,i #aaeth ,,congress #ast ,session ,h4 ,r4 #dfba ,,in ,,the ,,house ,,of ,,representatives ,december #ab1 #bjag,mr4 ,smith of ,new ,jersey 7for himself1 ,mr4 ,cohen1 and ,mr4 ,mc,govern7 introduced the following bill2 which was referred to the ,committee on ,foreign ,affairs1 and in addition to the ,committee on ,energy and ,commerce1 for a period to be subsequently determined by the ,speaker1 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 autism1 hydrocephalus and ,alzheimer's and other forms of dementia1 and for other purposes4 #a4 ,short title ,this ,act may be cited as the ,global ,brain ,health ,act of #bjag4 #b4 ,findings ,congress finds the following3 7#a7 ,the brain is the center of the human nervous system1 exerting centralized control over all other organs of the body4 7#b7 ,abnormalities in sections of the brain--namely the corpus callosum 7which facilitates communication between the two hemispheres of the brain71 the amygdala 7which affects emotion and social behavior7 and the cerebellum 7which is involved with motor activity1 balance1 and coordination7--usually occur during prenatal development4 7#c7 ,three main brain disorders are autism1 hydrocephalus and ,alzheimer's and other forms of dementia4 ,they impact people in both the developed and developing world1 but weigh more heavily on sufferers in developing countries due to lack of effective health care1 lack of access to health care or cultural influences that inhibit treatment of sufferers of one of these conditions4 7#d7 ,autism is a complex neurological disorder that affects an individual in the areas of social interaction and communication4 ,because it is a spectrum disorder1 it affects each individual differently and to varying degrees of severity4 ,people with autism process and respond to information in unique ways4 ,in some cases1 coexisting medical issues and aggressive or self-injurious behavior may be present4 7#e7 ,the occurrence of autism spectrum disorders 7,,asd7 has increased during the past decade from an estimated one in #aej in #bjjj to an estimated one in #fh in #bjab1 according to data released by the ,centers for ,disease ,control and ,prevention 7,,cdc7 in ,december #bjaf4 ,,cdc classified as suffering from ,,asd children whose behaviors were consistent with the ,,dsm-,,iv-,,tr criteria for ,autistic ,disorder1 ,asperger ,disorder1 and ,pervasive ,developmental ,disorder--,not ,otherwise ,specified 7,,pdd-,,nos74 7#f7 ,the increased number of children diagnosed with autism is a growing and urgent concern for families1 healthcare professionals1 and educators1 as the health and education systems struggle to respond to the needs of this population in a comprehensive manner4 7#g7 ,the prevalence of autism in developing countries is also growing rapidly1 and health and education systems in these countries are particularly ill-equipped to deal with these issues4 ,according to the ,world ,health ,organization1 tens of millions of individuals in ,africa are affected by autism4 7#h7 ,children with autism who receive intensive and appropriate educational services before age #e often make significant functional improvements4 ,in the ,united ,states1 significant efforts are being pursued to expand early diagnosis and the provision of these services4 ,in a report on the identification1 evaluation1 and management of children with autism1 the ,american ,academy of ,pediatrics recommended in ,november #bjjg that all children should be screened for developmental delays and disabilities1 presumably including autism1 twice by the age of #b1 even if they have no symptoms4 ,early screening and services for autism are sorely lacking in most of the developing world4 ,an opportunity exists to use ,united ,states expertise to significantly aid children and families in developing countries1 for relatively small costs4 7#i7 ,hydrocephalus1 also known as water on the brain1 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 head4 ,if left untreated1 hydrocephalus leads to physical and mental disabilities and eventually death4 7#aj7 ,hydrocephalus is an extremely painful condition that most commonly occurs in infants and young children as a result of a congenital abnormality 7anatomic abnormality1 aqueductal stenosis1 spina bifida or encephalocele71 or post-infectious hydrocephalus 7,,pih7 caused by infections acquired after birth1 such as meningitis1 that attack the brain4 7#aa7 ,in developed countries1 up to one of every #a1jjj newborns develop hydrocephalus1 while up to five of every #a1jjj newborns in developing countries develop the condition4 ,it is conservatively estimated that more than #cjj1jjj children are