[Congressional Bills 116th Congress]
[From the U.S. Government Publishing Office]
[H.R. 2077 Introduced in House (IH)]
<DOC>
116th CONGRESS
1st Session
H. R. 2077
To galvanize United States Government programs in support of brain
health for global victims of autism, hydrocephalus and Alzheimer's and
other forms of dementia, and for other purposes.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
April 3, 2019
Mr. Smith of New Jersey (for himself and Ms. Bass) introduced the
following bill; which was referred to the Committee on Foreign Affairs,
and in addition to the Committee on Energy and Commerce, for a period
to be subsequently determined by the Speaker, in each case for
consideration of such provisions as fall within the jurisdiction of the
committee concerned
_______________________________________________________________________
A BILL
To galvanize United States Government programs in support of brain
health for global victims of autism, hydrocephalus and Alzheimer's and
other forms of dementia, and for other purposes.
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Global Brain Health Act of 2019''.
SEC. 2. FINDINGS.
Congress finds the following:
(1) The brain is the center of the human nervous system,
exerting centralized control over all other organs of the body.
(2) Abnormalities in sections of the brain--namely the
corpus callosum (which facilitates communication between the
two hemispheres of the brain), the amygdala (which affects
emotion and social behavior), and the cerebellum (which is
involved with motor activity, balance, and coordination)--
usually occur during prenatal development.
(3) Three main brain disorders are autism, hydrocephalus
and Alzheimer's and other forms of dementia. They impact people
in both the developed and developing world, but weigh more
heavily on sufferers in developing countries due to lack of
effective health care, lack of access to health care, or
cultural influences that inhibit treatment of sufferers of one
of these conditions.
(4) Autism is a complex neurological disorder that affects
an individual in the areas of social interaction and
communication. Because it is a spectrum disorder, it affects
each individual differently and to varying degrees of severity.
People with autism process and respond to information in unique
ways. In some cases, coexisting medical issues and aggressive
or self-injurious behavior may be present.
(5) The occurrence of autism spectrum disorders (ASD) has
increased during the past decade from an estimated one in 150
in 2000 to an estimated one in 68 in 2012, according to data
released by the Centers for Disease Control and Prevention
(CDC) in December 2016. CDC classified as suffering from ASD
children whose behaviors were consistent with the DSM-IV-TR
criteria for Autistic Disorder, Asperger Disorder, and
Pervasive Developmental Disorder--Not Otherwise Specified (PDD-
NOS).
(6) The increased number of children diagnosed with autism
is a growing and urgent concern for families, healthcare
professionals, and educators, as the health and education
systems struggle to respond to the needs of this population in
a comprehensive manner.
(7) The prevalence of autism in developing countries is
also growing rapidly, and health and education systems in these
countries are particularly ill-equipped to deal with these
issues. According to the World Health Organization, tens of
millions of individuals in Africa are affected by autism.
(8) Children with autism who receive intensive and
appropriate educational services before age 5 often make
significant functional improvements. In the United States,
significant efforts are being pursued to expand early diagnosis
and the provision of these services. In a report on the
identification, evaluation, and management of children with
autism, the American Academy of Pediatrics recommended in
November 2007 that all children should be screened for
developmental delays and disabilities, presumably including
autism, twice by the age of 2, even if they have no symptoms.
Early screening and services for autism are sorely lacking in
most of the developing world. An opportunity exists to use
United States expertise to significantly aid children and
families in developing countries, for relatively small costs.
(9) Hydrocephalus, also known as ``water on the brain'', is
a medical condition in which an abnormal accumulation of
cerebrospinal fluid in the ventricles or cavities of the brain
causes increased intracranial pressure inside the skull and
progressive enlargement of the head. If left untreated,
hydrocephalus leads to physical and mental disabilities and
eventually death.
