10/15/2019 9:40:00 AM Where you die can affect your chance of being an organ donor
WASHINGTON (AP) — If Roland Henry had died in a different part of the country, his organs might have been recovered. And lives could have been saved.
But the local organ collection agency said no. It gave no reason, no explanation to his family, though the Connecticut man appeared to be a well-qualified donor despite advancing age: He died in a hospital, on a ventilator, previously healthy until a car crash that led to a stroke.
“It was devastating to be told there was nothing they considered worthy of donation. Nada. Not a kidney, not a liver, not tissue,” recalled Henry’s daughter, Donna Cryer, president of the nonprofit Global Liver Institute and herself a recipient of a liver transplant.
Henry’s case illustrates troubling uncertainty in a transplant system run by government contractors that are under fire for letting potentially usable organs go to waste.
The Associated Press took a close look at that system and calculated that some of those agencies are securing deceased donors at half the rate of others — even as 113,000 people linger on the nation’s transplant waiting list, and about 20 die each day.
“What we have is broken. We know it is costing people’s lives,” said Dr. Seth Karp, Vanderbilt University’s transplant chief.
Under U.S. transplant rules, the country is divided into 58 zones, each assigned an “organ procurement organization” in charge of donation at death. Those OPOs are matchmakers with a tough job: get donation consent , collect organs quickly and get them to the right transplant center before they deteriorate, even if a hospital calls with a possible donor at 3 a.m.
How well are they doing? It’s almost impossible to tell. OPOs self-report to the government a subjective measure, one even they call flawed. That standard offers little way to directly compare OPOs and learn which could do better, or to hold poor performers accountable for missed opportunities.
“Nobody comes behind them and says, ‘You actually could have recovered 20 to 30% more and you didn’t,”’ said Kevin Longino, a kidney transplant recipient who heads the National Kidney Foundation.
That may be about to change. The Trump administration is planning a major overhaul , stricter standards to make it easier to compare OPOs and push them to improve. One measure under consideration: Using federal death records to determine the entire pool of potential donors each OPO can draw from.
A study published this summer in the American Journal of Transplantation called that approach more fair and verifiable than today’s standard. The AP modeled its own analysis of OPO performance on that research, and found that in 2017, even comparing regions with similar pools of acceptable donors, disparities were large. Philadelphia outperformed New York City, for example. The OPO serving parts of Kentucky lagged nearby Missouri.
More important, the analysis shows the biggest impact would be in places with large populations of potential donors. For example, OneLegacy in Los Angeles recovered 487 donors in 2017, second only to Philadelphia’s Gift of Life. However, the Los Angeles OPO also had the highest number of potential donors. If OneLegacy had matched Gift of LIfe’s higher donor rate, the AP calculated it would have secured 866 donors, instead.
OneLegacy CEO Tom Mone cautions that measure overestimates potential donors, including people who are disqualified after scrutinizing their medical records.
It also counts less-than-perfect donors — older donors, or those with certain medical conditions — that can be hard for OPOs to handle, Mone added. Those organs can be life-saving for the right patient but too often transplant centers won’t take the chance, a disincentive for OPOs to collect them.
Still, with the organ shortage so severe that transplant centers are fighting over scarce livers in court, a growing number of OPOs say the death record-based standard will spur more aggressive pursuit of donors.
“It’s a denominator that can’t be manipulated,” said Ginny McBride, executive director of OurLegacy in east-central Florida. She was one of 17 OPO leaders who recently wrote Medicare, which regulates the nonprofits and reimburses costs of organ acquisition, to push the change.
“It might tell us, ‘Hey, we need to kick it up a notch.’ And it might tell the government who they should and shouldn’t be certifying” to collect organs, she added.
WHO CAN DONATE?
Only about 2 percent of Americans die in circumstances that allow for donation. Die before reaching a hospital, and organs can’t be preserved. Illnesses such as cancer or infections also can rule out donation.
While young donors tend to be healthier, there’s no upper age limit: Studies show healthy organs from seniors like Henry, who was 78, and even octogenarians still can work well, especially if given to an older recipient.
Last year, out of about 2.8 million deaths, there were 10,721 deceased donors. Their organs led to 29,680 transplants.
But a 2017 study led by University of Pennsylvania researchers examined deaths, donations and health records and calculated that a better-functioning system could produce up to 28,000 more donated organs a year.
Objectively evaluating OPOs is one key to that goal but even if the estimate is too high, “every single donation we recover is another life saved and makes it worth it,” said Greg Segal of the transplant advocacy group Organize, whose father waited five years for a heart transplant.
PATIENTS LANGUISH ON THE WAITING LIST
More donors can’t come quickly enough for waiting patients, especially those caught in a legal battle over how to distribute scarce livers. For nine days earlier this year, a new national policy meant hospitals that once got first dibs for livers donated nearby instead saw the organs shipped to sicker patients up to 500 miles away, with pediatric donations earmarked for sick children. Then a federal judge put the new rules on hold .
In Pennsylvania, toddler Evelyn Yargar got a new liver during that window, from a teen who died several states away. A few days later and the organ might have gone to an adult instead. And because University of Pittsburgh surgeons knew 14-month-old Evelyn needed just a small piece of that liver, which can grow into a fully functioning organ, an adult in still another state got the rest.
“I just don’t understand why a child can’t have a part of any donor’s liver,” said Evelyn’s mother, Bobbi Yargar of Charleroi, Pennsylvania.
However the court fight turns out, only a bigger supply will ease struggles over organ distribution. And if Medicare changes performance standards, that won’t make OPOs collect more organs overnight.
“I don’t think there’s another 30,000 organs out there lying around to get transplanted,” cautioned Brockmeier, the Mid-America chief. Still, she knows her own OPO could improve, and she called on others to “stop battling over what the metric is and decide what we’re going to do to maximize donation.”