Att 5a - Public Comments

August 29, 2011

BOARD OF DIRECTORS
2011

Daniel L. Holcomb
CDC Reports Clearance Officer
Centers for Disease Control and Prevention
National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention
1600 Clifton Rd, MS-D74
Atlanta, GA 30333

Executive Committee
Dexter Louie, MD, JD, MPA
Chairperson

Re: Comment on Web-Based HIV Behavioral Survey among Men who have Sex
with Men

Rea Pañares, MHS
Vice Chairperson

Dear Mr. Holcomb:

Kathy Lim Ko
President/CEO

The Asian & Pacific Islander American Health Forum (APIAHF) thanks the Centers
for Disease Control and Prevention (CDC) for the opportunity to comment on the
Web-Based HIV Behavioral Survey among Men who have Sex with Men (MSM)
(MSM Survey). We strongly support CDC’s efforts in developing surveys to
monitor the MSM community to adequately determine risk behaviors, trends in HIV
testing and service needs. Moreover, we offer recommendations intended to help
generate credible and valid data, especially as they concern the Asian American
(AA), Native Hawaiian, and Pacific Islander (NHPI) MSM community.

Debra Nakatomi
Treasurer
Joyce O’Brien, MPH
Secretary
Bill Imada
Janice Louie, RD, BSPH, MA
Victor Kaiwi Pang

General Comments

Niyanta Spelman
Gayle Tang, MSN, RN
Wilson Wang, MD, MPA, MPH
Headquarters:
450 Sutter Street
Suite 600
San Francisco CA 94108
Main 415-954-9988
Fax 415-954-9999
www.apiahf.org

Washington D.C. Office:
1828 L Street N.W.
Suite 802
Washington, D.C. 20036
Main 202-466-7772
Fax 202-466-6444

National Advocates for
Asian American,
Native Hawaiian &
Pacific Islander Health

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Asian Americans and Pacific Islanders represent one of the fastest growing ethnic
groups in the United States, with the Asian American population alone in the U.S.
growing 43% between 2000 and 2010 and the NHPI population alone growing 35%
in the same time frame.i The Census Bureau projects that by the year 2050, the
number of Asian Americans will exceed 16 million, or more than 9% of the
population, and the number of Native Hawaiians and Pacific Islanders will be 2.6
million or .06% of the population.ii
While AA and NHPI HIV/AIDS cases account for approximately 1% of cases
nationally,iii the rate of new AIDS cases increased by fifteen percent from 2002 to
2005 in Asian Americans and Pacific Islanders.iv In addition, recent analysis of
CDC data shows that Asian Americans and Pacific Islanders were the only
racial/ethnic group with a statistically significant increase in new HIV diagnoses
(4.4%) between 2001 and 2008.v AAs and NHPIs have some of the lowest rates of
testing for HIV, compared to other ethnic groups, in which over two-thirds of Asian
Americans and over one half of Pacific Islanders have never been tested.vi
Moreover, preliminary analysis of CDC data shows that AA and NHPI HIV rates
will exceed those of Latinos in five years and African Americans in ten years, if left
unchecked. In addition, recent CDC data shows that Asian Americans and Pacific
Islander men who have sex with men ages 13-24 experienced the largest
proportionate increase, 255.6% (EAPC 30.8), among the overall MSM population. vii

