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Understanding 9/11tv Down Syndrome Hearing CSPAN October 25, 2017 9:54pm-12:15am EDT
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>> there's in the house members will debate the 2018 federal budget which contains provisions for the senate to contain tax reforms. the budget is used by the appropriations committee. the measure starts the budget reconciliation process telling the house to start work on tax reform. the begins at 9:00 a.m. eastern on c-span. >> c-span, or history unfolds daily. in 1979 c-span was created as a public service and was brought you today by your cable or satellite provider. >> next, hearing for funding on down syndrome research.
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they talk about the personal experience raising children with down syndrome. the cochairs also testified along with medical experts, advocates and individuals with the syndrome of how research can lead to breakthroughs. his hearing is two hours and 20 minutes. [inaudible] >> will convene a meeting chairman will join us for a few minutes. the delicate members waiting period before we start i want to recognize my friend from arkansas. thank you and i would like to disclose that sometime around 11:00 o'clock i have to depart early for previously scheduled meeting. want to take a moment to recognize a lady in the audience
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today and each one of my colleagues have been provided a glossy bio. but for the benefit of the audience for hearing purposes to recognize mary lorraine foreman and she's in the back. mary is a freshman at the university of arkansas. [applause] we don't have to call box today but given our record we probably shouldn't be calling the hawks right now. that said, as information provided my colleagues this is a special young lady doing very well in her college studies at the university of arkansas. she's not one of the people
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testified she is a traffic story. so i commend her like graphical information to tomorrow colleagues and i want her to know how honored and privileged we are to have her in our audience. mary, thank you for how you represent our great state in this class. and welcome. [applause] >> il back. >> a morning. it's my pleasure to write welcome you to discuss the state of science for down syndrome research. the hearing is timely as october's down syndrome awareness month which is time to expand awareness of the accomplishments and abilities of those with down syndrome.
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the first panel includes tireless advocates for those improving the lives with those with down syndrome. improving the quality of life for americans with down syndrome. research is important because as the number of births with babies increases on the lifespan expanse were likely to see large increase of americans living with down syndrome. research targeted to contribute to improving the lives of individuals with down syndrome. additionally discovery suggest that down syndrome research has the potential to contribute to our knowledge of other diseases and disorders that affect all americans. please introduce the witnesses
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about to say i'm -- is the proud father of young man named alex is down syndrome. he has been a passionate advocate as the lead sponsor he worked tirelessly to the family opportunity act in 2006 which gives states the option to create the buy-in. he's a cochair of the congressional down syndrome caucus serves as advisor to the president for special olympics in texas and serves as a board member for the best buddies international. sherry represents the 17th congressional district and is cochair of the democratic policy and communications committee. the distinguished member within
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the next writer reputation. i'll introduce kathy, she was the chief african congress, chair of the house republican congress she's the fourth highest-ranking congressman in house in 2007 she gave birth to cole rogers, cole was born with trisomy 21 and inspired her to become a leader in the disabilities community. she's a cochair of the congressional down syndrome caucus and played a role in securing passage of the able act in 2014 which created tax-free savings accounts for them to be able save for their future. now michelle is the cofounder, president and ceo of the global down syndrome foundation as well
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as the director of the anna jc foundation which is the largest must for grants for down syndrome related programs. the executive director is also professor in the department of pharmacology that shoots -- doctor william is a distinguished professor and chair at the university of california san diego and serves as the executive director of ucsd's for research and treatment that is the chair of alzheimer's disease research. i'm frank stevens who is the word of the quincy jones advocacy award in 2016.
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as an advocate he speaks spoken all over including individuals with disabilities. when the expert went as panel gets here will be operated by the five-minute clock. her colleagues have busy schedules so allow them to give testimony and will open up for comment or question. with that, it's a delight to have a here's my good friend and a recognized leader in this area a strong voice for disabilities in your recognized for whatever remarks you like to make. >> i forgot, i wasn't paying
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attention to my good friend the ranking member has an opening statement. i apologize to my friend for that. >> thank you very much mr. sharon. apologies as well. it's a delight to have you here today. we really do welcome you to the subcommittee. look forward to your's testimony. just a heartfelt thanks for your dedicated work in collaboration with this wonderful community and the support of research and efforts to look into down syndrome. also pleased to welcome our second panel. i want to recognize michelle, president and ceo of the global down syndrome foundation. what an enormous impact on the lies and the impact with people with down syndrome through
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research, medical care and advocacy. michelle's family is with her today, mom and dad, and i have to say, her mom is from naples. so i have to recognize my own roots in this effort, it's wonderful to see you again last but not leak lisa's frank stevens and thank you for your advocacy and sharing experiences today. i also want to recognize a constituent, i.e. just in from allah, they're here today advocating so it's wonderful and enlightening for american people to see the ways in which we do debate issues. we hear from experts in an act
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legislation were grateful they're here today. i'm looking forward to the hearing. the potential for scientific breakthroughs relate to down syndrome has never been greater than it is today. those breakthroughs are so important as individuals face higher health risk the rest of the population including risk for heart problems, in addition as they age those affected have an elevated risk of developing dimension related to alzheimer's disease. all of the pathological manifestations are present in the brains of those with down syndrome page 40. he has a page 6090% of individuals will suffer the effects of dementia. those are heartbreaking
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statistics. and as frank stephen said, let's make our goal to be alzheimer's free. at the same time, individuals with down syndrome are likely to have heart less likely to have heart attack and cancer. as panels can attest were discovering individuals with down syndrome it helped identify cures for treatments for diseases that continue to kill millions of americans is why i the honors advocate and include report language in the bill that would encourage the nih to explore an initiative to better understand the physiological mechanism that predestined
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individuals one with that their copy of trisomy 21 to be vulnerable to a range of diseases that cause 60% of deaths in the u.s. it's important work that should not be silent. as we have learned from witness testimony this morning will further explore this in the hearing. promising resource should be pursued by experts in each of those research disciplines. presents an opportunity to make scientific advances and possibly discover the keys to presenting diseases that affect millions of american families every year. our panelist calls this therapeutic leverage.
