Finding Three: Fears About Transmission

Finding Three: Fear About HIV Transmission Persists

Experts say the stigma around HIV/AIDS stems primarily from two sources, the first being fear of transmission. We found that while most people do understand how HIV is most likely to transmitted, they clearly overstate some risks and question whether enough is known about the virus. Not being certain about the possibility of indirect transmission, many adopt a "better safe than sorry" attitude. These uncertainties may also explain the anxiety many say they would feel around individuals with HIV.

Many of our experts maintained that the public is still not clear on how exactly HIV is and is not transmitted, saying that this misinformation leads to widespread HIV stigma. A civil rights attorney thought that "the biggest challenge in the U.S. is that there’s still a lot of stigma and discrimination against people with HIV, and that challenge relates to an incredible amount of ignorance on the part of the general public about HIV and how it is and is not transmitted." They also point out that there is a great deal of fear of transmission. A medical historian put it this way: "I think an awful lot of people out there have at some point read or been exposed to the fact that you can’t get HIV by someone coughing on you, or sharing a toilet seat, or even by kissing. Whether or not people actually believe it is different."

Some experts pointed to existing policies that draw on outdated notions about HIV transmission and lead to further discrimination. Experts gave examples of how agencies discriminate based on outdated laws and guidelines. The director of an HIV law and policy organization told us, "[A]gencies exclude people with HIV from serving in the military, have special rules for flying an airplane…and just about every state in the country has some specific law or interpretation of the law that excludes people with HIV from doing everything from being hairdressers or massage therapists to being nurses and physicians."

A civil rights attorney offers another example: "The FDA won’t let any man who’s had sex with another man anytime since 1977 donate blood. That’s sending out a false message about how dangerous men who have sex with men are and how likely it is they will have HIV."

Overall, the public generally has an understanding of the relative risks of HIV. When asked how HIV was transmitted, people identified the most direct routes of transmission — unprotected sex, needle sharing and blood transfusions — and did not volunteer any other possibilities. Yet when presented with possible scenarios—such as getting HIV through casual contact, mouth sores, or open cuts on the skin — almost everyone said it was less of a risk, but many clearly overstated the actual danger for these activities. In a recent survey, 1 in 5 Americans were found to believe that a person can become infected with HIV just from sharing a drinking glass.¹ Some participants in Los Angeles even thought that HIV could be transmitted through sweat.

In every group, participants demonstrated anxiety about the possibility of transmission through contact with HIV-positive individuals in certain occupations, such as medicine, dentistry, sports, food service, child care or teaching. In medicine, dentistry and sports, the fear was that there would be high potential for both the HIV-positive person and the person interacting with him or her to get cuts and exchange blood. And while some were more skeptical that HIV could be transmitted this way, they often refused to rule it out.

In addition, some admitted to their own fear of being around people they knew who were HIV-positive. In New York, a woman thought that athletes should have to disclose their status to their coach, although not the whole school. They recognized that their attitudes were perhaps “selfish” and might be unfair, but they were uncomfortable with not knowing the HIV status of their doctors and dentists.

For some, it was more about not taking any risks when it comes to the safety of their children. One man in Los Angeles explained: “[Y]our child is your number one priority. That should come first…. If you know a person has AIDS, or you find out a person has AIDS…you might feel sorry for them, et cetera, but you wouldn’t want them around your child.” Another man in Westchester feared for the well-being of his family when discussing why he felt his employees should disclose their HIV status: “[I]f I’m working with you, and you have AIDS, and I have a family of four kids, you’re going to get me with AIDS, and I’m going to be gone in two years, but you should be able to at least let the employer know, and I know that you have AIDS, and I’ll be careful around you, or you’ll be careful around me, so he’s giving me the respect that I don’t have it.”

Another possible source of participants’ fears and misconceptions about HIV transmission may stem from their reliance on messages they had heard years before, which made it difficult for them to separate rumors from fact. One man from Westchester was confused about the transmission risks for kissing, saying, “A lot of these questions…I don’t know, I’m only going back to like the late 1980s, mid- to late 1980s, and I remember at that time they had said that they weren’t sure, so I really don’t know. I would say…it’s probably a possibility [to get HIV from kissing].”

A woman in Des Moines said, “I know like when AIDS first hit in the ’80s, people started hearing about it, and there was all these rumors how you can get it and how you can’t. I don’t think anyone ever heard the answers. It kind of went away, and people started saying, ‘No, you can’t get it that way,’ and then like I said, no one really knows.” A man in Birmingham pointed out that there may be a generation gap, saying, “People that are mostly my age, some of our ages, that everybody was so scared when it first came out. They even thought like mosquitoes might be able to carry the germ. It just put so much fear in everybody’s mind that it’s hard to get that out.”

A man in Los Angeles remained skeptical that everything is known about HIV transmission, saying, “[F]irst it was just everybody thought you couldn’t touch anybody that had it. Then they come to find out, well, no, you have to have blood. Then it come to be intercourse, then they thought it was gays. Then they thought it was this and that. There’s a whole lot of rumors, and scientists are still studying and finding out every day.”

Nevertheless, participants did seem to recognize the unique stigma that stems from fear about HIV’s communicability. Some participants directly addressed how ignorance can lead to HIV discrimination; as one man in Des Moines put it, “I’d probably really find out all the facts I could about becoming HIV-positive so I wouldn’t be crucifying somebody from lack of knowledge or from stupidity. That’s outrageous to condemn somebody without even knowing the facts. A lot of humans do that. That’s a human frailty.”

A man in Westchester talked about how the perception of transmission leads to fear, saying, “The perception of being able to transmit, even across the table, is like, ‘I don’t want to be here,’ like, ‘I don’t want to take that chance.’ That, I think, is the difference, and that goes back to educating people on really how the disease is transmitted, because I think that you could eliminate a — not all the fear, but a heck of a lot of the fear.”

[1] “2009 Survey of Americans on HIV/AIDS,” Kaiser Family Foundation, April 2009.

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