Below is an excerpt from a new study published by Seth C. Kalichman, Lisa Eaton, & Chauncey Cherry in Journal of Behavioral Medicine
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Introduction
Fringe and extremist groups that challenge well-established historical and scientific facts have become increasingly visible, particularly on the Internet. Holocaust Deniers, for example, claim that Nazi Germany did not systematically kill 6 million Jews and Global Warming Deniers believe that climatology is a flawed science with no proof of greenhouse gases changing the atmosphere. Among the most vocal anti-science denial movements is AIDS Denialism, an outgrowth of the radical views of University of California biologist Peter Duesberg. Duesberg claims that HIV and all other retroviruses are harmless and that AIDS is actually caused by illicit drug abuse, poverty, and antiretroviral medications. Until recently, AIDS scientists have largely ignored denialists, stating that they are no longer relevant and are not a threat to HIV/AIDS treatment and care.
Unfortunately, ignoring AIDS denialists has not addressed the problem and AIDS denialism is flourishing as a result. AIDS denialism promotes the idea that HIV is harmless and cannot cause any disease, most certainly not AIDS. Some AIDS denialists claim that there is no proof that HIV exists at all. HIV antibody tests are said to be invalid because anyone can test HIV positive, people who do test positive do not develop AIDS, and there are people who develop AIDS who have never tested HIV positive. AIDS denialism rejects HIV treatments as toxic poisons that do more harm than good. The central tenant of AIDS denialism is that there is an ongoing debate among legitimate scientists regarding whether HIV even exists and if it does exist whether HIV causes AIDS. AIDS denialism intersects with AIDS conspiracy theories, and may impede HIV prevention and treatment.
The adverse effects of AIDS denialism have been most discussed in South Africa, where former President Thabo Mbeki gave equal credibility to AIDS Denialists and genuine AIDS scientists. As a result, the South African government delayed HIV testing and thwarted efforts to distribute antiretroviral medications. The result was devastating, with over 330,000 South Africans dying earlier than necessary from AIDS and over 35,000 babies needlessly HIV infected because medications that can prevent mother-to-child HIV transmission were not made available. Other African countries have followed South Africa by embracing AIDS denialism, such as Gambia where the President claims to cure AIDS with a potion revealed by his ancestors.
Recent research suggests that AIDS denialism is undermining HIV prevention and treatment in the US. One study of gay and bisexual men in five US cities showed that 45% of men agreed with the statement “HIV does not cause AIDS” and 51% of men agreed with the statement “HIV/AIDS drugs can harm you more than help you”. A study of people living with HIV/AIDS also found surprisingly high rates of AIDS denialist beliefs, with 17% of infectious disease clinic patients in Baltimore agreeing with the statement “HIV does not cause AIDS”. Wald et al. showed that AIDS denialist beliefs were most frequently endorsed by patients who were not being treated with antiretroviral medications, suggesting a vulnerability to AIDS denialist rhetoric.
The current study examined AIDS denialism beliefs in a community sample of men and women living with HIV/AIDS. We hypothesized that people living with HIV/AIDS who use the Internet will be more inclined to endorse AIDS denialism beliefs and that interest in misinformation taken from the internet will be associated with greater endorsement of AIDS denialist beliefs. In addition, we hypothesized that people living with HIV/AIDS who believe that there is a debate among scientists about whether HIV causes AIDS would demonstrate less use of antiretroviral medications, poorer treatment adherence, and poorer HIV-related health status.
Key Findings
Results showed that AIDS denialism beliefs were common in our sample with more than one in five participants endorsing at least one AIDS denialism belief. Comparisons of less frequent and more frequent internet users indicated a pattern of differences that confirmed our first hypothesis; AIDS denialism beliefs were more often endorsed by more frequent users of the internet. Participants who used the internet at least weekly were significantly more likely to believe that there is a debate among scientists about whether HIV causes AIDS, the central tenant of AIDS denialism. More frequent internet users were also significantly more likely to believe that there is no proof that HIV causes AIDS. More frequent internet users also endorsed treatment denialist beliefs, particularly the notion that HIV is treatable using herbal and non-toxic natural remedies.
Interest in AIDS denialism websites
Ninety-seven (28%) participants indicated that they planned to look up additional information from the AIDS denialist website of Rath International after reading the passage. Participants (N = 128, 37%) also planned to look up additional information from the AIDS denialist website by Jonathan Campbell. As a point of comparison, 147 (42%) planned to look up nutrition information from Tufts Medical School. As expected, believability and trust ratings were higher among participants who planned to look up additional information from each of the three website passages. Believability and trust ratings for the two AIDS denialist websites were lower than Tuft’s medical website.
