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Understanding 9/11tv Down Syndrome Hearing CSPAN December 23, 2017 12:20am-2:42am EST
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heritage foundation distinguished fellow lee edwards chronicles his 60 year involvement in the conservative movement. >> i met joe mccarthy for my father and it was something of a conflict to him and he was a hill fellow well met if you like the party and he liked a drink or two and as long as you didn't talk about communism you could ask for more fun guy to be with but it was very serious about that and he was also someone who did not take advice very well. he consequently said things and even did things that hurt because of anti- communism for some time. >> q&a, sunday night at 8:00 eastern on c-span. >> at house hearing for down syndrome research members of congress testified about their experiences as parents of children with the genetic disorder. other witnesses discuss how research on down syndrome could
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lead to brakes used in other fields. congressman tom cole shares this to our 20 minute hearing. >> we will go ahead and being in the meeting and the chairman will join us in a few minutes. i don't to keep the other members ready. before we start i want to recognize my good friend the gentleman from arkansas with the purpose of an introduction. >> thank you, mr. chairman. if it pleases the committee i would like to first of all disclose that sometime around 11:00 o'clock i have to depart early for a previously scheduled meeting but i do want to take just a moment to recognize a
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young lady in the audience today in each one of my colleagues have been provided a nice glossy bio of this young lady for the benefit of the rest of the audience and for hearing purposes to recognize mary would form an now she is in the back -- [applause] mary is a freshman at the university of arkansas. [applause] we don't have to holler sue here and we don't have to call the hawks today -- but given our record in sec right now we probably shouldn't be calling the logs right now but that said the information provided to each of my colleagues so states this is a very special young lady doing very well in her college studies at the university of arkansas and while she is not on the dais today and not one of the people testifying she has just a terrific story so i
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commend her biographical information to each one of my colleagues and i want her to know how honored and pillaged we are today to have her in our audience. mary, thank you for how you present our great state in this cause and welcome. [applause] thank you, mr. chairman. are you back. >> thank you. good morning. my pleasure to welcome you to the committee for the hearing to discuss the state of science for down syndrome research. this hearing is timely as october is down syndrome's awareness month which is the type to stand awareness of the accomplishments and abilities of people with down syndrome. today we will have two panels of witnesses in the first panel includes three fellow members of congress who were tireless advocates for improving the lives of individuals with down
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syndrome. the second panel includes researchers and advocates who are committed to expanding our knowledge about down syndrome and related disorders improving the quality of life for americans with down syndrome. research on down syndrome is increasingly important because of the number of births of babies with down syndrome increases in the lifespan of individuals with down syndrome expands we are likely to see a large increase in number of americans living with down syndrome. research targeted at further understanding this disorder will contribute to improving the lives of individuals with down syndrome. additionally, down syndrome research has the potential to contribute to our knowledge of a variety of other diseases and disorders that affect all americans. we will hear more about this exciting research today is pleased to introduce the witnesses to our panel and it seems odd to read your
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introduction, mr. chairman, but i will do it. esther pete sessions as chairman of the house committee on rules and i'm proud to say i'm his vice chairman on the committee. he is the proud father of a young man with the name of alex we all have met on many occasions has down syndrome. mr. sessions has been a passionate advocate and leader in congress for people with disabilities and the lead sponsor he worked tirelessly to enact the family opportunity act of 2006 which gives states the option to create medicaid buy-in for low to moderate income families with children with disabilities. he's a cochair of the congressional down syndrome caucus serves as the advisor to the president for special olympics in texas and served as a board member of the best buddies international and all of us know him here is one of the outstanding leaders of congress.
