Global Brain Health Act of 2019

I 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 ad- dition 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 con- cerned A BILL To galvanize United States Government programs in support of brain health for global victims of autism, hydro- cephalus and Alzheimer’s and other forms of dementia, and for other purposes. Be it enacted by the Senate and House of Representa- 1 tives of the United States of America in Congress assembled, 2 SECTION 1. SHORT TITLE. 3 This Act may be cited as the ‘‘Global Brain Health 4 Act of 2019’’. 5 VerDate Sep 11 2014 01:21 Apr 17, 2019 Jkt 089200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\H2077.IH H2077 pbinns on DSK79D2C42PROD with BILLS 2 •HR 2077 IH SEC. 2. FINDINGS. 1 Congress finds the following: 2 (1) The brain is the center of the human nerv- 3 ous system, exerting centralized control over all 4 other organs of the body. 5 (2) Abnormalities in sections of the brain— 6 namely the corpus callosum (which facilitates com- 7 munication between the two hemispheres of the 8 brain), the amygdala (which affects emotion and so- 9 cial behavior), and the cerebellum (which is involved 10 with motor activity, balance, and coordination)— 11 usually occur during prenatal development. 12 (3) Three main brain disorders are autism, hy- 13 drocephalus and Alzheimer’s and other forms of de- 14 mentia. They impact people in both the developed 15 and developing world, but weigh more heavily on 16 sufferers in developing countries due to lack of effec- 17 tive health care, lack of access to health care, or cul- 18 tural influences that inhibit treatment of sufferers of 19 one of these conditions. 20 (4) Autism is a complex neurological disorder 21 that affects an individual in the areas of social inter- 22 action and communication. Because it is a spectrum 23 disorder, it affects each individual differently and to 24 varying degrees of severity. People with autism proc- 25 ess and respond to information in unique ways. In 26 VerDate Sep 11 2014 01:21 Apr 17, 2019 Jkt 089200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H2077.IH H2077 pbinns on DSK79D2C42PROD with BILLS 3 •HR 2077 IH some cases, coexisting medical issues and aggressive 1 or self-injurious behavior may be present. 2 (5) The occurrence of autism spectrum dis- 3 orders (ASD) has increased during the past decade 4 from an estimated one in 150 in 2000 to an esti- 5 mated one in 68 in 2012, according to data released 6 by the Centers for Disease Control and Prevention 7 (CDC) in December 2016. CDC classified as suf- 8 fering from ASD children whose behaviors were con- 9 sistent with the DSM–IV–TR criteria for Autistic 10 Disorder, Asperger Disorder, and Pervasive Develop- 11 mental Disorder—Not Otherwise Specified (PDD– 12 NOS). 13 (6) The increased number of children diagnosed 14 with autism is a growing and urgent concern for 15 families, healthcare professionals, and educators, as 16 the health and education systems struggle to re- 17 spond to the needs of this population in a com- 18 prehensive manner. 19 (7) The prevalence of autism in developing 20 countries is also growing rapidly, and health and 21 education systems in these countries are particularly 22 ill-equipped to deal with these issues. According to 23 the World Health Organization, tens of millions of 24 individuals in Africa are affected by autism. 25 VerDate Sep 11 2014 01:21 Apr 17, 2019 Jkt 089200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H2077.IH H2077 pbinns on DSK79D2C42PROD with BILLS 4 •HR 2077 IH (8) Children with autism who receive intensive 1 and appropriate educational services before age 5 2 often make significant functional improvements. In 3 the United States, significant efforts are being pur- 4 sued to expand early diagnosis and the provision of 5 these services. In a report on the identification, eval- 6 uation, and management of children with autism, 7 the American Academy of Pediatrics recommended 8 in November 2007 that all children should be 9 screened for developmental delays and disabilities, 10 presumably including autism, twice by the age of 2, 11 even if they have no symptoms. Early screening and 12 services for autism are sorely lacking in most of the 13 developing world. An opportunity exists to use 14 United States expertise to significantly aid children 15 and families in developing countries, for relatively 16 small costs. 17 (9) Hydrocephalus, also known as ‘‘water on 18 the brain’’, is a medical condition in which an abnor- 19 mal accumulation of cerebrospinal fluid in the ven- 20 tricles or cavities of the brain causes increased 21 intracranial pressure inside the skull and progressive 22 enlargement of the head. If left untreated, hydro- 23 cephalus leads to physical and mental disabilities 24 and eventually death. 