Collection of Sexual Orientation and Gender Identity (SOGI) Data: Considerations for Medicaid and Spotlight on Oregon
Thirteen million people identify as part of a sexual or gender minority (SGM) in the United States, and an estimated 1.17 million of those SGM adults (age 18-64 old) have Medicaid as their primary source of health insurance. Although there has been increasing recognition over the last decade that sexual orientation and gender identity (SOGI) are important determinants of health, the recent coronavirus (COVID-19) crisis has amplified the stark health disparities that many vulnerable populations face. Despite gaps and inconsistencies in state and federal reporting on COVID-19, data continues to show that Black, Indigenous, and other people of color (BIPOC) have been disproportionately impacted by both higher risks of infection and poorer health outcomes. However, health-related data about SGM populations is particularly scarce.
Although several states, such as California, Pennsylvania, Rhode Island, and the District of Columbia (D.C.) routinely collect SOGI data during COVID-19 testing, our review of states’ reporting of COVID-19 data by demographic categories did not reveal any state that is reporting case, death, hospitalization, testing, or vaccine administration data by sexual orientation or gender identity. Lack of health data for SGM populations is not unique to the COVID-19 crisis. There remains a lack of data on the characteristics and well-being of these groups in general. For example, our recent analysis found that all state Medicaid agencies collect self-reported demographic data including race, ethnicity, and language (REL) from applicants during the eligibility and enrollment process. However, SOGI data is much less common. This persistent health-data gap is a major barrier for understanding and improving the health of SGM populations.
The objective of this brief is to document how information describing SGM populations is currently collected at the federal level and in Medicaid. The brief also spotlights Oregon’s recent efforts to improve the collection of SOGI data, and present several issues that states should consider as they look to improve their collection of SOGI data in Medicaid. The information presented here draws from the State Health Access Data Assistance Center’s (SHADAC) review of 50 states’ paper Medicaid applications and 33 states’ online Medicaid applications and federal research findings. While this issue brief outlines current data collection efforts and some limited research on how to collect this information, it does not make judgments on the best way to collect this data. SHADAC believes that more comprehensive and current research and guidance on this topic is needed. For example, the current ways SOGI data is collected in federal surveys does not always align with recommended best practices from advocates. Additionally, some of the research on this topic at the federal level, started under the Obama administration, is already out of date due to the fast-changing nature of social customs and evolving language around this topic.
On January 26, 2023, the Centers for Medicare & Medicaid Services approved California’s request to amend the California Advancing and Innovating Medi-Cal Section 1115 demonstration. This expert perspective describes the amendment, a centerpiece of which is approval for California Medicaid to provide a targeted set of Medicaid services to youth and adults in state prisons, county jails, and youth correctional facilities for up to 90 days prior to release. By providing re-entry services to Medicaid-enrolled individuals who are incarcerated, California aims to build a bridge to community-based care for justice-involved enrollees, offering them services to stabilize their physical and behavioral health conditions and establishing, prior to release, a re-entry plan for their community-based care.
On January 23, 2023, the Federal Communications Commission issued an important ruling that provides states with new flexibility to support enrollee outreach and communication efforts as part of their processes to unwind the Medicaid continuous coverage requirement. The ruling permits state agencies and their partners to send text messages and make phone calls to individuals about enrollment-related issues not only for Medicaid but for other state-run health insurance programs, including marketplace coverage. This expert perspective reviews the ruling and implications for states.