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[inaudible] represents illinois 17th congressional district and the cochair of the democratic policy and communications committee. she's also the cochair congressional down syndrome caucus and again as distinguished member with an extraordinary record. i will introduce kathy even though she's not here. kathy is the eastern washington chief advocate in congress as chair of the house republicans conference which is the fourth highest ranking republican in the house and the highest-ranking woman in congress. in 2007 she gave birth to cole rogers. cole was born with his albany 21 and inspired her to become a leader in the disability community. she is also cochair with the down syndrome caucus and played an instrumental role in ensuring passage of the able act in 2014 which created tax free savings accounts for empowering individuals with down syndrome to invest and empower their untrained future. michelle is the cofounder and president and ceo of the global down syndrome foundation as well as the executive director of the
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anna and john jc foundation which is the largest private funder of grants for down syndrome related research. the doctor espinoza is the executive director of the -- yeah, okay. institute for down syndrome and he's also a professor in the department of pharmacology at the university of colorado and shoots medical campus school of medicine. doctor william mobley has a distinguished professor and neurosciences at the university of california san diego. he also serves as the executive director of the us csd is down syndrome center for research and treatment. mr. frank stevens was awarded the quincy jones excellence in advocacy award by the global down syndrome foundation in 2016
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as an advocate he spoke on all over north america and europe promoting the inclusion of individuals with intellectual disabilities. as a reminder to everybody when the regular panel gets up here there will be star -- of course i have the stars in front of me and i'll pay for that later i'm sure but when the expert witness panel gets here we will be operating by the five-minute clock but our colleagues here obviously have very busy schedules of their own. i will allow them to give their testimony is to open it up probably for any comment or question. we won't hold them to the normal rigor of our routine so they can get about their business. with that, mr. chairman, it is a delight to have you here as my good friend and i now recognize the strong voice for those with disabilities across the spectrum in our country and the gentleman
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is recognized for whatever opening remarks he would care to make. >> chairman paul, thank you so much. i'm delighted to be before you not just -- >> i forgot i wasn't paying attention in my good friend the ranking member had an opening statement so i apologize very much for that. i apologize to my friend. >> thank you very much mr. chairman. i apologize to my colleagues as well but it's a delight to have you here today and it is a distinguished panel and we really do welcome you to the labor hhs subcommittee and look forward to your testimony because a heartfelt thanks for your dedicated work in collaboration with this wonderful, wonderful community and a generous community and the support of research and effort to look into down syndrome. i'm also pleased, as well, to welcome our second panel, doctor mobley, doctor espinosa and i want to recognize michelle president and ceo of the global down syndrome foundation. what an enormous impact on the lives of people with down syndrome that you made the research, medical care,
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education, advocacy and michelle, her family is with her today, mom and dad, in-laws, daughter sophia, son patrick, and i have to say mr. chairman, i will -- her mom is from naples so i've got to recognize my own roots in this effort. it is wonderful to see you again. ...
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>> as a witness is made clear the potential for scientific breakthrough related to down syndrome has ever been greater than it is today and those breakthroughs are so important with individuals face higher health risk including additional risk of congenital heart problems and vision problems and in addition those affected by down syndrome have elevated risk of dementia and alzheimer's into the written testimony all of the manifestation of alzheimer's is present in the brain from those by age 40 by age 6090% of those with down syndrome will suffer the effects of dementia those are heartbreaking statistics for
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their families and all of us and let's make our goal to be alzheimer's free at the same time individuals with down syndrome are more likely to have hypertension or heart attack. and with the population as a panelist can attest those individuals who have down syndrome could help to identify treatments or cures that continue to kill millions of americans including cancer and cardiovascular disease which is why i have the honor to advocate and include report language in the labor hhs bill to encourage the nih to explore a trans-nih nih initiative to better understand the molecular, taylor and physiological mechanism for those born with
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the trice nominee 21 chromosome. that is important work that should not be silent from the single nih institute so that promising research crosses a wide spectrum of health conditions to be pursued of each of the research discipline that presents an opportunity for scientific advances to improve the health and quality of life and possibly to discover those that affect families every year. our panelist calls this therapeutic leverage i hope we can use this to improve the lives of individuals with down
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syndrome as far as millions of others to suffer from delegatin delegating -- debilitating diseases. i just have to make reference at this point which is with $34 billion with a 2 billion-dollar increase we have not kept pace with the biomedical research our budget has declined since 2003 adjusted for inflation. so with that our work is cut out for us as individuals with down syndrome in the scientific discoveries we need to take a look at the investments for the federal government and welcome to my colleagues into the panel that
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follows. [applause] >> thanks to the gentlelady for the testimony i apologize but i want to start once again with the chairman of the rules committee with the and also a very good personal friend you are recognized. >> and to those committee members who are taking their time to attend this hearing thanks to each and everyone of you i come to the table today as the father, member of congress that is interested in policy that is good for a lot of people and for america and i come to you today to give you insight for what the
