tv Washington Journal CSPAN December 6, 2013 7:00am-10:01am EST
harold varmus gives an update on camncer research. later, dr. thomas insel. >> we have lost one of the most influential and profoundly good ever beings that we will share time with on this earth. he no longer belongs to us. he belongs to the ages. good morning. the world is remembering a south african leader. this headline this morning from "the los angeles times" on the passing of nelson mandela. here in washington and around the country, flags are at half staff to pay tribute to africa's first black president. president obama has ordered
flags to remain at half staff until monday. it is friday morning. we are going to take your calls and reflections on nelson mandela. our phone lines are open. republicans, (202) 585-3881. democrats, (202) 585-3880. and our line for independents, (202) 585-3882. mail,an send us an e- firstname.lastname@example.org or you can send us a tweet, @cspanwj. [video clip] i am not a saint unless you think of a saint as a sinner who keeps on trying. i am one of the countless millions who drew inspiration
from nelson mandela's life. my first political action, the that thing i ever did involves politics was a protest against apartheid. his works and his writings. the day he was released from prison, a gave me a sense of what human beings can do when they are guided by their hopes and not their fears. globe, iany around the cannot imagine my own life without the example that nelson mandela set. as i live, i will do what i can to learn from him. president as he paid tribute to nelson mandela and the tributes coming in from former presidents and world leaders, including this from bush. resident -- former president bush.
i watched in wonder as nelson mandela had the remarkable capacity to forgive his jailers following 26 years of wrongful imprisonment -- setting a powerful example of redemption and grace for all of us. it was a man of tremendous moral courage to change the course of history and his country. no has written a piece. he has been a forceful president in my life going back to 1979 made its first anti- apartheid effort. all tooople related easily to the subject -- the subjugation of ethnic majority of minorities from our point of view. over the years, we became friends. hiss mesmerized by maneuvering as a leader.
that is bono, honoring the man who could not cry. theassed away yesterday at age of 95. let's get to your phone calls. michael, riverside, california. caller: i want to ask c-span for something. i appreciate nelson mandela's story. i followed it through my life. i want to ask that you guys do not become as the regular tv stations. we have toied, but deal with the issues at hand. when i am dead, i am food for the maggots. host: john is next. good morning to you. i echo president obama sentiments about nelson mandela. reagan had mandela, as well as bush, he was considered a
terrorist. it is funny how when we look , martinthese folks luther king and mandela, two of humans in theble century. they were looked upon during their lives, not so much as the heroes that they are now. just remember that. host: john, thank you for the call. this piece from "ast." why mandela? what exactly makes nelson mandela so special? apart from the fact that he emerged from 27 years in apartheid prisons bearing so little malice. he insisted on reconciliation being central to a truth commission in order to heal wounds caused by years of bitter racial hatred. bok rugby a spring
jersey in a bold bid to unite the nation behind the mainly white south african team. he stepped down after just one term, unlike too many world leaders who cling to it until they -- it destroys them or the nation they are leading. next is james, grand forks, north dakota. republican mind, good morning. -- republican line, good morning. caller: i am concerned about the individual.f any there is a godlike reverence for the sky which worries near. when he mandela, she used to necklace them with burning --. when i was a kid, when apartheid in south africa was in the news,
now there has been a blackout of news in south africa. itso not know, especially neighbor, zimbabwe. they have had 25 years of black rule. the population of whites has gone from 300,000 to 30,000. there has been a redistribution of wealth in the stealing of their farms. -- and the stealing of their farms. many have been killed that resisted. we are not allowed to hear about that. millions are on the verge of starvation because of the loss of the industriousness of the whites there. in south africa, there is a return to barbarism. johannesburg is the rape capital of the world. i want to know what is going on about the situation in south africa now. host: thank you for your call.
a giant for justice. nelson mandela was born in 1918. the world is mourning mandela. our nation has lost its greatest son. this from "detroit news" --a passionate peacemaker. former governor while the reflecting on the legacy of the leader. wilder reflecting on the legacy of the leader. this is from former president jimmy carter. rosalynn and i are deeply saddened by the death of nelson mandela. the people of south africa and human rights advocates around the world have lost a great leader. his passion for freedom and justice created new hope for
generations of oppressed people worldwide, and because of him, south africa is today one of the elitist -- leading democracies. people have to wake up. people have got to wake up. obama and mandela are the same. people disrespect him and he does not lash out at them. people have to wake up. we have a good man in front of us. when he is gone, we will wish we had him back. he is a good president. we have to wake up america. thank you. host: john is joining us from los angeles. good morning. caller: thank you for taking my call. againstandela was also israeli apartheid. georgia.
