Att 2a_60dy FRN Public Comments

BEFORE THE UNITED STATES DEPARTMENT OF
HEALTH AND HUMAN SERVICES
CENTERS for DISEASE CONTROL and PREVENTION
Agency Information Collection Activities;
Proposed Data Collection Submitted;
for Public Comment and Recommendations

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83 FR at 62865
Docket ID CDC-2018-0102

Submitted via www.regulations.gov
COMMENTS OF WHITMAN-WALKER HEALTH
Whitman-Walker Health (WWH or Whitman-Walker) submits these comments in
response to the Centers for Disease Control and Prevention’s (CDC) request for information
published on Dec. 6, 2018. While the agency’s notice is brief, we strongly support the goal of
the research, which is aligned with the Department of Health and Human Services’ (HHS)
broader efforts to stop the spread of HIV. The proposed research appears well-designed to
measure the impact of multiple technology-assisted public health techniques.
EXPERTISE AND INTEREST OF WHITMAN-WALKER HEALTH
Whitman-Walker Health is a community-based, Federally Qualified Health Center
offering primary medical care and HIV specialty care, community health services and legal
services to residents of the greater Washington, DC metropolitan area. WWH has a special
mission to the lesbian, gay, bisexual and transgender members of our community, as well as to
all Washington-area residents of every gender and sexual orientation who are living with or
otherwise affected by HIV. In calendar year 2018, more than 20,000 individuals received health
services from Whitman-Walker.
Whitman-Walker has been a nationally recognized leader in HIV treatment and
prevention for almost four decades. Our staff of almost 40 physicians, physician assistants,
nurses and nurse practitioners, and medical assistants provided care to 3,505 people living with
HIV in calendar year 2017. WWH has been at the forefront of the Nation’s response to the

epidemic since the very beginning. Through direct care and participation in extensive research
funded by the Federal Government and by pharmaceutical companies, we have participated in
the breakthroughs in HIV treatment and prevention which have transformed HIV from a largely
untreatable, terminal disease to a manageable chronic condition, and which have made it possible
to envision an end to the epidemic in our lifetimes. We also are a national leader in providing
expert, affirming health services, including HIV treatment and prevention services, to gay,
bisexual, and same-gender-loving men, including men of color. In calendar year 2017, 8,633 of
WWH patients identified as gay, bisexual or otherwise non-heterosexual males. Of those
patients, 2,663 identified as Black or African-American men, and 1,406 identified as Hispanic or
Latino.
COMMENTS
Population of Interest: The CDC has identified an appropriate population for this
research effort. The HIV epidemic is growing quickly in same-gender-loving men in African
American, Black, Hispanic and Latino communities.
Privacy: Technology-assisted HIV prevention techniques have the opportunity to reduce
health disparities by lowering barriers to accessing HIV testing, treatment, and prevention
resources, but increase risks of accidental disclosure of private health information. HIV and
LGBT status continues to carry immense stigma in many communities, particularly those across
the rural South. Due to stigma, disclosing HIV status and sexual practices or identity has
potential health risks. The CDC could put appropriate safeguards in place to protect participants
from a potential data breach, including making study applications password secured, making
low-profile application icons available to participants, and encrypting survey responses.

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Study Design: The study design implicitly creates a participant bias toward men with
smart phones and internet access. Using internet websites to recruit and communicate with
respondents excludes low-income participants who cannot afford smart phones or internet
access. CDC could ensure they are reaching the right communities by supporting, promoting, and
conducting respondent recruitment and participation in public libraries and other free educational
institutions in study states.
The study appears well designed to capture information about the efficacy of health
promotion activities in linking people to appropriate HIV treatment or prevention services using
web-based tools. We are pleased that each study arm receives an HIV test, the proven
intervention, before they are divided into experimental groups. The CDC is using best practices
by distributing the health intervention with established benefits to the widest population of their
sample.
Limitations of the Study and Need for More Community Consultation: The study is
likely to reach individuals with sufficient access to resources, education, and trust of the
medical/public health establishment, and governmental agencies, to appreciate the CDC’s intent
and the importance of the project. However, many in the populations most heavily and
disproportionately affected by HIV – Black or African American men, Hispanic or Latino men,
and especially young men of color – are very distrustful of the medical establishment and the
government – especially the federal government nowadays – and may not understand or trust the
efforts to keep their highly sensitive information confidential. Many Latinex individuals may be
particularly fearful of participation in a federal government initiative, given concerns about the
actions of immigration officials and agencies. Other individuals may be fearful of HIV-themed
mailings because their sexual orientation or practices are concealed from family members or
neighbors. Therefore, this project is unlikely to reach many of the most at-risk individuals. We
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recommend that the CDC engage in more focused community consultations – including focus
groups and other measures – to learn more about community concerns and how they might be
more effectively addressed.
Response Burden: While WWH cannot assess the quality, clarity or utility of the
information collected without seeing the research questions; the estimated response burden
seems to align with the medium and purpose of the study and the response burden appears
reasonable for the length of the study and benefit provided to participants.
CONCLUSION
Whitman-Walker Health acknowledges that the study population is well chosen, the
study design is thoughtful and innovative, and the study purpose is necessary and essential to the
HHS’s mission to advance the public health and their goal of ending the spread of HIV. We note
that the potential harms to respondents are reasonable and manageable in light of the potential
benefits. WWH supports the CDCs continued efforts to create more effective HIV prevention
and treatment linkages in African-American and Latino communities of MSM.
Respectfully submitted,

Daniel Bruner, JD, MPP
Senior Director of Policy
[email protected]
(202) 939-7628

Benjamin Brooks, JD, MPH
Assistant Director of Policy
[email protected]
(202) 797-3557

WHITMAN-WALKER HEALTH
1342 Florida Avenue NW
Washington, DC 20009
February 4, 2019

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