Att 4 Public comments and responses

OMB No. 0920-0794

Transgender HIV Behavioral Survey (THBS)
PUBLIC COMMENTS

PUBLIC COMMENT #1:
From: lorte004 [mailto:[email protected]]
Sent: Friday, December 10, 2010 11:38 AM
To: OMB-Comments (CDC)
Subject: Question on Public Commenting

To whom it may concern:
I am doing a research paper for school on this issue and on the public commenting process. May
you please send me the survey that the public is allowed to comment on? Also would you be able
to tell me where the funding for this proposed project comes from?
I would like some information on the following survey:
This the numerical information I found for the document.
•

Transgender HIV Behavioral Survey (THBS)—(OMB No. 0920-0794, expires
December 31, 2010).

•

[60-Day-11-0794]

I appreciate your time and help.
Thank you,
Carolina

OMB No. 0920-0794
RESPONSE to COMMENT #1:
Attachments:

THBS Questionnaire Dec 2008.pdf;
THBS Eligibility Screener Dec 2008.pdf

Dear Carolina.
Thank you for your inquiry about the Transgender HIV Behavioral Survey for which we are currently
seeking public comment.
As you requested, attached is the questionnaire that was used in the Transgender HIV Behavioral
Survey
Pilot. This questionnaire will be revised based on findings from that pilot and public comments.
Funding for the survey has not yet been identified.
Thank you for your interest in this project.

Sincerely,
Teresa Finlayson
_________________________________
Teresa Jacobs Finlayson, PhD MPH
Epidemiologist
Division of HIV/AIDS Prevention
National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention
Centers for Disease Control and Prevention
1600 Clifton Road, NE
Mailstop E-46
Atlanta Georgia 30333
Voice: 404.639.2083
Fax: 404.639.8640
Email: [email protected]

OMB No. 0920-0794
PUBLIC COMMENT #2 (TSPN):
From: Salcedo, Bamby [mailto:[email protected]]
Sent: Saturday, January 01, 2011 10:10 PM
To: OMB-Comments (CDC)
Subject: CDC Data Recommendations
Dear Carol E. Walker:
Please find some recommendations that our Transgender Service Provider Network
came up with regarding data collection and trans individuals. Please feel free to
contact me if you have any type of questions regarding our recommendations or
anything else.
Bamby Salcedo
HIV Prevention Services
Project Coordinator
Childrens Hospital Los Angeles
Ph: (323) 361-5983
[email protected]

TRANSGENER SERVICE PROVIDER NETWORK
WWW.TSPNLA.ORG

CDC SURVEY DATA RECOMMENDATIONS 12/08/10
Process: The working group met to discuss the process of data collection from the Trans-LA study
survey tool. We reviewed the survey tools and recommend the following changes to improve the
instrument and process:.
1. Increase Compensation for survey and include transportation assistance.
2. Move pg D83 to the beginning of the survey so that participants better understand the
qualifications of the survey and better understand the various definitions used in the survey.
3. Include HIV/STI testing as an additional incentive offered in conjunction with the survey.
4. Survey is too long. The survey should be condensed to limit the overall burden for participants.
5. ACASSI interview should include training components for participants to ensure comfort and
clarity when using the ACASSI system system.

Comment [Josh Rile1]: Might it be useful to
include recommendations about what questions
could be removed or condensed, etc.
Comment [Josh Rile2]: I’m not sure what this
means but I took a stab at it.

6. Provide materials/questionnaires instruments in Spanish.
7. Spanish translation should be sensitive to and incorporate regional linguistic differences.
8. If a question on ethnicity is included ”tribal affiliation” should be added as a sub-category under
Native American.
9. Continue to offer interviews/ surveys on the computer. Completing the survey using an ACASI
system is preferable to a paper instrument, or one administered by a worker.
10. Include strengths-based questions related to resiliency.- These questions could be inserted
between questions 9-10 on pg D-5.
11. Include questions about how participants receive information and referrals to medical providers
and how competent or sensitive to transgender issues they believe their providers to be
(internet, office, friend, etc).
12. Change question as it relates to Gender at birth (c-4) – (c-5) Es9-10 ( please include specific
language related to gender)
13. On page D2, Question 5, include a question or options to specify the current type of
employment participants may have.
14.13.