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chairman and ranking member are doing today to open eyes and ears of people across this country who have recognized people in their community, maybe they go to their church or a neighbor but opens the eyes of the general public how important each of the people are who have down syndrome. they are persons and born just like you and i that were selected in a different way by god to be special people and some refer to the missing jewels very much not only to be respected but be included in the general attributes of society to make your life better. i think what you will hear over and over but a recognition of congress to turn not only their resolve into making life better for them but helping all people so i will tell you my son who is
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23 years old cannot be here today we want to and smu football game he had a chance to be there he works for home depot so the business community has caught on there are attributes about each of our people that might include them in a work relationship but today we are talking about a number of factors including how the nih could be more involved in the research and advancing the things we know that exist within our down syndrome community and prepare all of us for the future but there are facts and factors about our advancements that make life better. you will hear from a very dear friend of mine who is been my
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advisor the guy that i prayed for because he makes advances and what he would tell you in 50s the average lifespan is nine years old. in the 80s it was at 25 now almost 60 that is because the attitudes of the american people including the medical community who looks at a person to think that perhaps they did not have the tools to adequately take care of them or perhaps a bias of the intellectual ability or maybe from their own bias of not really understanding the importance of that person but by you taking the opportunity to hear our story you will see there are people that are behind me all over our great
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land families that work in the down syndrome society when a new baby is born will make calls to say is i have done many times this is a gift and an opportunity as a parent to accept a relationship with a special person to try to grow them that only through a lifetime of activity that we could better their lives and so many others. while alexander is an eagle scout he taught each of those boys about life and the opportunities as any scouting experience that they have but i will also tell you now at age 23 does not remember one
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day of scouting. some of the greatest memories he cannot even remember so he tells us we need to turn to research not just the medical community but to nih who can look at the general population of down syndrome people and began working on those intellectual areas not only of the brain but the receptors that allow the brain to function and talk back and for so that is the specialty type of work as members get into and i encourage you to please understand what is behind us here today is embodied by the cochairman of the down syndrome caucus. but please know how important
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today's hearing is to thank each and every one of you as a look at this committee i see not only colleagues that people who recognize that research and development pushing the nih interactions we think are important help them to not only develop their content and lastly we are very dear friends and i have seen her six different times as we talk about issues the nih handles they need $300 million more per year to give them a better opportunity to grow the scientific community of young
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people who have gone to college and maybe give them their first taste of opportunity to be a leader in this area for us to grow our young people so not only with the opportunity to discuss down syndrome but overall with a pot of money to offer seedling that would be helpful. my thanks to each of you at only for your kindness but as you make tough decisions about the direction of this country and i trust not only will you do that well but this body will support your activity by asking enemas consent anything in writing would be available today. >> i suspect young alex
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learned something from his dad who was also an eagle scout good to have you my friend. i just want to point out for the record my colleagues know this but we are quite often accused to be very partisan in congress sometimes that is legitimate but there are things that bring us to together and this causes one of them i am pleased to see a bipartisan delegation to advocate on behalf of those with down syndrome and their families my colleague is recognized. >> thanks you in the ranking member for having us here at hosting us in the beautiful people behind us the advocates of medical professionals and those who are here with down syndrome and taking the time today. back home in my state of illinois mostly world we teach
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our own kids to make sure we are lifting each other up to build strong communities to make sure everyone has a chance to succeed no matter where they come from so it is important to me we treat everyone with value and in that capacity i am proud to be one of the cochairs of the congressional task force because it is the right thing to do it is a pleasure to be here today. i have met wonderful families and children and adults with down syndrome through the task force. one of my favorite stories in 2014 when just about everybody sitting up there the day we voted for the able act a colleague brought a young lady on the house or if you are
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under a certain age we can bring children on the floor with us. instantly i had a bond with breanna and later found out she had some root in illinois so we were together we will put the card into the voting booth to say do you want to press the yes button? and it was that very vote that took us the number we needed to go over the able act so the whole gallery went not long -- not send it was the best vote. so i still keep in touch with her family i know most people know this already but for the record i hope what we
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understand about down syndrome that when somebody walks into the room they light up and they live long happy successful lives one week into his new job we are pleased to hear about that but also that is leading to this debate so while the national institutes of health has seen tremendous growth funding has been somewhat flat so just yesterday i spoke with brad who said this entire family while they have made a full recovery she is still having a
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rough go so this is mine's after her diagnosis and is still struggling to walk as a result. her dad has to carry her to the table or to the restroom. because they have a weaker immune system. there is little research into that part of the conditions of today's testimony will show wider so important to fix that people with down syndrome have remarkable differences with their health compared to the rest of us in the ranking member mentioned that but some of the biggest health threats are naturally resistant to all forms of cancer, almost never suffer heart attacks and high blood pressure is almost unheard of.
