Date: Monday, December 15, 1997
FOR IMMEDIATE RELEASE
Contacts: HRSA Press Office (301) 443-3376
HCFA Press Office (202) 690-6145

CLINTON ADMINISTRATION LAUNCHES NATIONAL ORGAN AND TISSUE DONATION INITIATIVE

Saying that rapid and substantial increases can be made in organ donation and transplantation, Vice President Al Gore and HHS Secretary Donna E. Shalala today launched a National Organ and Tissue Donation Initiative aimed at reducing the number of Americans who die each year while waiting for an organ transplant.

"Too often families choose not to donate simply because they haven't had a discussion to determine their loved one's wishes," Vice President Gore said. "We want this initiative to encourage more families to have these dialogues to understand their loved ones' wishes and help save lives."

"Organ transplant techniques today are saving and improving thousands of lives every year, but not enough organs are available to help everyone in need, and more Americans are dying while awaiting an organ transplant," Secretary Shalala said. "We are missing literally thousands of opportunities for donation every year. We need to do better."

About 4,000 Americans died in 1996 while awaiting an organ transplant, up from about 1,500 in 1988.

The initiative builds on more than a decade of experience gained from government, private and volunteer efforts. Focusing on known barriers to donation, it will:

- Create a broad national partnership of public, private and volunteer organizations to encourage Americans to agree to organ and tissue donation. The partnership will emphasize the need to share personal decisions on organ donation with one's family.

- Work with health care providers, consumers and physicians to ensure that deaths are reported to organ procurement organizations (OPOs) whenever there is potential for donation.

- Learn more about what works to bring about donation, through research and evaluation, including an HHS conference on best practices next spring.

Among the partner organizations joining the new effort are the American Medical Association and the American Academy of Family Physicians, which will encourage physicians to make donation materials available in their offices and discuss donation with patients; the American Bar Association, which will encourage members to discuss donation wishes during the preparation of wills and estate planning; the American Association of Health Plans, which will encourage plans to provide members with educational materials; the U.S. Chamber of Commerce and the Washington Business Group on Health, which will help the nation's business community with outreach to employees; and the American Red Cross, which will use its nationwide community network to expand on its current public awareness and education activities to increase organ and tissue donation. More than a dozen other groups have also already agreed to help reach particular audiences.

The Vice President also announced new joint efforts with the national Coalition on Donation. Coalition materials will be used throughout the initiative, including the toll-free information hot line, 1-888-90-SHARE. And the initiative will incorporate the "Share Your Life - Share Your Decision"sm message developed by the Coalition and the Advertising Council.

"This is a message that all Americans need to hear and understand," Secretary Shalala said. "Just signing a donor card isn't enough. You must tell your family. If we should die suddenly, it is our families who must speak for us on organ donation. And that decision will be much easier for them if they know our wishes."

A Gallup study has indicated that nearly all Americans would consent to donate their loved ones' organs if they knew beforehand that this was the individual's choice -- but just half as many would consent if they did not know the individual's choice. Only about half of Americans who want to donate have told their families.

As part of the initiative, HHS today also announced proposed Medicare regulations to ensure that hospitals notify an organ procurement organization (OPO) of those deaths that could potentially result in organ donation. HHS will work with providers, consumers, the organ and tissue transplant community and all other interested parties to develop a final regulation to help increase donation.

The proposal was suggested by approaches that have been successful in other areas. For example, studies in southeastern Pennsylvania have found substantial increases in donation since a 1994 donation law took effect. Based on Pennsylvania's experience, HHS estimates that the number of donors nationwide could increase by 20 percent within two years of publication of a final hospital regulation.

An estimated 10,000 to 15,000 deaths in the U.S. each year could result in organ donation. However, there are now only about 5,500 cadaveric donors per year. One 1996 study indicated that of all potential donations, 32 percent of families agreed to donation; 36 percent of families denied consent for donation; and in 27 percent of cases, either potential donors were not identified or no request was made to the family. (Another 5 percent eventually proved medically unsuitable.)

"If a significant number of potential organ donors are being missed because these deaths are not identified or the family is not asked, then we need to work with the transplant community immediately to address this problem," Secretary Shalala said.

A final element of the new initiative will be to develop research and evaluation efforts to more systematically identify barriers to donation as well as practices that work to encourage donation. HHS will sponsor a special conference next spring to help identify this information.

The number of cadaveric organ donors each year in the U.S. has increased from 4,084 in 1988 to 5,417 in 1996. But the increase has not kept pace with the need, especially as transplant technology has advanced. Despite the increase in donors, deaths among those on the organ transplant waiting list have grown from 1,507 to 4,022 during the same period.

Some 20,000 Americans (about 55 each day) received organ transplants in 1996, but more than 55,000 people are on the national organ transplant waiting list, up from 16,000 in 1988. About 10 people each day die while awaiting an organ transplant.

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