[House Hearing, 118 Congress]
[From the U.S. Government Publishing Office]
MEETING THE CHALLENGES OF GLOBAL BRAIN
HEALTH: DIAGNOSIS AND TREATMENT FOR
THE 21ST CENTURY
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HEARING
BEFORE THE
SUBCOMMITTEE ON GLOBAL HEALTH, GLOBAL
HUMAN RIGHTS AND INTERNATIONAL ORGANIZA-
TIONS
OF THE
COMMITTEE ON FOREIGN AFFAIRS
U.S. HOUSE OF REPRESENTATIVES
ONE HUNDRED EIGHTEENTH CONGRESS
SECOND SESSION
__________
November 20, 2024
__________
Serial No. 118-136
__________
Printed for the use of the Committee on Foreign Affairs
[GRAPHIC NOT AVAILABLE IN TIFF FORMAT]
Available: http://www.foreignaffairs.house.gov/, http://docs.house.gov,
or http://www.govinfo.gov
__________
U.S. GOVERNMENT PUBLISHING OFFICE
63-407 PDF WASHINGTON : 2026
=======================================================================
COMMITTEE ON FOREIGN AFFAIRS
MICHAEL T. McCAUL, Texas, Chairman
CHRISTOPHER H. SMITH, New Jersey GREGORY MEEKS, New York, Ranking
JOE WILSON, South Carolina Member
SCOTT PERRY, Pennsylvania BRAD SHERMAN, California
DARRELL ISSA, California GERALD E. CONNOLLY, Virginia
ANN WAGNER, Missouri WILLIAM KEATING, Massachusetts
BRIAN MAST, Florida AMI BERA, California
TIM BURCHETT, Tennessee JOAQUIN CASTRO, Texas
MARK E. GREEN, Tennessee DINA TITUS, Nevada
ANDY BARR, Kentucky TED LIEU, California
RONNY JACKSON, Texas SUSAN WILD, Pennsylvania
YOUNG KIM, California DEAN PHILLIPS, Minnesota
MARIA ELVIRA SALAZAR, Florida COLIN ALLRED, Texas
BILL HUIZENGA, Michigan ANDY KIM, New Jersey
AUMUA AMATA COLEMAN RADEWAGEN, SARA JACOBS, California
American Samoa KATHY MANNING, North Carolina
FRENCH HILL, Arkansas SHEILA CHERFILUS-McCORMICK,
WARREN DAVIDSON, Ohio Florida
JIM BAIRD, Indiana GREG STANTON, Arizona
MICHAEL WALTZ, Florida MADELEINE DEAN, Pennsylvania
THOMAS KEAN, JR., New Jersey JARED MOSKOWITZ, Florida
MICHAEL LAWLER, New York JONATHAN JACKSON, Illinois
CORY MILLS, Florida SYDNEY KAMLAGER-DOVE, California
RICH McCORMICK, Georgia JIM COSTA, California
NATHANIEL MORAN, Texas JASON CROW, Colorado
JOHN JAMES, Michigan KWEISI MFUME, Maryland
KEITH SELF, Texas BRAD SCHNEIDER, Illinois
RYAN K. ZINKE, Montana
JAMES C. MOYLAN, Guam
Brendan Shields, Majority Staff Director
Sophia Lafargue, Minority Staff Director
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SUBCOMMITTEE ON GLOBAL HEALTH, GLOBAL HUMAN RIGHTS AND INTERNATIONAL
ORGANIZATIONS
CHRISTOPHER SMITH, New Jersey, Chairman
MARIA SALAZAR, Florida SUSAN WILD, Pennsylvania, Ranking
AMATA RADEWAGEN, American Samoa Member
FRENCH HILL, Arkansas AMI BERA, California
RICH MCCORMICK, Georgia SARA JACOBS, California
JOHN JAMES, Michigan KATHY MANNING, North Carolina
C O N T E N T S
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REPRESENTATIVES
Page
Opening Statement of Subcommittee Chairman Christopher H. Smith.. 1
Opening Statement of Representative Ami Bera..................... 4
WITNESSES
Statement of Gladys E. Maestre, M.D., Ph.D., Director,
Alzheimer's Disease Resource Center for Minority Aging
Research, University Of Texas.................................. 6
Prepared Statement............................................. 8
Statement of Benjamin C. Warf, M.D., Chairman, Neurokids......... 17
Prepared Statement............................................. 19
Andy Shih, Ph.D., Chief Science Officer, Autism Speaks........... 23
Prepared Statement............................................. 26
Statement of Yashodhara Rana, Ph.D., Associate Director of
Research, Eleanor Crook Foundation............................. 29
Prepared Statement............................................. 31
APPENDIX
Hearing Notice................................................... 52
Hearing Minutes.................................................. 54
Hearing Attendance............................................... 55
Materials for the Record
Alzheimer's Assoc. and Alzheimer's Impact Movement Statement,
submitted by Rep. Smith........................................ 56
Statement for the record, submitted by Rep. Susan Wild........... 62
Questions for the Record
Questions submitted to Andy Shih by Rep. Smith................... 66
Questions submitted to Benjamin C. Warf by Rep. Smith............ 68
Questions submitted to Gladys E. Maestre by Rep. Smith........... 73
Questions submitted to Gladys E. Maestre by Rep. McCormick....... 78
MEETING THE CHALLENGES OF GLOBAL BRAIN HEALTH: DIAGNOSIS AND TREATMENT
FOR THE 21ST CENTURY
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Wednesday, November 20, 2024
House of Representatives,
Subcommittee on Global Health, Global Human Rights,
and International Organizations,
Committee on Foreign Affairs,
Washington, DC.
The subcommittee met, pursuant to notice, at 2:30 p.m., in
room 2172, Rayburn House Office Building, Hon. Christopher H.
Smith (chairman of the subcommittee) presiding.
OPENING STATEMENT OF CHAIRMAN CHRISTOPHER H. SMITH
Mr. Smith. Good afternoon. The subcommittee hearing of the
Global Health, Global Human Rights, and International
Organizations will come to order. And first let me apologize
for the lateness. I was on the floor along with Kathy Manning
with a couple of bills that she sponsored and one that I
sponsored, so I do apologize and it just finished, so please
accept my apologies. And thank you so very, very much for being
here.
Without objection, the chair is authorized to declare a
recess at any point and all members will have 5 days to submit
statements, extraneous material, and questions for the record,
subject to the length limitations of the rules. I note the
presence of a quorum and I now recognize myself for an opening
statement.
Today, we turn our attention to the vitally important issue
of global brain health with the specific focus of Alzheimer's
disease, autism spectrum disorders, and hydrocephalus. Global
brain health is critically neglected. The United States is the
leader in health assistance globally with foreign assistance
that has saved millions of lives through programs that target
malaria, HIV/AIDS, tuberculosis, and many, many other diseases
and infectious diseases as well. But comparatively, brain
health is overlooked and misunderstood.
A major new study shows that more than three billion people
worldwide live with a neurological condition. Neurological
conditions are the leading cause of poor health and disability
globally. I would note parenthetically that my wife deals with
a very rare disease that is known as Marfan's disease. It has
to do with brain encephalitis. She is doing very well
overcoming it, but it is everywhere and it is not being, I
don't think, adequately addressed on a global scale at least by
our Government.
As life expectancy grows and healthcare costs rise,
policymakers must consider the looming health crisis of brain
diseases and disorders, especially in low-and middle-income
countries. I have introduced my bill, the Global Brain Health
Bill in Congress after Congress after Congress and have not
been able to get it passed, but I am absolutely determined that
in the next Congress we will see it come to fruition.
Take Alzheimer's disease. Alzheimer's is the most common
form of dementia, usually affecting persons aged 60 and older.
As we all know, it is degenerative, irreversible, and a
terrible disease that progressively corrodes the brain's
memory, thinking, and reasoning skills. Currently over 55
million people worldwide live with a form of dementia and 60
percent of those are in developing countries. With life
expectancy on the rise, a tsunami of Alzheimer's cases is on
the global horizon. In 2011, when I chaired the very first
congressional hearing on the topic of the global crisis of
Alzheimer's disease, projections estimated at 80 million people
would get Alzheimer's or another form of dementia by 2050. In
2015, the projection was revised to a whopping to 115 million.
