Supplement

Overview and Methodology of the National HIV Behavioral

Surveillance Among Transgender Women — Seven Urban Areas,
United States, 2019–2020
Dafna Kanny, PhD1; Kathryn Lee, MPH1; Evelyn Olansky, MPH1,2,3; Taylor Robbins, MPH1; Lindsay Trujillo, MPH1,2,3,4;
Teresa Finlayson, PhD1; Elana Morris, MPH1; Christine Agnew-Brune, PhD1; Susan Cha, PhD1; Johanna Chapin-Bardales, PhD1;
Cyprian Wejnert, PhD1; National HIV Behavioral Surveillance Among Transgender Women Study Group

1Behavioral and Clinical Surveillance Branch, Division of HIV Prevention, National Center for HIV, Viral Hepatitis, STD, and TB Prevention, CDC, Atlanta,
Georgia; 2ICF, Fairfax, Virginia; 3Social & Scientific Systems, Inc., Atlanta, Georgia; 4Oak Ridge Institute for Science and Education, Oak Ridge, Tennessee

Abstract
Transgender women, especially transgender women of color, are disproportionately affected by HIV. However, no surveillance
system collects data on HIV risk factors among this population. To address this gap, CDC developed a surveillance system entitled
National HIV Behavioral Surveillance Among Transgender Women (NHBS-Trans) to assess behavioral and contextual data
through systematic biobehavioral surveillance to monitor behavioral risk factors, prevention usage, and HIV prevalence among
transgender women. NHBS-Trans used respondent-driven sampling in seven urban areas in the United States. Trained interviewers
used a standardized, anonymous questionnaire to collect information on HIV-related behavioral risk factors, HIV testing, and
use of prevention services. Each of the seven participating project areas recruited approximately 200 eligible transgender women
and offered anonymous HIV testing. Overall, in the seven project areas, 1,757 participants completed the eligibility screener for
NHBS-Trans during 2019–2020; of these, 6.6% were seeds (i.e., a limited number of initial participants who were chosen by
referrals from persons and community-based organizations who knew or were part of the local population of transgender women).
A total of 1,637 (93.2%) participants were eligible, consented, and completed the interview. Of these, 1,624 (99.2%) agreed to
HIV testing. Of the total 1,637 participants, 29 participants did not report identity of woman or transgender woman, resulting in
a final sample of 1,608 transgender women. NHBS-Trans project area staff members (n = 14) reported that the survey was timely
and addressed a critical need for HIV surveillance in a population that is often overlooked. The MMWR supplement includes
this overview report on NHBS-Trans, which describes the methods (history, participant eligibility criteria, questionnaire, data
collection, and HIV testing) as well as evaluation of project implementation and the performance of the questionnaire content,
specifically the acceptability for transgender women. The other NHBS-Trans reports in the supplement include information on
pre-exposure prophylaxis use, psychosocial syndemic conditions and condomless anal intercourse, nonprescription hormone
use, homelessness, discrimination and the association between employment discrimination and health care access and use, and
social support and the association between certain types of violence and harassment (gender-based verbal and physical abuse or
harassment, physical intimate partner abuse or harassment, and sexual violence) and suicidal ideation. NHBS-Trans provides
important data related to the goals of the Ending the HIV Epidemic in the U.S. initiative. Findings from NHBS-Trans can help
guide community leaders, clinicians, and public health officials in improving access to and use of HIV prevention and treatment
services by transgender women.

Introduction related to medication) that focuses on three core populations

disproportionately affected by HIV: men who have sex with
CDC’s National HIV Behavioral Surveillance (NHBS) is men, persons who inject drugs, and heterosexually active men
a comprehensive system for biobehavioral surveillance (i.e., and women at increased risk for HIV infection (1). Because
a surveillance activity that collects behavioral information HIV is disproportionally distributed among persons with
through surveys and also collects biologic specimens for low income, NHBS uses low income as a proxy for increased
laboratory testing on disease status or biologic outcomes risk for acquiring HIV infection through heterosexual sex
(1). However, CDC does not have a surveillance system that
specifically focuses on HIV risk factors among transgender
Corresponding author: Dafna Kanny, Behavioral and Clinical Surveillance
Branch, Division of HIV Prevention, National Center for HIV, Viral women, a group that is disproportionately affected by HIV,
Hepatitis, STD, and TB Prevention, CDC. Telephone: 770-488-5411; especially transgender women of color (2). Evidence suggests
Email: [email protected]. that in relation to their population size, transgender women are

