People living with and working in HIV are also front-line witnesses to the prevalence of HIV myths -- even now, after decades of information and education around HIV. We've asked scores of people of African descent to share some of the most colorful, unsettling myths they've heard. Take a look at what they had to say -- and add some HIV myths of your own in the comment section below their responses.
Fortunata Kasege, Houston, Texas; Diagnosed in 1997
The craziest myth I've heard is people think that they can tell by looking at somebody. Most people think they're really good on telling who is HIV positive. And the truth is that it's really hard to tell by just looking at the person.
Chivuli Ukwimi, International Gay and Lesbian Human Rights Commission, Cape Town, South Africa
Apart from the stigma of, you know, you can get HIV by touching someone or by sharing cups -- which was like way, way, way back -- I think one of the craziest myths that I still see lingering on, especially in an African setting, is where men are being told that if they had sexual intercourse with a young girl, a young child, that the pure blood of a child will cleanse them of HIV. I mean, just to think of having sex with a minor -- and not even a minor; a child, a three-year-old, a four-year-old, a five-year-old girl. I think for me that's the craziest myth, and it's really a sad myth, because it has a resulted in a lot of defilement cases. I think that's really, really sad.
Antionettea Etienne, New York City, diagnosed in 1997
The craziest, most outlandish myth that I've heard about HIV is about a Hispanic person going to a santera to take the virus out of their body:
The smoke of cigars being blown on them and chicken blood being splattered on them and them lighting candles and stuff.
But I understand why a person of Latino descent would do so, because that is also part of my culture. They felt that brujería -- which is like witchcraft -- would help them get rid of HIV, but being a knowledgeable person in this field, I know that that would not work.
Unfortunately, because of that person's strong belief, that person died in the Bronx about seven or eight years ago, splashing some oil on candles and stuff: The candles caught on fire, and she got trapped off and was killed.
Eli Dancy, Black AIDS Institute, Brooklyn, N.Y.
One of the most outlandish myths I heard about HIV: Can I talk about the Magic Johnson thing -- the myth that he's cured?
I think that would be the most outlandish thing that I've heard: Magic Johnson went to Africa and he's found the cure for AIDS, and they're not telling any of us over here. It was said that they have it over there and they hand it out to rich people!
There are a lot of people nowadays who will argue that Magic Johnson is cured! [Laughs] But he still has HIV, and that's the bottom line. There's no cure right now, and that's the bottom line.
Oh, I've got a great myth that I've heard. I actually did an interview one time before -- it was for a radio show in California. They told me that HIV did not exist, period. People were not dying of HIV/AIDS, and the only way people were getting whatever disease that was killing them that they were saying was HIV was by taking the HIV test.
So the test would infect them?
Yes. They were saying that there is no HIV. It doesn't exist! There's no AIDS -- it's not a disease. People are dying from other complications of something mysterious they couldn't actually name. The show's host had a whole panel of people that were telling me that by me telling people to get tested for HIV, I was actually making people get infected with this mysterious disease that people thought was HIV.
Why do you think people want to believe things like this that are so ridiculous?
Everybody has their individual reasons. It could possibly be to make them feel better about the irresponsible things that they're doing in their lives. It could be to fill a gap for things that they don't understand.
Some people just always want to have an answer for something. The fact that HIV has no cure and there is no answer to where it has come from and how to get rid of it, people just figure it's something that they're going to make up the answer for. You say something, you get a couple of people to believe it, it starts to become a reality to you. You have people backing you up and saying, "You know what? You're right! There's no such thing as HIV! I had it and I'm cured now." They're not really cured, but they say, "I had it and I drank some orange juice and I'm cured now," or something like that.
You can get a group of people to stand up for anything, right down to the cults that get people to kill themselves by drinking Power Punch. I just think they have their own personal reasons, but it's more to fulfill a personal need versus trying to educate people on the real situation.
