Lives Worth Saving

Solid organ transplantations (kidney, liver, heart, pancreas, heart-lung, intestine) are life saving surgical procedures with high rates of success for persons with certain diseases leading to end stage organ failure. Due to a severe shortage of donated organs, however, many individuals succumb to their disease before a suitable organ for transplantation becomes available. According to survey results, many people with disabilities think they do not have equal access to life-saving organ transplants. Although there are no hard facts documenting limitations to access, it is clear that scores of people with mental retardation have been told that they are not suitable candidates for transplantation due to their intellectual disabilities. Some families may not have been informed about the option of live donation of specific organs. National disabilities organizations have become concerned and are uncertain what to tell their members about the current state of transplant options for individuals with mental retardation or other disability.

LIVES WORTH SAVING provides a "Lives Worth Saving Hotline" that serves as a resource center for general information on transplantation and donation. The LIVES WORTH SAVING HOTLINE is for any individual who has a disability and may need a life saving organ transplant. We provide authoritative information on the transplantation and organ donation processes and advise people with disabilities on how to maximize their transplant potential. We will conduct research studies to determine how much access people with disabilities have to transplant centers, and we will document outcomes and rates of success after transplantation. We will apply behavioral technology to develop supports for individuals with mental retardation both pre- and post-transplantation. We are cooperating with the National Work Group on Disability and Transplantation. This group has drawn attention to the need for research on equal and appropriate access and to related issues.

The LIVES WORTH SAVING HOTLINE number is 1-800-637-2316; TTY: 1-800-552-6891. LIVES WORTH SAVING is a national program of Nisonger Center, a support unit of the Ohio State University Medical Center. The Nisonger Center is a member of the national UCEDD network and is core funded by the Administration on Developmental Disabilities, the Bureau of Maternal and Child Health, the National Institutes of Health, and the Ohio State University.

The LIVES WORTH SAVING brochure can be downloaded in Word format.

For more information, contact Linda Jones, R.N. at (614) 292-5482;
TTY: 1-800-552-6891 or 614-688-8040.

Recent Publication:

Abstract: We reviewed the literature on accessibility and outcomes of organ transplantation in individuals with mental retardation (MR) and on the prevalence of organ donation in this population. Six centers have published outcome data on renal transplantation in 34 individuals with MR. The one- and three-year patient survival rates were 100% and 90%, respectively. The studies reported good compliance with post-transplant medications due to consistent support from family members or caregivers. The outcome studies for liver and heart transplantation among these individuals are limited.

The literature on organ donation in individuals with MR is mostly concerned with legal issues. The courts generally permit organ donations when such is in the best interests of the donor.
Full article (PDF)