Move silicone section to the health care section.

15.14.
Page 67 should be moved to the health care section. We believe everything related to
health should be included in to one section (HCT, TB, etc)

Comment [Josh Rile3]: I added this sentence
just because I think it’s interesting. I agree 

Comment [Josh Rile4]: I don’t understand this
since I haven’t seen the instrument, but I think this
should be turned into a complete sentence.
Comment [Josh Rile5]: Does this mean
currently or ever?

OMB No. 0920-0794
RESPONSE to COMMENT #2 (TSPN):
Dear Bamby Salcedo,
Thank you for your input on the Transgender HIV Behavioral Survey (THBS).
We plan to include HIV testing as part of the survey to help us understand and monitor the factors
associated with infection in this population.
We will also have a Spanish version available. Data for this survey will be collected the same way data
are collected for the National HIV Behavioral Survey which collects similar data for other populations at
risk for HIV infection. That is, THBS data will be collected through computer-assisted questionnaires,
conducted face-to-face by trained interviewers. Interviewer training will cover how to use appropriate
probes, including those used to account for regional linguistic differences in terms, and to clarify
confusing questions.
We understand the length of the survey may present a barrier to implementation. We will review the
questionnaire with our partners at the health department who conducted the pilot to determine if it can be
shortened without diminishing its ability to monitor key HIV-related behaviors and experiences among
transgender persons.
The many comments you provided on the questionnaire are also appreciated and will be considered with
the other comments received during the public comment period.
Sincerely,
Teresa Finlayson
_________________________________
Teresa Jacobs Finlayson, PhD MPH
Epidemiologist
Division of HIV/AIDS Prevention
National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention
Centers for Disease Control and Prevention
1600 Clifton Road, NE
Mailstop E-46
Atlanta Georgia 30333
Voice: 404.639.2083
Fax: 404.639.8640
Email: [email protected]

OMB No. 0920-0794
PUBLIC COMMENT #3 (NASTAD):

January 6, 2011
Carol E. Walker
Acting Reports Clearance Officer
Centers for Disease Control and Prevention
1600 Clifton Road
Atlanta, GA 30333

[email protected]

Dear Ms. Walker:
On behalf of the National Alliance of State and Territorial AIDS Directors
(NASTAD), the organization which represents the public health officials
that administer state and territorial HIV/AIDS and adult viral hepatitis
prevention and care programs nationwide, I am writing to provide
comments regarding the Centers for Disease Control and Prevention’s
(CDC) Transgender HIV Behavioral Survey (THBS) that aims to provide a
mechanism for describing and monitoring the HIV risk behaviors and HIV
prevention experiences of transgender persons. We are pleased that CDC
views addressing health disparities and social determinants of health as
key to successfully reducing new HIV/STI infections among transgender
persons of all races and ethnicities. NASTAD commends CDC for creating
new opportunities to examine how public health and communities can
assess trends and impacts in risk behaviors for HIV infection, HIV testing
behaviors, and HIV prevention services among male-to-female
transgender persons in the U.S. and its territories.
NASTAD is pleased to see that CDC’s THBS is congruent with the National
HIV/AIDS Strategy’s (NHAS) focus on reducing new infections by
intensifying HIV prevention efforts in communities where HIV is most
heavily concentrated. The strategy also calls for state and local health
departments as well as federal agencies to monitor progress towards the
strategy's goal. The proposed project addresses national goals by
providing a mechanism for describing and monitoring the HIV risk
behaviors and HIV prevention experiences of transgender persons.
We commend you for identifying health department HIV/AIDS and viral
hepatitis programs as a foundation in the nation’s public health response
to these epidemics in the U.S. As such, our members play an essential
role in providing expertise regarding the needs of impacted communities,
identifying resource needs to support a public health response to HIV/AIDS
and viral hepatitis, and maximizing the use of limited resources targeting

