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tv   Researchers Testify on Brain Health  CSPAN  June 26, 2021 2:44am-3:06am EDT

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>> without objection the chair is authorized to declare a recess of the subcommittee at any time. all members will have five days to submit statements, extrinsic materials and questions for the record subject to the length limitation in the rules. two inches something in the record please have your staff contact the subcommittee staff.
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as a reminder to members please keep your video function on at all times even when you're not recognized by the chair. members are responsible for muting and unmuting. please remember to mute yourself after you finished speaking. consistent with house resolution eight and the accompanying regulations staff will only need members and witnesses as appropriate when they're not under recognition to eliminate background noise. i will not recognize myself for opening remarks. pursuant to notice where holding a hearing entitled "brain health: a global perspective." global health must be a priority for us all. when people are in good health the world benefits. there are lessons learned from the u.s. that can be shared globally but also there is been extensive global research from around the world that the united states can learn and benefit from. today we are turning our attention to our subject area of jurisdiction global health.
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having a healthy functioning brain affects everybody's vividly to participate in their everyday life. this includes making wise decisions, solving problems creatively, interacting successfully with others, and maintaining emotional balance. the brain changes continuously in line with how we use it to think, interact, learn, feel and imagined. our habits can contribute to or detract from the brains performance. we all know the brain needs to engage in a variety of ways to stay at its optimal peak. consistent exercise supports the break, constant stimulation, taking care of mental health and reducing stress, staying socially engaged and a healthy diet. but even if we do all of these things recommended by health practitioners would sometimes find her herself and her los impacted by brain conditions. an increasing number of children around the world of being impacted by rural development disorders such as autism spectrum disorder, which depend
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on severity concededly impair daily daily functioning social interaction and communication. the exact -- and there is no cure the early intervention can improve the quality of life. in africa where epidemiological research is nonexistent and resources are low, treatment of asd is, look it up by a lack of parental and healthcare workers knowledge and awareness, late identification in diagnosis, stigma associated with characteristics of the disorder and negative cultural beliefs and practices. this is why i'm glad to be co-leading h.r. 4160 with ranking member smith, a bipartisan bill which establishes a global autism assistance program to increase knowledge of asd in healthcare capacity and grant funded program for i hope more collects both sides of doubt can cosponsor this bill. we will be interested to learn which entities are researching asd in africa and the rest of the developing world and our
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congress can contribute to asd awareness and healthcare. another major brain condition is alzheimer's. it is destroying not only the lives of those who contract the disease but severely affects the families who many times become the primary caregivers of their loved one. one member of my staff as a father who was diagnosed with alzheimer's at the early age of 61. he went from being a happy retiree and enjoying life to having to live with his adult children. he ended up dying in adult care facility in 2017 after his condition became -- for his children to manage on a daily basis. this is -- built-ins around the world can empathize with and want to know if this penalty ideas that we are closer to your applicant was due to ensure we have one. with hydrocephalus although one can get at any age it most often occurs at birth or early childhood. i would like for the petal to talk up its global impact. i would like to know your opinion of the perspective of
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those who are treating hydrocephalus with shontz may cause lifelong problems and what are the pros and cons of cheating cases a hydrocephalus with a minimally invasive -- procedure instead. i would like to think i would disagree here today to speak to the committee by conditions treated to the brain, had a lack a sound health infrastructure can accelerate these conditions and their impacts in low resource communities and countries. the ranking member and i both have a keen interest in global health and look forward to your testimony. i now recognize the ranking member for the purpose of making his opening statement. >> thank you very much, chairwoman bass. thank you for holding this hearing and i want to also thank our very distinguished witnesses for their expertise that they will share with us this morning. at a time when his big red lines are filled with political rancor partisan bickering i can't begin to say what a pleasure it is to work with you, , karen. what really matters many needs
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of people around the world addressing food insecurity fighting traffic in pushing for peace and reconciliation human rights in sudan and ethiopia or on global autism legislation that we introduce along with my control, brian fitzpatrick. the legislation along with dave zirin on discourse our mutual commitment to brain health around the world and are very productive friendship and partnership so thank you so very much. we are living in a time when the impact of autism go alzheimer's and hydrocephalus are exploding and ordered last congress joined by chairwoman bass i introduced h.r. 2077 the global rate health act. we will update and modify it if necessary. as introduced the global brain health act would establish -- support to address autism,, hydrocephalus and osiris and of the forms of dementia. specifically must establish
