How the Current Organ Transplant System Failed Patients and Providers

Background

To start the conversation, Nibhanupudy provided an overview of how organ transplantation used to function, how it currently functions, and the drawbacks of the new system.

“UNOS was born out of the transplant community in the early 80s and was officially enacted in 1984 after the National Organ Transplant Act as the organization that would contract with the federal government, the Organ Procurement and Transplant Network (OPTN),” shared Nibhanupudy.

He explained that, while UNOS initially began from members of the transplant community, in recent years, the organizational decisions have been driven by a small portion of the community on the executive board.

The most significant change to come about is the way they allocate resources. Nibhanupudy explained that, before changes in the past decade, organs were allocated regionally or locally. That means organs were shared between nearby states instead of across the country. Nibhanupudy noted, “with these allocation changes, UNOS was trying to push for a continuous sharing of organs throughout the country.”

While these allocation changes received much pushback from members of the transplant community, they continued to be implemented. “Whenever regional discussions and voting were held, most regions voted down the changes, but the board pushed them through anyway. So what has that left the transplant community with? It has left us with more travel for organs when it may not be necessary,” revealed Nibhanupudy.

“Now what's happening is a 500 mile continuous circle of all the programs within that 500 miles from the donor hospital. And the wait list essentially is a single wait list within those 500 miles,” he added.

Transportation Issues

The new allocation rules have significantly increased the travel necessary for organ transplants. Organ tracking and cost of travel have become significant issues in the organ transplant community.

Tracking Issues

While some organs can only survive on ice for a short time, others have a longer window for transplant. Those organs with a shorter window for transplant typically travel via private jet, which means tracking is not an issue. Other organs, such as kidneys, use commercial planes.

“Because kidneys can stay out of the body for 24 hours or even longer, they don't go by private jet. They go by commercial planes for long distances. For shorter distances, within about two or three hours, they'll go by courier transport, which is not an ambulance. It's just a van, an SUV, or something with a licensed courier. That’s where there are transportation issues now, which has become a huge problem because members of the transplant community warned UNOS that this was going to happen,” stressed Nibhanupudy.

For organs traveling via commercial planes, there are multiple considerations and issues. Many smaller cities do not have direct flights. Due to that, connecting flights have become a necessity, leading to longer travel times.

“Members of the transplant community have had organs miss the connection and stay in the holding area because nobody knew exactly where that was supposed to go. There have been situations where nobody knew exactly where the organ was until several hours later when it was found in holding. And again, these aren’t soybeans that can go whenever and wherever people want. These have a defined life span for the most part,” said Nibhanupudy.

Nibhanupudy suggests multiple different methods to track these organs going on commercial flights.

“The system needs better tracking by GPS. There are easy, cheap technologies now. A Tile only costs $20. An Apple Tag is $35, and an app can find, at any time, where that chip is. I know exactly where my package is for UPS, FedEx, and other delivery systems if I look on my app. And so that must be utilized for every one of these organs that is not on a private jet,” he advised.

He also shared a personal anecdote about his experiences. “I've had a kidney that was supposed to go to California and missed a flight in the middle of the country. Members of the transplant community were able to scramble and place it with one of the local programs there, so that was great,” disclosed Nibhanupudy.

Additionally, “two weeks ago, my organization had a kidney that went up to a program in South Carolina. They had their patient come in and ended up finding a medical issue with that patient. By the time they figured out the new medical issue, it had already been an extra 10–12 hours. That patient couldn't be transplanted. That kidney was wasted simply because it traveled all that way, sat there, and waited, and it's all because of this rule change,” he conceded.

With a limited number of organs available in the United States, losing or allowing them to remain outside the body for an extended time puts providers and patients at a disadvantage.

Cost of New Organ Allocation Rules

The financial burden of an organ transplant is significant and presents an additional barrier to care. The National Foundation for Transplants estimates that the overall costs of a heart transplant are $1,382,400. On average, patients must cover at least 20% of transplant costs, ranging from $69,400 to $276,480. In addition to the potential for lost organs, allocation guidelines have also driven up the cost of transplants.

According to Nibhanupudy, “organ acquisition cost has significantly increased because of all the transportation issues. These charter flights cost an extra $2,000 an hour. If I'm flying from here to Atlanta, it's about a 2.5 hour flight. The cost is not just those two and a half hours. The charter flights usually charge you for extra two hours for prep time. And the current charter company that my organization contracts with flies out of Gainesville. They must fly from Gainesville to here and then from here to Atlanta. Then the travel must be repeated in the reverse direction.”

“That time gets billed to the organ transplant program. And it always doesn't get reimbursed 100%. It's reimbursed at a Medicare ratio every three years or so. It makes the transplant programs put up more capital upfront for these transportation issues. Patients all have extra out-of-pocket costs because of transportation and lodging if they're from far away. Those are all things that every program has a different way of dealing with,” he added.

Proposed Solutions 

Nibhanupudy shared some proposed solutions with LifeScienceIntelligence. To address these issues, a multifaceted approach must be conducted.

Regulating Transportation

Nibhanupudy suggests a regulated or universal transportation system to help minimize hiccups in transportation.

“UNOS has always said transportation is not their problem, which in the past may have been okay, but now that they've been pushing this whole national continuous sharing, it is their problem because of these issues,” he explained. “There must be some national standard to create a network of vendors and carriers. Every OPO and donor service area fend for themselves now, and that’s why there is this large variation of who gets contracted and how they’re tracked. If there were some national standards and a national network, that would certainly improve transportation.”

Executive Board Changes

Beyond issues of regulation, Nibhanupudy — in addition to many other members of the transplant system — believes that changes to the UNOS executive board may be beneficial.

“The OPTN is the arm of HRSA that contracts with a company to create all the rules and oversee the allocation of organs. Currently, UNOS contracts with the OPTN. As it turns out, the executive board for UNOS is the same board for the OPTN. Clearly, there's a conflict of issues there,” he asserted.

Practically, this means that “if the executive board of UNOS wants to do something, there's nobody on the government side that can say, ‘this doesn't sound right,’ ‘this needs to change,’ or ‘let's hear these other perspectives.’”

Throughout the discussion with LifeSciencesIntelligence, Nibhanupudy shared multiple issues with the current transplant system and proposed solutions to address them. “There are other systems of sharing organs that have been proposed and could be utilized instead of just a one blanket fits all,” he concluded.

It is up to providers and healthcare professionals to propose practical solutions to the issues at hand and advocate for changes in the system.