(10) Hydrocephalus is an extremely painful condition that
most commonly occurs in infants and young children as a result
of a congenital abnormality (anatomic abnormality, aqueductal
stenosis, spina bifida or encephalocele), or post-infectious
hydrocephalus (PIH) caused by infections acquired after birth,
such as meningitis, that attack the brain.
(11) In developed countries, up to one of every 1,000
newborns develop hydrocephalus, while up to five of every 1,000
newborns in developing countries develop the condition. It is
conservatively estimated that more than 300,000 children are
born with or acquire hydrocephalus in the developing world each
year. Experts posit that hydrocephalus is more common in
developing countries because of higher birth rates, as well as
high rates of nutritional deficiencies, low infant birth
weight, and perinatal and neonatal infections.
(12) Children with hydrocephalus who are not effectively
treated or who are not treated in the early stages of the
condition suffer from cognitive deficiencies or physical
disabilities or both.
(13) Families of children who have hydrocephalus in
developing countries rarely know that it is a treatable
condition, where to go for treatment, or how to care for a
child suffering from the condition. In addition, access to care
is limited in many developing countries due to low numbers of
practicing neurosurgeons. In 2007, for example, Africa had 565
neurosurgeons, roughly 86 percent of whom were practicing in
South Africa and Northern Africa.
(14) Many children with hydrocephalus in developing
countries are abandoned, ostracized, or abused due to their
appearance, physical and mental disabilities, and inadequate
options for care.
(15) Hydrocephalus can be treated, and advances in
innovative medical procedures such as ETV/CPC have the
potential to save thousands of lives annually and prevent or
mitigate physical and mental disabilities in thousands of
children in developing countries.
(16) A number of international studies show that between
3.5 to 15 percent of all patients diagnosed with Alzheimer's or
another form of dementia actually have Normal Pressure
Hydrocephalus, a condition in which there is too much
cerebrospinal fluid, used to cushion and protect the brain and
spinal cord, in cavities in the brain called ventricles. Such
significant incidents of misdiagnosis illustrate the need for
greater awareness among members of the medical profession and
the general public of adult hydrocephalus, as well as the need
for adopting a holistic approach towards brain health instead
of a siloed one.
(17) Dementia is a degenerative condition caused by disease
of the brain--usually of a chronic or progressive nature in
which there is disturbance of multiple higher cortical
functions, including memory, thinking, orientation,
comprehension, calculation, learning capacity, language, and
judgment. Between 5 to 7 percent of the world's population age
60 and above are estimated to have dementia.
(18) Dementia can be caused by various factors, including
traumatic or localized brain injury, a temporary interruption
of the brain's supply of blood or oxygen, infection, stroke,
brain hemorrhage, prolonged seizures, or even excessive alcohol
use.
(19) According to Alzheimer's Disease International, more
than 47,000,000 people worldwide were suffering from
Alzheimer's or dementia in 2015, a figure that will expand to
more than 75,000,000 people by 2030 and more than 131,000,000
people by 2050 if the current trajectory of the disease remains
unchanged. Globally, a new person develops dementia every four
seconds. Almost 60 percent of people with dementia globally
live in low-to-middle income countries, and by 2050 this
percentage will exceed 70 percent.
(20) Alzheimer's disease and related dementias impose a
devastating, unsustainable, and rapidly growing toll on the
health and fiscal well-being of the United States and all
countries. In 2015, dementia care cost an estimated
$818,000,000,000, worldwide, more than 1 percent of the world's
Gross Domestic Product (GDP). The cost of dementia care is
projected to reach $2,000,000,000,000 by 2030.
TITLE I--GLOBAL AUTISM ASSISTANCE
SEC. 101. GLOBAL AUTISM ASSISTANCE PROGRAM.
(a) Establishment and Purpose.--The Administrator for the United
States Agency for International Development shall establish and
administer a health and education grant program, to be known as the
Global Autism Assistance Program, to--
(1) support activities under subsection (c)(2) by
nongovernmental organizations and other service providers,
including advocacy groups, focused on autism in developing
countries; and
(2) establish a ``teach the teachers'' program under
subsection (d) to train health and education professionals
working with children with autism in developing countries.