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global autism assistance program which -- providers and advocacy groups focus on asd in developing countries and train parents and teachers who work with children with asd. in addition the president is authorized to provide foreign assistance to support hospitals, treating hydrocephalus in developing countries, establish a lease 20 hydrocephalus treatment centers and developed surgeon trained programs. further the department of health and human services must collaborate with the w.h.o. to establish a global alzheimer's disease and the venture action plan to conduct clinical research, raise public awareness and support prevention and treatment of alzheimer's and other forms of dementia. in testimony that is submitted for the record, madam chair, as you know doctor she says in 2014 autism speaks said they supported the first and at that point the only pan-african
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workshop dedicated to autism spectrum disorder. over 47 47 participants from4 african countries including key leaders and experts in autism spectrum disorder have identified the most pressing needs and issues facing people with autism and their communities in africa. what we found he goes on to say in doing this work is that there remains a major gap in what is known about autism disorder and africa. considerable lack of research in study that dedication and diagnosis, and on the landscape of services the needs of the local committees. children with autism special disorder in africa diagnosed relatively late, he points out,, compared to those in high income countries and those african children with autism that are undiagnosed came to visit with more severe impairment including sigar intellectual disability in the absence of expressive language. historically research activity in africa has been limited to
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infectious diseases that are associated with mortality, rather than noncommunicable conditions like autism spectrum disorder. he finally says the 2017 study found that of almost 25,000 peer-reviewed research reports on autism published up to then only 120 from sub-saharan africa, this knowledge gap is directly responsible to the gap in support and services including screenings and diagnosis, and resources needed to reliably diagnose the condition are not readily available or adapted for local needs. ideally have disciplinary teams with professional training and familiarity with the diagnosis of autism and would help children be identified and refer to services earlier. he points out that i conclude with his comments, the pervasive lack of pediatricians in sub-saharan africa is a major problem and points out that in
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malawi there was one occupational therapist and one speech therapist for over 15 million children under the age of 14 in 2012. they partner with w.h.o. have developed and delivered it a kennedy focused approach that utilizes proven methods and it also has been working very effectively or trying to in ethiopia, kenya, uganda and south africa. dr. warf has been teaching a technique that is safer and certainly highly efficacious to surgeons throughout africa, and in august 2011 he testified before our subcommittee and told us he moved his family to uganda to start a specialty hospital for pediatric neurosurgery to cure children's hospital of uganda. at that time he estimated there were 100,000-375,000 new cases of infant hydrocephalus each and every year in sub-saharan africa. the bill capacity for effective
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treatment he said about you trained ugandans to be neurosurgeons, train the local doctors and they have been very successful at that. yet resources dedicated to addrs these needs remain inadequate. they lead to premature deaths or isolation for millions of those who are affected. dr. warf, i'll be brief on this completed a relatively inexpensive technologically sophisticated surgical technique and cure at the children's hospital been using it and others called etc added to help you will explain it because it is an amazing an amazing way of people not in your opening a madam chair of that having to use shows but also the outcomes are amazing. let me just finally say that -- use shunts. the alzheimer's association estimate some 50 million people have been diagnosed with alzheimer's or related dementia. it is, and i do coach of the
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alzheimer's caucus in congress as well as autism and as well as hydrocephalus. we have seen an explosion of alzheimer's cases, like i said 50 million is a number that is estimated globally by 2050. and there's much that can be done to change that, change that trajectory. the g8 a few years ago said that by 2025 we want to have either a disease modifying therapy or cure. so the world is working across boundaries to try to come particularly in the european union, to try to finance for also restrict three great witnesses and think is a very much, madam chair. >> we appreciate all of you being here today and look for to cheer testimony. we are not going to move into the testimony from the witnesses. we want to remind you that your written statements will appear
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in the hearing record. under committee ruled six each witness should limit their oral presentation to a brief summary of the written statement and you can see the clock that is right there you make your statements and when you are finished we will open up for questions and answers. at that time you will have an ability to continue if the statement that you want to give is actually longer. our first witnesses dr. daniel geschwind who is a distinguished professor of neurology, psychiatry and human genetics at the ucla school of medicine, and a senior associate dean and associate vice chancellor of precision medicine at ucla. the overarching goal of his efforts at ucla is to develop new therapeutics for nervous system disorders for which disease altering therapies are not commonly available. including autism and neurodegenerative disorders. he serves on the editorial boards of several journals including cell, current opinion
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in genetics and ability, neuron in science and the published over 450 manuscripts. dr. gladys maestre is a neuroscientist born in venezuela and is currently a a professon the department of neuroscience and human genetics of university of texas rio grande valley school of medicine in brownsville, texas. she is also the director of the resource center for research on aging minorities in alzheimer's disease. in her doctoral research she focus on the influence of genetics of mental health and memory diseases and showed the presence of a gene is related to the risk of alzheimer's disease. dr. benjamin warf is a professor of neurosurgery at harvard medical school and host the hydrocephalus and spina bifida chair at boston children's hospital where he served as a director of neonatal and congenital anomaly neurosurgery. he is also chairman of the board