Participants who planned to look up additional information from Rath International and Jonathan Campbell endorsed greater AIDS denialism beliefs than those not planning to look up additional information. In contrast, the difference between participants who did and did not plan to look up information from the Tufts (control) website did not differ on AIDS denialism beliefs.
AIDS denialism beliefs and health outcomes
Confirming our second hypothesis, individuals who believed that there is a debate among scientists as to whether HIV causes AIDS were significantly less likely to be receiving antiretroviral therapy. In addition, those who were taking medications and endorsed AIDS denialism beliefs were significantly less adherent to their medications. Participants who endorsed the central AIDS denialism belief that there is a debate among scientists had experienced more HIV related symptoms and were less likely to have an undetectable viral load compared to participants who did not endorse this belief.
Finally, among participants who were not currently taking antiretroviral medications (N = 140), we found those who believed that scientists are debating whether HIV causes AIDS endorsed reasons for not taking medications that are propagated by AIDS denialism; simply not wanting to take antiretroviral medications and not trusting the safety of HIV medications (see
Conclusions
Results of the current study indicate that beliefs aligned with AIDS denialism were common in our community sample of people living with HIV/AIDS. Although overall endorsements of multiple denialism beliefs were low, more than one in three participants endorsed the belief that there is a debate among scientists as to whether HIV causes AIDS and one in five agreed with the statement that there is no proof that HIV causes AIDS. Participants also endorsed statements consistent with AIDS denialist views on HIV treatments including that antiretroviral medications do more harm than good. Endorsements of AIDS denialism-related beliefs were similar to those observed in other research with HIV positive men and women and are consistent with findings from community surveys with gay men in major US cities. Exit interviews confirmed that participants understood the denialism belief items. Although participants did not represent 'AIDS dissidents' per se, their beliefs suggest a vulnerability to misinformation and fraud.
The association between internet use and AIDS denialism beliefs occurred despite better education and more accurate AIDS knowledge. One potential explanation for this paradoxical finding is that knowledge is not the same as beliefs. More frequent use of the Internet has the potential to expose users to both accurate and false information. In our sample, the internet was commonly used to find treatment information and these internet search functions practically assure exposure to AIDS denialist websites. We found that participants who expressed interest in accessing additional information from recognized AIDS denialism websites also held stronger AIDS denialism beliefs, an association not observed with our control website passage. Trust and believability ratings were also higher than would be expected by the number of denialism beliefs that were endorsed. One explanation for the discrepancy is that participants may have been more willing to endorse trusting information than openly endorsing ideas that clearly fall outside the mainstream. Given the difficulty that many people living with HIV/AIDS face in discriminating quality health information from quackery and fraud online, the vulnerability to AIDS denialism among AIDS affected populations is apparent.
The current study is among the first to show adverse health outcomes associated with AIDS denialism beliefs. Controlling for potential confounds, we found that individuals who endorsed the core belief that there is a debate among scientists as to whether HIV causes AIDS were less likely to receive HIV treatments and more likely to refuse medications. Furthermore, participants who believed there is a debate and were being treated with antiretroviral medications were less adherent to their medications. Agreeing that there is a debate about whether HIV causes AIDS was also related to experiencing more HIV-related symptoms and having a detectable viral load. The false hope that comes with believing that scientists do not agree that HIV causes AIDS therefore has the potential to undermine HIV prevention and treatment.
The results of this study highlight the complexity of HIV disease and the difficulty many patients experience in trying to understand their diagnosis. Simple measures of AIDS knowledge, such as the one used in this study, may fail to capture the nuances and subtle aspects of misinformation. Determining the trustworthiness of information sources is also problematic, with labels and credentials easily confused for credibility. Because the current study did not examine the origins of AIDS denial, future research is needed to trace the individual and cultural roots of denialism beliefs. Further research is needed on how vulnerable patients understand their diagnoses, interpret health information, and format health beliefs. Mixed designs of qualitative and quantitative research may be particularly useful in gaining insight into these cognitive and affective processes.
Openly discussing the baseless views of AIDS denialists and exposing the pseudoscience behind AIDS denialism is key to diluting its impact. Individuals exposed to the false hope that their HIV positive test result is meaningless may reject these claims if they are aware of the source and recognize they are false. Improving critical thinking skills among people who use the internet to seek health information is essential to reducing the harms of AIDS denialism. Interventions aimed at improving internet health consumer skills have demonstrated positive effects and can directly address AIDS denialism. Finally, providers should discuss the evidence-base for HIV treatments and standards of care with their patients. Leaving patients on their own to determine the quality of health information they encounter on the Internet leaves many vulnerable to misinformation, denialism and fraud. Ignoring AIDS denialism undermines our best efforts to test, engage, and care for people living with HIV/AIDS.
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