Who gets the kidneys and livers and hearts donated by people who die? For decades, the U.S. government has enforced strict rules — devised by doctors and ethicists — to ensure they go to the patients who need them the most. The system is supposed to be fair.
Increasingly, it is not. Doctors in the United States transplant more than 40,000 organs from deceased donors per year — the most in the world. And in more and more cases, officials skip patients at the top of waiting lists and send organs to people who are not as sick and have not been waiting as long. Those recipients are disproportionately white and better educated.
Last year, this happened nearly 20 percent of the time — six times as often as in 2020. Some people never got a transplant and ended up dying. I’ve been working with a team of Times journalists to uncover the problem, and our story was just published.
In today’s newsletter, I’ll explain why people at the front of the line don’t always receive the transplants they need.
‘Making a mockery’
More than 100,000 people in the United States are waiting for a transplant. But they don’t all appear on one list. Instead, a new list is created for each organ that becomes available — about 200 a day.
Here’s how it works: Every state has at least one nonprofit that recovers organs and uses algorithms to rank all potential recipients across the country. Priority goes to patients who are sicker, have been waiting longer and are nearby.
The nonprofits are supposed to follow the lists when they offer organs. But this can take time. A recipient’s doctor can decline an offer for a number of reasons — the lungs might be too big, the donor too old, the patient too far from the hospital. Meanwhile, the clock is ticking; organs last only so long outside the body.
So, sometimes, officials make exceptions: If an organ is at risk of becoming unusable, they ignore the rankings and simply pick a hospital to take the organ, ensuring that the donation doesn’t go to waste. For decades, this happened about 2 percent of the time.
But in 2020, government regulators began pressuring the nonprofits to throw away fewer organs. In a scramble to respond, the organizations began skipping patients far more often.
The nonprofits describe a tension between what they’re supposed to do (place as many organs as possible) and what hospitals often do (reject organs they deem a mismatch for the patient). The head of the nonprofits’ trade group told us that skipping was a necessary, if imperfect, solution. They say they ignore the lists to save lives and place organs that may otherwise spoil.
But our reporting found that they regularly do it — even with higher-quality organs that still have plenty of time. We found that they bypass patients because it’s easier to steer organs to hospitals with which they have relationships.
Those hospitals have freedom to choose which of their patients receive the organs, regardless of their spot on the waiting lists. They have an incentive to choose healthier recipients because they are judged on how many patients survive after surgery.
People throughout the transplant network have become alarmed about these practices. “They are making a mockery of the allocation system,” said Dr. Sumit Mohan, a kidney specialist at Columbia University. “It’s shocking. And it’s going to destroy trust in the system.”
Who lives and who dies?
We analyzed more than 500,000 organ transplants since 2004 and found that ignoring the queue did not prevent waste. In fact, the rate of discarded organs has gone up.
And the practice means Black and Latino people are treated worse. When nonprofits and hospitals ignore the queue, transplants disproportionately go to white and Asian patients and people with college degrees, the data shows.
Over the past five years, more than 1,200 people died after they got close to the top of a waiting list but were skipped, we found. It is possible that their doctors would have decided that the organ wasn’t a good fit for them, but they never got a chance to find out.
Patients rarely learn that they’ve been skipped. They just don’t get the call that can mean the difference between life and death.
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