Public Comments on the 60-day FRN

Document Metadata:CDC-2016-0069-0002
Attachment 7b - Public Comments

Document Details
Docket ID:

CDC-2016-0069

Docket Title:

National Health Interview Survey 0920-0214

Document File:
Docket Phase:

Notice

Phase Sequence:

1

Original Document ID:

CDC-2016-0069-DRAFT-0002

Current Document ID:

CDC-2016-0069-0002

Title:

National Health Interview Survey

Number of Attachments:

0

Document Type:

PUBLIC SUBMISSIONS

Comment from (name)

Document Subtype:
Comment on Document ID:

CDC-2016-0069-0001

Comment on Document Title: National Health Interview Survey 0920-0214
Status:

Posted

Received Date:

09/02/2016

Date Posted:

09/02/2016

Posting Restriction:

No restrictions

Submission Type:

API

Number of Submissions:

1

Document Optional Details
Status Set Date:

09/02/2016

Current Assignee:

NA

Status Set By:

Burroughs-Stokes, Kennya LaTrice (CDC)

Comment Start Date:

07/26/2016

Comment Due Date:

09/26/2016

Tracking Number:

1k0-8rob-oui0

Page Count:

1

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1

Comment:

I don't agree with the data collection. It's intrusive and not
necessary. Government needs to step back, not in each further
on our personal liberties and information.

First Name:

Lisa

Last Name:

Imerman

ZIP/Postal Code:

48329

Email Address:

Lrimerman@jlienterprises.com

Organization Name:
Cover Page:

Document Metadata:CDC-2016-0069-0003

Document Details
Docket ID:

CDC-2016-0069

Docket Title:

National Health Interview Survey 0920-0214

Document File:
Docket Phase:

Notice

Phase Sequence:

1

Original Document ID:

CDC-2016-0069-DRAFT-0003

Current Document ID:

CDC-2016-0069-0003

Title:

National Health Interview Survey 0920-0214 Comment from
(name)

Number of Attachments:

1

Document Type:

PUBLIC SUBMISSIONS

Document Subtype:
Comment on Document ID:

CDC-2016-0069-0001

Comment on Document Title: National Health Interview Survey 0920-0214
Status:

Posted

Received Date:

09/09/2016

Date Posted:

09/12/2016

Posting Restriction:

No restrictions

Submission Type:

API

Number of Submissions:

1

Document Optional Details
Status Set Date:

09/12/2016

Current Assignee:

NA

Status Set By:

Burroughs-Stokes, Kennya LaTrice (CDC)

Comment Start Date:

07/26/2016

Comment Due Date:

09/26/2016

Tracking Number:

1k0-8rt6-jagx

Page Count:

1

Total Page Count
Including Attachments:

1

Submitter Info
Comment:

See attached file(s)

First Name:

Murray

Last Name:

Penner

ZIP/Postal Code:

20002

Email Address:

mweir@NASTAD.org

Organization Name:

NASTAD

Cover Page:

444 North Capitol Street NW, Suite 339
Washington, DC 20001
(202) 434.8090 | NASTAD.org
Officers

September 9, 2016
Information Collection Review Office
Centers for Disease Control and Prevention
1600 Clifton Road NE., MS-D74
Atlanta, Georgia 30329
Docket Number: CDC-2016-0069
To Whom It May Concern:
On behalf of the National Alliance of State & Territorial AIDS Directors
(NASTAD), which represents public health officials who administer HIV and
hepatitis health care, prevention, education, and supportive service programs
funded by state and federal governments, I am writing to express the
importance of maintaining questions pertaining to hepatitis B and C
screening on the National Health Interview Survey (NHIS).
In the United States, there are approximately 5.3 million people living with
chronic hepatitis B (HBV) and/or hepatitis C (HCV), with at least 18,000
deaths annually attributed to hepatitis-related liver disease or liver cancer.
Worse, of the estimated two million people living with chronic HBV and three
million people living with chronic HCV, 65-75% do not know their diagnosis
and are not receiving the appropriate care and treatment. Without
appropriate screening, individuals living with hepatitis are unlikely to be
diagnosed, linked to and retained in care, increasing their risk of developing
liver cirrhosis and/or hepatocellular carcinoma.
Both the Centers for Disease Control and Prevention (CDC) and the U.S.
Preventive Services Task Force (USPSTF) released new HBV and HCV
screening guidelines. These aligned recommendations from the CDC and
USPSTF send a clear signal to health care professionals, policy makers, and
the public that screening for HBV and HCV is essential. Even with these
recommendations, there are screening disparities among populations that
are disproportionately impacted by hepatitis. For this reason, NHIS should
continue to include HBV and HCV screening questions on their surveys. NHIS
data on HBV/HCV screening will allow stakeholders (states, health
departments, policy makers, and providers) to monitor trends and
information that is critical to understanding the impacts of the hepatitis

