Chairman Greenwood and members of the Subcommittee, I appreciate the opportunity to appear before you to discuss new initiatives for increasing organ donation. I am Dr. Robert Metzger, a transplant physician and Medical Director of the Organ Procurement Organization and kidney transplant program at Florida Hospital in Orlando. I am testifying today in my capacity as the in-coming Vice President/President-Elect of UNOS, the United Network for Organ Sharing, the organization contracted to manage the Organ Procurement and Transplantation Network.

ORGAN DONOR SHORTAGE

Over 81,000 patients are on the wait-list for transplantation in the United States today and more than 5000 will die this year without receiving a transplant. More startling is that almost 60% of those on the list today will die without receiving a transplant. Yet organs from deceased donors are recovered from less than 50% of actual, potential donors, resulting in the loss of thousands of life-saving transplants. Most of the small, annual 1-2% increase in the number of deceased donors has come from expanding the medical and social conditions previously used to eliminate potential donors, while the wait-list continues to grow at a rate of 12% annually.

UNOS CONSENT CONFERENCE

In late April, UNOS sponsored a national consensus conference, "Maximizing the Consent Process, From Research to Practice" in Orlando, Florida. Over 100 experts from the organ procurement and transplant community came together to address "best practices" for (1) training and maintaining recovery coordinators, (2) improving the consent process, (3) supporting the needs of the donor families, and (4) evaluating the impact of "first person consent" or "donor authorization". The recommendations from these work groups will soon be published and I will limit my discussion to those from the Work Group on "donor authorization" moderated by Helen Leslie, executive director of LifeNet OPO in Virginia and myself.

DONOR AUTHORIZATION

In 1968, the National Conference on Commissioners for Uniform State Laws drafted the Uniform Anatomical Gift Act (UAGA) that authorized anyone 18 years of age or more to "gift" any part of his body to take effect upon death and that this could not be rescinded without his consent by anyone. Over the next decade this was adopted by the legislatures of all 50 states. However, this was virtually ignored by all OPOs because of the small numbers of potential donors with legal donor documents and the difficulty in documenting their existence at the time of death. In 1995, the Center for Organ Recovery and Education (CORE), the OPO for western Pennsylvania and part of West Virginia, began accepting the donor document as legally binding. In the subsequent 7 years, they found that donation occurred 100% of the time when the donor document was available but only the usual 51% when consent from the family was utilized. The Work Group's recommendation was to develop an aggressive national effort to increase the recovery of donor organs by moving to an emphasis on the "donor authorization" process.

The Work Group then developed the following position:

1. The decedent's right to donate should take precedence in the donation process.

2. This should be accomplished in the framework of:

a. honoring the donor's wishes

b. respecting the needs of the recipient

c. continuing to support and care for the donor family.

3. The approach should provide:

a. a consistent level of support for the donor family

b. sensitivity to the needs of diverse populations

c. the achievement of an effective paradigm shift by hospital staff and donation specialists in the process for recovering organs.

An action agenda was developed to:

1. Create national synergy and momentum to:

a. enlist a broad-based coalition within the procurement/transplant arena and government agencies

b. seek allies from the general public and greater healthcare community

c. explore the need for UAGA revisions d. advance a supportive public relations strategy e. pursue "donor rights" legislation in all 50 states 2.

Promote donor registries as a vehicle for: a. a "national" donor card and depository b. "online", multiple access sites.

I am happy to report that in the short month following the conference, this proposal has been endorsed by the Executive Committee of the Association of Organ Procurement Organizations (AOPO), the Advisory Council on Organ Transplantation to the Secretary of Health and Human Services (ACOT), and is under discussion by the National Kidney Foundation, the Coalition on Donation, the American Society of Transplantation, and the American Society of Transplant Surgeons.

I am hopeful that over the next 2 years, this program could result in a significant increase in the number of our citizens willing to come forward and authorizing their "gift of life" to their fellow citizens in need.

Thank you.