Carol E. Walker, CDC
January 6, 2011
Page Two
transgender communities. We encourage CDC to work with state and local health
departments to determine the most impactful ways to enhance the quality, utility,
and clarity of the information to be collected and determine how additional
information can be thoughtfully analyzed to maximize public health outcomes.
CDC has defined specific goals, objectives and measureable outcomes of the
Survey; however, we believe the length of the survey may be a barrier to the
proposed implementation plan. NASTAD looks forward to working with CDC on the
proposed Transgender Health Behavioral Survey and as you consider the ways in
which to minimize the burden of the collection of information on respondents.
Thank you again for the opportunity to provide comments on the draft survey. We
appreciate your attention to the comments above. If you have questions related to
our comments, please do not hesitate to contact me at (202) 434-8090 or by email
at [email protected].
Sincerely,

Julie M. Scofield
Executive Director

OMB No. 0920-0794
RESPONSE to COMMENT #3 (NASTAD):
Dear Ms. Julie Scofield.
We appreciate the encouraging support of the National Alliance of State and Territorial AIDS Directors
(NASTAD) for the Transgender HIV Behavioral Survey.
We understand the length of the survey may present a barrier to implementation. We will review the
questionnaire with our partners at the health department who conducted the pilot to determine if it can be
shortened without diminishing its ability to monitor key HIV-related behaviors and experiences among
transgender persons.
Thank you for your interest in this project.
Sincerely,
Teresa Finlayson
_________________________________
Teresa Jacobs Finlayson, PhD MPH
Epidemiologist
Division of HIV/AIDS Prevention
National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention
Centers for Disease Control and Prevention
1600 Clifton Road, NE
Mailstop E-46
Atlanta Georgia 30333
Voice: 404.639.2083
Fax: 404.639.8640
Email: [email protected]

OMB No. 0920-0794
PUBLIC COMMENT #4 (NCTE):

January 2, 2010
Transmitted via email
Carol E. Walker
Acting Reports Clearance Officer
Centers for Disease Control and Prevention
1600 Clifton Road, MS-D74
Atlanta, GA 30333
Re:

Proposed Data Collections- Transgender HIV Behavior Survey (0920-0794)

Dear Ms. Walker,
The National Center for Transgender Equality (NCTE) is pleased to submit these comments on
the Transgender HIV Behavior Survey (THBS). We would like to applaud the Centers for
Disease Control and Prevention (CDC) for taking steps to implement the National HIV/AIDS
Strategy.
The National Center for Transgender Equality is a national social justice organization devoted to
ending discrimination and violence against transgender people through education and advocacy
on national issues of importance to transgender people. By empowering transgender people and
our allies to educate and influence policymakers and others, NCTE facilitates a strong and clear
voice for transgender equality in our nation's capital and around the country.
I.

Who Are Transgender People?

When addressing the transgender population and its health needs, it is necessary to understand
key terms and concepts. Transgender people are people whose gender identity, expression or
behavior is different from those typically associated with their assigned sex at birth. Gender
identity is one’s internal sense of being male, female, or something else. Since gender identity is
internal, one’s gender identity is not necessarily visible to others. Additionally, gender
expression is how one represents or expresses one’s gender identity to others, often through
behavior, clothing, hairstyles, voice, or body characteristics.
Some transgender people may decide to transition from one’s gender assigned at birth to one’s
preferred gender. This period may involve accessing medical treatment to physically manifest
one’s gender identity. There is a well-established medical consensus that: 1) a person’s gender
identity is a deep-seated, inherent aspect of human identity; 2) efforts to change a person’s core
gender identity are futile and harmful; 3) some people have a gender identity that differs from
National Center for Transgender Equality
1325 Massachusetts Avenue NW, Suite 700, Washington, DC 20005
202.903.0112 ▪ www.TransEquality.org

their assigned or presumed sex at birth; 4) being transgender is, for many individuals, a serious
medical condition that requires individualized medical intervention and treatment (often
collectively known as sex reassignment), which may, depending upon the person’s individual
needs, include counseling, hormone therapy, Real-Life Experience, and a wide variety of
possible sex reassignment surgeries; and 5) sex reassignment treatments are generally extremely
safe and effective in improving both psychological and physical health and well-being.
II.

