Stanford Journal

of
Public Health
An Undergraduate Publication

Volume 1, Issue 1, Spring 2011

http://sjph.stanford.edu
 Erin Duralde editor-in-chief
Rebecca Johnson editor-in-chief
Ming Jia managing director
Crystal Lee marketing
Ben Lauing marketing
Mailyn Fidler outreach
Danielle DeCosta outreach
Gianni Sun finance
Emily Cheng web director
Jovel Queirolo layout director

research review
Daniel Bui
Jennifer Jenks
Andrea Yung
Jason Bishai

policy practice investigation

Jessie Holtzman Teresa Liu Ben Hoffman
Emma Makoba Katie Nelson Autumn Albers

layout
Laura Potter
Caroline Jung
Kasey Kissick

writers
Chloe Stier
Rachel Sasaki Seeman
Nairi Strauch
Helena Scutt
Katy Storch

with support from

The Bingham Fund for Student Innovation in Human Biology
ASSU Publications Board
Haas Center for Public Service

Cover photo courtesy of Kris Cheng Logo courtesy of Kiran Malladi

letter from the editors:
Rebecca Johnson
Erin Duralde
editors-in-chief

Welcome to the inaugural is-

sue of the Stanford Journal of
tween the developed and develop- ing role that genetically modified
ing world. This converged in her mosquitoes may play in stemming
senior thesis project, which investi- the spread of dengue fever. Mean-
Public Health, an undergraduate gates how attributions about men- while, the Practice section explores
publication that seeks to explore tal illness affect support for men- how this knowledge is translated
public health issues in an engag- tal health philanthropic funding. into practice-based approaches to
ing, scholarly forum. On behalf Erin found her lifelong inter- public health; Laura Potter investi-
of the entire staff, we are proud est in medicine blos- gates how social media
to present an issue that highlights som into a greater con- is rapidly transforming
the multidisciplinary nature of cern for public health the development and
public health efforts around the when working at the dissemination of pub-
world; celebrates the successes of Stanford Center on lic health knowledge.
researchers, policymakers, recent Longevity. Her experi- Finally, the Policy sec-
graduates, and students alike; and ence there inspired a tion highlights how
invites readers to consider today’s focus on how the built knowledge is codified
greatest public health challenges. environment impacts JOHNSON to create institutional
The journal was born out of a sim- senior health and well- change; Chloe Stier
ple observation: despite Stanford’s ness. Through her Human Biol- discusses diagnostic testing for
wealth of centers, researchers, and ogy studies, she has pursued a Alzheimer’s Disease and the ethi-
students making an impact on the deeper understanding of such cal implications foreknowledge of
field of public health, there were structural influences on health. the disease has on insurance and
no publications high- We share a passion for delv- employer policy. These pieces,
lighting their efforts ing into the complexity of along with student research sub-
in a way that would public health, but the dif- missions and contributions from
engage both students ferent ways in which we professionals, define the journal.
and public health have explored that pas- These three approaches converge
practitioners. We are sion highlight the multi- to attack public health’s challenges
incredibly indebted faceted nature of the field. in an interconnected manner. We
to our founding team Our inaugural issue hope this issue will lead to a sense
and inaugural jour- DURALDE bears witness to this in- of appreciation for the many cre-
nal staff, as well as our terdisciplinary approach. ative efforts underway to improve
faculty advisers, Dr. Grant Miller, Our journal utilizes three ap- health outcomes. We also hope
Dr. Cathy Heaney, and Amy Lock- proaches to public health: inves- that our readers become contribu-
wood, for helping make our vision tigation, practice, and policy. The tors, our writers become practitio-
for the new publication a reality. Investigation section examines ners, and that reading this journal
Each of us brings our own distinct research methods and strategies will inspire you to launch public
perspective to the topic. Rebecca employed by public health profes- health initiatives of your own.
worked on strategy for the global sionals, demonstrating how the
launch of a life-saving drug; learn- knowledge necessary for action is Thank you for your readership,
ing about international health pol- actually acquired and distilled; in
icy ignited a deep-seated desire to this issue, Jennifer Jenks and Nairi Erin and Rebecca
reduce health care disparities be- Strauch shed light on the promis-

5
letters from the advisors:
W e advisors are delighted to introduce the inaugural issue of the Stanford Journal of Public Health. The
journal is truly a creation of the students, by the students, and for the students. Founded by an enterpris-
ing group of undergraduates, it aims to build a student community focused on public health policy, practice,
and research. First, it seeks to analyze and present important policy challenges facing today’s public health
decision-makers. Second, it will investigate and describe on-the-ground solutions being pursued to im-
prove population health. Third, it establishes a new forum for undergraduates to publish their own research.

Ultimately, the success of the journal will depend on the support and participation of the uni-
versity’s undergraduate body. We urge you to join us in supporting this exciting new student
endeavor, both as readers and as contributors.

Grant Miller, PhD, MPP

Assistant Professor of Medicine; Assistant Professor, by courtesy, of Economics and of Health Research
and Policy and CHP/PCOR Core Faculty Member

I am honored to be among the inaugural advisors for the Stanford Journal of Public Health. In my role at the
Center for Global Health, I develop and support collaborations throughout Stanford and with the communities
in which we operate. The SJPH is an exciting addition to Stanford as it offers a channel to communicate the
ways in which Stanford faculty, staff and students pursue research and offer their service to develop policies and
improve the health and wellbeing of people around the world.

We are excited that the Journal will provide an opportunity for undergraduates to participate
in and learn more about the field of public health. The imagination of the Stanford community
will no doubt be engaged as our peers offer a view into health issues in a manner that is acces-
sible and understandable even for those new to the field. By focusing on three areas – Practice,
Policy and Investigation – the Journal will represent the interconnected and complex approach
to health and inspire readers to get involved.

Amy Lockwood
Deputy Director
Stanford University Center for Global Health

During my years at Stanford, many students have articulated an interest in pursuing studies relevant to the
promotion of the health and well-being of people around the world, particularly those who are underserved
and most vulnerable to threats to health. They have come to my office asking questions about public health:
What exactly is public health? What do public health initiatives and activities look like? How can I, as a Stanford student,
contribute to public health efforts?

The Stanford Journal of Public Health explores the answers to these questions. With its
emphasis on important current issues and controversies in public health policy, research and
practice, this journal will provide a forum for exploring challenges and opportunities in public
health. I invite all members of the Stanford community to savor this inaugural issue. I hope
that it inspires you to further explore your own interests in public health and to contribute to
subsequent issues of this new Stanford journal.

Catherine A. Heaney, PhD, MPH

Associate Professor (Teaching)
Stanford Prevention Research Center
6
contents
Policy
An Inside Look at The Global Disease Detection Operations Center at the CDC..................................................8
Dr. Rohit Chitale

Determining the Public Health Agenda through the Eyes of Professionals............................................................10

Rachel S. Seeman

Planned Parenthood and the Hyde Amendment ..................................................................................................13

Emma Makoba

Immigrants and Barriers to Healthcare in the US and the UK...............................................................................14

Rayden Llano

Predicting Alzheimer’s: The Social and Policy Implications of Early Diagnosis......................................................21

Chloe Stier

Practice
The Formula for Successful Activism: Social Media’s Role in Public Health..........................................................24
Laura Potter

When Numbers Meet Health................................................................................................................................26

Katy Storch

Measles and Polio Eradication: Striving Towards a Post-Infectious Disease Era......................................................28

Jason Bishai and Katie Nelson

Investigation
Preventing Emergence of Infectious Diseases through Surveillance at the Source..................................................31
Autumn Albers

The Dirt on Hand Hygiene Research Projects in Africa.........................................................................................33

Helena Scutt

“It was my Daughter’s Greatest Merit”: Reframing Barriers to Organ Donation in Thailand...................................35
Lucinda Lai

Relation between Home Environment and Pain Frequency for Children with Sickle Cell.....................................39
Catherine Lu

Genetically Modified Mosquitoes May Stop Spread of Dengue Fever....................................................................43

Jennifer Jenks and Nairi Strauch

7
POLICY
An Inside Look at The Global
Disease Detection Operations
Center at the CDC
Dr. Rohit Chitale
T ruth is often stranger than fiction
for the Centers for Disease Control
and Prevention’s (CDC) elite force
of disease detectives. Keeping a
watchful eye on the emergence of
potentially lethal pathogens and
other disease agents is the daily
responsibility of the CDC’s epide-
miologists like me. We explore the
trajectories of various outbreaks,
including anthrax and E.coli O157,
diseases occurring right here at
home in the US, where powerful
disease surveillance systems con-
tinually look for cases of illness.
However, most nations have an in-
ability to rapidly detect and report
disease events, and frequently gov-
ernments are reluctant to do so (like
China was with SARS). So what
happens then?
In Fall 2006, Dr. Ray Arthur es-
tablished the CDC’s Global Dis-
ease Detection Operations Center
(GDDOC), to help the US’ primary
disease control agency be prepared
for emerging global disease threats.
This center is the first of its kind at
CDC, and one of only a few similar
centers globally.
The analysts at the center com-
prise a multi-disciplinary team of
PhD-trained as well as physician
and veterinary epidemiologists.
These broad yet overlapping skill-
sets allow the analysts to see the
world from a human, animal, and
8
population medicine perspective,
and makes for some interesting sci-
entific, multi-disciplinary discus-
sion in an environment focused on
real-world disease detection and
outbreak response.
A Key Function of the GDD
Operations Center: Event-based
Surveillance
The GDDOC uses a method of
“disease event” detection called
‘event-based surveillance’ to con-
stantly look for disease events
around the world. Though the CDC
is concerned with human health,
about 80% of emerging infectious
disease threats arise from animals;
hence, it is crucial to look at animals
and their health as sentinels for hu-
man illness.
The GDDOC uses various sources
to look for disease events, including
Internet-based foreign language
media reports, blogs, and websites
in about 40 languages. It then takes
the source reports – from media,
various CDC expert staff or part-
ners, or sometimes even foreign
physician reports – and verifies the
information. You can’t always be-
lieve what you read in the media or
on a website, or even see on a map.
You have to verify it, and in this
business, it has to be done quickly.
The GDDOC leverages the skills of
CDC’s disease experts in the US and
CDC’s impressive global footprint,
including staff in over 60 countries
and all six World Health Organiza-
tion (WHO) regions worldwide, to
find out what’s really going on in a
country.
Global Health Diplomacy and
Security
The work of the GDDOC is based
on systems and processes devel-
oped at the WHO in Geneva, Swit-
zerland. The International Health
Regulations (IHR), a legal docu-
ment significantly revised in 2005
and signed by 194 countries world-
wide, provides key guiding prin-
ciples for the GDDOC. It sets forth
criteria that countries can use to as-
sess potential or real disease events,
to determine if they are, or could
become, a Public Health Emergency
of International Concern (PHEIC).
This approach introduces the
concept of ‘all hazard’ and context-
specific risk assessment, and main-
ly removes the pathogen-specific
disease reporting mandated by the
IHR since 1969, when the docu-
ment was originally created. The
US Government has been a strong
leader in the implementation of the
IHR; in fact, the GDDOC and its
parent division have been named
the first and presently only WHO
Collaborating Center for Imple-
mentation of IHR National Surveil-
lance and Response Capacity. The
GDDOC and its parent division are
 SJPH: issue 1, volume 1
critically involved in health diplo-
macy and health security, with the
mission of protecting the health of
the citizens of the United States and
the global community. The Division
and CDC’s other international pro-
grams are critical partners in Presi-
dent Obama’s Global Health Initia-
tive (GHI).
Working in the GDDOC pro-
vides a birds-eye view of the CDC
and the various pieces of the US
Government and global partners
that are involved in public health.
In terms of diseases, it surveys the
world for emerging or re-emerging
diseases and in a given day the ana-
lysts discuss several diseases occur-
ring in many countries. In a place
filled with many of the world’s dis-
ease experts, it can be tough to be
a scientist, yet in terms of diseases,
we work with far more breadth
than depth. Nonetheless, my time
in the GDD Operations Center has
been exciting, instructive, and I
think has made a positive, real-time
difference for global public health,
and for science.
Centers for Disease Control and Prevention | with permission
Members of the CDC Global Disease Detection Operations Center monitor disease events
around the world.

Rohit A Chitale is an epidemiologist and one of the first analysts involved in establishing the CDC’s
Global Disease Detection Operations Center. Dr. Chitale received his PhD in Epidemiology from the
Johns Hopkins Bloomberg School of Public Health, his Masters of Public Health from the University
of California, Los Angeles (UCLA), and his BA in Economics from the University of Maryland, College
Park. He holds faculty appointments at the Johns Hopkins Bloomberg School of Public Health and the
Rollins School of Public Health at Emory University. Dr Chitale can be reached at rchitale@cdc.gov.

9
POLICY
Determining the
Public Health Agenda
A Look at the Field through
the Eyes of Professionals
Rachel Sasaki Seeman
Staff Writer
T he focus of public health has
evolved in recent decades from a
community effort to a global en-
deavor. Public health, in its cur-
rent incarnation, has an expanded
focus on not only the health out-
comes at the level of local com-
munities, but on solutions that
transcend national boundaries
and cultural lines, and that take
an interdisciplinary approach.
These varied approaches empha-
size policy solutions, direct treatment,
and preventative work to improve
the quality and efficiency of health
care. Professionals within the field of
public health recognize that achiev-
ing goals requires both monetary and
physical support. This support leads
to an intricate web of public health
that includes countless profession-
als, community health workers, and
volunteers, who treat, analyze, plan,
build, and manage a broad array of
initiatives directed at a common goal.
Amy Lockwood, Jocelyn Kelly
and Dr. Mary Jacobson are three
professionals who take mana-
gerial, preventive, and direct
care approaches respectively
to diminish challenges stand-
10
ing in the way of public welfare.
The Management Perspective
Amy Lockwood has adminis-
trative experience in global public
health and focuses on improving
the efficiency of health care by de-
veloping and implementing context
specific programs. Lockwood, who
“ I really felt like for a long
time that if I couldn’t save
people, then there wasn’t a role
for me in public health, but
there is so much to do.
— Amy Lockwood
Project Healthy Children Director
received her MBA from Stanford,
” is to make the job of individuals in
believes that the future of public
health relies on collaboration with
other fields and acknowledgment
of past mistakes. From an organi-
zational standpoint, as former Ex-
ecutive Director of Project Healthy
Children and Clinton Foundation
Deputy Country Director for India,
Lockwood acknowledges and at-
tempts to resolve the issues faced
on the ground level of public health
on a daily basis. However, she
didn’t always know that people
without medical experience could
contribute to public health: “I re-
ally felt like for a long time that if
I couldn’t save people, [then] there
wasn’t a role for me in public health,
but there is so much to do.” While
working for the Clinton Founda-
tion, Lockwood oversaw health
initiatives within 33 countries. She
recognized patterns between coun-
tries and implemented blanket
solutions, which were adjustable
according to the needs of each loca-
tion. Lockwood bridges the gap be-
tween health care and business to
make care more effective. Her goal
direct care simpler. Both her profes-
sional and educational experiences
have helped her realize the occa-
sional overwhelming complexity
of global health challenges—com-
plexity that requires well-informed,
comprehensive solutions. After
describing the domino effect that
health, poverty, safety, nutrition, ac-
cess to care, and maternal health can
have, Lockwood explained, “All of
these issues exist in one person and
in all of humanity: [public health]
 SJPH: issue 1, volume 1

Jocelyn Kelly | with permission

Jocelyn Kelly is pictured here alongside Harvard Humanitarian Initiative Director Michael VanRooyen as they interview members of the Mai
Mai militia in the Democratic Republic of Congo. The aim of Kelly’s research is to better understand why soliders perpetrate sexual crimes
against women. She hopes to tie together the advocacy and policy aspects of the public health field so that these sexual violence incidents
can be minimized most efficiently. Efficacy is also a concern for Dr. Mary Jacobson at Stanford Medical School in seeing patients; Amy
Lockwood, too, is committed to simplifying caregiving by more effectively fostering a dialogue between health care and business.

