From Businesswoman to Banana Vendor

HIV-related stigma can be broadly classified into physical, social, verbal, and institutional discrimination (Fig. 1). It has been shown to have a negative impact on medication adherence, mental health, and disclosure of HIV status [2–4]. In Tanzania, 4.7% of the population ages 15–49 are living with HIV/AIDS [5]. Approximately 63–83% of people living with HIV/AIDS (PLWA) are receiving antiretroviral therapy (ART) – there is a significant opportunity to improve access and adherence [6]. During a recent field visit to Mwanza, Tanzania for research and teaching projects, our team met Anne, a 54-year-old Tanzanian woman with HIV, whose life experiences reinforce the impact of HIV-related stigma in the developing world. An interview was conducted in Swahili and then translated into English, forming the basis for this field note (A pseudonym is used to protect privacy.).Fig. 1: Causes, manifestations, and effects of HIV stigma.Adapted with permission from [1].Prior to her diagnosis in 1990 at the age of 28, Anne owned a local restaurant that provided financial support for her husband and three children. She tested positive in 1990 after her husband died of HIV, but she refused to disclose her HIV status to her children until 1993. She feared that stigma would negatively influence her family dynamic causing a rift between her and her children. Delaying the disclosure of HIV status is common, and it can propagate a vicious cycle of new infections and poor health practices such as unprotected sex [4]. Family cohesiveness, which can influence social and emotional support, is higher among families whose parents disclose their HIV status to their child (ren) compared with those who do not [7]. Further, parents who disclose their status to their children are more likely to attend clinic appointments [8] and have less anxiety and depression [9]. The fear of parental disclosure to children is a barrier that should be addressed to promote healthy family dynamics. Indeed, parental disclosure may be critical to develop culturally appropriate interventions in sub-Saharan Africa and other areas where HIV/AIDS is prevalent [10]. In certain regions of South Africa where such interventions have already been piloted, disclosure rates have improved [11,12]. Shortly after community members became aware of her HIV status, Anne was forced to close her restaurant because of declining business. She attributed her restaurant's decline to public fear of HIV transmission via food and utensils. This irrational fear resulted in institutional stigmatization, or treatment in an institutional setting that identifies a person as having HIV and results in negative outcomes for the person such as loss of livelihood and damaging depiction in the media [1]. Today, Anne earns a minimal income selling bananas part-time in local markets to make a living. Anne's initial loss of livelihood and HIV-positive status resulted in depression. She reported that she was suicidal and felt that her life had no meaning. It is estimated that approximately 10–20% of HIV-infected individuals in sub-Saharan Africa suffer from clinical depression [13–15], with another 20–40% having depressive symptoms [16]. Further, according to a report from WHO and Denmark's development cooperation under the Ministry of Foreign Affairs of Denmark (DANIDA), out of the 10 000 severely mentally ill patients in Tanzania, barely one-fifth are able to follow-up with their psychologists for a year [17], indicating that access to mental healthcare in Tanzania is lacking. Depression can negatively impact HIV management because of its negative influence on PLWA self-efficacy and motivation for medication adherence [18]. By not adhering to their medications, PLWA are at greater risk for developing lower immune function, higher viral load, poor response to ART, and greater mortality [19–24]. Hence, the alleviation of depression may improve ART adherence and clinic attendance, because of increased self-efficacy and motivation in PLWA [18]. Although not much is known about HIV and mental health in sub-Saharan Africa [25], more research and investment in this area is needed to improve health outcomes in developing nations. Beliefs that lead to HIV-related stigma are not limited to developing countries like Tanzania. Public health interviews and surveys carried out in the United States in 2016 found that many HIV-infected African-American women in the south felt stigmatized by friends and family members [26]. Like Anne, many of these women experienced workplace or institutional discrimination; even if the discrimination was identified as a human rights violation, they often would not take legal action because of their disempowerment and financial instability [26]. Similarly, our study participant could not recover her business after it failed and had no legal recourse to fight discrimination. Instead, she sought out a new support system on her own, through educational HIV seminars, counseling, and her faith. After she was able to manage her depression, Anne was inspired to become a home-based HIV counselor. She visits patients in her local region to provide them with HIV education, advice, and emotional support. She reports that about one in five of her clients experience significant stress because of their HIV status and attributes much of this HIV stigma-related stress to financial hardship. This was certainly the case for Anne in the initial years of her diagnosis. Anne believes that societal discrimination has reduced dramatically since her time of diagnosis. She advocates for widespread HIV education via media in the form of printed materials, in addition to training more home-based counselors to reduce HIV-related stigma. The outcomes and cost-effectiveness of such an intervention, which included counseling and access to HIV testing, was recently studied in rural South Africa [27]. In a comparison between a clinic-based versus home-based HIV counseling and testing, home-based counseling and testing was more effective in both measured outcomes and cost-effectiveness [27]. Home-based HIV counseling and testing may be an efficient option for developing countries such as Tanzania that have rural populations and healthcare personnel shortages [27]. Furthermore, reducing HIV-related stigma at its core potentially could be accomplished through a group-based behavioral intervention, which was piloted with some success in 2014 with HIV-infected youth in various US locations [28]. HIV/AIDS takes a physical, financial, and emotional toll on patients, communities, healthcare providers, and counselors. These stressors can compound and worsen a patient's situation [26]. Anne's story reveals the sociocultural beliefs that can lead to the discrimination of HIV/AIDS patients and the severity of depression and financial hardship that can result. In light of the relationship between HIV-related stigma and mental health and financial well-being, we conclude that it is critical for PLWA in Tanzania and around the world to have access to biomedical and psychological therapeutic treatments for mental health disorders. We recommend the provision of additional HIV educational materials, expanded home-based counselor training, and increased availability of mental health resources for PLWA in Tanzania and the developing world. Acknowledgements S.K.R., S.A., and K.R.R. met the study participant, created interview questions, carried out the interview, and drafted the early manuscript. M.L., P.A.P., M.E.B., A.O.F., and R.T.H.F. edited the early manuscript. S.K.R., W.B.M., and C.A.D. completed the final revisions. All contributing authors reviewed and approved this manuscript for publication. We are additionally grateful to Anne, our interviewee who made this field report possible; and John Shadrack Mandago and Daudi Amon Zimulinda, our liaisons and translators. This work was supported by the Infectious Disease Society of America Medical Scholars Program; University of California, Irvine School of Medicine Global Initiative; and Pendulum Global. Conflicts of interest There are no conflicts of interest.