(b) Designation of Eligible Regions.--Not later than 120 days after
the date of the enactment of this Act, the Administrator, in
consultation with knowledgeable autism organizations such as the World
Autism Organization, the Autism Society of America, and Autism Speaks,
shall designate not fewer than two regions in developing countries that
are determined to--
(1) require assistance in dealing with autism; and
(2) have sufficient familiarity with issues related to
autism to make effective use of the Global Autism Assistance
Program.
(c) Selection of Implementing NGO.--
(1) In general.--Not later than 180 days after the
designation of eligible regions pursuant to subsection (b), the
Administrator shall select and award a grant under this section
to a nongovernmental organization with experience in autism-
related issues to implement the Global Autism Assistance
Program through selection and awarding of grants to local
service providers and advocacy groups focused on autism.
(2) Activities.--A local service provider or advocacy group
that receives a grant under paragraph (1) may use such grant to
carry out any of the following activities (including, as
appropriate, the translation into local languages of relevant
English-language publications):
(A) Education and outreach to the public.--Use
public service announcements and other public media to
help the public become more aware of the signs of
autism so that children with autism can be diagnosed
and treated earlier.
(B) Support to families.--Development of resources
for families, such as online web resource centers in
local languages, dissemination of materials to parents
of newly diagnosed children, such as information
contained in the Centers for Disease Control and
Prevention's publication entitled ``Learn the Signs,
Act Early'', or other suitable alternatives, and
dissemination of educational aids and guides to help
parents with their children's development.
(C) Support to educational institutions.--Funding
for schools or other educational institutions, focusing
on teachers of the youngest students, and including the
distribution of equipment or of the materials referred
to in subparagraph (B).
(D) Support to clinics and medical centers.--
Provision of funding to clinics and medical centers
with proven records in addressing autism to assist with
operating expenses, including personnel, equipment
supplies, and facilities, development of assessment
testing for autism, and acquisition of specialized
equipment, such as augmentative communication devices.
(3) Applications for grants.--
(A) Submission of applications.--To be eligible to
receive a grant from the implementing nongovernmental
organization, a local service provider or advocacy
group shall submit to such implementing nongovernmental
organization an application at such time, in such
manner, and containing such information as such
implementing nongovernmental organization may require.
(B) Establishment of screening board.--
(i) In general.--The implementing
nongovernmental organization responsible for
implementing the Global Autism Assistance
Program shall establish a screening board to be
known as the Project Advisory Board to review
for content and appropriateness applications
from local service providers or advocacy groups
submitted in accordance with subparagraph (A).
(ii) Membership.--The members of the
Project Advisory Board shall be appointed by
the implementing nongovernmental organization,
in consultation with the Administrator, and in
accordance with the following provisions:
(I) Each member shall serve for a
term of one year and each member may
serve as many as three consecutive
terms.
(II) A member of the Project
Advisory Board may continue to serve
after the expiration of the term of
such member until such time as a
successor is appointed.
(III) Membership of the Project
Advisory Board shall include at least
seven voting members who are members of
autism advocacy groups, professionals
working with autism, or otherwise
associated with the autism community.
Among the voting members of the Board
shall be at least two parents from
different families of individuals with
autism, one medical professional
working with autism, one teacher of
individuals with autism, and one
individual who has autism. Efforts
shall be made to include on the Project
Advisory Board individuals with
experience working in the developing
world.
(IV) Membership of the Project
Advisory Board shall include non-voting
members as determined appropriate by
the Administrator.
(V) Membership of the Project
Advisory Board shall be chosen so as to
ensure objectivity and balance and to
reduce the potential for conflicts of
interest.