good morning. caller: what we can look at is these countries were -- during this time. both of these countries had brutal racist regimes based on the color of skin. the united states is now, they are embracing this again because president obama is the president. see southke to africa, the blacks in south africa, they embrace reconciliation. this is what nelson mandela had nonviolent spirit we have a president here that is hated instead of love. nelson mandela he was loved. the only people that actually is --resident obama it president obama is black people and white people who are not racist. it was brutal what they did in south africa.
the south africans and the united states african-americans went through the same thing. i hope someday the white people can come to reconciliations. this is the headline from the chicago tribune. a powerful voice of reconciliation. uniting a nation and captivating a world. if you're are just joining us or listening to us on c-span radio, we are getting your calls and reflections on the passing of nelson mandela. next is joe, new york, good morning. caller: it is amazing that a man could suffer so much and come out with so much good and so much charity in his heart. i salute him. i have to raise a question. ago, four to six months neil armstrong, the first man to walk on the moon. i am astonished, but the president of the united states
did not go to neil armstrong's funeral. how is that possible? you have an explanation? host: i do not. i know he did issue a statement on the passing of neil armstrong and we cover the memorial service that took lace in his native ohio. this is the headline from the wall street journal. fromn mandela rose militant anti-apartheid activist to become the president of a democratic south africa and a global symbol of racial reconciliation, died at his johannesburg home following a link these day and a pretoria hospital. he was 95 years old. our nation has lost its greatest son. our people have lost a father. another statement from another former president from bill clinton who issued a statement yesterday afternoon. the world has lost one of its most important leaders and one
of its finest human beings. hillary, chelsea and i have lost a true friend. his three will remember nelson mandela as a champion for human dignity and freedom for peace and reconciliation. cecelia, georgia, gore morning -- good morning to you. good morning. i wanted to say how much, how very much i was moved by the activity, black-and-white people dancing for joy, for a soul that all ongoingtant to quests for justice and freedom in this world. thank you nelson mandela. thank you everyone who sees there is more to humanity than the color of your skin. thank you. that is all i want to say. host: thank you for the call. "the new york times."
nelson mandela, the man who led a people to anti-apartheid. he did not achieve this on his own. the movement he led, the african african national congress was sustained by lesser-known activists and martyrs, many of them did not live to see the day of victory they had dreamed of for so long. usa today has a number of tributes from world leaders. although we were political opponents and our relationship was off on -- often stormy, we
could come together at critical moments and solve the many crises that arose during the negotiation process. theelson mandela became first democratically elected black president of south africa, here is a clip. [video clip] men sacrificed their lives so that we could be free. our dreams have become realities. humbled and elevated by the order and privilege that you, the people of south africa, have the stowed on us. bestowed on us. we will lead our country out of the valley of darkness.
we understand that there is no easy road to freedom. we know it well. can achieve success alone. we must act together as a united people for national reconciliation. for the birth of a new world. let there be justice for all. let there be peace for all. let there be bread and water for all. for each, the body, the mind and the soul have been freed to tooth -- to for fill themselves -- to fulfill themselves.
never, shall it be, that this land will again experience the oppression of one by another. [applause] and suffer the indignity of being the -- of the world. -- on so glorious a human achievement. let freedom ring. from may of 1994, that speech. all of our coverage of nelson mandela is available on our website on c-span.org. you can check it out anytime. fromquotes and statements former presidents including this from george w. bush. president mandela was one of the greatest forces for freedom and equality of our time. he bore the burden with dignity
and grace and our world is better off because of his example. the associated press is reporting a president obama will travel to south africa for the funeral surfaces of nelson mandela. details are still pending. we will hear more later in the day. this is from "usa today." death of a giant. nelson mandela, whose successful struggle against south africa's system of racial segregation and discrimination made him a global symbol for the cause of human rights. caller: i would like to thank you for acknowledging nelson mandela's life. i want to say that it is a privilege to know that in this day and time that we did have someone who would risk his life for freedom.
