African American people’s AIDS conspiracy beliefs best understood in terms of social anxiety and distrust, not ignorance

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The idea that AIDS was created as part of a government-led conspiracy to decimate the African American population remains salient to a significant minority of black people, according to qualitative research published in the January edition of the American Journal of Public Health. The researcher argues that such rumours and narratives are the product of a deep-seated feeling of distrust towards the government, born out of African American people’s history, and are therefore particularly difficult to change. People holding these beliefs are unlikely to be reassured by factual information from sources they consider to be untrustworthy.

Jacob Heller’s sociological study was based on two sources of data. Firstly, newspaper articles, blogs, television shows, comedy routines and other media that made reference to HIV/AIDS rumours or conspiracy narratives. Secondly, six focus groups conducted at a college in New York state in which all participants were of the same ethnic group – either white, African American or Hispanic. As a research methodology, focus groups can shed light on the shared understandings of people who belong to the same social group as well as the manner in which individuals are influenced by their peers.

There were marked differences in the discussions which took place in the different focus groups. Conspiracy theories and rumours rarely came up in the white and Hispanic groups.

Glossary

focus group

A group of individuals selected and assembled by researchers to discuss and comment on a topic, based on their personal experience. A researcher asks questions and facilitates interaction between the participants.

consent

A patient’s agreement to take a test or a treatment. In medical ethics, an adult who has mental capacity always has the right to refuse. 

anxiety

A feeling of unease, such as worry or fear, which can be mild or severe. Anxiety disorders are conditions in which anxiety dominates a person’s life or is experienced in particular situations.

cure

To eliminate a disease or a condition in an individual, or to fully restore health. A cure for HIV infection is one of the ultimate long-term goals of research today. It refers to a strategy or strategies that would eliminate HIV from a person’s body, or permanently control the virus and render it unable to cause disease. A ‘sterilising’ cure would completely eliminate the virus. A ‘functional’ cure would suppress HIV viral load, keeping it below the level of detection without the use of ART. The virus would not be eliminated from the body but would be effectively controlled and prevented from causing any illness. 

natural history

The natural development of a disease or condition over time, in the absence of treatment.

But Heller noted a recurring theme in African American discussion of HIV and AIDS, found both in the public discourse and during his focus groups. For example, in 1992 the film director Spike Lee said:

“I’m convinced AIDS is a government-engineered disease. They got one thing wrong, they never realized it couldn’t just be contained to the groups it was intended to wipe out. So now it’s a national priority. Exactly like drugs became when they escaped the urban centers into White suburbia.”

In one of the African American focus groups, conducted in 2012, one woman said:

“I heard that [the government] took people, Black people, gay people, and made them do research... experiments, and said, ‘You guys will get paid for this’ and actually they’re given the virus.”

The researcher noted the “remarkable durability” of this narrative over at least a twenty year period. The country’s government, the principle institution charged with tackling HIV and AIDS, is instead blamed for the creation of the disease and ascribed genocidal motives.

He notes numerous other instances of public discussion of these ideas, frequently but not only in the earlier years of the epidemic. The Nation of Islam leader Louis Farrakhan described AIDS as a ‘race-targeting’ weapon intended to kill African Americans; an aide to the mayor of Chicago was fired after stating that Jewish doctors were infecting African American infants with AIDS; and mainstream celebrities Will Smith and Bill Crosby lent credence to the idea of AIDS being man-made.

Moreover the ideas were still prevalent in the 2012 African American focus groups. In particular, they had an impact on acceptance of HIV prevention work. For example, needle exchange programmes were sometimes understood as promoting drug use in black communities or as providing contaminated materials:

“How do you know? You see, it goes back to the whole idea of they’re purposely spreading this. How do you know they didn’t drop some HIV into those needles?”

Similarly it was suggested that the condoms distributed for free could be faulty or could have had holes poked in them.

Focus group members expressed scepticism about HIV treatments and the healthcare that is available to them. When asked about Magic Johnson, the basketball star who is the most prominent African American living with HIV, many felt that his wealth had given him access to special medical treatment:

“His private doctors are probably recommending different things from what we could do because we can’t afford them. Why am I giving you $200,000 pills when you can’t afford $200,000 pills?”

Several respondents believed that Magic Johnson had received a “cure”, something that pharmaceutical companies were withholding from ordinary people.

The author notes that while it is usually assumed that there is a simple relationship between scientific knowledge, education, behaviour change and reduced infection rates, this can only work if people trust official sources of information. Moreover, previous studies in the United States and South Africa have shown that people who accept conspiracy beliefs are less likely to use condoms, test for HIV, or adhere to HIV treatment.

He argues that rather than seeing conspiracy beliefs as evidence of ignorance, or as something which could be corrected with factual education, they are better understood as signs of profound social and historical problems. “The source of conspiracy theory rumors about the origins of HIV/AIDS within the African American community, as with any rumors, is not ignorance, but distrust combined with high social anxiety,” he says.

Specifically, the salience of these narratives is related to African American people’s history, including slavery, denial of civil rights, incidents of abuse by medical professionals, inadequate health services and the very high prevalence of HIV in African American people.

Another researcher, Nicoli Nattrass recently provided a more detailed analysis of the historical events which may have made conspiracy narratives appear more plausible.  The American army base which is sometimes described as having created or propagated the virus (Fort Detrick, Maryland) was genuinely the site of a biological weapons programme, researching the military application of infectious microorganisms. In 1975 a Congressional committee heard evidence of the CIA conducting research that involved administering LSD to mental patients, prisoners, drug addicts and prostitutes (many of whom were black) without their knowledge or consent. During the 1970s the public learned about the Tuskegee study which had involved leaving rural African American syphilis patients untreated for decades in order to study the natural history of the disease.

But she also outlines evidence that the conspiracy theory of the US army having manufactured HIV as a biological weapon can be traced back to a real conspiracy – a disinformation campaign by the the Soviet Union and East Germany intended to foster anti-Americanism. KGB and Stasi officers apparently first planted the story in Indian and Russian newspapers in the early 1980s before it was picked up by media around the world.

Jacob Heller argues that the take-up of conspiracy theories tells us about the fraught relationship between African Americans and mainstream society, including a perception of health professionals as agents of white power. They may be understood as strategies used by the disempowered to reconceptualise and resist mainstream worldviews. The rumours provide another explanation for the HIV epidemic in African American communities – rather than seeing HIV as a social and health problem with complex causes, it is blamed on an external and intentional adversary.

However Nicoli Nattrass argues that such an analysis does not take sufficient account of individual agency, the ability of individuals to influence events. Her position is strongly informed by the experience in South Africa, where politicians such as Manto Tshabalala-Msimang and Thabo Mbeki bear a clear responsibility for strengthening AIDS denialist views and withholding life-saving medication from millions of people.

Moreover individuals in affected communities mobilised in the Treatment Action Campaign to challenge denialist views. She notes that in general conspiracy beliefs are minority views – most people in the same socioeconomic context do not hold them.

“Understanding the salience and reach of AIDS conspiracy theory requires both a fine-grained analysis of the social and historical context which renders AIDS conspiracy theories thinkable and a critical appreciation of the role of cultural agents in promoting them,” she says.

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