Current Mental Health Challenges in HIV/AIDS: Disclosure, Identities, and Denialism

— Seth C. Kalichman

People living with HIV/AIDS who receive mental health services are likely to present with a broad array of psychosocial challenges including depression, anxiety, substance abuse and adjustment disorders. Not unlike individuals with other chronic and life-threatening conditions, people living with HIV/AIDS ride an emotional roller coaster as they face treatment decisions, physical decline, and the onset of debilitating illness. However, HIV/AIDS is distinguished from other serious illnesses by its unique social and psychological challenges. People living with HIV/AIDS confront an ever changing context of social stigmas, potential rejection from relationship partners, and continued discrimination. Changes in the trajectory of HIV disease have also brought greater longevity and therefore new identities to those afflicted by the disease. The HIV positive person also confronts a complex medical condition while sorting through a barrage of information that is often indistinguishable from misinformation.  Thus, in addition to the commonly expected psychological ramifications of HIV/AIDS, mental health practitioners must also deal with new challenges that emerge with an ever changing HIV/AIDS epidemic. Here I briefly describe three current challenges facing HIV positive mental health clients: managing HIV disclosure decisions, emerging identities, and HIV/AIDS denialism. 

Managing HIV Disclosures

The medical mainstreaming of HIV/AIDS may in time diminish AIDS stigmas and facilitate openness among people living with HIV/AIDS. Unfortunately, that time has not yet come. AIDS stigmas persist and people living with HIV/AIDS continue to experience discrimination. For example, in a recent study conducted in Atlanta, 65% of people living with HIV stated that they had not disclosed their HIV status because they feared discrimination (Kalichman et al., in press). Stigmas and the threat of discrimination pose the greatest barriers to HIV status disclosure (Simoni & Pantalone, 2005). An inability to disclose one’s HIV status to family and friends precludes accessing social support for one’s efforts to cope with HIV/AIDS. Not disclosing HIV status to sexual and drug using partners has been shown to predict higher risk behaviors and potential for spreading HIV. In several states, failure to disclose a positive HIV status to sex partners is a felony and a mental health professional that can identify potential uninformed sex partners will likely have a duty to warn. As someone living with HIV told me years ago, when it comes to practicing safer sex and protecting partners it is all about disclosure. When partners know each other’s HIV status they can negotiate safer sex in their relationship. But when a person with HIV chooses not to disclosure their HIV status they alone carry the burden of protecting their partner. For these and other reasons, HIV disclosure remains the most salient psychosocial challenges facing people living with HIV/AIDS.

Emerging Identities

Receiving a diagnosis of HIV infection is life redefining and leads to a new identify as a person living with HIV/AIDS. An HIV positive identity can transcend other central elements of one’s self-concept including race, ethnicity, gender, and sexual orientation. Within the population of people living with HIV/AIDS there are subgroup identities, such as those how are not yet symptomatic ‘HIV positive’ versus those who have fallen ill and advanced to ‘living with AIDS.’ The distinction between being HIV positive and having AIDS is based on one’s HIV disease carrying obvious psychological ramifications. People who are HIV positive are considered healthy with years to live, whereas people diagnosed with AIDS are considered unhealthy and nearing the end of a deadly disease. Another identity within the population of people living with HIV/AIDS is defined by their viral load status. Viral load is the index for estimating how active HIV is replicating itself in the peripheral blood system – a higher viral load means a more active disease state. Individuals whose peripheral blood viral load is below the levels of detection are told they have an undetectable viral load. In contrast, when HIV is detectable in the peripheral blood an individual is said to have a detectable viral load.

The goal of antiretroviral therapy is suppression of HIV replication to levels below detection. Having an undetectable viral load has created the latest identity among people living with HIV/AIDS.  Most people who have an undetectable viral load refer to themselves by saying ‘I am undetectable’ rather than stating they have an undetectable viral load. Because lower levels of virus in the blood can mean that HIV is less transmittable, being ‘undetectable’ has also come to mean that one is ‘non-infectious’. This notion was recently fueled by an official statement of the Swiss Health Ministry (Vernazza et al., 2008), which was nearly immediately rebuked by the United Nations AIDS Program and the World Health Organization (2008). Unfortunately, many people who have undetectable viral loads in their peripheral blood have detectable virus in their genital secretions, meaning that they may believe they are less infectious than they really are. Non-correspondence between blood and sexual fluid viral loads is most likely to occur when people are non-adherent to their HIV treatments and HIV is therefore not fully suppressed. More important are co-occurring sexually transmitted infections which elevate HIV viral load in sexual fluids while not affecting viral load in blood (Kalichman et al., 2008). People living with HIV/AIDS must be encouraged to maintain strict adherence to their treatments in order to fully suppress the virus and they should be informed that safer sex is necessary regardless of their viral load and other indicators of their health.   