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among the groups most affected by HIV in the United States Methods
(2,3). In 2017, CDC established the National HIV Behavioral
Surveillance Among Transgender Women (NHBS-Trans) Overview
system. The goal was to conduct HIV-related biobehavioral NHBS-Trans is an HIV-related biobehavioral surveillance
surveillance to monitor behavioral risk factors, HIV testing system to monitor behavioral risk factors, prevention use,
behaviors, receipt of prevention services, use of prevention and HIV prevalence among transgender women. During
strategies, and HIV prevalence. The focus population was 2019–2020, CDC conducted NHBS-Trans using respondent-
transgender women, defined as persons assigned male sex driven sampling, a methodology similar to snowball sampling
at birth but who identify as women or transgender women. that is often used to sample hard-to-reach populations (4). This
Funding was awarded through the U.S. Department of Health method relies on multiple waves of peer-to-peer recruitment to
and Human Services Secretary’s Minority HIV/AIDS Fund, achieve the desired sample size. Applicable local institutional
formerly the Secretary’s Minority AIDS Initiative Fund, to focus review boards in each participating project area approved
on the recruitment of Black or African American and Hispanic NHBS-Trans activities. NHBS-Trans activities were described
or Latina transgender women (https://www.hiv.gov/federal- in the model surveillance protocol (https://www.cdc.gov/hiv/
response/smaif/smaif-in-action). Two additional goals were to pdf/statistics/systems/nhbs/NHBS-Trans_Protocol.pdf ). The
develop best practices for conducting biobehavioral surveillance final NHBS-Trans sample included 1,608 transgender women
with this population and to provide a platform for the funded in seven urban areas in the United States (Atlanta, Georgia; Los
health departments to work on community engagement. Angeles, California; New Orleans, Louisiana; New York, New
CDC funded seven state and local health departments York; Philadelphia, Pennsylvania; San Francisco, California;
(hereafter referred to as project areas) to conduct NHBS-Trans and Seattle, Washington) recruited using respondent-driven
in geographically diverse urban areas in the United States: sampling. This activity was reviewed by CDC, deemed not
Atlanta, Georgia (Georgia Department of Public Health), Los research, and was conducted consistent with applicable Federal
Angeles, California (Los Angeles County Department of Public law and CDC policy.*
Health); New Orleans, Louisiana (Louisiana Department
of Health and Hospitals); New York City, New York (New
York City Department of Health and Mental Hygiene); Formative Assessment
Philadelphia, Pennsylvania (Philadelphia Department of Public NHBS-Trans implementation started with 18 months
Health); San Francisco, California (San Francisco Department (January 2018–June 2019) of formative assessment (https://
of Public Health); and Seattle, Washington (Washington State www.cdc.gov/hiv/pdf/statistics/systems/nhbs/NHBS-
Department of Health). Trans_Formative_Assessment_Manual.pdf ). Formative
This overview report describes NHBS-Trans 2019–2020 assessment methods included a review of existing data, reports,
data and the system methods (history, participant eligibility and publications; qualitative interviews with key partner
criteria, questionnaire, data collection, and HIV testing) as well organizations, including service providers and community
as evaluation of project implementation and the performance key informants; and focus groups (5). Project areas often
of the questionnaire content, specifically the acceptability for used formative assessments to answer key implementation
transgender women. The MMWR supplement also includes questions (e.g., the appropriate incentive for participation
reports on pre-exposure prophylaxis use, psychosocial syndemic and safe, conveniently located field site locations for data
conditions and condomless anal intercourse, nonprescription collection). Project areas also used the formative assessment
hormone use, homelessness, discrimination and the association period to build community support for NHBS-Trans. Project
between employment discrimination and health care access and areas assembled local community advisory boards (CABs), and
use, and social support and the association between certain project area staff members included transgender and gender
types of violence and harassment (gender-based verbal and nonconforming persons.
physical abuse or harassment, physical intimate partner abuse
or harassment, and sexual violence) and suicidal ideation. Eligibility Criteria
Findings from NHBS-Trans can help guide community
leaders, clinicians, and public health officials to improve NHBS-Trans included the following general eligibility
access to and use of HIV prevention and treatment services criteria: aged ≥18 years, residence in a participating urban area,
by transgender women. * 45 C.F.R. part 46.102(l)(2), 21 C.F.R. part 56; 42 U.S.C. Sect. 241(d); 5
U.S.C. Sect. 552a; 44 U.S.C. Sect. 3501 et seq.