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so that may help scientists to fight cancer or address heart attacks additionally to help those in the longer and healthier lives. i did not know in the 50s the average age was only nine years old. so we are making tremendous progress but we need more. they live well past their 60s. talk about dementia and alzheimer's with your own son's memory already only in his 20s. but right now 100% of evil with down syndrome will show signs of alzheimer's by the time they are in their 40s. to make this as a top priority and really do believe was a stronger commitment from
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congress these are some of the issues to tackle together. this is something that certainly does not need to have republican or democratic label so to be in a partner i am pleased to be here with my colleagues and i yield back. >> we have already done a formal introduction but if you forgive me note for the record what a delight it is to have you here and i once described the chairman as somebody who knows how to throw a punch with a smile she is extremely effective but this is a cause
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where she reaches across the aisle to play a significant role of the able legislation it is a delight to have you here. >> thank you so much chairman and ranking member to hold this hearing on the potential for research of those with down syndrome. not just them but millions of others as my colleagues have pointed out i am thrilled to be here to be in a room that represents the down syndrome community. my older son cole was born and tested positive for the extra 21 chromosome today is a happy and healthy fifth-grader mastered his multiplication tables and his classmates want him to be on the team he is in
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cub scouts on his way to becoming an eagle scout and loves to play basketball without research would not have the opportunities he does it begin when doctor downey 1866 a brilliant english doctor laid out the groundwork of a rich history of dramatic breakthroughs. leading to the discovery humans have 46 chromosomes but the individual with down syndrome has 47. in 2000 international team of scientists catalog the approximately 329 genes on the chromosome 21. and in fact the alzheimer's gene is associated with the 21st chromosome.
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to dedicate my time to advocate for more research to improve outcomes to increase opportunities for those born with down syndrome. today there is still so much more to discover. 50% of babies born with down syndrome are born with a congenital heart defect although not a case of suffering a heart attack have a higher likelihood to develop nile leukemia although they do not have solid tumor cancers and thanks to improved medical care 80% of adults live beyond 60 compared to 1960 on average only nine or ten years old. this is a genetic increase of life expectancy however almost every individual develops alzheimer's or dementia. although substantially increasing the budget to the
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work of this committee makes up less than 100 of 1% of the total budget the year he was born extremely dollars was provided for those with down syndrome but today it is 28 million. that is less than $100 of research per individual and by comparison 1.5 million live with autism cystic fibrosis and an estimated 50,000 people living living with the disease across the nation. with additional funding innovative research could take place like lowball down syndrome project that is ambitious cross-sectional
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study thousands of individuals that this research will help us understand why they are protected from some medical condition while also for others but millions of others through the potential development of new diagnostic therapeutic tools therefore my question is why are we dedicating more research to continue to unlock the mysteries of the 21st chromosome? studies that incorporate much needed collaboration a history of research related to down
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syndrome in the 21st chromosome is rich with breakthroughs let's go and unlock some more. [applause] thank you mr. chairman. >> as i mentioned earlier we know you have busy schedules but so before i went to recognize the ranking member. >> we all get a sense that we are blessed to be a part of this institution and the strength of this sometimes it doesn't do what you wanted to do and looking at down
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syndrome or all the diseases that health agencies hi -- cdc we do have the ability and the power to push the envelope for scientific research and what we have to make a difference. >> anybody have comments or questions? >> so you are excused thanks to each of you for being here. [applause] you have some very passionate and powerful advocates for your cause on both sides so
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give us a second. we will rearrange. now please come and join us for your introductions. [inaudible conversations] [inaudible conversations] for the record there is a lot of hugging and kissing in the audience today. we don't see that very often left back.