affects everything and everyone.”
The Advocacy Perspective
Jocelyn Kelly, Gender-Based
Violence Research Coordinator of
the Harvard Humanitarian Initia-
tive and Harvard MPH graduate,
has devoted her life to reducing
incidents of sexual violence in the
Democratic Republic of Congo,
both by researching the issue and
working on-the-ground in coun-
seling roles. She sees public health
as bridging the gap between the
many layers that separate the
advocates and the policy mak-
ers, through a continued integra-
tion of technology into the field.
Kelly’s work focuses on violence
prevention in the unstable envi-
ronment of the DRC, and the solu-
tions she proposes, rather than be-
ing broad and general, are tailored
for that specific environment. In
searching for a remedy to prevent
further violence against women,
Kelly investigated “the root causes
of the violence through gather-
ing a wide variety of experiences
and opinions from perpetrators,
bystanders and victims alike.”
Bi-annual visits to the DRC allow
Kelly to recognize that the issues
she combats in the DRC “illuminate
all of the different facets of public
health.” She develops counseling
programs to target the social causes
of violence against women, setting
a precedent for initiatives with a
dual-pronged approach that en-
compasses both prevention efforts
and responsive strategies. Her work
illustrates the importance of pub-
lic health solutions that acknowl-
edge and address the multi-faceted
complexity of health challenges.
The Clinical Perspective
In addition to policymakers,
managers, and researchers, cli-
nicians play a vital role in pub-

11
POLICY
lic health efforts. Dr. Mary Ja-
cobson is one such individual.
Dr. Jacobson focuses on counsel-
ing patients to ensure that both the
patient and the issue are treated.
She believes that the improvement
of public health through direct care
relies on the rationality of insur-
ance companies and the unity of
doctors in promoting a legislative
“ Public health bridges the
gap between the many lay-
ers that separate the advocates
and the policy makers.
— Jocelyn Kelly
Harvard Humanitarian Initiative
” help prevent its further spread. Joc-
agendathat facilitates rather than
impedes direct care. She recognizes
that public health focuses on im-
proving outcomes for groups of in-
dividuals, while she as a healthcare
practitioner focuses on individual
patients. “[I feel] pressured to see
patients within a certain amount
of time,” says Jacobson, reflecting
on some of the challenges that she
faces as a result of the monetarily
pressured field of public health.
She feels that she must “direct care
to the problem instead of the pa-
“ [Doctors] feel pressured to
tient...because of time constraints.”
Dr. Jacobson sees this challenge
stemming from decisions made
by insurance companies that place
constraints on the amount of time
doctors can allocate to caring for
their patients. As a doctor, she be-
lieves that an increased focus on
preventive treatment and a uni-
References
Jacobson, MD, M. T. (2011, April 4). Assistant Residency Director, Course Director, Stanford University School of Medicine. Interview.
Kelly, MPH, J. (2011, March 18). Gender-Based Violence Research Coordinator, Harvard Humanitarian Initiative. Interview.
Lockwood, A. (2011, March 29). Deputy Director for Global Health, Stanford University Center for Global Health. Interview.
12
fied effort of physicians to push
the health agenda in this direction,
rather than insurance companies
driving the agenda for monetary
reasons, will create positive change
to the field of public health overall.
Challenges of Public Health
Challenges abound in the ever-
evolving field of public health. The
complex, interconnected web of
public health means its challenges
are equally complex and intercon-
nected. Amy Lockwood became so
frustrated that people in Africa were
dying from the preventable disease
of HIV/AIDS that she wanted to
become part of the driving force to
elyn Kelly expressed her concern
on the lack of collaboration within
the field in the past: “[it is impor-
tant] to decrease the many layers
that separate the advocates and the
policy makers... [in order to] make
the link more direct so as to combat
problems more efficiently.” Kelly
believes that the responsibility of
a doctor, a researcher, or a volun-
teer serving a community in which
direct care to the problem
instead of the patient because
of time constraints placed upon
caregiving by the insurance
companies.
— Dr. Mary Jacobson
”
Stanford Medical School
some of the individuals lack a polit-
ical voice is to, “bullhorn the voices
of the community to the UN, to
policy makers...” Creating a stron-
ger connection among the many
professionals within the field is cru-
cial in the progress of public health.
Moving Forward: An
Interdisciplinary Effort
Public health is defined by its
diversity of perspectives and ap-
proaches, perspectives that some-
times clash but that reveal the
complexity of this truly global
endeavor. Amy Lockwood stated,
“public health includes every is-
sue in some form, and that is why
it is a global issue.” In the future,
Lockwood believes that public
health must address and share the
mistakes that have been made in
order to progress. Dr. Mary Jacob-
son expressed her opinion that the
positive future progress of public
health relies on the move toward
“more preventive medicine rather
than more reactionary medicine.”
The future of public health—a fu-
ture in which the field learns from
its mistakes and comes together
to collaborate on multi-faceted
solutions—is rife with complex
challenges that need addressing.
Lockwood, Kelly, Jacobson, and
others have come to embrace this
complexity rather than becoming
daunted by it. Public health is de-
fined by the tireless work of indi-
viduals who recognize that health
is a universal human right to
which every individual is entitled.
 SJPH: issue 1, volume 1

Planned Parenthood and

the Hyde Amendment
Information Beyond the Headlines
Emma Makoba
policy editor

Recently, Planned Parenthood made the national headlines when its budget came under scrutiny and
Republican legislators, including Speaker of the House, John Boehner, and House Majority Leader, Eric Cantor,
sought to eliminate federal funding for the organization. The rhetoric used to justify this budget decision
contained statements that could mislead those without a deeper knowledge of the organization’s funding
structure and the specific guidelines set forth by the federal government about what government funding can
and cannot be used for. Below is a list of myths circulating about the organization and its funding, contrasted
with facts about the reality behind media statements made by legislators and other stakeholders in the issue.

Myth: When funding Planned Par-
enthood, the government is supporting
funding for abortions.
Fact: No federal dollars are spent
to fund abortions. Because of the
Hyde Amendment, a rider an-
nually attached to various ap-
propriations bills, there is abso-
lutely no federal funding that
can go to abortions. Thus, any
abortion-related activities pro-
vided by Planned Parenthood
must be funded by private dona-
tions or other non-federal sources.
Myth: Abortions represent 90%
of services provided by Planned
Parenthood.
Fact: Since 1970 Planned Parent-
hood has received federal fund-
ing under Title X of the Family
Planning Services and Population
Research Act. Planned Parent-
hood offers contraceptives, STI/
STD testing and treatment, cancer
screening and prevention, abor-
tion procedures, and other servic-
es including pregnancy tests and
adoption referrals. The non-profit
organization received approxi-
mately $360 million in 2009 from
the federal government, while the
remaining funding comes from
private donors. Seventy percent
of the budget for affiliate medical
services goes to providing con-
traception and STI/STD testing
and treatment. Sixteen percent is
devoted to cancer screening and
prevention. Eleven percent goes
to other health services including
pregnancy tests and adoption re-
ferral. Despite Congressman Jon
Kyl’s statement made on the sen-
ate floor stating that abortion ser-
vices are “well over 90 percent of
what Planned Parenthood does, in
actuality” only three percent of the
budget goes to abortion services.
Myth: Planned Parenthood’s funding
was not affected in any way by the leg-
islative controversy.
Fact: The disagreements between
Republicans and Democrats over
this year’s budget to avoid a gov-
ernment shutdown, where Con-
gress failed to enact a federal
budget under a given timeframe,
were largely over policy provi-
sions regarding abortion and en-
vironmental regulations. One of
the many riders included by Re-
publicans was a provision that
sought to discontinue funding
to Planned Parenthood and re-
direct the money instead to state
health departments. This provi-
sion was formed under the prem-
ise that federal funding provided
to Planned Parenthood was in
fact supporting abortions. (How-
ever, as mentioned previous-
ly, due to the Hyde Amendment,
this cannot occur as it is illegal.)
The rider proposed by Republi-
cans to defund Planned Parent-
hood was removed during a com-
promise made between Democrats
and Republicans in order to avoid
a government shutdown. Instead,
members of congress agreed to
vote later on a separate bill to de-
cide whether or not to defund the
organization. However, the feder-
al spending bill reduced funding
for the non-profit by $17 million.

13
POLICY
Immigrants and Barriers to Healthcare
Comparing Policies in the United States and
the United Kingdom
Rayden Llano
Stanford University, Class of 2010
W hile unprecedented levels of
immigration around the world un-
derscore the growing importance
of immigrant health issues, immi-
grants continue to face substan-
tial challenges in accessing care
that often negatively impact their
health. The degree to which immi-
grants experience barriers in access
to care hinges on the structure and
organization of their host country’s
healthcare system. Given the fun-
damental differences between the
American and British healthcare
systems, this paper assesses the na-
ture and extent to which immigrants
face barriers to healthcare in the US
and the UK as well as the degree to
which each country’s health system
structure allows for improvements
in immigrant healthcare provision.
A comprehensive analysis showed
that barriers to insurance coverage in
the US are substantial and vary signif-
icantly across states as a result of the
“bewildering complex” of insurance
schemes. This feature of the US sys-
tem makes it difficult to implement re-
forms uniformly at the national level.
Meanwhile, there are fewer ac-
cess barriers in Britain for immi-
grants entitled to free care under
the National Health Service as a re-
sult of its more centralized univer-
sal structure that is free at the point
14
of service. While few free clinics
and safety nets exist in Britain for
illegal immigrants not entitled to
free NHS care and although these
restrictions appear to be increas-
ing, the British healthcare system is
in principle better positioned and
structured to reduce immigrants’
barriers to care if it is able to find the
political will to implement much
needed immigrant health reforms.
While immigrants shoulder a dis-
proportionate burden in accessing
healthcare, the political will neces-
sary to adequately address the ac-
cess barriers faced by immigrants
is often lacking. As the levels of im-
migration to countries like the US
and the UK continue to increase
exponentially, however, immigrant
health issues are becoming increas-
ingly difficult to ignore. During
the 1990s, between 11 million and
14 million immigrants entered the
US, and current projections suggest
that almost one in five Americans
will be a foreign-born immigrant
by 2050.1,2 Similarly in Britain, im-
migration accounted for over half
the population increase between
1991 and 2001, and the Office for
National Statistics projects that
immigration will account for 45
percent of population growth be-
tween 2008 and 2033.3 coverage on the same basis as oth-
Against this backdrop, it is crucial
to understand the nature of the bar-
riers to care faced by immigrants
and comparatively assessing them
across countries can highlight fea-
sible approaches to reform. To this
end, this paper assesses the nature
and extent to which immigrants
face barriers to healthcare in the US
and the UK as well as the degree to
which each country’s health system
structure allows for improvements
in immigrant healthcare provision.
Immigrant Status and Eligibility
for Healthcare Coverage in the US
Immigrants with the means to
pay for commercial insurance are
free to do so in the US regardless of
their immigration status. In 2003,
32 percent of immigrants living in
the US for less than six years and 41
percent of those living in the US for
over six years had employer-spon-
sored health insurance.4 However,
the eligibility of low-income immi-
grants for public coverage depends
on immigration status and has fluc-
tuated over the years and across
states. On the whole, between
58 and 65 percent of noncitizens
lacked health insurance in 2003 ver-
sus 28 percent of native US citizens.4
Before 1996, low-income legal
immigrants qualified for Medicaid
er eligible low-income American