Today, Alzheimer's Disease International estimates 139
million cases of dementia by 2050 and again, things are getting
worse, not better. This increase will be felt more drastically
in the low-and middle-income countries as populations grow
rapidly and life expectancy, good news story, lengthen.
One recent study found that dementia cases in Sub-Saharan
African will grow by over 300 percent. Low-and middle-income
countries will struggle to manage this health challenge due to
a small and untrained health workforce and inadequate and
inaccessible care.
Little public awareness and health professional training on
the signs and symptoms of Alzheimer's pose a challenge. A
global study by Alzheimer's Disease International found that
over two-thirds of people incorrectly think that Alzheimer's
and other forms of dementia are just normal parts of aging. As
the co-founder and co-chair of the congressional Alzheimer's
Task Force, Ed Markey and I formed it back in the year 2000. We
have maintained--I have maintained and we have maintained for
over a decade that the administration of both parties must pay
more careful attention to this mounting crisis. Yes, we have
provided more money to NIH. There has been a quadrupling of
funding for research and that is absolutely welcome, but more
needs to be done, again, on the international level.
I also co-chair the congressional Autism Caucus which I
founded in 1999 and I authored the Autism Statistics
Surveillance Research and Epidemiology Act, a bill to authorize
grants and contracts for the collection, analysis, and
reporting of data on autism and pervasive developmental
disabilities and establish regional centers of excellence in
autism and epidemiology. Passed as part of the Child Health Act
in 2000, it was offered as an amendment by yours truly, this
provided the basis for future iterations of autism legislation
including the Autism Cares Act.
Earlier this year, the House passed my bill, H.R. 7213, the
Autism Cares Act of 2024 and I am happy to say after it was
blocked in the Senate, that block seems to have been lifted and
maybe as early as tonight they may unanimous consent the bill,
both sides through the hotline procedure, have agreed to it, so
it will become law. And it is a substantial, not only
reiteration of current policy and reauthorization, but an
expansion as well.
About 1 in 100 children all around the world it is
estimated have autism, a spectrum disorder marked by degrees of
difficulty with social interaction and communication. While
research and care for autism has improved in wealthier
countries, such as the U.S. and including chronically how many,
it is seriously neglected in much of the developing world. For
many living in low-income countries, care is often
inaccessible. I will never forget I had a mother was from Cote
d'Ivoire at one of my hearings on global autism and she
testified and said I couldn't get any help for my son until she
moved and migrated to Ohio and then received a plethora of very
good intervention and her son was performing and doing very
well. There was autism in their family. They were off often
socially isolated and stigmatized. Some communities attribute
autism to witchcraft which is horrible.
The United States can play a vital role in supporting
developing countries and addressing autism spectrum disorders
by raising awareness, developing culturally appropriate
screening tools, and training parents, teachers, and healthcare
professionals on interventions so as to improve the lives of
individuals with autism.
Last Congress, I also introduced the Global Autism Act
which would establish a program within USAID. I hope to update
that and reintroduce that in the next Congress and hopefully we
will have some success there.
Finally, our third very important topic of discussion will
be on the issue of hydrocephalus. Hydrocephalus is a condition
where fluid buildup in the brain leads to swelling of the head
and serious brain damage that often ends in death.
Hydrocephalus is a tragically common childhood condition. There
are nearly half a million cases annually and perhaps many, many
more. The most precious gifts in our society, our emphasis on
children are the most vulnerable when it comes to hydrocephalus
and yet this condition also affects our elderly.
Once again, hydrocephalus plagues infants in the developing
countries and again we have a man here today who, Dr. Benjamin
Warf, who has been before our committee before, who developed
an amazing procedure that has been applied in Uganda and
throughout Africa that doesn't require a stent. It has
revolutionized the effort. And I will never forget, we had a
few of the doctors that he worked with, including indigenous
Ugandans, who testified via remote as well as in person and
they said when the moms got their kids back and the pain, as
well, is mitigated and ended through this, the flow of tears
was just almost unimaginable.
So Dr. Warf, you have been a lifesaver. You all have been.
But you have been a lifesaver when it comes to hydrocephalus
and we thank you. I thank you. We all thank you for the great
work you have done.
I will introduce our very, very fine group of individuals
in a moment, but I would like to yield to Dr. Bera for any
comments you may have.
OPENING STATEMENT OF REPRESENTATIVE AMI BERA
Mr. Bera. Thank you, Mr. Chairman. And I know the Ranking
Member, Ms. Wild, is tied up as Ranking Member in the Ethics
Committee and will join us as soon as she can. She has got an
opening statement.
But again, thank you for holding this hearing on an
incredibly important topic.
I am going to focus mostly on Alzheimer's disease with
regards to brain health. As the chairman pointed out, the
number of people living with Alzheimer's disease and dementia
is projected to triple from over 55 million people today to
more than 152 million by 2050. The cost of Alzheimer's disease
and dementia to the global economy is $1.3 trillion in 2019 and
it will continue to grow exponentially in the coming years as
demographic transitions lead to an aging global population.
And while the U.S. Government has increased the domestic
R&D budget on Alzheimer's at the NIH by tenfold over the last
decade from $400 million to $4 billion, there is currently no
funding for global Alzheimer's and dementia programs at the
global level. So as a doctor, I have seen acutely and as an
internist, I am acutely aware of how Alzheimer's disease and
dementia affect not only the patient, but also the impact it
has on the caregivers and the family and disproportionally in
cases affect the female population.
In our district, we have held nine annual brain health
forums working with our local Alzheimer's association to
provide our constituents with information and resources on the
latest Alzheimer's research and what is available to them to
assist caregivers and persons living with Alzheimer's or other
dementias. That said, however, nearly all Alzheimer's research
has been conducted on Caucasian populations of lesser European
origin leaving out 90 percent of the world which has
significantly limited progress.
That is why today I introduced the bipartisan Global
Alzheimer's Initiative Now, or the GAIN Act, alongside my co-
leads, Representative Brian Fitzpatrick and Young Kim. The GAIN
Act will authorize U.S. participation in and contributions to
the Davos Alzheimer's Collaborative. The Davos Alzheimer's
Collaborative, or DAC, was launched in 2021 as the first global
alliance of governments, nonprofits, academia, and the private
sector driving efforts to combat Alzheimer's disease. DAC aims
to invest over $700 million over 6 years to link, scale, and
build on existing efforts across every sector, and foster an
innovative ecosystem to coordinate and accelerate the pace of
innovation and Alzheimer's disease research and care and to
improve brain health globally to achieve equitable and
accessible healthcare.
It is critical at this time that we leverage U.S. resources
to most effectively combat the step saving disease for our
constituents, their families and individuals impacted by
Alzheimer's disease and dementia around the world. I look
forward to hearing testimony and again, thank you for holding
this hearing. I yield back.
Mr. Smith. It is now my honor to introduce our very
distinguished witnesses beginning with Dr. Gladys Maestre who
is the Director of the Rio Grande Valley Alzheimer's Disease
Resource Center for Minority Aging Research. She is a
physician, scientist, who has devoted much of her professional
life to Alzheimer's research in low-resource settings. Her
research has explored cultural, educational, and genetic risks
for Alzheimer's disease and cognitive decline, as well as
cognitive function and health among minorities and ethnically
diverse populations. Dr. Maestre was also the Co-Director of
the South Texas Alzheimer's Disease Resource Center where she
focuses on personalized medicine's approaches to improve
prevention, treatment, and care for patients with Alzheimer's
disease and related dementia.
