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tv   Researchers Testify on Brain Health  CSPAN  July 14, 2021 10:18pm-10:40pm 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. 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.
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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 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. having a healthy functioning brain affects everybody's vividly to participate in their everyday life. this includes making wise
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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 on severity concededly impair daily daily functioning social interaction and communication. the exact -- and there is no cure the early intervention can
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improve the quality of life. in africa where epidemiological research is nonexistent and resources are low, tre at>> sources are, low treatment of asd it's complicated when it comes to awareness, later than a positional diagnosis. stigma social characteristics of the disorder and major cultural beliefs, and practices. this is why i'm glad, we're coating this with ranking member smith. a global autism assistance program to increase knowledge of asd in health care capacity through a grant funding program. i hope that more of my colleagues from both sides of the aisle can cosponsor this bill. will be interested to learn which entities are researching asd in africa than the rest of the developing world, and how congress can contribute to asd awareness and health care. and other major brain condition
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is alzheimer's it is destroying not only the lives of those who contract the disease but it severely affects the families who many times become the primary caregivers of their loved ones. one member of my staff as a father who is diagnosed with alzheimer's at the early age of 61. he went from being a happy, retiree, and joining life, to having to live with his adult children. he ended up dying in an adult care facility in 2017 after his condition became too much for his children to manage on a daily basis. this is occurring with millions around the world. and i want to know if this panel is any ideas of were closer to a cure, and what congress can do to ensure that we have one. with hydrocephalus, although anyone can get it at any age, in most often occurs at birth, or early childhood. i would like for the panel to talk about its global impact. i'd also like to cedar -- treating hydrocephalus with shunts may cause lifelong
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problems. and what the pros and cons of dealing with hydrocephalus with a minimally investigative procedure instead. i'd like to thank all our witnesses for being here today, to speak to the committee about conditions attributed to the brain, how the lack of a sound health structure can accelerate these conditions and their impacts in low resource communities and countries. the ranking member and i both have a key interest in global health, and look forward to your testimony. i now recognize the ranking number for the purpose of making his opening statements. >> thank you very much, chairwoman karen -- thank you for holding this hearing. i also want to thank a very distinguished witnesses for their expertise, that they've shared with us this morning. at a time when newspaper headlines are filled with political anger and partisan bickering, i can't begin to say what a pleasure it is to work with you, karen. what's really matters, meeting the needs of people around the world. addressing food insecurity, fighting human trafficking,
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pushing for peace. reconciliation, human rights, and ethiopia, nigeria. war on global autism legislation that you and i introduced with the help of mike doyle, fitzpatrick, and then miser. the legislation along with today's hearing a discourse and visual committed it -- to bring health around the world. and a very productive friendship and partnership, so thank you so very much. we are living in a time when the impact of autism, alzheimer's, and hydrocephalus are exploding everywhere. joined by chairwoman bass, i'd like to -- health act. after this hearing we will update and modify if necessary, and reintroduced that legislation, let's introduce the global aid health act to establish programs providing international support for -- and other forms of dementia. the un agency for international development most established a global authors zoom assistance
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program as part of a local service provider and advocacy groups focused on a sec in developing countries. and train parents and teachers who work with children with a sc. in addition, the president has provided pharmaceutical assistance for hospitals who are treating hydrocephalus in developing countries. and establish it leads hydrocephalus treatment centers, and trained programs. for the department of health and services, to establish a global alzheimer's disease and dementia action plan to conduct clinical research, raise public awareness, and support prevention and treatment of alzheimer's in other forms of dementia. in testimony that has been submitted for the record, madam chair, as you know, doctor anthony -- on autism, says, that in 2014 autism -- there's reported the first, and at that point the only pan-african workshop dedicated to autism spectrum disorder. over 47 participants of 14
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african countries, including key leaders and experts in the autism spectrum disorder, helped identify the most pressing means and issues facing people with autism and their communities in africa. what we found, he goes on to say, and doing this work was that there remains a beige or gap in what is known about autism disorder in africa. there's considerable lack of research and study and identification of dialysis, and on the landscape of services that needs of the local communities. children with autism spectrum disorder and africa are diagnosed relatively late, he points out. compared to those of high income countries, then those african children with autism that are diagnosed ten -- prevent with more severe impairment, including severe influential stability in the absence of impressive -- expressing language. historically, the community in africa has been limited infectious diseases associated with mortality rather than non
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communicable conditions like autism, and spectrum disorder. finally says that into seven seven -- almost out of 25,000 pure reviewed support documents on research published them, only 120 were from sub-saharan africa. this knowledge gap is directly responsible for the gap of -- including screening diagnosis. [inaudible] reliably diagnose the condition aren't readily available or adapted for local needs. [inaudible] disciplinary teams with professional training and familiarity -- who would help children identify -- he points, out i conclude on this point and comment, the pervasive lack of pediatricians -- and sub-saharan africa is a major problem. in malawi, there is one occupational therapist and one
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speech therapist for over 15 million children in 2012. they partnered with the w.h.o., and created a community focused approach that utilizes proven methods. and ethiopia, kenya, south africa. now doctor ward has been teaching a technique that is safe or and a highly efficacious to surgeons throughout africa. and in august 2011, he testified before rcep committee to tell those that he actually moved his family to uganda to start a special hospital for pediatric neurosurgery. insurance on spittle view canada. at that time, he estimated that there were 100,000 375,000 new cases of and -- hydrocephalus in sub-saharan africa. now to build capacity for treatment, he told about treating you condoms, to be the
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neurosurgeons. not just people come in, but train local doctors, and they've been very successful at that. yet, resources dedicated to address these needs remain adequate. we need to -- they lead to premature deaths or isolations, for millions of those who are affected. doctor wharf, i'll be brief on this, created a relatively inexpensive technologically significant -- surgical technique, and a cure -- that has been using it and others it is called a tv, will hopefully you'll explain it because it is an amazing, amazing way, as he pointed out your opening message chair, of not having just shunts, but also the outcomes are amazing. let me finally say that the all-time are so station estimates 50 million people have been diagnosed with alzheimer's or related dementia. i do co-chair the halls timers caucus in congress as well as
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autism and hydrocephalus. we've seen an explosion walsh hammers cases, 50 million is the number estimated globally by 2050. there is much that can be done to change that trajectory. by 2025, we want to have either a disease modifying therapy or a cure. so the world is working across boundaries to try to find answers to alzheimer's. thank you so much. >> we appreciate all of you being here and look forward to your testimony. we will move into the testimony from the witnesses, and we want to remind you that your written statements will appear in a
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hearing record. you make your statements, and when you are finished, we will open up for questions and answers. at that time, we will have an ability to continue with the statement you wanted to give. our first witness is doctor daniel geschwind from the ucla school of medicine, and the associate vice chancellor of precision medicine at ucla. the overarching goal of these efforts at ucla is to develop new therapeutics for nervous system disorders for which disease altering therapies are not available, including autism and narrow degenerative disorders. he serves on the board of several journals and.