citizens. But the passage of the Per-
sonal Responsibility and Work Op-
portunity and Reconciliation Act in
1996 (PRWORA) greatly restricted
immigrants’ access to Medicaid as
well as many other public benefits.5
In effect, legal immigrants arriving
in the US after August 22, 1996, be-
came ineligible for Medicaid and
SCHIP during the first five years of
their US residency, though in 2009,
the Children’s Health Insurance
Program Reauthorization Act gave
states the option to provide feder-
ally-funded Medicaid and SCHIP
coverage to legal immigrant chil-
dren and pregnant women regard-
less of their length of US residency.6
In stark contrast, undocumented
and certain “lawfully present” im-
migrants remain ineligible for these
benefits regardless of their length
of residency in the US while at the
other end of the spectrum refugees
are immediately eligible for Med-
icaid coverage in all states on the
same basis as American citizens.4
Nevertheless, all of the aforemen-
tioned immigrant groups are eli-
gible for Emergency Medicaid if
they meet the necessary financial
and categorical requirements.7
In response to the decline in
Medicaid coverage of immigrants
precipitated by PRWORA, many
states increased public coverage of
these groups through other means,
though these efforts vary greatly by
state. By 2004, 23 states used state
funds to extend coverage to some
or all immigrants who became in-
eligible for federally-funded Med-
icaid and SCHIP.4 California and
New York, for instance, provide
the same or very similar services
as Medicaid or SCHIP to all quali-
fied immigrants, including “law-
fully present” immigrants known
as PRUCOLs.4 Some states, such as
Arkansas and Michigan, do not of-
fer state-funded coverage for immi-
SJPH: issue 1, volume 1
grants, but they do provide SCHIP-
funded prenatal care to pregnant
women regardless of immigration
status.4 Meanwhile, other states,
including Arizona, Colorado, and
Georgia, have passed legislation
making it even harder for immi-
grants to attain coverage.8 Naturally,
states’ varied responses to the 1996
welfare reform law have resulted in
great differences in public coverage
of low-income immigrant groups.
In fact, foreign-born children in
Florida, Illinois, and Texas were 7
times more likely to lack health in-
surance than children in New York.7
In an attempt to increase rates
of insurance coverage among legal
immigrants, the 2010 Patient Pro-
“ The bewildering com-
plex of service and in-
surance inequalties that exist
in the US makes it much more
difficult to address the chal-
lenges faced by immigrants
in accessing care as compared
to Britain’s more centralized
and coordinated healthcare
system.
” range from a low of 50 percent in
tection and Affordable Care Act
(PPCA) will provide eligible legal
immigrants with premium credits
to purchase health insurance plans
through the state-based health in-
surance exchanges beginning in
2014.9 Unfortunately, the PPCA
does not remove the 5-year resi-
dency requirement to qualify for
Medicaid and SCHIP, thereby per-
petuating the perplexing variation
of coverage eligibility across states.
Moreover, the new health law also
prohibits undocumented immi-
grants from even purchasing pri-
vate insurance through the health
insurance exchanges, further con-
tributing to the already substantial
barriers faced by immigrants in ob-
taining health insurance coverage.9
Coverage and Access to Care in the US
While health insurance cover-
age is not equivalent to access,
many research studies suggest that
health insurance is a “major deter-
minant to access to health care for
immigrants”.10,11,12 Insurance cov-
erage promotes financial access to
care, connects immigrants with a
regular source of care, and facili-
tates use of services.13 Given that
immigrants are much less likely to
be insured than native US citizens,
it follows then that they are much
less likely to have a regular source
of care, doctor visits, and preven-
tive health services.4 In a nation-
ally representative sample, Ku &
Sheetal (2001) found that 37.4 per-
cent of noncitizen adults (below
200% FPL) did not have a usual
source of care in 1997 as compared
to 19 percent of native citizens.12
These rates are even higher
among undocumented immigrants.
A study of undocumented migrants
in Texas and California found that
rates of no doctor visits in a year
Fresno to a high of 73 percent in
Los Angeles.14 Consistent with
these findings, annual per capita
expenses for healthcare were 86
percent lower for uninsured im-
migrant children than for their un-
insured US-born counterparts.15
Even immigrants with Medic-
aid or state-funded public insur-
ance are often “medically disen-
franchised.” In New Jersey, for
instance, few specialists are willing
to see Medicaid patients because
Medicaid fees for physicians are
about half the national rate; this, in
turn, makes it extremely difficult
for immigrants with Medicaid to
access subspecialty care.16 More-
over, many state-funded insurance
coverage schemes, such as Wash-
15
POLICY
ington State’s Basic Health Pro-
gram, are often “significantly more
limited than Medicaid or SCHIP”
and have rules that can limit ac-
cess, such as premiums and cost-
sharing that many low-income
immigrants cannot afford to pay.4
Nevertheless, varying levels of
access are still possible even for
uninsured immigrants through
community clinics and federally
qualified health centers (FQHCs).
In fact, community clinics and
hospital outpatient departments
are “the most common source of
ambulatory care for immigrants”;
38.5 percent of noncitizens report
them as their usual source of care.12
FQHCs, in particular, offer many
underserved immigrants a vast
array of health services, includ-
ing general medicine and preven-
tive dentistry, ob-gyn, diagnostic
“ The ability of illegal
laboratory services, family plan-
ning, and chronic disease and case
management.16 According to the
Kaiser Family Foundation, in 2007,
257 of the 1,057 federally-funded
FQHCs in the US were located in
four states with some of the highest
concentrations of immigrants (Flor-
ida, New York, Texas, and Califor-
nia).17 Despite their existence, how-
ever, many immigrants still face
barriers in accessing them, such
as lack of knowledge of these ser-
vices, which will be discussed later.
Immigrant Status and Entitlement
to NHS Care in Britain
Unlike the insurance-based cov-
erage scheme in the US, the Brit-
ish National Health Service is a
universal tax-based system that
provides its beneficiaries with com-
prehensive health services that
are largely free at the point of ser-
vice.18 As is the case in the US, en-
titlement to NHS care is based on
immigration status. Primary Care
Trusts (PCTs) are tasked with de-
termining whether the patient is
16
ordinarily resident in the UK, and
if not, whether he or she is eligible
for NHS care under the Overseas
Visitor Regulations.19 Among the
immigrants entitled to full NHS
treatment are those who have
been “living legally in the UK for
12 months,” permanent residents,
students in the UK for more than
6 months, individuals from coun-
tries with a reciprocal agreement,
refugees, and asylum seekers.20
Asylum seekers, however, are
eligible for full NHS treatment only
if they have submitted an applica-
tion to remain in the UK or have
been detained by the immigration
authorities.20 If their application for
asylum is denied, their eligibility for
full NHS care is rescinded. Nev-
immigrants to access nonurgent
primary care depends
on the GP’s willingness to
ask difficult and sensitive
questions or require evidence of
immigration status.
ertheless, in a written statement to
the House of Commons on July 20,
2009, Parliamentary Under-Secre-
tary of Health Ann Keen proposed
that full NHS care should continue
to be provided to failed asylum
seekers “who are being supported
by the UK Border Agency because
they would otherwise be desti-
tute, have children and/or because
it is impossible to return home
through no fault of their own”.21
With regards to undocument-
ed immigrants, the term “illegal
migrant” was previously not in-
cluded in any of the official NHS
documents.22 Prior to 2004, people
who had been living in Britain for
12 months or who had come with
“the intention of permanent resi-
dence” were exempt from charges
for NHS care.22 These loosely regu-
lated requirements combined with
an absence of systematic internal
checks on residential status made
“healthcare largely accessible to
undocumented migrants”.22 How-
ever, revisions to NHS regulations
in April 2004 required proof of legal
residence status in the UK and lev-
ied charges for “overseas visitors,”
which greatly curtailed access for
undocumented immigrants and
will be discussed in the next section.
Currently, those ineligible for full
NHS care, including the estimated
400,000 illegal immigrants in the
UK, are still provided with emer-
gency care as in the US in addition
to treatment of sexually transmit-
ted infections (except HIV), treat-
ment of illnesses that threaten
public health (e.g. tuberculosis, ma-
laria, meningitis), family planning,
and compulsory psychiatric treat-
ment.20 It is worth noting, however,
that illegal immigrants may still
have access to GP services (albeit
inconsistent at best) given that GPs
do not believe it is their role to
” “police” the healthcare system.23
NHS Entitlement
and Access to Care
In an interview with a GP work-
ing in London, Dr. Katy Haynes
said, “Legal immigrants should not
face barriers in accessing care as the
rules are now clear, but in practice,
this is not always the case.”24 A free
clinic in East London run by a hu-
manitarian aid organization called
Médecins du Monde UK found that
over 40 percent of their immigrant
patients were unable to access care
to which they were entitled.25 Ac-
cording to the clinic, which provides
temporary healthcare to migrants,
their patients had been living in the
UK for an average of three years
before coming to the clinic to see a
doctor or get help accessing NHS
care to which they are entitled.25
Moreover, even though the
 SJPH: issue 1, volume 1
230,000 refugees living in the UK
are entitled to full NHS care free of
charge, some studies suggest that
GPs are “confused” about this. In
Islington, a study found that 38
percent of refugees had problems
registering with a GP.26 In addition,
even though a 1995 Home Study
found that 70 percent of refugees
had been living in their current
home for over a year, many refu-
gees are often added to a GP’s list
on a temporary rather than perma-
nent basis.26 Temporary status, in
turn, means that they remain on the
GP’s list for less than three months,
which removes the GP’s incentive
to offer patient screening checks,
immunizations and cervical screen-
ing.22 However, it appears that such
barriers in access to care for refu-
gees and asylum seekers may vary
by region given that most asylum
seekers arriving in Glasgow re-
ceived letters from the health board
explaining how and where to reg-
ister with a GP.27 In fact, at one site,
they even had an “Asylum Sup-
port Nurse” who was employed
specifically to help asylum seekers
with the registration process, lead-
ing most patients to report “feel-
ing welcomed and cared for”.27 Reed Saxon| with permission
Overall, compared to the US Patients receive dental care assembly-line style at a large mobile health care clinic in
Inglewood, California
where alarming rates of legal im-
migrants do not even have a regu- hood cold and flu remedies”.27 NHS treatment. However, the new
lar source of care, most studies on However, there are greater barri- regulations have made access to
legal immigrants’ access to NHS ers in accessing care for UK immi- primary care harder and essentially
resources point to significantly less grants not entitled to full NHS care, impossible for specialist care. While
insurmountable barriers to care. such as undocumented migrants GPs are required to provide imme-
Legal immigrants in the UK mainly and failed asylum seekers. While diately necessary care, the ability
report difficulty in “getting timely they are in principle able to access of illegal immigrants to access non-
appointments with their doctor,” care through the private health urgent primary care “depends on
accessing dental care, and seeing insurance market, most undocu- the GP’s willingness to ask difficult
the same GP.27,28 Access to over- mented immigrants do not have and sensitive questions or require
the-counter medication was also the means to do so.22 Consequently, evidence of immigration status”.19,22
oftentimes cited as a barrier since the main care to which they have According to Dr. Katy Haynes,24
prescription drugs are covered but access and to which they are en- there are strict requirements to
not over-the-counter drugs. Some titled is emergency care. Prior to be met before people get regis-
people in the UK perceive this as a the 2004 regulations, it was fairly tered for an NHS number, such
“significant cost for families where easy for undocumented migrants to as proving residency and pro-
young children often needed child- “slip through the net” and get free viding home office documents:

17
POLICY
“Our front desk staff have (re- available in 10 languages in addi- Immigrants in the UK face simi-
luctantly) become experts in this as tion to English, and asks whether lar language barriers in accessing
the need to protect NHS resources families would like to request an in- care. In fact, in London alone, over
for those entitled to them has be- terpreter.4 These efforts are improv- 300 languages are spoken, and only
come more urgent. Some GPs may ing access to care for immigrants 14 percent of Bengalis, 29 percent
be less stringent about this than in the US, but much remains to be of Gujeratis, 26 percent of Pun-
we are but registrations all have to done. Studies still show that Span- jabis, and 41 percent of Chinese
get through the Primary Care Trust ish-speaking Hispanics were more report a “survival level of com-
Registration Department and will likely than non-Hispanics to fail to petence in the use of English”.32
be bounced back if the correct doc- complete the Medicaid application That said, asylum seekers living in
uments have not been provided.” and miss deadlines for submitting Glasgow reported that the avail-
There is unfortunately no practical necessary documents.4 In addi- ability of interpreters “appeared
way of quantitatively determining tion, 43 percent of Spanish-speak- to be well organized and fairly
how much access to primary care ing Hispanics had communication stable,” highlighting the potential
illegal immigrants have since the of the British healthcare system
NHS does not consistently check res-
idential status for patients already
“ Many immigrants in the
US and Britain have limited
to mitigate access problems as-
sociated with language barriers.27
in the system. However, special- English proficiency, which In both countries, immigrants’
ist care is not provided without an represents yet another significant lack of knowledge of the health
NHS number, effectively curtailing obstacle in accessing care services available to them and un-
any access by illegal immigrants.24 familiarity with the healthcare sys-
because doctors’ ability to under-
tem also contribute to their poor
Other Barriers in Accessing Care
stand their patients’ needs is patterns of access.30 In addition to
Many immigrants in the US
and Britain have limited English
often compromised.
” illegal immigrants’ fear of immi-
gration authorities, US immigrants
proficiency, which represents yet problems with doctors versus in general are often “confused” by
another significant obstacle in ac- 16 percent of whites, and non-Eng- state and federal eligibility crite-
cessing care. This is because, in lish speakers had a harder time un- ria, and parents often do not seek
the absence of an interpreter, doc- derstanding doctor instructions.31 healthcare for their US-born chil-
tors’ ability to understand their pa-
tients’ needs is often compromised,
resulting in decreased symptom
reporting by patients, fewer refer-
rals to needed specialist care, and
prescription of inappropriate medi-
cations.28,29 For this reason, various
studies have found that language
problems are cited by Hispanic par-
ents in the US as the “single great-
est barrier to healthcare” for their
children ahead of other barriers
such as no medical insurance and
difficulty paying medical bills.12,30
Recognizing the challenges faced
by non-English speakers in access-
ing care, many states are trying to
mitigate the problem through in-
creased availability of interpreting
and translation services. Minneso-
ta, for instance, has made its state
application for healthcare programs Britannica Encyclopedia | with permission

18

dren because they do not believe
they qualify for services.33 Simi-
larly, in Britain, immigrants enti-
tled to free NHS care were largely
unaware of health promotion and
health screening programs.27 In
fact, immigrants, especially South
Asians, have significantly unde-
rused the two existing UK can-
cer screening programs for breast
and cervical cancer.32 These trends
are further supported by Rand-
hawa & Owens’ (2004) findings
that South Asians in Luton expe-
rienced access to appropriate can-
cer specialist services at a “rela-
tively late stage of the illness” and
that awareness of these services
was “concerningly low”.34 Rela-
tive to the convoluted US health-
care system, however, Britain’s
SJPH: issue 1, volume 1
more centralized universal struc- increasing “as the need to protect
ture makes it easier to attempt NHS resources for those entitled to
to make immigrants more aware them has become more urgent”.24
of the services available to them. Consequently, while the British
In retrospect, immigrants in both healthcare system is in principle
the US and the UK face dispro- better positioned and structured
portionate challenges in accessing to reduce immigrants’ barriers to
care. Nevertheless, the “bewilder- care, it remains to be seen how the
ing complex of service and insur- US and the UK will continue to
ance inequalities” that exist in the grapple with the health needs of
US makes it much more difficult their diverse immigrant popula-
to address the challenges faced by tions against a backdrop of increas-
immigrants in accessing care as ingly scarce healthcare resources.
compared to Britain’s more central-
ized and coordinated healthcare
system. 35 It is worth noting, how-
ever, that few free clinics and safety
nets exist for illegal immigrants
and failed asylum seekers not en-
titled to free NHS care in Britain,
and these restrictions appear to be

Rayden Llano, of Miami, Florida, graduated in 2010 with a degree in Human Biology. While interning at
the Office of the Surgeon General in 2009 through the Bing Stanford in Washington Program, he helped
implement national policy legislation to assist vulnerable populations in accessing essential health
services during major disasters. He has also worked on health policy issues internationally in France and
Spain through internships funded by Stanford and the National Institutes of Health. Currently on a Luce
Scholarship in Asia, Rayden has been doing research on how lessons from Japan’s universal healthcare
system can be effectively shared with other countries on the path toward universal coverage.

References
1. Fix, M, Zimmerman, W, & Passel, J. (2001). Integration of Immigrant Families in the United States, Urban Institute, July 2001,7-9.
2. Passel, J, & Cohn, D. (2008). U.S. Population Projections: 2005-2050. Washington, DC, Pew Research Center.
3. Office for National Statistics, National population projections, 2008-based, October 2009.
4. Fremstad, S, & Cox, L. (2004). Covering New Americans: A Review of Federal and State Policies Related to Immigrants’ Eligibility and Ac-
cess to Publicly Funded Health Insurance. Washington DC, Kaiser Commission on Medicaid and the Uninsured.
5. Personal Responsibility and Work Opportunity Reconciliation Act of 1996, Pub L No. 104-193, 110 Stat 2105.
6. New Option for States to Provide Federally Funded Medicaid and CHIP Coverage to Additional Immigrant Children and Pregnant Women.
(2009). Washington DC, Kaiser Commission on Medicaid and the Uninsured.
7. Yu, S, Huang, Z, & Kogan, M. (2008). State-level health care access and use among children in US immigrant families. American Journal
of Public Health, 98(11):1996-2003.
8. Okie, S. (2007). Immigrants and Health Care—At the Intersection of Two Broken Systems. New England Journal of Medicine, 357(6):525-
529.
9. Patient Protection and Affordable Care Act of 2010, Pub L No. 111-148, 124 Stat. 119.
10. Guendelman, S, Schauffler, H, & Pearl, M. (2001). Unfriendly Shores: How Immigrant Children Fare in the US Health System. Health
Affairs, 20(1):257-266.
11. Nandi, A, Galea, S, Lopez, G, Nandi, V, Strongarone, S, & Ompad, D. (2008). Access to and use of health services among undocumented
Mexican immigrants in a US urban area. American Journal of Public Health, 98(11): 2011-20.
12. Ku, L., & Sheetal, M. (2001). Left Out: Immigrants’ Access to Health Care and Insurance. Health Affairs, 20(1):247-256.
13. Edmunds, H, & Coye, M, eds. (1998). America’s children: health insurance and access to care. Washington, DC: National Academy Press.
14. Berk, M, Schur, C, Chavez, L, & Frankel, M. (2000). Health Care Use Among Undocumented Latino Immigrants. Health Affairs, 19(4):51-
64.
15. Mohanty, S, Woolhandler, S, Himmelstein, D, Pati, S, Carrasquillo, O, & Bor, B. (2005). Health care expenditures of immigrants in the
United States: a nationally representative analysis. American Journal of Public Health, 95:1431-8.
16. Light, D, Portes, A, & Fernandez-Kelly, P. (2009). Institutional Ambivalence and Permanently Failing Health Care: Access by Immigrants

19
POLICY
and the Categorically Unequal in the Nation and New Jersey. April 2009.
17. Kaiser Family Foundation. Number of Federally-Funded Federally Qualified Health Centers, 2007. Retrieved from <http://www.state-
healthfacts.org:/comparemaptable.jsp?typ=1&ind=424&cat=8&sub=99&sortc=1&o=a>
18. Boyle, Sean. (2008). The UK Health Care System. Descriptions of Health Care Systems. New York: The Commonwealth Fund. February
2008.
19. Newdick, C. (2009). Treating failed asylum seekers in the NHS. British Medical Journal, 338:1155-1156.
20. Pollard, A, & Savulescu J. (2004). Eligibility of overseas visitors and people of uncertain residential status for NHS treatment. British
Medical Journal, 329:346-9.
21. Keen, Ann (2009). Written Statement to the House of Commons on “NHS: Non-UK Residents”. 20 July 2009. Retrieved from <http://
www.publications.parliament.uk/pa/ld200809/ldhansrd/text/90720-wms0003.htm> Accessed 23 November 2009.
22. Scott, P. (2004). Undocumented Migrants In Germany And Britain: The Human “Rights” And “Wrongs” Regarding Access to Health
Care. Electronic Journal of Sociology, (1198 3655), Retrieved from <http://www.sociology.org/content/2004/tier2/scott.html>
23. Kmietowicz, Z. (2004). GPs to check on patients’ residency status to stop ‘health tourism’. British Medical Journal, 328:1217.
24. Haynes, Katy. British General Practitioner. Personal Interview. December 2009.
25. Moszynski, P. (2008). Excluding immigrants from primary care brings no savings to NHS, charity claims. British Medical Journal,
336:1095. 
26. Jones, D, & Gill, P. (1998). Refugees and primary care: tackling the inequalities. British Medical Journal, 317:1444-6.
27. O’Donnell, C, Higgins, M, Chauhan, R, & Mullen, K. (2007). “They think we’re OK
and we know we’re not”. A qualitative study of asylum seekers’ access, knowledge and views to health care in the UK. BMC Health Ser-
vices Research, 7(75).
28. Bhatia, R, & Wallace, P. (2007). Experiences of refugees and asylum seekers in general practice: a qualitative study. BMC Family Prac-
tice, 8(48).
29. Burnett A, & Peel M. (2001). Asylum seekers and refugees in Britain: What brings asylum seekers to the United Kingdom? British Medi-
cal Journal, 322:485-488.
30. Flores, G, Abreu, M, Olivar, M, & Kastner, B (1998). Access Barriers to Health Care for Latino Children. Archives of Pediatrics & Adoles-
cent Medicine, 152:1119-1125.
31. Collins, K, Hughes, D, Doty, M, Ives, B, Edwards, J, & Tenney, K (2002). Diverse Communities, Common Concerns: Assessing Health
Care Quality for Minority Americans. New York: The Commonwealth Fund, March 2002.
32. Szczepura, A. (2005). Access to health care for ethnic minority populations. Postgraduate Medical Journal, 81:141-147.
33. Kullgren, J. (2003). Restrictions on Undocumented Immigrants’ Access to Health
Services: The Public Health Implications of Welfare Reform. American Journal
of Public Health, 93(10):1630-1633.
34. Randhawa, G, & Owens, A. (2004). The meanings of cancer and perceptions of
cancer services among South Asians in Luton, UK. British Journal of Cancer, 91: 62-68.
35. Light, D, Portes, A, & Fernandez-Kelly, P. (2009b). Categorical Inequalities,
Institutional Ambivalence, and Permanently Failing Institutions: Immigrants and Barriers to American Health Care. October 2009.