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no previous participation in NHBS-Trans during the current to assist in review of the survey items. This database allowed
data collection, ability to complete the interview in English or organizing and searching 4,256 survey items by domain,
Spanish, and ability to provide informed consent. Additional construct, and source.
eligibility criteria included reporting specific combinations of CDC assembled a CAB to provide consultation on
responses to sex listed at birth and gender identity questions questionnaire development. The CAB included nine members:
(i.e., listed male at birth and gender identity including woman, eight were transgender women and one was a cisgender woman
transgender woman, or a gender not listed here or listed intersex with extensive research and clinical experience working with
at birth and a gender identity of transgender woman) (Box). transgender women. The majority (n = 5) of CAB members
were either Asian, Black or African American, or Hispanic or
Questionnaire Latina (Hispanic), although more members were White than
any other race and ethnicity. (Persons of Hispanic origin might
The NHBS-Trans questionnaire was developed with the be of any race but are categorized as Hispanic; all racial groups
following guiding principles: focus on domains relevant to the are non-Hispanic.) CAB members were recruited from each
lives of transgender women, preserve key NHBS indicators for of the four major regions of the continental United States
comparability with other populations, and ensure questionnaire (Midwest, Northeast, South, and West) to ensure geographic
items are respectful and appropriate for transgender women. representation.
During August 2015–January 2016, CDC conducted a Many questionnaire items were selected or adapted from the
literature review to identify survey tools that have been used in standardized set of questions used to collect information among
studies that included transgender persons. As a starting point the core NHBS populations. In addition, new questionnaire
for the literature review, a draft of a systematic review table sections (e.g., gender identity and medical gender affirmation)
and the search strategies used to identify the articles included were added to tailor the questionnaire for use among
in the evidence table were provided (6). CDC replicated transgender women. The order of questions was designed
these search strategies to identify any new articles that had to minimize the cumulative emotional toll of potentially
been published since the original search was performed (i.e., distressing questions about stigmatized behavior, experiences
January 1, 2008–November 30, 2015) or articles describing of discrimination, assault, and suicidality. Certain measures of
a study of transgender persons that might contain a survey sociodemographic characteristics and social determinants of
instrument but might not have met the inclusion criteria used health among transgender women are common to all topics of
in that systematic review. CDC identified 170 relevant articles reports included in the MMWR supplement (Table 1).
including all 116 of the articles listed in the evidence table and
54 articles that were not included in the evidence table. Full-
length copies of the articles identified by CDC searches were Data Collection
obtained and examined to identify all survey instruments that During June 2019–February 2020, project areas collected
were used in the study described in the systematic review. CDC biobehavioral and contextual data implementing recruitment
obtained contact information for 82 unique corresponding and operational procedures (https://www.cdc.gov/hiv/
authors and retrieved 24 survey instruments. To this group pdf/statistics/systems/nhbs/NHBS-Trans_Operations_
of surveys obtained from the literature review, CDC added Manual.pdf ). Recruitment started with a limited number
three surveys obtained from researchers who were conducting of initial participants (i.e., seeds) who were referred by
transgender studies but had not yet published their findings. community-based organizations and persons from the local
All survey items were entered into a Microsoft Access database population of transgender women. Initial recruits who

BOX. Criteria used to identify a transgender woman — National HIV Behavioral Surveillance Among Transgender Women, seven urban areas,
United States, 2019–2020
Gender identity
Transgender Transgender A gender
Sex listed at birth Woman Man woman man not listed here
Male Eligible Not eligible Eligible Not eligible Eligible
Female Not eligible Not eligible Not eligible Not eligible Not eligible
Intersex Not eligible Not eligible Eligible Not eligible Not eligible

