Proposition 64 was struck down by voters 79 to 21 percent, and soon thereafter, the American Medical Association publicly declared that doctors could not ethnically refuse treatment to AIDS patients.27 AIDS prejudice was further diminished when the media reported the story of Ryan White, a 13-year-old hemophiliac diagnosed with AIDS, who had been barred from school. At that time, the public still associated the disease with adult gay men. White’s story put the danger of AIDS stigma into sharp relief. Few people could support a school board that branded a child a health hazard to his fellow students and teachers. Fewer still could fathom a community sending death threats to a boy and his family.
White’s story brought home to the general public, as well as legislators, politicians, and policy makers, that AIDS really could happen to anyone. His bravery and precocious sense of social justice helped advance political and public support for culturally sensitive approaches to HIV care, culminating in the groundbreaking legislation and HRSA program named in his honor and made into law in August 1990, less than five months after his death.
Despite these successes, medical providers continue to deal with the misinformation and misconceptions around AIDS that emerged during the first decade of the epidemic. Many of these fears, particularly among those in heavily impacted communities, have created significant barriers to HIV testing, treatment, and care.28 Though communities of color were disproportionately impacted by HIV from the start of the epidemic, many did not realize they were at risk, fueling infection in these communities.29 In 1985 for example, African-Americans and Latinos accounted for 25 and 14 percent of cumulative AIDS cases in the U.S. respectively.30 And by 1996, the proportion of AIDS cases among African-Americans surpassed those among Whites for the first time.31 Bradley-Springer says that the spike in HIV/AIDS cases in communities of color reflected “huge gaps in the medical system that had been previously pushed to the side. The advent of AIDS among African-Americans and other minorities was directly related to them having never received the services they needed for the other diseases impacting their communities.”32
Complicating matters further was the historic mistrust among ethnic and racial minorities of Western medical providers. This wariness is not groundless; but based on historic mistreatment and negligence documented in the Tuskegee Syphilis Experiments on African-American men and forced sterilizations performed by the Indian Health Service on Native American women.33,34 Bradley-Springer points out that this mistrust is part of the cultural constellation for many ethnic and racial minority patients living with HIV. “It’s part of what you’re raised with: going in for services and being ignored. You learn that Western providers disrespect you; that the way your culture deals with illness is based on magic, not science. They are there to say, ‘Here take these pills. I’m the person who knows best.’
“Overcoming that history starts by working with patients on the individual level,” Bradley-Springer explains. “You have to be direct and say ‘You’re here to see me. Why don’t you tell me what’s going on with you? What do you think has caused the things you have?’”
In addition, Bradley-Springer points out that recognizing that one does not have the skills or information necessary to understand a patient’s cultural needs—and being honest about it—is a form of cultural competency itself. “Be quick to apologize if you make a mistake with a patient, and be upfront when you have medical news to share. Just say ‘I don’t know how this diagnosis or drug is going to make your life different.’” These open dialogues, she says, “speak to the essence of culturally competent health assessments—questions informed by the socioeconomic and political climates in which the provider is working.”