20
 SJPH: issue 1, volume 1
Predicting
Alzheimer’s:
The Social and
Policy Implications
of Early Diagnosis
Chloe Stier
writer

D espite decades of groundbreak-

ing investigation and medical ad-
vances, Alzheimer’s disease (AD), a
neurodegenerative disorder and the
sixth leading cause of death in the
United States, remains a troubling
enigma that robs its sufferers of both
memory and autonomy. The dis-
ease’s onset predominantly occurs
later in life and the risk increases
with age, claiming 13% of the pop-
ulation over age 65 and 43% over
85.1 Unlike other leading causes of
death, AD has no cure and no treat-
ment options, save five palliative
drugs approved by the FDA that
reduce symptoms and minimize
suffering for Alzheimer’s patients. Vince Alongi | with permission
With advancing age, Alzheimer’s Disease becomes more likely. New early diagnosis tech-
Currently, conclusive diagnosis nology could have profound implications for sufferers, families, and employers alike.
of AD is only possible via post-
mortem brain tissue examination. whose presence is highly corre- agnosis extend beyond the realm
“Probable Alzheimer’s,” however, lated with disease incidence, sug- of an individual patient’s health
can be clinically diagnosed when gest that it will soon be possible to status; indeed, the ability to predict
progressive deficits arise in two or predict with high accuracy at an Alzheimer’s would have a signifi-
more cognitive areas like memory, earlier stage which healthy indi- cant impact on family dynamics,
language, and executive function viduals will develop AD over the workplace discrimination policy,
and no alternative explanation is course of their lifetimes. Although and the future of the long-term
apparent. But given that these per- the FDA has not yet validated any care insurance industry. As with
ceptible deficits occur ten or more biomarkers for AD, methods such many ethical debates in health-
years after the first neurological as measuring protein levels in ce- care, one cannot make sweeping
changes occur in the brain of an rebrospinal fluid, neuroimaging assertions that these implications
AD patient, at the time of diagnosis to track changes in the brain, and would yield strictly positive or
the disease will have already pro- genetic testing to establish pre- negative outcomes. Instead, it is
gressed to middle or late stages.2 disposition hold great predictive important to probe further, engag-
Advances in clinical diagnostic promise, both individually and ing in a nuanced consideration
capabilities that take advantage in conjunction with one another. of the consequences of early Al-
of biomarkers, natural substances The implications of early AD di- zheimer’s diagnosis for the many
21
POLICY
stakeholders involved, so that
they might be better equipped to
face the ramifications of the diag-
nostic technology’s development.
Unquestionably, the primary
stakeholder in this discussion is
the patient. While the prospect of
receiving notification of an im-
pending neurodegenerative dis-
ease seems objectionable to some,
research suggests that the major-
ity of the U.S. population desires
such information. Three out of four
people would take advantage of
a predictive AD test, expressing a
willingness to pay on average $400-
$500 out of pocket for the analysis.3
Some have voiced concern for
patient emotional well-being and
argue that predictive tests should
not be offered in the absence of a
cure, when nothing can be done
to address the condition save pal-
liative measures. Yet patients
have proven to react well to nega-
tive prognoses. Stanford neurolo-
gist Frank Longo related that only
once in his clinical career treating
Huntington’s patients did anyone
report having regretted the deci-
sion to undergo a diagnostic DNA
test.4 In fact, stress levels have
been shown to decrease in these
patients after receiving the results
of the test, regardless of the posi-
tive or negative nature of the news.5
Although the patient himself may
experience decreased stress, knowl-
edge of the AD’s future onset may
cause significant strain in family dy-
namics. Nearly half of respondents
to the same survey would conceal
test results from their spouse or
significant other if they were to
receive a positive diagnosis.6 This
information, however, has nearly
as significant an impact on the
partner’s life as it does on that of
the patient. Dementia notoriously
places an extremely heavy burden
on caregivers, many of whom suf-
22
fer from high levels of emotional
stress, depression, and ill health
in general.7 While HIPAA regula-
tions entitle a patient to privacy,
the question of whether spouses
ought to be informed is certainly
one that should be considered.
Job security is another common
concern among patients who de-
sire the test, with 45% of respon-
dents reporting that they would
likely experience anxiety over
their employer gaining access to
the diagnosis. These concerns are
not unfounded, as existing nondis-
“ The disease’s onset
predominantly occurs later
in life and the risk increases
with age, claiming 13% of the
population over age 65 and
43% over 85.1 Unlike other
leading causes of death, AD
has no cure and no treatment
options, save five palliative
drugs approved by the FDA
that reduce symptoms and
minimize suffering for
Alzheimer’s patients.
” ments for individuals with demen-
crimination laws at the national
level do not protect against dis-
crimination based on all medical
diagnostic methods.8 The Genetic
Information Nondiscrimination
Act of 2008 (GINA) forbids em-
ployers from making hiring, firing,
and other related decisions based
on genetic information. 9 Thus an
AD patient’s employment secu-
rity may depend on the diagnos-
tic test employed: those assessed
for genetic predisposition would
be protected while those under-
going cerebrospinal fluid testing
or brain imaging techniques are
left legally vulnerable to discrimi-
nation under current legislation.
The same difficulty arises in the
health insurance industry. While
GINA protects those diagnosed
via genetic screening from being
excluded from the insurance prac-
tice or charged higher premiums
based on genetic “pre-existing con-
ditions,” other diagnostic methods
lack this safeguard. Since all three
approaches to Alzheimer’s diagno-
sis are valuable and likely to be used
in conjunction with one another, it
is important to ensure that all pa-
tients receiving predictive testing
for Alzheimer’s have equal protec-
tion against workplace and health
insurance discrimination, regard-
less of the diagnostic method em-
ployed to arrive at that prediction.
Another limitation of the GINA
legislation is its failure to protect
patients from discrimination by
long-term care insurance compa-
nies, whose policies are often vital
to Alzheimer’s patients facing the
disease’s slow progression and high
cost of care. While most patients
live four to eight years after diagno-
sis, some can survive for upwards
of 20.10 Yearly out of pocket pay-
tia, even with Medicare coverage,
are $3,141 when living at home and
$21,272 for those in nursing homes
and assisted living facilities.11
Individuals with advance knowl-
edge of illness, then, understand-
ably seek to shield themselves from
this economic burden. Patients who
have undergone genetic testing and
discovered the presence of ApoE-4,
an allelic variant that indicates an
increased likelihood of developing
AD, are 2.31 times more likely to
subsequently purchase long-term
care insurance.12 But as Hank Gree-
ly, director of Stanford University’s
Center for Law and the Biosciences,
notes, what is a logical decision and
“a godsend for individuals… could
be the death knell for the (long-

term care insurance) industry.”13
Adverse selection arises when
individuals who are more likely to
make insurance claims purchase a
greater propotion of policies than
their healthier peers. When this oc-
curs, the insurance company can
either universally raise premiums
or begin to discriminate based on
pre-existing conditions. If legis-
lation were passed that forbade
price differentiation on the basis
of predicted Alzheimer’s, adverse
selection would eventually drive
the industry bankrupt.14 So while
extant legislation puts patients
SJPH: issue 1, volume 1
at risk for insurance exclusion or
higher premiums, protective leg-
islation would also harm AD pa-
tients by weakening the industry
that provides crucial support for
the costs of their long-term care.
The first wave of Baby Boomers
reached age 65 this year, and in the
coming years the U.S. must confront
the challenge of caring for more el-
derly adults with chronic diseases
than ever before. Part of that re-
sponsibility is good planning. Us-
ing biomarkers to diagnose AD at
its earliest stages is without doubt
a promising step, but the ripples of
early detection are far-reaching. As
Alzheimer’s prediction capabilities
develop, it will be integral to bear
in mind the ramifications not only
for the patient, but also in family
relations, workforce policy, and the
long-term care insurance industry.
*The author would like to thank
Hank Greely and the Stanford In-
terdisciplinary Group for Neuro-
science and Society (SIGNS) for
hosting the informative panel dis-
cussion “Predicting Alzheimer’s
Disease: Science, Medicine, and
Society” that inspired this article.

References
1. Alzheimer’s Association. 2011 Alzheimer’s Disease Facts and Figures. 2011. Available at : http://www.alz.org/downloads/Facts_Fi-
gures_2011.pdf. Accessed April 6, 2011.
2. Hoffman J. The Alzheimer’s Project: The Quest for Biomarkers [web].HBO Documentary Films. 2009. Available at: http://www.hbo.com/
alzheimers/supplementary-the-search-for-biomarkers.html. Accessed April 26, 2011.
3. Neumann PJ, Cohen JT, Hammitt JK, et al. Willingness-to-pay for predictive tests with no immediate treatment implications: a survey of
U.S. residents. Health Economics. 2010. Available at: http://onlinelibrary.wiley.com/doi/10.1002/hec.1704/pdf. Accessed April 8, 2011.
4. Predicting Alzheimer’s disease: science, medicine, and society. Stanford Interdisciplinary Group on Neuroscience and Society. January
24, 2011.
5. Predicting Alzheimer’s disease: science, medicine, and society.
6. Neumann PJ, Cohen JT, Hammitt JK, et al.
7. 2011 Alzheimer’s disease facts and figures.
8. Neumann PJ, Cohen JT, Hammitt JK, et al.
9. National Human Genome Research Institute. Genetic Information Nondiscrimination Act of 2008. 2010. Available at: http://www.
genome.gov/10002328. Accessed April 8, 2011.
10. 2011 Alzheimer’s disease facts and figures. Alzheimer’s Association.
11. 2011 Alzheimer’s disease facts and figures. Alzheimer’s Association.
12. Taylor DH, Cook-Deegan RM, Hiraki S, et al. Genetic testing for Alzheimer’s and long-ter care insurance. Health Affairs. 2010; 29(1):
102-108.
13. Predicting Alzheimer’s disease: science, medicine, and society.
14. Predicting Alzheimer’s disease: science, medicine, and society.

23
PRACTICE
The Formula for Successful Activism:
Social Media’s Role in Public Health
Laura Potter,
writer and layout
R espectively the second, third,
and ninth most popular web-
sites in the world: Facebook, You-
Tube, and Twitter, touch the lives
of hundreds of millions of people
everyday.1 Many public service or-
ganizations have recognized the
great potential of these new social
media networks and their world-
wide audience of daily users.
“Public health leadership is even
more demanding today than ever
before,” explains Dr. Caricia Cata-
lani of Research Triangle Institute
International. “For researchers,
physicians, and health educators to
be effective in improving health in
our nation and across the globe, they
must be empowered users of social
media.” Catalani and three other ex-
perts weighed in on the advantages
and challenges of leveraging social
media to improve public health.
Without exception,the team
agreed upon the great potential
of social media. Three goals for
using social media that surfaced
in all four interviews were edu-
cating and spreading awareness,
engaging people and commu-
nities in public health research,
and mobilizing people to action.
Julieta Kusnir, a KPFA radio host
and producer for La Raza Chroni-
cles, has vast experience in public
health education: her radio seg-
ments on health access inequities,
policy changes, and other related
news reach many thousands of
northern and central Californian
listeners both on the air and on-
24
line every week. Kusnir stressed
the importance of inviting relatable
guests on her show, rather than
public health professionals, to bet-
ter access her listeners. She argued
that professionals’ expertise and
jargon-laden vocabulary can be
difficult for audiences to compre-
hend or apply to daily situations,
rendering the message ineffective.
Not surprisingly, her listen-
ers respond best to people from
their own communities present-
ing public health issues in a rel-
evant, relatable manner; hearing
from everyday people who are public domain
well-versed in these public health where, as she explained, “investiga-
issues maximizes the social media tors can engage communities who
users’ understanding and the like- are normally the targets of research
lihood that they will share their and intervention in the process
new awareness with others. Kusnir of investigation and implementa-
shared this message in her seminar tion using new social media tools.”
on podcasting to students in the To ensure that her project was
21st Century New Media Training successful, she provided commu-
Series at the UC Berkeley Center nity health workers with laptops
for Health Leadership, helping the to bring HIV educational media
next generation of health activists into rural areas. In doing so, she
become more effective educators. forwent the traditional approach
Equally important to education is to public health research, which,
involving people and communities according to her, “involves only
experts as leaders of prevention
“ We have to give people
more than the facts.
campaigns, disseminators of in-
formation, and scientific investi-
gators,” since this expert-driven
— Julieta Kusnir approach has thus far had limited
Producer of La Raza Chronicles success. Community health work-
ers, on the other hand, are local
”
in research via social media. Cata-
individuals who have been trained
and can determine how best to ap-
lani’s work on HIV prevention in proach health issues in their com-
South Asian countries like India and munity because, unlike external ex-
Bangladesh is one example of ways perts, they are close to the people.

