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Transplant Recipients International Organization, Inc. Finds Fault With Revisions To National Organ Transplant Act

Contact: TRIO, Inc.
202/293-0980

Washington, D.C., Sept. 22, 1999 - A hearing was held today to discuss provisions of a bill sponsored by Congressman Michael Bilirakis of Florida. This bill seeks to undermine efforts by the U.S. Department of Health and Human Services (DHHS) to make the system less fair to patients and disregards the recommendations made in a congressionally mandated study by the Institute of Medicine (IOM). Transplant Recipients International Organization, Inc. (TRIO), which has long supported federal oversight of the nation's transplant system on behalf of patients and their families, has major concerns.

According to Rep. Bilirakis (R-Fla), who chairs the subcommittee, this bill is intended to "reauthorize the National Organ Transplant Act (NOTA) and promote efforts to increase the supply of organs available to transplantation." In addition, the bill provides grants to help pay travel and other expenses associated with living donation.

"The intent of the National Organ Transplant Act of 1984 is lost with H.R. 2418. It no longer is a law that seeks to ensure the fair and equitable distribution of organs and that provides for appropriate government oversight of the system on behalf of patients. Instead, it seeks to place power in the hands of transplant centers with total disregard for what is in the best interests of patients and the general public," said Bruce Weir, president of TRIO.

Among TRIO's concerns with H.R. 2418 are:

• It excludes patient participation in the Organ Procurement and Transplantation Network (OPTN) and from public policy decisions that affect patients' lives.
• It makes impossible any competitive bid on the OPTN contract now held by the United Network for Organ Sharing (UNOS).
• It minimizes the authority of the U.S. Secretary of Health over the nation's transplant system.

TRIO has strongly supported the "Final Rule" published April 1998 that aims to make the system more fair for patients. Last October, Congress imposed a one-year moratorium on the Rule, which expires Oct. 21, and called for the IOM to study its impact. The IOM report, released in July and applauded by TRIO, included five recommendations, including broader sharing of organs and greater government oversight.

"This bill disregards the objectives outlined in the HHS Final Rule and totally ignores the thoughtful and objective deliberations of the IOM," said Bruce Weir, President of TRIO.

Transplant Recipients International Organization, Inc., founded in 1983, is an independent, not- for-profit organization committed to improving the quality of life of transplant candidates, recipients, their families and the families of organ and tissue donors. With more than 4,000 members and nearly 50 chapters internationally, TRIO works to increase awareness about the need to donate organs and tissues, support and educate transplant candidates, recipients, donors and their families, as well as to advocate on their behalf.

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