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that's a great term and i hope we can use that to improve the lives of individuals with down syndrome and millions of others who suffer from debilitating disease. in the interest of time i will only make reference which is that even while we have $34 billion thanks to a 2 billion-dollar increase or increases have not kept pace with biomedical research. our budget has declined by about six have billion dollars flowing adjust for inflation. our work is cut out to increase that funding. individuals with down syndrome we need to take a look at the investments we make.
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welcome to my colleagues in the panel that follows. >> i think that generally refer testimony and i apologize. >> helena start once again with the chairman rules committee and a very good personal friend, you are recognized for whatever remarks you recant drink care to make. >> thank you very much into the committee members for taking their time to attend this hearing i thank you. i come to the table as the father is a member of congress, as a member of congress interested in policy that would be good for a lot of people and good for america. i come to give you insights as a result of what they're doing today it will open eyes and ears
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of people across this country who have recognize people in their community, maybe next her neighbor, but it opens up the ice about how important each where people are with down syndrome. there persons with down syndrome people born just like you and i. they were selected in a different way by god to be special. some people refer to them as angels. they are in our midst very much want and need not only to be respected but included in the general asked tributes of society to make their lives better too. think what you'll hear over and over is a recognition of how important it is for congress to turn not only their resolve into making life better for them but by helping all people.
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so my son is 23 years old here he is as a eagle scout with me and alex then a year or so ago we would ballgame you had a chance to be there. alex works for home depot. so the business community has caught on that there's attributes that might include them in a work relationship. say were talking about factors including how the nih might be more involved in the research and advancing the things that we know exist within our down syndrome community but what i would like to say is fairfax factors about our advancements that made life better. you will hear doctor mildly has
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been my advisor, my guy that i play for because he makes advances in what he would tell you is that the average person would live to nine years old in the 80s 25, this now almost 60. that's because the attitudes of the american people including the medical community who would look at a person and think perhaps they didn't have the tools to adequately take care of them for some bias on some intellectual ability model or from their own bias of not really understanding the importance of that person. by you taking the opportunity to hear our story, you'll see people behind me that are all
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over our great land. their families who work in their down syndrome societies back to their homes. the people who make calls to family and as i have done many times that this is a gift, this is an opportunity as a parent to accept a relationship is a special person trying growth to not only a lifetime of activity but one that we would better their lives and so many others. my son is an eagle scout i think he taught each of those boys as much about life and the opportunities is any scouting experience they have. but i also tell you that alex, now age 23 does not remember a
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day in scouting. some of the greatest parts of my life in his life he can even remember. so tells me and us that we need to turn to research. not just the medical community, but the researchers at nih than others who can look at the general population and begin working on those intellectual areas, areas not only of the brain but of the root receptor that snaps in the dendrites that allow the brain to function talk back and forth. that is a specialty type of work that you has members of this appropriations committee get into. encourage you to please understand that what is here behind us today is invited by the cochair of our down syndrome
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caucus, we are asking you to please know how important today's hearing this and to thank each and everyone of you. as i look at this committee i see not only collects, i see people who recognize that research and development of the r&d models that is pushing the nih and directors we believe is important. lastly, doctor collins and i are very good friends and i have asked six different times to come to the rules committee. as we talk about issues that the nih handles they need $300 million more a year to give them a better opportunity to
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grow the scientific community of young people to give them the first taste of an opportunity to be a leader for us to grow our young people. not only are we here with the opportunity to discuss down syndrome, but overall as you look at a pot of money that might give the director the chance to offer seedlings and evidence to grow the number of researchers and investigators of be helpful. give my thanks not only for your kindness and thoughtfulness as you make tough decisions about the direction of this country. i trust you'll do that well. i ask unanimous consent that anything i have in writing is available today. >> thank you.
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good to have you here. some point out for the record of my colleagues know this for quite often accused of being very partisan and polarized in to some degree that's a polarizing remark, this causes one of and i'm delighted to see a bipartisan group. my colleague is recognized for whatever opening statement she cares. >> thank you. want to thank you for having us here in houston us. i think the beautiful people here behind us, medical professionals and the people who are here with down syndrome. thank you for taking the time today. pat, my state of illinois mostly
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rural district, we teach our sons and our daughters to make sure lifting each other up to build strong communities and make sure everyone has a chance to succeed the matter where they come from. it's important that we treat everyone with value. it's in that capacity but i'm proud to be a cochair because it is the right thing to do. it's a pleasure to be here today. i've met wonderful families and wonderful children and adults with down syndrome. i'm gonna share one of my favorite stories that was in 2014 when i see just about everybody sitting up there and the day that we voted for the able act and a colleague of mine have brought a young lady named breanna on the house floor.
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i instantly had this bond with breanna and later found out she had some roots in illinois. we were together and that some of us do and there's children with us will put our card into our voting booth and say to want to press the yes button. breanna was there i said what you press the yes button. it was that vote that took us over the number. as she press that button the gallery if you remember it went nuts. it was with that vote that the able act fast. to this day i keep in touch with her family and her mom and dad. i know most people here know this already but for the record on a talk about things that i
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hope we all understand. we know that when someone with down syndrome oxen to the room they lighted up. we now they often live long, happy successful lives as congressmen session talked about one week into his new job. but there's also other facts that are leading to this debate today so i'll the national institutes of health assessing growth over the last 20 years the funding for down syndrome research has remained somewhat flat. just yesterday i spoke with breanna's dad, brad. he shared with me that his family got lyme disease about six months ago.
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while breanna's mom and dad have recovered, breanna is still having a rough go of it. this is six months after diagnosis. she still struggling to walk. her dad has to carry her to the kitchen table in the restaurant to go to bed at night. because people down syndrome had of a weaker immune system. there's little research into that part of the condition. today's testimony social why it's so important to fix that. people down syndrome have remarkable differences in their health but there me into some of the most common health threats that we deal with. the naturally resistant to most all forms of cancer, rarely have heart attacks and high blood pressure is almost unheard of.