i understand what the young man was saying about the man who died who was the first man to the moon. that is an honor as well. been unders have oppression for a long time. we live on earth. it is those on earth who need to reconcile. we need to come together. it is an honor to know that god put a man on art such as nelson mandela. an honor to know that god put a man on earth such as nelson mandela. though we may be oppressed, we will overcome. i am proud to know that this is still america. thank you. republicans, (202) 585- 3881. democrats, (202) 585-3880. we also have a line for independents, (202) 585-3882.
nelson mandela awakened the world to the evils of institutionalized apartheid in the battle goes on. more of your calls and comments in just a moment. this friday morning. congress nears a modest -- on the budget. here the details. the details. while modest in scope, it could break the cycle of the fiscal crises and a brinkmanship that has hampered the economy -- economic recovery and driven public opinion of congress to an all-time low. and patty mary -- murray encountered last-minute resistance from houston rally leaders who had said any deal should be accompanied by an extension of expiring unemployment benefits for 1.3 million workers. has tempered
expectations for deals on the budget and the farm bill yesterday. neither issue appears to be poised for conclusion. and if there's a press conference, there is clearly no agreement on a budget from the two chief negotiators. their self-imposed deadline is next friday, december 13. sources indicated that an agreement could be announced in the coming days. speaker boehner did not say whether he would move forward to pass a short-term continuing resolution that would float the government for january 16. details available online at rollcall.com. the senate will be in session for another week after the house. the house will recess for the holidays next friday. you can watch all of this on c- span. the senate on c-span 2. moran there is joining us from
bethesda maryland. -- morgan is joining us from bethesda, maryland. nelson mandela was a living hero to me and an inspiration. i want to change people and the world in the same way that he did. how do you do that? caller: i don't know. i'll have to figure that out. he does not hold grudges. that is something i'm not going to try to do. host: thank you for the call. the white house releasing this ,hotograph as president obama who was in south africa last year. clothing these
president -- quoting the president. darren is joining us next. good morning from washington, d.c. thanks for having me. it is said that he had to go away, but the guy was 95. -- he touched on i point -- on a point. after apartheid, after he was he tried toident, make a point to not hold a grudge. he said we were all in this together. i think that was amazing. i wish our country would take
some lessons. thank you. host: thank you for the call. when people like nelson mandela pass, the whole world loses rest in peace. there is this photograph from 1994. klerk.ioned f.w. the speech by nelson mandela is part of our library available at c-span.org. times, thereington are photographs of nelson mandela a few years ago. he is not really been seen in the public since 2010. this is from july 2007 in joe's -- in johannesburg. he is surrounded by children. funeral services will be taking place in about 10 days. we want to hear from you. republicans, (202) 585-3881.
democrats, (202) 585-3880. we also have a line for independence. you can send us a tweet, @cspanwj. south africa's conqueror of apartheid as a fighter, prisoner, president and symbol is the front-page story. jennifer, good morning. caller: it is astonishing how planet of lonely earth have evolved and how satan has destroyed our lives to believe that we have control and that the color of our skin means that we are superior or inferior. it is amazing how humans cannot what is placed in front of their eyes. god places us here to be equals and to be brothers and sisters and to learn to live in and loving atmosphere. it doesn't matter if you are black or white.
that god has gift given you. we have so dumbed that down that we have jumped into an arena of thinking that we are little miniature gods. it is astonishing. nelson mandela exemplifies that. he brings that astounding humanity and love for each other out for people to understand. color does not have anything to do with who you are. this is from pet, sending in this tweet. the fight against oppression goes on. without mandela such as the oppressive voting rights laws against minorities today. list -- enrollment surge or no enrollment surge, the next obamacare challenge is a big one. how will the white house make sure people with canceled
policies get new coverage by january 1? at the rate sign-ups are going, even with the speedier and newly functioning obamacare website, there is a daft distance to peoplebefore for to five get coverage.ple thatr: it is unfortunate a few country there is people willing to sacrifice. i am talking about some white people. maybe republican, maybe democrats. it is both sides. if mandela is left in public, i'm going to make the trip to south africa and be proud of it. host: james, thanks for the
call. warsaw, indiana, tricia. good morning. caller: thank you for taking my call. we canwanted to say that nelsonrn a lot from mandela's life. watching him struggle, watching him fight what he knew was right and being oppressed and being in prison and still holding onto what he knew was right, i think that is what we have to do in america. andave to take his example carry it through every country. for us, we need to do that with our government. we need to stand up for our principles, for what we know is right. we cannot let the strife in the
