Doctors and medical staff perform a heart transplant at the Cleveland Clinic in Cleveland (AP Photo/Jamie-Andrea Yanak)

An ambitious campaign to increase black enrollment on organ donation began in 1982, when blacks represented about 12 percent of the U.S. population, but only 3 percent of organ donors. A team at Howard University headed by Dr. Clive Callender embarked on the journey to increase donor participation.

The number of organ donors has increased over time, but is still low relative to the demand for transplants, especially for kidneys. About 35 percent of patients on the renal transplant list are African Americans, but they account for only 21.9 percent of those receiving kidneys. For African Americans who eventually receive transplants, the wait is much longer than it is for their white counterparts — a median of 39.7 months for a kidney transplant, compared with a wait of 20.1 months for Caucasians.

The reason for the scarcity of organ donations from African Americans is multi-faceted, but one of the most important causes is a lack of trust in the medical system among many blacks.

Although the Tuskegee Experiment ended almost 30 years ago, people still recall how the life saving and curative basic treatment of Penicillin was withheld from African American men suffering with Syphilis. Many African Americans still have the same suspicions about possible experimentation today.

Religious beliefs are also often cited as a contributor to the reluctance to donate among African Americans. Some people are under the notion that they should be buried with all their organs. One study of 60 subjects with 41 controls showed that if there were educational intervention partnered with religious organizations, attitudes towards transplants would change in favor of donation.

Some African Americans share the sentiment that even if they donated organs, they would be less likely to benefit because of poorer survival rates after receiving the organs. Poorer outcomes have been demonstrated in clinical trials, with one-year survival rates for a kidney transplants at 94.1 percent for Caucasians, and only 88.9 percent for African Americans.

African Americans are also more likely to develop end-stage renal disease after kidney donation. The reasons for this are still being studied, but less intensive follow up in local health care facilities, compared with larger medical centers, could be a factor. Also, African Americans tend to have other co-existing diseases such as diabetes, obesity and dietary issues.

A study in Ohio of 1,283 subjects testing racial disparities in organ donation indicated that fewer African American people signed donor cards – 39 percent of blacks, compared to 66 percent of whites. Other findings from the study revealed greater mistrust in the equity of the donation system, with African Americans fearing that they would be less likely to be revived if doctors realized they were signed up to be donors.

Education about being a kidney donor improves the likelihood of patients receiving – and families and friends donating kidneys. After patients were shown a 10-minute videotape of kidney recipients and donors, along with a discussion by a health educator, there was a higher percentage of dialysis patients who considered receiving organs – and people were more apt to engage their communities in playing a more active role as donors.

Awareness of organ donation has gradually increased in the African American community. But more time has to be spent by the medical community at large, as well as advocacy organizations, working on the trust factor and researching ways of ensuring better survival after organ transplantation.