AAs and NHPIs experience a variety of barriers preventing these populations from
testing for HIV, attaining quality care, achieving positive health outcomes and
maintaining continuous care. The diversity of languages spoken by AAs creates
significant barriers in the health care setting, in which 73% of AAs speak a language
other than English in their homes.viii Additional barriers include large populations
with limited English proficiency (LEP), high immigrant populations with varying
degrees of health literacy amongst AAs, economic factors and lack of culturally
appropriate care and services.
In addition, one unique barrier facing AAs and NHPIs and other communities of
color is HIV-related stigma. Nearly 70% of Asian Americans and Pacific Islanders
infected with HIV are men who have sex with men (MSM).ix AA and NHPI MSM
populations face strong cultural barriers, including homophobia and presumed
heterosexuality. Taboos over questions of sexual orientation and gender identity
place unique burdens on transgender AAs and NHPIs. HIV-related stigma and
cultural taboos directly affect the health of AA and NHPI MSM and transgender
persons by preventing them from seeking HIV testing, accessing care and
developing family support systems.
MSM Survey findings will improve our understanding of the risks and barriers
facing the MSM community as they relate to HIV testing, infection and prevention
services. The data collected from this survey will be central to moving our nation
forward in addressing the HIV/AIDS epidemic given the high numbers of infections
in the MSM community and the historical lack of data collected on this community.
As such, the Survey is consistent with the goals of Healthy People 2020 in
understanding and promoting healthy behaviors and environments, preventing HIV
infection and understanding the social determinants of health. For these reasons,
APIAHF strongly supports the collection of individual behavioral data in the MSM
Survey.
Specific Data Collection Strategies and Methodologies
As recognized by the Affordable Care Act (ACA), consistent, accurate and
standardized data collection and reporting is an essential aspect of identifying racial
and ethnic health and health care disparities, as well as those related to gender,
gender identity and sexual orientation. The following recommendations align with
implementation of the Section 4302 data collection requirements of the ACA, Title
VI of the Civil Rights Act of 1964 and Section 1557 of the ACA, which reinforces
the prohibition against discrimination by any federally conducted program or entity,
that receives funding or assistance on the grounds of race, color, national origin,
gender and disability.
For these reasons, we strongly recommend CDC consider the following data
collection strategies and methodologies in regards to the collection of demographic
data as part of the MSM Survey.

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Adopt the Proposed HHS Section 4302 Data Collection Standards for Collection of
Race and Ethnicity
On June 29, 2011, HHS released proposed data collection standards (“draft
standards”) implementing Section 4302 of the ACA. The standards address the need
to collect more granular race and ethnicity data and align more closely with the
recommendations of the 2009 Institute of Medicine (IOM) Report on Race, Ethnicity
and Language Data (IOM Report). Importantly for AA and NHPI communities, the
standards propose the use of more granular Asian, Native Hawaiian and Pacific
Islander ethnicity categories, aggregating to the broader OMB race categories.x
Given the ethnic, linguistic, and socioeconomic diversity among AA and NHPI
subpopulations and varying degree of health related disparities, granular level data is
essential to accurately accessing these factors. Therefore, we commend HHS for
addressing the need for granular race and ethnicity data in the proposed standards
and strongly encourage CDC to adopt the same standards in the MSM Survey. In
addition, we recommend CDC expand the number of Asian ethnic subgroups
provided as response options, to better identify disparities in smaller populations.
Oversample AAs and NHPIs
We urge CDC to oversample AAs and NHPIs in the MSM Survey. Because AAs
and NHPIs make up a small proportion of the overall U.S. population, nationally
representative samples tend to include small numbers of AAs and NHPIs, in
particular, making it difficult to generate stable health estimates.
AA and NHPI ethnic subgroups are incredibly diverse, differ in access to health care
coverage, are affected by different community conditions and reside in
geographically diverse areas. For example, in areas where disaggregated AA and
NHPI HIV data is available (California, Hawaii, Los Angeles, San Francisco), data
indicates that cumulative HIV incidence is higher among certain ethnic groups such
as Filipino, Chinese, Japanese, Vietnamese, and Thai. Given this diversity, it is
critical to understand the prevalence of and trends in risk behaviors, trends in HIV
testing, use of prevention services and unmet HIV prevention needs that influence
specific AA and NHPI subgroups differently.
There have been several recently released reports on HIV across racial/ethnic
communities by CDC’s Division of HIV/AIDS Prevention where data for AA and
NHPIs were not analyzed due to insufficient sample size. Oversampling of AAs and
NHPIs is critical to allow for a large enough sample size of AA and NHPIs to draw
generalizable findings. Oversampling of AAs is consistent with other CDC efforts,
such as data collection by the National Center for Health Statistics (NCHS), which
has been oversampling Asians in National Health Interview Survey data since 2006
and, more recently, in the 2011-2014 National Health and Nutrition Examination
Survey (NHANES). Therefore, we urge CDC to follow the important precedent set
by NCHS in designing and conducting the MSM Survey.
Primary Language
We urge CDC to administer the on-line survey in Asian ethnic languages,
particularly those used by the ethnic groups with high HIV rates, in addition to
English. According to the 2007-2009 American Community Survey, 70.5% of
Asian Americans speak a language other than English at home. In addition, of the 8
million people in the United States that speak Asian and Pacific languages at home,
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more than 4 million are considered “limited English proficient,” meaning they speak
English less than “very well” or not at all.xi
Language barriers are widely known to reduce rates in enrollment and lower the
quality and effectiveness of prevention, treatment and patient education programs.
Members of these communities are often linguistically isolated and continue to
encounter significant health and health care disparities. Section 4302 of the ACA
requires that any federally conducted or supported health care or public health
program, activity or survey collects and reports data on a number of demographic
factors, including primary language. HHS’ release of its draft Section 4302 data
standards take the important step of including a set of questions assessing the
respondent’s ability to speak English.
To ensure limited English proficient (LEP) persons are able to meaningful
participate in the MSM survey, we strongly recommend the survey be administered
in-language for LEP participants. Population-based surveys conducted only in
English capture a fraction of the eligible individuals from Asian ethnic groups.
Recent research has found that those who respond to surveys in English are
significantly different from those who do so in Asian languages, with the latter being
of lower socioeconomic status and experiencing potentially greater barriers in
accessing health care and information, including that disseminated by community
interventions.xii Findings from an English-only survey may thus lead to a vastly
skewed sample of Asian Americans and gross underestimation of the health
disparities affecting those with limited English proficiency.
In summary, we appreciate the opportunity to comment on the proposed HIV
Behavioral Survey among MSM. As CDC moves forward with implementing this
survey, we welcome future opportunities to work together to ensure the meaningful
inclusion of AA and NHPI participants.

