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Spring 1994Volume 1, Number 1 |
Organ transplantation in the United States has advanced rapidly over the past 40 years, from the initial experiments of the 1950s and 1960s through the medical, surgical and immunological breakthroughs of the 1980s and 1990s. Results from increasingly complex transplant operations continue to improve, and the survival rates of patients and of transplanted organs are rising.
Until the early 1980s only a few medical centers performed transplants, and organ allocation was often handled on a local or regional basis. However, as transplant outcomes improved and as more patients became transplant candidates, the federal government recognized the need for a centralized, national organ distribution system assuring all patients an equal chance to receive donor organs. With passage of the 1984 National Organ Transplant Act, a national Organ Procurement and Transplantation Network (OPTN) was established to develop a system for the equitable allocation of donated organs. In addition, a national Scientific Registry was designed to compile and analyze data on all transplants performed and to suggest improvements to benefit transplant patients.
In 1986 the United Network for Organ Sharing (UNOS) based in Richmond, VA, was awarded the federal contract to operate the national OPTN. In 1987 UNOS was also awarded the contract to administer the U.S. Scientific Registry for Organ Transplantation. UNOS began performing these contracted tasks on October 1, 1987. In addition to its specific duties, UNOS facilitates communication and cooperation among all members of the transplant community. As of October 1, 1993, the institutional members of UNOS included 273 transplant centers, 51 independent organ procurement organizations and 50 independent tissue typing laboratories. UNOS membership also includes transplant consortia, professional and voluntary health organizations and members of the general public.
UNOS has established 11 geographic regions to facilitate organ sharing and administrative efforts throughout the United States. UNOS is governed by a 33-member board of directors representing each region and each category of membership (eg, organ procurement organizations, medical/scientific organizations, etc.). The board is supported by national committees with specific responsibilities for histocompatibility, membership and professional standards, organ procurement and distribution, thoracic organ transplantation, pediatrics, ethics patient affairs, and others. All board and committee members volunteer their time and effort to UNOS activities.
Organ Procurement and Transplantation Network (OPTN)
OPTN policies are developed by the UNOS membership rather than by individual institutions. Each member institution in a UNOS region selects a representative and an alternate to attend regional membership meetings. Each region then elects a regional councillor and an associate regional councillor. The regional councillor sits on the UNOS Board of Directors and serves as a liaison between the region and the Board. Through input derived from regional membership meetings and forums, regional and national committee meetings, and Board activity, broad perspective and consensus are achieved.
UNOS has established membership criteria and professional standards for all U.S. transplant centers, organ procurement organizations and histocompatibility laboratories involved in transplantation. This ensures that minimum standards are met and that all patients receive high quality care. As administrator of the OPTN, UNOS has formulated policies to ensure equitable organ allocation to patients who are registered on the national patient waiting list. These policies forbid favoritism based on political influence, race, sex, or financial status, relying instead on sound medical and scientific criteria. The policies strive to balance the concerns of medical utility (optimizing patient outcome) and justice (emphasizing fairness and need) in every aspect of organ distribution.
UNOS requires testing of organ donors to prevent the spread of diseases such as AIDS to organ recipients and has formulated policies concerning transplantation of foreign nationals and the exportation and importation of donor organs. OPTN policies as a whole strive to increase access to organ transplants, decrease organ wastage and improve the outcomes of transplantation — important goals of the 1984 National Organ Transplant Act.
Through its Scientific Registry, UNOS collects data on all solid organ transplants in the United States. At present these include kidney, kidney-pancreas, liver, pancreas, heart, heart-lung, lung, and intestinal transplant procedures. Data collected include treatment, clinical factors, and demographic variables and their relation to outcome in the form of graft and patient survivals. Survival data are stratified by such variables as first versus repeat transplants, degree of histocompatibility, recipient age and medical status. Survival data are collected on all patients until patient death or loss of the transplanted organ. Data are also collected on all organ donors, both living and cadaveric.
Scientific Registry data are often used to evaluate the effectiveness of existing OPTN allocation policies and to evaluate the need for new or revised policies. A current project that shows great promise is the creation of a computer model to predict the likely effects of changes in the allocation system. This project will employ data compiled by the Registry since October 1, 1987, to simulate probable scenarios and suggest those with the best outcomes.
UNOS publishes or contributes to a number of standard and special reports using Scientific Registry data. One of the most significant reports to date has been the 1991 Report of Center-Specific Graft and Patient Survival Rates, which UNOS prepared as a deliverable report under federal contract. The report lists transplant statistics and graft and patient survival rates for every U.S. transplant program performing transplants between October 1, 1987, and December 31, 1989. In addition, the report calculates expected graft and patient survival rates based on a number of variables and compares each program's expected with its actual survival rates. The report demonstrated that the vast majority of programs achieved outcomes equal to or better than their expected rates.
Equally valuable is UNOS' annual report of statistical data, which includes demographic breakdowns on donors, recipients, and patients on the waiting list, as well as graft and patient survival rates, median waiting times, deaths on the waiting list, organ procurement organization (OPO) and transplant center activity and cadaveric organ disposition data. Narrative chapters focus on "Data Systems and Research in Transplantation," "Current Issues," "Trends in Organ Transplantation," and other topics.
UNOS is currently awaiting reauthorization of the National Organ Transplant Act. Although the House has passed its version of the Act, the Senate has not yet voted upon its version. Once the Senate version is passed, the Senate Labor and Human Resources Committee and the House Energy and Commerce Committee will draw up compromise legislation. This compromise legislation will then be brought before the House and Senate for vote. The legislation is expected to be approved in early 1994. Provisions of the proposed legislation with the greatest impact on UNOS include the following:
The proposed rule-making process has been delayed for more than six years. The Omnibus Budget Reconciliation Act of 1986 called for all transplant centers to be members of the OPTN and to abide by its rules for Medicare eligibility. In December 1989 a Federal Register notice said that the Secretary of Health and Human Services must approve OPTN rules before they can be binding, and that the Secretary would publish the approved rules in the Federal Register. Also, under legislation called for by the Senate, the General Accounting Office (GAO) would conduct a study to make recommendations to Congress regarding the composition of the boards of directors of OPOs and the OPTN, as well as the effect of the Organ Transplant Program Reauthorization Act of 1993 on the composition and functioning of these boards. The GAO would also study the subject of foreign national transplants in the U.S. and determine the effect of the reauthorization act on improving the equitable allocation of organs nationwide.
Despite the accomplishments of UNOS in organizing the transplant community and developing transplant policy, an enormous amount of work remains. UNOS will rely on the cooperation of its members to ensure that the optimal number of organ transplants takes place and that patient equity is achieved.
Douglas J. Norman, MD, is Professor of Medicine and Director, Medical Transplantation Program, Oregon Health Sciences University Hospital; and President, United Network for Organ Sharing.
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