(4) Support and assistance.--The implementing
nongovernmental organization shall provide, contract for, and
coordinate technical assistance in support of its mission in
meeting the goals and purposes of this Act.
(d) Teach the Teachers.--The implementing nongovernmental
organization, acting on behalf of the Administrator, in consultation
with the Project Advisory Board, shall establish a program, to be known
as the Teach the Teachers Program, to--
(1) identify health and education professionals to receive
specialized training for teaching and working with youth with
autism, including training conducted in two- or three-day
workshops at locations within one of the regions designated
pursuant to subsection (b); and
(2) conduct training through two- or three-day biomedical
conferences in at least two of the regions designated pursuant
to subsection (b), including bringing medical and psychological
specialists from the United States to train and educate parents
and health professionals who deal with autism, including
training related to--
(A) biomedical interventions that can affect
autism;
(B) how nutrition and various metabolic issues can
impact behavior;
(C) the role of applied behavioral analysis; and
(D) various occupational and speech therapies in
fighting autism.
(e) Funding.--To carry out this section, the Administrator shall
allocate amounts that have been appropriated or otherwise made
available to the United States Agency for International Development.
(f) Annual Report.--The Administrator shall submit to the Committee
on Foreign Affairs of the House of Representatives and the Committee on
Foreign Relations of the Senate on an annual basis a report on
activities carried out under this section during the prior calendar
year.
(g) Autism Defined.--In this section, the term ``autism'' means all
conditions consistent with autism spectrum disorders described in
section 2(5).
TITLE II--INTERNATIONAL HYDROCEPHALUS TREATMENT AND TRAINING
SEC. 201. ASSISTANCE TO TREAT HYDROCEPHALUS AND TRAIN SURGEONS.
Chapter 1 of part I of the Foreign Assistance Act of 1961 (22
U.S.C. 2151 et seq.) is amended by adding at the end the following:
``SEC. 137. ASSISTANCE TO TREAT HYDROCEPHALUS AND TRAIN SURGEONS.
``(a) Purposes.--The purposes of assistance authorized by this
section are--
``(1) to ensure that life-saving treatment of hydrocephalus
is an important priority of United States bilateral foreign
assistance, including through promotion of innovative
treatments and training of medical practitioners from the
developing world in the latest treatment protocols and best
practices for the treatment of hydrocephalus, including--
``(A) surgery and post-surgery care in developing
countries;
``(B) the creation of a comprehensive hydrocephalus
training program based in the developing world for
surgeons and key members of their medical team; and
``(C) the training of medical practitioners based
in the developing world in ETV/CPC and other
appropriate treatment protocols; and
``(2) to promote research to reduce the incidence of PIH
epidemiology, pathophysiology, and disease burden, and to
improve treatment of hydrocephalus.
``(b) Authorization.--To carry out the purposes of subsection (a),
the President is authorized to provide assistance to support a network
of trained medical practitioners to treat hydrocephalus in children at
pediatric hospitals and hydrocephalus treatment centers in developing
countries with a high incidence of hydrocephalus.
``(c) Activities Supported.--
``(1) Comprehensive program.--
``(A) In general.--Assistance provided under
subsection (b) shall, to the maximum extent
practicable, be used to establish a comprehensive
program to administer global hydrocephalus treatment
and training activities utilizing a network of
pediatric hospitals capable of performing endoscopic
surgery in developing countries.
``(B) Administration.--The program described in
subparagraph (A) shall be administered by healthcare
executives and neurosurgeons with expertise in the
treatment of hydrocephalus.
``(C) Responsibilities.--The responsibilities of
the administrators described in subparagraph (B) shall
include--
``(i) developing an appropriate education
and training curriculum;
``(ii) establishing quality control
standards;
``(iii) instituting safety guidelines and
standards; and
``(iv) developing monitoring and evaluation
protocols.
