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Currently, about 62,000 patients nationwide await organ transplants, and some 12 die each day while waiting. Less than one-third - about 20,000 - receive transplants each year. While the number of cadaveric donors rose in 1998 to nearly 5,800, with about three organs recovered from each donor, it still falls far short of the substantial and growing need. Most Americans say they support donation and would carry out their loved one's wishes if they knew them, but only about half of families asked give consent. If families discuss and share their decision to donate, many more lives could be saved.

Three Elements of the National Initiative

Building Partnerships and Increasing Family Discussion

Sharing life means sharing your decision. A new groundbreaking study funded by HHS' Agency for Health Care Policy and Research (AHCPR) and the latest Gallup survey on donation both confirm that nearly all Americans would consent to donation if they knew that their loved one had requested it. However, only half or fewer would consent if they were unaware of these wishes.

The AHCPR study, conducted by researchers at Case Western Reserve University and the University of Pittsburgh, examined families who had faced real-life decisions about donation and found that only 43 percent of them had ever discussed donation with their loved ones. Less than 25 percent knew if their loved ones carried donor cards. Families who were undecided when asked to donate were only half as likely to consent as those who were initially inclined to donate. Overall, less than half (47.5 percent) of the families consented to donate, yet the overwhelming majority (95 percent) of the families indicated that knowledge of their loved one's wishes would have had substantial influence on their final decisions.

Partners respond by encouraging Americans to donate. Dozens of health care, business, minority, religious, educational and government organizations have joined this initiative to encourage all Americans to discuss and share their decision to donate with their families before the occasion to donate arises. They are reaching out to their employees, members, and the public to encourage donation, and thanks to HHS' partnership with the Coalition on Donation, they are using the same message as the national public awareness campaign developed by the Coalition and the Advertising Council, "Share your life. Share your decision."

Expanding Opportunities for Families to Donate

HHS' Health Care Financing Administration (HCFA) revised its Hospital Conditions of Participation for Organ, Tissue and Eye Donation (June 22, 1998, 63 Fed. Reg. 33856) effective August 21, 1998, to maximize opportunities to donate by requiring Medicaid- and Medicare-participating hospitals to notify OPOs of all deaths and imminent deaths so potential donors are identified and families are asked about donation. Hospitals now will refer 2.1 million hospital deaths annually to the nation's 62 OPOs or to a third party designated by the OPOs to handle the referrals. Hospitals also will work with the OPO to ensure that the family of every potential donor knows about its option to donate organs or tissues. Hospitals also will have agreements with at least one tissue bank and one eye bank to preserve and distribute tissues and eyes, as long as these agreements do not interfere with organ donation.

To ensure that individuals who approach families demonstrate discretion and sensitivity, hospitals must select an OPO representative or others who have completed a training course offered or approved by the OPO. Hospitals also must work with OPOs and the eye and tissue banks to educate hospital staff on donation issues and review death records to make sure potential donors were correctly identified.

To support these activities, HCFA and HHS' Health Resources and Services Administration (HRSA) will co-sponsor a June workshop to develop a resource guide to assist in educating and training hospital staff. In addition, they will co-host a conference in September to exchange information on successful strategies for increasing donation, including effective referral, consent, education and monitoring practices. Finally, the Joint Commission on Accreditation of Healthcare Organizations, which reviews the performance of most of the nation's hospitals, has incorporated the revised hospital conditions into its standards for accreditation.

HHS estimates that the revised hospital conditions can increase organ donation by 20 percent within the first two years. In addition to preliminary data indicating a 5.6 percent increase in organ donors in 1998, data collected from tissue banks by the Musculoskeletal Transplant Foundation suggests that tissue donation overall has increased about 52 percent since the new provisions took effect.

Finally, HCFA will continue to hold OPOs responsible for meeting performance standards. On a regular basis, OPOs are evaluated against their peers on five specific performance standards. HCFA will work with the Association of Organ Procurement Organizations (AOPO) toward stronger performance by OPOs.

In 1995, organ donation results for the nation's then 66 OPOs ranged from a high of 34.3 organs donated per million population to a low of 2.4 donors per million. (In 1996, two OPOs were terminated from Medicare and Medicaid participation because they did not meet current performance standards. In early 1997, two OPOs consolidated into one.)

Learning More About What Works to Improve Donation and Transplantation

HHS serves as a catalyst for the field by emphasizing and encouraging carefully designed and rigorous evaluation components and research projects to ascertain effective interventions for increasing donation. In fiscal year 1999, HRSA is providing up to $5 million for projects through a peer-reviewed, competitively awarded extramural support program. The goals of this program are to implement, evaluate, and disseminate model interventions with the greatest potential for yielding a verifiable, demonstrable impact on donation and which are replicable, transferable and feasible in practice. The program will fund pilot and replication studies.