Chair
DeAnn Gruber
Louisiana
Vice Chair
Jacquelyn Clymore
North Carolina
Secretary-Treasurer
Melanie Mattson
Colorado
Chair Elect
Shanell McGoy
Tennessee
Immediate Past Chair
Andrew Gans (ex officio)
New Mexico

Board Members
Susan Jones
Alaska
John Sapero
Arizona
Karen Mark
California
Michael Kharfen
District of Columbia
William Lyons
Georgia
Peter Whiticar
Hawaii
Aimee Shipman
Idaho
Eduardo Alvarado
Illinois
Randy Mayer
Iowa
Jeffrey Hitt
Maryland
Dawn Fukuda
Massachusetts
Jan Fox
Oklahoma
Shelley Lucas
Texas
Diana Jordan
Virginia
Jim Vergeront
Wisconsin
Murray C. Penner (ex officio)
Executive Director

epidemics. Additionally, these data will allow stakeholders to track progress towards
achieving national health objectives, including screening for HBV/HCV, and help determine
where best to target resources among communities most impacted.
Collecting data on HBV/HCV screening directly aligns with key actions in the Action Plan for
the Prevention, Care, and Treatment of Viral Hepatitis (the Action Plan) that is being led by
the U.S. Department of Health and Human Services. CDC’s leadership is urgently needed to
ensure the goals of the Action Plan are realized and that pertinent data is available to
stakeholders. Expanded federal investment to support outreach, prevention, and care
services for people living with and impacted by hepatitis is paramount to the work of
NASTAD and its members, and improving the NHIS is just one of the many avenues to
improve our nation’s public health and promote the health of our most vulnerable
communities.
We appreciate your attention and consideration of these comments. Please do not hesitate
to contact me at (202) 434-8090 or by email at mpenner@NASTAD.org if you have questions
related to these comments.
Sincerely,

Murray C. Penner
Executive Director

NASTAD | Bridging Science, Policy, and Public Health
444 North Capitol Street NW, Suite 339 - Washington, DC 20001 - (202) 434.8090 - NASTAD.org
2

Document Metadata:CDC-2016-0069-0004

Document Details
Docket ID:

CDC-2016-0069

Docket Title:

National Health Interview Survey 0920-0214

Document File:
Docket Phase:

Notice

Phase Sequence:

1

Original Document ID:

CDC-2016-0069-DRAFT-0004

Current Document ID:

CDC-2016-0069-0004

Title:

National Health Interview Survey 0920-0214 Comment from (name)

Number of Attachments:

1

Document Type:

PUBLIC SUBMISSIONS

Document Subtype:
Comment on Document ID:

CDC-2016-0069-0001

Comment on Document Title: National Health Interview Survey 0920-0214
Status:

Posted

Received Date:

09/10/2016

Date Posted:

09/12/2016

Posting Restriction:

No restrictions

Submission Type:

Web

Number of Submissions:

1

Document Optional Details
Status Set Date:

09/12/2016

Current Assignee:

NA

Status Set By:

Burroughs-Stokes, Kennya LaTrice (CDC)

Comment Start Date:

07/26/2016

Comment Due Date:

09/26/2016

Tracking Number:

1k0-8rtq-m91k

Page Count:

1

Total Page Count
Including Attachments:

1

Comment:

Interesting and useful website. Good luck!

