A qualitative study of urban people of color living with human immunodeficiency virus: challenges related to retention in care, antiretroviral therapy acceptance, and “conspiracy beliefs”

Background: Despite advances in HIV medication, many people living with HIV (PLWH) do not link to care upon diagnosis, do not remain engaged if linked, and do not achieve viral suppression through consistent ART adherence. Not achieving viral suppression is associated with low CD4-cell counts, preventable hospitalizations, frequent emergency room usage, risk of developing a drug resistance, and excess morbidity and mortality. Despite extensive literature that explores barriers to care, these disparities remain, particularly among racial, ethnic and sexual minority groups. Mistrust of health care systems and/or providers is thought to provide a partial explanation for why racial and ethnic minority groups are less likely to access outpatient HIV care. One form of health-related mistrust, referred to as “conspiracy beliefs” in the literature and in popular culture, is particularly associated with racial and ethnic minority people. HIV-related “conspiracy beliefs” can include the ideas that the government created HIV to target specific minority groups, that antiretroviral medication is used to experiment on vulnerable groups, or that a cure is being withheld or delayed by pharmaceutical companies and/or the government. Although many studies have assessed the prevalence of such beliefs, little is known about the possible relationship between endorsing these ideas and engagement from HIV care/ART adherence among PLWH. Moreover, the extant literature has provided equivocal findings that point to the need for further research on the relationship between these beliefs and managing one’s HIV. Methods: Over the course of one year, 27 semi-structured, in-depth interviews were conducted with low income PLWH of color living in the NYC area that are currently, or were recently, disengaged from outpatient HIV medical care. Additionally, a brief questionnaire was administered to obtain demographic and engagement/medication adherence data to describe the sample of participants. Findings: This analysis revealed the variation, texture and diversity related to people’s beliefs about the origin and treatment of HIV. Beliefs about the pharmaceutical industry and the government highlighted both the racism and classism experienced by low income who belong to racial and ethnic minority groups. Notably, HIV care providers did not appear to be perceived as part of the government-pharmaceutical power complex. This suggests that while many people may endorse these types of ideas, endorsement does not necessarily directly impact engagement in care. However, endorsing positive beliefs about the efficacy of ART, and the belief that HIV can be a chronic disease if treated consistently, helped participants remain adherent or desire to re-commit to taking it consistently. Participants also appreciated, and desired, providers that engaged in patient-centered medicine. Recommendations: It may be that public health does not necessarily need to endeavor to dislodge origin or pharmaceutical/cure-related beliefs; rather, interventions can focus on building trust between health care providers and populations that have been experienced both historically and ongoing marginalization. Participants’ emphasis on wanting to manage their ART-related challenges with their providers suggests that HIV providers have an instrumental role in not only lowering viral loads and achieving viral suppression, but also helping their patients feel agentic and able to manage their HIV. Implementing patient-centered medicine will also engender trust, thereby helping patients internalize the belief that consistent engagement and ART adherence makes HIV a chronic, manageable illness