The Annenberg Washington Program first examined the intrinsic link between communications and organ and tissue transplantation in its 1989 report, Matching Needs, Saving Lives: Building a Comprehensive Network for Transplantation and Biomedical Research. The report was based on more than a year of research and interviews with transplant recipients, people on the organ waiting lists, and donor families as well as medical professionals and leaders of both organ and tissue transplant-related institutions. In the report, Annenberg Senior Fellow Joel L. Swerdlow argued: "During the past decade, communications technolo gies have developed alongside medical technologies, but so far we have not fully applied our powerful communications capabilities to the enormous potential of transplantation."
The report recommended, among other policy options:
Transplant patients, donor families, and many medical professionals welcomed the report, but it provoked controversy among more than a few transplant institutions. Some organizations opposed linkage of organ and tissue trans plantation and feared the report's call for exploring alternatives to the existing consent process and for greater involvement by the government and the public.
The Program joined the American Medical Association (AMA) and the Annenberg Center for Health Sciences at the Eisenhower Medical Center to provide a forum for debating the report's recommendations. In April 1990, the AMA's and Annenberg Center's prestigious national conference series, Medi cine for the 21st Century, focused on Transplantation and Communications in the '90s and Beyond. The conference provided an unprecedented opportu nity for physicians, surgeons and other transplant professionals, patients, donor families, ethicists, attorneys, communications and computer experts, and mem bers of the press to address the role of communications in expanding the avail ability of transplantation. A Consensus Report, issued at the conclusion of the conference, reflected the participants' recommendations.
Following the Medicine for the 21st Century conference, the Program sought other ways to expand and enhance the dialogue over transplant communi cations. Annenberg Senior Fellows Swerdlow and Cate published "Why Transplants Don't Happen" in the October 1990 Atlantic and "Lifesaving Connections--Communications, Coordination, and Transplantation" in the December 1990 Transplantation. Cate's address on legal and ethical issues in organ dona tion to the Medicine for the 21st Century conference was published in the Fall 1990 Medical Staff Counselor, a professional journal for hospital administrators and attorneys. In 1991, Cate and medical law scholar Alexander M. Capron wrote "Death and Organ Donation" in Matthew Bender's authoritative Treatise on Health Care Law.
The following spring, the Program and the United Network for Organ Sharing (UNOS), operator of the national Organ Procurement and Transplantation Network, published the Transplantation White Paper by Annenberg Senior Fellow Cate and Susan S. Laudicina, Senior Research Associate with the Inter governmental Health Policy Project at George Washington University. The White Paper was an innovative effort to provide the media, government officials, and the public with current statistical information on transplantation, including the number of people waiting for organs, average time on the waiting list, sur vival rates of transplant procedures, cost of transplantation, and reimbursement practices.
In the introduction to the White Paper, Director Newton N. Minow and James S. Wolf, President of UNOS and a transplant surgeon at Northwestern University, highlighted the vital roles of communications in transplantation:
Innovative communications technologies link hospitals and organ procurement organizations with the central organ registry, operat ed by the United Network for Organ Sharing. They make possible the coordination and sharing of life-giving organs and tissues be tween people a continent apart. But the most important role of communications in transplantation is to inform and educate mil lions of Americans about the opportunity for saving lives through donation.
In addition to sponsoring publications, the Program sought to facilitate the im proved use of communications in organ and tissue transplantation through a series of forums, at which the diverse groups affected by transplantation could meet and talk on neutral, common ground. In October 1990, the Program joined The Partnership for Organ Donation, Inc., to sponsor Solving the Donor Shortage by Meeting Family Needs: A Communications Model. The Consensus Report from that meeting outlined key issues affecting communi cations with families about death and organ and tissue donation. The report stressed the importance of sensitive communications with the families of all patients and proper training for hospital and organ procurement organization personnel. Among the report's recommendations:
For two days, 13 leading transplant professionals, health policy analysts, researchers, economists, and communications experts met with Dr. Evans and Annenberg Fellow Barbara A. Gill, who moderated the roundtable, to discuss the study's findings and identify its key policy implications. Their findings, published as a Working Group Statement, helped to highlight the study's conclu sions that transplantation is a demonstrated, cost-effective means of saving and improving lives, but that the availability of transplantation is seriously ham pered by the shortage of organs and by the funding policies of both private and government health insurance programs.
Finally, the Program has promoted the participation of its Fellows in the com munications activities of national transplant-related organizations. Annenberg Fellows are regular speakers at national transplant conferences and participate on the boards of transplant organizations. The Program is particularly proud to have served as a founding member of the Coalition on Donation, a not-for- profit organization that works with more than 50 transplant institutions to help coordinate national campaigns to increase organ donation. The Coalition, started and chaired by Dr. Wolf, has developed and placed more than $33 million in transplant-related advertising. The Coalition represents the growing recognition by the transplant community of the significant role of communica tions.
Many of the recommendations in Matching Needs, Saving Lives have been embraced by both public and private organizations. Illinois, Louisiana, Missouri, and other states have implemented electronic registries of organ donors. In the first two years of the Illinois program, more than a million people signed up to donate. Holland, Hong Kong, and the United Kingdom have begun nationwide registries. The State of Pennsylvania has passed a law designed to test whether modest financial incentives will facilitate organ donation. The law authorizes payments of up to $3,000 per donor to defray hospital and funeral home charg es incurred prior to the donor's death.
UNOS has expanded its data collection and dissemination efforts, and now is a reliable source of up-to-the-minute information on transplantation for trans plant professionals, researchers, the media, and the public. The Division of Organ Transplantation, under Director Judy Braslow, has assumed a visible, proactive role in the transplant community and has become a powerful advo cate for efficient, effective, and equitable transplant policies. Along with UNOS, the Division hosts an annual meeting and distributes information that makes the transplant process more open and inclusive than ever before. Patients and donor families have found new recognition from the Surgeon General and the Division of Organ Transplantation, through the Transplant Recipients International Organization, and on UNOS and organ procurement association boards. The federal government has imposed new regulations on tissue and organ procurement and handling, and on the operation and gover nance of procurement organizations. Throughout the transplant community today, effective, consistent communications are increasingly the rule, not the exception.
These and other steps have accomplished much, but the organ shortage has worsened. The medical success of transplantation, changes in seatbelt and motorcycle helmet laws that have thankfully reduced the number of potential donors, new pressures on health care providers, and public concerns--rational and irrational--have combined to expand the list of people waiting for organs to more than 40,000 names. These developments only heighten the impor tance of communications, particularly with the public at large, and of proper communications training for the medical professionals who deal with the public in all phases of health care. They also focus attention on the continuing need for a national donor registry. Fortunately, the many improvements in communications in the transplant community during the past six years increase the likelihood that the additional steps necessary to guarantee the availability and fairness of transplantation will be taken.