First Name:

Anna

Last Name:

YALE

ZIP/Postal Code:
Email Address:
Organization Name:
Cover Page:

Dear Fundraiser,
I've got good news. If your fundraising results have been something less
than dramatic, and the thought of the next fundraiser is driving you up
the wall, then this could be the most eye-opening letter you will ever
read.
You see, I have spent many months of long hours, late nights and weekends
collecting more than 150 of the jealously-guarded secrets professional
fundraisers use to create a flood of donations. I read books. I
interviewed experts. I hunted high and low for the best, most up-to-date
information. I've put what I learned into an ebook, Stress-Free (&
Profitable) Fundraising.
My purpose? To take the stress out of your fundraising, and make it much
more profitable at the same time.
I know what it's like trying to take time out from your crazy schedule to
raise funds. You pull your hair out trying to get ready. Or…you dread the
thought of having to come up with another direct mail letter. And trying
to corral volunteers? That's like trying to round up a herd of stampeding
cattle after a lightning strike. Nobody's available and all you hear is
excuses. A lot of the time, you end up doing most or all of the work
yourself.
Not to mention all the decisions you have to make. Do we sell the same
products we did last year? How do I replace (Judy or Jack) who used to
organize all of this for me, but who has moved to another city? Where did
I put that folder with the results from last year's fundraiser? And on
and on.
You run around like a chicken with its head cut off trying to keep
everybody motivated and making sure everything gets done right. And what
does it get you? Frazzled nerves and an Extra Strength Excedrin headache.
And not always the appreciation you deserve.
Introducing Stress-Free (And Profitable) Fundraising… good fundraising
ideas

There's got to be another way. And there is. A simple solution. A stressfree solution. A much more profitable solution: Stress-Free (And
Profitable) Fundraising.
Picture for a moment the way things could be: You use the notes from your
last fundraiser to correct past mistakes. You outline a new plan and
things go like clockwork. Volunteers happily perform their assigned
tasks, without all the in-fighting. Sure, glitches happen. They almost
always do. But you handle them smoothly. And thankfully, funds flow in
even better than you expected.

THE GEORGE WASHINGTON INSTITUTE OF PUBLIC POLICY

September 23, 2016
Leroy A. Richardson
Information Collection Review Office
Centers for Disease Control and Prevention
1600 Clifton Road NE., MS–D74
Atlanta, Georgia 30329
Via: Regulations.gov
Re: National Health Interview Survey (OMB Control Number 3501–3520)
Dear Mr. Richardson,
I am pleased to respond to the Federal Register notice of July 26, 2016 concerning the National
Center for Health Statistics’ planned information collection request (ICR) to OMB to conduct the
National Health Interview Survey (NHIS) in 2017 through 2019. As a research professor at the
George Washington Institute of Public Policy, I provide staff support to the Economic Statistics
Committee of the American Economic Association (AEA). Several AEA members have described
to NCHS staff their appreciation for and reliance on NHIS data and their support for the survey’s
continuation.
The NCHS notice in the Federal Register says that the 2017 NHIS may include “short, web-based
methodological and cognitive testing activities that will inform the upcoming 2018 NHIS
questionnaire redesign.” From conversations with NCHS staff, I understand the ICR will not
specify the nature of these testing activities, that NCHS will submit the specifics of such tests for
OMB approval at a later date, and that these subsequent submissions will be considered a
“non-material change” to the collection request and so not require public notice.
In light of the importance of the NHIS for economic research, AEA members wish to have an
opportunity to provide input on the 2018 redesign, including the design of 2017 tests.
Consequently, I ask that the NHIS ICR indicate that 60 days before NCHS submits any 2017 tests
for OMB review, it will allow interested AEA members to provide input on the test designs. I
would be pleased to facilitate such an exchange.
I appreciate the chance to comment on the importance of the NHIS for economic research and
wish NCHS all the best in preparing the ICR.
Sincerely,

Andrew Reamer
Research Professor
805 21ST STREET, NW
MEDIA AND PUBLIC AFFAIRS BUILDING, SIXTH FLOOR
WASHINGTON, DC 20052
202-994-0970
FAX 202-994-8913 WEB www.gwu.edu/~gwipp

