Philly patient-safety advocate, physician Amy Reed, dies at 44

"Doctors putting people in harm’s way. That made her angry,” said a colleague in tribute.

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Hooman Noorchashm posted this photo of Amy and her six children on Facebook on May 14 to mark Mother's Day.

Amy Reed, the Philadelphia physician who used her own tragic case to expose the cancer-spreading hazards of a surgical device, died of a rare form of uterine cancer on Wednesday night at her home in Yardley,  surrounded by her husband, children, and other family members.

Dr. Reed, 44, an anesthesiologist, sought aggressive conventional and experimental treatment over the past 42 months, hoping for more time with her six children, ages 4 to 15.

Her husband, Hooman Noorchashm, a cardiothoracic surgeon whom she met 22 years ago when they were graduate students at Penn, shared the news of her death.

“She is a mother, a doctor, and a warrior the likes of whom the world does not often see,” Noorchashm  wrote in a recent email to physicians involved in her care.

Noorchashm spearheaded the couple’s campaign to outlaw the surgical device, called an electric morcellator that was used in her 2013 hysterectomy in Boston. Its motorized blades enable gynecologists to dissect and remove the uterus through tiny abdominal cuts rather than one big incision. But the process can spew fragments of an undiagnosed leiomyosarcoma, a ferocious malignancy that can be mistaken for benign uterine fibroids and that preoperative tests can’t reliably detect. Spreading the cancer in this way worsens the patient’s prognosis.

Dr. Reed stepped forward as a cautionary example of this nightmare scenario after her hysterectomy in October 2013 at Brigham and Women’s Hospital, which is part of the Harvard health system in Boston, where both she and her husband then worked.

The couple’s campaign — waged through social media, traditional media, and Noorchashm’s no-holds-barred emails to regulators, gynecology leaders, manufacturers, and politicians  — has moved mountains. Most hospitals, insurers, and even the leading manufacturer have abandoned the device. The U.S. Food and Drug Administration now warns against morcellation in almost all cases and estimates the chance of spreading an undetected malignancy  at 1 in 350. In February, a government watchdog agency  faulted the FDA for being blasé about the danger for two-plus decades – until Dr. Reed became the symbol of it.

Dr. Reed has 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,” Dr. Reed told the Inquirer early last year during an interview at their home in Yardley. “That’s a philosophy Hooman and I share.”

Michael Paasche-Orlow, who went to medical school at Penn with Dr. Reed's husband, reviewed the scientific literature after her cancer diagnosis. His data led to the FDA’s 1 in 350 risk estimate – and debunked the 1 in 10,000 that gynecologists formerly guessed.

Amy “has always been a forthright person — very strong, very clear about what’s right and wrong,” said Paasche-Orlow, now at Boston University. “Doctors putting people in harm’s way. That made her angry.”

Dr. Reed grew up in Bucks County in a boisterous, high-achieving clan that grew even bigger when her parents’ divorced and each remarried.

Although she had a rebellious, black-lipped “goth” period as a teen, she was valedictorian of her Catholic high school, Villa Joseph Marie, in Southampton. She graduated Phi Beta Kappa from Pennsylvania State University.

In 1996 — her first year as an immunology graduate student at Penn — a friend introduced her to Noorchashm. He was born in the U.S. while his parents were Penn grad students, but spent his childhood in Iran amid the revolution and Iran-Iraq war. His family fled and resettled in Upper Darby when he 14.

“When Amy and I met, I just absolutely adored her,” Noorchashm told the Inquirer.

While she took time to warm to her ambitious, intense suitor, she told her roommate: “He kind of drives me nuts, he’s so persistent. But watch. I’ll probably wind up marrying him.”

Their 2001 wedding was bookended by hard-earned successes and joys: two doctorates in immunology, two medical degrees, and babies. Keen to have a big family, they 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 Dr. 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.” 

Dr. Reed, in turn, relied on a strong support network — particularly her mother, grandmother, and three younger sisters, who also had young children. With babysitting and carpooling help, and a high tolerance for sleep deprivation, Dr. Reed found time for bursts of creativity, like her self-published book, Naughty Children, inspired by her brood’s gleeful Halloweens.

“For as long as I can remember, Amy has been smart, imaginative, creative, and kind,” said Andrea Kealy, her sister and Yardley neighbor.

When Noorchashm got a prestigious cardiothoracic 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 both in surgery and the intensive care unit.

Daniel Talmar, the center’s chair of anesthesiology, recalled Dr. 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 their sixth child, Dr. Reed and her husband became  worried about her heavy, persistent, abnormal uterine bleeding. Noorchasm, newly appointed to Harvard’s faculty, was in Durham, N.C., for a six-month lung-transplant training program. He got his wife a consultation with a top Harvard gynecological cancer specialist, who concluded she had fibroids — benign growths that are the most common reason for hysterectomies. The specialist recommended a minimally-invasive hysterectomy instead of the traditional open-belly procedure to reduce her recovery time.

Only after her cancer diagnosis did Dr. Reed and her husband learn that fibroids can’t be reliably distinguished from leiomyosarcoma, and that her surgery involved a morcellator.

Their priorities, ambitions, and trust in their own profession were forever changed.

“Hooman called me and said, ‘What do you know about morcellators?’” recalled Paasche-Orlow. “I’m a general internist, but I had never heard that word. I didn’t know there was such a device. He said, ‘I think they just spread cancer in my wife with it.’”

In 2014, Dr. 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.’”

Hundreds of other affected women or their survivors have contacted the couple. Dr. Reed told the Inquirer that three women had written to her to say they refused power morcellation after reading about her; they turned out to have sarcomas that were removed intact.

“We’re not at all glad that this happened to us, but lives have been saved as a result,” she said last year.

Noorchashm echoed that sentiment in an April 14 blog post for Philly.com. “Very certainly, Amy’s suffering — and how she chose to fight despite her own pain — have saved many women’s lives and shifted the contour of practice and ethics in women’s health.”

Even as her cancer progressed, Dr. 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 former Congressman Mike Fitzpatrick (R-Pa.) became a key ally.

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

In addition to her husband, Dr. 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 underway.