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so it could help scientists fight cancer and address heart attacks which affect so many of our loved ones. we need to do more to help those with down syndrome to delete longer and healthier lives. i didn't know back in the 50s the average age was only nine. were making tremendous progress but we need more. we want people in down syndrome to live well past their 60s. my talk about dimension alzheimer's neuroscience memory already and only being in his 20s. right now almost 100% of people down syndrome will display some types of sign by the time in the 40s. we have to make them all a challenge to address in a top priority. i think with a stronger
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commitment to issues we can tackle together. to your point to michael, something certainly does not have to have a democratic or republican label. i want to be a partner in addressing this and pleased to be appear with my colleagues and with that i yield back. >> thank you for your testimony. that i'm chair, want to quickly note for the record what a delight it is to have you here, highest-ranking women in congress. clearly the most capable person on the republican leadership team. the summit i once described as someone who knows how to throw a punch with a smile. she's extremely expect effective but she also brings us together.
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she has brought us together and played a significant role in the passage of the able legislation. it's a delight to have you here. your recognize for whatever remarks he cared mac. >> thank you so much. and thank you for holding this hearing on this tremendous potential for those related to down syndrome. it's not just for those with down syndrome, is for millions of others not thrilled to be here as part of this community today and to be joined with a packed room that represent part of the down syndrome community. ten years ago our oldest uncle and tested positive for that extra 21st chromosome. then today : is a happy healthy fifth-grader. his master multiplication of his
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classmates want him to be on their team because he does so well. he's in cub scouts on his way to be in an eagle scout. he loves playing basketball. without medical research children like : have the opportunities they do today. the discovery began with doctor down. in 1866 this brilliant english dr. laid out the groundwork for will become a rich history of dramatic medical breakthroughs. the 50s that led to the discovery that humans have 46 chromosomes in each cell but an individual account down syndrome has 47. an international team catalogued each of the approximately 329 genes on chromosome 21. the today the alzheimer's disease gene has also been connected to the 21st
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chromosome. as a mama member of congress i dedicate my time tab key for more research and increase opportunities for those born with down syndrome. today there is more to discover. 50% of babies born with down syndrome are born with a congenital heart defect. although no case of someone with down syndrome having a heart attack. have a higher likelihood of developing juvenile leukemia although those with leukemia do not have solid tumor cancers. an 82% beyond 60 years. this was a dramatic increase in life expectancy. however, most every individual develops alzheimer's or dementia. even though congress has increased the nih budget in
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large part to the work of this committee, funding makes up less than 100 of a percent of the total budget. your call was born nih provided $16 million of research for those with down syndrome. with more than 400,000 americans that's less than $100,000. 1.5 million live with autism which receives 243 million. fragile x is funded at 46 million with an estimated 50000 living with the disease. with additional funding for new and innovative research could take place. 's ambitious longitudinal
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cross-sectional study. several layers of information and 500 typical individuals, this research helps understand why individuals with down syndrome are protected from some medical diseases will highly predispose for others. launches help those with down syndrome but millions of others with life-threatening diseases through the potential development of therapeutic tools. therefore my question is, why we dedicated more research to continue to unlock the mysteries of the 21st chromosome? where's my college to consider increased funding. the history of research related
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to down syndrome in the 21st chromosome is rich with breakthroughs in dramatic outcomes. let's go unlock some more thank you. [applause] thank you. as i mentioned we know you all have busy schedules. i want to give any of our members the chance to ask a question to do that before we excuse to i want to recognize the ranking member. >> i think you get a sense that we are blessed the strength of this institution's potential. sometimes it doesn't do what you wanted to. 's potential with regard with
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down syndrome will look at all the diseases that ih, these urge jewels, we do have the ability and the power to push the edge of the envelope. for scientific research through these jobs that we have to help make a difference. thank you for a difference you're making in this effort. thank you. . . . .
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please come and join us because i know that you will have a couple of introductions to make. the end i would say for the record that there is a lot of hugging and kissing going on in this debate, not normally what we see here.
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i want to welcome each of our panelists and guest here today. you've already been introduced so i will recognize my good friend from colorado the last constituents that wanted the opportunity to introduce them to the committee. the gentleman from colorado is recognized. >> i would like to begin by thanking you and the ranking member for holding the series and recognizing the efforts to study the link between down's syndrome and alzheimer's disease in search for a cure. i'm honored to introduce ms. michelle president and ceo and cofounder of the global down's syndrome foundation in denver colorado and doctor espinoza the director of the
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linda institute for down's syndrome at the university of colorado. michelle served as the executive director of the foundation and was fundamental to the establishment of the institute for down's syndrome as well as the center for down's syndrome at the children's hospital of colorado and most importantly she is the mother of two children one of whom has down's syndrome. doctor espinoza currently corrects research investigating how the networks control cellular behavior and the function of organisms in cancer, biology and is leading the human project at the institute. this is the largest and most comprehensive study of its kind.
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as you can see, michelle and doctor espinoza dedicated their lives and careers to studying and advancing down's syndrome research especially the linked with alzheimer's disease and connections to cancer, immune dysregulation and heart disease to name a few. it's been a privilege to learn about their innovative research that has identified strongly between down's syndrome and alzheimer's disease. we can better understand how it progresses and why people are more susceptible to the disease. additionally, this area provides
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a valuable opportunity for us to understand how to protect constituents from developing alzheimer's disease and michelle and doctor espinoza are at the forefront of this research. thank you again for having me today and for your focus on advancing down's syndrome research. thank you for joining us this morning and we will move straight to the testimony. you are recognized for whatever comments you care to make so chairman thank you for convening today's hearing and for the work and leadership to increase federal support for biomedical research and efforts to improve the quality of life for americans with down syndrome. thank you representative dick morris rogers for all you've
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done and representatives mcmorris rogers and advocates for my organization's work and congresswoman delauro has been valuable in that. i'm a daughter, wife and mother. i'm the daughter of two immigrants, my mother from italy and my father from china and the mother of two fabulous children and patrick is a typical 11-year-old. they are all in the audience today and i thank them for allowing me to work hard everyday to improve theveryday t only forsythia but for cole and alex and many others. the genetic counselor pressured the and we continued with the pregnancy and never looked back.