September 26, 2016
Leroy A. Richardson
Information Collection Review Office
Centers for Disease Control and Prevention
1600 Clifton Road NE., MS-D74
Atlanta, Georgia 30329
Re: National Health Interview Survey (NHIS) Revision (OMB No. 0920-0214)
Dear Mr. Richardson,
The Academy of Nutrition and Dietetics (the “Academy”) appreciates the opportunity to
submit comments to the Centers for Disease Control and Prevention (CDC) related to its
July 26, 2016 information collection, “National Health Interview Survey (NHIS) Revision.”
Representing more than 100,000 registered dietitian nutritionists (RDNs),1 nutrition and
dietetic technicians, registered (NDTRs), and advanced-degree nutritionists, the Academy
is the largest association of food and nutrition professionals in the United States and is
committed to improving the nation’s health through food and nutrition across the lifecycle.
The Academy supports the NHIS as necessary for the proper performance of the functions
of the CDC and will have significant practical utility. We agree with the CDC that the NHIS is
“instrumental in providing data to track health status, health care access, and progress
toward achieving national health objectives.”2 As the information collection notes, the
NHIS is “the single most important source of statistics to track progress toward the
National Health Promotion and Disease Prevention Objectives [and] ‘Healthy People
2020,’” two vitally important government initiatives.
The Academy supports the inclusion of the proposed supplemental questions for 2017 and
the continued and enhanced supplemental topics from 2016. Specifically, we applaud the
focus on topics in which nutrition plays a fundamental role in preventing and treating.
Many of these topics have been included: alternative and integrative medicine, cognitive
disability, and receipt of culturally and linguistically appropriate health care services,
epilepsy, Crohn's disease and colitis, diabetes, disability and functioning, family food
security, heart disease and stroke treatment and prevention, and children's mental health.
These are critical topics and the importance of good nutrition in their prevention and
amelioration cannot be overstated.

The Academy recently approved the optional use of the credential “registered dietitian nutritionist (RDN)”
by “registered dietitians (RDs)” to more accurately convey who they are and what they do as the nation’s food
and nutrition experts. The RD and RDN credentials have identical meanings and legal trademark definitions.
1

National Health Interview Survey. National Center for Health Statistics website, updated September 13,
2016. Available at http://www.cdc.gov/nchs/nhis/index.htm. Accessed September 22, 2016.
2

We offer the below suggestions for improvement and clarification as the final survey is
developed:


Family Questionnaire
o Module 4, Section Name “Health Status and Limitation of Activities:”





Question ID “FHS.270,” Page 39: Include answer code related to
swallowing or chewing difficulty.3



Question ID “FHS.350,” Page 73: Include answer code related to
swallowing or chewing difficulty.4

Child Questionnaire
o Module 11, Section Name “Child Conditions, Limitation, Health Status:”


Question ID “CHS.115_10.000,” Page 70: The question text may be
made more clear if were to read “During the past 12 months, has [fill:
S.C. name] had any difficulty speaking, such as the following
conditions…”



Question ID “CHS.270_00.000,” Page 77: By revising the question to
ascertain whether there is difficulty (or not) seeing at certain times of
the day, the question could help capture conditions such as severe
vitamin A deficiency.5



In questions related to family food security, the Academy understands that the tool
has been validated by the USDA ERS without the incorporation of religious or
cultural reasons, but we encourage an option to clarify that a limitation of meals or
restriction of consumption may be for religious or cultural reasons (e.g., Ramadan).



Recognizing the efforts to develop the questionnaire in multiple languages, the
Academy encourages the CDC to ensure the design of the NHIS accounts for
differences in health literacy and clarity among multicultural respondents.



Although it is difficult to ascertain the extent to which new technologies will be
utilized in the NHIS, the Academy suggests the burden of collection could be
minimized through the use of computer kiosks, handheld devices, and the use of
pictorial formats.

The Academy sincerely appreciates the opportunity to offer comments regarding the NHIS
and is grateful for the important work the CDC is undertaking. Please contact either Jeanne
Blankenship by telephone at 312-899-1730 or by email at jblankenship@eatright.org or
See, Heiss CJ, Goldberg L, Dzarnoski M. Registered dietitians and speech-language pathologists: an important
partnership in Dysphagia management. J Am Diet Assoc. 2010;110(9):1290, 1292-3.
3

4

Ibid.

