CLAYPOOL, Ind. — After a week of tests, the doctors came to Angela Sroufe with tragic news: Her 30-year-old daughter, Amie Woodward, was brain-dead from a heroin overdose. Reluctantly, Sroufe agreed to donate her daughter’s organs.
As Woodward’s ventilator continued to click, her heart monitor continued to beep and her blood continued to circulate, keeping her organs viable, Sroufe sat combing her daughter’s hair, waiting for the transplant surgeon.
“I thought it would be worth it — all the pain of keeping her like that — if I knew a part of her was still here, alive inside someone else,” Sroufe said.
Amie Woodward, brain-dead from an overdose, and her mother, Angela Sroufe, in July 2016. (Courtesy of Angela Sroufe) No local transplant program was willing to take organs from Woodward, who had hepatitis C. (Courtesy of Angela Sroufe)
But no surgeon ever came. Woodward was infected with hepatitis C, and — though the disease can now be cured after transplant — no local transplant program would accept Woodward’s organs. A national search turned up a Philadelphia surgeon who wanted her kidneys, but that transaction fell apart, too.
Every day in America, 33 people die in need of new organs, and about 115,000 people are languishing on waiting lists. The chronic shortage of transplantable organs has spawned lawsuits by lung and liver patients, and forced industry officials to reassess rules that have governed organ distribution in America for decades.
115,759
Transplant
wait list
Deceased-donor transplants are falling further behind the number of patients awaiting life-saving organs.
83,731
28,588
Transplants
18,659
10,288
Deceased donor
6,457
2003
2017
115,759
Transplant
wait list
Deceased-donor transplants are falling further behind the number of patients awaiting life-saving organs.
83,731
28,588
Transplants
18,659
10,288
Deceased donor
6,457
2003
2017
But tinkering with distribution will do nothing to boost overall supply. To do that, medical researchers and industry leaders say the system must aggressively pursue more less-than-perfect donors like Woodward — people often dismissed as too sick, too old or too complicated — and persuade transplant surgeons to accept their less-than-perfect organs.
Numerous studies, including two major estimates by industry researchers, show that the system could be recovering more than twice as many organs as it does now, primarily by expanding the types of donors it pursues.
A Washington Post analysis of 2.7 million death records from 2016 found that as many as 27,000 people met established criteria for organ donation — more than twice the number of actual donors that year. At its current average of about three organs per donor, the industry could have produced more than 75,000 organs for transplant that year — enough to put the nation on pace to wipe out the waiting lists within a few years.
The vast majority of untapped donors were older than 50, The Post found. About 40 percent of donors were never declared brain-dead, meaning that local transplant officials would have to take them off life support and wait for their hearts to stop pumping, an often lengthy process that can leave organs damaged.
The death records did not reveal how many untapped donors were infected with curable diseases such as hepatitis C or were considered at higher risk of disease because they were intravenous drug users, former prison inmates or sex workers. However, the untapped potential appears to be significant: Doctors transplanted more than 1,400 organs from infected donors last year, more than double the number three years earlier.
Advocates say the federal government has created strong disincentives to using these organs. Under federal law, patients must be told if an organ is infected or at increased risk. Though the infections can be cured, even very sick patients often turn them down.
Transplant surgeons are graded on the one-year survival rate of their patients but face no penalty when patients die on waiting lists. That leaves many unwilling to accept less-than-perfect organs, including those from older donors, which may not work as well, especially in very sick patients and younger recipients whose bodies more often reject them.
“What is the motivation to put our necks out there to use those organs if we are going to get in trouble?” said transplant surgeon Ryutaro Hirose, transplant surgeon and associate director of the University of California at San Francisco general surgery residency program.
If surgeons do transplant such organs, it can cost more to help the recipient recover. And “if they need more expensive drugs, more hospital time, you are going to lose money,” said Alan Reed, director of the University of Iowa Hospitals and Clinics Organ Transplant Center. “You can’t lose money and expect to stay in the game.”
Given the lack of interest in these organs, the local agencies charged with recovering organs for transplant often put less effort into collecting them, industry experts say. If an organ is recovered but not transplanted, these agencies — a network of 58 nonprofit groups known as organ procurement organizations, or OPOs — may not be paid. Less-than-perfect donors also tend to require more care and testing before their organs are removed, jacking up costs to the OPO that may not immediately be reimbursed even if the organ is ultimately transplanted.
