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.
When the Families First Coronavirus Response Act Medicaid “continuous coverage” requirement is discontinued states will restart eligibility redeterminations, and millions of Medicaid enrollees will be at risk of losing their coverage. A lack of publicly available data on Medicaid enrollment, renewal, and disenrollment makes it difficult to understand exactly who is losing Medicaid coverage and for what reasons. Publishing timely data in an easy-to-digest, visually appealing way would help improve the transparency, accountability, and equity of the Medicaid program. This expert perspective lays out a set of priority measures that states can incorporate over time into a data dashboard to track Medicaid enrollment following the end of the continuous coverage requirement. For a detailed discussion of the current status of Medicaid enrollment and retention data collection and best practices when developing a data dashboard to display this type of information, SHVS has published a companion issue brief.
On January 15, 2022, health insurers will be subject to new federal requirements to cover and waive cost-sharing for over-the-counter diagnostic tests for COVID-19 for the duration of the federal public health emergency. Past federal guidance required insurers to fully cover COVID-19 tests, but allowed them to require enrollees to first obtain a health professional’s determination that a test is medically necessary. The new requirements, published January 10, enable consumers to obtain the tests directly from pharmacies or online retailers without being seen by a health professional. With case rates surging and the costs of over-the-counter COVID-19 tests ranging from $14 to $34, this new benefit should provide significant financial relief to privately insured individuals. This expert perspective focuses on key provisions of the new coverage requirements as well as health equity considerations and implications for state insurance regulators.
