Long waiting lists and kidneys wasted: The state of organ transplants and how it affects Missouri and Kansas

When Carthesa Hutson’s son, Chris, finally got around to getting his driver’s license he was almost 19.

She remembers being at the DMV with him when he paused on the application question about becoming an organ donor and looked to her. She told him to follow his heart.

“He said, ‘Well, if I’m not here, I would like somebody else to have the opportunity to live,’” Hutson said.

Neither of them knew that in just a few weeks Chris’ family would have to fulfill that wish. 

Eight years ago this May, only a couple months after Chris checked the box to be an organ donor, he was murdered in a road-rage shooting in south Kansas City. Chris’ organs went to seven people on waiting lists.

Gary Dixon of Independence, who was in the hospital being kept alive by a cardiac pump, got Chris’ heart. He often talks about the young man who gave it to him.

“I want to make sure that nobody forgets who little Chris is,” Dixon said. “He saved seven people that day. … What happened to him should not have happened, but look what he did.”

There are many more stories about organ donations that saved lives. But critics of the country’s sluggish organ transplantation system say there should be many more.

Last year, surgeons in the United States transplanted 48,000 organs, more than ever before. But 105,000 people remain on organ waiting lists nationwide, including 1,998 at transplant hospitals in Missouri and 502 at hospitals in Kansas. The majority — 87% — are waiting for kidneys.

Critics point to the large gap between supply and demand as evidence that the system is broken. They argue that inefficiencies and misaligned incentives mean some potential donors are never considered, while other organs are recovered from deceased donors, yet not used.

Changes in recent years — including a 2023 federal law that ended monopoly control of the transplant system — are aimed at fixing problems. But the fact remains that people are still waiting for months or years for kidneys, hearts, livers and other organs.

And every day, an average of 17 people die while on a transplant waiting list.

Struggle for equity

Since doctors in Boston completed the first successful kidney transplant in 1954, there has always been a greater need for organs than can be met with available donations. And the system has constantly struggled to develop equitable allocation protocols that fairly prioritize potential organ recipients.

In 1984, the federal government stepped in to oversee the system. Legislation established the Organ Procurement and Transplantation Network. It serves as the framework around the country’s 251 transplant hospitals, 138 laboratories and 55 organ procurement organizations (OPOs). 

Under that system, every transplant hospital has waiting lists of patients who need organs, and every donated organ is assigned a list of possible recipients. Organs are allocated based on factors like how good a match the patient is for the organ, how sick they are and how far they are from the donated organ.

That 1984 law established a national computer database to match patients to donated organs based on an objective algorithm. And every transplant center has its own waiting lists and criteria for adding patients. 

Since there aren’t enough organs to go around, organ allocation is one of the few areas of medicine where doctors have to choose which patients are more worthy of treatment.

“If you’re going to give an organ and save a person who’s going to live for one year,” said Ryan Pferdehirt, an ethicist with the Center for Practical Bioethics in Kansas City, “or — everything being equal — give an organ to a patient who’s going to live for 20 years, you would probably want to go with a 20-year option.”

Over the years, however, the organ allocation system has developed obstacles that make it less than objective.

Bias keeps some people off transplant lists. Black patients, for example, are three times more likely than white patients to have kidney failure, but much less likely to be placed on kidney transplant waiting lists. And women, according to some studies, are less likely than men to receive a liver transplant.

Access is another issue. In rural areas, for instance, getting to a transplant center can be difficult. And sometimes a patient is in a part of the country where fewer organs are donated, or they go to a transplant center with strict standards about which organs to accept. Both scenarios could mean fewer organs to go around.

Finally, for a patient without insurance, the cost of a transplant operation alone could be a barrier. According to the American Transplant Foundation, which offers financial assistance and other support to people who need transplants, a heart transplant could cost more than $1.6 million, a liver $878,000 and a kidney transplant more than $442,000.

Reforming the system

Critics believe that access to organs has also been limited in part by the way the transplantation system was set up four decades ago. Until recently, a single nonprofit — the United Network for Organ Sharing (UNOS) — held the sole government contract to manage all aspects of the system.

