” Gordon recalled. “I felt such a sense of relief. Women in medicine have to stick together and be supportive. And Amy was always like that.”

When Noorchashm got a prestigious surgical fellowship at Brigham and Women’s in 2011, Reed reluctantly agreed to relocate to Boston.  She was snapped up by the anesthesiology department at Beth Israel Deaconess Medical Center, where she worked in surgery and the intensive care unit.

Daniel Talmor, Beth Israel’s chair of anesthesiology, recalled Reed’s leadership in April 2013 when the ICU treated victims of the Boston Marathon attacks — including wounded bomber Dzhokhar Tsarnaev.

“When he arrived, everyone was in an uproar, wondering whether to treat him,” Talmar said. “Amy just told everyone to calm down. She said, ‘We’re going to do what we’re trained to do.’ ”

Five months later, barely a year after the birth of her sixth child, Reed had the hysterectomy.

She and her husband said their priorities, ambitions, and trust in their own medical profession were forever changed.

In 2014, Reed and her husband moved the family to an 18th-century farmhouse in Yardley. For a while, the doctors went back to work – she at Penn and he at Thomas Jefferson University Hospital — but treating recurrences of her disease and caring for their children became all-consuming.

“It forces you to be honest,” she told the Inquirer last year. “We say to the kids, ‘We’re going to take out the cancer.’ And they say, ‘What if it comes back?’ And I say, ‘It might.’ They say, ‘Will it kill you?’ I say, “I don’t know,’ which is the truth. I say, ‘We all die. But we’re fighting to do everything we can.’”

Even as her cancer progressed, Reed and her husband expanded the anti-morcellation campaign to call attention to well-known weaknesses in the FDA’s entire medical-device regulation system. They made numerous trips to Capitol Hill, where Slaughter and former Rep. Mike Fitzpatrick (R., Pa.) became key allies. Slaughter and Fitzpatrick’s successor in Congress, his brother Brian, have been stymied in efforts to enact bills to reform the FDA review process for devices.

“Dr. Amy Reed brought her medical background, her experience, and her humanity to bear on critical medical issues,” Mike Fitzpatrick said. “She spoke up for those who couldn’t speak for themselves. She taught me so much.”

Besides her husband, Reed is survived by her children: Joseph, 15, Nadia, 14, Ava, 12, Joshua, 10, Luke, 7, and Ryan, 4. She is also survived by her parents, Joanne and Fred Trainer, and William and Joan Reed; her grandmother Ann Mills; four sisters and three brothers; and 11 nephews and nieces. Funeral arrangements are pending.