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 Wellbeing of LGBTQI+ Populations” (Washington: 2020), available at https://www.nap.edu/read/25877/chapter/1. associated with elevated levels of substance use in order to cope with discrimination and lack of access to adequate behavioral and mental health resources – data from BRFSS in 2019 reveal that 49 percent of LGBTQ adults smoke every day or some days, compared with 39 percent of non-LGBTQ adults,17 and that LGBTQ individuals also consume alcoholic beverages at higher rates than their non-LGBTQ counterparts.18 LGBTQ adults face significantly higher rates of mental health issues that can be directly related to discriminatory experiences.19
Structurally, LGBTQI individuals encounter barriers to economic security that create additional strain; while the Census Bureau reports that less than 12% of the general population lived in poverty in 2019, the current rate of LGBTQ people experiencing poverty is nearly 22%, and LGBTQ adults are 1.6 times more likely than their non-LGBTQ counterparts to not have enough money to afford food for themselves or their families.20 These obstacles not only exacerbate stress, leading to mental and physical ailments, but make it more difficult for LGBTQI individuals to afford quality care. Nearly 1 in 3 LGBTQI adults have reportedly postponed or neglected to receive needed medical care due to prohibitive cost.21 For context, recent data from the Kaiser Family Foundation shows that among the general population, around 1 in 10 people report postponing or not receiving needed medical care due to cost.22 LGBTQ adults are also less likely to have a regular health care provider and less likely to receive timely health care, including delays on doctors’ visits and prescription fills.23
LGBTQI individuals face additional barriers because of a lack of cultural competency in how to provide treatment for sexual and gender minorities. For example, 12% of LGBT adults living with
17 Caroline Medina and Lindsay Mahowald, “Government Strategies To Address the Coronavirus Must Include Targeted Assistance for LGBTQ Communities” (Washington: Center for American Progress, 2021), available at https://www.americanprogress.org/issues/lgbtq-rights/news/2021/02/01/495205/government-strategies-address- coronavirus-must-include-targeted-assistance-lgbtq-communities/. 18 Jennifer Kates and others, “Health and Access to Care and Coverage for Lesbian, Gay, Bisexual, and Transgender (LGBT) Individuals in the U.S.” (San Francisco: Kaiser Family Foundation, 2018), available at https://www.kff.org/report-section/health-and-access-to-care-and-coverage-lgbt-individuals-in-the-us-health- challenges/. 19 David J. Lick, Laura E. Durso, Kerri L. Johnson, “Minority Stress and Physical Health Among Sexual Minorities,” Perspectives on Psychological Science 8(5) (2013): 521-548, available at https://doi.org/10.1177/1745691613497965. 20 The National LGBTQ Anti-Poverty Action Network, “Poverty at the End of the Rainbow” (Boston: December 18, 2020), available at https://nclr.turtl.co/story/poverty-at-the-end-of-the-rainbow/page/2/1. 21 Caroline Medina and Lindsay Mahowald, “Repealing the Affordable Care Act Would Have Devastating Impacts on LGBTQ People,” Center for American Progress, October 15, 2020, available at https://www.americanprogress.org/issues/lgbtq-rights/news/2020/10/15/491582/repealing-affordable-care-act- devastating-impacts-lgbtq-people/. 22 Krutika Amin, Gary Claxton, Giorlando Ramirez, and Cynthia Cox, “How does cost affect access to care?” (Washington: Peterson-KFF Health System Tracker, January 5 2021), available at https://www.healthsystemtracker.org/chart-collection/cost-affect-access-care/#item-start. 23 Jennifer Kates and others, “Health and Access to Care and Coverage for Lesbian, Gay, Bisexual, and Transgender (LGBT) Individuals in the U.S.” (San Francisco: Kaiser Family Foundation, 2018), available at https://www.kff.org/report-section/health-and-access-to-care-and-coverage-lgbt-individuals-in-the-us-health- challenges/. HIV reported that a health care professional blamed them or their sexual orientation for their disease.24 Alarmingly, more than half of medical school curricula lack information about the unique health issues and treatment of LGBTQI people beyond work related to HIV.25 LGBTQI adults also face harassment and abuse from health care providers – 15% have reported postponing or not receiving needed care for fear of discrimination.26 1 in 5 have reported at least one negative experience of discrimination from a health care provider, including care refusals, abusive language, or unwanted physical contact.27
Each of the above factors propel health disparities between LGBTQI adults and non-LGBTQI adults. Mentally, individual stigma and systemic discrimination leads to high levels of depression, anxiety,28 and suicidal ideation29 among LGBTQI populations. Physically, constant stress and lack of access to care have contributed to elevated rates of chronic diseases and early-onset disabilities.30 LGBTQI adults are more likely to suffer from gastro-intestinal issues, cardiovascular disease, osteoarthritis,31 cancer, HIV and other STIs.32 Analysis of 2019 BRFSS data finds that 20 percent of LGBTQ adults have been informed they have asthma compared with 14 percent of non-LGBTQ adults.33 To better understand and address the disparities that LGBTQI people encounter in health status, health care access, and health outcomes, it is critical to add SOGI measures to the BRFSS standardized core questionnaire.
