Over decades, we have made considerate advances to turn HIV into a chronic but manageable condition. Despite these advances, people living with HIV/AIDS (PLWHA) continue to endure discrimination and stigma from their communities, families, and professionals. Consequently, millions of PLWHA are impeded from accessing preventative and treatment services (World Health Organization, 2011). In 2014, UNAIDS cited the fear of stigma and discrimination as the primary reason individuals were reluctant to have an HIV test, take HIV medications such as antiretroviral treatments (ART) and disclose their HIV status. As researchers continue to explore the effects of stigma on the mental well-being of PLWHA, they have found significant evidence of the association between HIV related stigma and social outcomes such as heterosexism, racism, and poverty (Earnshaw, V., Bogart, L., Dovidio J., Williams, D., 2013).
For PLWHA, mental health conditions are among the most common obstacles regardless of ethnicity or gender and can impact behaviors related to accessing healthcare services and thereby effecting ones health and overall quality of life (Yi, S., Chhoun, P., Suong, S., Thin, K., Brody, C., & Tuot, S., 2015). According to HIV.gov (2019), people who are HIV positive are at an increased risk of developing an anxiety, cognitive or mood disorder, and depression. A multi-site cross sectional study estimated that individuals who are receiving care for a mental health condition are four times as likely to be living with HIV as compared to the general population (M.Blank et al., 2014). In South Africa, researchers conducted a national survey and found that 44 % of PLWHA had a diagnosable mental health condition; depression accounted for 30 %, major depressive disorder 11 %, and alcohol abuse disorder for 12 % (Freeman M, Nkomo N, Kafaar Z, Kelley K., 2008). The American Psychiatric Association and Office of HIV Psychiatry reported results from a study that found 19% of males involved in psychiatric care were HIV positive and of 320 patients between the ages of 20 and 40, AIDS was the leading cause of death (2012).
HIV stigma refers to negative beliefs, feelings, and attitudes toward PLWHA while HIV discrimination refers to the unfair and unjust treatment based on one’s real or perceived HIV status (Centers for Disease Control and Prevention, 2019). According to UNAIDS (2015), in a study conducted across 35% of countries with available data, more than 50% of people reported that they held discriminatory attitudes toward PLWHA. In 2012, researchers conducted surveys to identify attitudes toward PLWHA and found that many still associated HIV/AIDS with things such as death, fear, promiscuity, and irresponsibility while the majority of participants also admitted to actively avoiding PLWHA (Herek, Capitanio, & Widaman, 2002).
Perceived fear of stigma and discrimination is one of the primary reasons people avoid getting an HIV test. With reluctance to taking an HIV test, people are placed at an increased risk of being diagnosed late meaning the virus may have progressed to AIDS making treatments more difficult as well as increasing the chance of transmitting the infection to others. Being diagnosed with HIV/AIDS involves many lifestyle changes including strict medical treatments, changes in nutrition, and learning how to navigate the medical and social aspects of being HIV positive. These changes can act as a consistent reminder to PLWHA of their status and the stigma associated with the illness making it difficult to adjust. Research has found that PLWHA are diagnosed with depression at a rate of two to five times higher than individuals who are HIV negative and are diagnosed with generalized anxiety disorder almost eight times the rate of someone who is HIV negative (Bing, et al., 2001).
Photo Source: National Minority AIDS Council |
During the early years of the epidemic many false beliefs such as HIV/AIDS is the result of moral fault or personal irresponsibility, its only transmission is through sex, and an association of death were developed (Varni et al., 2012). Regardless of advances in medical treatments and public education, many of these perceptions are still found throughout communities. According to the People Living with HIV Stigma Index, findings from 50 countries indicated that about one in every eight PLWHA is being denied health services due to discrimination or stigma (UNAIDS, 2017). In South Africa, a group of women were given access to Vaginal gels and pills as a means of HIV prevention. Many of the young women involved in the study reported fear of using these products because they may be perceived as HIV positive (The Well Project, 2016). Another study, conducted in Mexico found a strong correlation between self-stigma and having never been tested for HIV which included the perception of HIV testing as being associated with homosexuality (Pines, Meza, EV, et al., 2016).