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TABLE 1. Variables, questions, analytic coding, and measures — National HIV Behavioral Surveillance Among Transgender Women, seven urban
areas,* United States, 2019–2020
Variable Question Analytic coding Measure
Age What is your date of birth? (MM/YYYY) Age group
Race Which racial group or groups do you consider yourself to American Indian or Alaska Native, Asian, Black Race and ethnicity†
be in? You may choose more than one option. or African American, Native Hawaiian or other
Pacific Islander, or White
Ethnicity Do you consider yourself to be of Hispanic, Latina, or Yes or no
Spanish origin?
Education What is the highest level of education you completed? Never attended school; grades 1–8; grades Education level
9–11; grade 12 or GED; some college,
associate degree, or technical degree;
bachelor’s degree; or any
postgraduate studies
Household What was your household income last year from all $0–$416 (M) or $0–$4,999 (Y), $417–$833 (M) 2019 poverty level§
income, USD sources before taxes? or $5,000–$9,999 (Y), $834–$1,041 (M) or
$10,000–$12,499 (Y), $1,042–$1,249 (M) or
$12,500–$14,999 (Y), $1,250–$1,666 (M) or
$15,000–$19,999 (Y), $1,667–$2,083 (M) or
$20,000–$24,999 (Y), $2,084–$2,499 (M) or
$25,000–$29,999 (Y), $2,500–$2,916 (M) or
$30,000–$34,999 (Y), $2,917–$3,333 (M) or
$35,000–$39,999 (Y), $3,334–$4,166 (M) or
$40,000–$49,999 (Y), $4,167–$4,999 (M) or
$50,000–$59,999 (Y), $5,000–$6,249 (M) or
$60,000–$74,999 (Y), or ≥$6,250 (M)
or ≥$75,000 (Y)
Including yourself, how many people depended on No. of dependents
this income?
Disability Are you deaf or do you have serious difficulty hearing? Yes or no Disability status¶
Are you blind or have serious difficulty seeing, even
when wearing glasses? Because of a physical, mental, or
emotional condition, do you have serious difficulty
concentrating, remembering, or making decisions? Do
you have serious difficulty walking or climbing stairs?
Do you have difficulty dressing or bathing? Because of
a physical, mental, or emotional condition, do you have
difficulty doing errands alone, such as visiting a doctor’s
office or shopping?
Health care Do you currently have health insurance or Yes or no Health insurance status
access health care coverage?
What kind of health insurance or coverage do you A private health plan — through an employer Type of health insurance
currently have? or purchased directly
Medicaid — for people with low incomes,
Medicare — for the elderly and people with
disabilities, some other government plan,
TRICARE/CHAMPUS, Veterans Administration
coverage, or some other health insurance
In the past 12 months, that is, since [fill with interview Yes or no Recent health care use
month, formatted as text] of last year, have you seen a
doctor, nurse, or other health care provider?
Do you have a health care provider with whom you feel Yes or no Transgender-specific health
comfortable discussing gender-related health issues? care access
Does your current health insurance cover hormones for Yes or no Transgender-specific health
gender transition or affirmation? insurance coverage
Homelessness In the past 12 months, have you been homeless at any Yes or no Experienced homelessness
time? By homeless, I mean you were living on the
street, in a shelter, in a single room occupancy hotel
(SRO), or in a car.
Incarceration During the past 12 months, have you been held in a Yes or no Incarceration
detention center, jail, or prison for >24 hours?

See table footnotes on the next page.

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TABLE 1. (Continued) Variables, questions, analytic coding, and measures — National HIV Behavioral Surveillance Among Transgender Women,
seven urban areas,* United States, 2019–2020
Variable Question Analytic coding Measure

Exchange sex In the past 12 months, have you received money or Yes or no Exchange sex
drugs in exchange for sex?
Food insecurity In the past 12 months, did you ever cut the size of your Yes or no Food insecurity
meals or skip meals because there wasn’t enough
money for food? In the past 12 months, did you ever
not eat for a whole day because there wasn’t enough
money for food?
Abuse and In the past 12 months, have you been verbally Yes or no Verbal abuse
harassment abused or harassed because of your gender (gender-based violence)
identity or presentation?
In the past 12 months, have you been physically Yes or no Physical abuse
abused or harassed because of your gender (gender-based violence)
identity or presentation?
In the past 12 months, have you been physically abused Yes or no Physical intimate partner
or harassed by a sexual partner? violence
In the past 12 months, have you been forced to have sex Yes or no Forced sex (sexual violence)
when you did not want to? By forced, I mean physically
forced or verbally threatened. By sex, I mean any
sexual contact.
Abbreviations: GED = General Educational Development; M = monthly; Y = yearly; USD = U.S. dollars.
* Atlanta, GA; Los Angeles, CA; New Orleans, LA; New York City, NY; Philadelphia, PA; San Francisco, CA; and Seattle, WA.
† Persons of Hispanic or Latina (Hispanic) origin might be of any race but are categorized as Hispanic; all racial groups are non-Hispanic.
§ 2019 Federal poverty level thresholds were calculated on the basis of U.S. Department of Health and Human Services Federal poverty level guidelines (https://aspe.
hhs.gov/topics/poverty-economic-mobility/poverty-guidelines/prior-hhs-poverty-guidelines-federal-register-references/2019-poverty-guidelines).
¶ To assess difficulty in six basic domains of functioning (hearing, vision, cognition, walking, self-care, and independent living), based on U.S. Department of Health
and Human Services disability data standard (https://aspe.hhs.gov/reports/hhs-implementation-guidance-data-collection-standards-race-ethnicity-sex-primary-
language-disability-0).