24 Lambda Legal, “When Health Care Isn’t Caring: Lambda Legal’s Survey on Discrimination Against LGBT People and People Living with HIV“ (New York: 2010), available at https://www.lambdalegal.org/sites/default/files/publications/downloads/whcic-report_when-health-care-isnt- caring.pdf. 25 Jennifer Kates and others, “Health and Access to Care and Coverage for Lesbian, Gay, Bisexual, and Transgender (LGBT) Individuals in the U.S.” (San Francisco: Kaiser Family Foundation, 2018), available at https://www.kff.org/report-section/health-and-access-to-care-and-coverage-lgbt-individuals-in-the-us-health- challenges/. 26 Caroline Medina and Lindsay Mahowald, “Repealing the Affordable Care Act Would Have Devastating Impacts on LGBTQ People,” Center for American Progress, October 15, 2020, available at https://www.americanprogress.org/issues/lgbtq-rights/news/2020/10/15/491582/repealing-affordable-care-act- devastating-impacts-lgbtq-people/. 27 Ibid. 28 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. 29 Meyer IH, Russell ST, Hammack PL, Frost DM, Wilson BDM, “Minority stress, distress, and suicide attempts in three cohorts of sexual minority adults: A U.S. probability sample,” PLoS ONE 16(3) (2021), available at https://doi.org/10.1371/journal.pone.0246827. 30 Jennifer Kates and others, “Health and Access to Care and Coverage for Lesbian, Gay, Bisexual, and Transgender (LGBT) Individuals in the U.S.” (San Francisco: Kaiser Family Foundation, 2018), available at https://www.kff.org/report-section/health-and-access-to-care-and-coverage-lgbt-individuals-in-the-us-health- challenges/. 31 Ibid. 32 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. 33 Caroline Medina and Lindsay Mahowald, “Government Strategies To Address the Coronavirus Must Include Targeted Assistance for LGBTQ Communities” (Washington: Center for American Progress, 2021), available at https://www.americanprogress.org/issues/lgbtq-rights/news/2021/02/01/495205/government-strategies-address- coronavirus-must-include-targeted-assistance-lgbtq-communities/.
III. The need to add SOGI questions to BRFSS standardized core questionnaire and to test intersex status questions
Currently the Department of Health and Human Services has incorporated measures related to SOGI identity or behavior into many of the large surveillance instruments, including the National Health Interview Survey, National Health and Nutrition Examination Survey, National Survey of Drug Use and Health, Population Assessment of Tobacco and Health study, and more. The sample size of BRFSS dwarfs the sample sizes of all of these other surveillance instruments. Using the large BRFSS sample and combining data over years has led to world-class aggregate datasets for examining underserved populations – particularly LGBTQI people – allowing for intersectional analysis that takes into account race, ethnicity, and sex. For example, through BRFSS data researchers can explore differences between African American gay male versus bisexual male tobacco use, something no other surveillance system offers.
In fact, these datasets have led to over 125 peer reviewed publications, including over two dozen specific to transgender people.34 These articles provide unprecedented access to insights about LGBTQ health issues such as cancer screenings, rural access to care, and veteran’s health; explore issues related to health insurance coverage, health policy, mental health, violence, socioeconomic and behavioral determinants of health such as smoking, drinking, diet, activity, and preventive screenings;35 and enabled calculations that doubled the estimate of the transgender population in the U.S.36
Notably, these data are not representative of the full country, they solely represent the currently 40 states and territories that choose to add the SOGI module. However, because states choosing to collect SOGI data are more likely to be progressive, this world-class aggregate dataset likely underestimates the health challenges faced by LGBTQI adults in more conservative states, introducing a systemic bias into all of the articles published thus far. Adding SOGI to the BRFSS standardized core questionnaire would eliminate that bias and provide robust unparalleled data on LGBTQI people and other rare and underserved populations.
