It’s tough holding an audience of teenagers, but Kim Harbur had them at turns quiet, respectful and buzzing with excitement Friday morning at Lee’s Summit North High School.
Since her second son, Luke, received a liver transplant in infancy, Harbur has talked to thousands of students at the critical age — when they’re about to apply for their first driver’s license and have the opportunity to sign up as organ donors.
Luke, now an energetic college student, told the Lee’s Summit teens about his life as a liver recipient, even showing off the surgery scar on his abdomen.
The kids peppered them with questions. Can an organ donor have an open casket funeral service? Can you freeze organs to preserve them? Can someone with a donor liver drink alcohol? (Yes, no and in moderation.)
Kim Harbur asked them all to think about whether they wanted to become organ donors and to discuss their decision with their parents.
Presentations like this play a critical role in making Kansas City one of the most successful places in the United States for organ donation.
Experts say Midwesterners generally are more receptive to organ donation than those in parts of the country less trusting of doctors and hospitals.
The Kansas City region’s transplant network has built on that willingness with an impressive infrastructure and well-tended relationships with the hospitals that supply and transplant the organs.
And while there’s debate about whether the Midwest’s bounty of organs should be shared more broadly across the country, the people here who transplant those organs say the better answer is to collect more organs everywhere.
About 123,000 people are waiting right now in the U.S. for a donor organ. And each day an average of 21 people die before they can get one.
And as the demand for donor organs has risen steadily over the years, the supply has remained stubbornly in the doldrums.
That supply could be boosted considerably, potentially by hundreds of organs each year, researchers at the University of Kansas and University of Pennsylvania say, if underperforming regional organ transplant programs just stepped up their game. In other words, if they became more like Kansas City.
“It’s a problem with the system. We need to get every organization performing better,” said Richard Gilroy, medical director for liver transplantation at KU Medical Center.
In a study published recently in the American Journal of Transplantation, Gilroy and colleagues at the University of Pennsylvania crunched six years of national data on how many patients that hospitals had identified as eligible actually ended up organ donors. They found that the success rate for converting potential donors into actual donors varied among the nation’s 58 donor service areas, from a high of 89.5 percent to a low of 63.5 percent.
If the lowest-performing areas had just reached the rate of the middle of the pack, they would have yielded an extra 2,679 donor organs over the six-year period, the researchers calculated. Getting every area up to the 75th percentile would have bumped the total number of additional organs to 5,710.
Such success, Gilroy said, takes the cooperation of the local community, the hospitals that identify potential donors, the medical centers that perform transplants and the regional organ procurement organizations, or OPOs. These nonprofit agencies operate in each donor service area and work with hospitals and families that have donor candidates.
“It’s difficult to get all four of these partners together,” Gilroy said. “And easier to make excuses for why it can’t be improved.”
That’s where Kansas City comes in. Its regional had the fourth-highest success rate in the nation, Gilroy’s research found.
“It’s the sense of community,” Gilroy said.
In Kansas City and the surrounding region, hospitals work well with the Midwest Transplant Network, the region’s OPO, he said. And local news media and Harbur’s organization, the Overland Park-based Gift of Life, raise awareness and keep a spotlight on transplantation.
Chris Brown was among Washington High School students in Kansas City, Kan., who heard Harbur speak in the spring of 2006, just before he got his driver’s license.
“I didn’t know anything about organ donation. We had never talked about it,” said his mother, Tonya Brown.
But after Chris got his license, he broke the news to his father that he had signed up to be a donor.
“He was smiling when he told him. It was the right thing to do, he thought,” Tonya Brown said.
Chris was a happy, well-liked kid looking forward to graduating from high school and going on to study to be a machinist, his mother said.
Late in Chris’ senior year, his car was struck from the rear by a drunken driver. Chris was wearing his seat belt. His body suffered barely a scratch, but whiplash from the impact severely damaged his brain.
Chris’s heart, liver, kidneys, lungs, corneas and pancreas were all donated to waiting patients. His parents, his two brothers and many of his classmates signed up as donors.
“We’re proud of him, of what he did,” Tonya Brown said. “There were so many people who learned from his gift and his selflessness.”
