Behind the numbers: Exploring the strengths and weaknesses of testing, engagement and retention in HIV care in North Carolina

Background: In pursuit of the NHAS goals to link clients into care and overcome health disparities, North Carolina is working to achieve viral suppression in HIV+ clients. Treatment cascades are important visual, quantitative tools for assessment and planning but offer no contextual insight into why treatment gaps exist. This study explores the perspectives of professionals working in the HIV prevention and care system in North Carolina (NC) to elucidate areas for improvement in identifying new HIV cases and linking and retaining patients in quality HIV primary care. Methods: Twenty-two stakeholders were interviewed, representing the NC HIV prevention and care system. A structured interview guide was utilized that explored participants' perceptions of the strengths and weaknesses of testing, linkage and retention in care throughout the state. Interviews were transcribed verbatim and coded for emergent themes. Results: Regional differences in the prevention and treatment system with large variations in access to testing and treatment were dominant themes. Respondents noted NC's support for nontraditional venue testing as a systems-level strength, and continued high HIV-related stigma as a barrier to testing. Moreover, numerous barriers to the initial linkage-to-care were identified, including transportation, patients' financial and psychosocial issues, and long wait times for appointments in some regions. NC's recent initiatives to increase active referrals to care and outreach for reengagement are anticipated to have significant benefits. Conclusions: This study provides insight into professionals' perceptions of successful policies and programs and areas for improvement for North Carolina's HIV treatment and prevention system.