25 VerDate Sep 11 2014 01:21 Apr 17, 2019 Jkt 089200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H2077.IH H2077 pbinns on DSK79D2C42PROD with BILLS 5 •HR 2077 IH (10) Hydrocephalus is an extremely painful 1 condition that most commonly occurs in infants and 2 young children as a result of a congenital abnor- 3 mality (anatomic abnormality, aqueductal stenosis, 4 spina bifida or encephalocele), or post-infectious hy- 5 drocephalus (PIH) caused by infections acquired 6 after birth, such as meningitis, that attack the 7 brain. 8 (11) In developed countries, up to one of every 9 1,000 newborns develop hydrocephalus, while up to 10 five of every 1,000 newborns in developing countries 11 develop the condition. It is conservatively estimated 12 that more than 300,000 children are born with or 13 acquire hydrocephalus in the developing world each 14 year. Experts posit that hydrocephalus is more com- 15 mon in developing countries because of higher birth 16 rates, as well as high rates of nutritional defi- 17 ciencies, low infant birth weight, and perinatal and 18 neonatal infections. 19 (12) Children with hydrocephalus who are not 20 effectively treated or who are not treated in the early 21 stages of the condition suffer from cognitive defi- 22 ciencies or physical disabilities or both. 23 (13) Families of children who have hydro- 24 cephalus in developing countries rarely know that it 25 VerDate Sep 11 2014 01:21 Apr 17, 2019 Jkt 089200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H2077.IH H2077 pbinns on DSK79D2C42PROD with BILLS 6 •HR 2077 IH is a treatable condition, where to go for treatment, 1 or how to care for a child suffering from the condi- 2 tion. In addition, access to care is limited in many 3 developing countries due to low numbers of prac- 4 ticing neurosurgeons. In 2007, for example, Africa 5 had 565 neurosurgeons, roughly 86 percent of whom 6 were practicing in South Africa and Northern Afri- 7 ca. 8 (14) Many children with hydrocephalus in de- 9 veloping countries are abandoned, ostracized, or 10 abused due to their appearance, physical and mental 11 disabilities, and inadequate options for care. 12 (15) Hydrocephalus can be treated, and ad- 13 vances in innovative medical procedures such as 14 ETV/CPC have the potential to save thousands of 15 lives annually and prevent or mitigate physical and 16 mental disabilities in thousands of children in devel- 17 oping countries. 18 (16) A number of international studies show 19 that between 3.5 to 15 percent of all patients diag- 20 nosed with Alzheimer’s or another form of dementia 21 actually have Normal Pressure Hydrocephalus, a 22 condition in which there is too much cerebrospinal 23 fluid, used to cushion and protect the brain and spi- 24 nal cord, in cavities in the brain called ventricles. 25 VerDate Sep 11 2014 01:21 Apr 17, 2019 Jkt 089200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H2077.IH H2077 pbinns on DSK79D2C42PROD with BILLS 7 •HR 2077 IH Such significant incidents of misdiagnosis illustrate 1 the need for greater awareness among members of 2 the medical profession and the general public of 3 adult hydrocephalus, as well as the need for adopt- 4 ing a holistic approach towards brain health instead 5 of a siloed one. 6 (17) Dementia is a degenerative condition 7 caused by disease of the brain—usually of a chronic 8 or progressive nature in which there is disturbance 9 of multiple higher cortical functions, including mem- 10 ory, thinking, orientation, comprehension, calcula- 11 tion, learning capacity, language, and judgment. Be- 12 tween 5 to 7 percent of the world’s population age 13 60 and above are estimated to have dementia. 14 (18) Dementia can be caused by various fac- 15 tors, including traumatic or localized brain injury, a 16 temporary interruption of the brain’s supply of blood 17 or oxygen, infection, stroke, brain hemorrhage, pro- 18 longed seizures, or even excessive alcohol use. 19 (19) According to Alzheimer’s Disease Inter- 20 national, more than 47,000,000 people worldwide 21 were suffering from Alzheimer’s or dementia in 22 2015, a figure that will expand to more than 23 75,000,000 people by 2030 and more than 24 131,000,000 people by 2050 if the current trajectory 25 VerDate Sep 11 2014 01:21 Apr 17, 2019 Jkt 089200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\H2077.IH H2077 pbinns on DSK79D2C42PROD with BILLS 8 •HR 2077 IH of the disease remains unchanged. Globally, a new 1 person develops dementia every four seconds. Almost 2 60 percent of people with dementia globally live in 3 low-to-middle income countries, and by 2050 this 4 percentage will exceed 70 percent. 