See, Nordin SM, Boyle M, Kemmer TM. Position of the academy of nutrition and dietetics: nutrition security
in developing nations: sustainable food, water, and health. J Acad Nutr Diet. 2013;113(4):581-95.
5

2

Pepin Tuma by telephone at 202-775-8277 ext. 6001 or by email at ptuma@eatright.org
with any questions or requests for additional information.
Sincerely,

Jeanne Blankenship, MS RDN
Vice President
Policy Initiatives and Advocacy
Academy of Nutrition and Dietetics

Pepin Andrew Tuma, Esq.
Senior Director
Government & Regulatory Affairs
Academy of Nutrition and Dietetics

3

Founders
Peggy Rajski
Randy Stone (1958-2007)
James Lecesne

Board of Directors
Michael Norton
Chair

September 26, 2016
Jeffrey M. Zirger
Information Collection Review Office
Centers for Disease Control and Prevention
1600 Clifton Road NE., MS-D74
Atlanta, GA 30329

Chris Allieri
Co-Vice Chair

Lara Embry, Ph.D.
Co-Vice Chair

Phil Armstrong
Treasurer

Brian Winterfeldt
Secretary

Ruben Ramirez
Member At Large

Meredith Kadlec
Chair Emeritus

Caroline Bird
Ben Boyd
Lindsay Chambers
Brian Dorsey
Jeffrey Fishberger, MD

RE: Comment Request for Project: National Health Interview Survey (NHIS)
Docket No. CDC-2016-0069
The Trevor Project is pleased to have the opportunity to deliver comments regarding
the National Health Interview Survey (NHIS). The Trevor Project is the leading
national nonprofit organization providing crisis intervention and suicide prevention
services to lesbian, gay, bisexual, transgender and questioning (LGBTQ) youth
through age 24. We work to save young lives through our accredited free and
confidential lifeline; our secure instant messaging services which provide live help
and intervention; our social networking community for LGBTQ youth; and our inschool workshops, educational materials, online resources, and advocacy. Our
comments will focus on three main recommendations: the need to add a suicide
screening tool to the survey; the need to include sexual orientation and gender
identity questions; and privacy concerns for youth. Implementing these recommended
changes will allow the Centers for Disease Control and Prevention (CDC) to get a
more accurate and comprehensive understanding of the public health experiences of
the United States population.

Zack Hicks
Michaela Mendelsohn

The Importance of Suicide Screening

Gina Munoz
Amit Paley
Raul Perea-Henze, MD
Kevin Potter
Peggy Rajski
Adam Shankman
Stacy Smithers
Linda Spooner, MD
Jeffrey Paul Wolff
Abbe Land
Executive Director & CEO

Suicide is the second leading cause of death among youth nationallyi and the tenth
leading cause of death overall in the United States.ii It is a public health issue that is
preventable. Indeed, the CDC states in a violence prevention handout that “the
economic and human cost of suicidal behaviour to individuals, families, communities
and society makes suicide a serious public health problem.”iii Given that the NHIS
focuses on public health issues, it is imperative that a suicide screening tool is added
to the survey for adults and youth. We commend the CDC for including some
coverage of mental health issues within the survey. Specifically the survey contains a
set of questions for youth and adults that serve as a depression screening tool. While
this information is extremely helpful and can be an important component in suicide
prevention, it does not measure past or current suicidal ideation or attempts. In order
to gain full insight into suicide the NHIS must include suicide screening questions.
Obtaining this information on a national scale can build the data we have and greatly
increase our ability to study and understand suicide, including minority populations