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i discover the life span with not three but 15 at the time if i also discovered there was little or no clinical research adjusting. after i gave birth i found myself in bethesda meeting with the director of the institute of health doctor who pointed out down syndrome was the least by the nih and told me if you do just one thing established an academic told in this audience needs to be there. we did that in 2008 by family and i organized a summit and the conclusion was twofold. the research would not only help the 300 to 400,000 but it would help millions more. and we talked about this therapeutic leverage that my father claimed him a, so 100% wl have alzheimer's and 30% will have autoimmune disorder, and 50
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to 500 times more likely to get leukemia. it is extraordinarily rare to suffer a heart attac attack or d tumor cancer. based on the knowledge we collaborated with several other organizations doing excellent work and they support us in taking thandtaking the lead on . we've worked with good partners to simulate down research funding and after we incorporated the work with representative sessions to help start the congressional caucus with kennedy and cathy mcmorris rogers when he reached across the aisle and worked with the senators and today we are privileged to have close friends and allies and many others that supported language like the congresswoman delauro. in december of 2010 we joined
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the first ever conference held by the national institutes of child health and human development and that conference is focused on the national registries and databases into the findings were published in 2001 and were a catalyst in the down's syndrome registry. most importantly we established a pipeline on the excellence of science and they can no longer say that there is a lack of good science for the disparity of the funding for down's syndrome research. the revenue is approximately $8 million with a majority of proceeds going to research and programs reach about 20,000 people with down syndrome in the u.s. including medical care from 28 states and seven countries. we have the labs and over 140 scientists working on down's syndrome and autoimmune disorders and cancer.
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today we are ready to work with the platform to build on these breakthroughs and that allows us to recast the autoimmune disorder and i'm sure we'l we wl talk more about these findings. but now we need our colleagues to think in new ways on how to leverage these breakthroughs and consider for a moment how this can be done. if we take the comorbid -- comorbidities that would be the key stakeholders and down syndrome research and i've included them in a handout so you can see those. i think people with down syndrome stand ready to participate in the work in the enrollment to be double what we anticipated in a short
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timeframe. there's others that stand to gain from the science and we hope congress can help approach the down's syndrome research consistent with the law and the mutual desire to engage in outside the box thinking and funding in the research that is finally fulfilled. despite the advancement and there is a negative funding for down's syndromdown syndrome rese last couple of decades. this is also a significant disparity as other conditions and my written testimony also includes a kind of chart in tracking those budgets. as you can see despite being the cause in the u.s. an and world n syndrome is one of the least funded genetic conditions. from the 2001 to 2006, the nih funding for johnson on research plummeted from 29 million to 14 million despite the growth of the budget during this time.
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from 2001 to 2017 if it had increased at the same rate as the budget up or down we would be at 744 million today over those decades we are at about 350. i will leave you with final numbers. there are 30,400,000 people estimated with down syndrome in the u.s. today. live births increased in 2002 to 1961. it is more than doubled today up from 28 years in the 1980s. increased doubling lifespan there will be a relative population explosion of people with down syndrome in the united states. the number of people is getting larger, not smaller, and s and s the need. our children and adults who are american citizens deserve to know there is research funding and medical care available that allows them to reach their true potential. thank you for caring about the future and allowing me to
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testify at the hearing. thank you. [applause] thank you for your testimony and advocacy. you are recognized for whatever opening comments you chair to make. >> thank you for hosting the hearing and inviting me to testify to share my understanding on what i think is a spectacular development in the history of managing research. one in four americans will die of cancer based on the research the past five decades it remains the leading cause of death. you are also aware of the impact on our society when someone dies of alzheimer's or dementia. the number is expected to quadruple. so, clearly the nation has new
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ideas and resources to address the medical issues. what if i told you that the population of the citizens for whom this does not apply, but if i tolwhatif i told you the popus protected and they are the largest population i hope you would agree with me that it would serve a special attention. i'm talking of course people with down syndrome but have the packaging of the 46 chromosomes and not 47. it is a different spectrum whereby it is either strongly protected.
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there's much medical observati observation. his very rare to hear somebody of down syndrome died of a heart attack but they have conditions such as diabetes, rheumatoid arthritis, hypothyroidism. at the same time they are presupposed to develop and i can give you many more examples. how come down syndrome is one of the least underserved by the enterprise one would eventually disappear due to the early termination but that is not the
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case. there are four times more people with down syndrome today than in the 1950s and they've actually increased and have more than doubled in the 1980s so the most conservative estimate of 220,000 it could be as many as 400,000. many may have caused it was impossible and difficult to reverse but that is also not true. it was due to a simple intervention and given proper medical care for the practices such as surgery for those with a defect and i'm convinced with more research people will live longer and better lives.
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research has been underfunded and cannot fit under the scope however historically it has been funded by a single institute. given the potential to understand i think the time is right to investigate the many institutes. now the constant working together to address the problem is not new. back in 1998 they worked to create aids research in the epidemic. if orchestrated a large balance
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of individual institutes and within a few years the new cases started to decrease and so clearly the strategy is in the dividends. in 1998 pretty research there were fewer than 100,000 people in the usa today. there were more than 150,000 people into the research is $3 billion, 150 times more than the research. so how much longer should people wait to receive the research i think the time is now to stand ready to participate for their
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benefit of the rest of humankind. thank you and for allowing me to testify. >> thank you for your testimony. [applause] i'm sure you are aware of this he said this is the guy you've got to have and here's what he knows on the testimony so we are delighted to take the time to time and you are recognized for whatever opening remarks you care to make. >> i want to thank you for the invitation to testify on this important topic of down syndrome research. maybe to part a little bit from the comment to make the case this is an enormously positive time in our history and science.
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we have the power to understand the genes and the mechanisms that people with down syndrome have and we have the same power to understand and present. they will teach us a lot. there is no one in this room that it should ever have to suffer from alzheimer's disease. all of us are susceptible to this. i am going to make the case and investment in research and down syndrome is going to make it not just for the people with down syndrome but for all the rest of us to avoid it. how about a world without alzheimer's disease. if we don't wan want to have wa, and we very much ado, one should encourage a very robust investment for the research on down syndrome. we can prevent it and i think because of the work we do for them we can prevent it the rest of us.
