Increasing organ donation in the African-American community: altruism in the face of an untrustworthy system.

The shortage of transplantable organs hits the African-American community disproportionately hard. African-American persons are more likely to have end-stage renal disease and require kidney transplantation than Americans of other ethnic backgrounds. They are also less likely to receive donor kidneys. Although 35.6% of the 39 924 persons on the kidney transplant list are African-American, African-American persons account for only 21.9% of those who receive kidneys (1). Consequently, African-American persons wait a median of 39.7 months for kidney transplantation compared with 20.1 months for white Americans (2). This longer waiting time translates into higher morbidity and mortality for African-American persons with end-stage renal disease. For reasons that are not well understood, this inequity in waiting time does not exist for liver or heart transplantations. Perhaps it could be partially explained by biological differences in organ matchingorgans other than the liver do not require HLA matching. Furthermore, African-American persons are not overrepresented on the waiting lists for other organs relative to their numbers in the general population (3). The greatest barrier to improving this situation is a shortage of organs. Small studies have reported that African-American persons decline to donate organs two to three times as often as white Americans (4). Our own study of consent to in-hospital requests for organ donation found that 47.9% of white families consented to organ donation compared with 33.3% of African-American families (Siminoff LA. African American perspectives on organ donation [Presented paper]. Fourth International Society for Organ Donation Congress. 11 July 1997; Washington, DC). Although kidneys from African-American persons are more likely to be suitable donor matches for other African-American persons, most African-American persons who have kidney transplantation receive cadaver kidneys from nonblack donors. Unfortunately, consent rates for cadaveric organ donation among all Americans are low. Fewer than 50% of families of brain-dead patients who would be eligible to donate organs consent to requests for donation (5). African-American persons are also less likely to become living related donors (6). An increase in the number of African-American persons who become living related donors and an increase in rates of cadaveric donation by African-American persons would ameliorate the disparity between supply and demand. Attitudinal surveys show that African-American persons are less willing than Americans of European descent to donate their own or a family member's organs (7). One large Gallup survey found that 72% of white persons were very or somewhat likely to want to donate their own organs, whereas only 52% of African-American persons felt this way. Another, more recent survey found that only one third of African-American and Hispanic persons plan to be organ donors compared with more than half of white persons (7, 8). The key question is: Why do African-American persons donate less frequently? Are African-American persons less supportive of organ donation specifically, or do the lower rates of donation reflect less overall interest in charitable activities? The latter option seems unlikely because in other aspects of life, African-American persons of all socioeconomic levels are more likely than persons of other ethnic groups to volunteer or give to charities. In 1987 and 1991, for example, African-American persons gave a higher percentage of their incomes to charities than white persons (9, 10). This fact suggests that lower rates of organ donation among African-American persons are related to factors other than a lack of altruism. It has been suggested that African-American persons are unaware of the urgent need for organs. Various public opinion polls have found that knowledge about transplantation, knowledge about the specific need for transplantable organs for African-Americans patients, and understanding of the usefulness of donated organs have been slower to diffuse into the African-American community. However, although awareness of transplantation in this community was low in the 1980s, it is now close to that of the white community (around the 90th percentile) (11, 12; Siminoff LA. African American perspectives on organ donation [Presented paper]. Fourth International Society for Organ Donation Congress. 11 July 1997; Washington, DC). Another hypothesis is that African-American persons have actively negative opinions about organ donation. Although most major religions support organ transplantation, African-American persons are more likely than white persons to believe that it is against their religion (14% compared with 3%). African-American persons are also more likely to believe in the importance of being buried intact (7). Other negative opinions about donation may reflect African-American persons' general distrust of the medical system. African-American persons are more likely to believe that health care professionals will not do as much to save their lives if they are designated as organ donors. Our own poll of 318 randomly selected white respondents and 126 randomly selected African-American respondents found that 21.2% of white persons agreed that physicians were less likely to save their lives if they were known to be organ donors; 37.9% of African-American persons agreed. Furthermore, 40.0% of African-American persons, compared with 30.7% of white persons, characterized the system of organ distribution as unfair (Siminoff LA. African American perspectives on organ donation [Presented paper]. Fourth International Society for Organ Donation Congress. 11 July 1997; Washington, DC). Other polls have reported similar negative opinions about organ donation and allocation (7). Despite this rather discouraging overall picture, attitudes toward and knowledge about organ donation have improved in the African-American community over the years, leading to an increased willingness of African-American persons to become organ donors. Callender (13) reported an increase in persons signing donor cards, from 25 per month to 600 per month, between 1982 and 1986. Gallup surveys report that in 1990, 24% of African-American respondents stated that they had signed donor cards compared with only 7% in 1985. Finally, the Scientific Registry of Transplant Recipients and Organ Procurement reports an increase of 29% in rates of African-American organ donation between 1988 and 1994 (14). Many of these positive developments can be attributed to efforts by members of the transplantation community to raise awareness and promote positive attitudes about donation among minorities. Callender, a noted transplant surgeon at Howard University, has worked for more than 20 years to develop community and public education programs about organ transplantation for African-American persons (13, 14). From 1982 to 1986, the D.C. Organ Donor Project, funded by the National Kidney Foundation of the District of Columbia, promoted a grassroots approach to organ donation that involved speakers, multimedia presentations, and endorsements of organ donation by African-American sports and political figures (13). In subsequent years, increasingly sophisticated approaches have been used to disseminate knowledge, culminating in the development of the Minority Organ/Tissue Transplant Education Program (MOTTEP) in 1993. In 1995, MOTTEP was established in 11 cities with the highest national minority populations. This program combines community involvement; face-to-face presentations by minority donor families, transplant recipients, and candidates for transplantation; collaboration with community, social, and religious groups; media promotion; and information dissemination to raise awareness and acceptance of organ donation among minorities (14). Unfortunately, despite these signs of progress, the consent rates among African-American persons remain low. We believe that attempts to increase improvement should focus on three areas. First, in addition to promoting the need for donation, public service announcement campaigns should urge African-American persons to talk to their families about donation. In our recent survey, we found that white persons were significantly more likely than African-American persons to be unequivocally willing to donate their own organs (69.7% compared with 56.3%) and a relative's organs (43.5% compared with 33.9%). To a surprising degree, this difference reflected concerns of African-American persons about knowing a relative's wishes before agreeing to donation. Fully 36.3% of African-American persons would agree to donate a relative's organs if they knew the relative's wishes beforehand. In fact, if we combine those persons who would be willing to donate unequivocally with those who would do so if that were their family member's wish, we find that the differences between white and African-American respondents nearly disappear; 73.7% of white respondents and 70.2% of African-American respondents would donate. Finally, this study found that African-American persons were less likely than white persons to have discussed their wishes about donation with their families (42.4% compared with 58.2%). This may partly explain lower rates of consent to donation by African-American families (Siminoff LA. African American perspectives on organ donation [Presented paper]. Fourth International Society for Organ Donation Congress. 11 July 1997; Washington, DC). The current campaign to encourage persons to talk with their families about organ donation will probably be especially effective. Second, health care providers need to examine the degree to which their own behavior results in lower rates of donation by African-American persons. Several studies have shown that many health care professionals are less likely to approach African-American persons than persons of other ethnic backgrounds about organ donation (4). Th