He Was Shocked When He Found Out Organ Donation. and How Rules R Not Followed
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| Kensuke Koike |
Mr. Segal is the founder and chief executive of Organize, a nonprofit focused on reforming the organ donation system.
New York Times
For two years, I stopped answering my mother’s phone calls.
My father was waiting for a lifesaving heart transplant, and I feared she was calling to tell me he’d run out of time. I’d let the call go to voice mail, hoping the tone of her voice would give me enough warning to steel myself before calling back.
He survived, but only barely. At his sickest, his heart was pumping at just 8 percent capacity. After five years and three open-heart surgeries, he was on his way to meet an end-of-life counselor when a new heart finally became available.
He received his transplant on Feb. 10, 2009. Four days later, our family celebrated Valentine’s Day with a new heart. Our joy was unequivocal; we didn’t yet know that the system that saved my dad could also produce so much harm.
My dad blamed his lifelong Boston Red Sox fandom for his heart troubles. Genetic testing revealed the real cause: a fatal mutation that weakens the heart muscle and is so rare that no other family besides ours has ever been found to carry it. In the years that followed, my dad’s younger sister also received a heart transplant, while his older sister died waiting for one.
Two of my siblings and three of my cousins also carry the mutation and will almost certainly need heart transplants. I don’t carry the mutation. My mother made me promise that I would always take care of them.
I founded Organize, a nonprofit making it easier to register to become an organ donor. In 2015, Organize was selected for a role embedded inside the U.S. Department of Health and Human Services, which put us on the radar of whistle-blowers. I soon became inundated with allegations from people working inside the organ donation industry who felt they had nowhere else to turn.
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I know as well as anyone that organ donation saves lives — over 40,000 annually in the United States in recent years. But I was stunned to learn that organ procurement organizations — the federal contractors that coordinate organ donation from the deceased — that made those transplants possible were routinely violating ethical standards and putting patients at risk.
I heard allegations of negligence and financial fraud, including industry executives’ billing taxpayers for joyrides on private jets meant to transport organs; of organizations performing unnecessary procedures as part of a scheme to overbill Medicare. (Organ procurement organizations are nonprofits, but that doesn’t mean they aren’t trying to maximize financial reimbursements.) I’ve heard of poorer Americans waiting to receive organs passed over in favor of wealthier ones.
But one case in particular led me to remove myself from the donor registry and testify before Congress.
Anthony Thomas Hoover II was 33 when he arrived at a hospital in Kentucky, unresponsive after a drug overdose. Doctors told his family he was brain-dead, and the family agreed to remove him from life support. A procurement organization was called in to collect his organs.
While being evaluated for donation, Mr. Hoover opened his eyes and thrashed on the bed. The case should have been stopped. Instead, Mr. Hoover was sedated and given a paralytic drug. Hours later, he awoke again and moved his toes on command; his family was told he was merely exhibiting reflexes.
In the operating room, Mr. Hoover pulled his knees to his chest and shook his head “no.” Tears rolled down his face. The surgeon refused to proceed. Whistle-blowers say procurement executives called their staff member on-site at the hospital and demanded she find another surgeon to take the organs. No surgeon would.
Mr. Hoover survived, though he still asks his older sister, “Why did they try to kill me?”
It would be reassuring — and, for some, convenient — to treat Mr. Hoover’s experience as an exaggeration, even some macabre campfire tale. After all, a strict firewall is supposed to separate treating physicians (who are charged with decisions around the removal of life support and declaring when a patient is dead) and organ donation teams.
But a federal investigation found that firewall is often ignored. And The New York Times reported that health care workers in several states said they had witnessed procurement staff members “persuading hospital clinicians to administer morphine, propofol and other drugs to hasten the death of potential donors.” A former Obama White House official testified before Congress that she had heard directly from whistle-blowers at procurement organizations that they were trained to target inexperienced physicians, especially in rural areas, who may be less likely to push back.
Investigators have documented procurement organizations’ retaliating against whistle-blowers, withholding documents from federal investigators, manipulating medical records and engaging in fraud. That is not mere dysfunction. It is corruption.
Many of these cases have been documented by federal authorities and are under investigation by state and federal law enforcement.
For decades, the organ donation industry’s most visible failure was the opposite one: Most procurement organizations were not motivated enough to recover lifesaving organs.
Each procurement organization, with its own distinct jurisdiction, is one of the few government-sanctioned monopolies. Historically, there were few consequences for their poor performance, which meant they left thousands of lifesaving organs unrecovered. They also often prioritized the recovery of skin, tissue, bone and corneas, which can be far more lucrative than organs. That meant that patients like my dad languished on waiting lists; patients like my aunt died for lack of available organs for transplant.
In 2020, the federal government strengthened rules to hold procurement organizations more accountable; for the first time, poor performance could cost them their government contracts. The reforms have worked, helping drive a 25 percent increase in transplants.
The organizations have lobbied to weaken these standards, arguing that pressure to recover more organs pushes them to be overly aggressive in harvesting organs and threatens patient safety.
That is a false choice: The problem is not that the government demanded procurement organizations do a better job collecting more organs; it is that it failed to impose equally rigorous measures to ensure patient safety. Both my aunt and Mr. Hoover deserved to live.
Dr. Mehmet Oz, the leader of the Centers for Medicare & Medicaid Services and a former heart transplant surgeon, has promised to be “a new sheriff in town” on this issue. He should prove it by enforcing the 2020 performance rules, which more than a dozen procurement organizations have gone to court to shut down.
The centers should also use their patient-safety authority to immediately close any procurement organization that endangers patients. They recently did so in South Florida and have moved to do so in Kentucky. The organization serving New Jersey faces alarming allegations and should be next.
The White House should make procurement organizations a priority of its Medicare fraud crackdown. When he was a senator, Vice President JD Vance cosponsored 2023 legislation to break up the national organ monopoly, and he now leads the White House’s antifraud task force. He should push for more resources to expand the Justice Department’s organ donation investigations.
I spent years asking people to register as organ donors. I look forward to the day when I can add my own name back to the list. But first, the government needs to make the system worthy of that trust.
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