``(2) Training hospital.--
``(A) In general.--Assistance provided under
subsection (b) shall, to the maximum extent
practicable, be used to establish a surgeon training
program within a pediatric hospital based in a
developing country with a high incidence of
hydrocephalus with the goal of training four surgeons
annually and a total of 20 surgeons over a 5-year
period to treat hydrocephalus utilizing the ETV/CPC
technique.
``(B) Timeline.--To the maximum extent practicable,
the surgeon training program described in subparagraph
(A) should be operational no later than 1 year after
the date of enactment of this section.
``(C) Training admissions criteria.--Candidates for
the surgeon training program established under
subparagraph (A) shall--
``(i) have a demonstrated commitment to
providing medical assistance in the developing
world; and
``(ii) certify that the candidate intends
to remain and practice medicine in the
developing world following completion of the
program.
``(D) Training program methodology.--The surgeon
training program established under subparagraph (A)
shall--
``(i) be conducted by a neurosurgeon with a
minimum of 3 years of full-time operating
experience in the developing world;
``(ii) be a hands-on operating room
experience in the developing world;
``(iii) utilize a hydrocephalus treatment
protocol with an emphasis on ETV/CPC as the
preferred treatment when medically appropriate;
and
``(iv) require that each trainee complete a
minimum of 50 ETV/CPC or ETV procedures and at
least 25 VP shunt procedures.
``(3) Treatment centers.--
``(A) In general.--Assistance provided under
subsection (b) shall, to the maximum extent
practicable, be used to establish at least 20
hydrocephalus treatment centers located at public and
private hospitals in developing countries with a high
incidence of hydrocephalus, which shall include
treatment costs, endoscopy equipment and medical
supplies necessary to provide ETV/CPC procedures to
treat hydrocephalus.
``(B) Staffing.--The treatment centers described in
subparagraph (A) shall be staffed by--
``(i) one or more surgeons who have
successfully completed the surgeon training
program provided pursuant to paragraph (2); and
``(ii) a patient care administrator.
``(C) Treatment.--The treatment centers described
in subparagraph (A) shall--
``(i) provide surgery to treat
hydrocephalus in children;
``(ii) perform at least 50 hydrocephalus
surgeries annually including a minimum of 25
ETV or ETV/CPC surgeries; and
``(iii) provide post-surgery care and
support for the children treated in accordance
with clause (i).
``(4) Medical records and data.--Assistance provided under
subsection (b) shall, to the maximum extent practicable,
include the maintenance of medical records which track patient
care activities and information about the causes and incidence
rates of PIH.
``(d) Definitions.--In this section:
``(1) CPC.--The term `CPC' means choroid plexus
cauterization, a surgical procedure to reduce the production of
cerebrospinal fluid in the brain.
``(2) ETV.--The term `ETV' means endoscopic third
ventriculostomy, a shunt-less surgical procedure in which an
opening is created in the floor of the third ventricle of the
brain allowing cerebrospinal fluid to bypass any obstruction
and flow directly to the basal cisterns.
``(3) ETV/CPC.--The term `ETV/CPC' means the shunt-less
surgical method for treating hydrocephalus through the
combination of ETV and CPC surgical procedures.
``(4) Hydrocephalus.--The term `hydrocephalus' means a
medical condition in which an abnormal accumulation of
cerebrospinal fluid in the ventricles or cavities of the brain
causes increased intracranial pressure inside the skull and
progressive enlargement of the head.
``(5) Medical practitioners.--The term `medical
practitioners' means physicians, nurses, and other clinicians,
such as physical therapists.
``(6) PIH.--The term `PIH' means post-infectious or
acquired hydrocephalus which is the onset of hydrocephalus
after birth due to the affects of an infection, such as
meningitis, that has attacked the brain.
``(7) VP shunt.--The term `VP shunt' means a
ventriculoperitonea shunt which is a plastic tube that is
regulated by a valve and surgically placed in a brain ventricle
that allows the cerebrospinal fluid to flow out of the brain
through the tube and into the patient's abdomen.