Dr. Benjamin Warf is the founding Chairman of NeuroKids, a
nonprofit organization established in the year 2020 that exists
to help children with hydrocephalus and spina bifida in low-
resource countries. Dr. Warf is also a Professor of Neurology
at Harvard Medical School and Director of Neonatal and
Congenital Anomalies Neurosurgery at Boston Children's
Hospital. He served as Chief Pediatric Neurosurgery and
Director of Surgical Education at the University of Kentucky
Medical Center in 2000 when he and his wife and six children
moved to Uganda as a medical missionary with Cure International
to be the founding medical director of a pediatric neurosurgery
specialty hospital. While there, Dr. Warf developed and
validated a new endoscopic neurosurgical procedure to treat
infant hydrocephalus known as ETV/CPC and I will leave it to
you to say what that stands for. He is also the first to
identify neonatal infection as the most common cause of infant
hydrocephalus in East Africa. And again, has been before this
committee several times and has been amazing with the
leadership he has provided.
Dr. Andy Shih is the Chief Science Officer at Autism
Speaks, an organization we work very closely with on the Autism
Caucus and I want to thank him. Dr. Shih has led important
advancements toward the organization's mission including the
development of several large international research consortia
that delivered high impact scientific outcomes for the
community. He was essential to the 2008 passage of the World
Autism Awareness Day Resolution at the U.N. and subsequently
led to the development of the Global Autism Public Health
Initiative that provides technical support to country
governments to enhance autism awareness advocacy and services
worldwide. His leadership at Autism Speaks supports ministries,
governments, agencies, and leading non-government organizations
in more than 70 countries to deliver better outcomes. And of
course, we all remember when G20 adapted a very, very
monumental and you played such a role in it, to have a change
in direction to come up with something that will ameliorate
autism by 2025. It was a very, very important pivot and it
helped us, all of us in countries and governments around the
world to focus additional resources saying we have a target
date, let's try to achieve it.
And then we have Dr. Yashodhara Rana, who serves as the
Associate Director for Research at the Eleanor Crook
Foundation. In this role, Dr. Rana oversees ECF's multi-million
dollar portfolio of grants in maternal and child nutrition and
provides thorough leadership both to the ECF team and its
community of partners. She is currently a member of the Power
of Nutrition Technical Advisory Group and serves as a member of
the Editorial Board of Maternal and Child Nutrition Journal.
Prior to ECF, Dr. Rana was Associate Director at the
Results for Development overseeing a nutrition team's data and
learning practices. There, Dr. Rana led DataDENT, a 5-year
initiative aimed at strengthening the nutrition data value
chain and informing the African Development Bank's nutrition
strategy in costing and financial analyses.
Thank you all for being here. The testimony you will
provide will be incredibly useful going forward as well as
starting today. Dr. Maestre.
STATEMENT OF GLADYS E. MAESTRE
Dr. Maestre. Chairman Smith, Ranking Member Wild, and I am
pretty sure she is going to look at this, Dr. Bera,
distinguished members of this committee, it is an honor to
testify before you today. To harness the promise of science to
mitigate the suffering of the millions experiencing Alzheimer's
dementia across the globe, we need to advance scientific
knowledge, but also design the infrastructure and resources
required to make this promise a reality.
A comprehensive, cohesive global agenda will allow our
Nation to leverage the momentum that the national plan to
address Alzheimer's Disease Act, known as NAPA, and the
Alzheimers Accountability and Investment Act have facilitated.
This bill was recently reauthorized with unanimous support in
Congress. We are grateful to you, Chairman Smith, and all
Members of the Congress who have championed and continue to
support this bill, and Dr. Bera, for that initiative.
As a result of these investments, seminal advances were
made in diagnosing and treating Alzheimer's disease. For
example, we now know that Alzheimer's begins 20 years or
earlier before memory loss or other symptoms develop. And in an
unprecedented move, the FDA approved two treatments that can
modify some changes in the brain of Alzheimer's dementia
patients.
We are moving toward incorporating biomarker detection for
Alzheimer's disease into routine preventive health care. Even
though many aspects still needs to be clarified, we can now
detect brain changes in vivo by measuring cerebrospinal fluid
and plasma molecules. We refer to these molecules as biomarkers
and they may function similarly to prostrate specific antigens,
PSAs, where elevated levels from further assessments to rule
out disease.
Our global brain health agenda needs to be cohesive and
should take advantage of the momentum and consider the
following facts. First, Africa, the most genetically diverse
continent, offers a vast, yet under utilized resource for
studying how genetic and environmental factors contribute to
chronic and infectious diseases. While the African diaspora in
the U.S. is growing, it represents a fraction of the genetic
diversity found on the continent.
Second, the risk factors affecting every brain disease vary
across ethnic groups due to genetic and cultural differences.
However, most studies focus on European populations, limiting
their applicability to other groups. For instance, ApoE, the
most common genetic risk factor for Alzheimer's in Europeans,
has minimal impact on African Americans or Hispanics.
Third, without the knowledge of disease etiology in the
ancestral source populations, our ability to fully address the
needs of African Americans who are also experiencing a rising
life expectancy remains limited.
China and the U.S. compete for a strategic influence in
Africa and Latin America, includes U.S. investment in health
research and infrastructure offers a strategic, cost effective
way to counter China's advance and rebuild trust in the global
south. One example of this that we have done in Latin America
is the Maracaibo Aging Study in Venezuela. Despite efforts to
move from programs, projects, to a cohesive strategy, brain
health, especially Alzheimer's, still lacks a clear, global
agenda.
I urge you to consider a global strategy to advance
Alzheimer's research that benefits all people in America and it
strengthens the U.S. position in African and all lower-income
regions. This approach may leverage NIH funded programs that
combine research training with community engagement such as the
Resource Centers for Minority Aging Research, the RCMAR, and
the Alzheimer's Disease Research Centers, ADRCs, and the
Diversity Centers for Genomic Research.
Partnership with Alzheimer's Associations and other patient
advocacy groups, as well as professional societies like the
Gerontological Society of America are instrumental in
implementing a concerted agenda.
Finally, we must develop a pipeline of experts in both
brain health and foreign affairs. With over 250 North American
universities offering global health education, we have the
means to do that.
Thank you very much for the opportunity to testify today. I
look forward to answering any questions you may have.
[The prepared statement of Dr. Maestre follows:]
[GRAPHIC NOT AVAILABLE IN TIFF FORMAT]
Mr. Smith. Thank you very much, Doctor, and your very, very
lengthy and scholarly testimony will be made a part of the
record and any other extraneous material you want to include in
the record. Dr. Warf.
STATEMENT OF BENJAMIN C. WARF
Dr. Warf. Thank you, Mr. Chairman and Dr. Bera and other
members that will be listening. Thank you for this invitation.
It is an honor as always. And thank you, Mr. Chairman, in
particular, for your commitment and support over the last many
years now. It is very valuable and very much appreciated.
Hydrocephalus is a common childhood condition that can be
devastating or even fatal. The good news is that it is
treatable. The bad news is that children in much of the world
either get sub-optimal treatment or no treatment at all. The
normal brain contains fluid-filled spaces called ventricles
that communicate with the fluid space outside the brain.
Anything that disrupts this circulation can cause a fluid
called CSF, or cerebral spinal fluid, to accumulate within the
ventricles which then enlarge under pressure. That is
hydrocephalus. There are many causes of hydrocephalus. Some
cases are congenital. And others are secondary to another
condition.
In resource-poor countries, the two most common causes are
neonatal infection and neural tube defects, commonly referred
to as spina bifida. Together, these account for about two
thirds of all causes of hydrocephalus in the developing world.
Thus, a great deal of hydrocephalus could be prevented by
reducing the incidents of newborn infections and spina bifida.
Hydrocephalus is the most common condition treated by pediatric
neurosurgeons, with close to one half million new cases per
year. But it is tragically most common among those children who
have the least access to treatment. The incidence of congenital
hydrocephalus is highest in Africa and Latin America and it is
lowest in the United States and Canada.
When you include cases related to neonatal infection and
neural tube defects, the annual case volume in resource-poor
countries is more than 20 times that for high-income countries.
Three quarters of the world's case volume of childhood
hydrocephalus can be found in Latin America, Africa, and
Southeast Asia.