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[laughter] i went to say welcome to our panelist you have been formally introduced i will forgo that other than to recognize my good friend from colorado who has constituents here having the opportunity to introduce them to the committee. >> i would like to begin to thank you in the ranking member for holding today's hearing to recognize efforts to study the link between down syndrome and alzheimer's disease and search for a cure. i am honored to be here today to introduce the president and cofounder of the global down syndrome foundation in denver colorado and the executive
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director of the 224 down syndrome at the university of colorado. serving as the executive director of the and john foundation what is fundamental to the establishment of the institute at the children's hospital of colorado most importantly the mother of two children one of them has down syndrome currently directing research that is investigating how the gene networks control cellular behavior with organisms and cancer biology additionally leading the human trisomy project this is the largest and comprehensive
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study of its kind. as you can see they have dedicated their lives and careers to study and advance down syndrome research especially the link with alzheimer's disease and the connections to cancer to name a few. so with that innovative research that has identified so people with down syndrome have significantly increased risk to develop alzheimer's and to study this connection. and better understand why certain people are more susceptible to the disease. this area of research provides
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a valuable opportunity how to protect constituents from developing alzheimer's disease. michelle and dr. espinosa are at the forefront of this research. and to focus down syndrome research. >> thanks for joining us this morning. and now you are recognized for your opening comments. >> so chairman and ranking member for your work of leadership with federal support with biomedical research to improve the quality of life for all you have done and to be great
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mentors and advocates in the congresswoman has been invaluable. and from my mother and father from italy and china. and they are here with their mom and sister from england here working hard every day. when i was pregnant with sophia i had the amnio the genetic counselor pressured me to terminate and we never looked back we inserted her a gift so i discovered the
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lifespan was 50th at time also no clinical research so shortly after i gave birth i met the director of national institute of health and pointed out to me that it was the least of the genetic conditions that if you just do one thing establish the academic home and science needs to be there so we did that we organized the scientific summits first we were shocked not only to help the 300 or 400,000 also that therapeutic leverage that my father claimed so 100% with alzheimer's 30% will have autoimmune disorders or also
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to get certain types of looking you but it is very rare to suffer a heart attack. or fall to a cancer. and then to take them the din this issue and two's simulate funding and after being incorporated to help start that congressional caucus and of course kathy mcmorris rodgers. we reached across the aisle and today we are privileged to those who have supported language to highlight that disparity and in december 2010.
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held by the national institutes of health at the nic hd. and those conference findings were published 2001 as a catalyst called ds connect. and they can no longer say that there is a lack for the disparity. the revenue is approximately $8 million then to reach 20000 people from 28 states and seven countries have labs and over 140s scientist to keep up with the autoimmune
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disorder and cancer. today we are ready to work with that platform that allows us to we categorize it as the autoimmune disorder so i'm sure we will talk more about these now we need our colleagues to think in new ways to think how this could be done. then it would follow at least ten institutes and i have included them in the handout and people with down syndrome are ready to participate that doctor espinosa is doing from what we have anticipated in a short timeframe.
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we hope congress can help effectuate the approach to down syndrome research consistent with 21st century to engage in outside the box thinking with funding into the research. despite advocacy there is negative for flat funding over the last couple of decades this is a significant disparity in my written testimony is tracking in those budgets. the leading cause down syndrome is one of the least funded genetic conditions from nih the annual funding for research on the 29 million to 14 despite significant growth in the budget during this
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time. 2001 through 2017 it increased at the same rate we will be a 744 million over those two decking so i will leave you with these final numbers there are between 30,400,000 people living in the united states today it is now 101,691 the lifespan has doubled from the 80s double the relative population explosion in the united states. the number of people with down syndrome is getting larger and so is the need. they deserve to know there is research funding and medical care available to allow them to reach their true potential.
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thank you for allowing me to testify. [applause] >> thank you for your testimony and advocacy. doctor espinosa you are recognized. >> thank you chairman and members for hosting this hearin hearing. i am here to share my understanding of one of the most spectacular developments in my research. despite massive investment of cancer research it is a leading cause of death. also the impact of the disease on society. and the cost is $250 billion per year.
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so clearly the nation and what if i tell you those do not apply? not only to protect it but the largest human population. if you agree to deserve special attention. those that have the 46 or 47 chromosomes and it is known as trisomy 21 it is the spectrum for the major medical condition so these
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observations with these observations but but for instance on the other hand on the other hand. [inaudible] and i could give you more examples. but how come din on -- down syndrome is one of the least understood by the biomedical community? perhaps many thought that would disappear with the
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screening and early terminations but that is not the case. the life expectancy has more than doubled so the most conservative estimate of down syndrome but there could be as many as a couple hundred thousand. but people thought it was difficult to reverse but that is often not true. but that is due to those interventions with the proper medical care. and with that hormone management.