Response To The Proposed THBS

The National HIV/AIDS Strategy calls for intensified efforts to prevent new HIV infections,
especially for populations that are disproportionately affected by HIV/AIDS. It highlighted
transgender individuals’ disproportionate risk for HIV infection and a history of neglect to this
population’s health needs. The National Center for Transgender Equality and the National Gay
and Lesbian Task Force’s national survey found that transgender people are four times more
likely than non-transgender people to be infected with HIV. 1 Furthermore, the survey found that
transgender people of color experience HIV infection at exponential rates compared to that of the
general population. For example, African-American transgender respondents reported an HIV
infection rate of 24.9% while the general population has an HIV infection rate of 2.64%. These
statistics show that transgender individuals are at an elevated risk for HIV infection and
prevention efforts must be specifically tailored to this population in order to be effective.
One of the ways to expand effective approaches to HIV prevention is to support and strengthen
HIV screening and surveillance activities. The National HIV/AIDS Strategy recognizes that
federal agencies must do more to improve existing HIV surveillance to identify populations that
are at disproportionate risk for HIV infection and need targeted HIV prevention services. We
fully support improving existing HIV surveillance and getting more data on how transgender
people are affected by HIV/AIDS. We would like to voice the following concerns about the
THBS.
A.

The THBS should revise its demographics section to accurately collect data
on the transgender population and its risk for HIV infection.

We respectfully request that the target population of THBS should be expanded so that it collects
data on all transgender individuals. It focuses solely on transgender women at the expense of
transgender men and other gender non-conforming individuals. It is true that transgender women
have higher rates of HIV infection than transgender men. However, the CDC’s decision to focus
solely on transgender women means that the agency failed to recognize that a segment of
transgender men may be of elevated risk for HIV infection, especially if they have multiple
partners, have substance abuse issues, or engage in sex work. 2 There is also a dearth of data on
1

Grant, Jaime M. et al. “National Transgender Discrimination Survey Report on Health and Health Care: Findings of
a Study by the National Center for Transgender Equality and the National Gay and Lesbian Task Force.” Oct. 2010
http://transequality.org/PDFs/NTDSReportonHealth_final.pdf
2
Reisner SL et al. “A mixed methods study of the sexual health needs of New England transmen who have sex with
nontransgender men.” AIDS Patient Care STDS. 2010 Aug; 24(8): 501-13.

National Center for Transgender Equality
1325 Massachusetts Avenue NW, Suite 700, Washington, DC 20005
202.903.0112 ▪ www.TransEquality.org

HIV/AIDS for transgender population on the whole. Notably, the National HIV/AIDS Strategy
focused on all transgender individuals, and not solely on transgender women, as a population that
warrants attention for elevated risk for HIV infection.
Additionally, NCTE commends the CDC for putting two separate questions on the THBS to
appropriately inquire about a respondent’s sex assigned at birth and gender identity. As the
current THBS questionnaire recognizes, distinguishing between these two very different aspects
of a person’s life can be accomplished by asking two separate questions. However, the question
on gender identity should not force a respondent to pick a single answer from among the options
“female,” “male,” and “transgender.” A gender identity question formulated in this way does not
fully capture many transgender peoples’ gender identity. Many transgender people identify as a
woman or a man and reject being labeled transgender at all, viewing their transgender history as
part of their medical history. For other transgender people, it may be more accurate for them to
respond that their gender identity is both female and transgender or both male and transgender,
while other gender-nonconforming people may reject being categorized as a woman or a man at
all. A proposed pair of questions for sex assigned at birth and gender identity is as follows:
Sex assigned at birth (please check one):
Male
Female
Don’t know
Gender identity (please check all that apply):
Male
Female
Transgender
Moreover, we recommend that the THBS include additional questions to better understand HIV
transmission in the transgender population. A question asking about a respondent’s age is
essential for several reasons. An age question will help us understand the HIV infection risk of
each age group. It will also assist advocacy organizations and clinics effectively tailor HIV
prevention services to a variety of ages, not only to the young.
We also recommend that the THBS ask a question on whether a respondent ever engaged in sex
work. All individuals, including transgender individuals, who engage in sex work are at elevated
risk for HIV infection. 3 Accordingly, this type of information is vital to understand a
population’s risk for HIV infection.
3

