Since 2005, the New York City Department of Health and Mental Hygiene HIV Surveillance Program has ascertained transgender status among people living with HIV (PLWH) using data on sex assigned at birth and gender identity. Due to challenges in data availability, undercounting of transgender PLWH in NYC remains prevalent. In order to improve our ability to accurately enumerate transgender PLWH and address their needs for gender-affirming HIV care, we used claims data to identify transgender Medicaid enrollees and match these persons to the HIV registry.
Medicaid claims do not specify gender identity inclusive of transgender status. In consultation with clinical experts on HIV and gender-affirming care, we developed an algorithm to identify transgender enrollees using diagnoses, prescriptions and sex at birth from claims records in 2013-2017. In order to identify those living with HIV, we matched Medicaid enrollees to individuals diagnosed with HIV before 2018 in the registry.
Our algorithm identified 6,043 unique transgender persons who accessed Medicaid in 2013-2017, with 1,472 (24%) reported to the HIV registry, 1,168 (79%) of whom were identified as transgender in the registry. We found an additional 292 transgender individuals in the registry that had accessed Medicaid during this period but were not identified by our algorithm, for a total of 6,335 transgender individuals accessing Medicaid during this period (0.1% of the NYC Medicaid population) and 1,764 transgender PLWH (28% of transgender individuals accessing Medicaid). From 2013 to 2017, there was a 35% increase in transgender individuals accessing Medicaid.
Using a novel method we identified a large sample of transgender individuals in Medicaid, many of whom were PLWH. We were able to calculate the prevalence of HIV among transgender Medicaid beneficiaries and to improve ascertainment of transgender persons in the HIV registry. We also saw a sizeable increase in transgender individuals accessing Medicaid over the five-year period, likely due in part to expansion of Medicaid policy to cover transgender-related healthcare. Given the high coverage among transgender PLWH, Medicaid is a valuable source of health information for the transgender population, a group that is often difficult to identify due to issues of stigma, reduced access to appropriate care, and misgendering by healthcare personnel.