Navigating the US Organ Transplant Waiting List

While patience and luck are often associated with getting off the organ transplant waiting list, experts say patients can also actively navigate the U.S. system to improve their chances. Understanding the nuances of the transplant process and knowing what questions to ask can be crucial.

"I had to ask a lot of questions to figure out what it was that I could do to move the needle," said Katherine Screws of Phoenix, who received a rare intestine transplant after joining the waiting list at multiple hospitals. For many, this active approach can make a difference.

There are approximately 100,000 people on the U.S. transplant waiting list at any given time, with the majority needing a kidney. Despite a record number of over 49,000 transplants performed in the U.S. last year, driven by increases in deceased donor donations, demand still outstrips supply. Different transplant hospitals also have varying criteria for accepting patients onto their lists.

This variation means that a patient who is denied at one center might be successfully transplanted at another. Each transplant program maintains its own waiting list, which is connected to a national automated matching system. When viable organs are recovered by organ procurement organizations (OPOs), their information is entered into this system, generating lists of potential matches across multiple hospitals. Transplant teams must then decide whether to accept an offered organ, with the offer moving to the next candidate if it's not a suitable match.

Some hospitals are more conservative in their organ acceptance criteria. Research indicates a significant variation, with one study of kidney transplants finding up to a 16-fold difference in how quickly a patient might receive a transplant at one center compared to another. This can be influenced by factors such as surgeon experience with complex organs or those from older or sicker donors, which can still be a better alternative than remaining on dialysis.

Accessing Transplant Data

To help patients make informed decisions, the Scientific Registry of Transplant Recipients (SRTR) database now offers patient-friendly tools. While traditionally used by experts, these resources aim to empower potential recipients. These tools allow individuals to compare transplant centers nationwide based on various metrics, including how quickly patients receive transplants, survival rates while on the waiting list, and the long-term survival of the transplanted organ.

For specific organs, such as kidneys, personalized decision guides are available. These guides allow users to input demographic and medical information, including factors like blood type and diabetes, to compare outcomes for patients with similar profiles. This can help patients understand if certain centers have more experience with older adults or individuals with specific chronic illnesses.

The SRTR data can also inform discussions with transplant programs. Patients are encouraged to ask why certain centers might perform transplants more quickly than others. Such conversations can sometimes prompt transplant programs to consider accepting offers more aggressively.

While not all patients can travel, utilizing these resources can help them engage more effectively with their chosen transplant programs and potentially increase their opportunities for a successful transplant. Some patients, like Katherine Screws, have found success by being listed at both a local hospital and a higher-volume program further away.