Infant hydrocephalus, whatever its cause, results in
expansion of the brain's ventricles which stretch and compress
the surrounding brain tissue causing mechanical injury and
decreased blood flow. The head enlarges dramatically and the
child suffers from progressive symptoms and about half will die
without treatment within 2 years. Survivors typically have
severe neurocognitive disabilities and spasticity and
blindness. Untreated hydrocephalus is also costly. The
estimated annual economic burden of untreated infant
hydrocephalus in Sub-Saharan Africa is between 1.4 and 56
billion U.S. dollars per year using the value of a statistical
life method. The estimated benefit-to-cost ratio for treatment
is more than seven to one which is more than some of the other
interventions that are more commonly performed.
The standard and most widely practiced treatment for infant
hydrocephalus is to implant a tube called a shunt, that allows
CSF to escape from the brain's ventricles to the abdominal
cavity, but 60 percent of shunts will have failed at least once
within in the first 4 years and the risk of failure which can
be life threatening never ends. A minimally invasive endoscopic
brain operation caused ETV/CPC which stands for endoscopic
third ventriculostomy and choroid plexus cauterization, which
is why we call it ETV/CPC, can permanently treat infant
hydrocephalus without the need for a shunt in around two out of
three infants and has been shown at least as effective and safe
as shunts and with a far lower risk of infection. But unlike
shunts that can fail repeatedly over a lifetime, virtually no
ETV/CPC treatment failures will occur after the first 6 months.
It is notable that this procedure was originally developed
and validated in Uganda with the support of funding from both
USAID and NIH. Its subsequent adoption by major pediatric
centers here in the U.S. demonstrates how Federal funding of
projects abroad can benefit U.S. citizens.
Countries with the highest volume of hydrocephalus have the
fewest neurosurgeons with around 330 pediatric neurosurgeons
caring for a population of 1.2 billion children in low-resource
countries where shunt dependence is more dangerous. Children
with shunt failure and no access to emergency surgery often
die. Therefore, training and equipping these neurosurgeons to
perform this procedure will substantially reduce the number of
shunts placed and save lives while also reducing the number of
repeated shunt operations on an overburdened neurosurgical
workforce.
NeuroKids is a nonprofit organization that uniquely focuses
on training and equipping these neurosurgeons to perform ETV/
CPC using a combination of onsite training in their home
institution and subsequent remote mentoring that employs
virtual presence technology during surgery. We prioritize
partnerships with neurosurgeons in high volume referral centers
and subsequently leverage their training by adding them to our
growing international team of neurosurgical mentors.
NeuroKids currently works with partner sites in 13
countries of Latin America, Africa, the Middle East, and
Southeast Asia.
In conclusion, more funding is needed to accelerate the
elimination of untreated pediatric hydrocephalus and to
minimize life threatening shunt dependence in low-resource
countries, thus savings the lives of countless children. As
well, public health strategies that reduce neonatal infection
and neural tube defects would substantially reduce the number
of children throughout the world who are affected by this
condition.
Thank you again for the opportunity of being here.
[The prepared statement of Dr. Warf follows:]
[GRAPHIC NOT AVAILABLE IN TIFF FORMAT]
Mr. Smith. Thank you, Dr. Warf. Thank you so very much for
your leadership and being here. Dr. Shih.
STATEMENT OF ANDY SHIH
Mr. Shih. Thank you, Chairman Smith, Ranking Member Wild,
and distinguished--all distinguished member of the subcommittee
for inviting me to testify and for holding this important
hearing.
I am Dr. Andy Shih, Chief Science Officer at Autism Speaks,
a national and not-for-profit organization dedicated to
creating an inclusive word for people with autism through their
life-span. We do this through advocacy, services, supports,
research and innovation, and advances in care.
In addition to the work we engage in domestically, Autism
Speaks has been committed for many years to developing and
implementing strategies and programs that positively impact the
lives of people with autism, other developmental disability
around the world. The primary vehicle for this has been our
Global Autism Public Health Initiative, also known as GAPH.
GAPH is a community participatory research and advocacy
programs where, in addition to facilitating high-impact science
to inform program and policy development, we serve as technical
advisors to governments and NGO's committed to enhancing
support for our community. We help source expertise, support
community-based knowledge co-production, and facilitate
dissemination and implementation of sustainable solutions.
What we've learned from our many years of work in this
space and throughout our Autism Leadership Network, a
distinguished group of leading international autism advocates
that Autism Speaks has supported for over a decade, is that
there are some absolutely incredible individuals and
organizations working in countries across the globe to raise
awareness of autism and increase service--access to services.
These are truly some of the most remarkable caring people you
will ever meet, who often work with extremely limited resources
in difficult political climates. What we've also learned is
that while these advocates have made a significant impact, have
only scratched the surface in terms of building the awareness
and acceptance of autism and infrastructure for services that
needed around the globe to meet the needs of autistic people.
Much of the work has engaged internationally involve--
involving working directly with community organizations. Last
year we had the opportunity to collaborate with the World
Health Organization and UNICEF on a first-of-its-kind report,
the Global Report on Children with Developmental Disability.
This report provides a comprehensive perspective on the
prevalence and characteristic of children with developmental
disability globally and serve as a call to action for all
nations.
Like to focus on a few of the findings and recommendation
from this report. I think they are helpful for informing our
conversation today. First, the report note that there are an
estimated 317 million children and adolescents worldwide that
have health condition that contribute to developmental
disabilities and 95 percent have no access to appropriate care
at all. Children and adolescents with developmental disability
are at increased risk of mental health conditions and premature
death due to illnesses such as obesity, diabetes, heart and
respiratory diseases. Their needs are largely neglected and
they continue to experience stigmatization, prejudice,
institutionalization and barriers to participation, as well as
social, economic, educational, and other forms exclusion and
barriers in access health care along with poorer quality of
care when compare with their peers. This result in widespread
inequities in terms of health outcomes, and tragically,
premature mortality for many people with developmental
disabilities.
Despite the depth of these challenges, this report provide
hopes and a path forward. The overarching objective of this
report is to take action for change. Children with
developmental disability and their families have long been
neglected to the margins, and that has to change. That has to
change now. This report maps out 10 action area to accelerate
change in policies and care system for children and young
people with developmental disabilities. I encourage all member
of the subcommittee to read through them.
One key takeaway from the report is that improving health
outcome for those children must involve a holistic approach. To
truly make progress institutional barriers to care must be
addressed and the same time more personalized approaches must
be utilized to address each child's individual needs.
To accomplish this one approach known as the stepped-care
model is being increasingly recognized as an efficient and
effective way to build tier system of care for children with
developmental disabilities. This approach involve making
available care options of varying levels of intensity linked
through defined care systems.
Recently Autism Speak implemented the stepped-care approach
by supporting UNICEF pilot that focus on early identification
and intervention for children with developmental delays in
three countries: Bulgaria, Peru, and Uganda, as part of Care
for Child Development Initiative. The work being done in these
countries is already having a substantial impact, and the
Global Report on Children with Developmental Disabilities will
continue to serve as a rallying point as well as a road map to
make progress around the world.
Last, while millions of people with developmental
disability around the world still struggle to access
appropriate care--health care, like to acknowledge the progress
that has been made in the development of tools to improve
autism diagnosis. Autism Speaks support the development of two
freely available tools: the Open Source Screening and
Diagnostic tool, which is called OSSDx, for autism spectrum
disorder, and the Nigerian Autism Screening Questionnaire. The
ability to reliably screen and diagnose autism is critical in
determining the most appropriate level of care for autistic
children. High-quality screening tools like these are necessary
to address the challenge and improving diagnosis and
intervention.
Chairman Smith, throughout your career you have been an
incredible champion for autistic people, not just here in the
United States, but around the world. If passed, the Global
Autism Act that you have previously proposed would be a
tremendous step in the right direction in helping to address
the--some of the challenges I've mentioned today. I am grateful
to you for inviting me to testify at this particular hearing
where we're focused on neglected aspect of public health.
People with autism and other developmental disability around
the world have tragically been neglected for many years across
the very system--across every system of care. As I said
earlier, the time for change is now. I look forward to working
with you and all members of subcommittee to making that change.
Thank you again. I look forward to your questions.