such as LGBTQ individuals. The NHIS and other national surveys have made great
strides in gathering data on mental health issues, however it is crucial that we expand
that to specifically focus on suicide. There is a severe lack of research and
surveillance on suicide in the LGBTQ community and adding a suicide screening tool
(along with sexual orientation and gender identity questions) would help ameliorate
this.
Federal Surveys: The Importance of Sexual Orientation and Gender Identity
Data
Measuring LGBTQ people in research and large-scale government surveillance
systems has received a lot of attention recently. This is largely due to the clear and
considerable research that indicates the LGBTQ population faces significant health
disparities and has a higher risk of many negative health outcomes, including cancer,
obesity and many others. Research shows that LGB youth often suffer from disparate
rates of substance abuse, depression, suicidal ideation, harassment, abuse, sexually
transmitted diseases, including HIV, and unintended pregnancy.iv Yet the majority of
population-based surveys and surveillance systems fail to include basic demographic
questions such as sexual orientation and gender identity (SOGI) measures. The CDC
and several other federal government agencies have recognized this gap and have
done considerable work to include SOGI questions in regularly occurring surveys but
there is still a significant amount of work to be done, including modifications to the
NHIS.
There is great movement occurring to finally recognize the importance of one’s
sexual orientation and gender identity as basic demographic information, and SOGI
questions should be included in all population based surveys. Indeed, the Obama
Administration has devoted significant attention to these issues recently with the
creation of an inter-agency task force to determine appropriate wording for surveys.
Since that task force has ended, we understand that the administration is now pushing
federal agencies such as Health & Human Services and the CDC to determine
appropriate SOGI question wording to add to the surveys they administer. The
Trevor Project would like to reiterate the importance of obtaining this data and
normalizing the collection of it by adding SOGI questions to the demographics
section of every survey.
With the inclusion of SOGI questions on the NHIS we can obtain far more data and
gain a better understanding of the LGBTQ population, including youth and adults.
This information will in turn allow for the development of more targeted
interventions and better prevention programs and policies.
The Trevor Project
Los Angeles - 8704 Santa Monica Blvd. Suite 200 West Hollywood, CA 90069
New York - 575 8th Ave #501 New York, NY 10012
DC - 1200 New Hampshire Ave. NW Suite 300 Washington, DC 20036
p 310.271.8845 | f 310.271.8846 www.thetrevorproject.org

Adoption of Best Practices for Sexual Orientation and Gender Identity
Demographic Questions (Adult Survey)
We thank the CDC for already including a sexual orientation question on the NHIS.
The question wording keeps with best practices in obtaining SOGI information. The
NHIS does, however, need to add a measure to determine gender identity.
LGBTQ researchers and advocates have spent years researching and testing
appropriate question wording to include on surveys to obtain SOGI demographic
data. Testing suggests that the “two step” approach to asking about sex assigned at
birth and gender identity, recommended below, yields the most accurate results and
this is recognized as the gold standard question in determining gender identity.v In
keeping with best practices in the field, our recommended data collection measures to
improve the quality, utility, and clarity of information collected in the NHIS are as
follows:
(1) The adult survey should be modified so that the interviewer asks about the
respondent’s “sex assigned at birth” rather than recording the interviewee’s “gender.”
The question should include the following options:
a. Male
b. Female
(2) The adult survey needs to include a follow-up question asking about the
respondent’s “current gender identity” and include the following options:
a. Male
b. Female
c. Trans male/Trans man
d. Trans female/Trans woman
e. Genderqueer/Gender non-conforming
f. Different identify (please specify): __________
g. Prefer not to answervi
To provide for situations in which the interviewer is asked about the definition of
“trans” or “gender non-conforming,” we recommend the inclusion of interviewer
notes with language modeled on the following notes from the gender identity module
of the Behavioral Risk Factor Surveillance System:
INTERVIEWER NOTE: If asked about definition of transgender:
Some people describe themselves as transgender when they experience a
different gender identity from their sex at birth. For example, a person born
into a male body, but who feels female or lives as a woman would be
The Trevor Project
Los Angeles - 8704 Santa Monica Blvd. Suite 200 West Hollywood, CA 90069
New York - 575 8th Ave #501 New York, NY 10012
DC - 1200 New Hampshire Ave. NW Suite 300 Washington, DC 20036
p 310.271.8845 | f 310.271.8846 www.thetrevorproject.org

