Pre-exposure prophylaxis (PrEP) prevents HIV, but low rates of retention in care limit its effectiveness. We conducted a prospective survey-based study to investigate reasons for PrEP disengagement among men who have sex with men attending a sexual health clinic at a large urban academic medical center in New York City who were lost to follow up; surveys asked about current PrEP status, reasons for disengagement, attitudes toward PrEP, substance use, sexual practices, and behavioral/social determinants of health. Outreach attempts were made to 634 patients; majority of eligible participants were unable to be contacted (59%). Among those who agreed to participate (n = 175), 21% asked to re-establish care. Among those who completed the questionnaire (n = 86), 36% were taking PrEP. The most common reasons for PrEP discontinuation were cost/lack of insurance coverage (31%), decreased HIV risk perception (29%), and side effects (16%). Among those with decreased perception of risk, 62% were less sexually active, 38% were no longer engaging in anal sex, and 31% were using condoms for prevention. Participants reported that free medication (60%), having a sexual partner recommend PrEP (13%), and being able to receive PrEP from a primary care provider (13%) would encourage restarting PrEP. Findings were limited by low response rate (12% of eligible subjects completed the survey) and lack of Spanish-language questionnaires. Understanding reasons for loss-to-PrEP follow-up is essential for HIV prevention. Many people lost to follow up still desired PrEP, underscoring the importance of outreach, benefits navigators, and expansion of PrEP into primary care settings.
Keywords: MSM; engagement in care; pre-exposure prophylaxis; sexual health.