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Overcoming Stigma and Shame: A Way Forward

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On February 7, we observed National Black HIV/AIDS Awareness Day. The theme, "I Am My Brother's and Sister's Keeper - Fight HIV/AIDS!" calls on us to preserve and strengthen the health and well-being of our people by caring for and about one another and working together to reduce the disproportionately high rate of HIV/AIDS in the black community.

To that end, this year the National Black Leadership Commission on AIDS, Inc. (NBLCA) is planning to launch a nationwide anti-stigma public education initiative, "Shame-Free Stops HIV: A Campaign to End Stigma," to help ensure that all individuals in our communities are embraced and supported and receive the testing and treatment they need without judgment and without fear.

In a recent POZ magazine survey, 26 percent of respondents said that fear of HIV-related stigma and discrimination prevented them from seeking treatment. A central goal of NBLCA's campaign will be to educate people about the connection between stigma and the high rate of HIV--how shame and fear of being ostracized inhibit open dialogue about risk factors, fuel ignorance about how HIV is transmitted, discourage people from getting tested and seeking treatment, and prevent people from disclosing their HIV status to their intimate partners.

All these factors contribute to the spread of the virus. The U.S. Centers for Disease Control and Prevention (CDC) reports that approximately 250,000 people in the U.S. are infected with HIV and don't know it. These people may be unknowingly responsible for as many as 75 percent of new infections.

Medical advances now make it possible to effectively treat HIV if it is detected early, but as long as attitudes and behaviors that reinforce stigma and shame persist, HIV will continue to ravage the black community. We have long been discriminated against on the basis of skin color--we must not allow ignorance, misinformation, and a lack of understanding and compassion for others to breed yet another form of discrimination.

What steps can we take to overcome the shame and stigma surrounding HIV/AIDS?

Educate our communities. Misconceptions and misinformation about HIV reinforce stigma. Education about modes of HIV transmission, risk factors, and the serious consequences of HIV is essential.

Lead by example. The faith-based community must embrace all brothers and sisters; our faith leaders can be role models and create an environment of openness, trust, and honesty to help individuals and communities overcome stigma, shame, and fear. People need to feel they are not being judged or condemned, whether getting tested for HIV, seeking treatment as HIV-positive individuals, or for any other reason.

Promote values that encourage personal responsibility. We know that there are people in our community, as in others, who engage in risky behaviors: anonymous sex, partner sharing, failing to use condoms for protection against transmission of HIV and other sexually transmitted infections (STIs), failing to insist that intimate partners reveal their HIV status or be tested, and sharing needles during drug use. Black gay and bisexual men, as well as other men who have sex with men, need to be aware of the specific risks they face. Heterosexual black men need to be open to hearing and talking about the risk of HIV to prevent spreading the infection to black women. Young people in our communities must receive age-appropriate education about HIV and other STIs.

Too many people don't understand the dangers and think they need not worry any longer since there are now effective treatments for HIV. But the HIV epidemic is far from over, and it is diminishing the vitality of the black community. There is no shame in HIV--but it's a shame for us to let ourselves remain vulnerable and jeopardize our individual and collective health. I want us to love and value ourselves enough to protect ourselves.

Get educated, get tested, and ask intimate partners to get tested. You're worth it. I'm worth it. We are all worth it.

NBLCA is seeking community members to profile and collaborate with. If you or someone you know has a story about stepping up to combat stigma or act against shame, we want to hear from you. Please contact us at info@nblca.org.