Grant, Jaime M. et al. “National Transgender Discrimination Survey Report on Health and Health Care: Findings of
a Study by the National Center for Transgender Equality and the National Gay and Lesbian Task Force.” Oct. 2010
http://transequality.org/PDFs/NTDSReportonHealth_final.pdf; Harawa, Nina T. and Trista A. Bingham. “Exploring
HIV Prevention Utilization Among Female Sex Workers and Male to Female Transgenders.” AIDS Education and
Prevention, 21(4), 356-71, 2009; Xavier, Jessica et al. “Related Needs, And Lifecourse Experiers of Transgender
Virginians” Virginia HIV Community Planning Committee and Virginia Dept. of Health. Jan. 2007
http://www.vdh.state.va.us/epidemiology/DiseasePrevention/documents/pdf/THISFINALREPORTVol1.pdf

National Center for Transgender Equality
1325 Massachusetts Avenue NW, Suite 700, Washington, DC 20005
202.903.0112 ▪ www.TransEquality.org

B.

The THBS should contain culturally competent questions on transgender
population and its risk for HIV infection.

We note that surveys conducted by the CDC and other federal agencies must be conducted in a
culturally sensitive manner that recognizes people’s gender identity and expression, how people
view their bodies, and how people live their lives. Social discrimination is a key factor that
explains the health disparities seen in the transgender population. Almost 30% of the
respondents in the abovementioned national transgender survey reported delayed accessing
medical care due to medical providers’ discriminatory practices and ignorance of transgender
health issues. A transgender person’s experience of being a victim of discrimination can be
worsened when one is HIV positive. 4 The CDC should take steps to ensure that its programs are
tailored so they appropriately address transgender health issues. This will encourage transgender
individuals to provide honest answers to the THBS’s questions and access prevention services,
HIV testing, and medical care.
The THBS does not ask about respondents’ sexual behavior in a culturally appropriate way. 5
Additionally, the THBS does not ask about respondents’ sexual behavior in a manner that both
respects individual identity and that will provide useful information regarding the risks of HIV
infection for transgender people versus non-transgender people. 6 For example, a question like
“Have you ever had vaginal or anal sex with a woman?” is double-barreled and makes
assumptions about anatomy and sex behavior that may not be accurate. A more accurate way to
frame such a question would be as follows:
Have you ever had anal sex with a woman?
Have you ever had vaginal sex with a woman?
Have you ever had oral sex with a woman?
Furthermore, the following question does not accurately reflect transgender people and the wide
variety of individual sexual behavior:
“Now I’m going to ask you some questions about having sex with other men. For
these questions, ‘having sex’ means oral or anal sex. Oral sex means he put his
mouth on your penis or you put your mouth on his penis. Anal sex means you put

4

Lambda Legal. “When Health Care Isn’t Caring: Lambda Legal’s Survey on Discrimination Against LGBT People and
People Living with HIV.” 2010 http://data.lambdalegal.org/publications/downloads/whcic-report_when-healthcare-isnt-caring.pdf
5
Center of Excellence for Transgender HIV Prevention. “Recommendations for Inclusive Data Collection of Trans
People in HIV Prevention, Care & Services.” http://transhealth.ucsf.edu/pdf/data-recommendation.pdf
6
Center of Excellence for Transgender HIV Prevention. “Recommendations for Inclusive Data Collection of Trans
People in HIV Prevention, Care & Services.” http://transhealth.ucsf.edu/pdf/data-recommendation.pdf

National Center for Transgender Equality
1325 Massachusetts Avenue NW, Suite 700, Washington, DC 20005
202.903.0112 ▪ www.TransEquality.org

your penis in his anus (butt) or he put his penis in your anus (butt). Have you ever
had oral or anal sex with a man?”
As discussed previously, in order to obtain maximum response rates, questions must be asked in
a culturally appropriate manner that will encourage participation. In this case, the reference to
“other men” indicates that the interviewer considers the respondent to be a man regardless of the
individual’s gender identity. Moreover, the reference to the “penis” as the only genitalia involved
indicates an inaccurate presumption about individual anatomy and is likely to induce respondents
to not answer the question as expected. Accordingly, the following questions should be asked:
Have you ever had anal sex with a man?
Have you ever had vaginal sex with a man?
Have you ever had oral sex with a man?