But criticism that transplant waiting lists were only continuing to grow under UNOS led Congress to pass legislation in 2023 to break the single government contract into pieces. Last fall, the Health Resources and Services Administration began awarding those contracts to a list of new vendors for various duties related to operating the network. 

In a statement announcing the new contracts, then-Health and Human Services Secretary Xavier Becerra said the transplant network had been “mired in monopoly.”

“With the life of more than 100,000 Americans at stake,” the statement said, “no organ donated for transplantation should go to waste.”

According to government data, almost 28% of kidneys recovered from deceased donors in 2023 were not transplanted. That’s up from a rate of 26.6% in 2022 and 18.7% in 2012.

UNOS, which has a contract with the federal government that is set to expire in June but could be renewed, has defended its work. It also is calling for changes to improve the system, including allowing kidneys shipped on commercial flights to travel in the passenger cabin.

That trend of kidneys — the most in-demand organ for transplants — going unused is another reason there has been so much attention in recent years on changing the system. 

Ongoing reforms include federal regulators taking aim at how OPOs — the nonprofits charged with accepting donated organs and shepherding them to transplant patients — are evaluated. 

Each region of the country has one OPO — there are more than 50. When someone dies under circumstances that might make their organs suitable for donation, it’s the OPO’s job to decide whether an organ is worth pursuing and talk to the donor’s relatives if it is. 

OPOs also find appropriate recipients for the organs, make offers to transplant hospitals and see that accepted organs make it to the patients who are waiting.

Although it is increasingly common for people to agree to donate their organs after death, most deaths don’t lend themselves to organ donation. Organs might be diseased, a donor might be too old or their organs might have been damaged in the dying process.

In the year beginning July 1, 2023, 19,187 hospital deaths were referred to the Midwest Transplant Network, the OPO that serves Kansas and western Missouri. Of those, 365 became donors, resulting in 482 kidney transplants, 221 liver transplants, 150 lung transplants and 100 heart transplants. There were 24 pancreas transplants during the period, while intestines were transplanted twice.

Midwest Transplant Network’s procurement rates are among the best in the country. For the first time last year, the organization facilitated more than 1,000 annual transplants. 

But overall, OPOs have faced criticism for not getting more organs into the system. Some people argue they were leaving too many potential donor organs behind, not even exploring whether they might be usable.

That’s why the Centers for Medicare and Medicaid Services, the government agency that certifies OPOs, in 2022 changed the measures it uses to rate them. Now OPOs are judged not only on the number of organs they procure, but also on the number that are actually transplanted.

The Association of Organ Procurement Organizations (AOPO) believes that the new rating system unfairly holds OPOs accountable for something they have no control over. Ultimately, it’s up to the transplant hospital to decide which organs they will accept.

The association argues that the new metrics are adding to the number of donated organs going unused because OPOs now feel pressure to procure organs that are less likely to be accepted. According to the AOPO, 11,000 of the 54,000 organs recovered for donation in 2023 were not used. Most of those that ended up being thrown out were kidneys.

In 2024, 9,266 kidneys — an 83% increase in five years — were not used, the group said.

Midwest Transplant Network, which reported $82.9 million in 2023 revenue, is in the top 25% of OPOs for both donation and transplant rates, meaning it falls in the top category and is not in danger of decertification. But the AOPO estimates that 42% of the nation’s OPOs are in danger of losing certification in 2026 when CMS applies the new metrics. 

No plans have been announced for how those OPOs’ functions would be handled if they are decertified. Shutting them down could negatively affect organ procurement numbers. Dorrie Dils, AOPO president, said she wants regulators to remember the people relying on the work that OPOs are doing.

“It’s not just about numbers and measures and all of those things,” Dils said, “but there are real humans on both sides.”

OPOs say they face strong headwinds in getting transplant centers to accept more organs. That’s in part because hospitals have very different incentives than OPOs. The Centers for Medicare and Medicaid Services rates hospitals based at least in part on patient outcomes, so they have every incentive to be selective in the organs they accept.