completed the eligibility screener and were eligible were HIV Testing
interviewed, and those who completed the interview were asked to
NHBS-Trans offered all participants anonymous, blood-
recruit up to five transgender women whom they knew personally.
based rapid HIV testing. Participants who did not self-report
Those persons, in turn, completed the interview and were asked to
a previous HIV diagnosis and had a first rapid test that was
recruit others using a system of coded coupons. Participants whose
reactive received a second orthogonal rapid test (i.e., rapid-rapid
sex listed at birth was male and their gender identity included a
testing algorithm) to confirm infection. Nonlaboratory staff
gender not listed here but did not include woman or transgender
members in project areas conducted HIV rapid tests in field
woman could not recruit others. The recruitment process continued
settings under Clinical Laboratory Improvement Amendments
until the sample size was reached or data collection ended. Project
waivers (https://www.cms.gov/regulations-and-guidance/
area staff members conducted recruitment and data collection
legislation/clia/downloads/howobtaincertificateofwaiver.pdf ).
activities at established field sites (e.g., health department or
Participants received their HIV test results after completing
community-based organization’s offices) or in a mobile van parked
the interview and were referred to treatment and other health
in an established location at a field site.
and social services as needed. Participants who self-reported a
Each of seven participating project areas planned to recruit
previous HIV diagnosis, had at least one reactive HIV rapid
approximately 200 eligible transgender women. Recruited and
test, or both, and consented to specimen storage, provided
consented participants completed an interviewer-administered,
dried blood spot specimens for future laboratory testing (e.g.,
standardized, in-person anonymous questionnaire using computer
HIV viral load testing at CDC). Participants received incentive
tablets. Key questionnaire components included demographics,
payments (e.g., a gift card) for the interview and HIV testing in
sexual behaviors, alcohol use, injection and noninjection drug
person. Participant compensation for incomplete surveys could
use, HIV testing experiences, health conditions, access to care
be offered in accordance with local policies. Incentives were given
and prevention activities, gender-affirming medical treatment,
to those interviewed and tested for HIV (approximately $25 for
social support, experiences of abuse and harassment, and mental
each). Additional rewards (approximately $10) were paid to those
health, including suicidality. Each interview took an average of
who successfully recruited others. Local project areas determined
40 minutes to complete (https://www.reginfo.gov/public/do/
the amount and type of incentives deemed appropriate for the
PRAViewICR?ref_nbr=201902-0920-007 and https://www.cdc.
local populations being interviewed and tested.
gov/hiv/pdf/statistics/systems/nhbs/NHBS-Trans_CRQ.pdf).
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Qualitative Evaluation women and Hispanic participants). In addition, certain project

area staff members indicated concerns with acceptability of
During data collection, CDC conducted a surveillance
interview questions among transgender women. Differences
system evaluation using semistructured qualitative interviews
in opinions to expand the recruiter eligibility criteria allowing
(i.e., interviews with a script of open-ended questions) with
gender nonconforming participants to recruit from their
14 key project area staff members across project areas to assess
networks were observed by geographic region (e.g., East Coast
their experiences with staff member support, NHBS-Trans
versus West Coast). Staff members emphasized the importance
project development and implementation, and community
of community support and relationships for ensuring the
engagement (Rushmore J, CDC, unpublished data, 2019). The
success of the surveillance system.
interview guide is available (Supplementary Interview Guide,
Interviewers in seven project areas collectively provided
https://stacks.cdc.gov/view/cdc/137444). After data collection
feedback on 117 questionnaire items. The majority (51%) of
concluded, CDC conducted a questionnaire evaluation among
the feedback concerned the sections that were added specifically
project area interviewers to assess the general performance of
for transgender women populations (gender identity [21%] and
questions, with a focus on acceptability of questionnaire items
medical gender affirmation [9%]) and the sex behavior section
for transgender women.
(21%), which was adapted from the core NHBS questionnaire.
Major themes identified through interviewer feedback included
interview flow, research mistrust, clarity of certain questions
Results about pre-exposure prophylaxis adherence and homelessness,
Overall in the seven project areas, 1,757 participants Spanish translation, transgender cultural competency, and
completed the eligibility screener for NHBS-Trans; of these, the need for improvements in a trauma-informed approach
6.6% were seeds (Table 2). Throughout data collection as part to particularly sensitive questions (e.g., available referrals for
of the recruitment process, 5,642 coupons were distributed to crisis counseling for participants, managerial support for staff
participants to recruit their peers. A total of 1,637 (93.2%) members experiencing secondary trauma, and disclaimers and
participants were eligible, consented, and completed the introductions that explain the sensitive nature of the questions)
interview. Of these, 1,624 (99.2%) agreed to HIV testing. Of (https://store.samhsa.gov/sites/default/files/sma14-4884.pdf).
the total 1,637 participants, 29 participants did not report This feedback will be used to guide future iterations of the
identity of woman or transgender woman, resulting in a final NHBS-Trans questionnaire.
sample of 1,608 transgender women.
All NHBS-Trans project area staff members who participated
in the qualitative evaluation reported that the survey was Discussion
timely and addressed a critical need for HIV surveillance
Approximately 1,600 eligible transgender women from
in a population that is often overlooked. Although certain
seven project areas participated in the first NHBS-Trans
project areas reported recruiting a sample diverse in age, race
during 2019–2020. Data from NHBS-Trans have reaffirmed
and ethnicity, and socioeconomic status, others experienced
that transgender women need to be a priority population in
challenges with recruiting key subgroups (e.g., younger

