What Are the Chances?

The couple now lives outside of Philadelphia with their six children. / Photograph by Jenniffer Capozzola

Only they hadn’t won, really. because Amy still had cancer. And instead of joining what the couple considered a crusade to save patients’ lives, their fellow doctors were pushing back against these rogues in their midst. At Brigham, Hooman’s colleagues were told not to have any contact with him. “Until then, I never believed all of that stuff about repercussions for whistleblowers,” Amy says.

“They were trying to shut me off,” Hooman says. “People were scared.” The final straw came when Amy returned to Boston for a follow-up operation to remove a new tumor. (By then the family had moved to Bucks County, to live in what Hooman calls “the triangle of love,” in the midst of Amy’s mom and two sisters.) When she and Hooman got to Brigham, they were searched. Then they were informed that a security guard would accompany Hooman while he was in the hospital. Amy was at her most vulnerable, and Brigham was doubling down. “I support my husband’s efforts,” she says today, “but I couldn’t have done it. When I found out what they were doing, I was frantic. His response was: Bring it on.” Hooman sought a restraining order against the hospital, charging retaliation for his emails. A judge agreed with him and ordered Brigham to lift the security. “It’s like a classic David and Goliath story,” Hooman says. “If they had stepped back for a moment and thought it out—did they really think I would back down?”

Hooman sees the conflict as one between medical ethics—that “do no harm” dictate—and the demands of corporate medicine as it’s practiced in America today, with analytics and cost-cutting and cramming in as many patients as you can: “What’s happened here is, an entire establishment is willing to say, ‘We’re going to take the collateral damage.’” So he’s expanded his reach. He’s convinced two Pennsylvania politicians, Congressman Mike Fitzpatrick and U.S. Senator Bob Casey Jr., to work to get Congress to change the process the FDA uses to approve medical devices, along with how manufacturers are required to report adverse events. Because of their efforts, the FBI began investigating whether hospitals and physicians who didn’t report leiomyosarcomas after morcellation violated federal law, and the Government Accountability Office is looking into the FDA approval process. Hooman compares the situation to a terrorist attack: “Say you have one woman in 350 over 20 years subject to an avoidable procedure. Their cancers get upstaged, and their lifetimes are shortened. That’s thousands of women. And the costs to the system are massive.” Amy’s hospital saved a few thousand bucks with a laparoscopic surgery, but her subsequent bills have totaled about a million dollars. “That’s why our insurance costs go up—because of this framework,” Hooman says. He sees pursuance of this grievance as his patriotic duty. “We are the system,” he says. “This goes to the heart of what government is for—to protect individual rights, property, and health. The Declaration of Independence is a human-rights document. You can’t sacrifice a minority for the sake of the majority.”

Those are powerful words. But the truth is, we make such sacrifices all the time. That’s what’s behind the current battles over how often women should get mammograms and whether men should be screened for prostate cancer. For the vast majority of women, waiting an extra year between trips to the radiologist won’t make a difference. Insurers will save a ton of money. So could consumers. The delay will matter only to those one-in-how-many women whose cancers appear and spread in the interim. Morcellators really became doomed once insurance companies began refusing to pay for fibroid operations utilizing them.

And the Affordable Care Act, which was designed to pressure everyone involved in healthcare to tamp down costs, which emphasizes data-gathering and employs analytics to establish “best practices,” is one big game of “What Are the Chances?” That doesn’t mean it’s a bad law. It just codifies and encourages what medicine has always done. Last year, the FDA approved a new cystic fibrosis drug that costs $259,000 per patient, per year. Who should get it? Who should pay for it? “First, do no harm” to whom—the patient? The economy? The population at large?

Hooman and Amy are on leave from their jobs now, staying home, striving to keep life as much like normal as they can between Amy’s operations and radiation treatments. “We have six children,” she says. “We have to decide what high school to send them to. We have sports, exams, deadlines, car payments.” Hooman keeps up the emails and phone calls. The Change.org petition he set up calling for an end to gynecological morcellation is turning up more and more women who developed sarcomas after the procedure—and has more than 90,000 signatures. He and Amy have testified before the FDA. And they’ve expanded their efforts to other suspect medical devices. They’re working with the “E-Sisters” on fighting the makers of the Essure coil, a birth-control device that has caused organ perforation, pain, and even death in some users. One woman got an Essure implant, then had laparoscopic surgery with morcellation to remove it. The morcellator spread an undetected cancer—the bad-luck equivalent of hitting the Powerball.

But Hooman is still finding plenty more targets to tilt at. And he—and Amy, when she’s able—are back where they first met, in the lab, hoping to find something, anything, that will help keep her alive.

The couple has filed a civil lawsuit in Suffolk County Superior Court against Brigham and Women’s, Michael Muto, Karen Wang, and Karl Storz, the German manufacturer of the morcellator used on Amy. In their responses to the suit, Brigham, Muto, and Wang deny any negligence and state that Reed was fully aware of the risks of her operation; at press time, Karl Storz had not yet filed a response. (Wang is no longer employed at Brigham.)

Hooman and Amy acknowledge that one reason their efforts have borne fruit is that they were attacking the system from within. “One of the advantages we have,” says Hooman, tapping on his laptop at the kitchen table, “is that we know so many people. That’s not how it happens normally. People fall through the cracks.”

Amy, rooting in a toolbox for a screwdriver to fix a loose cabinet handle, says wryly, “I fell through the biggest crack of all.” What she and her husband have been through would have crushed many couples. Instead—because of their personalities, their training, or perhaps very good counseling—they seem totally on the same page. When they discuss past disagreements, like how Amy didn’t want Hooman to go to Duke, it’s with an air of having moved past the emotion of the moment. Amy says she hopes to be able to treat her cancer as a chronic condition. She refuses, she insists, to talk or even think about the odds. And despite the ways the medical community failed her, “I still believe the system rights itself,” she says. “But maybe not if my husband hadn’t pushed so hard.”

After my visit, Hooman adds me to his email list. I’m swamped with a tsunami of his wrath, copied daily on messages of rebuke and recrimination. I read them, and I think of Amy rummaging in her toolbox, and I wonder: What are the chances I could be loved that way?