transgender. Some transgender people change their physical appearance so
that it matches their internal gender identity. Some transgender people take
hormones and some have surgery. A transgender person may be of any sexual
orientation—straight, gay, lesbian, or bisexual.
INTERVIEWER NOTE: If asked about definition of gender nonconforming:
Some people think of themselves as gender non-conforming when they
do not identify only as a man or only as a woman.vii
To provide for situations in which the interviewer is asked about the definition
of “gender identity,” we recommend the inclusion of interview notes with
language modeled on the following adaptation from the Gender Identity in
U.S. Surveillance group’s best practices:
INTERVIEWER NOTE: If asked about the definition of gender
identity:
Gender identity refers to a person’s internal sense of themselves (how
they feel inside) as being male, female, or another gender. This may be
different or the same than a person’s assigned sex at birth.viii
It is critical that gender identity and sex assigned at birth be self-reported by clients
rather than assumed or guessed by the interviewer. Interviewers’ assumptions about
the gender identity and sex assigned at birth of interviewees may be incorrect,
particularly for transgender and gender non-conforming clients, overlooking a
particularly vulnerable population and compromising the validity of the data. The
Gender Identity in U.S. Surveillance (GenIUSS) Group, the authority on current best
practices for identifying transgender and gender non-conforming respondents in
population-based surveys, recommends self-reporting as the scientifically rigorous
procedure for gathering information on sex assigned at birth and gender identity.ix

Youth Survey
Research shows that LGBTQ youth, as well as adults, face significant health
disparities, but we have very little surveillance data regarding these disparities. We
did recently receive some new surveillance data from the CDC’s Youth Risk
Behavior Survey (YRBS), which for the first time ever received nationally
representative results for sexual minority youth. Analysis from the YRBS found that:
LGB youth seriously contemplate suicide at almost three times the rate of
heterosexual youth; LGB youth are almost five times as likely to have actually
The Trevor Project
Los Angeles - 8704 Santa Monica Blvd. Suite 200 West Hollywood, CA 90069
New York - 575 8th Ave #501 New York, NY 10012
DC - 1200 New Hampshire Ave. NW Suite 300 Washington, DC 20036
p 310.271.8845 | f 310.271.8846 www.thetrevorproject.org

attempted suicide; and of all the suicide attempts made by youth that were significant
enough to require medical treatment, LGB youth’s attempts were almost five times as
likely to require medical treatment than heterosexual youth.x While this data is very
useful, the questions asked on the YRBS do not constitute a complete suicide
screening instrument and we therefore recommend that the youth survey of the NHIS
include suicide screening questions as well.
In order to uncover health disparities in the LGBTQ youth the NHIS must add SOGI
questions for youth. We recommend that the sexual orientation question currently
asked on the NHIS for adults should be used for youth, including the same wording.
The sexual orientation question should read:
(1). Do you think of yourself as:
1. Gay/Lesbian, that is [not straight]
2. Straight, that is not [gay/lesbian or gay]
3. Bisexual
4. Something else
5. I don’t know the answer
6. Refused to answer
Because the field of social science research has not yet identified a gender identity
question that yields accurate results for youth populations, we recommend the CDC
use the most current gender identity question asked on the YRBS. This question is
reviewed after each survey is conducted and is consistently tweaked to obtain the
most accurate results.
Privacy Concerns for Youth
In order to add SOGI questions for youth the survey administration method must be
altered in order to ask these questions in a way that will be safe for all youth. The
survey is currently administered in the presence of an adult parent or guardian,
potentially putting the youth in uncomfortable or unsafe positions to disclose personal
information. Even if interviewers ask parents/guardians to step outside the room
while youth complete their survey it’s highly possible that they may overhear
answers. The same may be true if the questions were asked over the phone. We
recommend assessing the feasibility of asking youth questions online or in another
setting to allow for the greatest privacy for youth. It is of the utmost importance that
youth have privacy when answering SOGI questions because there is potential for
rejection, psychological harm and even violence when parents/guardians learn that
their child is or may be LGBTQ. Despite recent advances towards equal rights for the
LGBTQ community, societal attitudes towards LGBTQ youth in particular vary
The Trevor Project
Los Angeles - 8704 Santa Monica Blvd. Suite 200 West Hollywood, CA 90069
New York - 575 8th Ave #501 New York, NY 10012
DC - 1200 New Hampshire Ave. NW Suite 300 Washington, DC 20036
p 310.271.8845 | f 310.271.8846 www.thetrevorproject.org