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i have a number of other comments but let me just quickly say how pleased i am. when i got started in this, my colleagues told me do not study down syndrome. you are going to ruin your career because it is too complex to understand, too difficult to study. the treatments will come too late. those statements were all false. we are showing increasingly in spite of the complex biology, it is complex, genes and mechanism are being discovered and one can forecast the emergence of successful therapies. but we have problems. there's a lot of unmet needs and i want to go to this important question. what understanding the genetic basis for the disorder of down
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syndrome served not just those with down syndrome, but the population at large and i think the answer is yes. the studies positively impact the care of those who do not have down syndrome. i won't mention it again except to say discourage. imagine how those with down syndrome and their families be with the ongoing threat i can tell you it is a nightmare for which they cannot wait. some years ago, i committed to understanding what is going on here. we discovered later people with down syndrome tha have an extray of just one gene is necessary. we can target that and devise therapies and lower the expression to normal and i think
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in so doing we would prevent alzheimer's and down syndrome. that investment has to be thoughtfully and carefully designed with a consideration of both private sector as well as nih. we have enjoyed so much from the foundation under the leader a great friend and great advocate and great champion for the support. the global down syndrome foundation, the national down syndrome society, the alzheimer's fund. the increasing role has been highly significant. not long ago that research was a priority and that changed substantially with the establishment of the working
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group recommended by congress in 2006. we are very grateful for their interest and support for down syndrome research. while with this investment, with this recommendation came a new energy for down syndrome research among the manifestations we can see now are the new initiatives to identify biomarkers and track alzheimer'attractalzheimer's inn syndrome. support under a public-private partnership i of a clinical tril and prevent alzheimer's disease and down syndrome. and we are very grateful that the recruitment to the directorship, terrific research and somebody we look forward to working with. so i ask congress to build upon its existing efforts to accelerate the pace and scope of the work to enable the unprecedented success and i
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think the committee for the chance to testify. [applause] >> next we would like to go to mr. frank stevens and advocate on down syndrome research and on behalf of the families that do with the issues you are recognized for whatever opening comments you wish to make. mr. chairman and members of the committee, just so there is no confusion, let me say that i am not a research scientist. [laughter] however, no one knows more about
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life with down syndrome and i do. whatever you learn today, please remember this. i am a man with down syndrome, and my life is worth living. [applause] sadly, across the world, a notion is being sold that maybe we don't need research concerning down syndrome. some people say prenatal screening identified down syndrome in the womb and those
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pregnancies but just be terminated. it's hard for me to sit here and say those words. i completely understand that the people pushing this particular final solution are saying that people like me should not exist. that view is deeply prejudiced by an outdated idea of what some syndrome. seriously, i have a great life. i've lectured at universities,
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acted in an award-winning film and an emmy-winning tv show to speak about the value of inclusion in making america great. i've been to the white house twice. i don't feel i should have to justify my existence. but to those that question the value of people with down
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syndrome, i would make three points. first, we are a medical gift to society, a blueprint for medical research into cancer, alzheimer's and immune system disorder. second, we are an unusual power of [inaudible] a study shows people with down syndrome are happier in society at large, truly happy and that is worth something.
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we are giving the world a chance to think about choosing who gets a chance at life. so we are helping to defeat cancer and alzheimer's and we make the world a happier place. is there really no place for us in the world? is there no place for us in the nih in the budget? on a deeply personal note, i can't tell you how it means to
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be my extra chromosome might be the answer to alzheimer's. it's likely that this one day could heal memories, my very life. this is hard for me to say, but it has already begun to steal my mom from me. please think about all those people that you love the way that i love my mom. help us make this different. for you and the ones you love, fund this research. let's be america, let's pursue
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answers, not anal solutions. let's be america. let's make a goal to be alzheimer's free come an, not dn syndrome free. [applause] before we proceed to questions, i want to say in your testimony
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you answered every question laid out and thank you very much for your testimony thank you for being here today. i want to move first and referro how dramatically you discuss this, the lifespan for people with down syndrome has decreased in the last three decades. can you elaborate more for a reason and how much has been due to research and how much has been due to the changing conditions and how we approach people with down syndrome. >> thank you so much for the question. this is making available to people with down syndrome what we were already making available to the rest of us.
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when i was a brand-new pediatric resident i went to work one day and was told there is a little girl in this room. she's 12-years-old with a low-grade fever, i went to see her and it was clear she had an acute appendix. eight hours went by and they came in again and said we are not sure. they waited 72 hours until she nearly died. and what was her problem? she had down syndrome and they just were not willing at that time to take seriously the rights of a person down syndrome
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had two great medical care. i will never forget that incident. it's changed my life. i submit to you we are doing for people with down syndrome what we've been doing for others. yes, there are problems, and guess we know how to measure the hormone levels more effectively treat infections, but if all those are true with the biggest breakthrough so far it is bringing those people home, putting them in school and trading the issues the way they should have been treated all along. >> i agree with everything that mmy colleague said and i would like to add that there's a lot of low hanging fruit and i'm confident we can find others that have a massive impact in the lives of people with down syndrome.
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one example shows the immune system leads to these conditions and exhaustion like the example of the disease but the aspect of down syndrome can be [inaudible] if we were to invest in more research, there are drugs that can be repurposed after the proper testing so i'm very optimistic for the big dividen dividends. >> i want to address the question. you have seen dramatic changes. what are the most important
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changes you would like to see the quality of life for people with down syndrome? >> one we would like to see is better healt healthcare to funds research because people like us are born differently and need better care because like i said in my speech to, these are the diseases that we need to try to
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cure. >> i would kind of echoed doctor thomas lee and doctor espinoza. i think one of the advances that ironically only kind of finalized in the 1990s as the deinstitutionalization that the overwhelming majority were put in the institution institutionsh were inhumane and as they said bringing them home, allowing them to stand on the shoulders of the civil rights activists of the 60s and 70s including senator tom harkin than they were able to actually live a longer life and finance doctor espinoza said, with additional research we believe that barrier can be upwardly mobile and then
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the quality of life. i think the quality of life is the number one concern that i as a parent have and can't be here in the community. first and foremost, if you suffer from bad health, everything is secondary. so all stages of life that are in native to the tory doubling their lifespan, this is the first generation who will outlive their parents and that is a scary thing when we close our eyes and leave this world we want to make sure they are safe and then the quality of life that includes education, jobs, all these things that other organizations are fighting for. but i am right there on the healthcare and research. >> my good friend, the ranking
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member of the subcommittee. >> thank you mr. chairman for a powerful testimony. we have the opportunity to listen to people that are experts in the field and in their own minds. i wanted to ask a question for o subcommittee followed advances in cancer immunotherapy very carefully. and they are exciting night night now for the researchers looking at the way that we harness the power of our own bodies to deal with being in the noon from these diseases. down syndrome has an adverse effect on the immune system. can you tell us about your discoveries and how the research is similar or differs in advances for the cancer
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immunotherapy backs some are trying to fight a diseas the die cancer but it sounds like you're research could help the file system with an individual with down syndrome so that their own body is attacking itself. i am not a scientist, but is that accurate, and what could other researchers learn from your work and how would you are requesting in this research capability added to this?