born with or acquire hydrocephalus in the developing world each year4 ,experts posit that hydrocephalus is more common in developing countries because of higher birth rates1 as well as high rates of nutritional deficiencies1 low infant birth weight1 and perinatal and neonatal infections4 7#ab7 ,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 both4 7#ac7 ,families of children who have hydrocephalus in developing countries rarely know that it is a treatable condition1 where to go for treatment1 or how to care for a child suffering from the condition4 ,in addition1 access to care is limited in many developing countries due to low numbers of practicing neurosurgeons4 ,in #bjjg1 for example1 ,africa had #efe neurosurgeons1 roughly #hf percent of whom were practicing in ,south ,africa and ,northern ,africa4 7#ad7 ,many children with hydrocephalus in developing countries are abandoned1 ostracized1 or abused due to their appearance1 physical and mental disabilities1 and inadequate options for care4 7#ae7 ,hydrocephalus can be treated1 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 countries4 7#af7 ,a number of international studies show that between #c4e to #ae percent of all patients diagnosed with ,alzheimer's or another form of dementia actually have ,normal ,pressure ,hydrocephalus1 a condition in which there is too much cerebrospinal fluid1 used to cushion and protect the brain and spinal cord1 in cavities in the brain called ventricles4 ,such significant incidents of misdiagnosis illustrate the need for greater awareness among members of the medical profession and the general public of adult hydrocephalus1 as well as the need for adopting a holistic approach towards brain health instead of a siloed one4 7#ag7 ,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 functions1 including memory1 thinking1 orientation1 comprehension1 calculation1 learning capacity1 language1 and judgment4 ,between #e to #g percent of the world's population age #fj and above are estimated to have dementia4 7#ah7 ,dementia can be caused by various factors1 including traumatic or localized brain injury1 a temporary interruption of the brain's supply of blood or oxygen1 infection1 stroke1 brain hemorrhage1 prolonged seizures1 or even excessive alcohol use4 7#ai7 ,according to ,alzheimer's ,disease ,international1 more than #dg1jjj1jjj people worldwide were suffering from ,alzheimer's or dementia in #bjae1 a figure that will expand to more than #ge1jjj1jjj people by #bjcj and more than #aca1jjj1jjj people by #bjej if the current trajectory of the disease remains unchanged4 ,globally1 a new person develops dementia every four seconds4 ,almost #fj percent of people with dementia globally live in low-to-middle income countries1 and by #bjej this percentage will exceed #gj percent4 7#bj7 ,alzheimer's disease and related dementias impose a devastating1 unsustainable1 and rapidly growing toll on the health and fiscal well-being of the ,united ,states and all countries4 ,in #bjae1 dementia care cost an estimated #hah1jjj1jjj1jjj1 worldwide1 more than #a percent of the world's ,gross ,domestic ,product 7,,gdp74 ,the cost of dementia care is projected to reach #b1jjj1jjj1jjj1jjj by #bjcj4 ,i ,global ,autism ,assistance #aja4 ,global ,autism ,assistance ,program 7a7 ,establishment and purpose ,the ,administrator for the ,united ,states ,agency for ,international ,development shall establish and administer a health and education grant program1 to be known as the ,global ,autism ,assistance ,program1 to-- 7#a7 support activities under subsection 7c77#b7 by nongovernmental organizations and other service providers1 including advocacy groups1 focused on autism in developing countries2 and 7#b7 establish a teach the teachers program under subsection 7d7 to train health and education professionals working with children with autism in developing countries4 7b7 ,designation of eligible regions ,not later than #abj days after the date of the enactment of this ,act1 the ,administrator1 in consultation with knowledgeable autism organizations such as the ,world ,autism ,organization1 the ,autism ,society of ,america1 and ,autism ,speaks1 shall designate not fewer than two regions in developing countries that are determined to-- 7#a7 require assistance in dealing with autism2 and 7#b7 have sufficient familiarity with issues related to autism to make effective use of the ,global ,autism ,assistance ,program4 7c7 ,selection of implementing ,,ngo 7#a7 ,in general ,not later than #ahj days after the designation of eligible regions pursuant to subsection 7b71 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 autism4 7#b7 ,activities ,a local service provider or advocacy group that receives a grant under paragraph 7#a7 may use such grant to carry out any of the following activities 7including1 as appropriate1 the translation into local languages of relevant ,english-language publications73 7,a7 ,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 earlier4 7,b7 ,support to families ,development of resources for families1 such as online web resource centers in local languages1 dissemination of materials to parents of newly diagnosed children1 such as information contained in the ,centers for ,disease ,control and ,prevention's publication entitled ,learn the ,signs1 ,act ,early1 or other suitable alternatives1 and dissemination of educational aids and guides to help parents with their children's development4 7,c7 ,support to educational institutions ,funding for schools or other educational institutions1 focusing on teachers of the youngest students1 and including the distribution of equipment or of the materials referred to in subparagraph 7,b74 7,d7 ,support to clinics and medical centers ,provision of funding to clinics and medical centers with proven records in addressing autism to assist with operating expenses1 including personnel1 equipment supplies1 and facilities1 development of assessment testing for autism1 and acquisition of specialized equipment1 such as augmentative communication devices4 7#c7 ,applications for grants 7,a7 ,submission of applications ,to be eligible to receive a grant from the implementing nongovernmental organization1 a local service provider or advocacy group shall submit to such implementing nongovernmental organization an application at such time1 in such manner1 and containing such information as such implementing nongovernmental organization may require4 7,b7 ,establishment of screening board 7i7 ,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 7,a74 7ii7 ,membership ,the members of the ,project ,advisory ,board shall be appointed by the implementing nongovernmental organization1 in consultation with the ,administrator1 and in accordance with the following provisions3 7,i7 ,each member shall serve for a term of one year and each member may serve as many as three consecutive terms4 7,,ii7 ,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 appointed4 7,,iii7 ,membership of the ,project ,advisory ,board shall include at least seven voting members who are members of autism advocacy groups1 professionals working with autism1 or otherwise associated with the autism community4 ,among the voting members of the ,board shall be at least two parents from different families of individuals with autism1 one medical professional working with autism1 one teacher of individuals with autism1 and one individual who has autism4 ,efforts shall be made to include on the ,project ,advisory ,board individuals with experience working in the developing world4 7,,iv7 ,membership of the ,project ,advisory ,board shall include non-voting members as determined appropriate by the ,administrator4 7,v7 ,membership of the ,project ,advisory ,board shall be chosen so as to ensure objectivity and balance and to reduce the potential for conflicts of interest4 7#d7 ,support and assistance ,the implementing nongovernmental organization shall provide1 contract for1 and coordinate technical assistance in support of its mission in meeting the goals and purposes of this ,act4 7d7 ,teach the teachers ,the implementing nongovernmental organization1 acting on behalf of the ,administrator1 in consultation with the ,project ,advisory ,board1 shall establish a program1 to be known as the ,teach the ,teachers ,program1 to-- 7#a7 identify health and education professionals to receive specialized training for teaching and working with youth with autism1 including training conducted in two- or three-day workshops at locations within one of the regions designated pursuant to subsection 7b72 and 7#b7 conduct training through two- or three-day biomedical conferences in at least two of the regions designated pursuant to subsection 7b71 including bringing medical and psychological specialists from the ,united ,states to train and educate parents and health professionals who deal with autism1 including training related to-- 7,a7 biomedical interventions that can affect autism2 7,b7 how nutrition and various metabolic issues can impact behavior2 7,c7 the role of applied behavioral analysis2 and 7,d7 various occupational and speech therapies in fighting autism4 7e7 ,funding ,to carry out this section1 the ,administrator shall allocate amounts that have been appropriated or otherwise made available to the ,united ,states ,agency for ,international ,development4 7f7 ,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 year4 7g7 ,autism defined ,in this section1 the term autism means all conditions consistent with autism spectrum disorders described in section #b7e74 ,,ii ,international hydrocephalus treatment and training #bja4 ,assistance to treat hydrocephalus and train surgeons ,chapter #a of part ,i of the ,foreign ,assistance ,act of #aifa 7#bb ,u4,s4,c4 #baea et4 seq47 is amended by adding at the end the following3 #acg4 ,assistance to treat hydrocephalus and train surgeons 7a7 ,purposes ,the purposes of assistance authorized by this section are-- 7#a7 to ensure that life-saving treatment of hydrocephalus is an important priority of ,united ,states bilateral foreign assistance1 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 hydrocephalus1 including-- 7,a7 surgery and post-surgery care in developing countries2 7,b7 the creation of a comprehensive hydrocephalus training program based in the developing world for surgeons and key members of their medical team2 and 7,c7 the training of medical practitioners based in the developing world in ,,etv_/,,cpc and other appropriate treatment protocols2 and 7#b7 to promote research to reduce the incidence of ,,pih epidemiology1 pathophysiology1 and disease burden1 and to improve treatment of hydrocephalus4 7b7 ,authorization ,to carry out the purposes of subsection 7a71 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 hydrocephalus4 7c7 ,activities supported 7#a7 ,comprehensive program 7,a7 ,in general ,assistance provided under subsection 7b7 shall1 to the maximum extent practicable1 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 countries4 7,b7 ,administration ,the program described in subparagraph 7,a7 shall be administered by healthcare executives and neurosurgeons with expertise in the treatment of hydrocephalus4 7,c7 ,responsibilities ,the responsibilities of the administrators described in subparagraph 7,b7 shall include-- 7i7 developing an appropriate education and training curriculum2 7ii7 establishing quality control standards2 7iii7 instituting safety guidelines and standards2 and 7iv7 developing monitoring and evaluation protocols4 7#b7 ,training hospital 7,a7 ,in general ,assistance provided under subsection 7b7 shall1 to the maximum extent practicable1 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 #bj surgeons over a #e-year period to treat hydrocephalus utilizing the ,,etv_/,,cpc technique4 7,b7 ,timeline ,to the maximum extent practicable1 the surgeon training program described in subparagraph 7,a7 should be operational no later than #a year after the date of enactment of this section4 7,c7 ,training admissions criteria ,candidates for the surgeon training program established under subparagraph 7,a7 shall-- 7i7 have a demonstrated commitment to providing medical assistance in the developing world2 and 7ii7 certify that the candidate intends to remain and practice medicine in the developing world following completion of the program4 7,d7 ,training program methodology ,the surgeon training program established under subparagraph 7,a7 shall-- 7i7 be conducted by a neurosurgeon with a minimum of #c years of full-time operating experience in the developing world2 7ii7 be a hands-on operating room experience in the developing world2 7iii7 utilize a hydrocephalus treatment protocol with an emphasis on ,,etv_/,,cpc as the preferred treatment when medically appropriate2 and 7iv7 require that each trainee complete a minimum of #ej ,,etv_/,,cpc or ,,etv procedures and at least #be ,,vp shunt procedures4 7#c7 ,treatment centers 7,a7 ,in general ,assistance provided under subsection 7b7 shall1 to the maximum extent practicable1 be used to establish at least #bj hydrocephalus treatment centers located at public and private hospitals in developing countries with a high incidence of hydrocephalus1 which shall include treatment costs1 endoscopy equipment and medical supplies necessary to provide ,,etv_/,,cpc procedures to treat hydrocephalus4 7,b7 ,staffing ,the treatment centers described in subparagraph 7,a7 shall be staffed by-- 7i7 one or more surgeons who have successfully completed the surgeon training program provided pursuant to paragraph 7#b72 and 7ii7 a patient care administrator4 7,c7 ,treatment ,the treatment centers described in subparagraph 7,a7 shall-- 7i7 provide surgery to treat hydrocephalus in children2 7ii7 perform at least #ej hydrocephalus surgeries annually including a minimum of #be ,,etv or ,,etv_/,,cpc surgeries2 and 7iii7 provide post-surgery care and support for the children treated in accordance with clause 