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May 11, 2021 Jeffrey Zirger Information Collection Review

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May 11, 2021 Jeffrey Zirger Information Collection Review May 11, 2021 Jeffrey Zirger Information Collection Review Office Centers for Disease Control and Prevention 1600 Clifton Road NE, MS-D74 Atlanta, Georgia 30329 Submitted via regulations.gov Re: Proposed Data Collection Submitted for Public Comment and Recommendations (Docket No. CDC-2021-0023) Dear Jeffrey Zirger, We write in response to the Centers for Disease Control and Prevention’s notice with comment on a proposed information collection for the Behavioral Risk Factor Surveillance System (86 FR 14115).1 Specifically, we aim to address the need for the Centers for Disease Control and Prevention (CDC) to add data collection on sexual orientation and gender identity (SOGI) to the standardized core questionnaire of the Behavioral Risk Factor Surveillance System (BRFSS) and to initiate the content testing process for intersex questions. This letter is submitted on behalf of 64 organizations committed to advancing equality and opportunity for lesbian, gay, bisexual, transgender, queer, and intersex (LGBTQI) people in the United States. Our interest and expertise in this area compel us to communicate the need for SOGI data measures to be incorporated into BRFSS’ standardized core questionnaire. Doing so will offer valuable insight into the demographics, health, and wellbeing of LGBTQI Americans and is critical to capturing a more comprehensive, accurate, and data-driven understanding of health disparities faced by LGBTQI communities and developing evidence-based policy interventions. This comment speaks to the current composition and purpose of BRFSS; the health disparities faced by LGBTQI people; and the need to include SOGI data collection in the BRFSS core module. Additionally, we also wish to express our support for the CDC to test and implement intersex status measures as recommended by the National Academies of Sciences, Engineering, and Medicine (NASEM).2 As the recent NASEM report observes: “Intersex status is almost never queried in 1 Centers for Disease Control and Prevention, “Proposed Data Collection Submitted for Public Comment and Recommendations” Federal Register 86 (47) (2021): 14115-14116, available at https://www.govinfo.gov/content/pkg/FR-2021-03-12/pdf/2021-05117.pdf. 2 National Academies of Sciences, Engineering, and Medicine, “Understanding the Wellbeing of LGBTQI+ Populations” (Washington: 2020), available at https://www.nap.edu/read/25877/chapter/1. population surveys, and the stigma associated with having intersex traits may inhibit people from self- identifying.”3 A culture of secrecy in the medical profession has historically prevented many people from developing a complete understanding of their intersex traits. Yet this is rapidly changing, and estimates based on existing data suggest the intersex population is comparable in size to the transgender population. Moreover, the NASEM report recognizes that an emerging body of evidence points to social, educational, and health disparities affecting intersex people, which appear to be “informed by the same stigmas experienced by lesbian, gay, bisexual, and transgender people.”4 “Fortunately,” the NASEM report notes, “researchers and advocates have identified questions that can be used to assess intersex status in population surveys.”5 The CDC should develop and test such measures, in consultation with the Office of Management and Budget and other agencies, and building on the experience of countries such as Australia and New Zealand that have adopted statistical standards for intersex data collection.6 I. Background on the Behavioral Risk Factor Surveillance System information collection BRFSS is an annual state-based health survey of more than 400,000 adults, designed to produce state- or sub-state jurisdiction-level data about health risk behaviors, chronic health conditions, use of preventive services, and emerging health issues.7 BRFSS represents the largest continuously conducted health survey system in the world, with its data being used to track national health objectives and to inform a wide range of funding decisions and resource allocation at the federal, state, and local levels.8 The CDC sponsors BRFSS information collection via cooperative agreement with states and territories with state coordinators determining questionnaire content and the CDC providing methodological and technical assistance.9 All participating states are required to administer a standardized core questionnaire – consisting of fixed core, rotating core, and emerging core questions 3 Id. at 27. 4 Id. at 28. 5 Id. at 27. 