Catalani cited the example of heart
disease, arguing that “although
millions of dollars have been spent
on heart disease research and in-
tervention, it remains one of the
top causes of death in our nation.”
So how can civilians transform
into empowered social media us-
ers making a difference? In The
Dragonfly Effect, Stanford Gradu-
ate School of Business Professor
Jennifer Aaker explains the key to
molding activists out of day-to-
day, casual social media users. She
recently partnered with Stanford
University’s Haas Center for Public
“ Investigators can
Service on her 100,000 Cheeks proj-
ect, in an effort to combat blood-
born cancers by expanding bone
marrow donation among the South
Asian population. The Dragonfly
Effect advises public health projects
using social media to stay focused
on their audience, balance vision-
ary long-term and tactical short-
term goals, remain flexible, and
hone in on highly specific goals.
Aaker claimed that adherence to
these goal-setting guidelines will
“beget greater satisfaction and, ul-
timately, a stronger commitment”
among participating social me-
dia users. And once an emotion-
ally invested, active network of
people is established, in Aaker’s
words, “the options are endless.”
All that is left to do is to channel
the public’s collective energy for
a given public health initiative.
In order to do so, Kusnir said,
“we have to give people more
than the facts.” She makes sure
every week’s broadcast on La
Raza Chronicles includes not only
an overview of the problem but
more importantly, “next steps.”
The experts all agreed that edu-
cation and community research
alone can only advance a project
so far. The key to garnering contin-
ued, active support is directly ask-
SJPH: issue 1, volume 1
ing viewers for help and providing
them with feasible applications.
The 100,000 Cheeks campaign’s
YouTube videos, for instance,
strongly encourage ordinary peo-
ple to volunteer to swab cheeks
in their own communities, con-
veniently supplying all of the re-
sources and information necessary
to plan and execute such an event.
The results are impressive; Execu-
tive Director of the Haas Center,
Thomas Schnaubelt reports that
engage communities
who are normally the
targets of research and
intervention in the pro-
cess of investigation and
implementation using
new social media tools.
— Caricia Catalani
Research Triangle Institute International
”
about 35,000 people have regis-
tered.
Catalani found that “even in parts
of the world where people have
never used a computer, inexpen-
sive media can be shared through
mobile devices to make a difference
in HIV prevention.”
Although her findings seem
promising, National Geographic
reports estimate that only 22 per-
cent of the world’s poorest 1 billion
have cell phones, few of which are
smartphones with video streaming
capabilities, and only 2.3 percent
use the Internet.2 Even if access
improves in these areas, the issue
of media literacy will create more
challenges. No matter how great
the potential of social media may
be, people without the necessary
technological access and media lit-
eracy skills simply cannot contrib-
ute to or benefit from those public
health campaigns.
Many people are additionally
concerned, Schnaubelt explained,
about “privacy and the broadcast-
ing of a person’s medical informa-
tion online.” Catalani mentioned
how “social media invite[d] chal-
lenges around privacy and pro-
tection of identities of people liv-
ing with HIV or other stigmatized
identities.” Along with the issue of
access to social media, public health
initiatives using social media must
address privacy.
All four contributors expect the
role of social media in public health
to evolve over time. The potential
these new media have for use in
public health initiatives must rec-
oncile issues of privacy. Neverthe-
less, “we have to use all of the tools
that we have available to us, with-
out purism,” Catalani said. “A mix
of technological and non-techno-
logical approaches will allow for a
broader range of opportunities for
engagement.”
References
1. The Top 500 Sites on the Web. Alexa: The
Web Information Company. 2011. Available
at: http://www.alexa.com. Accessed April
21, 2011.
2. The World of Seven Billion. Na-
tional Geographic website. 2011. Avail-
able at: http://ngm.nationalgeographic.
com/2011/03/age-of-man/map-interactive.
Accessed April 21, 2011.
25
PRACTICE
When Numbers Meet Health
An Effort to Quantify and
Compare Efficacy of Health
Initiatives and Technologies
Katy Storch
writer
E ran Bendavid, MD, MS, an af-
filiate with Stanford’s Center for
Health Policy and an Assistant Pro-
fessor in the Division of General
Medical Disciplines at the Stan-
ford School of Medicine, and Grant
Miller, PHD, MPP, a Core Faculty
Member with Stanford’s Center for
Health Policy and Assistant Pro-
fessor of Medicine at the Stanford
School of Medicine, are currently
developing a seminal strategy for
evaluating active health care initia-
tives and technologies in develop-
ing countries.
“Twenty percent of all United
During a recent interview with
Bendavid, he spoke about the the-
ories, motivations, and goals that
have combined to produce this
groundbreaking and proactive re-
search project.
Miller and Bendavid’s work
merge in their mutual intention
to establish a common metric for
health technology and initiative
successes. Their research focuses
on foreign aid from the United
States, Organization for Econom-
ic Co-Operation and Develop-
ment (OECD) nations, and other
wealthy western countries. Thus
far, their studies of recipient coun-
26
tries of foreign aid have concen-
trated mainly in Africa.
Currently, twenty percent of all
United States foreign aid is direct-
ed toward health improvements, a
stark contrast to the mere four per-
cent that was given only a decade
ago. As the amount of foreign aid al-
located specifically to health grows
more rapidly, it is becoming more
critical to develop such a metric.
“There is a concern that this is a
lot of money—we had better make
States foreign aid is directed
toward health improvements,
a stark contrast to the mere
four percent that was given
only a decade ago.
” of disease burden on quality of life.
sure it is doing well,” Bendavid
said regarding effective appro-
priation of monetary aid. “There
are a lot of evaluations out there
that, when one digs deeper, re-
ally don’t offer definitive answers.
They are based off of inconclusive
evidence. But we want to be able to
answer questions determinately.”
Using cost-effectiveness analysis,
Bendavid and Miller plan on eval-
uating the various current health
reforms and technologies in devel-
oping countries. Based on results
from this analysis, they will either
promote maintenance or revision of
these initiatives.
Within the cost-effectiveness
framework, the concepts of quality-
adjusted life years (QALY) and dis-
ability-adjusted life years (DALY)
have been developed to better
quantify the effectiveness of health
reforms.
The QALY is quantitative and
qualitative in its measure of life
years. A person who is affected by
disease but lives longer due to med-
ical technologies may have gained
life years, but of a lesser QALY
value due to the depleting effects
On the other hand, the DALY is a
measure of life years afflicted with
disability and life years lost due
to disability in cases of premature
death.
Bendavid and Miller are working
on enumerating the effectiveness
of foreign health interventions and
technologies on a case-by-case basis
that will allow for straightforward

Nations receiving the greatest degree of foreign monetary assistance appear darkest. Aid is concentrated in Africa, Southeast Asia, and in
some Latin American nations. Miller and Bendavid want to assess how effectively this money is spent on health using their new metric.
comparison of the overall effective-
ness of each one. By quantifying
the amount of QALYs and DALYs
each initiative or technology adds
or saves, and then comparing this
value to the amount of monetary
fund put into each, a health metric
is established to better evaluate cur-
rent appropriation of foreign aid.
This is where Bendavid’s side
of the project really comes into
play. “My interests are centered in
what we do in the United States
that affects health improvements
of people in other countries,” said
Bendavid. “But my work is more
investigative—I follow the money.”
Bendavid’s research pertains es-
pecially to Africa, where certain
nations receive fifty percent of all
health funds from foreign assis-
tance alone. He wants to under-
stand the effects of foreign aid in
studying specific programs, par-
SJPH: issue 1, volume 1
ticularly how developing countries
can be hindered due to dependence
on foreign assistance.
For example, Bendavid collabo-
rated on a study with Miller, Eric Le-
roux, PhD; Jay Bhattacharya, PhD;
and Nicole Smith, PhD that looked
at a public health outcome—ex-
panded provision of antiretroviral
therapy (ART) to treat HIV-infected
individuals in sub-Saharan Afri-
ca—and showed that foreign assis-
tance for HIV played a larger role
in this expansion of coverage than
price reductions for the therapy.
“There are people who believe
that foreign aid in general is un-
favorable because of induced de-
pendency and prevention of de-
velopment of native sustainability
for the country. I want to know if
this harm is really being done.”
Using cost-effectiveness analyses
and other similar monetary track-
Overseas Post | with permission
ing approaches, Bendavid hopes to
quantify the effects of health pro-
grams, policies and technologies
in developing countries. This will
provide conclusive evidence on the
effectiveness of a particular initia-
tive, and will help policymakers in
devising future improvements.
When asked about the most com-
pelling component of his research,
Bendavid responded, “Students
are compelled by the fact that they
are so well-off in comparison to the
people abroad—people who are
dying in their forties. This is the
part that compels me most too. I
want to understand the way that
we can help people who are ailing.”
*The author would like to thank
Dr. Grant Miller and Dr. Eran Ben-
david for providing their insights
through interviews.
27
PRACTICE
Measles and Polio Eradication
Striving Towards a Post-Infectious Disease Era
Katie Nelson, practice editor
Jason Bishai, research review
F ollowing the successful eradi-
cation of smallpox in 1979, the
public health community began to
see total disease eradication as a
feasible goal. Indeed, the US Sur-
geon General was confident that
vaccination science was about to
“close the book” on infectious dis-
ease.11 In this buoyantly optimistic
era, measles and polio appeared to
be the next candidates, since they
met certain criteria for eradica-
tion and had vaccines already de-
veloped. Many scientists believed
that a worldwide epidemiological
transition to a post-infectious dis-
ease era was just around the corner.
However, it has been thirty years
since the eradication of smallpox,
and while certainly some progress
has been made, measles and polio
are nowhere near eradicated. De-
spite a pledge by the World Health
Organization (WHO) to eliminate
polio from the world by 2000, and
a massive expenditure of resources,
the incidence rate has remained
the same since 2001. Public health
efforts by the WHO and non-gov-
ernmental organizations (NGOs)
have been stymied by organiza-
tional problems, campaign fatigue,
and the sheer scale of the problem.
Both measles and polio are the-
oretically eradicable, based on
epidemiological criteria. The first
criterion is that an intervention
exists. A vaccine or prophylactic
measure is necessary to prevent
transmission to susceptible indi-
viduals. Secondly, the disease-
28
causing agent must be clinically
identifiable; if the disease cannot be
identified, no measure of incidence
can be obtained, making it difficult
to gauge the success of an eradi-
cation program nor can a specific
intervention be tailored to the dis-
ease. Finally, the disease must ex-
“Public health efforts by the
WHO and non-governmen-
tal organizations (NGOs)
have been stymied by organi-
zational problems, campaign
fatigue, and the sheer scale of
the problem.
ist only in a human reservoir.
” than the eradication of smallpox.
If there are natural reservoirs such
as soil, water or other animals, then
there will always be sources of new
infection that cannot be prevented
without some sort of prohibitively
expensive intervention.22 Small-
pox met all three of these criteria:
it was clinically distinctive, there
was an effective vaccine, and the
virus required a human host to
survive. Since polio and measles
also fulfill these criteria, they tech-
nically can be eradicated as well.
All eradication strategies must
meet one goal in order to be suc-
cessful: to reduce the secondary
case rate below 1.0 per case. This
means that for every person who
gets sick, they transmit the disease
to on average less than one other
person. This eventually leads to
the extinction of the disease, and
the lower the secondary case rate,
the faster eradication can occur.
The general mechanism used to
lower secondary case rates is to cre-
ate herd-immunity within a popula-
tion. This means vaccinating a large
enough proportion of the popula-
tion such that an individual with a
disease does not come into contact
with other susceptible hosts and
subsequently transmit disease thus
reducing the secondary case rate.
Unfortunately, there are cer-
tain complications originating in
the unique pathogenesis and epi-
demiology of both measles and
polio that make their eradica-
tion comparatively more difficult
“Ring Vaccination” was a key el-
ement of smallpox control, which
made it relatively cheaper and
easier than a blanket vaccination
strategy. This entailed surveillance
of at-risk communities, rapid de-
tection and reporting of any small-
pox cases. The infected individual
would be quarantined and anyone
who possibly had contact with the
infected individual was vaccinated.
This strategy served to minimize

The Bill and Melinda Gates Foundation donated to the Global Measles and Polio Initiative in 2010. This will support the efforts of the Inter-
national Federation of Red Cross and Red Crescent Socities to eradicate these two diseases that remain in the developing world.
the number of secondary cases
that could arise from any primary
infection event at a local scale.2
In the case of polio infection, the
disease only leads to the character-
istic paralysis in approximately 1%
of infected individuals. In the re-
maining 99%, polio infection leads
to generic flu-like symptoms. This
greatly complicates clinical identifi-
“Polio is especially attractive
cation of all but a small minority of
polio cases and therefore prevents
effective ring vaccination, since it is
unclear who is shedding the virus.2
Environmental considerations
specific to endemic areas can also
render campaigns ineffective. Be-
cause polio is also spread through
the fecal-oral route, in areas of poor
sanitation, polio can be spread
through large groups of people
through contaminated water sourc-
es, which is most often the case in
endemic polio-afflicted regions.
SJPH: issue 1, volume 1
As for measles, the highly infec-
tious nature of the virus itself has
proved prohibitive to the same
types of strategies that worked for
smallpox. The virus is transmitted
via aerosol droplets expelled by
an infected individual that can re-
as an eradication target
because fully 75% of
incident cases are confined
to three regions: northern
Nigeria, northern India,
and parts of Pakistan and
Afghanistan.
” target because fully 75% of incident
main in the air for a prolonged pe-
riod of time. Measles is also highly
contagious, causing disease in 90%
of exposed non-immune contacts.
World Economic Forum | with permission
This renders the quarantine as-
pect of ring vaccination useless,
as an identified case of measles
almost certainly leads to second-
ary cases by the time it is reported
in non-vaccinated populations.2i
As eradication efforts stand now,
there is currently more of a global
focus on polio eradication. An or-
ganized Global Polio Eradication
Initiative exists as a partnership
between the WHO, CDC, Rotary
International and other public and
private organizations, and there is
significant recent funding from the
Gates Foundation to accelerate po-
lio eradication efforts. Polio is es-
pecially attractive as an eradication
cases are confined to three regions:
northern Nigeria, northern India,
and parts of Pakistan and Afghani-
stan. The geological localization
of the virus means that a focused
29
PRACTICE
effort in these regions will have
the maximal effect on eradication.
Despite this, some scientists
have expressed their dismay with
the trend to favor polio eradica-
tion as a primary and immediate
goal. Measles kills more children
annually than any other vaccine
preventable illness, yet it has not
received the kind of press atten-
“In addition to the life-saving
tion and massive funding influx
that polio has.33 The WHO, as of
2010, had not reached a global con-
sensus on measles eradication.44
While polio eradication may be
more reasonable to achieve in the
near future due to pre-existing in-
frastructure and funding, there
is little reason not to pursue the
concurrent eradication of measles.
Professor Yvonne Maldonado, an
infectious disease clinician and po-
lio researcher at the Stanford Hos-
pital, suggests that the model for
polio eradication could easily be
applied to measles, and that there
is no evidence that concurrently
eradicating measles would detract
from the current polio eradication
effort. Indeed, a measles eradica-
tion movement could easily dove-
tail with the existing infrastructure
for polio vaccination campaigns.
But is eradication worth it, or
would public health dollars be bet-
ter spent on other causes? A cost-
effectiveness analysis indicates that
eradication is in fact a worthwhile
project. A common metric for de-
termining the improvement in the
human condition is dollar spent
per death and disability adjusted
life year (DALY) averted, a disabil-
ity adjusted life year being a year
benefit measles eradication
has in lower income coun-
tries, the eradication of mea-
sles in a 10-15 year timeframe
is predicted to save high-in-
come countries $500 million.
where one’s health is subprime.
In the instance of measles eradi-
cation, a disease model created
by Professor David Bishai at the
Johns Hopkins School of Public
Health predicts that average cost
of preventing one measles death
in middle and low income coun-
tries would be $27-$31. This cost
estimation takes into account the
Reaching Every District (RED)
control strategy, which entails vac-
cination in remote and difficult
to reach locations within a coun-
try. This is far cheaper than ac
tually treating measles pa-
tients, as well as most life-
saving medical interventions.
Even with polio being the more
cost-effective disease to eradicate,
the dollars per life saved ratio for
measles eradication is remark-
ably favorable. In addition to the
life-saving benefit measles eradi-
cation has in lower income coun-
tries, the eradication of measles
in a 10-15 year timeframe is pre-
dicted to save high-income coun-
tries $500 million by 2050, by
averting occasional outbreaks.
After eradication is confirmed,
high-income countries could plau-
sibly save $1.5 billion alone, sim-
ply by discontinuing the second
booster measles vaccinations.55
The old adage that an ounce
” of prevention is worth a pound
of cure holds especially true in
the realm of disease eradica-
tion. Eradication of both polio
and measles is perhaps one of the
most cost-effective ways to save
human lives, and with the model
provided by the Polio Eradication
Initiative, and the drive of philan-
thropists, a polio- and measles-
free future is a definite possibility.
*The authors would like to
thank Dr. Yvonne Maldonado
for providing key insights into
the workings of disease eradica-
tion and vaccination programs.