“I personally try not to have it influence our behavior, but I can’t believe it doesn’t influence other [people’s] behavior,” said Tom Mone, chief executive of OneLegacy in Los Angeles, one of the nation’s largest OPOs.
Increasingly, medical researchers and industry leaders view less-than-perfect organs as worth the risk and effort, and are pushing for changes to federal regulatory standards. Earlier this year, researchers hired by the industry to measure its performance wrote that the supply of organs could be dramatically increased by pursuing older, sicker donors.
“Even poor donor quality kidneys can improve patient outcomes compared with remaining on the waiting list,” they wrote.
This summer, doctors at Harvard and Johns Hopkins wrote in the New England Journal of Medicine that “a largely untapped opportunity” lies in “suboptimal” organs “that have traditionally been considered unfit for transplantation.”
“I call them good organs with bad stories,” said George Loss, medical director of the Ochsner Multi-Organ Transplant Institute in New Orleans, which specializes in organs that have been rejected elsewhere.
Loss said he routinely uses livers from people who were obese, heavy drinkers or suffered from curable diseases, including hepatitis C. His center has doubled liver transplants over the past decade — and in August successfully transplanted a liver from an 83-year-old donor.
Too many people in the transplant industry “are waiting for the perfect organ every time for their sickest patients,” Loss said. “That needs to change.”
While OPOs exceed expectations when
collecting organs from younger brain-dead
donors, The Post found that the organizations
in 2016 could have been collecting many more
organs from older donors and from those
who are not declared brain-dead, so-called
cardiac-death donors.
0
10
20
30
40 thousand
organs
AGE
Black lines represent
expected potential
1-17
18-49
Over 50
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1-17
18-49
Over 50
Source: Post analysis of death records, Organ Procurement and Transplantation Network for 2016.
While OPOs exceed expectations when collecting organs
from younger brain-dead donors, The Post found that
the organizations in 2016 could have been collecting
many more organs from older donors and from those
who are not declared brain-dead, so-called
cardiac-death donors.
0
10
20
30
40 thousand
organs
AGE
Black lines represent
expected potential
1-17
18-49
Over 50
Gaps represent missed transplant opportunities
1-17
18-49
Over 50
Source: Post analysis of death records, Organ Procurement and Transplantation Network for 2016.
While OPOs exceed expectations when collecting organs from
younger brain-dead donors, The Post found that the
organizations in 2016 could have been collecting many more
organs from older donors and from those who are
not declared brain-dead, so-called cardiac-death donors.
0
10
20
30
40 thousand
organs
AGE
Black lines represent
expected potential
1-17
18-49
Over 50
Gaps represent missed transplant opportunities
1-17
18-49
Over 50
Source: Post analysis of death records, Organ Procurement and Transplantation Network for 2016.
While OPOs exceed expectations when collecting organs from younger
brain-dead donors, The Post found that the organizations in 2016 could have
been collecting many more organs from older donors and from those who are
not declared brain-dead, so-called cardiac-death donors.
0
10
20
30
40 thousand
organs
AGE
Black lines represent
expected potential
1-17
18-49
Over 50
Gaps represent missed transplant opportunities
1-17
18-49
Over 50
Source: Post analysis of death records, Organ Procurement and Transplantation Network for 2016.
A convoluted path
Less than 2 percent of U.S. deaths occur under circumstances conducive to donation. Most people die before they reach a hospital where their organs can be preserved, or suffer from conditions that make their organs unusable, such as most cancers and certain incurable infections.
Even with the best candidates for donation, the path from hospital ICU to transplant surgery can be long and convoluted.
It starts when an alert goes up from the hospital to the local OPO, which is charged by federal law with recovering organs from deceased donors in a specific region. The OPOs approach families of prospective donors and attempt to obtain consent. If it is given, they monitor the donor’s medical care to make sure the organs remain healthy until they can be removed.
OPOs then list the organs in a national database that matches them with recipients. Generally, the organs are offered first to transplant centers in the local area, and the search expands until a match can be found.
At the other end of the path are transplant surgeons on the lookout for organs that offer a good match for their sickest patients. In addition to checking blood type and organ size, surgeons look for organs that are close by. The farther an organ has to travel, the more time it spends outside the donor, which can affect performance. In general, hearts should reach recipients within four hours, while kidneys can be transplanted after 24 hours or more.
Time is short, and organs that are not quickly claimed can be lost. Last year, 4,905 organs were recovered but not transplanted, about one out of every eight organs intended for transplant.
