Recently, media reported that one-third of the nearly 100,000 patients awaiting organ transplants in the U.S. are inactive. This is true, but the interpretation that these patients are inappropriate or ineligible for transplantation, and that this practice has been encouraged to create an inflated demand for organs, needs a response.
As one of its responsibilities under its contract with the Health Resources and Services Administration, the United Network for Organ Sharing (UNOS) operates the national Organ Procurement and Transplantation Network (OPTN) waiting list. Persons with organ failure are added to that list only when one of the country’s 250 transplant centers determines they need a transplant. The “active” list includes only people determined by their doctors to be ready for transplantation. “Inactive” patients are not considered for an organ. However, being “inactive” does not mean the individual is an inappropriate candidate or ineligible to ever receive an organ.
Doctors use the inactive status as a way to manage the waiting list to ensure each patient is ready for transplant the moment an organ is offered. If a patient is too sick currently, the doctor lists that patient as inactive while attempting to restore the patient’s health to make transplantation possible. Sadly, such individuals sometimes die while still listed as inactive. But many patients inactivated during alternative treatments return to the active list and are transplanted successfully.
More than one-fifth of inactive liver and heart candidates are inactive because they are temporarily too well for a transplant, yet they have end-stage liver or heart disease and will likely need a transplant eventually. A fourth of inactive kidney-pancreas candidates are inactive because their doctors have determined they are temporarily too sick for a transplant.
OPTN policy for kidney allocation depends largely upon the length of time a person has been listed. Several years ago, OPTN policies were changed to allow waiting time accumulation for “inactive” patients. This was done to not penalize patients for conditions outside of their control. As waiting times have increased, some transplant centers initially screen patients for transplant, add them to the list, but postpone full medical evaluations until they are more likely to receive an organ. This saves having to repeat many of the tests at a later point.
Determining that a particular patient should no longer be listed at all also is a medical decision, which physicians do not make lightly, or without fully understanding the patient’s medical condition. Delisted patients lose all their waiting time, and it is utterly devastating to them and their families.
UNOS reports the total number of patients on the list because every one of them needs a transplant or their doctors would not have listed them. Reporting the number of “active” candidates at any given time would not change the fact that there is a severe organ shortage.
Therefore, the transplant community has no incentive to “inflate” the waiting list to “market” the need for organ donations. That need is real, and immediate. Suggesting otherwise gravely endangers the lives of tens of thousands of desperately needy Americans.