TABLE 2. Number and percentage of screened participants, seeds,* distributed coupons, records, and HIV testing, by project area — National
HIV Behavioral Surveillance Among Transgender Women, seven urban areas,† United States, 2019–2020
Participants who Agreed to
No. of screened were seeds Distributed coupons Records§ HIV testing¶ No. of transgender
Project area participants No. (%) No. (%) No. (%) No. (%) women in final sample
Atlanta, GA 164 15 (9.2) 650 136 (82.9) 134 (98.5) 132
Los Angeles, CA 523 6 (1.2) 1,464 505 (96.6) 504 (99.8) 504
New Orleans, LA 192 20 (10.4) 708 177 (92.2) 174 (98.3) 165
New York City, NY 303 10 (3.3) 930 281 (92.7) 278 (98.9) 279
Philadelphia, PA 223 12 (5.4) 597 220 (98.7) 218 (99.1) 220
San Francisco, CA 214 26 (12.2) 780 201 (93.9) 201 (100.0) 198
Seattle, WA 138 27 (19.6) 513 117 (84.8) 115 (98.3) 110
Total 1,757 116 (6.6) 5,642 1,637 (93.2) 1,624 (99.2) 1,608
* A limited number of initial participants who were chosen by referrals from persons and community-based organizations who knew or were part of the local population
of transgender women.
† Atlanta, GA; Los Angeles, CA; New Orleans, LA; New York City, NY; Philadelphia, PA; San Francisco, CA; and Seattle, WA.
§ Total number of records includes the number of records for participants who were eligible, consented to the survey, completed the interview, and for whom the
interviewer was confident or somewhat confident in the responses to the interview questions.
¶ Among total number of records.