[The prepared statement of Mr. Shih follows:]
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Mr. Smith. Mr. Shih, thank you so very much and thank you
for the great work Autism--I mean, geez, I just--for the great
work that you have done at Autism Speaks. It is just
incredible. Matter of fact, in 2005, when the Autism bill was
going to die because of House inaction, it was Autism Speaks
that saved it. And so I will never forget that. So deeply
appreciate it.
Mr. Shih. Thank you, Chairman Smith.
Mr. Smith. Let me now turn to Dr. Rana for your comments.
STATEMENT OF YASHODHARA RANA
Ms. Rana. Chairman Smith, Ranking Member Wild,
Representative Manning, thank you for the opportunity to
discuss the critical role of combating malnutrition and
promoting global brain health. Thank you to Chairman Smith and
Ranking Member Wild for your leadership in the fight against
child malnutrition.
I serve as the Associate Director of Research at the
Eleanor Crook Foundation, or ECF, a U.S.-based philanthropy
solely focused on ending malnutrition. I manage a multi-million
dollar portfolio of grants that is focused on child and
maternal nutrition.
Today I will summarize my written statement in three key
points: First, malnutrition is harming the brain health of
children worldwide. Second, the crisis of malnutrition is
detrimental not only to children and their families, but entire
nations and economies. And third, malnutrition is a solvable
crisis. We have cost-effective solutions ready to be scaled
today.
To my first point, malnutrition is a leading cause of child
death and children who survive face stunted growth and
cognitive impairment. As we all know, brain development begins
during pregnancy. By the 4th week a fetus has 10,000 brain
cells and by the 24th week this number expands to 10 billion.
In fact, by age three a brain--a child's brain is about 80
percent the size of an adult's brain.
The importance of proper nutrition during these early years
cannot be overstated. Malnourished mothers are more likely to
give birth to children who are too small or born too soon and
these vulnerable babies are likely to have worse
neurodevelopment and cognitive outcomes and also are at a
serious risk of illness, and even death.
This brings me to my second point, the harmful effects of
malnutrition on brain health extend beyond individuals to
entire nations and economies. As President Adesina of the
African Development Bank frequently says, the greatest
contributor to economic growth is not physical infrastructure;
it's brain power, what he calls as gray matter infrastructure.
Individuals who face childhood hunger earn 10 percent less over
their life times and are 33 percent less likely to escape
poverty. The economic cost is huge. Malnutrition is estimated
to result in an annual productivity loss of up to $3 trillion.
But for all these dire statistics there is hope, which
brings me to my third point. Proven cost-effective solutions to
malnutrition exist and are ready to be scaled up. Take the
solution of prenatal multivitamins for pregnant women that you
can see here, which we call as MMS. This complete prenatal
vitamin is considered as one of the best buys in global health.
It not only protects the health of the mother, but it also
prevents kids from being born too early or born too small. And
we have studies showing that babies born too small have lower
IQs than their counterparts.
On a personal note, when I had my two pregnancies here in
the United States I took a prenatal multiple-vitamin just like
MMS because I knew I wanted my children to have the best start
in life and I could access these supplements. But in low and
middle-income countries where the prevalence of malnutrition is
much higher, pregnant women only get two nutrients: iron and
folic acid.
Another cost-effective solution is breastfeeding. Breast
milk is nature's superfood that protects--and that protects
children's brain health. And it also protects the health of
mothers and babies, yet only 41 percent of kids worldwide are
exclusively breastfed. When breastfeeding moms are supported
they're twice as likely to continue to breastfeeding their
children.
Finally, despite global efforts to improve children's diet,
there are still families that are still not able to meet the
nutritional needs of infants. A food-based supplement here that
I'm showing designed--is designed specifically for vulnerable
children and it's called SQ-LNS. It's proven to save lives.
It's proven to prevent malnutrition. And it contains the
recommended intake of micronutrients as well as protein.
I want to end my remarks by talking about the impact of
U.S. leadership. The U.S. has historically been the largest
donor in the fight against malnutrition. My birth country of
Nepal offers a notable example of the benefits of this
leadership.
In 1995 Nepal had the highest stunting rate in the world.
Seven out of ten children had delayed growth. But over the past
20 years, with strong government leadership, policies, and
donor support, specifically USAID's Nutrition Program,
Suaahara, Nepal has reduced stunting by half. And thanks to
U.S. Government leadership we've seen a historic surge in
treatment for children with severe acute malnutrition. In 2023,
an estimated 1.2 million children's lives were saved because of
this treatment.
This success highlights the critical role of bipartisan
congressional support, but UNICEF recently reported that one in
four children today is living in severe food poverty. That
means 181 million children do not have the equal opportunity to
grow, develop, and learn. That means 181 million minds are at
risk of being wasted. It is not easy to comprehend a number so
huge, but I urge you to remember that every one of that
callosal figure stands for a child, a child who deserves to
have ambitions and who, with the right nutrition and care, can
grow and prosper. We know that progress is possible, and now we
must stand--we must stay the course.
Thank you and I look forward to your questions.
[The prepared statement of Ms. Rana follows:]
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Mr. Smith. Thank you so very much, Dr. Rana, for your
testimony and leadership.
Just a few opening questions: First of all, your
testimoneys are--just answer many of the questions that all of
us might have had, so that is deeply appreciated.
With regards to the 2013 G8 Summit that was held of course
for--trying to find a disease-modifying or a cure for
Alzheimer's, I wonder if you could speak to how well or poorly
we are doing on that time line. NAPA did help us, and that was
a total bipartisan effort, to have a strategy to quadruple the
amount of money that is going toward--most of it to NIH in the
area of Alzheimer's research, but if you could speak to--as
2025 rolls around--and of course the SDGs also speaks to health
in a variety of ways, including in the dementia realm. If you
could speak to that.
Second, I would say and ask Dr. Warf, when you testified in
the past, not only have you pioneered and helped save countless
lives with your intervention, the non-stunt intervention, you
had spoken of the effort to train Ugandans and Africans at Cure
International and other initiatives to be the neurologists, to
be the surgeons, to be the brain health experts. And I am
wondering if you could update us on how well that might be
doing, whether or not it needs a major push.
And any estimate on how many--I mean, I remember you showed
us pictures of kids in Uganda who--before and after, after
their--unfortunately the fact that their brains had so swelled
up and the after pictures with their parents with smiles from
ear to ear because they had been cured. If you could speak to
that.
And again, further elaborate briefly if you would on the
issue of the infection-based, because we had a lot of people--I
chair the Spina Bifida Caucus as well here in the House and it
is completely different. We know interventions in utero can
help mitigate the impact of spina bifida, but you pointed out;
and you had experts to verify, this was infections-based.
Because I went and spoke, as I do every time--Samantha Power,
Mark Green, all the USAID administrators are all wonderful
people. They always say, well, we are dealing with infectious
diseases. They do not want to cross that line into global brain
health.
That is why my bill has failed at the launching pad every
year. It is not going to fail this coming year, and your
testimoneys and your help will help make that happen. I mean,
why aren't we doing this? And so many people are so mal-
affected by it. Yes, HHS does some good work, but it is mostly
in the realm of diplomacy, health diplomacy, not funding
projects, NGO's and the like to take all of the global brain
health initiatives on.
With Regards to autism, just a brief little story: I was in
Abuja and then went over to Lagos in the year 2000. It was on a
combating human trafficking trip. And I spoke to about 500
people and a man came up and he says what are you doing about
autism here? Nothing. So I went and had lunch with him,
breakfast as you would say, and we had a great meeting. And I
know you guys do a great work internationally and I thank you
for that. But again, we need to make sure that our government
is doing more, which is why this initiative I think just has to
be--and I do think we can succeed.
And, Dr. Rana, if I could with you, I am a great believe in
the first 1,000 days from conception to the second birthday.
Food nutrition for the mom so that both mother and baby are as
healthy as humanly possible. And we do know that folic acid--
and this has come out of the research pursuant to the Autism
Cares work and the--that folic acid can, if taken very early in
the pregnancy or by a woman of reproductive age as she becomes
pregnant--it greatly reduces autism. Greatly reduces it. And so
the more of that initiative: ours and the U.N.'s and others,
can be shared with everybody, the better.