6 Stats NZ/Tatauranga Aotearoa, Statistical Standard for Gender, Sex, and Variations of Sex Characteristics (2021), https://www.abs.gov.au/statistics/standards/standard-sex-gender-variations-sex-characteristics-and-sexual-orientation- variables/latest-release; Australian Bureau of Statistics, Standard for Sex, Gender, Variations of Sex Characteristics and Sexual Orientation Variables (2020). https://www.abs.gov.au/statistics/standards/standard-sex-gender-variations-sex- characteristics-and-sexual-orientation-variables. See also interACT, Intersex Data Collection: Your Guide to Question Design (accessed April 29, 2021), https://interactadvocates.org/intersex-data-collection. 7 Centers for Disease Control and Prevention, “Behavioral Risk Factor Surveillance System About BRFSS,” available at https://www.cdc.gov/brfss/about/index.htm (last accessed April 2021). 8 Kellan Baker and Margaret Hughes, “Sexual Orientation and Gender Identity Data Collection in the Behavioral Risk Factor Surveillance System,” Center for American Progress, March 29, 2016, available at https://www.americanprogress.org/issues/lgbtq-rights/reports/2016/03/29/134182/sexual-orientation-and-gender- identity-data-collection-in-the-behavioral-risk-factor-surveillance-system/. 9 Centers for Disease Control and Prevention, “Proposed Data Collection Submitted for Public Comment and Recommendations” Federal Register 86 (47) (2021): 14115-14116, available at https://www.govinfo.gov/content/pkg/FR-2021-03-12/pdf/2021-05117.pdf. – and provide a set of shared health indicators for all BRFSS partners.10 The existing data collection framework allows each state to produce a customized BRFSS survey by adding selected, CDC- approved optional question modules to the core survey, including the optional SOGI module. While individual state- and territory-designed questions are for the jurisdiction’s own use, data gathered through the required core questions and optional federally approved modules are aggregated into a single national pooled data set.11 BRFSS’ optional SOGI module, which has been adopted by 40 states and territories,12 is an indispensable source of population-based data on the health and socioeconomic status of LGBTQ adults in the U.S. for a wide range of stakeholders.13 To expand and enhance this data source, we urge the CDC to add SOGI data measures to the standardize core questionnaire. II. Health disparities faced by LGBTQI communities LGBTQI individuals encounter disparities in physical and mental health status, health care access, and health outcomes that are driven by exposures to minority stress, discrimination, as well as adverse social, political, and economic determinants of health.14 These variables contribute to the unique challenges that LGBTQI communities face and drive large inequalities in health between LGBTQI and non-LGBTQI populations. Stigma against LGBTQI populations is responsible for high levels of minority stress, which can take a large toll on mental and physical health. A recent study from the Center for American Progress finds that 1 in 3 LGBTQI individuals have reported experiencing discrimination in the last year, including more than 3 in 5 transgender individuals.15 On a psychological level, stress from such experiences leads to the dysregulation of cortisol, which impacts a wide range of bodily functions – including metabolism, mood, cardiovascular health, and immune system health.16 These experiences are also 10 Ibid. 11 Kellan Baker and Margaret Hughes, “Sexual Orientation and Gender Identity Data Collection in the Behavioral Risk Factor Surveillance System,” Center for American Progress, March 29, 2016, available at https://www.americanprogress.org/issues/lgbtq-rights/reports/2016/03/29/134182/sexual-orientation-and-gender- identity-data-collection-in-the-behavioral-risk-factor-surveillance-system/. 12 National LGBT Cancer Network, “Advancing Sexual Orientation/Gender Identity (SOGI) Measures in the Behavioral Risk Factor Surveillance System (BRFSS)” (New York, NY: 2021), available at https://cancer- network.org/wp-content/uploads/2021/04/BRFSS-Justification-Sheet-April-2021-version-2-3.pdf 13 Williams Institute, “A Statement on the Need for SOGI Data Collection in the BRFSS,” (Los Angeles: University of California Los Angeles School of Law, 2021) available at https://williamsinstitute.law.ucla.edu/wp- content/uploads/Comment-SOGI-BRFSS-Apr-2021.pdf 14 National Academies of Sciences, Engineering, and Medicine, “Understanding the Wellbeing of LGBTQI+ Populations” (Washington: 2020), available at https://www.nap.edu/read/25877/chapter/1. 15 Lindsay Mahowald, Mat Brady and Caroline Medina, “Discrimination and Experiences Among LGBTQ People in the US: 2020 Survey Results” (Washington: Center for American Progress, 2021), available at https://www.americanprogress.org/issues/lgbtq-rights/news/2021/04/21/498521/discrimination-experiences-among- lgbtq-people-us-2020-survey-results/ 16 National Academies of Sciences, Engineering, and Medicine, “Understanding the
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