HIV/AIDS Denialism*

People diagnosed with a life threatening and highly stigmatized condition such as HIV infection will understandably search for anything that will refute their condition. Sadly, there is a plethora of misinformation, fake cures, and myths that offer false hope to those who test HIV positive. Found mostly on the Internet, in books, and even in the mainstream media, claims of AIDS denialism have been spawned from rogue scientists such as Peter Duesberg and misguided popular writers such as Christine Maggiore. HIV/AIDS denialists claim that HIV does not cause AIDS, that HIV tests are invalid, and that HIV treatments cause illness and death (Kalichman, 2009). There is a growing following of these toxic mythologies as evidenced in a recent survey of 696 gay and bisexual men attending Gay Pride events in four US cities that showed 45% believe that HIV does not cause AIDS and 52% stated that there is a cure for HIV/AIDS that pharmaceutical companies are hiding because of profits (Hutchinson et al., 2008). HIV/AIDS denialism dissuades people from seeking HIV testing, encourages those who test HIV positive to disregard their diagnosis, and opens the door to quackery and fraudulent treatments including minerals to cleanse the blood and mega-doses of vitamins. Denialism has influenced policy makers by making its way into the halls of Congress as occurred during the 2008 Whistle Blower’s week which honored Peter Duesberg for telling the truth that AIDS is not caused by HIV. Denialism has even influenced heads of state, particularly South African President Thabo Mbeki who has used denialism as a basis for blocking access to HIV treatments (Natrass, 2007). These high level endorsements have emboldened denialists and have given their false hope credibility and access to mainstream media. The dangerous influence of denialism on the health decisions of people living with HIV/AIDS represents the latest challenge to the well-being of people living with HIV/AIDS.

Conclusions

The greatest challenges to treating the mental health ramifications of HIV infection change over the time. The timeless emotional and social consequences of HIV/AIDS include depression, substance abuse, and maladjustment which are now embedded within challenges posed by barriers to disclosure, emerging identities, and HIV/AIDS denialism. As daunting as it may seem, the ever evolving context of AIDS demands that mental health providers keep in step with the challenges facing their HIV infected clients. 

References

Hutchinson, A., Begley, E., Sullivan, P., Clark, H., Boyett, B., Kellerman, S. (2008). Conspiracy beliefs and trust in information about HIV/AIDS among minority men who have sex with men. Journal of Acquired Immune Deficiency Syndromes, 45, 603-605.

Kalichman, S.C. (2009). Denying AID: Conspiracy Theories, Pseudoscience, and Human Tragedy. Springer Books: New York.

Kalichman, S. C., DiBerto, G., & Eaton, L. A. (2008). Associations among HIV concentration in blood plasma and semen: Review and implications of empirical findings. Sexually Transmitted Diseases, 35, 55-60.

Kalichman, S.C., Simbayi, L.C., Cloete, A., Ginindza,  T., Mthembu, P., Cherry, C., Cain, D. (in press). Measuring AIDS stigmas in people living with HIV/AIDS: The internalized AIDS-related stigma scale. AIDS Care.

Natrass, N. (2007). Mortal Combat: AIDS Denialism and the Struggle for Antiretrovirals in South Africa. KwaZulu Natal University Press: Durban, SA.

Simoni, J & Pantalone, D. (2005). HIV disclosure and safer sex (pp. 65-94). In S.C. Kalichman (Ed.) Positive Prevention: Reducing HIV Transmission Risk Behavior among People Living with HIV/AIDS. Springer Science: New York.

United Nations Joint Programme on HIV/AIDS and World Health Organization. (February 1, 2008). Antiretroviral therapy and sexual transmission of HIV. Statement available from: http://data.unaids.org/pub/PressStatement/2008/080201_hivtransmission_en.pdf

Vernazza, P., Hirschel, B., Bernasconi, E., Flepp, M. (2008). Les personnes séropositives ne souffrant d’aucune autre MST et suivant un traitement antirétroviral efficace ne transmettent pas le VIH par voie sexuelle [In French]. Bulletin Med Suisses, 5:165-169. Available from: http://www.saez.ch

Correspondence regarding this article should be addressed to Seth Kalichman at seth.k@uconn.edu.

* For more on HIV/AIDS denialism see Kalichman, S.C. (2009). Denying AID: Conspiracy Theories, Pseudoscience, and Human Tragedy. Springer Books: New York. All royalties from the sale of this book will support the purchase antiretroviral medications for people living with HIV/AIDS in Africa: http://www.shallwego.net/ftf/index.htm.