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if we used all fighting off an infection or tumor. they could also produce a small tumor [inaudible] in the times but it's not needed but in the case coming back that's why people have so many
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conditions. it can attack the pancreas or diabetes. you could have all these conditions that we see more of what people with down syndrome. can we live with this, yes and they have members of the system that attack tumors when they prevent that attack they block the restraint of the system so there is an obvious connection to the people with down syndrome we may find a way to speak
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[inaudible] >> in terms of the research that you are looking to increase, is that an area that you are looking at, what are the areas you want to focus on in terms of this additional research is this an avenue for additional research? >> i don't think that should be the only area. we need an approach where we can look at the constant connection for a lot of different things. for me personally, it is looking at this particular aspect. >> we have our own experts so my
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good friend, doctor harris for whatever questions you care to ask. >> thank you for calling the hearing. mr. stevens, i've been in congress for seven years, that is the most probable testimony that i have heard. [applause] >> i graduated medical school in 1980, and there's a reason this is stuck in the institute of childhood diseases. 19801988 was basically a childhd disease because we were taught to children witas children withe didn't live very long. they had anomalies which at the time were difficult to treat surgically with high mortality rates, and it spawned an era that we started developing things like prenatal testing, and it's a good idea now that we
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can measure this and scientist -- disease and illuminate the disease through elective abortion. i think that is something we always have to be careful about when we look at the disability communities and try to solve the problem and we are having ongoing debates about the end-of-life care and the disability concerns. we just have to be thoughtful about that. on the nih funding and how great a job they do we keep doing what we do and maybe give them a little more money that the perception is correct more than just a little bit and it needs to be done wisely and needs to be thought of outside of the box.
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there is a reason why and i have a sheet here. how much they spend on various diseases, and i think it was pointed out that for hiv we spend $2,500 in research per infected individual and if you estimate the number of people living with down syndrome 250,000 which is a low estimate, it is $111 per year per person. 111. you spend 20 times more per person than we do. they do have to be pushed by a committee like this to say how could you have missed these discoveries whether it is a mere
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knowledge he, how could we have missed this connection and not invested in that? you may not do this because this may be our purview to figure out how to solve the problem do we do if just by urging them to look at it because to ask for $300 million, you could add more funding or say we are going to increase funding every year anyway should we just earmark them to do this approach and i would suggest the latter makes more sense in it easier to do. where do you think we changed our mind about this to say in
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the down syndrome research division how do we convince the conventional scientists to think outside of the box? >> i have no perfect formula but here is what i would say. science is so powerful now that were the nih to pay more attention to this and look across the field with down syndrome research to identify the gaps in understanding, to define priorit priorities and eh the bridge between discovery and targeted development and clinical trials if they were given the opportunity to pay attention to the science that's their come up i, then the net rd
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be funding. the result of the nih that pays attention to what is already there and empowered to make it better would be fantastic. i think that is exactly right i need to hear from the people that study immunology. these mechanisms from making a difference and causing problems in the alzheimer's disease brain. this chromosome and the things it creates are a wealth of information across the institutes to change the game. so, ask the nih to pay attention and define priorities and close the gaps and you will see a change. >> my good friend from california.
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>> thank you mr. stevens for your compelling testimony to the subcommittee. all you have accomplished in your life is very impressive and yes in your life and all of those have failed to do and is truly worth living. individuals living with down syndrome or in that society and many in the societ of the sociew to recognize this and that gold has not always been kind. families are skeptical of the government-sponsored research
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involving the down syndrome. as a result, one of the issues that has been brought to my attention for the advocates in california is many families that have a down syndrome child are hesitant to sign up for the down syndrome patient registry because they are concerned that the government doing too much about themselves and their personal lives. what would you tell the parents of children with down syndrome to encourage them to sign up and participate in the research? >> there is no need to be afraid because i know he can find this. we have the right to celebrate who we are and like i said in my
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speech, we are men and women with down syndrome and i know that our lives are worth living. >> the connection between down syndrome and dementia, alzheimer's pathology was recognized in the brains of individuals in the 80s and it's been almost 40 years that it's passed and only now is the research getting the attention that it deserves. we have a baby boomer generation that are now into their 50s and 60s and we still have no drug to treat and many across the country are still unaware or unable to make the diagnosis.
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why do you think that it has taken too long to embrace this? >> i want to say that the medical community suffers in the same way the general community suffers. if people with down syndrome are just different somehow if their needs are not as important as other people, then why would you bother helping people with down syndrome? i don't want to mitigate the difficulties in diagnosing. there are no therapies right now but i can say in the many years that i've been invested in this for a long time there was pushed back that even in spite of the green pathology and the cut in
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mission this wasn't the same thing. the reluctance to accept this realization is to consider carefully the livelihood and well-being. to make a diagnosis of somebody that starts off a little bit differently, but that is all changing. i think there is a change in the way people think about down syndrome.
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partly it is recognition similarities over the personho personhood. the committee has the chance. every practitioner in america knew that this risk was there. i think that would be very positive. there are three inhibitors for dementia in down syndrome patients. do you know why? >> about 14 years ago, we had the inhibitors for alzheimer's disease and that is the last major breakthrough apart and in
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fact it was larger than that for 25 years ago. they are out there and available to treat. i think they are underutilized and it is also fair to say the effects may be different and people witthanpeople with down n in the general population. but the bottom line that you need to hear the billions of dollars of investments were not yet there with these treatments for alzheimer's and my argument is here is a chance for people with down syndrome to change that. my great friend from the state of alabama for any questions she cares to ask.