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doctor gladys, is a neural scientist born in venezuela. two she is also the director at the resource center for research on aging minorities and alzheimer's. in her doctoral research, we took showed that the presence of a jean is related to the risk of alzheimer's disease. dr. benjamin ward is from parker medical school and holds the hydrocephalus and spine a befuddle chair at boston hospital. he is part of a nonprofit that
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advocates for treating children with neurological disorders in underserved areas around the world, and representative smith gave us a bit more about his background living in uganda. with that, i'd like to invite dr. gauche win. >> good morning, honorable chairwoman and ranking members to. i want to thank you for the opportunity to speak 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. i will summarize the causes, a broad impact, and i will refer you to my written remarks, which contained more detail and references. autism was previously thought to be rare, but it's a common disorder infecting one in 54 children, four times more boys than girls.
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it's the leading cause of disability and children under five. it's a chronic, typically lifelong condition, with onset and early infancy, why it's called a developmental disorder. it's characterized by abnormal social development primarily, as well as the presence of what are called repetitive behaviors. there is resistance to change and repetitive movement. a third will have intellectual disability. two thirds won't. the wide variability in outcomes has led to the framing of autism as a spectrum called autism spectrum disorder. there is no single test for autism. it represents many different forms similar to pneumonia, cancer and other common disorders. diagnosis has performed by a trained practitioners, and the need for highly trained professionals can lead to
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significant delays in diagnosis and treatment. just as the spectrum varies, the outcome varies wildly. therefore, a major effort in the field has been to diagnose autism as early as possible and initiate behavioural treatments which have been shown to improve outcomes. with respect to early diagnosis, i bring your attention to disparities in the delay of diagnosis of autism in this country and in africa. there's problems and access to treatment and service and communities of color, mainly hispanic and black children. children have a three year delay compared -- a negative impact on outcomes. as well as an outsized economic and social impact. autism cost between 268 and 461 billion u.s. dollars annually. the disparity is magnified
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substantially in the developing world. in west africa, with a population of 300 million, they are only about 35 conditions who work in autism. even in the u.s., there is one child psychiatrist for every 2000 adolescents needing care, which is still a shortage. it's crucial to know the cause of the disease to treat at most effectively. autism has a biomedical origin, just like other common brain disorders and psychiatric disorders. the most risk for autism is genetic. there is room for environmental causes. pre-term birth can cause autism as well, but genetic studies have led to our revolution and our understanding of the disorder, just like for alzheimer's disease. more than 100 jeans now
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identified are serving as more than targets for the development of new therapies and industry. ancestry plays a big role in genetic risk the. however, very little work has been done to elucidate the causes of autism an african american or african populations. studying diverse ancestry's has substantial advantages, by enabling genetic causes and reducing the rate of genetic misdiagnosis in the general population. in summary, i have a few major recommendations. our recommendation of autism has changed remarkably in the last decades due to growth and advances in research and clinical treatment. continuing the trajectory is essential to decreasing societal and economic burden.
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there is a need to increase the diverge -- severely underrepresented, and brain disease research in general. the same holds true for hispanic americans. we must lower structural barriers and bring treatment to under-resourced communities. expanding research and clinical care and africa has the advantage of advancing understanding care to be established at far lower cost than in the developed world. then there is the humanitarian side as well and the disparities that are present in this country are far greater in africa. any efforts in africa must work by supporting local clinicians and researchers, and we heard the example of hydrocephalus,
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which is absolutely phenomenal. we need to do the same thing for autism. we must support local researchers who can be trained through state-of-the-art exchange programs and interactions with colleagues. workforce expansion is sorely needed. it will also have a direct impact in the u.s. via the economic impact, the knowledge gained, which can be directly applied to our population. thank you for this opportunity. >> they just called votes, so we will take a little break. but it should be quick. fortunately, it's just one vote. we will recess for the next few minutes. >> good morning, chairwoman
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bass, ranking member smith, distinguished members of the committee. about 10% of older adults suffer from


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