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Who Decides Whether This 26-Year-Old Woman Gets A Lung Transplant?

A message from Ashley Dias.

hide captionA message from Ashley Dias.

Chana Joffe-Walt/NPR

This is the first of two stories we're doing this week on organ transplants. See the second story, What Air Traffic Can Teach Us About Kidney Transplants

Ashley Dias, 26, is waiting for lungs. She has cystic fibrosis and needs a lung transplant to survive. She's got a tracheostomy tube in her neck so she can only mouth out words.

When doctors come to see Ashley in her hospital room at the Cleveland Clinic, she has only one question. She pulls out a marker and writes in enormous capital letters, as if it's the only thing she's ever wanted a voice to say:

ANY NEWS ON LUNGS

So far, there is no news on lungs. Ashley's still waiting.

Ashley's doctor, Marie Budev, has 124 patients on the waiting list for a lung transplant. The doctor desperately wants all of them to get transplants. But there aren't enough lungs to go around.

Scarcity is a problem with organ transplants in general. And, unlike other scarce resources, organs can't be bought or sold. So doctors have had to develop systems to figure out who should get transplants and who should wait. Coming up with a system that works well is very tricky.

Consider the story of what happened with livers.

Before 2002, being in the intensive care unit bumped up patients on the waiting list for livers. The assumption was that patients in the ICU were sicker. But in March 2002, the rules were changed, and being in the ICU no longer affected a patient's place on the list. Suddenly, far fewer liver patients were in the ICU.

In other words, doctors had been putting liver patients in the ICU not because they needed to be there, but simply to increase their chances of getting a liver.

"I care more about my patients than I care about patients in another city," says Dr. William Carey, a liver specialist at the Cleveland Clinic. "And it clearly is in the interest of my patient to get transplanted however I can make that happen."

Carey says his job is to do what's in the best interest of his patient. But it's also a doctor's job to do no harm. And in this case, a doctor acting in the best interest of his patient can cause harm by forcing other patients to wait — or worse.

"Many, many people die on the waiting list," says Jason Snyder, a UCLA economist who has studied organ allocation. "It's a really tough problem."

Problems with organ allocation haven't been limited to livers. Budev, Ashley's doctor, says lung doctors realized a few years ago that they were also gaming the system.

In 2005, lung doctors followed the liver doctors and put in place a system that would, among other things, make it harder for doctors to work the system in favor of their patients.

The system for lungs scores patients on objective medical data, including how much extra oxygen a patient needs and how far she can walk.

"There's really no way for me to manipulate that score to put that patient higher on the list," Budev says. "There's really no way to game the system."

Doctors have added a key check to the system: They are audited very closely. So if a doctor tried to, say, put all his patients on more oxygen in order to move them up the list, they would probably get caught. If not for the audits, Budev says, she would be tempted to bend the rules to help patients like Ashley move up the list.

For a system like this to work, you need people like Budev who understand that they are tempted to game the system. And a group of independent people — the auditors — trying to keep those tempted people in check.

"That patient is everything," Budev says. "And that's why I think we can't be trusted."

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