[Congressional Bills 114th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1468 Introduced in House (IH)]

114th CONGRESS
  1st Session
                                H. R. 1468

  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

                             March 19, 2015

Mr. Smith of New Jersey (for himself, Mr. Fattah, and Ms. Maxine Waters 
of California) 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 2015''.

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 500 
        to an estimated one in 110, according to data released by the 
        Centers for Disease Control and Prevention (CDC) in December 
        2009. 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, health care 
        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 autism 
        twice by the age of two, 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) Three to five out of every 1,000 newborns in 
        developing countries are either born with hydrocephalus or 
        acquire it due to neonatal infections in the first few months 
        of life. It is conservatively estimated that more than 300,000 
        children are born with or acquire hydrocephalus in the 
        developing world each year.
            (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.
            (14) Many children with hydrocephalus in developing 
        countries are abandoned, ostracized, or abused due to their 
        appearance and physical and mental disabilities.
            (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. 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 44,000,000 people worldwide are suffering from Alzheimer's 
        or dementia, a figure that will expand to more than 75,000,000 
        people by 2030 and more than 115,000,000 people by 2050 if the 
        current trajectory of the disease remains unchanged. Globally, 
        a new case of dementia occurs every four seconds. More than 62 
        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 2010, the annual global societal economic cost of 
        Alzheimer's and dementia was estimated to be $604,000,000,000, 
        about 1 percent of the world's Gross Domestic Product (GDP).

                   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 two regions designated 
        pursuant to subsection (b); and
            (2) conduct training through two- or three-day biomedical 
        conferences in the two 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 biomedical interventions that can affect 
        autism, how nutrition and various metabolic issues can impact 
        behavior, the role of applied behavioral analysis, and various 
        occupational and speech therapies in fighting autism.
    (e) Funding.--To carry out this title, the Administrator shall 
allocate amounts that have been appropriated or otherwise made 
available to the United States Agency for International Development.
    (f) Autism Defined.--For purposes of this title, 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--
            (1) by redesignating the second section 135 (as added by 
        section 5(a) of the Senator Paul Simon Water for the Poor Act 
        of 2005 (Public Law 109-121; 119 Stat. 2536)) as section 136; 
        and
            (2) 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 health care 
                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 hospital 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.
            ``(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, there are authorized to be appropriated to the 
President such sums as may be necessary for each of the fiscal years 
2016 through 2020 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) Clinical care.
            (6) Supportive services for patients and caregivers, 
        including supports using innovative technologies.
            (7) Prevention and health promotion.
            (8) 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 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 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 Administrator of the United States Agency for International 
Development, in collaboration with the heads of 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.
                                 <all>