5 (20) Alzheimer’s disease and related dementias 6 impose a devastating, unsustainable, and rapidly 7 growing toll on the health and fiscal well-being of 8 the United States and all countries. In 2015, demen- 9 tia care cost an estimated $818,000,000,000, world- 10 wide, more than 1 percent of the world’s Gross Do- 11 mestic Product (GDP). The cost of dementia care is 12 projected to reach $2,000,000,000,000 by 2030. 13 TITLE I—GLOBAL AUTISM 14 ASSISTANCE 15 SEC. 101. GLOBAL AUTISM ASSISTANCE PROGRAM. 16 (a) ESTABLISHMENT AND PURPOSE.—The Adminis- 17 trator for the United States Agency for International De- 18 velopment shall establish and administer a health and edu- 19 cation grant program, to be known as the Global Autism 20 Assistance Program, to— 21 (1) support activities under subsection (c)(2) by 22 nongovernmental organizations and other service 23 providers, including advocacy groups, focused on au- 24 tism in developing countries; and 25 VerDate Sep 11 2014 01:21 Apr 17, 2019 Jkt 089200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\H2077.IH H2077 pbinns on DSK79D2C42PROD with BILLS 9 •HR 2077 IH (2) establish a ‘‘teach the teachers’’ program 1 under subsection (d) to train health and education 2 professionals working with children with autism in 3 developing countries. 4 (b) DESIGNATION OF ELIGIBLE REGIONS.—Not later 5 than 120 days after the date of the enactment of this Act, 6 the Administrator, in consultation with knowledgeable au- 7 tism organizations such as the World Autism Organiza- 8 tion, the Autism Society of America, and Autism Speaks, 9 shall designate not fewer than two regions in developing 10 countries that are determined to— 11 (1) require assistance in dealing with autism; 12 and 13 (2) have sufficient familiarity with issues re- 14 lated to autism to make effective use of the Global 15 Autism Assistance Program. 16 (c) SELECTION OF IMPLEMENTING NGO.— 17 (1) IN GENERAL.—Not later than 180 days 18 after the designation of eligible regions pursuant to 19 subsection (b), the Administrator shall select and 20 award a grant under this section to a nongovern- 21 mental organization with experience in autism-re- 22 lated issues to implement the Global Autism Assist- 23 ance Program through selection and awarding of 24 VerDate Sep 11 2014 01:21 Apr 17, 2019 Jkt 089200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\H2077.IH H2077 pbinns on DSK79D2C42PROD with BILLS 10 •HR 2077 IH grants to local service providers and advocacy groups 1 focused on autism. 2 (2) ACTIVITIES.—A local service provider or ad- 3 vocacy group that receives a grant under paragraph 4 (1) may use such grant to carry out any of the fol- 5 lowing activities (including, as appropriate, the 6 translation into local languages of relevant English- 7 language publications): 8 (A) EDUCATION AND OUTREACH TO THE 9 PUBLIC.—Use public service announcements 10 and other public media to help the public be- 11 come more aware of the signs of autism so that 12 children with autism can be diagnosed and 13 treated earlier. 14 (B) SUPPORT TO FAMILIES.—Development 15 of resources for families, such as online web re- 16 source centers in local languages, dissemination 17 of materials to parents of newly diagnosed chil- 18 dren, such as information contained in the Cen- 19 ters for Disease Control and Prevention’s publi- 20 cation entitled ‘‘Learn the Signs, Act Early’’, or 21 other suitable alternatives, and dissemination of 22 educational aids and guides to help parents 23 with their children’s development. 24 VerDate Sep 11 2014 01:21 Apr 17, 2019 Jkt 089200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\H2077.IH H2077 pbinns on DSK79D2C42PROD with BILLS 11 •HR 2077 IH (C) SUPPORT TO EDUCATIONAL INSTITU- 1 TIONS.—Funding for schools or other edu- 2 cational institutions, focusing on teachers of the 3 youngest students, and including the distribu- 4 tion of equipment or of the materials referred 5 to in subparagraph (B). 6 (D) SUPPORT TO CLINICS AND MEDICAL 7 CENTERS.—Provision of funding to clinics and 8 medical centers with proven records in address- 9 ing autism to assist with operating expenses, in- 10 cluding personnel, equipment supplies, and fa- 11 cilities, development of assessment testing for 12 autism, and acquisition of specialized equip- 13 ment, such as augmentative communication de- 14 vices. 15 (3) APPLICATIONS FOR GRANTS.— 16 (A) SUBMISSION OF APPLICATIONS.—To 17 be eligible to receive a grant from the imple- 18 menting nongovernmental organization, a local 19 service provider or advocacy group shall submit 20 to such implementing nongovernmental organi- 21 zation an application at such time, in such 22 manner, and containing such information as 23 such implementing nongovernmental organiza- 24 tion may require. 25 VerDate Sep 11 2014 01:21 Apr [Text truncated for display. 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