greatly, and many adults still disapprove or do not accept their child’s LGBTQ
identity; this can have devastating consequences. For example, LGB youth who
come from highly rejecting families are over eight times as likely to have attempted
suicide than their LGB peers who reported no or low levels of family rejection.xi
Additionally, 40% of homeless youth are LGBTQ and the number one reason
LGBTQ youth cited as the reason for being homeless was family rejection.xii While
SOGI data for youth is important to obtain, we only recommend that it be gathered if
these privacy concerns can be addressed.
Conclusion
The need to implement SOGI questions on the NHIS for youth and adults is
paramount and The Trevor Project thanks the CDC for taking steps in the NHIS and
other surveys to include SOGI measures. Data is a critical when advocating for
programs and policies to meet the needs of youth, and if Trevor is going to achieve its
mission of ending LGBTQ youth suicide, the data obtained by the NHIS would be
invaluable. The data will also better inform the CDC’s and other agencies’ prevention
efforts. We look forward to more inclusive data collection so we as a society can
better address suicide and other major public health concerns. Thank you again for
the opportunity to provide comments and we look forward to our continued
collaboration.
If you have any questions regarding these comments, please contact Amy
Loudermilk, Associate Director of Government Affairs at 202-391-0834 or
Amy.Loudermilk@TheTrevorProject.org.

Sincerely,

Abbe Land
Executive Director & CEO
i

CDC, NCIPC. Web-based Injury Statistics Query and Reporting System (WISQARS) [online]. (2010) {2013
Aug. 1}. Available from: www.cdc.gov/ncipc/wisqars.
The Trevor Project
Los Angeles - 8704 Santa Monica Blvd. Suite 200 West Hollywood, CA 90069
New York - 575 8th Ave #501 New York, NY 10012
DC - 1200 New Hampshire Ave. NW Suite 300 Washington, DC 20036
p 310.271.8845 | f 310.271.8846 www.thetrevorproject.org

ii

American Foundation for Suicide Prevention. Suicide Statistics. Retrieved from: https://afsp.org/aboutsuicide/suicide-statistics/
iii CDC. Suicide Prevention: A Public Health Issue. Retrieved from:
https://www.cdc.gov/violenceprevention/pdf/asap_suicide_issue2-a.pdf
iv Hauser, D. (2010). School Environment, Health Risk Behavior and Academic Failure: Linked for LGBT Youth.
Washington, DC: Advocates for Youth. Retrieved from:
http://www.advocatesforyouth.org/storage/advfy/documents/yrbs-glbt.pdf
v The GenIUSS Group. (2014). Best Practices for Asking Questions to Identify Transgender and Other Gender
Minority Respondents on Population-Based Surveys. J.L. Herman (Ed.). Los Angeles, CA: The Williams Institute.
vi Ibid.
vii Baker, Kellan, and Margaret Hughes. “Sexual Orientation and Gender Identity Data Collection in the
Behavioral Risk Factor Surveillance System.” Center for American Progress. Center for American Progress, 29
Mar. 2016. Web. 14 June 2016.
viii The GenIUSS Group. (2014). Best Practices for Asking Questions to Identify Transgender and Other Gender
Minority Respondents.
ix The GenIUSS Group. (2014). Best Practices for Asking Questions to Identify Transgender and Other Gender
Minority Respondents.
x Kann, Laura. O’Malley Olsen, Emily. McManus, Tim. et al. Sexual Identity, Sex of Sexual Contacts, and HealthRelated Behaviors Among Students in Grades 9-12: Youth Risk Behavior Surveillance. MMWR Surveill. Summ
2016;65.
xi Family Acceptance Project™. (2009). Family rejection as a predictor of negative health outcomes in white and
Latino lesbian, gay, and bisexual young adults. Pediatrics. 123(1), 346-52.
xii Durso, L.E., & Gates, G.J. (2012). Serving Our Youth: Findings from a National Survey of Service Providers
Working with Lesbian, Gay, Bisexual, and Transgender Youth who are Homeless or At Risk of Becoming
Homeless. Los Angeles: The Williams Institute with True Colors Fund and The Palette Fund.

The Trevor Project
Los Angeles - 8704 Santa Monica Blvd. Suite 200 West Hollywood, CA 90069
New York - 575 8th Ave #501 New York, NY 10012
DC - 1200 New Hampshire Ave. NW Suite 300 Washington, DC 20036
p 310.271.8845 | f 310.271.8846 www.thetrevorproject.org