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but down syndrome research has been underfunded but this area has to be funded by a single institute on development. with the obvious potential to advance or understand alzheimer's and cancer and leukemia, the time is right to think of and initiative to involve many institutes. >> we caught them working together. >> and also for aids research. it is an epidemic and with
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those centers. and dave that is caused over that work. so the strategy of investment. >> and to create an office for aids research there are fewer than 100,000 now there are more than 150,000. how long to the resources? i think the time is now. to stand ready for the benefit
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of humankind. thank you for allowing me to testify. [applause] dr. i just want to say i am sure you are aware but one of the first people i talked to was peace sessions he said this is the guy you have to have make sure he comes and shares what he knows so we are glad you took the time to calm and you are recognized for your opening remarks. >> thank you to the chairman in the ranking member and the esteemed members thank you for the opportunity to testify on this important. so to make the case this is the enormously positive time in history to have the power
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to understand the genes and mechanisms to cause problems that people with down syndrome has we have that same power to prevent they will teach us a lot absently know one that should ever have to suffer from alzheimer's. we are all there. we are all susceptible and i will make the case and to make it possible not just with those with down syndrome before the rest of us to avoid it. what about a world without alzheimer's? one should encourage a very robust investment of research. only because of the work we do for them to prevent the rest of us i have a number of other
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comments that that my colleagues told me do not study down syndrome. please don't do that you will reuben your career because it is too complex to understand too difficult to study in treatments will come too late. those statements are all false. to show increasingly in spite of the complex biology genes and mechanisms defined and one can confidently forecast the therapies of children and adults. so to go to this important question understanding the
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genetic basis serve not just those with down syndrome but the population at large? so those studies positively impact those who do not. i will say it is a scourge of madge and how those in their families view the threat of alzheimer's and it is a nightmare. that is from what they cannot awake we discovered in mouse models of down syndrome and extra copy of one tree one -- one gene is necessary we can target that jean lower the
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level and i think in so doing to prevent alzheimer's disease and down syndrome. that investment has to be carefully designed and i would argue with that consideration of the private sector as well as nih. was a great friend and advocate and champion the global syndrome foundation the national down syndrome society the increasing role has been highly significant and not long ago it changed substantially with the
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establishment of the down syndrome working group recommended by congress in 2006 and we are very -- very grateful for congress. so with this recommendation came in new energy among those manifestations to track alzheimer's with those with down syndrome public-private partnership and we are grateful to the down syndrome researcher and we look forward to working with. so to build upon the existing for to expand the scope of the work of unprecedented success
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and i think the committee for the chance to testify. [applause] >> next to frank stephenson outstanding advocate on behalf of down syndrome research and the families that deal with the issues. >> mr. chairman and members of the committee just so there is no confusion let me say i am not a research scientist left left. [laughter] however no one knows more
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about life with down syndrome than 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 the notion is sold that that maybe we don't need research concerning down syndrome. they say that prenatal screens will identify down syndrome in the womb and those pregnancies
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should be terminated. it is hard for me to sit here to say those words. i completely understand for people that push this final solution say that people like me should not exist from the outdated idea of life with down syndrome. i have a great life and have
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lectured at universities. with the award-winning film and tv show. and spoken to thousands of young people about the value of inclusion of making america great. i have been to the white house twice. i don't feel i should have to justify my existence. but to those who 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 research. for cancer and alzheimer's and immune system disorders. and second the unusual powerful source the harvard -based study has discovered that people with down syndrome as well as their parents and siblings surely that is worth something that finally we are
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giving the world a chance to give them a chance at life. so we are hoping to defeat and to make the world a happier place. is there really no place for us in the world? is there really no place for us in the nih budget? on a deeply personal note i cannot tell you how much that means to me that my extra
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chromosome could be the answer to alzheimer's. that that one day it could steal my memories and my very life from me. but it has already begun to steal my mom from me. please think about all those people that you love the way i love my mom. make this different if not for me and my mom but for you and the one that you love fund this research.
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let's be america not iceland or denmark let's look at answers not final solutions. let's make our goal to be alzheimer free not down syndrome free. thank you. [applause]
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>> before we proceed to questions i will say your testimony you answered every question you laid out. thank you very much for your powerful testimony and being here today. >> in your testimony referred to how dramatically the lifespan for people with down syndrome have increased in the last three decades. what is the reasons for that increase due to changing conditions? this is making it available to people with down syndrome that we were already making available. i will tell you a story.