``(e) Authorization of Appropriations.--Of the amounts made
available to carry out this chapter for child survival and maternal
health programs through the Bureau of Global Health of the United
States Agency for International Development, there are authorized to be
appropriated to the President $375,000,000 for each of the fiscal years
2021 through 2025 to carry out this section.''.
TITLE III--INTERNATIONAL ALZHEIMER'S DISEASE AND DEMENTIA PROGRAMS
SEC. 301. GLOBAL ALZHEIMER'S DISEASE AND DEMENTIA ACTION PLAN.
(a) In General.--The Secretary of Health and Human Services shall
enter into negotiations with the World Health Organization to develop a
plan for addressing Alzheimer's disease and other forms of dementia
globally, to be known as the Global Alzheimer's Disease and Dementia
Action Plan, focused on the following areas:
(1) Research, including--
(A) clinical research; and
(B) development of a stable and sustained
international commitment to research.
(2) Regulatory issues.
(3) Clinical care.
(4) Supportive services for patients and caregivers,
including supports using innovative technologies.
(5) Prevention and health promotion.
(6) Public awareness and education, particularly efforts
aimed at reducing stigmas and increasing the inclusion of
persons with Alzheimer's disease and dementia within civil
society.
(b) International Partnerships.--
(1) In general.--In developing the plan under subsection
(a), the Secretary of Health and Human Services--
(A) shall seek--
(i) to enter into partnerships with other
nations that have in place national plans for
addressing Alzheimer's disease and other forms
of dementia; and
(ii) to the greatest extent possible,
ensure that the plan under subsection (a) is
compatible with the plans of such other
nations; and
(B) in the case of other nations that do not have
such plans in place, shall encourage such nations to
develop and implement such plans.
(2) Sense of congress.--It is the sense of the Congress
that the Group of Eight (G8) nations, working with the Group of
Twenty (G20) nations, the Group of Seventy-Seven (G77) nations,
and other organizations including the Organization for Economic
Cooperation and Development (OECD), should investigate systems
to monitor and provide care to individuals with Alzheimer's
disease and other forms of dementia in developing countries to
help build care delivery capacity.
SEC. 302. GLOBAL ALZHEIMER'S DISEASE AND DEMENTIA FUND.
(a) In General.--The Secretary of Health and Human Services,
working with the Secretary of the Treasury, other nations,
nongovernmental organizations, and private entities, shall seek to
establish a fund, to be known as the Global Alzheimer's Disease and
Dementia Fund, to provide resources to support implementation of the
Global Alzheimer's Disease and Dementia Action Plan.
(b) Early-Stage Efforts.--In the early stages of carrying out
subsection (a), the Secretary of Health and Human Services shall
establish priority areas of focus and a governance structure for the
Global Alzheimer's Disease and Dementia Fund.
SEC. 303. ALZHEIMER'S DISEASE AND DEMENTIA COORDINATOR.
The President shall appoint a high-level official from the
Department of Health and Human Services to lead and coordinate all
efforts of the Federal Government with respect to developing the Global
Alzheimer's Disease and Dementia Action Plan and the Global Alzheimer's
Disease and Dementia Fund.
SEC. 304. FOREIGN AID IMPLICATIONS.
The Secretary of Health and Human Services, in collaboration with
the heads of the United States Agency for International Development and
other relevant Federal departments and agencies, shall--
(1) investigate the foreign aid implications of Alzheimer's
disease and other forms of dementia; and
(2) inform Congress as to the need for possible changes to
health care-related foreign assistance.
SEC. 305. PUBLIC-PRIVATE PARTNERSHIPS.
The President shall encourage and facilitate partnerships between
the Federal Government and the private sector, such as the partnerships
in effect between the National Institutes of Health and pharmaceutical
companies, to identify new approaches to treat Alzheimer's disease and
other forms of dementia.
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