LULAC comment letter - 27OCT2025

League of United Latin American Citizens
NA TIONA L P R E S I D E NT
R OMAN PALOMARES
C HIEF EXECUTIVE OFFICER
JUAN PROAÑO
NA T I O NA L O F F I C E R S
Do min go Garcia
Immediate Past President
M aggie R ive ra
Treasurer
S e b a st i a n S a n c h e z
Youth President
A n a V a l e n zu e l a
VP for Elderly
L u pe T o r r e s
VP for Women
A n a st a c i o L o pe z
VP for Youth
A ric H e rre ra
VP for Young Adults
J o se B a r r e r a
VP for Farwest
E m m a L o za n o
VP for Midwest
R ame ry De Lu n a
VP for Northeast
M a r i C o r e g e do
VP for Southeast
R ay M an ce ra
VP for Southwest
Gabrie l Po rt u gal
VP for Northwest

S TA TE DI R E C TOR S
A l m a Yu b e t a
Arizona
R e y H e r n a n de z
Arkansas
J a c o b S a n do v a l
California
G i l da G o l de n t a l
District of Columbia
A si a C l e r m o n t
Florida
C e ce lia Garcia
Illinois
E dw a r d M o r e n o
Iowa
M a l u E l i zo n do
Nevada
S u e c h e t R o dr i g u e z
New Jersey
Fre d B aca
New Mexico
A licia Pagan
Ohio
C a r l o s F a r j a r do
Puerto Rico
G a b r i e l R o sa l e s
Texas
B e lia Paz
Utah
J a i m e A l v a r a do
Wisconsin
(v.32)

October 27, 2025
Jeffrey M. Zirger, PhD
Lead, Information Collection Review Office
Office of Public Health Ethics and Regulations, Office of Science
Centers for Disease Control and Prevention (CDC)
1600 Clifton Road NE, MS-D74
Atlanta, Georgia 30329
RE: LULAC Comment on Extension of Generic Clearance for Emergency Epidemic
Investigations (EEIs), OMB Control No. 0920-1011
Dear Dr. Zirgler:
The League of United Latin American Citizens (LULAC), the nation’s oldest Latino
civil rights organization, submits this comment regarding the Centers for Disease
Control and Prevention’s (CDC) request for a three-year extension of the Generic
Clearance for Emergency Epidemic Investigations (EEIs) under OMB Control No.
0920-1011, scheduled to expire on December 31, 2025.
CDC states that this extension is essential for rapid data collection during unexpected
outbreaks—whether biological, chemical, radiological, or of unknown origin. The
agency explains that immediate action is necessary to identify causes, prevent public
harm, and implement control measures. CDC also notes that participation in these
investigations is voluntary, that respondents may include members of the general public,
and that data collected may include interviews, surveys, medical record abstraction,
laboratory samples, and environmental assessments.
LULAC understands the urgency. When an unknown threat moves through a
community, hesitation can cost lives. Public health depends on the ability to act quickly
and adapt to evolving conditions. Yet, for the Latino and immigrant families we
represent, speed without clearly articulated protections does not feel like safety—it feels
like exposure. It is not the pace of the response that raises concern, but the absence of
boundaries around how data collected during that urgency may be used.
According to the Urban Institute, one in six adults in immigrant families avoids
interacting with public systems because they fear their personal information could be
used for immigration enforcement.¹ According to reporting in Wired Magazine,
Immigration and Customs Enforcement has recently gained unprecedented access to
Medicaid beneficiary data affecting tens of millions of

1150 18th Street, NW, Suite 275 • Washington, DC 20036 • (202) 833-6130 • FAX (202) 833-6135 • www.LULAC.org