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of trustees of neural kids, a nonprofit that advocates the treatment of children with neurological disorders, underserved areas around the world, and representative smith davis a little bit more about his background in a living in uganda. with that i would like to invite dr. geschwind for his statement. >> good morning, honorable chairwoman bass and ranking member smith, and other members of this subcommittee. i want to really thank you for the opportunity to testify before you today. my remarks will be brief and will focus on introducing autism spectrum disorder, which is increasingly being recognized as a major public health challenge here i will summarize the broad effexor and africa. i also refer you to my written remarks which will contain more detail and references. autism was because he thought to be rare but it's a common brain disorder affecting one in 54
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children. four times more boys than girls. it's the leading cause of disability in children under five. it's a chronic typically lifelong condition with onset and early infancy which is what it's called a neurodevelopmental disorder. it's characterized by abnormal social development primarily as well as the presence of what are called repetitive behaviors, and some resistance to change and repetitive movements. about the third goal of intellectual disability. two-thirds vote. the wide variability and severity and symptoms -- won't -- has led to the framing of autism as a spectrum called autism spectrum disorders. there is no single test for autism, represents many different forms similars to -- most of the common disorders, diagnosis is not easy, it's performed by highly trained practitioners such as psychologists or psychologists or neurologists, and the need
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for highly trained professionals and lead to significant delays in diagnosis and treatment. just as a spectrum there is the outcomes vary widely but clear diagnosis and intervention lead to much better outcomes. therefore a major effort in the field has been to diagnose autism as early as possible and initiate behavioral treatments which have been shown to improve outcomes. with respect to early diagnosis i i bring your attention to substantial disparities in the delay of diagnosis and autism in this country at a course in africa. there's substantial problems in access to treatment and services into communities of color, namely hispanic and black children on average black children with asd have a three-year delay in diagnosis relative to white children and has a huge negative impact on outcomes. and as well as an outsized economic and social impact. autism is estimated to cost summer between 268 --
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460 million u.s. dollars annually. the disparity is magnified substantially in the developing world. in africa a population of approximately 300 million, there are only about 35 clinicians who work in autism, even in the u.s. there's one child psychiatrist for every 2000 children for adolescents needing care which is still a shortage but in west africa it's one for 3.5 million. in terms of the causes it's really as a note it's crucial to know the cause of the disease to treat it most effectively. autism has a biomedical origin just like other common brain disorders in psychiatric disorders. most risk for autism is genetic. there is room for environmental causes. we know birth complications and preterm birth can cause autism as well. but genetic studies have led to a revolution in our anderson of
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the disorder. just like for alzheimer's diseases was mentioned earlier. and more than 100 genes that identified are serving as targets for the development of new therapies in industry and academia. ancestry plays a a big role in genetic risk such that different ancestry may have different genetic contributions to disorders like autism. however, very little work is been done to elucidate genetic causes of autism in african-american or african population. studying diverse ancestries outside of a groups study has substantial advantages by enabling pin point the actual genetic causes and reducing the rate of genetic misdiagnosis in the general population. in summary, i have a few major recommendations. our understanding of autism has changed markedly in the last two decades due to growth and advances in research and medical treatment. continuing debt trajectory is essential to decreasing societal and economic burden.
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the vast majority of research that's been done in white european populations and there's need to increase inclusion of diverse population especially black americans are severely underrepresented in autism and brain disease research in general, the same holds true for hispanic americans. we must lower structural barriers that limit access to diagnostic services and treatments in underresourced communities. access to qualified providers in community of color is a major problem and this workforce needs urgent expansion. why africa the? expanding research in clinical care and africa has the advantage that advances and understand and clinical care can be accomplished at far lower costs than in the developed world but, of course, there's a humanitarian side of this as well in that the disparities that are present in this country are far greater in africa. to be effective and sustainable any effort in africa must work by supporting local clinicians and researchers, and we heard
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the example of hydrocephalus which is absolutely phenomenal. we need to do the same thing autism. we must support local clinicians and researchers who can be trained to the state of the art, the exchange programs and interactions with colleagues in the u.s. and in other countries. workforce expansion in training and africa is sorely needed and is feasible and cost-effective. this will have a direct impact on local populations, lowering the the burden of disease by intervening, by allowing earlier intervention and also a a dirt impact for us in the u.s. by economic impact, the knowledge gained which can be directly applied to our population. thanks for this opportunity. >> they just call votes, so we will take a little break but it should be very quick since fortunately it is just one vote. we


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