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>> thank you mr. chairman for this hearing and all of you on the panel for sharing your information and mr. stevens for your personal testimony. to highlight the importance of the biomedical research and development is truly fascinating to learn how it could potentially translate to certain cancers and disease to name a few ads have already been discussed today. i would like to recognize your two sons buck and charlie, please stand up. [applause] the constituents of mine from
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alabama i'm so proud to have you here to share your personal story, and i have the opportunity you met buck on the floor yesterday. i got to see first hand the personality and love of life. thank you for sharing the day with me yesterday and i'm so grateful that you are here. [applause] as a mother myself, i am particularly touched by your personal testimony. every life is precious and i want you to know that i am with you and support you. i am also deeply troubled by the reports out of iceland and denmark and other places. they seem to be down syndrome free by 2030 by means of
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abortion. i want you to know i am unapologetically pro-life and i will always fight to make sure protections for life under our law here in the united states every baby should be treated like the miracle that they were created to be. ..
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>> >> it isn't that proposal we shall try a separate proposal. so this possibility for prenatal treatment. and to be very cautious about intervening with these possibilities. so you can have insurance.
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>> and don't have much time left but can you expound on the timeline? we have already gone over the progress but what technology and resources and advocacy is essential for the next critical breakthrough over the next 20 years? was any specific research or study?. >> the technology is there the ideas are there. we need a concerted effort
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to solve these problems. and if you insist on it it will happen so just to make it clear we know with respect to alzheimer's we know what to do and when to do it and who to do it with is just a matter of power will. with a specific example now we have developed a very promising model that it eliminates the effects of the extra chromosome. we hope to file that on the molecule very soon i hope we could do more for studies that could happen within two years. the right now we don't have funding for that. so i want to say it is a rich time for us with great promise but we will need your help.
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and and and to heat up the argument and i would argue what we are hearing with down syndrome is true across the board so the timing is set to use. >> i have gone over my time. i really appreciate you doing this. >> and things your excellent staff helping us to identify the topics. >>. >> thanks for this incredible hearing especially to frank for your powerful testimony that i
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have some powerful people with me from my home state as well. i want to introduce j and and also maureen gallagher the executive director of the massachusetts down syndrome congress. but most of all i want to introduce you to kate. please stand. [applause] she is one powerful advocate. i met her when she came to my office and signed me up as a co-sponsor and we share a love of politics and though this is a very bipartisan effort. she is just an inspirational young woman in a meet so
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many young women across my district and i am delighted to have her here today. we also share a our first name but also something not so great statistically she has a chance of alzheimer's i have lost family members because of that so doctor, what idiocy as a possibility to isolate the gene and the connections if you can talk more between the much needed research for people with down syndrome and the connection to alzheimer's?.
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>> we know lot of genes may contribute to but the gene specifically app is necessary for alzheimer's and down syndrome if we target it to eliminate the products we can prevent alzheimer's and down syndrome and to our parents so all of that thinking about alzheimer's research one brain is from the visit there is a familial form if only the one gene is present so the message is a focused
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approach that sees the bridge of the we have learned in the general population to focus on that and pay attention to that any serious way and by doing so we basically find a way to prevent alzheimer's disease. in the whole population not just down syndrome but therapeutically their other genes that make a difference with the population in general they play an important role it isn't only app but we want to program a robustly addresses those jeans because we're facing an epidemic. >> i want to quickly say
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thank you for your comment about rebuilding the pipeline of science it is so important for down's syndrome with just transitional relations on its own and that is important but additional good things that can come with our concerns we're debating the budget potentially removing federal dollars out of federal spending there was a proposal to cut nih by 22 percent and was rejected by this committee. can you talk what a 22% reduction would book like?. >> i can definitely speak on behalf of our affiliate's.
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off -- shimbun be devastating to millions of people but with down syndrome community even furthermore, pounded it continuing on this trajectory with the budget of 2018 that tracks with a cut it drops at 20 million we were at 29 in 2001, founded what that has done for the lack of children and adults. so i am so appreciative to every single one of you. everybody says this is important for the health of all americans to gain or increase the of budget at nih or hope another increase
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of fair share of funding to help people with down syndrome first and foremost, and then alzheimer's and cancer and others would be fabulous. >> i yield back. >> emma say i am being very indulgent. [laughter] but i will gently of monished my friends on both sides please refrain asking the question two seconds before. with this is the exceptional hearing and we appreciate your testimony we will be running a little late for gore want to make sure betty has an opportunity to ask one set of full questions so we will go little bit longer and want to offer any closing remarks so with that
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i now go to my good friend. >> i echo the comments that this has been amazing and i opening. watching her go through this process they do have a few questions and thoughts but to say to the families sandy advocate to represent a force that has been laboring just to get to this point. thank you. i had a challenging pregnancy told there'd be no hope for my kid no treatment even if she was born and breathing but we decided we wanted to give her the best chance and i was told by
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some many doctors this won't work. and things that were not factual. i think their hearts for in the right place but the static mindset of those that our different so that baffles me we talk about diversity but it is on every tv commercial but this is such an example there truly are differences we can decide we will truly celebrate these differences by a treating them just like anybody else or i google your rice land comment and my stomach turned we're talking from moving the ball forward with nih funding to capture the attention and do
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everything we can but we need to know hardly moved the ball forward because ultimately that is why it gone where it has prenatal screening is great but they are not accurate. and they make life changing decisions based on these. how to remove the ball forward in society or truly celebrate diversity? think you've had to face this and a battle this to get through these hurdles thank you for doing that but those to go toe to toe with colleagues how we change this in the
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communities? but true change will come from the hearts and minds in our communities and how to be a fact that change?. >> that was an amazing statement and everything is true. we talk about people with down syndrome to be differently able to. as a community we have an obligation to advocate in washington d.c. but also every where we are. just talking to a young doctor who son goes to school with another child with down syndrome has a completely different idea than the doctor practicing 30 years ago. by including our children we
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all help our kids get jobs than they are proving themselves as role models and we support a lot of people in the performing arts and that makes the huge difference to have them out there really does make a difference and then they start to see a person with down syndrome not only as a human being thought but does that blond cutie girl from the state so we have to do that as a community with fabulous local organizations across the country doing
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that and we work with them. >> eddo know how to answer the question but if the national academy decided physicians needed to take seriously how much of a problem food does it affect with the authoritative study it could change the practice of medicine across the country and i could recommend that. >> we have this experience people waiting for years but they were not doing research with down syndrome.