At the end of the day, people are dying. For somebody to come and say it doesn't exist -- what about all the hundreds of thousands of people, millions of people who have died already, or the families that have been touched and hurt by HIV?
I think that was definitely one of the craziest myths that I've heard. They were really passionate about that.
Christopher Roby, My Brother's Keeper, Inc., Ridgeland, Miss.
The most crazy, outlandish myth I ever heard about HIV has to be that you can get HIV from sitting on a toilet seat.
In the field that we work in, with African-American MSMs [men who have sex with men], one of our projects deals with myths and misconceptions around HIV facts, so that's probably the worst one I've ever heard.
Bethsheba Johnson, Peabody Health Center/AIDS Arms, Inc., Dallas, Texas
Two myths about HIV were really mind-blowing to me.
One was that the government is putting HIV into condoms to infect black people. Trying to kill everybody -- genocide.
The second one was if you have HIV and you have sex with a virgin, then that would get rid of your HIV -- that would cure it.
I've heard it quite a bit through the years, both in the United States and outside the United States.
Ingrid Floyd, Iris House, New York CityOne that we hear often from a lot of the teens that we work with that is always kind of baffling to us is that you can't get HIV through oral or anal sex.
It's because in their mind they relate it to getting pregnant. Because you can't get pregnant from oral sex or anal sex, you can't get HIV or you can't get STDs [sexually transmitted diseases] from those methods.
It's kind of shattering the myths that exist in their minds about what sex is and what types of sexual acts you can get HIV or STDs from.
Bernard Jackson, Northern Virginia AIDS Ministry, Falls Church, Va.; Diagnosed in 1999
I actually had a mother tell me that she had called one of those bathroom fitters so that she could have her bathtub cleaned because her son had taken a bath in her bathtub. She was afraid she could contract the virus.
It's actually more a myth about STDs [sexually transmitted diseases]. I had a patient that [laughs] had experienced some discolored discharge, but had found that his sexual partners liked it. And so, one of the misconceptions that he had was that basically when he was really heightened or really aroused that he could come and have yellow or green cum, and that that was actually kind of hot. [Discharge with a color or an odor may be a sign of an STD]
I think it's a pretty big misconception! I would say that that's my craziest one about STDs. The one about HIV, which is actually kind of sad, which I've heard from a lot of West African immigrants, is that if you have sex with a virgin, that it'll cure you of your HIV.
So there's a funny, strange one; and then a sad and disheartening one that just proves that our efforts to get out education are not over by any means.
Kenyon Farrow, HIV/AIDS Advocate, New York City
There are of course the AIDS denialist rumors that continue to float around the Internet.
I have had several people e-mail me -- or post comments to my blog when I blog about HIV stuff -- that HIV may not cause AIDS and all of these sorts of things that float around the world. I think that's one of the biggest myths.
The second big myth is that men on the down-low are this missing link between why there are high rates of HIV among black gay men and high rates of HIV among black women. That is a huge myth that continues to float on radio shows in the black community and even in the popular press. There are studies and data that show that that's not true.
The third myth related to that is that men in prison -- men who are locked up in prison -- contract HIV in prison and then bring it home to their wives and girlfriends as another major purveyor of HIV infections among black women. That also is not true. Ninety percent of people who have HIV in prison were positive when they came to prison. It's actually over 90 percent -- it's about 94 percent.
Those myths float around and, particular to the prison question, actually prevent us from being able to focus on the impact of mass imprisonment in and of itself as a driver of HIV infection.
I think those are three of the biggest myths out there that we need to work very hard to dispel.
Angela Green, MPH, Executive Director, IRIS Center, San Francisco, Calif.
That you cannot be an effective, qualified advocate for HIV/AIDS unless you are HIV positive.
Nikki Mawanda, Transgenders, Intersex and Transsexual Uganda, Kampala, Uganda
The weirdest thing I've ever heard about HIV is, back home, they used to say that when someone has HIV that he's been bewitched. And for me, it's . . . I mean, many people died out of it, but it's so weird. Instead of getting medication, people end up going to traditional shrines.