Respectfully,

Kathy Lim Ko
President & CEO
Asian & Pacific Islander American Health Forum

i

Overview of Race and Hispanic Origin: 2010, The US Census Bureau (March 2011) available at
http://www.census.gov/prod/cen2010/briefs/c2010br-02.pdf.
ii
American Community Survey 2007-2009, U.S. Census Bureau.
iii
HIV/AIDS Surveillance Report: Cases of HIV Infection and AIDS in the United States and Dependent Areas in 2007 vol. 19, The
Centers for Disease Control and Prevention (2009) available at
http://www.cdc.gov/hiv/topics/surveillance/resources/reports/2007report/pdf/2007SurveillanceReport.pdf.

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iv

Asian/Pacific Islanders and HIV/AIDS, The RYA HIV/AIDS Program (August 2008) available at
ftp://ftp.hrsa.gov/hab/Asian.Pacific.pdf.
v
W. Adih, M. Campsmith, C. Williams, F. Hardnett, D. Hughes, Epidemiology of HIV among Asians and Pacific Islanders in the
United States, 2001-2008. Journal of the International Association of Physicians in AIDS Care, April 20, 2011. Available at
http://jia.sagepub.com/content/early/2011/04/19/1545109711399805.
vi
Stigma, HIV/AIDS and Asians & Pacific Islanders,” Banyan Tree Project, available at
http://www.banyantreeproject.org/extras/factsheets/btp_stigma_fs_FINAL.pdf.
vii
CDC Morbidity and Mortality Weekly Report, 06/27/08.
viii
We the People: Asians in the United States, Census 2000 Special Report, The US Census Bureau (December 2004) available at
http://www.census.gov/prod/2004pubs/censr-17.pdf.
ix
HIV/AIDS among Asians and Pacific Islanders, CDC HIV/AIDS Fact Sheet (Revised August 2008) available at
http://www.cdc.gov/hiv/resources/factsheets/API.htm.
x
The Section 4302 Draft Standards go beyond the 1997 Office of Management and Budget (OMB) standards for the classification of
federal data on race and ethnicity categories that separated the “Asian or Pacific Islander” category into two categories, “Asian” and
“Native Hawaiian or Other Pacific Islander.”
xi
Language Use in the United States: 2007, U.S. Census Bureau, American Community Survey Reports, April 2010. Available at
http://www.census.gov/prod/2010pubs/acs-12.pdf.
xii
Importance of native language in a population-based health survey among ethnic Chinese in Australia, Kam Cheong Wong and
Zhiqiang Wang. 2008. Australian and New Zealand Journal of Public Health 32(4):322-324.

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