Additionally, the THBS has an explanation for what it means by “sex with another man” but
does not contain an explanation for “sex with a woman.” The survey should contain an
explanation of what it means by “sex with a woman” because it should capture sexual behavior
as accurately as possible. Additionally, adding an explanation on this topic will enable THBS to
precisely refer to individuals’ anatomy and gauge their HIV infection risk.
C.

HIV Prevention and Testing Questions

The THBS is an important data collection tool to study the efficacy of HIV prevention services
and frequency of HIV testing. However, it can be improved in several ways for this purpose. For
example, the THBS does not address transgender people’s ability to access healthcare. It is wellestablished that transgender people’s socio-economic status, race/ethnicity and experiences of
societal discrimination deters them from accessing necessary medical care. Thus, it is necessary
for the THBS to address this issue thoroughly. Since transgender people have difficulties
accessing routine medical care, we also suggest that question H6 should be revised so that “your
health care provider” be replaced with “a health care provider.”
Additionally, the THBS does not ask respondents to answer questions on what kinds of
preventive measures they use to lower their risk of HIV infection besides pre- and post-exposure
prophylaxis. The THBS should ask questions on respondents’ condom use, knowledge of a
partner’s HIV status, and number of partners. If a respondent engaged in sex work, it is
important to explore when and why condoms were not used during sexual activity.
Furthermore, the THBS should have a section on substance abuse and other situations where
needle sharing is commonplace. For example, many transgender people cannot access hormones
and other medical care that can assist them transition from one gender to another in a

National Center for Transgender Equality
1325 Massachusetts Avenue NW, Suite 700, Washington, DC 20005
202.903.0112 ▪ www.TransEquality.org

professional medical setting. So, oftentimes, they will access such treatments from the black
market and may use needles that are unsanitary. 7

D.

The benefits of including additional questions to the THBS overcome the
financial costs and the burden to respondents.

The THBS is a great opportunity for researchers to collect data on HIV transmission and risk for
HIV infection amongst the transgender population. The survey can be strengthened by adding
additional questions and sections as well as revising existing questions to be culturally sensitive.
The THBS must be crafted in a way that maximizes honest answers by the respondents and,
thereby, obtain accurate data. This, in turn, will help researchers, medical professionals, and
advocacy organizations decrease HIV transmission and find out who are at the highest risk for
HIV infection. This benefit outweighs the administrative costs to adding additional questions to
the THBS.

We appreciate the opportunity to comment on the THBS and look forward to receiving the
results of the survey. Please do not hesitate to contact us if you need assistance.
Sincerely,
s/

Mul Kyul Kim, Esq.
Health Policy Counsel

7

Xavier, Jessica et al. “Related Needs, And Lifecourse Experiers of Transgender Virginians” Virginia HIV Community
Planning Committee and Virginia Dept. of Health. Jan. 2007
http://www.vdh.state.va.us/epidemiology/DiseasePrevention/documents/pdf/THISFINALREPORTVol1.pdf

National Center for Transgender Equality
1325 Massachusetts Avenue NW, Suite 700, Washington, DC 20005
202.903.0112 ▪ www.TransEquality.org

OMB No. 0920-0794
RESPONSE to COMMENT #4 (NCTE):
Dear Ms. Kim,
We appreciate the input provided from the National Center for Transgender
Equality on the Transgender HIV Behavioral Survey(THBS).
THBS was designed for surveying transgender women because this group is at
greatest risk for HIV infection. We realize that we are excluding some
transgender persons who are also vulnerable to HIV infection and we will
explore methods for collecting similar data from them as well.
We would also like to thank you and your colleagues for providing detailed
comments on the questionnaire content. Some of the suggested changes have been
made; Others will be considered with the other comments received during the
public comment period.
Thank you for your interest in this project.

Sincerely,
Teresa Finlayson
_________________________________
Teresa Jacobs Finlayson, PhD MPH
Epidemiologist
Division of HIV/AIDS Prevention
National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention Centers
for Disease Control and Prevention 1600 Clifton Road, NE Mailstop E-46 Atlanta
Georgia 30333
Voice: 404.639.2083
Fax: 404.639.8640
Email: [email protected]