Nyrobi Moss, SisterLove, Inc., Atlanta, Ga.
Wow. I've heard some stuff. I've been doing this a while. [laughs]
The interesting thing is I find that in older adults, and old people of color in the South, their biggest thing is: "If I share forks with her, if I come over to her house and she's cooking [and she has HIV], can I get HIV?" The whole cooking business is always interesting.
Another thing that's always interesting to me is the fact that you find a lot of men that are like, "Oh, you know, I'll just have oral sex with her and it's cool."
We don't necessarily look at oral sex as another form of sex. We know anal is real sex and we know vaginal is real sex, but we kind of play oral down a lot. We have a lot of people that would engage in unprotected oral sex, and then turn around and try to put a condom on to have sex, when they've already shared body fluids. So it's like, "It's just head. It's all good," not looking at all the other things that can go along with just getting oral sex.
One of the other ones -- we actually did this one when we were doing risk assessment. The risk assessment game goes, "If I were sitting in a hot tub naked with someone who has HIV, can I get HIV?" My sister was like, "Yeah, if they're sitting in there naked, their juices are just going to be flowing out to you." So I'm like, yeah, you can't get HIV through osmosis. You're not going to get it by sitting in a hot tub naked with somebody. Nobody's juices are going to come crawl over to you in a hot tub.
I did a youth health fair in a charter school in Manhattan. Some of the things that the young people told me, it was incredible. Like a young man who said he has sex with his boxers on and he won't get any diseases. Or the one young lady who said, "Oh, if I drink bleach, a teaspoon of bleach in a glass of water, I can wash away all the infection in my body." Not only will she not wash away the infection, but she might wash away her life drinking bleach!
David Bond, Project Awareness, Las Vegas, Nevada
One of the many myths that I'm currently hearing about it is that you can die from HIV. You die due to complications of it. You don't die because of HIV.
Also, that I hear that it's cured, and that people are saying that you can't get it anymore.
Diane Campbell, New York City, diagnosed in 2003
That it's a death sentence. That it's the end, but no; it's a new beginning. And it's wonderful to be alive. That's what HIV taught me. Every day that God gives you breath and gives you life is a day to rejoice.
Christopher Ervin, Aniz, Inc., Atlanta, Ga.
What's the craziest myth I ever heard about HIV? That's a long list that I could choose from. But one that is always of a concern is that men can't get HIV from women.
The craziest myth I've ever heard about HIV has to do more with a cure for HIV than about transmission or infection.
I've had two patients in the past year, one white, one black, one male and one female, who have come to me with a cure for HIV that involved mixing a potion of mercury, and some herbs, and some leaves and some other things. And that if you drink it, you'd be cured of your HIV. So that is the most outlandish thing I've heard so far.
Michelle Lopez, Brooklyn, N.Y., diagnosed in 1991
Well, I just think it's outrageous that people still think that you can hug someone, or be in the room with someone, and contract HIV. I don't have to give the crazy, wacky stuff like people thinking, you know, the government made HIV, because for me it's outrageous that people are still doing the things that can put us at risk, knowing the information we have out there about how HIV is transmitted.
Sharon Gambles, San Francisco, Calif.; Diagnosed in 1989
It was the slobber. That was the craziest thing I heard about HIV; you can get it from saliva. This made me really do some research, because kissing, you know, spitting -- it's like you might as well say it's airborne, if you're saying it's coming from saliva. I know that HIV lives in a lot of fluids, but it's not enough in saliva to give somebody HIV. There hasn't been one documented case.
Devin T. Robinson X, National AIDS Awareness Poets
The craziest myth I ever heard about HIV is that you can get it from mosquito bites.
Sherri Smith, Ebony Sisters Campaigning for AIDS Prevention Education (ESCAPE), Columbus, Ohio
I think for me, even though it's been said time and time again, is that the government put this out here to kill black people. And it's outlandish to me because I see a whole bunch of white people dying. So somebody messed up on that myth.