But first 1,000 days. I remember I was in Guatemala the day
they announced their cooperation with a first 1,000 days
initiative, because they have a stunting problem, as does
Nigeria and so many other places. And it works. Mother's
healthier. Baby's healthier. I mean, it is the most crucial
time health-wise in any of our lives and it seems to me that we
need to be doing more.
We have the Global Food Security Act. I was the House
sponsor. Got it passed twice. Went over to the Senate. It came
back as a Senate bill. Who cares. It is a good bill. But are we
doing enough when it comes to global food security? If you
could speak to that.
And you did mention folic acid, but--and thank you for
bringing some of the other things that are so important. But if
you could also--your presence here, your testimoneys, it will
be the gist of a brand new, all-out effort to get the Global
Brain Health Initiative enacted into law and to get as much by
executive branch policy as possible, but also by statute. So I
do ask you, if you could, speak to those issues as--and
anything else you think we need to touch on.
Gladys?
Dr. Maestre. Thank you, Chairman Smith, for your question
and your insights. So you asked me about the treatment and
advances and how close are we to cure. And I have to elaborate
a little bit on this. We didn't know the situation was so
complex for the brain as the brain ages. So we thought we were
going to have a patient with memory loss and dementia and that
we were going to be able to treat it just like that.
But we learned that it takes 20 years or more to get to the
point of memory loss and other cognitive changes. So it takes
20 years. So we are now looking forward to therapeutics that
will begin early enough to really stop the progression to the
disease. That's our hope.
With the current medications which have been approved by
FDA, they are--they do work taking out of the brain one of the
proteins that deposit--that is deposited in the brain, that
accumulates in the brain of people with dementia, which is the
beta-amyloid. So they do work. They are monoclonal antibodies.
They get to the amyloid and they clean it. So if--but if there
is too much amyloid already, then there are going to be already
other changes in the brain like neuron death, deposition of
other things. So it's not enough to cause a clinical
improvement. Not too much. It delays few months, but not--it's
not a cure. Are we closer? Yes. Are we there? No.
So we are hoping that we are going to develop similar
techniques and that we are going to develop strategies for
different elements in the brain of people already with dementia
enough to at least stop the progression and maybe reverse. But
what we are really hoping is to--once that we have the
capability now to detect earlier before the symptoms appear
that we are going to be able to develop therapeutics to stop
right there, preventing the onset of the disease.
Dr. Warf. My turn. So I'll try to address each of the--each
of your categories of questions.
So first of all, you asked about, Mr. Chairman, the
progress in training surgeons. And so the last time that I was
here in this place was in 2011. And at the time we had a
training program onsite in the hospital that we started in
Uganda where we brought neurosurgeons from other countries,
developing countries to train them there in this technique for
a period of time and then sent them back home. All right?
And using--through that program we actually trained
neurosurgeons in about 30 different countries.
There were challenges though with that and one of those was
that we were taking sometimes the only neurosurgeon in the--in
that region and taking them away from their practice for two or
3 months for training. They were being trained in an
environment that was unlike the one they were going back to and
treating a different population of children, and sometimes
there were obstacles to implementing their training when they
got home.
The pandemic sort of made us appreciate the role of remote
presence teaching and technology. And around that time we
founded NeuroKids, which has a different paradigm of training.
In this way we identified partner neurosurgeons in needy
places, high-volume centers that are seeing a lot of
hydrocephalus. And we have a Zoom-based pre-site visit
protocol. We do then a site visit and do hands-on
interoperative training.
And then after the trainer goes back, what we're able to do
is continue to mentor that surgeon through remote presence
technology. For instance, I can sit at my desk in Boston and in
real time with the screen, the video endoscope screen on my
computer I can talk to the surgeon, take them through what
they're doing. I can telestrate on the screen. They can see
that. And so we can virtually be there in the operating room
with them. And that continues their training over a few months
thereafter.
In the last couple of years we've been able to train in a
number of sites in different countries, not just in Sub-Saharan
Africa, but also South America, Southeast Asia. And by the end
of this year we will have close to 20 different sites.
And the strengths--one of the strengths of this program is
that we aim to train trainers. And so the person that we train,
once they're competent, we support their mentoring and training
of other surgeons in the region. So that's--that helps us to
scale this kind of work.
In regard to the folate question, I won't speak a lot on
that, but simply to say that because spina bifida/neural tube
defects is a major cause of hydrocephalus, preventing that is
very important. And if--when there is adequate folate
supplementation or fortification of the grain supply, that has
the potential to reduce the incidence of spina bifida in a
country by about two--down to two-thirds of what it is. So it
can make a significant impact on that condition.
And then finally in regard to the infectious origins of
hydrocephalus, the pathogen causing that is largely unknown in
most places in the world. Over the course of about the past 10
years and quite a bit of NIH funding we finally were able to
identify, with the appropriate experts--not me--but we were
able to, with leadership of Steve Schiff in particular,
identify a new human pathogen that was actually causing the
post-infectious hydrocephalus in Eastern Uganda to a bacteria
called Paenibacillus. And that hadn't been known to be a
pathogen in humans.
And so the next stage will be learning how to better treat
and prevent that particular infection, but we have no illusions
that that's what's causing these infections elsewhere. And so
what's needed is similar research programs to identify what's
causing the infections in the neonates in other parts of the
world.
And then finally, one of the important interventions is a
simple public health intervention around perinatal care. In
Uganda, for instance, most of the children were born at home in
the village without professional help. They're in an
environment where they're constantly exposed to mud and animal
dung. One of the practices was to place animal dung on the cut
umbilical stump to staunch the bleeding after the baby was
born.
And so there are a lot of sort of simple things that could
be done, but on a big scale in terms of advancing basic public
health measures to prevent neonatal infection, which in low-
income countries neonatal infections are very, very common. We
don't have that kind of burden here in the U.S. That's really a
condition of poverty.
Here in the U.S. one of the most common causes of
hydrocephalus, if not the most common, is hemorrhage in the
brain in prematurely born babies that are preserved and
supported in our NICUs. That's a condition, post-hemorrhagic
hydrocephalus of prematurity, which is really a condition of
prosperity you might say. We don't see that in the developing
world because those children, those prematurely born babies
don't survive.
Yes, so I think hopefully that covers some of your
questions. Thank you.
Mr. Smith. Mr, Shih?
Mr. Shih. Thank you, Chairman Smith. I just wanted sum up
some reflection here. I think one the last previous time that I
testify in front of the committee may be almost 10 years ago
now. I remember that time we focus on conversation around
awareness and inclusion of our community.
Part of the reason we did that is because there were no
tools, right, and programs and policy that could really
facilitate the inclusion of our community in society and system
of care.
But now that we have. I mention in my testimony about this
diagnostic screening tool that we develop, like Nigerian autism
screening tool and the OS--open-source diagnostic tool that we
develop Sub-Saharan Africa, as well as the Care giver Skill
Training Program, Early Intervention Program develop at WHO.
They're now available globally. So is no longer a question of
what to do, but how quickly can we do it, right? We have the
tools now. We have the resources to make things--to make a
change happen. So it's become a implementation problem. And
that's why with U.S. leadership I think we can greatly
accelerate the implementation process and bring a better
tomorrow to all of our community around the world. Thank you,
Chairman Smith.
Ms. Rana. Thank you for the question, Chairman Smith. I
just wanted to start by appreciating both the chair and ranking
member for passing the Global Malnutrition Prevention and
Treatment Act and for really codifying the approach of focusing
on evidence-based cost-effective interventions.
in my testimony I mentioned U.S. leadership in scaling
treatment for severe malnutrition, which you all might now more
commonly as Plumpy'nut, or RUTF. Because of bipartisan support
from Congress and USAID, RUTF was accessed by nearly 9.3
million children, saving 1.2 million lives in 2023.
And I'm sharing this success story as a proof that when we
focus on high-impact cost-effective solutions and become razor-
focused impact is possible.