References
1. Sassetti CM, Rubin EJ. The open book of infectious diseases. Nat Med. Mar 2007;13(3):279-280.
2. Maldonado Y. Personal Interview. 8 April 2011.
3. John TJ. Measles: an exanthem that can be eradicated. Lancet. Jun 2003;361(9375):2157.
4. “WHO | How Big a Problem Is Measles? What Is Being Done to Prevent It?” The World Health Org.
5. Bishai D. Measles eradication versus measles control: an economic analysis. To be published in J. Clin Epidemiol

30

Addressing Global Pandemics
Preventing Emergence of Infectious Diseases
through Surveillance at the Source
Autumn Albers, investigation editor
B uilding upon traditional pub-
lic health approaches, Global Viral
Forecasting (GVF) presents a fresh
perspective in addressing the global
threat of infectious disease. Found-
ed by Stanford alumnus and visit-
ing professor Dr. Nathan Wolfe in
2000, GVF is an organization dedi-
cated to the development of a global
system to predict and prevent pan-
demics for the promotion of great-
er human welfare. To gain insight
into GVF’s approach and current
projects, SJPH interviewed Stepha-
nie Nevins, a research director for
GVF’s Innovative Research Team.
Nevins believes that GVF’s fo-
cus on disease prediction and
prevention sets it apart from tra-
ditional public health efforts.
“Global disease control has really
been focused almost exclusively
on responding to epidemics rather
than being able to predict them
or forecast them in any way. Our
company really strives to prevent
novel and emerging pandemics,”
she says. GVF’s unique approach
makes this possible. In their multi-
faceted approach, GVF research
teams investigate the methods
by which diseases spread at the
biological level, behavioral level,
and social and technological level.
Biological research led to the
founding of Global Viral Forecast-
ing. Dr. Nathan Wolfe’s landmark
discovery that HTLV-3 and HTLV-4,
SJPH: issue 1, volume 1
two viruses belonging to the same
family as HIV, had “spilled over”
from primates to hunters in Cam-
eroon, Africa, formed the basis for
GVF as an organization that would
continue the viral discovery re-
search that Dr. Wolfe had initiated.
Currently GVF has projects fo-
cused on viral discovery and vi-
ral monitoring in over twenty
countries, many of which are in-
“ Currently GVF has proj-
ects focused on viral dis-
covery and viral monitoring
in over twenty countries,
many of which are infre-
quently studied by other pub-
lic health organizations.
” have butchering events, exposing
frequently studied by other pub-
lic health organizations. GVF’s
biological research teams collect
blood samples from high-risk
wildlife and human populations,
and test them in the laboratory
for potentially dangerous viruses.
Nevins explains that GVF’s field-
work is structured by maintaining
a set of hunters and wet meat mar-
kets that they constantly monitor.
GVF introduces volunteer hunt-
ers to become part of their global
monitoring network by, on their
own, collecting small blood sam-
ples of the animals that they are
killing and butchering. They collect
these samples on filter paper, store
them for collection by a field team
who then travels back to those sites
regularly to collect more samples
and to inform those hunters, their
families, and others in their vil-
lage what has been identified in the
samples that have been analyzed.
GVF focuses on bushmeat hunt-
ers and wet markets because they
include two populations that are
at high risk for spillover events be-
tween animals and humans. Bush-
meat hunters are often in direct
contact with the blood and fluids of
animals during butchering, putting
them at high risk for parenteral vi-
ruses that may enter through cuts
and punctured skin. Similarly, wet-
markets selling live animals also
both vendors and consumers to
potentially dangerous animal flu-
ids. In addition, wetmarkets pose
another risk: by containing a vari-
ety of animals within a small area,
they serve as a hotspot for cross-
species contamination of disease.
Because human behaviors like
bushmeat hunting and participat-
ing in wet market activity are linked
to disease risk, behavioral research
is also key to GVF’s pandemic
surveillance. GVF’s behavioral re-
search team focuses on the anthro-
pology associated with risky behav-
iors. According to Nevins, the team
looks at the degree of interaction of
31
INVESTIGATION
bushmeat hunters with wild animal
carcasses and measures the spe-
cific risk points and degree of risk
associated with different species
and different hunting techniques.
They use the information to rec-
ommend behavioral changes that
will mitigate disease risk and im-
prove health in these communities.
However, making behavioral rec-
ommendations in these communi-
ties is not always easy. Nevins claims
that one of the biggest challenges
with behavioral research is finding
the balance between research and
cultural sensitivity. For example,
while it seems logical to encour-
age people not to eat bushmeat,
this issue is much more complex.
Bushmeat hunting is a cultural
and traditional practice that is often
used to supplement household nu-
trition, especially in places where
there is no available supply of do-
mestic meat. As a result, while re-
searchers see the hunting and butch-
ering of wildlife as a serious health
threat, they must be sensitive to the
cultural practices of the communi-
ties, particularly when the practices
reflect important dietary needs.
Nevins explains, “The issue requires
thinking critically not only about
the biological implications of the
behavior, but also the cultural rea-
sons for which the behavior exists.”
She emphasizes that cultural sensi-
tivity is really important to keep in
mind when doing research in an-
other country and another culture.
GVF’s final main area of research,
the area that has been increasing in
activity most recently, is its involve-
ment in social and technological
sectors that are not directly affili-
ated with public health. Since its
founding in 2000, GVF has worked
closely with Google.org and the
Skoll Foundation. It has investi-
gated how online sources of in-
formation can be used as markers
for disease spread and has “part-
32
nered with various organizations
and start-ups in Silicon Valley, ex-
ploring the ways to use social net-
working, vocal phone records, and
text message technology to track
disease spread and improve over-
all health.” Nevins notes that text
messaging (SMS) is particularly
important in monitoring disease
globally, as text message technolo-
gy is widely used and readily avail-
able to people all over the world.
One of GVF’s most recent projects
in the technological sector is based
on a partnership with Harvard Uni-
versity and Facebook. GVF will be
investigating the ability of Facebook
data to provide early warning signs
of contagious disease spread. They
will probably initiate this research
on a college campus in the fall.
The ultimate goal of GVF is two-
fold, according to Nevins. The first
goal is to give back to the popula-
tions in which GVF performs in-
vestigative research. GVF aims to
“educate populations, especially
the ones that [they are] actually
researching—bushmeat hunters,
wetmarket goers—about emerg-
ing disease threats,” says Nevins.
Because bushmeat hunters and
Bushmeat hunters are considered a high risk group for viral crossover because they
have direct contact with the blood and fluids of the animals they collect and butcher.
wetmarket attendees might be at
higher risk for acquiring or spread-
ing these diseases, GVF educates
them on how they might alter
their behavior to mitigate those
risks. The second goal is to in-
crease the world’s knowledge of
pathogen diversity by collecting
samples, building knowledge and
sharing its investigative research
in collaboration with other pub-
lic health groups, including the
World Health Organization (WHO)
and the Centers for Disease Con-
trol (CDC). “Our research is really
trying to push forward one whole
comprehensive system that allows
researchers, academic institutions,
[and] large government organi-
zations to be able to use all the
information as a whole to under-
stand the diversity of disease and
other viruses that are out there.”
Through their unique approaches
to public health research that uti-
lize the biological, behavioral, and
technological fields, GVF aims to
increase the ability of public health
researchers to predict, understand
and respond to disease emergence,
outbreak, and spread worldwide.
Global Viral Forecasting | with permission

The Dirt on Hand Hygiene
Research Projects in Africa
Helena Scutt
writer
T he second-largest killer of chil-
dren under five is easily prevent-
able and treatable,1 yet it kills 4,000
children each day.2 This killer,
diarrheal disease, causes death
by severe dehydration, and espe-
cially affects young children due
to their weakened immunity and
high surface area to body mass ra-
tio.2 During the 1980s and 1990s,
improvements in access to sani-
tation, oral rehydration solution,
and clean water greatly reduced
diarrhea-related deaths.3 However,
preventable child mortalities re-
sulting from diarrhea still occur,
particularly in areas of the world
with limited access to clean water.
In efforts to address this prob-
lem, Stanford’s aptly named ‘Poop
Group’ researches the intersection
of water, sanitation practices, and
public health under the leader-
ship of Dr. Jenna Davis. Recent
Stanford graduate Annalise Blum
(B.S. Environmental Engineer-
ing, 2010) and Fulbright scholar
Jessie Liu (B.A. Human Biol-
ogy, 2009) are alumni of the Poop
Group. Along with Stanford PhD
candidate Amy Pickering, Blum
and Liu have worked on projects
that focus on the importance of
contaminated hands in transmit-
ting diarrhea-causing pathogens.
Blum, who worked in Kenya and
Tanzania, and Liu, who worked in
Tanzania, gave SJPH insight into
their experiences, highlighting the
SJPH: issue 1, volume 1
challenges of investigative public
health research in the developing
world. Each of their perspectives
reveals setbacks, surprises, and les-
sons learned in research that pro-
vide useful advice: when conduct-
ing research outside of one’s own
culture, nothing can be assumed.
Blum and her fellow research-
ers had to be flexible with their
surveys, avoiding the assump-
“ Our driver was shocked
that all four of my
grandparents were still
alive. There was one incident
in which our house helper
texted us a message one
morning, ‘My sista die 2day.
Can I come in Wed insted?’
— Jessie Liu
Alumna of the Poop Group
” periences in Dar es Salaam, Tan-
tion that a single, fixed set of
questions could be used at all lo-
cations. In the study that Blum
worked on, surveillance cameras
were posted in schools in Kibera,
Kenya to monitor how often stu-
dents used alcohol-based hand
sanitizer after visiting the latrine.
Blum recounts that her group
fully developed their research
question and wrote the baseline
survey before going to Africa, but
that once there, the survey process
was not static. “We make changes
to our surveys based on conver-
sations with our enumerators [lo-
cals hired to conduct the surveys]
and results of the pilot-testing
in the field. This helps make the
surveys more appropriate to the
local context and better at col-
lecting relevant data,” Blum sug-
gested. She further highlights the
importance of adaptability in not
just the research method, but more
broadly, in public health measures
with her belief that “there are not
one-size-fits-all solutions. Solu-
tions must be tailored to commu-
nity needs,” which became clear-
er to her throughout the study.
Like Blum, Liu also found it im-
portant to keep an open perspec-
tive when doing research in an
unfamiliar culture. Liu noted that
what surprised her most in her ex-
zania, was the imminence of mor-
tality. She explained, “Our driver
[in Tanzania] was shocked that all
four of my grandparents were still
alive. There was one incident in
which our house helper texted us
a message one morning, ‘My sista
die 2day. Can I come in Wed inst-
ed?’ Wednesday was the next day.”
The cultural system that had de-
veloped to deal with early or un-
expected death was striking to Liu
and played a role in shaping her
thesis research. Nearly everyone,
even collaborators with doctor-
ate degrees from the Muhimbili
University of Health and Allied
Sciences, expressed a certain de-
gree of fatalism and belief in su-
33
INVESTIGATION
Children in the Slum of Kibera, Kenya dispense collected water into their own jugs. Such a
system can spread diarrheal disease-causing pathogens.
pernatural entities. When revis-
ing the survey with input from
Tanzanian enumerators, this sys-
tem of beliefs provided an inter-
esting cultural context for Liu as
she assessed the extent to which
mothers believe they can con-
trol the health of their children.
Keeping her assumptions at bay
was also essential to Liu when in-
vestigating why diarrheal illness
is so prevalent in Dar es Salaam.
Her study assessed the perceptions,
knowledge, and attitudes of moth-
ers when considering the preven-
tion methods they use to maintain a
ANNALISE BLUM | with permission
healthy family. Liu found that de-
spite what people might assume,
knowledge of disease transmis-
sion and diarrheal illness did not
correlate with a mother’s decision
to perform certain hand-washing,
sanitation, water treatment, or Oral
Rehydration Salt-use behaviors.4
Rather, these health behaviors
correlated with the self-efficacy
of the mother: her perceptions of
whether she could prevent diar-
rheal illness or control her situa-
tion. Liu’s findings emphasize that
only implementing educational
interventions to address child-
hood diarrhea may be insufficient.
Allowing the research to inform
one’s perceptions rather than rely-
ing on one’s own preconceptions
about why a problem exists is vital.
In both of their projects, Liu and
Blum avoided a common mistake
in research—the assumption that
locals would provide honest and
truthful survey responses when
questioned by visiting research-
ers. Blum notes that “in Kibera,
a lot of foreigners have come in
and made promises they haven’t
always kept.  So residents may be
hesitant to trust wazungu (foreign-
ers).” Thus the enumerators were
vital to both projects because they
gained the trust of the participants.
Blum emphasized, “anywhere
you’re working, have the locals
ask the survey questions.” Simi-
larly, in Tanzania, “all enumera-
tors were local or Tanzanians who
had already spent considerable
time in Dar.” The important role
of enumerators suggests that in
research of this nature, often who
is delivering the survey can be as
important as what the survey asks.
Through their experiences, Blum
and Liu show us some of the chal-
lenges that arise when pursuing
investigative research in another
culture. They suggest that research-
ers should be prepared to adapt
their approach based on the val-
ues and customs of the people in
order to develop accurate findings
and access real community needs.

References
1. PATH. Defeat DD: Understanding the Crisis. Available at: http://defeatdd.org/understanding-crisis. Accessed April 19, 2011.
2. PATH. Defeat DD: Diarrheal Disease. Available at:
http://www.defeatdd.org/understanding-crisis/diarrheal-disease. Accessed April 19, 2011.
3. Forsberg BC. Diarrhoea Case Management in Low- and Middle-income Countries—An Unfinished Agenda. Bulletin of the World
Health Organization. 2007; 85:42-48.
4. Liu J. Maternal Beliefs and Behaviors in the Prevention of Childhood Diarrhea in Dar es Salaam, Tanzania. Program in Human Biology
Honors Thesis.

34
 SJPH: issue 1, volume 1

“It Was My Daughter’s Greatest Merit”:

Reframing Barriers to Organ Donation in Thailand
Lucinda Lai
Stanford University, 2011
Abstract
In spite of Thailand’s technological capacity to perform organ transplantation, there is a severe national short-
age of donor organs. This article investigates the barriers and incentives to organ donation in the Thai con-
text, including particular cultural, religious, ethical, and institutional phenomena. Eighteen semi-structured,
qualitative interviews with medical professionals involved with organ transplantation were conducted at pri-
vate and public hospitals in Bangkok. Full transcripts were analyzed using grounded theory methods, includ-
ing multi-pass coding with a tiered coding rubric, for the development of a model. The major barriers and in-
centives for organ donation fall under overarching themes that occur in one of three oppositional pairs: First,
physicians feel a conflict between brain death as the natural demarcation of death versus a mere an artificial
definition. Second, the organ donation system relies primarily on physicians’ internal motivation for facilitating
donation, rather than external incentive structures. Third, physicians report feeling over-burdened by the pros-
pect of facilitating donation, as transplant coordinators feel underutilized in the process. Policy and education
have the potential to reframe attitudes within each of these three thematic spectra in order to favor organ dona-
tion. Additional study is needed to determine this model’s ability to improve organ donation in other countries.

Introduction
Consider this case from the Oc-
tober 20, 1998 issue of the Bang-
kok Post titled, “The Gift of Life.”1
A mother was notified that her
daughter and husband had been
in a terrible car crash. Her hus-
band had died instantly. Emer-
gency vehicles rushed her daugh-
ter to the hospital, but the doctor
declared her brain dead, with zero
chance of survival. Even though
the mother was overwhelmed
with grief, the doctor asked for
her consent to donate her daugh-
ter’s heart, kidney, liver, and lungs
to patients around the country
whose own organs have failed.
This mother, like many Thais, feared
that being buried or cremated not
“whole” would cause the deceased
to be reborn with those organs
missing or defective in the next
life. She sought religious advice
from a monk, who told her, “Giv-
ing life to others is a great merit.”
The monk may have even cited the
popular story of the self-sacrificing
bodhisattva (previous incarnation of
the Buddha), who plucked out both
of his eyes to give to a blind beggar.
Thus, Thai culture and Buddhist
religion set up a tension in which
families of brain-dead patients feel
both reluctance and motivation
to donate the deceased’s organs.
The purported existence of re-
ligious and cultural barriers to
medical technologies, especially
one with as much potential to
save lives as organ transplanta-
tion, raises important questions.
To what degree does the notion
of defective reincarnation actually
stand in the way of people becom-
ing organ donors? What steps
must be taken between the iden-
tification of a brain dead potential
donor in the Intensive Care Unit
and the procurement of the or-
gans in the operating room? How
do medical professionals navigate
the complex landscape of religious
beliefs, sociocultural norms, in-
tense emotions, and moral obliga-
tions implicit in organ donation?
Literature Review
Organ transplantation has become
the therapy of choice for patients
with organ failure.2 Owing to the
outstanding results achieved, how-
ever, demand for organ transplan-
tation far outstrips the availability
of donor organs.3 The discrepancy
between demand and supply for
donor organs points to the exis-
tence of barriers to organ donation.4
Understanding and overcoming
these barriers is now a top prior-
ity for organ donation research.4
Since its inception, organ trans-
plantation has been guided by the
overarching ethical requirement
known as “the dead donor rule,”