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as a pediatric there is a little girl in here who is 12 years old could you investigate to figure out what is going on? i went to see her she had acute appendix. i felt terrific i could make a difference as a brand-new resident and i could make a diagnosis i called the surgeon and they said we are not sure. eight hours went by they came again and said were not sure. they waited 72 hours hours until she perforated and nearly died. and what was her problem? she had down syndrome. simply unwilling at that time to take seriously the right of a person had with great
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medical care. that incident has changed my life so i submit what we found for others it is yes we can treat infections but to bring them home to put them in school to treat medical issues the way they should have been treated all along. >> i agree with what they said that is possible and i am confident that could have the impact in the lives of people
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with down syndrome. one example of those that look at the particular aspect with the aspects of the new system but this could be modulated so now we are testing that possibility for those conditions. but to invest in more research of course that would be testing for safety and efficacy. >> so you have seen dramatic changes obviously what are the most important changes you
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have seen in terms of quality of life for people with down syndrome? >> i would like to see better healthcare because nih needs to fund this research because people like us who were born differently because like i said in my speech alzheimer's those are the diseases to try to cure.
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>> i do echo the doctors that one of the great advances that was finalized in the early '90s. that is a dark past but that overwhelming majority of people with down syndrome were put in institutions and to say bring him home the simple rights activists but then they could actually be a -- live a longer life. but it can be for the mobile
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but the quality of life is one concern that if you suffer from bad health everything is secondary so getting great healthcare at all stages and new territory with adults. this is the first generation of people who will outlive their parents. so when we close our eyes we want to make sure they are safe so healthy and quality of life that include but we are up there with the healthcare and researc research.
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>> now my good friend from the subcommittee. thank you for powerful testimony. vintage but the subcommittee is following advancers of cancer immunotherapy. and it is very exciting about researchers who are looking the way harness the and to be immune against and to have the answers and with the advances.
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>> son research tries to power of the system but it sounds like your research could help calm so their own body isn't but but for that research capability add to the effort?
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>> to also be at risk of leukemia but we have thoughts but then to come back biologically biologically.
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[inaudible] so can we learn from this? yes. they have numbers that attack. when they are successful they can prevent that attack because there is a block so there is an obvious connection there. and with those protective aspects we may find out a way.
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>> the potential is there and terms of the research but what what you like have the additional resources? >> but i do think we need the approach and look at the concert connection my research team in denver is looking at this particular avenue. >> thank you.
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>> we have our own experts also so i will give my good friend. >> the most powerful testimony i have heard in seven years. [applause] >> this is stuck in the institute of childhood diseases. we were taught that children with down syndrome did not live very long. they had anomalies were difficult to treat surgically. so that spawned the era to start developing things like prenatal testing and now it is
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a good idea that we could measure this to find this disease then as you suggest we can eliminate it through elective abortion. and i think that is something we always have to be careful about in the disability communities to try to solve that problem with the ongoing debates of end-of-life care we just have to be thoughtful about. because you follow on that hearing yesterday on nih funding. so in general global issues it needs to be done wisely and
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and i know why. the affected but for the hiv-aids spending $2500 in research perfected individual. if you estimate those living with downs is 250,000 which is the low estimate $111 per year per person. twenty-five times times more per person is spent on hiv-aids and in 1981 when one when i graduated medical school and had a similar reputation. why is that? i will suggest we don't think outside of the box. but they do have to be pushed how can you mrs. with these discoveries that you talk
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about whether immune knowledge he how can we miss this connection? this may be our purview to figure this out but do we do this by urging nih to look at this? now you can add more funding and then you hear mark nih the latter one probably makes more sense to look at these new avenues. how do you think it is best done and how do we change the mind of nih?
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you have the alzheimer's institute and that down syndrome research division how do we convince thinking scientist science is so powerful now that we want nih to pay attention with the advancement of research to identify gaps and understanding and priorities with discovery and therapeutic targets and to give the opportunity and then net
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result is more funding. forget about your marks the result of nih who pays attention and is empowered to make that better would be fantastic. and those mechanisms make a difference so this chromosome is a wealth of information to change the game ask them to pay attention ask them to study it and change. >> i yield back.