7i74 7#d7 ,medical records and data ,assistance provided under subsection 7b7 shall1 to the maximum extent practicable1 include the maintenance of medical records which track patient care activities and information about the causes and incidence rates of ,,pih4 7d7 ,definitions ,in this section3 7#a7 ,,cpc ,the term ,,cpc means choroid plexus cauterization1 a surgical procedure to reduce the production of cerebrospinal fluid in the brain4 7#b7 ,,etv ,the term ,,etv means endoscopic third ventriculostomy1 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 cisterns4 7#c7 ,,etv_/,,cpc ,the term ,,etv_/,,cpc means the shunt-less surgical method for treating hydrocephalus through the combination of ,,etv and ,,cpc surgical procedures4 7#d7 ,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 head4 7#e7 ,medical practitioners ,the term medical practitioners means physicians1 nurses1 and other clinicians1 such as physical therapists4 7#f7 ,,pih ,the term ,,pih means post-infectious or acquired hydrocephalus which is the onset of hydrocephalus after birth due to the affects of an infection1 such as meningitis1 that has attacked the brain4 7#g7 ,,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 abdomen4 7e7 ,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 ,development1 there are authorized to be appropriated to the ,president #cge1jjj1jjj for each of the fiscal years #bjai through #bjbc to carry out this section4 4 ,,iii ,international ,alzheimer's ,disease and ,dementia ,programs #cja4 ,global ,alzheimer's ,disease and ,dementia ,action ,plan 7a7 ,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 globally1 to be known as the ,global ,alzheimer's ,disease and ,dementia ,action ,plan1 focused on the following areas3 7#a7 ,research1 including-- 7,a7 clinical research2 and 7,b7 development of a stable and sustained international commitment to research4 7#b7 ,regulatory issues4 7#c7 ,clinical care4 7#d7 ,supportive services for patients and caregivers1 including supports using innovative technologies4 7#e7 ,prevention and health promotion4 7#f7 ,public awareness and education1 particularly efforts aimed at reducing stigmas and increasing the inclusion of persons with ,alzheimer's disease and dementia within civil society4 7b7 ,international partnerships 7#a7 ,in general ,in developing the plan under subsection 7a71 the ,secretary of ,health and ,human ,services-- 7,a7 shall seek-- 7i7 to enter into partnerships with other nations that have in place national plans for addressing ,alzheimer's disease and other forms of dementia2 and 7ii7 to the greatest extent possible1 ensure that the plan under subsection 7a7 is compatible with the plans of such other nations2 and 7,b7 in the case of other nations that do not have such plans in place1 shall encourage such nations to develop and implement such plans4 7#b7 ,sense of ,congress ,it is the sense of the ,congress that the ,group of ,eight 7,g#h7 nations1 working with the ,group of ,twenty 7,g#bj7 nations1 the ,group of ,seventy-,seven 7,g#gg7 nations1 and other organizations including the ,organization for ,economic ,cooperation and ,development 7,,oecd7 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 capacity4 #cjb4 ,global ,alzheimer's ,disease and ,dementia ,fund 7a7 ,in general ,the ,secretary of ,health and ,human ,services1 working with the ,secretary of the ,treasury1 other nations1 nongovernmental organizations1 and private entities1 shall seek to establish a fund1 to be known as the ,global ,alzheimer's ,disease and ,dementia ,fund1 to provide resources to support implementation of the ,global ,alzheimer's ,disease and ,dementia ,action ,plan4 7b7 ,early-,stage efforts ,in the early stages of carrying out subsection 7a71 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 ,fund4 #cjc4 ,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 ,fund4 #cjd4 ,foreign aid implications ,the ,secretary of ,health and ,human ,services1 in collaboration with the heads of the ,united ,states ,agency for ,international ,development and other relevant ,federal departments and agencies1 shall-- 7#a7 investigate the foreign aid implications of ,alzheimer's disease and other forms of dementia2 and 7#b7 inform ,congress as to the need for possible changes to health care-related foreign assistance4 #cje4 ,public-private partnerships ,the ,president shall encourage and facilitate partnerships between the ,federal ,government and the private sector1 such as the partnerships in effect between the ,national ,institutes of ,health and pharmaceutical companies1 to identify new approaches to treat ,alzheimer's disease and other forms of dementia4