35
INVESTIGATION
Supply (deceased donors and organ transplant candidates) and demand (waitlist candidates)
for donor organs in Thailand, 2000 to 2009
whivch simply states that patients
must be declared dead before the
removal of any vital organs for
transplantation.5 The ad hoc Com-
mittee of the Harvard University
Medical School established “brain
death” as a new criterion for death
in 1968, defined as irreversible coma
with no discernible central nervous
system activity. This notion of
brain death establishes a necessary
prerequisite for selecting potential
donors and provides a concep-
tual basis for medical profession-
als to discuss the donation option.6
Current literature holds that tech-
nology is no longer the rate-limit-
ing factor in organ transplantation.
Rather, it is the ability to obtain or-
gans from suitable donors, which
is limited by the low percentage
of families who consent to dona-
tion.7 In Southeast Asia, the ma-
jor challenges to promoting trans-
plantation rest in the following
areas: an inadequate donor supply,
public willingness (or unwilling-
ness) to donate, and social rather
than medical or technical issues.8
Thailand was chosen for this
case study as an example of a de-
veloping country with both the
technological capacity to perform
36
organ transplantation and a severe
national shortage of donor organs.
Less than 1% of Thai adults are reg-
istered organ donors,9 compared
to the 37% of American adults and
33% of UK adults.10,11 In 2009, only
8.9% of waitlist candidates in Thai-
land actually received organ trans-
plantations from deceased donors.
This research specifically inter-
views transplant professionals in
Bangkok regarding their experi-
ences of requesting consent from
families of brain-dead patients.
This study uses qualitative meth-
ods to better understand Thais’
unwillingness to donate organs
and whether it is possible and appro-
priate for transplant professionals
to change their minds. The major
research question is: What themes
arise as transplant professionals dis-
cuss their perception of the major bar-
riers to organ donation in Thailand?
Methods
This qualitative research case
study investigates the barriers to
organ donation in Thailand. I con-
ducted a series of semi-structured
interviews with mid- to late-career
neurologists, transplant surgeons,
anesthesiologists, nurse anesthe-
tists, and intensive care doctors and
nurses. Twelve of these partici-
pants were employed at public hos-
pitals and six at private hospitals
in Bangkok. This non-randomized
sample size was limited to eighteen
to ensure adequate time to conduct
thorough, thoughtful interviews
with each participant. Individu-
als from these medical specialties
were selected for their presumed
experience in treating potential and
actual organ donors and recipients.
Stanford University’s Institu-
tional Review Board approved the
study. Participants were recruited
by the snowball method of referral
and interviews were conducted in
English. To maintain the consis-
tency of the interviews across the
participants, semi-structured in-
terviews were conducted with the
same core set of open-ended ques-
tions posed to every participant.12
These interviews were audio-
recorded, transcribed verbatim,
and coded in multiple passes in
the grounded theory approach
to qualitative research. An or-
ganized coding chart was con-
structed to increase intra-rat-
er reliability in the consistent
definition and application of codes.
Coded interview data were trian-
gulated with secondary data types—
statistical reports of organ donation
rates, field notes, as well as compar-
ison of the participants’ perceptions
of the laws regulating organ dona-
tion with actual policy. Because
this study was limited to Bangkok,
Thailand’s major urban center, the
conclusions from this research may
not be generalizable to all Thais.
Findings
In order to understand the ques-
tion, “What themes arise when
transplant professionals discuss
their perception of the major bar-
riers to organ donation in Thai-

land?” I first needed to under-
stand the process of transferring
organs from donors to recipients.
As shown in Figure 2, the process
begins when the ICU physicians,
nurses, and neurosurgeons identify
brain-dead patient as a potential
donor. Then, they provide medical
support to preserve the brain-dead
patient’s organs, while providing
emotional support to the patient’s
family. All the time, the physicians
must care for the other, non-brain-
dead patients on the ward. If the
family gives consent to the physi-
cians, the physicians will notify
the Organ Donation Center (ODC)
of the potential donor. The ODC
dispatches the transplant coordi-
nator, who notifies the Neuro team
(typically a neurologist, a neuro-
surgeon, and the director of the
hospital) to declare the patient as
brain dead. If the transplant coor-
dinator determines that the patient
is medically eligible to be an organ
donor, then the ODC activates the
procurement team to recover or-
Flowchart demonstrating the path donated organs follow from donor to recipient.
SJPH: issue 1, volume 1
gans from the patient. The ODC
identifies potential recipients at
various transplant hospitals and
allocates organs to their medical
caregivers. The ODC also activates
the transplantation surgical team
to perform the transplantations.
Natural demarcation of death vs. Arti-
ficial definition of death
The twin concepts of brain death
as the natural demarcation of death
and brain death as an artificial defi-
nition of death illuminate the ten-
sion many participants feel about
the ethics of organ transplantation.
Only a minority of the participants
expressed firm belief that brain
death is equivalent to death of the
whole person, suggesting a bias to-
ward the latter end of this continu-
um. The belief that brain-dead pa-
tients are still alive implies that the
act of organ procurement is the ul-
timate cause of death of the donor-
patients. This violation of the dead
donor rule undermines the ethi-
cal basis of organ transplantation.
External incentives vs. Internal
motivation
The second thematic pair con-
trasts physicians’ internal motiva-
tion to facilitate organ donation
with external incentives for and
against doing so. Internal moti-
vation is significant for those who
believe in the Buddhist notion of
tham bun (making merit, or improv-
ing one’s karma) by way of organ
donation, or recognize the power
of transplantation to improve the
health of transplant recipients. But,
internal motivation may not offset
the lack of external incentives for
facilitating donation, nor overcome
the legal and institutional structures
that discourage such facilitation.
In the absence of institutionalized
protocols encouraging facilitation
of organ donation, physicians must
assume extraordinary risk if they
choose to take on those tasks. They
only have their personal judgment
to guide them through emotionally-
heavy and morally-complex predic-
aments, such as requesting consent
from family members whose loved
one has just died. Participant 25, an
anesthesiologist at a public hospital
said, “If they are crying a lot, then
I don’t think it’s a good time, but
there’s no protocol on that. One has
to use one’s decision when to ap-
proach.” In using “one’s decision
when to approach,” participants re-
port allowing all kinds of medical-
ly-irrelevant factors to determine
whether or not they carry out the
duties necessary to organ donation.
Overburdened ICU physicians vs.
Under-utilized transplant coordinators
Rather than giving credence to re-
ligious objections to organ donation
as a major cause of Thailand’s organ
shortage, the interview participants
pointed to the existence of a “bot-
tleneck” between overburdened
37
INVESTIGATION
ICU physicians and under-utilized
transplant coordinators. The bot-
tleneck manifests itself when ICU
physicians are aware that a patient
is brain dead, but neglects to notify
the procurement agency. Partici-
pant 21, a nurse-transplant coordi-
nator in a public hospital, depends
on that notification in order to start
her duty, “Because if the staff don’t
tell the coordinator about the brain
dead patient we don’t start to ask for
the consent from the family.” The
donation process comes to a halt.
Discussion
Studying the organ donation in
terms of three spectra of themes of-
fers a more comprehensive under-
standing of medical professionals’
roles in facilitating transplantation.
This allows for the design of more
meaningful solutions to Thailand’s
organ shortage. One example of
the potential for policy and edu-
cation to reframe barriers to favor
organ donation is by shifting the
perceived burden of transplanta-
tion tasks from ICU physicians to
transplant coordinators. Currently,
transplant coordinators are under-
utilized in the donation process be-
cause physicians are unwilling to
discharge their brain-dead patients
to an agency whose primary pur-
pose is to procure their organs. In
a way, it constitutes betrayal. Im-
plicit in that sense of betrayal is the
physicians’ lack of confidence in the
ethicality of transplantation due to
the notion that the procurement of
the organs is the ultimate cause of
the death of the brain-dead patient.
Changing physicians’ perceptions
of the brain death definition of
death as a natural and ethical basis
for transplantation will encourage
physicians to carry out transplan-
tation duties without accompany-
ing feelings of guilt and burden.
Conclusion
Recall the case from the Bangkok
Post’s “Gift of Life” article intro-
duced at the beginning of this arti-
cle.1 The mother ultimately decided
to donate her daughter’s heart, kid-
neys, liver, and lungs to the nation-
al procurement agency. She was
informed that the organs would be
immediately distributed to hospi-
tals where patients were awaiting
organ transplants. One life lost;
four saved. The mother told the
Bangkok Post, “I’m happy that I
made the right decision. It was my
daughter’s greatest merit—not only
to save other people’s lives, but also
to spare their families from grief.”1
She said that she has no regrets
donating her daughter’s organs. In
a way, knowing that her daughter’s
organs are still alive in the bodies
of others makes her feel that her
daughter is still present. “For me,
she is still alive. But she has sim-
ply transformed herself into other
bodies. With that knowledge, I’ve
not really lost her,” she said.1 No-
body asked the mother to elimi-
nate her belief in reincarnation.
The mother was able to reframe
her belief in reincarnation in a way
that is consistent with her value
system and favors organ donation.

Lucinda is a senior studying Human Biology at Stanford University. As a part of the Public Service Schol-
ars' Program, Lucinda is writing an honors thesis that is both academically rigorous and useful to public
interest constituencies. After graduation, she will work for 12 months in Southeast Asia as the 2011-
2012 Haas International Public Service Fellow. She hopes to build up healthcare services for Burmese
refugees in Thailand. Lucinda looks forward to medical school and a career in health and human rights.
Outside of class, Lucinda enjoys playing pick-up basketball with friends, improv, and leading creative-
writing workshops for 2nd-graders with the Flying TreeHouse Children's Repertory Theatre Company.

References
1. Trakullertsathien C. The gift of life. Bangkok Post. October 20, 1998:Outlook.
2. Siminoff LA, Gordon N, Hewlett J, Arnold R. Factors influencing families’ consent for donation of solid organs for transplantation. JAMA.
2001;286(1):71-77.
3. Matesantz R, Marazuela R, Dominguez-Gil B, Coll E, Mahillo B, de la Rosa G. The 40 Donors Per Million Population Plan: An Action
Plan for the Improvement of Organ Donation and Transplantation in Spain. Transpl Proc. 2009;41:3453-3456.
4. Wakeford RE, Stepney R. Obstacles to organ donation. Br J Surg. 1989;76(5):435-439.
5. Truog R. The Dead Donor Rule and Organ Transplantation. NEJM. 2008;359(7):674-675.
6. Youngner SJ, Landefeld CS, Coulton CJ, Juknialis BW, Leary M. ‘Brain death’ and organ retrieval: A cross-sectional survey of knowledge
and concepts among health professionals. JAMA. 1989;261(15):2205-2210.
7. Rocheleau CA. Increasing family consent for organ donation: Findings and challenges. Prog Transplant. 2001;11(3):194-200.
8. Hai T, Eastlund T, Chien L, et al. Willingness to donate organs and tissues in Vietnam. J Transpl Coord. 1999;57-63.
9. Thai Red Cross Organ Donation Center. Annual report. Bangkok: 2009.
10. Donate Life America. National Donor Designation Report Card. Richmond, VA: 2010.
11. National Health Service Blood and Transplant. NHSBT Organ Donation Statistics. http://www.organdonation.nhs.uk/ukt/statistics/statis-
tics.jsp. Published 2010. Accessed September 20, 2010.
12. Miles MB, Huberman MA. Qualitative data analysis. Thousand Oaks, CA: SAGE Publications; 1994.

38
 SJPH: issue 1, volume 1
Relation Between Home Environment and Pain
Frequency for Children with Sickle Cell Disease
Catherine Lu
Stanford University, 2014
Abstract
Sickle cell pain in children can lead to missed days of school, depression, and overall decreased qual-
ity of life. Little study of socio-demographic factors as associated with the experience of sickle cell pain episodes
has been completed. Therefore, the objective of this research project was to determine the association between
home environment and frequency of pain episodes requiring heath care utilization for children with SCD. Sixty
children ages 5 to 12 years were recruited from the Sickle Cell Center. Parents provided information on life events
and changes experienced by any member of the family unit in the past year as well as socio-demographic infor-
mation. The children’s pain frequency was obtained from medical records. The study showed that children with
high pain frequency had families with more stressful events (p = 0.03) and had a higher average household size
of 5.4 versus 4.3 (p = 0.04). In addition, 60% of children whose parents had advanced degrees had high pain
frequency versus 16% of children whose parents had a lesser education (p = 0.05). The results of the study can be
used to promote the importance of a better home environment where possible to limit stress for these children.

Introduction
Currently, sickle cell disease (SCD)
is one of the most common genetic
disorders and the most common
genetic blood disorder in the Unit-
ed States, affecting mostly African
Americans and Hispanic races.1 The
most distressing and most common
acute symptom of SCD is pain epi-
sodes, which are bouts of pain last-
ing anywhere from five minutes to
weeks, occurring when the sickle
shaped red-blood cells occlude the
flow of blood in small blood ves-
sels.2 Children are particularly sus-
ceptible to the physical and psycho-
logical side-effects of this genetic
disease since SCD symptoms can
be observed starting at six months
of age and last for the lifetime.3
Previous research has shown that
sickle cell pain in children and ado-
lescents can lead to missed days of
school, depression, anxiety, reduced
social and physical activities, and
overall decreased quality of life. 4, 5
There are many types of SCD
but the four most common are:
Sickle Cell Anemia (SCD-SS), Sickle
Cell Disease-SC (SCD-SC), Sickle
Beta-0 Thalassemia (SCD-Sβ0), and their quality of life and reduce pain
Sickle Beta-+ Thalassemia (SCD- where possible for these children.
Sβ+). These different types of SCD
Normal red blood cell and a sickle cell
have varying levels of intensity;
patients with SS and Sβ0 on aver-
age suffer from 1.0 pain episodes
per year while patients with SC
and Sβ+ have 0.4 pain episodes
per year.6 However, the severity
of the disease for each individual
patient is variable and not entirely
predicted by genotype, suggest-
ing that other factors are involved.
Studies relating frequency of pain
episodes for patients with SCD and
stress have been published, show-
ing that there is a significant rela-
tion between pain in children and
adolescents with SCD and daily
stress.7 However, more study of
socio-demographic factors such as
household density and family in-
come as associated with the expe-
rience of sickle cell pain episodes
is needed. This study addresses National Heart Lung and Blood Institute |
the lack of knowledge about the with permission
association between home envi-
ronment and frequency of pain Methods
episodes for children with SCD. A stressful home environment
Results could be used to improve was defined as family income less

39
INVESTIGATION
Definitions for Categories
than $25,000 per year, high den-
sity household (5 people or more Low Less than $25,000
in the home) or greater than seven

Income
Medium $25,000 - $75,000

Annual
stressful life events in the previous High Over $75,000
12 months. High pain frequency Below high school Did not obtain high school diploma or GED
was defined as two or more pain High school Obtained a high school diploma or GED
episodes requiring health care uti-

Education
Parental
College Obtained an Associate’s or a Bachelor’s degree
lization for two consecutive years.
The child’s medical records were Beyond College Holds an advanced degree (master’s, MD, etc.)
reviewed so that frequency of pain, Low Four or less people in the household at least five
history of stroke, risk of stroke, nights/week
SCD diagnosis and history of acute Household
Density
High Five or more people in the household at least five
chest syndrome could be analyzed
nights/week
as well. Pain frequency was ob-
Low Not classified as high pain frequency
tained from patient medical records
by the counting the annual number High Two pain episodes requiring utilizing health care in any
Freq.
Pain

of clinic, emergency department two consecutive years of the child’s life.

or hospital admissions for pain. Low No history of stroke and not diagnosed with stroke risk
Qualitative data was also collect- High History of stroke (based on clinical records) or
ed in the form of pain diaries giv- diagnosed with stroke risk (based on a transcranial
Stroke

en to the children; they completed

Doppler test)
daily entries about how they were
feeling that day and if they experi- Low No history of ACS (acute chest syndrome)
enced any SCD symptoms. Howev- High At least one episode of acute chest syndrome per year
er, the diary data collection was not for two consecutive years (recurrent acute chest
complete at the time of this study.
ACs

syndrome)
Sixty children from ages 5 to 12 Low Not characterized as high severity
were recruited from the Sickle Cell
Severity

High Has history of stroke, stroke risk, history of ACS,

Center and they and their families
were interviewed on the same day and/or high pain frequency
as their normal check-up at the  
clinic. Most of the participating
children and families live within a Pairwise Correlation
fifty-mile radius of the Sickle Cell Versus All Others Description
Center. The study did not disqual- Child’s ID number Randomly assigned number to each child
ify children based on race, gender, Child’s years of age from 5-12
or other characteristics; only chil-
Child’s gender Male or female
dren who did not have the abil-
Child’s SCD diagnosis SS, SC, Sβ0, Sβ+
ity to go through the interview
because of a serious handicap (e.g. Participating parent’s relation to child mother, father, grandmother, aunt, etc.
severe developmental disability) Household density Number of people home at least 5 nights/wk
were barred from participating. Income category Low, middle, high
The parent who accompanied the Parent marital status Married, divorced/separated, widowed
child filled out two forms. The
Highest parental education Below high school, high school, etc.
first was a socio-demographic
FILE score Out of 71
survey form, which asked ques-
tions including annual income Severity Low, high
and household size. The second Pain frequency Low, high
form was the Family Inventory of Stroke history or stroke risk Yes, no
Life Events and Changes (FILE),8 Acute chest syndrome history Yes, no
a 71-question survey of normative
Stress Low, high
and non-normative life events that
 