Simultaneous with adding SOGI to the BRFSS core, testing and modifications should be initiated to address deficiencies related to BRFSS’ current sex measure, which is inadequate. For example, if someone is nonbinary and does not identify as either male or female the survey is stopped; later survey language conflates sex assigned at birth with current gender (i.e., refers to women’s care); and there
34 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. 35 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. 36 Jan Hoffman, “Estimate of U.S. Transgender Population Doubles to 1.4 Million Adults,” New York Times, June 30, 2016, available at https://www.nytimes.com/2016/07/01/health/transgender-population.html. are no intersex measures at all. It would only require minor testing and modifications to address all these issues, and the resultant measures would be much better positioned to adequately capture underserved populations such as transgender and intersex persons, as well as rapidly growing populations, such as nonbinary persons.
Evidence reveals that collecting SOGI measures does not impact response rates and accuracy of the data.37 Collecting SOGI data is now a norm for most U.S. states and those that do so are successfully able to understand health disparities faced by LGBTQI populations and to use BRFSS data to inform their strategic efforts to reduce those disparities through targeted health programs and interventions.38 Until all states adopt the BRFSS SOGI module, it will remain challenging to make national-level inferences and lead to an incomplete assessment of the country’s LGBTQ health. If implemented by all states, the SOGI module would provide critical and more accurate information on LGBTQ peoples’ health needs; inform programs and tailored interventions to reduce LGBTQ health disparities and promote health equity; and support planning, developing, monitoring, evaluating, and reporting of current and new preventative and treatment programs.39 To ensure health disparities of all LGBTQI Americans are addressed, it is imperative for the CDC to add SOGI measures to the BRFSS standardized core questionnaire and to test and implement intersex status measures.
IV. Conclusion
For the reasons stated above, the undersigned organizations respectfully urge the CDC to add SOGI measures to the standardized core questionnaire of BRFSS and to test intersex status questions. Doing so is crucial for advocates, researchers, policymakers, and service providers who require comprehensive and accurate information on LGBTQI communities to generate data-driven policies to address existing health disparities.
Please do not hesitate to contact Caroline Medina, [email protected], if you need any additional information. Thank you for your time, and we look forward to continuing this discussion with you.
Signed in partnership,
Center for American Progress
37 Ibid. 38 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/. 39 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. Advocates for Youth AIDS Alabama AIDS United American Atheists BiNet USA Bradbury-Sullivan LGBT Community Center California LGBTQ Health and Human Services Network Callen-Lorde Community Health Center Center for LGBTQ Economic Advancement & Research (CLEAR) CenterLink: The Community of LGBT Centers Compass LGBTQ Community Center ENC - Equality NC Equality California Equality Federation Equality Maine Equality New Mexico Foundation Equality Utah Every Texan Fair Wisconsin Fenway Institute Four Corners Rainbow Youth Center FreeState Justice, Maryland's LGBTQ Advocates Gay City: Seattle's LGBTQ Center Georgia Equality GLMA: Health Professionals Advancing LGBTQ Equality GLSEN Guttmacher Institute Howard Brown Health Hudson Pride Center Human Rights Campaign InterACT: Advocates for Intersex Youth LGBT Life Center LGBTQ Center of Bay County Massachusetts Transgender Political Coalition Mazzoni Center Movement Advancement Project NASTAD National Center for Lesbian Rights National Center for Transgender Equality National Equality Action Team (NEAT) National Health Law Program National LGBT Cancer Network National LGBTQ Task Force Oasis Legal Services One Colorado one-n-ten Out Boulder County OutNebraska PFLAG National SAGE Silver State Equality-Nevada Southwest Center Tennessee Equality Project Texas Data Quality Coalition the Montrose Center The NetWerk / Adair Co Glbt Resource Center The Source LGBT+ Center The Transformation Project, Inc. The Trevor Project Transgender Law Center Transhealth Northampton Waves Ahead Corp & SAGE Puerto Rico Whitman-Walker Institute