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HIV Won’t Kill You, But the Stigma Might

NPR recently interviewed two men living with HIV about the stigma surrounding the virus. Mark King — who was diagnosed HIV+ in 1985, when it was still a death sentence — says he believes that as medications have improved, and as the lives of those of us with HIV have improved, social stigma surrounding the virus has risen.

“In the early years, we were doing everything we could just to help the dying, and there was no time to point fingers or blame or judge people,” says King. “Now, if you were to test positive today, how did that happen? What a disappointment you are. Why weren’t you listening to all these prevention messages that we’ve been giving you all these years? You must be a terrible person.”


HIV-related stigmas hinder efforts to prevent the virus from spreading

HIV is not the disease it was in 1985, or even in 1995 for that matter. Today, people who are HIV-positive and take their medication properly have the same life expectancy as those who are negative. Yet according to the World Health Organization (WHO), in 2013, there were approximately 35 million people around the globe who were living with HIV or AIDS.

Despite significant strides made in the last several years, the epidemic is by no means over, and the HIV/AIDS-related stigma is a major hindrance in changing those statistics.

Studies found that among people living with HIV/AIDS in South Africa, those who experienced stigma or discrimination were less likely to disclose their HIV status to their sexual partner, and non-disclosure was associated with transmission risk behavior. A similar study in France sampled more than 2,000 sexually active people living with HIV/AIDS and found that discrimination was associated with increased unsafe sex.


We know stigma exists, but there is little research into how to end it

A 2010 study published by the U.S. National Library of Medicine found that there have been surprisingly few studies focused on developing valid and reliable measures of HIV-related stigma or on assessing ways to reduce those stigmas.

Furthermore, the researchers found that HIV-related stigmas are often not explicitly defined in those materials. The programs that do exist are modeled after those designed to deal with other forms of stigma, rather than for the specific and complex stigma associated with HIV/AIDS.

If we’re still too afraid actually say about what it is we are dealing with — to define the stigma — how can we possibly create effective ways to treat it?


How we can end the stigma on the personal level

The stigmas associated with HIV and AIDS are so deeply embedded in our language that we don’t even realize we are perpetuating them.

While individuals don’t construct stereotypes on their own, they do have the power to change them. Be empowered: be mindful of your language when talking about HIV and AIDS, educate yourself on the virus and how it spreads, and speak openly about getting tested and disclosing your own status.

A community’s attitudes are shaped by the people who comprise it.