And this is what we're to do with these improved prenatal
supplements. They also contain folic acid. But the case is we
have a solution but we still need to figure out how deliver it.
And the challenges can be multiple. Women not taking--women not
coming to antenatal care on time; so the folic acid is not
taken in the early stages of pregnancy, it's not going to work
the magic that we need to. Women could be coming to antenatal
care, but not be able to afford or access these prenatal
supplements. They might not be getting counseled on the
importance of these supplements and there could also be
misconception or other adherence-related issues.
So we have a solution, but there is still a lot of work to
be done in order to deliver it to get to impact. For this
reason our foundation along with three other philanthropies has
developed a road map for how we can reach women in the 45 high-
burden countries with these improved prenatal supplements.
So over the next 6 years with an investment of 1.1 million
we aim to reach nearly 260 million women with these improved
prenatal supplements which has the potential to save nearly
600,000 lives and prevent 5 million vulnerable births. And
these births are at risk for also having impaired brain health.
Thank you.
Mr. Smith. Thank you.
Ms. Manning?
Ms. Manning. Thank you.
Thank you to my good friend, Chairman Chris Smith and also
to my friend--my good friend Susan Wild, who is in another
meeting right now. It has been a real honor to work with you on
this subcommittee. Let me just say how much I will miss this
work in the future.
To our witnesses, thank you so much for your testimony
today. You have given us wonderful examples of what can be done
to help prevent or treat devastating brain and health issues
with the right tools, training, and resources from the U.S.
So, Dr. Warf, I want to ask you a question first. The
President-elect plans to establish a Department of Government
Efficiency to cut government spending. Do you believe that cuts
to medical research should be on the table and would reducing
funding to entities like NIH, CDC, CMS, HHS hurt efforts to
find the kinds of tools you have described or cures for
diseases--cures or treatments I should say for diseases like
Alzheimer's?
Dr. Warf. Well, thank you for that question. I of course
think that reducing support for the entities that you describe
would be harmful to the health of children in most of the
world. I also think; and this is partly in reference to what my
colleague to the right of me here pointed out, in my opinion,
for what's worth, when the U.S. invests in helping other people
in other countries, we show our best side. And I think few
things could be more valuable to diplomacy, not that I know
anything about that. But that's my humble opinion as I think--I
think we need to show our best, which is caring about the rest
of the world and being willing to invest and help them, because
it--in a sense, if we want to look at it from a selfish way,
that does come back to help us as well.
Ms. Manning. Thank you for that.
Dr. Maestre, would you like to comment on that as well?
Dr. Maestre. Sure. Thank you very much, Representative
Manning, for coming here today and for these thoughtful
questions.
I like efficiency. I like to do things better. So I can
only be hopeful that the advantages of research and aid will
come up. So I don't think that it's--I hope, right, that the
funding will only keep increasing and being redirected to the
needs and where we have a chance to be more impactful.
Alzheimer's disease without doubt we are at a moment where we
need to take advantage of where we are and what we can do at
the global level.
Ms. Manning. So in 2023, the NIH announced $3 million in
funding for Alzheimer's research, a collaboration between the
U.S. and countries in Africa. Can you share just a little bit
about what the impact of funding for programs like that can do?
Dr. Maestre. The main success is that we have access to
resources that we don't have in our Nation, and that's at
least--to mention one of them is DNA, the diversity, the
genetic and genomic diversity that we don't have. So and this
implies that we have access to cures, to targets that we don't
have now. And that--it's the leadership that we need in the
world. We need to have access to resources in ways that we can
use them right away. Because we have the technology, we have
the infrastructure, and we have the desire.
I also want to mention that we have, I think, a secret
weapon which is not a secret, which is the African American
scientists. I think they are very eager to work even more with
African scientists and the African communities. So I think that
we have a lot of pieces to really accelerate the discoveries
that we need to bring back home, but also to make stronger
partnerships in Africa and in other low and middle-income
countries. Thank you.
Mr. Manning. Dr. Shih, the President-elect's nominee to be
the Secretary of Health and Human Services, Robert F. Kennedy,
Jr., said in a 2023 Fox News interview the following: He said,
I do believe that autism does come from vaccines. As a doctor
do you agree with him?
Mr. Shih. Thank you for that question, Representative
Manning. So there have been numerous studies that have been
done, both in the U.S. and around the world to look at the
causal link between autism and vaccine, and today there has
been no established evidence that link the two, vaccination
with autism. So it is a settled scientific question.
Ms. Manning. I am sorry. Can you say that Again, please?
Mr. Shih. It's a settled scientific question for the
research community.
Ms. Manning. That vaccines do not cause autism?
Mr. Shih. That's correct.
Ms. Manning. Are you at all concerned about the potential
head of HHS who might hold these views?
Mr. Shih. We have worked successfully with both parties
over the years to advance the interests of our community, the
well-being of our community, and we strongly believe that we'll
be able to continue to.
Ms. Manning. I have heard some discussion about the fact
that people believe that autism is on the rise. You described I
think in your testimony some of the tools' better ability to
diagnose autism. So do you believe autism on the rise or is
there--are we better able to diagnose autism which gives higher
numbers?
Mr. Shih. So certainly we're diagnosing autism more than
ever before in history. And certainly part of the reason that
we're able to do that has been the improvement in knowledge,
right, and awareness, efficacy of clinicians, and so on, the
tools that we have to assist in these processes. But I think
there's still uncertainties. We know that autism is the result
of genetic environmental factors interaction. We have some
understanding of the genetic factors that are at play. We're
beginning to understand what environmental factors are at play.
So I think over time we'll have a better understanding on what
are all the factor that are really contributing to this
condition.
Ms. Manning. And when you say over time, will it just occur
or would investment in more research be helpful?
Mr. Shih. Absolutely investment in more research.
Ms. Manning. Thank you. Individuals with autism are far
more likely than their peers to suffer from social isolation,
exclusion, mental health conditions such as depression and
anxiety. How can we help first of all reduce the stigmas around
autism, but second try to address some of those issues?
Mr. Shih. Yes, that's a excellent question. So I think
first of all awareness, right? And not only about awareness of
autism, but really advocating for acceptance and understanding
of autism I think is crucial to make progress in the particular
area.
And I think the second thing is to really try to create
accommodations for autistic people and their loved ones on our
community so they can be actively intentionally included in
family life and in social life and so on and so forth.
Ms. Manning. And gainfully employed?
Mr. Shih. Absolutely. That is so crucial, right? Because
with--by addressing all these social determinants that can lead
to better health we can actually improve the well-being and
outcome of our community overall.
Ms. Manning. Wonderful. I have a question from my colleague
who won't be able to make it here. Dr. Shih, in your written
testimony you highlighted your collaboration with the World
Health Organization and UNICEF to help publish the first Global
Report on Children with Developmental Disabilities. How
important are multilateral institutions including the WHO and
UNICEF in supporting global autism and health research
initiatives?
Mr. Shih. I think it's very important because obviously as
an organization we're limited in our reach and ability to
influence programs and policy, but by collaborating with
multinational organization like WHO UNICEF it allows us to
expand our reach and further disseminate sustainable solution
to community in need.
Ms. Manning. Thank you.
Dr. Rana, Thank you for holding up some of those very small
packages of items that can have just a huge impact on the
health of children and the nutrition for families. Can you tell
us what aspects of U.S. global nutrition assistance programs
have proven the most effective, and also which have proven the
least effective?
Ms. Rana. Thank you, Representative Manning, for your
question. The ones that have proven most effective in my
perspective had been the ones that have focused on cost-
effective solutions. having a razor-focus on really upping the
coverage of these interventions that we know works. It's a
tragedy that we have these solutions but we haven't still
figured out how to scale them at high coverage so that every
woman everywhere and babies are able to access them.
On what has not worked is a question I'd like to followup
with a written response because I haven't seen the entire
portfolio of programs and it wouldn't be right for me right now
make a comment beyond that.