Snags are common even under ideal circumstances. Industry statistics show that OPOs lose a quarter of their most promising cases — about 3,000 donors a year — because they are unable to secure consent.
Industry experts say OPOs could boost their odds by hiring experienced grief counselors and educating staff about cultural and religious issues in their communities. Many families don’t speak English or have religious concerns about desecrating the body.
But OPO officials say it is difficult to overcome the deep-seated fear some families have of organ donation.
“There are still so many myths that exist,” said Kirsten Heintz, spokeswoman at Making Life Happen, an OPO in Louisiana. Many people think if they register as a donor, doctors “won’t try to save you. They’re just going to try to take your organs.”
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The organs are removed from the donor and transported to the transplant centers where they are transferred to the recipients.
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A patient near death is identified as a potential donor. The hospital medical team continues care until the patient's heart stops beating or brain-death is declared. The patient remains on a ventilator to keep organs healthy.
The procurement team determines whether the patient is a registered organ donor, seeks consent from the family and takes over care of the patient.
Up to eight organs can be recovered, and speed is important to maintain the organs' viability. Scroll to see the steps to recovering these organs.
When matches are found, transplant centers accept organs from the procurement team and notify the recipients. Surgeons on both ends prepare for surgery.
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Up to eight organs can be recovered, and speed is important to maintain the organs' viability. Scroll to see the steps to recovering these organs.
A patient near death is identified as a potential donor. The hospital medical team continues care until the patient's heart stops beating or brain-death is declared. The patient remains on a ventilator to keep organs healthy.
When matches are found, transplant centers accept organs from the procurement team and notify the recipients. Surgeons on both ends prepare for surgery.
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When matches are found, transplant centers accept organs from the procurement team and notify the recipients. Surgeons on both ends prepare for surgery.
The procurement team determines whether the patient is a registered organ donor, seeks consent from the family and takes over care of the patient.
A patient near death is identified as a potential donor. The hospital medical team continues care until the patient's heart stops beating or brain-death is declared. The patient remains on a ventilator to keep organs healthy.
Up to eight organs can be recovered, and speed is important to maintain the organs' viability. Scroll to see the steps to recovering these organs.
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‘The OPO shut this down’
When a donor is less than perfect, organ recovery can be infinitely more complicated. In Amie Woodward’s case, the local OPO, the Indiana Donor Network, made an effort to recover her organs but struggled to find a transplant program willing to take them.
“Very few transplant centers were accepting [hepatitis C] positive organs” in 2016, Mark Back, the OPO’s spokesman, said in an email. Of 18 hepatitis C donors the OPO pursued that year, 11 resulted in transplants.
When the OPO finally found a surgeon in Philadelphia who wanted Woodward’s kidneys, the transaction unraveled because the OPO could not find a local surgeon to remove them. Instead, the OPO told the Philadelphia surgeon he would have to send his own team to Fort Wayne, an unusual and costly request that forced him to turn the kidneys down.
In an email to researchers, the Philadelphia surgeon blamed the OPO for what he described as a prime example of organ waste.
“I would have used them,” he wrote of Woodward’s kidneys in an email obtained by The Post on condition that the medical team not be identified. “In the end, the OPO shut this down.”
But Rich Amos, manager of organ services for the Indiana Donor Network, said the OPO did everything it could in Woodward’s case.
“We spent a number of days trying to move forward,” he said. “All transplant centers refused the organs.”
Sroufe said she was “devastated” when the OPO told her they couldn’t find a match for her daughter’s organs. She was stunned to learn later about the dispute over a surgeon.
The OPO “told us there was a surgeon standing by,” she said. “If they needed more time to find one, we would have agreed to give them more time. They didn’t ask.”
Angela Sroufe said she was “devastated” to learn that her daughter’s organs would go unused. Sroufe is seen with her husband, Edward. (Salwan Georges/The Washington Post)
Measuring untapped potential
For decades, federal regulators have known that the transplant system was falling far short of its potential. Blame has fallen heavily on the OPOs.
In 2012, the federal government contracted with the United Network for Organ Sharing (UNOS), a private nonprofit group that holds an exclusive federal contract to manage the organ donation system, to oversee with industry officials a comprehensive $1.6 million study of donor potential.
The study concluded that OPOs should have collected organs from 37,000 donors in 2010 — five times the number of actual donors that year. The results, the report said, “strongly suggest that significant donor potential exists that is not currently being realized.”
