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BACKGROUND: Transgender persons – particularly transgender women, born male and identifying as women – have high HIV infection rates in the US and NYC. Little is known about transgender persons’ post-diagnosis care utilization and clinical outcomes, both of which can be tracked by HIV surveillance. However, surveillance systems typically group most transgender persons with men who have sex with men (MSM).
METHODS: NYC’s HIV surveillance registry includes all diagnoses of HIV since 2000 and all HIV-related laboratory test results since 2005. Collection of transgender data began in 2005. In 2010, an existing database was designated as the repository. Providers at transgender-friendly facilities were asked what surveillance data would be useful in reports and to provide a list of HIV-positive transgender clients. Lists were matched to the registry to assess its completeness of ascertainment of transgender and update transgender status. We enumerate transgender persons diagnosed with HIV in 2006–2011, compare transgender women with non-transgender MSM, and report multivariable analyses of concurrent HIV/AIDS diagnosis, delayed initiation of care, and non-achievement of virologic suppression one year post-diagnosis, using registry data reported by 6/30/2013.
RESULTS: Providers requested surveillance data on transgender women and men. They asked that transgender women not be classified as MSM to respect self-identification. Of 110 transgender HIV+ persons from six facilities and reported since 2005, 57 (52%) were already documented in the registry as transgender. In 2006–2011, 264/23,805 persons diagnosed with HIV were transgender (1%): 98% transgender women and 2% transgender men. Sex with a male partner was reported by 96% of transgender women and all transgender men. Compared with non-transgender MSM, transgender women were younger, more likely to be black or Hispanic, and more likely to have delayed initiation of care (47% vs. 38%;p=0.0036); proportion of HIV diagnoses made concurrently with AIDS (13% vs. 15%;p=0.3347) and median CD4 count at initiation of care (411 vs. 401 cells/µL;p=0.0882) were similar. Transgender women had 15% increased odds of delaying initiation of care (AOR=1.15;95% CI:0.88–1.51), and odds of not achieving suppression that were 56% increased overall (AOR=1.56;95% CI:1.13–2.16) and 44% increased among the subset with timely initiation of care (AOR=1.44;95% CI:0.99–2.11).
CONCLUSIONS: NYC has successfully implemented transgender HIV surveillance but may be correctly identifying only half of existing transgender cases. Other jurisdictions may benefit from performing similar assessments of their populations, facilities, and ascertainment strategies. Improved linkage to care and treatment adherence and social support leading to viral suppression could reduce outcome disparities.