“We’re pushing over here and we’re asking the transplant centers to pull,” said Jan Finn, Midwest Transplant Network’s president and CEO. “We’re saying, ‘Take these organs. We’ve got them available. We have donor families that have allowed them to be transplanted in someone else.” 

But the hospitals are more likely to proceed cautiously.

Better than they are now

Kansas City only has four hospitals that do transplants: the University of Kansas Medical Center, St. Luke’s Hospital of Kansas City, Research Medical Center and Children’s Mercy Hospital, where kidney and liver programs have been on pause since March “due to surgical staffing issues,” according to the hospital’s website. None of Kansas City’s transplant centers have lung programs.

The relatively small number of transplant centers in the area combined with changes in the distance organs can be allocated mean that about 80% of the organs Midwest Transplant Network receives are sent to other parts of the country. Before 2019, only about 20% of organs donated left the region, Finn said.

“That’s a lot more players that we are working with,” she said, “that we have to understand and know how to provide the information to them.”

Kidneys can go almost anywhere in the country because they can survive outside the body longer. Hearts and livers need to be transplanted more quickly.

The coordination and timing are critical when a donor heart comes through, said Dr. Jessica Heimes, a cardiothoracic surgeon who does heart transplants at St. Luke’s Hospital. 

“Once we have a donor (operating room),” she said, “we actually plan things and time things so that when we walk back into this hospital with that organ, we are ready to sew that in … meaning the patient is asleep on the table.”

Typically hospitals have transplant teams, with doctors, social workers, nutritionists and coordinators, that decide which patients should be placed on their organ waiting lists.

St. Luke’s transplant team meets weekly to consider new patients and keep tabs on existing ones.

“We look at pretty much every facet of their life to make sure that they are an appropriate candidate,” Heimes said. 

When an organ becomes available, the transplant surgeon makes the call about whether it’s a good match for their patient.

Dr. Timothy Schmitt, director of transplantation at the University of Kansas Health System, the Kansas City area’s largest transplant hospital, said doctors need patients to be healthy enough to survive a transplant surgery. And want organs to be the best match and the healthiest they can get.

“You want that organ to make (the patient) better than what they are now,” Schmitt said. 

Although transplant hospitals have jurisdiction over their patients’ care, they are not immune from feeling the effects of changes to the transplant system.

Since rules about organ allocation were amended a few years ago to prioritize sicker patients further away rather than finding recipients nearby, Schmitt said his patients have had to wait longer and often are sicker by the time they finally get a transplant.

Treating sicker patients increases costs. So does traveling greater distances to get organs, he said.

“We had to fly an organ in from Colorado — I think it costs like $30,000 just to fly the organ in,” Schmitt said. “If it was in our own neighborhood, it would be a lot easier to drive an ambulance over to grab it.”

Dr. Alice Crane, an abdominal transplant surgeon at Research Medical Center, said she’s already seen the effects of the new OPO-rating system. In an effort to get more transplants to hospitals, she said, she’s noticed some OPOs are more often bypassing the ranked list of eligible recipients when making organ offers.

The New York Times published an investigation in February that highlighted the trend, finding that out-of-sequence offers are happening 20% of the time, much more than just a few years earlier.

Crane said she hasn’t seen the practice locally, but it has happened when patients have been on the list for organs coming from OPOs in other parts of the country.

“It’s a very complicated process and it undergoes constant revision,” Crane said. “And every time … we tried to correct it, sometimes it goes in a direction we don’t expect.”

Crane said she holds out hope that new transplant technology and techniques will make more organs available for patients on waiting lists. She encourages her patients in need of kidneys to reach out on social media and through other networks to try to find a living donor. In 2024, 7,030 people became living donors, meaning they donated a whole kidney, a segment of their liver or a uterus.

But in truth, Crane said, real progress will finally come when preventive health care can help patients avoid organ failure in the first place. Diabetes is the most common reason people end up in kidney failure, she said, and that can be prevented or treated early.

“As much as I love doing (transplants), I wish I didn’t have to,” Crane said. “We all want out of a job. That would be a very good thing for society.”

This article first appeared on Beacon: Kansas City and is republished here under a Creative Commons Attribution-NoDerivatives 4.0 International License.