League of United Latin American Citizens
individuals.² When government institutions collect sensitive data—even for legitimate purposes—the
possibility of data migrating into enforcement systems is enough to deter participation. Academic researchers
confirm the same: according to McLaughlin and Alfaro-Velcamp, immigrants frequently decline participation
in research because disclosing information exposes legal vulnerability.³ The CDC may call participation
voluntary; for many Latino families, saying no is not optional—it is protective..
Language access also determines whether participation is meaningful. Research shows that when clinical
trials fail to fully translate consent forms and study materials, Latino participation drops. According to
Neuman, Vallejo, Matsuo, and Roman, the absence of translated consent forms directly reduces enrollment
in cancer clinical trials.⁴ Translation is not a courtesy; it is a prerequisite for informed consent. Likewise,
public health often misinterprets immigrant health outcomes by focusing on cultural differences instead of
structural barriers. According to Hamilton, immigrant health research is frequently distorted by comparisons
that fail to account for context.⁵ According to Young and Madrigal, even the documentation of immigration
status in research has historically been handled in ways that increase stigma rather than build trust.⁶
These realities require EEIs to do more than move quickly—they must move ethically. CDC can achieve both
by adopting safeguards that ensure confidentiality, provide translation and interpretation services, and prevent
EEI data from being shared with law enforcement or immigration enforcement. Families will not open their
doors if the information they share could be used to harm them. Clear limits on data-sharing—communicated
in plain language at the moment of contact—are essential. Transparency in how long data will be retained,
how it will be stored, and when it will be destroyed must be part of the EEI process.
LULAC also urges CDC to integrate community health workers—promotores de salud—into EEI field teams.
These individuals hold trust that government agencies cannot manufacture. According to a national survey
published in Preventing Chronic Disease, public engagement and participation increase by 26 percent when
community health workers are involved.⁷ They are the translators of more than language —they are translators
of trust.
The CDC emphasizes flexibility. LULAC asks for safeguards. The CDC emphasizes speed. LULAC asks for
consent. The CDC emphasizes necessity. LULAC asks for dignity.
For over 96 years, LULAC has defended the rights of Latino and immigrant communities against
discrimination, governmental overreach, and the misuse of personal information. The organization was
founded during a period when government systems were used to track, target, and intimidate Mexican
Americans and migrant families. Across generations, we have learned that civil rights protections are not
obstacles to public health—they are the foundation of cooperation. When institutions respect dignity,
communities respond with trust. When they do not, communities retreat into silence.
In that history, LULAC has only ever asked one thing of government: Do not ask our people for trust if you
are unwilling to guarantee their protection.

1150 18th Street, NW, Suite 275 • Washington, DC 20036 • (202) 833-6130 • FAX (202) 833-6135 • www.LULAC.org

League of United Latin American Citizens
CDC’s mission and our mission are not at odds. We both seek to protect lives. The EEI clearance should
reflect that shared purpose by ensuring that urgency never eclipses civil rights. We stand ready to work with
CDC to identify solutions that protect public health without compromising the privacy, dignity, or civil rights
of the communities we serve. Should you have any further questions, please contact our National Director of
Research and Policy, Dr. Ray Serrano, at [email protected].
Respectfully submitted,

Roman Palomares
LULAC National President and Board Chairman

--Works Cited
1. Bernstein, H., Gonzalez, D., Echave, P., & Guelespe, A. Immigrant Families Faced Multiple
Barriers to Safety Net Programs in 2021. Urban Institute (2022).
2. Feiger, L., Kelly, M., Elliot, V., & Gilles, M. ICE Is Getting Unprecedented Access to
Medicaid Data. Wired (2025).
3. McLaughlin, R., & Alfaro-Velcamp, T. The Vulnerability of Immigrants in Research:
Enhancing Protocol Development and Ethics Review. Springer (2015).
4. Neuman, M., Vallejo, A., Matsuo, K., & Roman, L. Health Literacy Interventions Among
Spanish Speaking Populations in the United States (2023).
5. Hamilton, T.G. The Healthy Immigrant Effect: In Search of a Better Native-Born Comparison
Group. Social Science Research (2015).
6. Young, M.T., & Madrigal, D.S. Documenting Legal Status: A Systematic Review of
Measurement in Health Research. Public Health Reviews (2017).
7. Rohan, E., Townsend, J., Torres, A., Thompson, H., Holman, D., Reza, A., et al. Public
Understanding of and Engagement With Community Health Workers and Promotores de
Salud. Preventing Chronic Disease (2025).

1150 18th Street, NW, Suite 275 • Washington, DC 20036 • (202) 833-6130 • FAX (202) 833-6135 • www.LULAC.org