Long-term HIV/AIDS survivors: Patients living with HIV infection retained in care for over 20 years. What have we learned?

Individuals diagnosed with HIV before 1996 had poor prognoses. Few HIV care centers can track patients continuously from the 1980s to present. We determined the sociodemographic, clinical, and health care utilization characteristics of patients diagnosed and followed for >20 years (i.e. long-term HIV/AIDS survivors) to understand what factors contributed to survival. All HIV-positive patients diagnosed before 1996 were categorized as active, moved/lost, or died as of 1 January 2016. Baseline sociodemographic, clinical characteristics, antiretroviral therapy (ART) usage, retention, HIV care costs, and health status were analyzed. Of 876 patients, 49.5% died, 30.3% moved or left, 20.3% remained active in care for a median of 23.4 years. At diagnosis, continuously-followed patients were younger with a higher CD4 cell count, attended regular clinic visits at higher frequencies, and had received more ART than patients who moved or died. As of 1 January 2016, their median age was 57 years (interquartile range 53-62), 15% were aged >65 years, median CD4 cell count was 591 cells/mm (475-863) with 68% >500 cells/mm. Sixty-two percent remained employed. The total cost of HIV care was $32,251,030 (Cdn$); median cost per patient per year $15,418 ($13,697-$18,392). Individuals diagnosed prior to 1996 benefited from early diagnosis and engagement to care, regular follow-ups, and timely initiation of ART, strongly supporting the modern guidelines of care.