40
  
SJPH: issue 1, volume 1
have happened within the past 12 test, as was and parental marital
Participant’s Characteristics
months. The FILE measures fam- status and household density (p =
ily stress in nine areas: intra-family; Gender Female/Male 30/30
0.005). However, parental marital
marital; pregnancy and childbear- Ethnicity Black/African American 58
status was insignificant when cor-
ing; finance; work-family; illness Age Mean (years ± SD) 7.7 related to pain frequency (p = 0.2).
and family care; losses, transitions Diagnosis SS
0
33 Because both the FILE score
in and out; and legal. The overall and household density are sig-
Sβ 7
SC 17
reliability (Cronbach’s alpha) of Sβ+ 7 nificantly correlated with pain
the FILE is 0.81 and the measure Pain Low/High 46/14 frequency, tests were completed
has demonstrated test-retest reli- to see whether either household
Frequency

ability and internal consistency. Family

Pairwise correlation was first
done between all the categories
of data obtained with each other.
Next, multiple Pearson Chi-
square tests were completed to
compare intensity of pain frequen-
cy and SCD diagnosis, income lev-
el, parental marital status, highest
parental education, child’s gender,
and number of stressful events as
reported in the FILE. Fisher’s exact
test was used to give a more accu-
rate p-value when there were fewer
than five observations in a category.
Finally, a two-sample t-test was
done on the same pairs of data as
in the Pearson Chi-square tests af-
ter a variance ratio test was done
to check the assumption of equal
variance. If variances were not
equal, the t-test was corrected us-
ing Satterthwaite’s degrees of
freedom. Alpha was used as the
test of significance to determine
the probability of a type I error.
Income
Low/Middle/High
Parent’s Married/Divorced/Other
Marital
Status
Household
Density
Low/High
FILE Low/High
Score
(stress)
In addition, Total:
high pain frequency
60 children
was associated with higher house-
hold density (p = 0.04; t-test).
The most unexpected result came
from parental education: there was
a significant relationship between
parents who hold advanced de-
grees and higher pain frequency
in their children (p = 0.05; Pearson
Chi-square). Of the 14 children who
had high pain frequency, 21.4% (n
= 3) of them had parents who held
advanced degrees. Compare this to
the 4.3% (n = 2) of parents of the 46
children with low pain frequency.
SCD diagnosis and severity (p
= 0.003) were also significantly re-
lated by the pairwise correlation
19/11/10
density or parental marital status
25/13/9
had a mediator or moderator re-
lationship with pain frequency.
Parental marital status as a me-
28/21
diator between household density
and pain frequency was tested with
21/33
significant outcome (p = 0.05).9
It appears parental marital sta-
tus is a significant moderator in
the relation between household
density affecting pain frequency.
Parental marital status was also
tested as a moderator using the So-
bel test for mediation; the two-tailed
probability shows slight significance
(test statistic = 1.9; p = 0.06; Sobel).
Discussion
There are several results from this
research that match with previous
findings: the correlation between in-
come and parental education,10 the
correlation between SCD diagnosis
and pain frequency,6 and the corre-
lation between stress (as measured
by the FILE) and pain frequency.7

Results   Parental
0.2 (0.1)
Pairs of items such as child’s gen- 0.4 (0.05) Marital Status
der and income category, parental
marital status and child’s SCD di- Household Pain frequency
density
agnosis, and child’s age and highest
parental education versus all other
characteristics were significantly   Parental
unrelated so these variables were Marital Status
not corrected for in further analyses.
Household Pain frequency
High pain frequency was sig- density
nificantly related to a higher num-
ber of stressful events as report-
The relation between parental marital status, household density and pain frequency.
ed by the FILE (p = 0.03; t-test).

41
INVESTIGATION
However, there has not been any
significant effort in determining
the relation between sociodemo-
graphic factors and pain frequency
for children with SCD disease. Any
research done on this is significant
because it can lead to new research
proposals that will determine ex-
act stressors. These results may be
used to improve the home environ-
ment and lessen the frequency of
pain episodes for these children.
Household density was signifi-
cantly correlated with pain fre-
quency in children with SCD. The
next step would be to investigate
household density as a stressor in
and of itself. The test of parental
marital status as a mediator and as
a moderator was an attempt to shed
light on the relationship. Based on
significance, parental marital sta-
tus fits the model of a moderator.
One possible explanation is
the parent’s marital status af-
fects the amount of people a house-
hold can comfortably support.
The most interesting finding was
the significant association between
advanced parental education and
high pain frequency in their chil-
dren. One possible explanation is
that parents with higher levels of
education have a better understand-
ing of the seriousness and implica-
tions of the disease in their children,
transferring their stress to the child.
Income was not associated with
high pain frequency. More uni-
versal factors seem to affect
pain frequency for the children.
Future directions for research in-
clude using a three to five year
longitudinal study to determine
causation. In addition, patient
pain diaries would have added
more depth to the scope of the re-
search since most pain episodes
for patients with SCD are treated
at home. Having a larger sample
of children whose parents hold ad-
vanced degrees would be needed
to establish the link between high
parental education and high pain
frequency in their children. The fu-
ture study should attempt to find
links between holding an advanced
degree and coping strategies of
the adults and children, since re-
search has shown that active cop-
ing strategies is correlated to low
pain frequency.7 Also, the future
study should try to discover the
relationship between household
density and pain frequency for
children with SCD are necessary.
One link to look for is the cor-
relation, if any, between house-
hold density and number of
stressful events in the family unit.
Ultimately, the costs to patients,
families, and society in dimin-
ished quality of life of these chil-
dren could be reduced by refin-
ing strategies to identify those
most vulnerable to stress. Results
from this and future research can
be used to determine which chil-
dren are more at risk for SCD
complications, emphasize the im-
portance of limiting stress where
possible, and promote teaching
active coping strategies to chil-
dren with SCD and their families.

References
1. Management of Sickle Cell Disease (Fourth Edition). National Institutes of Health. National Institutes of Health, National Heart, Lung and
Blood Institute. 2002; NIH Publication No. 02-2117.
2. What is sickle cell anemia. Diseases and Conditions Index Web site. 2008. Available at: http://www.nhlbi.nih.gov/health/dci/Diseases/Sca/
SCA_WhatIs.html. Accessed July 6, 2009.
3. Benjamin J, Dampier D, Jacox A, Odesina V, Phoenix D, Shapiro S, Strafford M, Treadwell M. Guideline for the management of acute and
chronic pain in sickle cell disease. American Pain Society Clinical Practice Guidelines Series. 1999.
4. Brown T. Comprehensive handbook of childhood cancer and sickle cell disease. New York: Oxford University Press. 2006.
5. Gil M, Porter L, Ready J, Workman E, Sedway J, Anthony K. Pain in children and adolescents with sickle cell disease: an analysis of daily
pain diaries. Children’s Health Care. 2000;29:225-241.
6. Platt O, Thorington B, Brambilla D, Milner P, Rosse W, Vichinsky E, Kinney T. Pain in sickle cell disease. The New England Journal of Medi-
cine. 1991;325:11-16.
7. Gil K, Carson W, Porter S, Ready J, Valrie C, Redding-Lallinger R, Daeshner C. Daily stress and mood and their association with pain,
health-care use, and school activity in adolescents with sickle cell disease. Journal of Pediatric Psychology. 2003;28:363-373.
8. McCubbin I, Thompson I, McCubbin A. Family assessment: Resiliency, coping and adaptation: Inventories for research and Practice. Madi-
son, WI: University of Wisconsin Publishers. 1996.
9. Baron R, Kenny D. The moderator–mediator variable distinction in social psychological research: conceptual, strategic, and statistical con-
siderations. Journal of Personality and Social Psychology. 1986;51:1173-1182.
10. Crissey R. Educational attainment in the United States: 2007. US Census Bureau Population Report 2009. 2009.
11. Bennett S. Depression among children with chronic medical problems: a meta-analysis. Journal of Pediatric Psychology. 1994;19:149-69.
12. Benton D, Ifeagwu J, Smith-Whitley K. Anxiety and depression in children and adolescents with sickle cell disease. Curr Psychiatry.
2007;9:114-121.
13. Treadwell M, Alkon A, Quirolo K, Boyce T. Reactivity to stress and impact of illness in children with sickle cell disease. 2009. (Under
review)

42
 SJPH: issue 1, volume 1

Genetically Modified Mosquitoes

May Stop Spread of Dengue Fever
Nairi Strauch
writer
Jennifer Jenks
research review
F rom the tropical savannas of
Sub-Saharan Africa to the islands
of Southeast Asia, the dengue virus
affects the lives of millions around
the world. Transmitted primarily
through the bites of pathogen-car-
rying mosquitoes Aedes aegypti and
Aedes albopictus, dengue infection
is a leading cause of morbidity in
the tropics and subtropics. It poses
a serious threat to nearly 2.5 bil-
lion people globally – two-fifths of
the world’s population.1 The World
Health Organization estimates
that as many as 100 million people
are infected every year through
transmission by mosquitoes.2
First documented in the 1950s,
the disease is now endemic in more
than 100 countries and the number
of cases is increasing as the disease
spreads to new areas. Symptoms of
dengue virus infection include fe-
ver, headache, skin rashes, and mus-
cle and joint pains. The disease can
Centers for Disease Control and Prevention | with permission
progress to life-threatening compli-
The dengue virus, seen in shaded areas, is prevalent in the tropical savannas of Sub-Saharan
cations such as dengue hemorrhag- Africa, Southeast Asia, Central America and northern South America.
ic fever (DHF), where capillaries
become excessively permeable and measures, such as the treatment of ising techniques today: genetic
cause abdominal pain, hemorrhage, water around homes and the use modification of Aedes mosquitoes.
and potentially circulatory col- of insecticides and mosquito nets, One of the leaders in this re-
lapse. DHF affects mostly children, have been mostly ineffective. How- search is Dr. Anthony James, dis-
and without proper treatment, ever, in the last few decades, experts tinguished Professor of Microbiol-
DHF fatality rates can exceed 20%.1 in microbiology and immunology ogy & Molecular Genetics at the
There are currently no licensed have made innovative advances in University of California, Irvine’s
vaccines to prevent infection with preventing the spread of dengue School of Medicine. Currently, Dr.
dengue virus, and other preventive leading to one of the most prom- James and his team are exploring

43
INVESTIGATION
genetic manipulation in Aedes mos-
quitoes as a cost-effective preventa-
tive method for dengue. They are
taking two primary approaches to
reduce dengue car-
riers using genetic
to what it was before.” Studies of
these field suppression approaches
have already been initiated in Ma-
laysia and the Cayman Islands.4
However, these self-limiting
approaches are ultimately un-
The more sustainable approach is
population replacement, in which
mosquitoes are engineered to be
resistant to the dengue virus and
then are introduced into a wild
population. When the modified

“ Perhaps the greatest chal-

modification: pop- sustainable. Because the lab mosquitoes mate with the wild
ulation suppres- mosquitoes, the modified genes
sion and popula- are passed onto future genera-
tion replacement. tions, eventually altering the ge-
JAMES The population lenge to this work is gain- netic character of the population
suppression strat- ing social acceptance for to make them dengue-resistant.
egy aims to reduce the source pool the use of genetically According to Dr. James, although
of dengue by limiting the mosquito these technologies are sustain-
modified insects. Because
population. One method used to able, they are “much more com-
achieve such reduction involves it is impossible to gain plicated in the sense that they
increasing the death rate of wild the individual consent of leave a genetic residue out there
mosquitoes. In this approach, mos- every member affected by in the population.” Introducing
quitoes are genetically engineered a modified variant of a naturally
in a lab to become lethal to their
this public health measure, occurring species may have off-
own kind. When released into the social issues of consent and target effects, and the full impact
wild, these insects mate with the authorization become su- cannot be entirely understood.
wild mosquitoes and kill them, Scientists are currently working
decreasing the number of disease-
carrying wild mosquitoes and
premely significant.
” to incorporate design features that
increase efficacy and ensure safety.
therefore decreasing the chance of mosquitoes only affect the imme- They are making a large effort to
transmission. Another technique diate growth of the wild mosquito ensure that these genes have very
to reduce the number of disease population, this method cannot limited or no potential for moving
carriers is to genetically modify account for the migration of car- outside of the species for which
male mosquitoes to be sterile, re- rier mosquitoes back into the area. they are targeted. Additional pre-
ducing the total number of fertil-
ized mosquito eggs in the wild.3
The primary advantage to the
population suppression approach
is its built-in safety mechanism.
Because these mosquitoes do not
produce offspring with the wild
mosquitoes, there is no chance of
introducing modified genes into
wild mosquito populations. As Dr.
James explains, “When people are
anxious about genetic control, they
understand that if you put some-
thing out there that isn’t designed
to survive, then maybe that’s a
good thing.” Additionally there is
no evidence to suggest that remov-
al of mosquitoes would have a sig-
nificant impact on the ecosystem.
In fact, the mosquito removal may Muhammad Mahdi Karim | with permission
be “an aspect of bio-remediation The Aedes aegypti mosquito is one of two carriers of the dengue virus and is a target for
and bringing the local system back genetic modification research efforts to stop the spread of this tropic disease.

44

cautions aim to avoid increasing
the mosquitoes’ ability to carry
another target pathogen. Says Dr.
James, “for example, if you put in
something that knocks down the
ability of the insect to support den-
gue viruses, do you have an impact
on yellow fever?” Further research
is also examining the impact on in-
secticide resistance. Labeling the
mosquitoes with fluorescence may
also make them readily distinguish-
able from the wild population.2
Furthermore, the population re-
“ [Dengue
placement approach must work
in a reasonable time frame. To
have a relevant impact on the en-
SJPH: issue 1, volume 1
standards for community consent,
community involvement, to cir-
cumstances, where it’s less clear
how that would actually work?”
Scientists will need to collaborate
with public health leaders to edu-
cate them on the effects of this pro-
tective measure to ensure that these
leaders can make an informed deci-
sion. Researchers will also need to
work with the local communities
fever] poses a
serious threat to nearly
2.5 billion people globally
– two-fifths of the world’s
much to be learned. The use of ge-
netically modified mosquitoes to
suppress the population of wild
mosquitoes or modify their dis-
ease-carrying characteristics over
time could prove to be a solution,
and may improve the lives of mil-
lions. Dr. James notes, “Personal
gratification comes from being able
to use the things that I was trained
in to offer something to humanity.”
Efforts from researchers like Dr.
James could be essential in reducing
the morbidity and mortality caused
by the most rapidly spreading mos-
quito-borne disease in the world.

vironment, the genes must spread
rapidly through the population.
“You don’t want to put a gene out
there and have to wait ten thou-
sand years,” explains Dr. James.
Perhaps the greatest challenge
to this work is gaining social ac-
ceptance for the use of genetically
modified insects. Because it is im-
possible to gain the individual con-
sent of every member affected by
this public health measure, social
issues of consent and authorization
become supremely significant. Says
Dr. James, “the question is, how do
we work toward developing world
”
population.1
*The authors would like to
thank Dr. Anthony James for
in these developing countries with contributing valuable insights
populations of low literacy, a proj- in the role of genetically modi-
ect that is difficult but essential. To- fied mosquitoes in hindering
day, even in the scientific commu- the spread of dengue fever.
nity, the future use of genetically
modified mosquitoes is not entirely
accepted. “We know there are a
lot of people uncomfortable with
what we’re doing,” explains James.
“So my challenge is ‘All right,
come up with something better!’”
Research to prevent transmission
of dengue is ongoing, and there is

References
1. Dengue and dengue haemorrhagic fever. World Health Organization. 2009. Available at: http://www.who.int/mediacentre/factsheets/
fs117/en/index.html. Accessed April 28, 2011.
2. Dengue. Centers for Disease Control and Prevention. 2011. Available at: http://www.cdc.gov/Dengue/. Accessed April 28, 2011.
3. Mosquito wars. (2009). Bulletin of the World Health Organization [serial online]. 2011;87(3). Available at: http://www.who.int/bulletin/
volumes/87/3/09-020309/en/. Accessed April 28, 2011.
4. Enserik M. GM mosquito release in Malaysia surprises opponents and scientists–again. ScienceInsider. 2011. Available at: http://news.
sciencemag.org/scienceinsider/2011/01/gm-mosquito-release-in-malaysia.html?. Accessed April 28,2011.

45
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