Minority Organ Donation: The Power of an Educated Community

In the late 1970s a grassroots movement emerged that aimed to increase organ donation rates among minorities in the United States. As part of this movement, 40 individuals were brought together and identified five obstacles for minority organ donation: (1) lack of transplantation awareness, (2) religious beliefs and misperceptions, (3) distrust of the medical community, (4) fear of premature declaration of death after signing a donor card, and (5) fear of racism. As a result of this session, a strategy to address identified obstacles emerged, consisting of face-to-face dialogue delivered by ethnically similar community messengers who were health care providers, transplant recipients, persons awaiting transplants, donors, and donor family members. Started by Dr. Clive Callender, The National Minority Organ Tissue Transplant Education Program (MOTTEP) aimed to increase organ and tissue donations within multiple ethnic minority groups using the strategy outlined above. Designed in such a way that methodology could be easily replicated and adapted by cities interested in promoting donation and transplantation within minority populations, MOTTEP outreach training involved understanding the donation and transplantation process, building local advisory boards, volunteer recruitment and retention, media relations, partnership building, special event planning/hosting, time management, and funds development. With a focus on both health promotion and disease prevention, MOTTEP programming and activities targeted youth and adults, with a goal of increasing the number of minority Americans who assumed active roles in organ and tissue donation, including holding family discussions to address both topics. Over time, a number of strategies were used to achieve this goal, including an established network of speakers available to religious and community-based organizations to promote organ and tissue health, print media and radio outreach, an open-access library of audiotapes, videotapes, and print materials, supporting national and local forums targeting community leaders who could share information on organ and tissue health with minority communities, and collaboration with community-based organizations to implement health promotion and public awareness campaigns. To ensure that target communities saw MOTTEP as an organization that cared about the community first and not just organ and tissue donation, the “Love Yourself, Take Care of Yourself” campaign was launched in 2001. By focusing primarily on promoting healthy lifestyles, MOTTEP found that community members were more receptive to donation messages. Tactics used ranged from radiothons to e-mail blasts encouraging individuals to sign donor cards and have a family discussion about organ donation. The organization’s website also served as an educational platform for information on disease prevention and organ and tissue donation, reaching 5,000 people each month. Pre and post intervention survey questionnaires have been used to evaluate MOTTEP programs like the “Love Yourself, Take Care of Yourself” campaign. Pre and post data collected from 6,789 participants aged 12-18 revealed significant, positive changes in beliefs about organ/tissue donation, understanding of end stage renal failure, and future plans for organ/tissue donation. 

 

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