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preventing HIV infection (7). The disproportionate effect data analysis presentations tailored to the priorities of
of HIV infection among transgender women is the result local transgender women partner organizations [https://
of a complex layering of syndemics, and more remains to www.youtube.com/watch?v=rPEBTXUXheA] and shared
be understood (8). NHBS-Trans highlights the social and information with community members), ensuring that persons
economic factors that are contributing to this disparity. who provided these data are positioned to receive and benefit
NHBS-Trans data have been used to provide behavioral and from it (https://www.nyc.gov/assets/doh/downloads/pdf/dires/
community context for trends in HIV infection diagnoses hiv-transgender-women-factsheet.pdf ).
reported to CDC’s National HIV Surveillance System (https://
www.cdc.gov/hiv/statistics/surveillance/index.html). NHBS-
Trans data also have described a population disproportionately Limitations
affected by HIV and, thus, have provided indications of the The findings in the supplement are subject to at least
leading edge of the epidemic. CDC, along with project areas, five limitations. First, NHBS-Trans data are not nationally
has been disseminating these data. Dissemination products representative and might not be generalizable to all U.S. urban
have included the HIV Surveillance Special Report (7) and areas, nonurban areas, or all transgender women. However, the
infographics (https://www.cdc.gov/hiv/pdf/library/reports/ hidden and hard-to-reach nature of this population prevents
surveillance/cdc-hiv-surveillance-special-report-number-27- collection of nationally representative samples. Second,
infographic.pdf ), presentations (https://www.cdc.gov/hiv/ respondent-driven sampling has certain sources of bias.
pdf/statistics/systems/nhbs/cdc-hiv-nhbs-transgender-women- Groups that are more insular (i.e., more likely to recruit only
surveillance-report-2019-2020.pdf ), MMWR (9), and peer- within their own group) are more likely to be overrepresented
reviewed journals (10–13). (if recruitment chains become trapped inside the group) or
Participants in NHBS-Trans were offered HIV testing and underrepresented (if recruitment chains cannot access the
referral to care, if test results were positive. Providing HIV group) in the sample than less insular groups (14). Groups
testing and the resources to connect to care enabled NHBS- with larger networks might be overrepresented in the sample
Trans participants to know their status, seek treatment, or because more recruitment paths lead to their members. Certain
engage in future prevention strategies. Further, biologic groups might be less willing or able to participate in the survey
information on HIV status via rapid-rapid testing algorithms and would be underrepresented in the sample. This bias can
can identify gaps in HIV screening and prevention efforts for be assessed and compensated for in multiple ways. Certain
transgender women. potential sources of bias were identified and addressed by
A strong connection to the transgender communities in each NHBS-Trans project area staff members. For instance, project
project area was crucial for recruitment of participants and area staff members were encouraged to ensure that their initial
successful data collection. Project areas spent a year identifying peer recruits, or seeds, were diverse by race and ethnicity, age,
and hiring staff members and learning about and engaging geographic location, and other important factors that would
with their communities. They assembled local CABs and have the effect of increasing the insularity of recruitment and
strengthened relations between transgender communities and of homophily (i.e., groups that recruit only within their own
their health departments. Buy-in from partner organizations group). Project areas also implemented lessons learned during
was critical to the initiation and success of the project. formative assessment to mitigate potential participation bias.
In every project area, transgender and gender nonconforming For example, information from formative assessment was
persons often comprised most front-line staff members and in used to optimize location and setup of field sites so that all
many cases were in managerial roles. Including transgender population members had safe, convenient access to participants
and gender nonconforming persons as project area staff (15,16). Third, biases in enrollment and agreement to HIV
members was critical to connecting with local communities testing might result in over- or underestimation of HIV
and, consequently, the success of NHBS-Trans. Further, in infection prevalence or incidence. If those who agree to be
many cities, these staff members remained in permanent health tested differ from those who decline, in terms of age, race and
department positions after the project ended and continued to ethnicity, or sex, findings might be less generalizable. Fourth,
serve as community liaisons and representatives of transgender because NHBS-Trans was a one-time cross-sectional survey,
women in their cities. causality or directionality of the findings cannot be determined.
Throughout the preparation for NHBS-Trans, project areas Finally, the data are self-reported and are subject to recall and
explored various methods for sharing data, understanding social desirability biases.
the importance of returning findings back to the community.
Efforts are ongoing to engage the community (i.e., local

