A couple of years ago, Portland mom Erika Zak survived thyroid cancer to deliver a beautiful baby daughter, Loi. But a few months later, Erika fell sick with colon cancer and she needed a liver transplant.
“It broke my heart,” said Jenna Zak, Erika’s twin sister. “She looked sicker every time I saw her. She was yellower, she was skinnier. Her hair was falling out.”
About 17,000 Americans are on the waiting list for a liver, according to Columbia University. The average wait is almost a year. And every day, eight people die waiting.
Erika Zak’s wait revolved around watching the phone and saving strength for Loi and her husband, Scott.
“Loi would come home and she’d go hug her mom and sit in bed and talk,” Jenna Zak said. “Then she’d have to leave because Erika was too tired. … It was the same thing over and over again.”
It’s a position 113,000 Americans find themselves in every day, waiting for a liver, a heart, a kidney, a pancreas, a lung, even intestines. And some say perfectly healthy organs aren’t being collected because the system is inefficient.
“There’s no competition in the system,” Zak said.
Oregon’s local procurement organization, the Pacific Northwest Transplant Bank, only recovers organs from about 30% of people who die. That means it ranks 50th out of 58 such organizations around the country.
The system was set up by the Reagan administration nearly 40 years ago. It created 58 so called organ procurement organizations or OPOs, as government-sanctioned monopolies, each covering their own geographic area.
The hope was monopolies would avoid the kind of competition that results in organs being sold to the highest bidder. And it has. But Jennifer Erickson, who worked on the issue as a policy adviser in the Obama White House, said the lack of competition has also led to inefficiencies across the system.
“The biggest problem is a complete lack of accountability,” Erickson said.
“They’re allowed to self-interpret and self-report their own performance to the federal government. So basically the federal government tells them to write their own report cards and tell them how they’ve been doing,” she said.
The Centers for Medicare and Medicaid Services, or CMS, recently came out with proposed new rules to improve the system. It wants all OPOs to calculate their donation and transplantation rates the same way, so they can be easily compared and ranked.
Under the proposed rules, Oregon's OPO, the Pacific Northwest Transplant Bank, would be failing. To pass, it would have to increase both its donor and transplant rates.
Transplant bank executive director Craig Van De Walker said there is room for improvement, but he’s of two minds about the changes.
“I think comparing all the OPOs to an independent benchmark is good for the industry. The CMS measures, I think will probably take a little, finessing, a little work to get them where they're usable and acceptable."
Jennifer Erickson said OPOs have other problems too. For example, staff don’t do a good job of discussing organ donation with people who’ve just lost a loved one.
“The government contractors don’t show up. Or show up late. Or show up in a way that their manner might turn off the family on what is so often the worst day of someone’s life,” Erickson said. “And the consequence of that is that people die.”
Van De Walker disagrees. He said his staff members are specially trained to talk to families of potential donors, but sometimes there are religious or cultural barriers.
“We don’t talk to a family when they still have hope for survival, because that sends the wrong message,” Van De Walker said. “But sometimes by the time they’ve decided that they’re ready to let this person go, they’re so emotionally and physically exhausted they just can’t manage anything else.”
Experts say organ procurement organizations aren’t the only problem with the transplant system.
Some hospitals don’t report donors quick enough. For example, Hawaii doesn’t have a lung transplant program, so hospitals there aren’t quick to report lung donors. And while there’s a great need for lungs in Florida, organs don’t travel well because of the time involved.
Experts also say surgeons sometimes turn down less-than-perfect organs. David Goldberg recently released a study out of the University of Pennsylvania that found 28,000 more eligible organs could be used every year.
“The kidneys or the liver or the heart from a 20-year-old who dies from trauma, that’s functioning perfectly, is always going to be used,” Goldberg said. “But the kidneys or the liver from a 75-year-old with medical problems, one center may use it, but another center might not.”
About 60% of kidneys discarded in the U.S. would have been used in France, according to another Unniversity of Pennsylvania study.
Surgeon Dr. Susan Orloff oversees hundreds of organ transplants at Oregon Health & Science University in Portland. She’s in favor of using less-than-perfect organs, but said the current system does not reward risk.
“I feel like our program is fairly aggressive. But then if you have two perhaps deaths or bad complications, then you’re going to reel back a bit on the next few because you really are worried about being potentially flagged,” Orloff said.
A flagging can mean extra site visits or it can potentially force a transplant clinic to close, at least temporarily.
Back at Jenna Zak’s home, she said her twin Erika had agreed to take any liver, whether the donor suffered from hepatitis C or was in their 70s. Erika even traveled to Cleveland, where surgeons were more willing to implant a less-than-perfect organ.
“I think in our minds, like, they went out in June. We were all convinced that they’d be back by September. And then it was Thanksgiving, then it was Christmas, then it was the New Year,” Jenna Zak said. “Time kept passing and it was like, oh my god, this is taking a really long time.”
Eventually, doctors did find a liver. Erika Zak kissed her husband and daughter before going into the operating room, but she didn't survive the surgery.
Editor's note: This story has been updated for clarity.