Rob Linderer, chief executive officer of the Midwest Transplant Network, can tick off a long list of reasons why Kansas City has been successful, the civic-minded willingness of Midwesterners to become organ donors being the first.
But the organization also has been doing many things to optimize the number of organs it collects.
The transplant network has trained “requestors,” many of them social workers, to support grieving families considering donating a loved one’s organs. It has a half dozen physicians on call to consult with hospitals on how best to maintain donors on life support — adjusting ventilators, administering intravenous fluids to maintain adequate blood pressure — until recipients can be found for the donors’ organs.
“It’s almost like a special forces team of critical care specialists who have developed this expertise,” Linderer said.
The Midwest Transplant Network is among the few OPOs with its own lab to speed organ matches. It has its own dedicated aircraft, a leased Cessna CJ1 jet plane, and employs several pilots to fly medical staff and organs from the donor’s hospital to the recipient.
“That sets us apart,” Linderer said. “There are probably just 10 OPOs with their own aircraft.”
Linderer said the transplant network also works hard to maintain good relations with hospitals that have donors and with the transplant teams at the hospitals performing the surgery.
The Midwest Transplant Network has an “every organ, every time” policy. That means its team will go to hospitals even for marginal donors, such an elderly patients whose only salvageable transplant organ may be their liver. Organ procurement organizations can be deterred from considering such donors because they don’t meet the standards by which the OPOs are judged.
But for Linderer, those trips warrant the effort because they build relationships with hospitals and give them an incentive to regularly report potential donors.
The transplant network also holds a weekly conference call with transplant hospitals to review recent cases and even blow off steam. The stress of determining whether a donor’s organs are usable and finding recipients can lead to tension between hospital and transplant network staffs.
“Some of our colleagues around the country have terrible relations with their transplant centers,” Linderer said.
Some transplant experts aren’t as certain as Gilroy of KU Medical Center that donation rates can be brought up substantially in every region where they’re low.
The differing demographics across the nation work against that, said David Mulligan, director of Yale-New Haven Hospital’s Transplantation Center.
On the East and West coasts, people are more likely to die at an advanced age with cancer or diabetes and are ineligible to donate their organs, Mulligan said. In the South and Midwest, there are more relatively young and healthy people dying of brain trauma or stroke, which makes them ideal donor candidates.
Some parts of the country have large concentrations of immigrants or racial and ethnic groups that “have never been fans of organ donations,” Mulligan said. They may be suspicious of the medical system, he said. They might fear, for example, that hospitals may prefer to take a patient’s organs rather than continue to provide care.
When Mulligan worked at the Mayo Clinic campus in Arizona, he help create culturally sensitive outreach programs to Hispanics and Native Americans who had previously shunned organ donation. In New Haven, he has done the same with African-Americans.
“Do we need to increase donations? Absolutely,” Mulligan said. “But we have to realize that we’re never going to make every single region the same.”
The laws and bureaucracies of states such as New York have also hampered organ donation efforts.
While many other states allow for easy online registration, New York mails out confirmation letters that must be answered with a return letter before people are entered into the donor registry, said Shaina Kaye, spokeswoman for the Albany-based OPO called the Center for Donation and Transplant.
New York is one of only four states that sets the age of consent for becoming a donor at 18, rather than 16, Kaye said, so donor programs lose out on the opportunity to reach new drivers as they apply for their learner’s permits. Two years later, the teenagers get their licenses in the mail and never have to say whether they want to be a donor.
Gilroy is skeptical that racial and ethnic differences among regions alone account for the great regional variations in donation rates. His study took a separate look at potential donors who were young and white and found their donations rates also varied by region.
“Some populations are happy to donate, and other populations are happy to receive organs and never donate,” he said.
Gilroy worries that the overseers of the nation’s organ donation system are putting too much of their efforts toward changing the ways organs are distributed to recipients, rather than on creating a greater supply of organs. Proposals to change distribution of livers are currently under discussion by the agencies that manage the transplant system.
Redistribution may keep some patients in areas with low numbers of donors from dying as they wait for an organ. But it also could keep patients in areas with high donation rates, like Kansas City, waiting longer for a transplant.
“We believe donation is the key,” Gilroy said. “You’ll save a lot more lives with more donations than with redistributing.”