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>> thank you for your compelling testimony to the committee all you have accomplished is very impressive. with your life in those that is truly worth living so as highlighted today those living with down syndrome are a gift to society not because you have the extra chromosome but the extra heart many are too slow to recognize this and has not always been kind to people with down syndrome and for that reason and that they are skeptical of government
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sponsored research so as a result one of the issues that was brought to my attention to advocates in california that a down syndrome child is hesitant to sign-up for the patient registry because they are concerned about the government knowing too much of health and personal life. what would you tell young parents to encourage them to sign up and participate in the research? >> i would tell them there is no need to be afraid because because this is our life. it is our blood. we have the right to celebrate.
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like i said in my speech we are men and women and i know that our lives are worth living. >> the connection between downs was first recognized in the 70s and alzheimer's was discovered in those brains in the 80s it was almost 40 years that have passed and only now is this research getting the attention that it deserves with a baby boomer generation that is now into their 50s and 60s with no drugs that are approved to treat dementia and many primary care providers across the country are unaware or unable to make that diagnosis
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for alzheimer's with those in down syndrome. why has it taken so long for the medical community to embrace this connection? >> it is a good question. i want to say the medical community suffers in the same way the general community suffers. they are just different somehow their needs are not as important then why bother? i don't want to mitigate those difficulties to the general population or say we have had such great success there are no therapies right now but that in those years i have been invested in this to have pushback even his fight of pot
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on -- pathology i was told by a director at enright mind -- nih it is not the same disease but it is. it looks different a little bit but is fundamentally the same so that really locked in to accept the realization is partly of our reluctance to consider carefully the livelihood and livelihood and well-being and it is a little more difficult to make a diagnosis summary that starts off different cognitively it is a sea change a few years ago that we should be thinking of treatments and one scientist said i never even heard that concept to treat down syndrome?
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really? so partly it is recognition of the similarities and it is getting the word out. if they all knew that this risk was there and to be very positive. >> britton has approved three inhibitors for dementia and down syndrome patients. >> so we had the fda improved that is the last major
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breakthrough it was 25 years ago those are drugs that are out there and available to treat sympathetically. but i think they are underutilized but it is also fair to say those side effects may be different than in the general population but the bottom line that you really need to hear despite those billions of dollars invested are not yet there were those disease modifying treatments so my argument is here is a chance for people with down syndrome to change that. >> you are generous to recognize that left left. [laughter]
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>> thank you chairman for convening this hearing and all of you on the panel for sharing your information and also your personal testimony but to highlight biomedical research and development it is truly fascinating to learn that that could translate with certain cancers just to name a few. i would like to recognize a couple people. [applause] they are constituents of mine
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from alabama we are excited to have you here as advocate and share your personal story and i had the opportunity to take them down with me so they can see firsthand the infectious personality loving life so thank you for sharing your day with me yesterday i am grateful you are all here. [applause] as a mother myself i am touched by your personal testimony every life is precious i support you. i am deeply troubled from the reports that say they can be down syndrome free by 2030i
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want you to know i am unapologetically pro-life that there are protections that every bb should be treated like the miracle they were created to be so talk about research capabilities i think it is important we have assurances that they don't go down that slippery slope however indirect the practice may be this is important and that we touched on this but this is a very important thing. >> as executive director in
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the case of down syndrome with 140 scientist at could potentially lead to that to try to study that extra chromosome but that possibility for prenatal treatment and then to be cautious with those possibilities of modern research so you can have that assurance.
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>> can you expand on the timeline? we have gone over advancements but what technology or resources do you look at for the next breakthrough? and what if any specific research or study from the adult population? >> the timeline and the technology is there we need a concerted effort to solve these problems and if you
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insist upon it will happen. so we know with respect to alzheimer's we know what to do it is just a matter to give a specific example now under nih funding a very promising compound that down syndrome eliminates the effects of that extra chromosome. the molecule as well as against. we hope to file that on that molecule very soon i hope it will do the first studies with down syndrome could happen in two years but it will nod if not funded and right now we don't have funding for that. i want to say there is great promise to key up the argument
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to direct attention to this possibility and what we are hearing across the board i would say timing is up to you. >> i have gone over my time but thank you for this powerful hearing today i really appreciate you doing this. >> you are now recognized. . . . . for as much
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time as by may consume. the presiding officer: without objection. mr. franken: thank you, mr. president. this is my final speech on the floor of the senate. i have come here many times. we come here to cast votes and debate issues that are important to our states and to the country, we introduce and explain legislation, and we talk about our states and what we learn on our latest visit to a community health center, farm or small business. what we don't talk about all that often, mr. president, is the work of all the men and women on our staffs who make all of this possible. i've been fortunate
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