Ms. Manning. Thank you. I think that would be helpful
because we do talk about wanting to make sure that we are
putting our efforts in the right place. And I agree we want to
be efficient and effective. So sometimes it is important not to
just know what does work, but what is not working, what we
should stop doing so that we can devote our resources to the
things that are working.
And I had another question here. Dr. Rana, how can global
health partnerships help feed children with neurodevelopmental
needs in malnutrition-prone regions? How can we be partnering?
We had a bill on the floor that we were discussing earlier
today about the war in Sudan and how 14 million people have
been impacted by that war, either relocated or put in
devastating circumstances where they are at risk of
malnutrition. How can we be partnering to address some of the
nutritional needs that are going to be--that are affecting
people in such difficult circumstances?
Ms. Rana. Thank you again for that thoughtful question,
Representative Manning, especially as there are multiple
crisises worldwide that are happening simultaneously. And the
people who bear the biggest brunt are pregnant women and young
children, what you, Chairman Smith, called precious to our
society.
We have again these cost-effective solutions. If you look
at the packet of ready-to-use therapeutic food, it is
specifically for kids who are severely malnourished. Given
their condition, taking a normal meal is not going to be easy
for them and so this provides them with the required nutrition
for their treatment.
SQ-LNS, that I talked about, is also from a prevention
angle of how do we get kids early on before they get too
wasted? And similarly for pregnant women we are talking about
solutions like prenatal vitamins that are more holistic. But
also in some cases when women are very undernourished we are
looking at supplements for lactating and pregnant women also.
So there are solutions that are feasible, that are possible.
But then the challenge again is financing. How do we
finance given the scale at which these crisises are happening
and how do we reach these populations, which some of the U.N.
agencies like UNICEF and WFP--they have baskets of food and
services for both pregnant and vulnerable populations.
Ms. Manning. Thank you. Well, let me just thank you all for
the really important work you do. Thank you for being here
today. My sister specializes in treating Alzheimer's patients
at the UVA Medical School, so I am well aware of how
devastating Alzheimer's can be for patients and families, how
desperate they are for treatments that work either to arrest or
prevent the disease from developing.
So I hope we continue to invest in the research and the
great organizations and great researchers who can provide
solutions and treatments for all of the diseases that we have
been talking about today and that we continue to share our
knowledges and our resources with the areas of the world that
are most prone to having these problems where our small amount
of help can provide an enormous benefit.
And not only do we help them, but, Dr. Warf, as you
suggested, it also helps us in our standing in a world where
there is great power competition right now and it is a good
effective way for us to build friends and alliances. So thank
you.
With that, I yield back.
Mr. Smith. Thank you very much.
If I could just recognized Scott Badesch, who is now on my
staff. Ten years as president of Autism Society and has been
very helpful and as we write this new bill with all of the
groups.
And, Stewart, great to see you again as always. We miss you
already.
He just retired in September. Did a wonderful job in the
Autism CARES legislation.
And I want to thank you especially for that.
But as we go forward, this is going to be an all-out push
and I think we can succeed. I mean, your testimoneys, but your
work, your life work is so important. You have saved so many
lives and can enhance the lives of so many others. They have
improved the quality of life. It is just extraordinary. So
thank you for that.
I do have just one brief question to Dr. Shih about the--I
remember when thimerosal was all the rage. Of course that has
been out of our immunizations for quite some time. And some
people still cling to that, but it is not there anymore, so how
can you be suffering from that and contributing to autism?
And one of my first amendments I offered here as a new
second-term Member of Congress was to provide $50 million for
the Child Survival Fund. It passed; it became law. And it was
for one of the pillars of the Child Survival Fund was
immunizations. And I actually traveled to El Salvador, and many
Central American countries and African countries later, but for
Days of Tranquility, when the FMLN were fighting against
Duarte's government and they would stop all fighting to
immunize the children against diphtheria, polio, pertussis, the
leading killers of children. So I do believe there is an
absolute important role to be played.
But there is an argument made; and I would appreciate your
thoughts on this, that if too many vaccinations are given at
once that that could have a negative impact, maybe contributing
to autism, but could have a negative impact on that child
because of the absorption capacity of a very young child. If
you get five immunizations at once, what does that do? So
spreading them out might be a wise and prudent course of action
for mothers. Just wondering what your thoughts are on that. Get
the vaccination, but spread it out?
Mr. Shih. Right. Whether or not it's vaccination, just
spread it out. So this has been an issue in the community, as
you know, for a couple of decades now. Certainly there's no
evidence that suggests that having receiving multiple doses of
vaccines a day isleads to autism or associative autism.
My understanding is that the developing child are able to
tolerate this kind of vaccine schedule, right? And we have seen
through history this is not a new program that's introduced.
It's been around for decades and we certainly have not seen the
evidence that this kind of vaccine schedule actually lead to
significant harm for children's health.
Mr. Smith. I appreciate that.
Let me just conclude. My hope is that your testimoneys, the
work you have done builds on a renewed call to action to the
incoming administration to really take on global brain health.
And we will do it by way of legislation. I do think we can get
it passed this time. I have already spoken to some of the
leadership including the Speaker about this. This is an idea
whose time has come to quote, or paraphrase Victor Hugo. And
you have been doing it. You all have been doing it. And we just
need to do even more to make sure that USAID and not just HHS
through diplomacy is embracing this achievable goal. So I want
to thank you so much.
Anything else you wanted to add now or by way of written
submissions? Please, yes, Gladys?
Dr. Maestre. Thank you very much, Chair Smith. I wanted to
reaffirm some of the comments you made. I have been devoted all
my life to international work, not only because I come from
Venezuela and that Imy work has been in Africa and Latin
America, but because now I work at the University of Texas, Rio
Grande Valley, which is located in Brownsville, Texas. This is
10 minutes from the Rio Grande, from the river and 40 minutes
from SpaceX.
Many of my patients and participants, when I talk to them,
they mention the adversity of human trafficking in their lives.
At least I would say that 20 to 25 percent of the women that I
see as Alzheimer patients have been subjected to this type of
abuse. And I wanted to lay that out because I think that the
social determinants of health that we are experiencing in the
border are many--in many ways related to what's happening in
low and middle-income countries, the lack of access and the new
opportunities that we have now to bring together issues which
you have led for many, many years. And now we can envision a
global health strategy with these diseases and these
strategies, but also too that will benefit not only low and
middle-income countries, but low-resource settings like the Rio
Grande Valley in South Texas.
Mr. Smith. Thank you for that. Are you suggesting trauma-
induced Alzheimer's?
Dr. Maestre. We----
Mr. Smith. Is it because of beatings or because of sexual
assault?
Dr. Maestre. We believe that adversity of that level
Mr. Smith. Right.
Dr. Maestre [continuing]. Is increased vulnerability of the
brain to confront aging and to develop a healthy life.
Mr. Smith. Thank you for that. That bears us really
focusing on that.
Just for the record, I am the author of the Frederick
Douglass Trafficking Victims Prevention Act. Passed the House
in February; still pending in the Senate. It is probably going
to die in the dustbin called the U.S. Senate. It just kills me
that it is just sitting there. And I have been calling. I have
been asking. And it looks like it is going to die in the next 3
weeks. We are going to reintroduce it, start it all over again.
And the original TVPA, which I wrote in the year 2000, took 3
years to get enacted. And we didn't know until the very end
whether or not it would be pocket vetoed or approved by the
Clinton administration. Clinton did sign it. Thank God for
that.
But I mean it is like why isn't this a no-brainer and just
do it? But that is an area that we need to look into. I have
never heard that before, so I thank you.
So thank you so much. And we look forward to all of your
input on what the bill should further look like. And maybe you
might consider a collaborative letter from your organizations
to Trump. We could highlight it as well. I will do one from
Members of Congress. And I am sure I could get bipartisan
signatures for it because we want to make sure there is no
diminution of what we are focusing on. We don't want to see
money stop going to Alzheimer's research, or autism, or all
these other important initiatives. But I think we need to go
big. And I thank you so very, very much.
Hearing is adjourned.
[Whereupon, at 3:53 p.m, the subcommittee was adjourned.]
APPENDIX
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