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National Donor Memorial

The Organ Transplant Waiting List

In the United States, more than 84,000 men, women and children are waiting for organ transplants. Their struggle to live depends on a complex and technologically-advanced organ allocation system that links patients with organs donated by strangers.

Subjected to intense scrutiny by the federal government, the public, and the medical profession, no other aspect of modern medicine is more analyzed and debated. Such scrutiny is essential. Organ transplantation is built upon altruism and public trust. If anything shakes that trust, then everyone loses.

In 1984, the National Organ Transplant Act established the Organ Procurement and Transplant Network (OPTN), a national organ sharing system to guarantee, among other things, fairness in the allocation of organs for transplant. Since 1984, the nonprofit United Network for Organ Sharing (UNOS) located in Richmond, Virginia, has operated the OPTN, under a contract with the Division of Transplantation in the Department of Health and Human Services. UNOS maintains a central computer network containing the names of all patients waiting for kidney, heart, liver, lung, intestine, pancreas and multiple-organ transplants; the UNOS "Organ Center" is staffed 24 hours a day to respond to requests to list patients, change status of patients, and help coordinate the placement of organs.

Organ transplantation is built upon altruism and public trust. If anything shakes that trust, then everyone loses.

Patients on the waiting list are in end-stage organ failure and have been evaluated by a transplant physician at hospitals in the U.S. where organ transplants are performed. Policies that dictate organ allocation are created and revised through a consensus-building process that involves UNOS committees and a board of directors, all composed of transplant physicians, government officials, specialists in immunology and experts in organ donation, as well as donor families, transplant recipients and members of the general public. Any proposed changes to the organ allocation rules are openly debated and published for public comment before being implemented.

Specifics of waiting list rules, which can be seen at OPTN website, vary by organ. General principles, such as a patient's medical urgency, blood, tissue and size match with the donor, time on the waiting list and proximity to the donor, guide the distribution of organs. Under certain circumstance, special allowances are made for children. For example, children under age 11 who need kidneys are automatically assigned additional points. Factors such as a patient's income, celebrity status, and race or ethnic background play no role in determining allocation of organs.

Contrary to popular belief, waiting on the list for a transplant is not like taking a number at the deli counter and waiting for your turn to order. In some respects, even the word "list" is misleading; the list is really a giant pool of patients. There is no ranking or patient order until there is a donor, because each donor's blood type, size and genetic characteristics are different. Therefore, when a donor is entered into the national computer system, the patients that match that donor, and therefore the "list," is different each time.

The other major guiding principal in organ allocation is: local patients first. The country is divided into 11 geographic regions, each served by a federally-designated organ procurement organization (OPO), which is responsible for coordinating all organ donations. With the exception of perfectly matched kidneys and the most urgent liver patients, first priority goes to patients at transplant hospitals located in the region served by the OPO. Next in priority are patients in areas served by nearby OPOs; and finally, only if no patients in these communities can use the organ, it is offered to patients elsewhere in the U.S.

Contrary to the image of organs always crisscrossing the country, 80 percent of all organs are donated and used in the same geographic area.

Such locally oriented allocation makes medical sense because less time between donor and recipient usually means more chance of a successful transplant as well as fewer logistical complications that could threaten the viability of the organ. Experience has shown, furthermore, that people are more likely to donate organs if they know that other people in their own community will benefit.

Thus, contrary to the image of organs always crisscrossing the country, 80 percent of all organs are donated and used in the same geographic area.

Of course, debates about organ allocation will continue as long as there is such a large gap between patients who need transplants and the number of organs donated. Who, for example, should get priority, people who are the sickest or those who have the greatest chance of surviving and achieving a long life? And what is the significance, if any, of someone's personal behavior? Should a much-needed heart go to a person who was a heavy smoker or a liver to someone who has suffered from alcoholism? These are difficult questions for which there are no easy answers.

The National Organ Transplant Act of 1984 also created the Scientific Registry of Transplant Recipients, which is now maintained at the University of Michigan, also under contract to the Division of Transplantation. Through the Scientific Registry, patients can obtain hospital-specific information about transplant survival rates as well as the performance of regional OPOs. Because this registry extends back more than twenty years and has detailed records of treatments and outcomes for more than 200,000 organ recipients, transplantation is by far the best-documented aspect of modern medicine.

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