Stigma Still Attached to HIV

Ignorance appears to be one reason for stigmatizing people with AIDS.

One in five Americans has an unfavorable attitude toward people living with HIV infection, according to a large-scale survey published in the Dec. 1 issue of the CDC's Morbidity and Mortality Weekly Report.

"It is important to understand that stigma surrounding HIV infection still exists -- it has not gone away, and it is something we need to continue to address," says CDC deputy AIDS chief Ronald O. Valdiserri, MD, MPH.. "We may be three decades into the epidemic, but we are still at a level of stigma that is unacceptably high."

The survey enlisted almost 7,500 adults from all parts of the country. In return for agreeing to participate in weekly surveys, they received Internet access via television. Of the more than 5,600 people who responded to the HIV stigma question, nearly 20% agreed with the statement, "People who get AIDS through sex or drug use have gotten what they deserve."

"That is a fifth of the population -- if 20% of people still think that, our battle against irrational hatred is not yet won," says Mindy Fullilove, MD. A professor of clinical psychiatry and public health at Columbia University, Fullilove has long worked on the problem of HIV transmission in high-risk communities.

This stigmatizing attitude was most frequently expressed by men, whites, people age 55 and older, people with no more than a high school education, people with an income of less than $30,000, and those in poor health. Blacks were far less likely to hold this attitude than other racial groups.

Ignorance appears to be one reason for stigmatizing people with AIDS. People who did not know that HIV cannot be transmitted by a sneeze or cough were twice as likely to stigmatize AIDS patients as those who did know. An appallingly high proportion of those surveyed -- more than 41% -- think a person could catch AIDS from a sneeze. This is only a little better than in China, where 49% of people believe this fallacy, according to a Peoples University of China survey reported by Reuters.

University of California at Davis psychology professor Gregory Herek, PhD, has conducted nationwide surveys of AIDS attitudes and knowledge for more than 10 years. "Notions that HIV can be spread by casual contact are closely linked to stigma," according to Herek. "To the extent people can be put into categories, people whose misinformation is based on distrust of what the government says tend not to be angry or disgusted with AIDS patients, but just worried that they themselves might get infected. For another group there is a condemnation of gay men and intravenous drug users that leads to punitive attitudes -- those are the ones who say it is their own fault. It's not a clear and simple thing."

"It is a human response to react negatively to what we can't understand and can't relate to," Valdiserri says. "We need to deal with that -- not only because it is the right thing to do, but because this has a significant impact on public health. If people are afraid to even admit they are at risk, then how can prevention work? Society has a real stake in addressing these issues."

The CDC already is planning to act. "We are conducting research to understand these attitudes, and we continue to work with faith communities -- which we feel are very important as stigma often has a moral or judgmental aspect," Valdiserri says. "The CDC also is working with White House Office of AIDS Policy to begin an advertising campaign to reduce stigma. It is scheduled to begin next spring. Also beginning next spring we will start up a training program of local HIV service providers. We have to teach the kinds of practical steps health providers can take to reduce stigma around HIV and AIDS."

CDC figures show that a third of the 4-5 million Americans with HIV infection do not know that they carry the AIDS virus. All of the experts contacted for this article stressed that AIDS stigma makes it hard for people to admit they are at risk of infection -- and keeps them from seeking the HIV testing, counseling, and treatment that can save their lives and keep them from spreading the disease.

"As long as we have a politics that says we respond to an epidemic only when we like the people who are sick, we have a grave threat to public health," Fullilove says. "It is disastrous health politics. Because the AIDS epidemic has been perceived as an epidemic of undesirables, it has been hard to get the kind of funding for education and treatment from the beginning. This has made it hard to teach people how to manage their lives in a new era of sexual behavior."

Read: AIDS phobia: Do you know someone who has it?

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