Stigma against PLWHA can be seen in hospitals, communities, families and in our court system. Currently, there are thirty-three states and two U.S. territories that have HIV-specific statutes criminalizing the nondisclosure of one’s HIV status and exposing others to the virus (Lehman, Carr, Nichol, Ruisanchez, Knight, Langford, et al., 2014). Many of the statutes include severe punishments including 25 years to life in prison for being accused of nondisclosure. While many states have included enhancements adding time in prison or additional punishments for people who have already been imprisoned such as exposing a public safety officer to bodily fluids and in some cases, this extends to urine and saliva (Harsono et al., 2017).
Although many states passed HIV exposure laws in the 1980’s, the passing of the Ryan White Care Act in 1990 was pivotal in developing US HIV exposure laws (Harsono, Galletly, O’Keefe, & Lazzarini, 2017). In order to receive federal funds, one of the conditions of the Ryan White Care Act was to require that all US states have a legal mechanism to prosecute individuals who were knowingly exposing others to the virus.
For countries with laws, rules, or policies that discriminate against PLWHA there is the risk of further alienating and excluding individuals and therefore reinforcing stigmatization surrounding HIV/AIDS. UNAIDS (2014) has reported that there are currently 72 countries with laws aimed at prosecuting PLWHA. There are currently 17 countries where upon discovering one’s positive status, individuals are at risk for deportation, in 35 countries there are laws that restrict one’s entry and residency for PLWHA, and in 5 countries PLWHA are completely banned from entry (UNAIDS, 2015).
Many of these laws undermine public health efforts to prevent further exposure to HIV by increasing stigma and discrimination. Through the criminalization of HIV, we are perpetuating a stigma that deters people from getting tested and we are placing the responsibility of prevention on the persons living with HIV/AIDS. Research on the efficacy of HIV exposure laws have repeatedly found little evidence of any protective benefits of these laws. In one study, researchers found that awareness of states HIV exposure laws was not associated with any HIV prevention related behaviors while another study found no association between one’s residence in a state with HIV exposure laws and the number of unprotected sexual partners or sex without prior HIV status disclosure (Harsono, et al., 2017). Delvande, Goldman, and Sood (2010) conducted a multi-state sample that found evidence to support the concern that HIV exposure laws actually inadvertently deter PLWHA from disclosing their HIV status and for people living in states with a greater than average number of HIV related prosecutions, they were less likely to disclose their positive status to their partners. Many not for profit organizations throughout the United States such as Lambda Legal have been working diligently to impact public policy at a local, state, and federal level to help protect and advance the rights of PLWHA. In their publication “15 Ways HIV Criminalization Laws Harm Us All” they outline the way these laws harm public health, resulting in unjust prosecutions, and primarily serve to stigmatize and oppress PLWHA.
Photo Source: Equip Health |
Recognizing that HIV-related stigma acts as a barrier to both engagement and prevention, Turan, Hatcher, Weiser, et al., (2017) designed a conceptual framework that highlights the dimensions of HIV related stigma to identify the mechanisms by which stigma leads to worse health outcomes for PLWHA. Turan et al. found that stigma can have negative impacts on the health of PLWHA both directly (physiologically) and indirectly (engagement in care behaviors). The researcher’s framework recognizes the effects of stigma at both a structural level and an individual level. For example, if students decide to specialize in less stigmatized diseases or work in more affluent neighborhoods we loose a great amount of resources at a structural level; whereas, at an individual level through internalized stigma and micro level mechanisms such as depression, PLWHA are at a higher risk for negative health outcomes. Understanding the dimensions of stigma and its effects on populations can assist healthcare professionals in treating their consumers more effectively and recognize new areas for care.
Limited attention has been given to research on the linkage between HIV related stigma and discrimination and the mental well being of PLWHA. By furthering research, we can learn how to develop more effective community-based interventions that aim at reducing stigma and discrimination and assist PLWHA to cope with obstacles facing their physical and mental health. Increasing the quality of HIV care, revising health policies and legal protections, as well as reviewing strategies for reducing stigma are just some of the ways we can we can begin working to reduce false perceptions of PLWHA and create a more inclusive atmosphere. We must also work to address the stigmatizing and oppressive laws that create an environment where they can be used as coercive tools, where a false accusation is used to manipulate the PLWHA, or where confidentiality is compromised when your partner or healthcare professional share your status (Lambda Legal, 2006). Like the framework posed by Turan et al. (2017), we must address it structurally and individually.
References:
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- Centers for Disease Control and Prevention. (2019). Dealing with stigma and discrimination. Retrieved from: https://www.cdc.gov/hiv/basics/livingwithhiv/stigma-discrimination.html
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Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.
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