OPO officials complained that the study vastly overstated the number of potential donors, in part by underestimating the difficulty of recovering organs from people who are not declared brain-dead, so-called cardiac-death donors. So researchers based at the University of Pennsylvania teamed up with OPO leaders to refine the methodology.
Their conclusion, published last year in the American Journal of Transplantation, was that OPOs could have collected organs from as many as 24,000 people in 2012 — less than the previous estimate, but still three times the number of actual donors that year. The researchers then confirmed their results by looking at individual patient records at two OPOs.
Ken Moritsugu, former acting U.S. surgeon general and an author of the study, called it “really a game changer. It throws the whole system into question.”
For this article, The Post replicated the University of Pennsylvania methodology, using it to examine 45 million death records from 1999 to 2016. The Post filtered out people who did not die as hospital inpatients, who were older than 75 or who had one of 303 diagnoses that make donation unlikely. Among the remaining records, The Post searched for people who had one of 179 diagnoses identified by the transplant industry as signaling a likely donor.
The Post found that OPOs excel at capturing donors younger than 50, especially people who are declared brain-dead. However, OPOs recovered organs from less than a quarter of potential donors between the ages of 50 and 65, and only 11 percent of donors 65 to 75. For donors of all ages, much of the untapped potential lay in cardiac deaths.
The Post also found wide variation in OPO performance. While about a dozen OPOs did a fairly good job of maximizing donor potential in their regions, most collected fewer than half the organs available. A dozen recovered fewer than a third.
The map below shows the share of potential
organs recovered by designated donation
service areas across the United States.
Some organ procurement organizations get
more than 60 percent of the estimated
available supply from deceased donors, but
most get less than half.
32%
39%
43%
50%
Worse
Better
Percentage of the estimated
available supply from deceased
donors between 2014 and 2016
Note: The share of potential organs recovered was calculated by comparing organs procured with The Post’s estimate of potential donors based on age, cause of death and other factors from U.S. death certificates. See more detail on methodology.
The map below shows the share of potential
organs recovered by designated donation service
areas across the United States. Some organ
procurement organizations get more than
60 percent of the estimated available supply
from deceased donors, but most get less than half.
32%
39%
43%
50%
Worse
Better
Percentage of the estimated available supply from
deceased donors between 2014 and 2016
Note: The share of potential organs recovered was calculated by comparing organs procured with The Post’s estimate of potential donors based on age, cause of death and other factors from U.S. death certificates. See more detail on methodology.
The map below shows the share of potential organs
recovered by designated donation service areas across the
United States. Some organ procurement organizations get
more than 60 percent of the estimated available supply
from deceased donors, but most get less than half.
32%
39%
43%
50%
Worse
Better
Percentage of the estimated available supply from
deceased donors between 2014 and 2016
Note: The share of potential organs recovered was calculated by comparing organs procured with The Post’s estimate of potential donors based on age, cause of death and other factors from U.S. death certificates. See more detail on methodology.
The map below shows the share of potential organs recovered by
designated donation service areas across the United States. Some organ
procurement organizations get more than 60 percent of the estimated
available supply from deceased donors, but most get less than half.
32%
39%
43%
50%
Worse
Better
Percentage of the estimated available supply from
deceased donors between 2014 and 2016
Note: The share of potential organs recovered was calculated by comparing organs procured with The Post’s estimate of potential donors based on age, cause of death and other factors from U.S. death certificates. See more detail on methodology.
The map below shows the share of potential organs recovered by designated donation service areas
across the United States. Some organ procurement organizations get more than 60 percent of the
estimated available supply from deceased donors, but most get less than half.
32%
39%
43%
50%
Worse
Better
Percentage of the estimated available supply from
deceased donors between 2014 and 2016
Note: The share of potential organs recovered was calculated by comparing organs procured with The Post’s estimate of potential donors based on age, cause of death and other factors from U.S. death certificates. See more detail on methodology.
Improving organ recovery
Alexandra Glazier, head of New England Donor Services , an OPO based in Massachusetts, said the new methodology still overstates the number of untapped donors. “What we’re seeing on the ground at the hospital, we’re coming up with far less actual potential,” Glazier said.
Some policymakers are growing impatient with that argument, as well as the lack of information about the inner workings of OPOs, much of which is not publicly available because of patient confidentiality laws.
“We can’t continue to allow [thousands of] Americans to die each year waiting for lifesaving organs that we know are available if only this system were being managed by competent individuals operating in the light of day,” said Sen. Todd C. Young (R-Ind.), one of several lawmakers who have focused on the issue.
