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Sexual Orientation and Gender Identity Data: New and Updated Information on Federal Guidance and Medicaid Data Collection Practices (SHVS Brief)

Elizabeth Lukanen, Deputy Director
Emily Zylla, Senior Research Fellow
March 11, 2024
Authors: Emily Zylla and Elizabeth Lukanen, SHADAC. 
Original publication date: March 11, 2024
 
Updated sexual orientation and gender identity sogi data collection brief SHVS

In the United States, over 13 million people identify as lesbian, gay, bisexual, or transgender (LGBT).1 Further, approximately 1.2 million LGBT adults (ages 18 - 64) are covered by Medicaid, and, of those, it is estimated that 152,000 (12.7%) identify as transgender.2  

This population has historically faced inequitable treatment, discrimination, and, often, barriers to health coverage and access.3 While progress towards equality has been made in the modern era, systemic issues persist – President Biden as recently as June 2022 signed Executive Order 14075: Advancing Equality for Lesbian, Gay, Bisexual, Transgender, Queer, and Intersex Individuals (LGBTQI+).4 
 
Amongst other directives, the order states that the Federal Government, “must also address the discrimination and barriers that LGBTQI+ individuals and families face by expanding access to comprehensive health care, including reproductive health.” One such barrier involves the lack of health-related data related to LGBTQI+ populations, despite evidence showing that sexual orientation and gender identity (SOGI) are impactful social determinants of health.4
 
In the fall of 2023, Centers for Medicare & Medicaid Services (CMS) announced that starting November 1, 2023, those applying for coverage through HealthCare.gov will be asked new optional SOGI questions.5 Soon after, CMS also released guidance for states who want to add the same SOGI questions to their own Medicaid and CHIP applications.6 
 
This State Health & Value Strategies brief on SOGI data collection, originally published in 2021, has now been updated by SHADAC authors Emily Zylla and Elizabeth Lukanen to reflect the new federal guidance and emerging recommended best practices.
 
This updated brief also includes:
  • a summary of the current landscape of SOGI data collection in Medicaid through an examination of all 50 states’ and Washington, D.C.’s paper Medicaid applications along with 44 states’ online Medicaid applications
  • a spotlight on Oregon’s efforts to develop SOGI data standards
  • a discussion of considerations for states wanting to implement these new SOGI questions into their Medicaid application(s)

Read the brief in full here. 

About the SHVS:

State Health and Value Strategies (SHVS) assists states in their efforts to transform health and healthcare by providing targeted technical assistance to state officials and agencies. The program is a grantee of the Robert Wood Johnson Foundation, led by staff at Princeton University’s School of Public and International Affairs. The program connects states with experts and peers to undertake healthcare transformation initiatives. By engaging state officials, the program provides lessons learned, highlights successful strategies and brings together states with experts in the field. Learn more at www.shvs.org.
 
About the Authors:
 
This issue brief was prepared by Emily Zylla and Elizabeth Lukanen. The State Health Access Data Assistance Center (SHADAC) is an independent, multi-disciplinary health policy research center housed in the School of Public Health at the University of Minnesota with a focus on state policy. SHADAC produces rigorous, policy-driven analyses and translates its complex research findings into actionable information for states. Learn more at www.shadac.org.  
References:

[1] The Williams Institute at UCLA School of Law. (2019, December 16). LGBT FAQs - Williams Institute. Williams Institute. https://williamsinstitute.law.ucla.edu/quick-facts/lgbt-faqs/

[2] Medicaid and CHIP Payment Access Commission (MACPAC). (June 2022). Access in Brief: Experiences of Lesbian, Gay, Bisexual, and Transgender Medicaid Beneficiaries with Accessing Medical and Behavioral Health Care. https://www.macpac.gov/wp-content/uploads/2022/06/Access-in-Brief-Experiences-in-Lesbian-Gay-Bisexual-and-Transgender-Medicaid-Beneficiaries-with-Accessing-Medical-and-Behavioral-Health-Care.pdf

[3] Bosworth, A., Turrini, G., Pyda, S., Strickland, K., Chappel, A., De Lew, N., Sommers, B.D.. (June 2021). Health Insurance Coverage and Access to Care for LGBTQ+ Individuals: Current Trends and Key Challenges. https://aspe.hhs.gov/sites/default/files/2021-07/lgbt-health-ib.pdf

[4] U.S. Government. Executive Office of the President. “Advancing Equality for Lesbian, Gay, Bisexual, Transgender, Queer, and Intersex Individuals”. 87 Fed Reg 37,189-37,195. (June 22, 2022). https://www.govinfo.gov/app/details/FR-2022-06-21/2022-13391

[5] Centers for Medicare & Medicaid Services (2023). New Sexual Orientation and Gender Identity (SOGI) Questions on the Marketplace Application. https://www.cms.gov/files/document/sogi-questions-marketplace-application.pdf

[6] Center for Medicaid and CHIP Services (November 9, 2023). Guidance on Adding Sexual Orientation and Gender Identity Questions to State Medicaid and CHIP Applications for Health Coverage. https://www.medicaid.gov/sites/default/files/2023-11/cib11092023.pdf