Other HHS agencies, especially the National Institutes of Health and AHCPR, are supporting research to improve donation and transplantation. At NIH, this research includes basic, pre-clinical, and clinical research on immune system functioning, graft acceptance and rejection, avoiding the need for re-transplantation, organ matching in diverse populations, methods to improve organ and tissue retrieval and preservation, and improving the quality of life for transplant patients. In addition, NIH's National Institute of Allergy and Infectious Diseases is supporting the development and evaluation of a statewide donor registry and education program by the Louisiana Organ Procurement Agency. The AHCPR study of donor and non-donor families is described above.

National Initiative Partners

Public Awareness Partners: HHS has teamed up with the Coalition on Donation, whose members include national and local organizations, to deliver a consistent, unified message on the importance of family discussion. With the Advertising Council, the Coalition on Donation has implemented a multi-year, national public awareness campaign.

Health Care Organizations: Health care organizations are uniquely positioned to educate their members, who in turn educate their patients, about the need for organ donation. The American Medical Association, the American Academy of Family Physicians, the American Nurses Association, the American Association of Health Plans, and the National Medical Association provide their members with organ donation educational materials. Other health organization partners include the American Association of Neurological Surgeons and the Congress of Neurological Surgeons.

Law Associations: Attorneys, especially those involved in estate planning, are in strategic positions to encourage and help Americans make end-of-life decisions, including donation decisions. The American Bar Association, through its Real Property, Probate and Trust Section, in partnership with HHS, will encourage attorneys to educate clients on organ donation.

Educational Organizations: Educators are key to teaching the nation's children and young adults about the need for donors. HRSA is partnering with the American College Health Association, the University of Rhode Island and TransWeb University (www.transweb.org/journey) to reach young people with the donation message.

Faith Organizations: Many Americans turn to religious leaders for guidance about organ and tissue donation and other end-of-life decisions. A number of faith and interfaith organizations are educating their members about the gift of life and helping HHS to promote the annual observance of National Donor Sabbath, a Friday-to-Sunday period two weekends before Thanksgiving. These organizations include: the Congress of National Black Churches, the General Conference of the Seventh-day Adventist Church, the Interfaith Conference of Metropolitan Washington, the National Interfaith Coalition on Aging, the National Spiritual Assembly of the Baha'is, the Presbyterian Church USA, the Rabbinical Assembly, the Rabbinical Council of America, the Shepherd's Centers of America, and the Union of American Hebrew Congregations.

Donor and Recipient Groups: The National Kidney Foundation's National Donor Family Council and HHS have teamed up to implement a new Web site at www.kidney.org/recips/donor to provide information and bereavement support for donor families. In addition, HRSA, the National Donor Family Council, and other national donor, recipient, and transplant organizations have joined together to host the sixth annual National Donor Recognition Ceremony on April 18, 1999 in Washington, D.C.

Business Organizations: The U.S. Chamber of Commerce and the Washington Business Group on Health, representing many large and small businesses, are helping members conduct employee education campaigns. The Home Depot also has made donation information materials available to its nationwide network of stores.

Media: Another HHS partner, the James Redford Institute for Transplant Awareness, is reaching out to national media organizations and schools, to promote public awareness. HHS worked with producers of the CBS special "Nicholas' Gift" to develop and air a 10-second post-program public service announcement featuring the Vice President and Mrs. Gore encouraging donation.

Minority Organizations: The National Minority Organ/Tissue Transplant Education Program (MOTTEP), with the support of NIH's Office of Research on Minority Health and the National Institute of Diabetes and Digestive and Kidney Diseases, is the first national program to empower minority communities to promote minority donation and transplantation as well as good health habits. In turn, this effort should improve the chances for a well-matched organ amongst minorities waiting for transplants. Now in 15 sites across the country, MOTTEP's target populations include African Americans, Hispanic/Latinos, Native Americans, Asians, Pacific Islanders and Alaskan Natives. HHS is a national sponsor of National Minority Donor Awareness Day 1999 (August 1) hosted by MOTTEP, American's Blood Centers Foundation and The Marrow Foundation in 22 cities nationwide.

State Organizations: HHS works with the National Governors' Association, the National Conference of State Legislatures, the Council of State Governments and the Association of State and Territorial Health Officials to encourage state efforts to increase donation. With the encouragement of the Department of Transportation's National Highway Traffic Safety Administration, the National Association of State Emergency Medical Directors passed a resolution for automated statewide donor registries linked to state motor vehicle departments.

Federal Partners: The federal government is educating its own about donation, hoping to serve as a model for other employers. For example, with assistance from the Office of Personnel Management, HHS has provided donation materials to federal agencies for employees, including donation messages on pay stubs and full-page donation ads in the federal health plan catalog for the past two years. The Department of Defense, which routinely asks patients in its health care system to consider donation, is making donation information materials available in its treatment facilities.

For more information on the National Organ and Tissue Donation Initiative, visit the U.S. Department of Health and Human Services' Web site at www.organdonor.gov, or contact: Health Resources and Services Administration, Division of Transplantation, 5600 Fishers Lane, Room 4-81, Rockville, MD 20857, 301-443-7577 (telephone), 301-594-6095 (fax)

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Note: HHS fact sheets releases are available on the World Wide Web at: www.hhs.gov.