Industry experts note that a half-dozen OPOs have dramatically improved recovery rates in recent years, in part by aggressively placing organs that were once deemed unusable.
LifeShare of Oklahoma, for example, has doubled organ recoveries over the past five years, with more than half of that increase coming from cardiac-death donors or donors whose organs were somehow compromised, said chief executive Jeff Orlowski.
The key, Orlowski said, is pressing local transplant surgeons to explain why they reject some organs, asking what might be done to prove the organs’ viability and building relationships with innovative transplant centers elsewhere.
“There are multiple OPOs in this country that found ways to increase the placement of these organs,” said Kevin Myer, chief executive of LifeGift in Houston, where recovery rates have increased by 40 percent since he took over in 2013.
“Just because your local center says, ‘no’ doesn’t mean that you shouldn’t be calling . . . other centers” that routinely use them.
‘That kidney was not for me’
With a growing number of OPOs and transplant centers beginning to aggressively pursue less-than-perfect organs, recovery rates have risen. Last year, the system transplanted a record 31,600 organs. (A sharp rise in overdose deaths has been another big factor.)
Still, hurdles remain. William Chapman, director of abdominal organ transplant at Washington University in St. Louis, said about one in 10 of his patients reject such organs.
“I find it very surprising when they say no,” Chapman said. “This is not an elective surgery. And there are risks with all donors. You don’t know what someone may have done just last week.”
Jorge Perez Remache, 46, of Queens, N.Y., has told his doctors he would not accept a liver infected with hepatitis C. His son, Alex Perez, said his family supports the decision.
“I’d rather him have a healthy liver that has no complications at all,” Perez said, adding that it was likely a viral infection that ruined his father’s liver. “I don’t feel comfortable having him fight another virus.”
For years, Angela Davis, 49, of Springfield Gardens, N.Y., rejected offers of increased-risk kidneys, including one last year from a donor who had abused alcohol and IV drugs.
“I prayed about it, and I felt like that kidney was not for me,” said Davis, who runs a nonprofit dialysis support group and said it is common for patients to worry about the lifestyle of their donor.
“Spirits transfer: ‘If this person was a druggie and a gambler, living a wild lifestyle, I don’t want that spirit inside me.’ That’s what they tell me,” she said.
This summer, after 11 years on the waiting list at Mount Sinai Medical Center, Davis relented. But by then it was too late: Doctors concluded she was no longer healthy enough for a successful kidney transplant and removed her from the waiting list. She likely will have to stay on dialysis for the rest of her life.
“Hindsight is 20/20,” she said.
Sroufe leaves a letter for her daughter at her grave in Wabash, Ind., this summer. (Salwan Georges/The Washington Post)
Rehabilitated lungs
Some transplant centers are working hard to persuade patients to accept less-than-perfect organs. The Mayo Clinic in Jacksonville, Fla., for example, is taking part in a four-year-old trial using a new technology that rehabilitates lungs that have lost some function during the deaths of their original owners. So far, the rehabilitated lungs have been transplanted successfully into 66 patients at eight transplant centers.
Among them is Jennilyn Green, 34, a cystic fibrosis patient from Leesburg, Fla.
“My biggest question was, What if the lungs fail? Would I be a candidate to get other lungs?” she recalled. Yes, her surgeon assured her, she would. So she packed her bag and set her cellphone to play Pink’s “Get the Party Started” when the clinic called.
The phone rang at 5:30 a.m. on Aug. 12: Surgeons had found a pair of lungs that had been rejected by every transplant center in the Midwestern region where the donor died. They were filled with fluid and not expanding properly.
If the machine could get them working again, would she take them?
Green said she hesitated at first. “With the added risks, I thought I could wait a bit,” she said. But “every day that passed without the transplant I could have gotten sick again, and I could have died.”
In the end, she said yes.
Four months later, she is recovering at home and walking an hour a day on a treadmill. For the first time in years, Green said, she can walk up a flight of stairs without stopping to rest.
“I have a long way to go, but I am already so much better,” she said. “I can’t remember the last time I felt this good.”
Julie Tate, Anne Midgette and Alice Crites contributed to this report.
Credits
Graphics by Aaron Steckelberg and Manas Sharma; Design by Joanne Lee; Photo editing by Wendy Galietta; Video by Lee Powell; Video graphics by Daron Taylor.
Methodology
The Post analyzed every recorded death in the country from 1999 through 2016 to estimate the number of potential organ donors. See detailed methodology here.
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