Why do people living with HIV/AIDS delay, decline, or discontinue antiretroviral therapy?: A mixed-methods exploration

Background. An estimated 20-25% of persons living with HIV/AIDS (“PLHA”) delay, decline, or discontinue antiretroviral therapy (ART) when it is indicated (called “PLHA-DDD”), including disproportionately high numbers of African Americans and Latinos. Little is known about barriers PLHA-DDD experience to initiating ART and sustaining it with high adherence. The present study uses mixed methods to address this gap.

Methods. African American and Latino adult PLHA-DDD (N=95) were recruited through clinics and peer referral in 2012-2013. Participants engaged in a structured assessment with reliable/valid measures on health and ART history. A subset (N=34) was purposively sampled for maximum variation for qualitative interviews on barriers to ART initiation.

Results. Most participants (61.1%) were male; with low socio-economic status (97.0%); African American (76.8%; [23.2% Latino]); aged 48.0 years (SD=8.88 years) on average; and most had seen an HIV provider in the past 6 months (71.6%). Half (56.8%) had taken ART previously. Quantitative data indicated the main reasons for stopping ART were side effects (68.3%), life circumstances changed (54.9%), adherence (47.1%), and substance use (45.1%). Qualitative analyses revealed six factors inhibiting ART initiation/continuation: (1) distrust of the medical establishment; (2) misconceptions about ART; (3) fears of side effects; (4) fears of unintended disclosure; (5) selling ART to unscrupulous pharmacies; and (6) suboptimal relationships with the health care system.

Conclusions. A set of complex and intersecting factors, many of which are grounded in poverty and racial/ethnic minority status, inhibit ART initiation/continuation. Interventions to ameliorate these barriers are sorely needed to improve ART initiation for PLHA-DDD.