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because those observations are fascinating. so we have created a diverse group of scientist says scientists will come. >> so to the point for the record this has done a lot and i happen to be talking to make a difference they are up over 28 percent in the points are well made with those decisions that are made. >>.
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>> with a very important and powerful all hearing thank you for coming so far. >> we trackball they longways. >> thank you for your powerful testimony. my music teacher and her husband with that dentists in el paso. bringing in any to the house
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and started playing the piano when i was three years old. she lit up my life and it taught me so much. we had fun playing together and she made my life so much happier. ion so happy to see you here. >> i also have a sister. so wanted to ask you the relationship with multiple ottawa new diseases if you find any evidence of the connections of down's
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syndrome and multiple sclerosis? as relates to diversity we have young people who are transgendered a huge gap of people with color relating to a down's syndrome eliminating the barriers. or how this diversity plays out with people of color and transgendered individuals and the standard of care. and i want to increase the budget into the billions with that life-saving institute. to help shape the world in terms of diseases and it is important that we don't rob peter to pay paul.
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with one research program because brilliantly and eloquently told us we have to tackle everything. >> but with down's syndrome is the largest population without a risk at all. we should mention that we can tell. but hashimoto's or type diabetes but without going into that technicalities so
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those molecule's are different so we will need more research to understand why. as an important area for us. and for those people love down syndrome of african origin it is lower. and with that african-american community. so it is actually higher. and because of religious
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beliefs. and with that incidents. with a population. into have no research of that area. >> how do we get funding for more research? [applause] >> i have no more passion than the ranking member. on a bipartisan basis we will continue to do that.
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after one dozen years of flat funding not shoot toward a particular goal but a process on a regular basis and should be a national investment. and i am very proud of my ranking members i assure you when we negotiate our friends on the other side are there. >> so while we increase the funding we also looked at where the gaps are to increase the funding where these gaps are that oftentimes we don't do. >> we're already exchanging notes. >> go-ahead.
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[applause] and i just want to point out it is very unusual coming here at the very beginning staying here for the entire meeting we have other members to avast questions take that as a complement with that testimony. and you have spent very hopeful. >> mr. chairman and the ranking member and the staff thinks for putting this together. also to the families that are here.
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>> so i am the last one. assert to feel that testimony. and with those on the -- founding documents with a right to life. and then to feel pressured to terminate. and that you and your husband chose not to and i don't think you would be here or your family would not be here. that is a very powerful thing i had no idea of the
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research being done so thank you so much. so you'd have said the number of times of a focused approach for a concerted effort. but what strikes me is a unifying message you think of the cancer moonshot. you think of the original landing the man on the moon concept and i just wonder
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with the synergies. is there a way to communicate this so we get this then serve the urgency that you described? or a tremendous bang for the buck so we can advocate with nih or cap -- colleagues in congress?. >>. >> and so then so friends will finals creative ways.
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and then we go quite a lot. but then every cent is budgeted. so what about that initiative? so in that agnostic way looking at both sexes. and it would be very difficult for them. >> and the point you make in 2006 there was a working group established so has there been anything since then? but in 2006 congress
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asking for an effort i think change the game. alatas happened since that time so to find a champion as a singular person drove the taskforce to research the landscaper drove in focusing with alzheimer's and down syndrome. ended is multiplying. i would ask you to say now and harvest those wonderful
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ideas live snake get a better place for them and the rest of us. a sashayed down syndrome initiative walking across that the nih level. and then to explore further. not just with down's syndrome but the rest of us. if you bring attention to the issue great things will happen. >> this is extraordinary. and those that enable the medical profession to do we
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do in the person understanding their wide range of abilities and how the change people's lives. but since so many respects i would ferry much like to get information back with the consortium is doing and get the idea and i know the platform and how that could be possible under the consortium? how we can move so we know exactly where we know the gaps are and how to
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ring period -- in courage that. and how that could be applied to the human trisomic project. so one last comment, at the moment the funding is six and a half million dollars. that means we are robbing peter to pay paul and that has to be an understanding of why i proposed of doing what we do and how we looked
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at fraud and abuse and we do not do attribute that to the budget. so the funding of the nih that is something very similar to a accelerate that biomedical research with that mechanism looking at fried and abuse why not allow us to use that mechanism? we do a lot of things that the federal level. redo roads and bridges and all kinds of things but there is nothing more important than saving
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people's lives. we are all blessed. but to have the ability to save lives. and to connect the dots. with the overarching goal. and to be a profound obligation of responsibility. you have that moral responsibility to carry up the mission. and to do that with those types of resources.
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[applause] >> she is endlessly creative. it is a lease for a good cause. said to think be advocates so is day very remarks that congress is not worth things begin. and we have all done an extraordinary service by educating this committee
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with expert medical testimony. i've had a great privilege to chair this committee over three years and they all participated in committee hearings but never one quite like this or powerful so in my home state favorite philosopher is will rogers. we alvaro are ignorant but just over different things. so this is where we were not as well-informed as were we would like to be. also thanks to the of committee and with the most intensity on both sides of the aisle and that is a good thing.
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and i want to huge eliot we're listening very carefully to what you have to say. andrea very careful to make decisions and when there are gaps in the free half-hour collective way the subcommittee will figure out a way to add money to do the nih and if my colleagues in the senate want to do. we will take this into consideration. thanks for taking the time it is a disruption to your day. clearly you are the star of the show.
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no wonder your advocate extraordinaire but one of the most moving testimony is i have ever heard. not just the technical expertise but those questions that we wrestle with in that you highlighted. also to the gentleman for spending your time and how you ended up specializing in how you would be an academic when there wasn't much in the way of resources with contributions. and how to take a tragedy to turn that into a triumph to
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make it meaningful for the country to be extraordinarily proud of what you have done. so with that i will attend the hearing but thanks to each of you for coming. [applause] [inaudible conversations] [inaudible conversations]
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. >> why is the house taking up the senate version of the budget and the key differences?. >> by taking of the senate version
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