Troy Ray, Hartford Gay & Lesbian Health Collective, Hartford, Conn.
The most craziest I have heard is this one client stated that she heard that people that are HIV positive they all smell like shit. She told me to smell her because she smelled shit and that's the reason why she came in to get tested. I can't make this stuff up.
Brenda Lee Curry, New York City, diagnosed in 1985
The craziest, most outlandish myth I've ever heard about HIV is that you can get HIV from using toilet paper.
I've heard somebody say that, "I went to my cousin's house. You know he has AIDS. And I had to go to the bathroom, but I didn't want to use his toilet paper because he has AIDS. He touches the toilet paper to use the bathroom, so I know that it's on that paper."
Liam Osbourne, World AIDS Campaign, Leiden, The Netherlands
The craziest myth I've ever heard about HIV is that it can be transmitted by sharing a cup with a person.
Patria Alguila, Miracle of Love, Orlando, Fla.
The craziest myth: I always think about monkeys and government -- those myths that that's where HIV came from.
Patricia Shelton, Peer Educator and Consultant, Bronx, N.Y., diagnosed in 1991
The craziest myth that I've ever heard about HIV/AIDS is that only gays and black people who are or were bad can get it -- that you definitely had to be a drug addict, somebody who walked on the wild side, or gay. But, say, suburban people, people who are in the church, people who are working -- productive members of society -- cannot get it.
Gloria McCall, AWARE Worldwide, Virginia Beach, Va.
With all of my years of being in the field from 1983, the craziest thing that I've heard about HIV -- and I'll tell you, I just heard it recently and I was appalled and speechless, and this came from a nurse: I was in a class, and she was talking to the instructor, telling the rest of the class that "You know what people living with HIV/AIDS do; they will bite themselves and spit the blood at you if they get mad because they want you to become infected with the virus."
I was so appalled and so speechless that I couldn't even address it at that time. When something is emotionally affecting me, I've learned to back off and take a couple of minutes before I go and talk about the issue. When I did that, and even went to her to tell her, she still was not receiving it from me that that is truly a myth, and to spread it is such an injustice to people living with HIV/AIDS.
Jahlove Serrano, New York City; Diagnosed in 2005
One that I've heard was that you get HIV through ketchup. Some rumor that someone that was positive was putting their infected blood into the ketchup bottle and, you know: "Watch out for ketchup because it's infected with HIV."
I feel like we shouldn't scare people. I feel like we should enlighten people on the situation and take a lot of burdens off people as far as what is risky behavior, what's high-risk behavior or what is behavior period. And I think that's what we should be implementing.
Danielle Phillips, Atlanta, Ga.
The craziest myth I've ever heard about HIV is that it's only a gay man's disease.
Gloria Smith, Social Worker, Connecticut
Talking about myths, I think the greatest one I've heard about AIDS, being from Africa, is that AIDS is Western propaganda: It's not real, it's a myth.
Why do people say that?
I think because of lack of education and lack of awareness and ignorance.
Why would they think people in the West would want to spread this propaganda?
For political gain. For monetary gain. For control.
Winston Clark, The Gathering Center, Orlando, Fla.
The craziest thing I've heard about HIV is that straight people can't get HIV. HIV may be common in the black LGBT community, but straight people think that they can't get the disease. Because it's not a gay disease; it's a disease that doesn't discriminate based on orientation, or anything. So that's the craziest thing I ever heard about it.
Kizmet Cleveland, Americorps VISTA Member, Cleveland, Miss.
What is the most outlandish myth I've heard about HIV? It's that you can get it from spit or mosquitoes ...
... even toilet seats, or touching someone. I think that's one myth that I've heard a lot: that you can get HIV by just hugging or touching somebody.
Emilie Byron, New York City
I've heard people believe that if you already have HIV and your partner has HIV, then you don't have to worry about the virus if you both have it. You can have unprotected sex because you already have the virus.