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 Supplement

Conclusion 3. Becasen JS, Denard CL, Mullins MM, Higa DH, Sipe TA. Estimating
the prevalence of HIV and sexual behaviors among the US transgender
NHBS-Trans collected for the first time behavioral and population: a systematic review and meta-analysis, 2006–2017. Am J
Public Health 2019;109:e1–8. PMID:30496000 https://doi.
contextual data through systematic biobehavioral surveillance org/10.2105/AJPH.2018.304727
of transgender women from seven participating project areas 4. Heckathorn D. Respondent-driven sampling: a new approach to the
during 2019–2020. A strong connection to the transgender study of hidden population. Soc Probl 1997;44:174–99. https://doi.
communities in each project area was crucial for recruitment org/10.2307/3096941
5. Allen DR, Finlayson T, Abdul-Quader A, Lansky A. The role of
of participants and successful data collection. NHBS-Trans formative research in the National HIV Behavioral Surveillance System.
findings highlighted in the MMWR supplement can help Public Health Rep 2009;124:26–33. PMID:19413025 https://doi.
guide community leaders, clinicians, and public health officials’ org/10.1177/003335490912400106
6. Reisner SL, Poteat T, Keatley J, et al. Global health burden and needs
efforts in improving access to and use of HIV prevention and of transgender populations: a review. Lancet 2016;388:412–36.
treatment services by transgender women. PMID:27323919 https://doi.org/10.1016/S0140-6736(16)00684-X
7. CDC. HIV infection, risk, prevention, and testing behaviors among
National HIV Behavioral Surveillance Among transgender women—National HIV Behavioral Surveillance, 7 U.S.
Transgender Women Study Group cities, 2019–2020. HIV Surveillance Special Report 27. Atlanta, GA:
US Department of Health and Human Services, CDC; 2021. https://
Narquis Barak, CrescentCare; Kathleen A. Brady, Philadelphia Department www.cdc.gov/hiv/pdf/library/reports/surveillance/cdc-hiv-surveillance-
of Public Health; Sarah Braunstein, New York City Department of Health special-report-number-27.pdf
and Mental Hygiene; Jasmine Davis, CrescentCare; Sara Glick, University 8. Singer M, Bulled N, Ostrach B, Mendenhall E. Syndemics and the
of Washington, School of Medicine, Division of Allergy and Infectious biosocial conception of health. Lancet 2017;389:941–50.
Diseases, Public Health – Seattle & King County, HIV/STD Program; PMID:28271845 https://doi.org/10.1016/S0140-6736(17)30003-X
Andrea Harrington, Philadelphia Department of Public Health; Jasmine 9. Lee K, Trujillo L, Olansky E, et al.; National HIV Behavioral Surveillance
Lopez, New York City Department of Health and Mental Hygiene; Yingbo among Transgender Women Study Group. Factors associated with use
Ma, Los Angeles County Department of Public Health; Aleks Martin, Public of HIV prevention and health care among transgender women—seven
Health – Seattle & King County, HIV/STD Program; Genetha Mustaafaa, urban areas, 2019–2020. MMWR Morb Mortal Wkly Rep
Georgia Department of Public Health; Tanner Nassau, Philadelphia 2022;71:673–9. PMID:35588092 https://doi.org/10.15585/mmwr.
Department of Public Health; Gia Olaes, Los Angeles County Department mm7120a1
of Public Health; Jennifer Reuer, Washington State Department of Health; 10. Hernandez CJ, Trujillo D, Sicro S, et al. High hepatitis C virus
Alexis Rivera, New York City Department of Health and Mental Hygiene; seropositivity, viremia, and associated risk factors among trans women
William T. Robinson, Louisiana State University Health Science Center living in San Francisco, California. PLoS One 2021;16:e0249219.
in New Orleans – School of Public Health, Louisiana Office of Public PMID:33784365 https://doi.org/10.1371/journal.pone.0249219
Health STD/HIV/Hepatitis Program; Ekow Kwa Sey, Los Angeles County 11. Hernandez CJ, Trujillo D, Turner CM, et al. Reaching trans women in
Department of Public Health; Sofia Sicro, San Francisco Department of San Francisco for efforts to eliminate hepatitis C. J Viral Hepat
Public Health; Brittany Taylor, Georgia Department of Public Health; 2021;28:1325–8. PMID:33894048 https://doi.org/10.1111/jvh.13521
Dillon Trujillo, San Francisco Department of Public Health; Erin Wilson, 12. Trujillo D, Arayasirikul S, Xie H, et al. Disparities in sexually transmitted
San Francisco Department of Public Health; Pascale Wortley, Georgia infection testing and the need to strengthen comprehensive sexual health
Department of Public Health. services for trans women. Transgend Health 2022;7:230–6.
PMID:36643058 https://doi.org/10.1089/trgh.2020.0133
Conflicts of Interest 13. Wilson EC, Hernandez CJ, Scheer S, et al. Improved PrEP awareness
and use among trans women in San Francisco, California. AIDS Behav
All authors have completed and submitted the International 2022;26:596–603. PMID:34390435 https://doi.org/10.1007/
Committee of Medical Journal Editors form for disclosure of s10461-021-03417-3
potential conflicts of interest. No conflicts of interest were disclosed. 14. Heckathorn DD. Respondent-driven sampling II: deriving valid
population estimates from chain-referral samples of hidden populations.
References Soc Probl 2002;49:11–34. https://doi.org/10.1525/sp.2002.49.1.11
15. Magnani R, Sabin K, Saidel T, Heckathorn D. Review of sampling
1. Kanny D, Broz D, Finlayson T, Lee K, Sionean C, Wejnert C; NHBS
hard-to-reach and hidden populations for HIV surveillance. AIDS
Study Group. A key comprehensive system for biobehavioral surveillance
2005;19(Suppl 2):S67–72. PMID:15930843 https://doi.
of populations disproportionately affected by HIV (National HIV
org/10.1097/01.aids.0000172879.20628.e1
Behavioral Surveillance): cross-sectional survey study. JMIR Public
16. McKnight C, Des Jarlais D, Bramson H, et al. Respondent-driven
Health Surveill 2022;8:e39053. PMID:36378503 https://doi.
sampling in a study of drug users in New York City: notes from the field.
org/10.2196/39053
J Urban Health 2006;83(Suppl):i54–9. PMID:16977493 https://doi.
2. Herbst JH, Jacobs ED, Finlayson TJ, McKleroy VS, Neumann MS,
org/10.1007/s11524-006-9102-1
Crepaz N; HIV/AIDS Prevention Research Synthesis Team. Estimating
HIV prevalence and risk behaviors of transgender persons in the United
States: a systematic review. AIDS Behav 2008;12:1–17. PMID:17694429
https://doi.org/10.1007/s10461-007-9299-3

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US Department of Health and Human Services | Centers for Disease Control and Prevention | MMWR | January 25, 2024 | Vol. 73 | No. 1