things that we know in washington right now keep going on. i am an independent and i see good in both political parties. i see things i do not like them both political parties. i think we need to band together to not put the emphasis on will we canut she do to bring down the price of insurance, to bring down the price of pharmaceuticals and the affordableake it health care for everyone. that is where i think our focus needs to live. host: thank you. from the washington a couple of photographs of them -- of nelson mandela. he was greeted by britain's queen elizabeth in july 1996. theill continue to follow
passing of nelson mandela, more details on funeral services as they happen in south africa. you can check out our scheduling information online at c- span.org. based on the president's interview yesterday, the president is staying neutral about his possible successor saying that vice president biden and hillary clinton would make an excellent president. he said he was not going to touch the question. you can read more details online at thehill.com. this weekend, you can check out quarter lane, idaho in northern d'alene, idaho. here's a preview. we are in the north part of
idaho, not too far from the canadian border. the city is probably best known for the beauty. kinds ofmidst all water, lakes, and rivers. we live in the mountains. all kinds of color. to me, the story is that we have become what we needed to become. we are a city that we have thrived on mining and timber. as that one away, so did many of our jobs. hard at will are we going to be? we do not want to lose that sense of who we were as far as people and a community. we had to look at what the jobs were going to being. we are known for the tour is on we have a -- we are known for
the tour is him. we have a huge medical center. we are trying to diversify the economic base. we realize as a city, if we are not growing, it does not mean we but we have hugely, to be progressive and in the real world. at the same time, we what to hang on to the people here. i have hopes for the immunity. i do not see our culture go away. -- going away. >> "washington journal " continues. this morning on c-span's
washington journal, we want to focus on the work of nih. we want to give you the opportunity to learn more about the people behind the agency, including dr. francis collins. we appreciate you being on c- span. to be it is wonderful part of "washington journal." with basic begin questions. what is the mission, the goal of nih? the largeste supporter of biomedical research in the world. basicssion is to do science to understand how life works at the most detailed level and to apply that in terms of coming up with new insights that will prevent and treat disease. support tens of thousands of grants across the country, conducted by our world's most cutting-edge scientists in the u.s. who are working on things from cancer to hiv, two aides.
you name it -- to aids. you name it. let's learn more about the history. your roots date back to the late of thebut you are part department of health and human services. what is your budget and how many people work for nih? guest: it is about $29 billion. the number of people who work about on the campus is 17,000. most of our work is done by the grants that we give to universities and institutions all over the country. not getur money does spent in bethesda, but gets spent in those great universities where you are hearing every day about medical breakthroughs. that is because nih supported
the work. how long have you been at nih? guest: 20 years ago is when i got here. we were working on the human genome project. people were skeptical on whether it would work or not. i had the privilege to lead that remarkable team. delivered on the promise of the human genome. there is a profound implication on how we understand ourselves and for medical practice. i stayed on with them for another five years and got called back to serve as the nih director for years ago. host: what makes a good medical researcher? guest: curiosity. a willingness to take risks. to tap out approaches into the brains of other people
and not work in isolation and a compelling desire to help people. that is why our scientists do what they do. long hours forrk much less income than they could achieve in other sectors. they are determined to make a difference to the world. you: can explain on how work with similar agencies around the world? caller: i will be in a meeting with the head of organizations. i serve as the chair of that group and we will share our experiences and develop new collaborations to make sure we are making the most of those opportunities. host: a-day make sure there are no silos? -- how do you make sure there are no silos? scion was -- science
itself does not work well in silos. you want to understand biology, you need to bring engineering and physics, ofmistry, to bear on many the problems that are most challenging right now. those knock down the silos built those. internationally, things are exciting. there has never been a time of such promise. motivated touch work together. one thing that nih stands up for and will lead in every way we can is open access. we generate data and it should be available for anyone with a bright idea. host: let's talk about funding
and the impact of sequestration. this shows the impact moving from 2008 where research dollars were expected to go and the impact of sequestration. how has that impacted what nih is or will be doing in the year ahead? caller: we have never seen a more exciting time for science, but this is a historically difficult moment in terms of support of that science. agobegan about 10 years when the budget for the national institutes of health went flat and inflation, working at about three percent per year, has been eating away at purchasing power. on top of that, on march 27, when sequestration hit us, we lost $1.5 billion that would have gone to research on a wide variety of areas that i think the public really cares about. that money disappeared. that means we are down about 25% in purchasing power for research over what we had 10 years ago.
the combination of what has been happening plus sequester -- that has serious consequences. if you are an investigator in a university seeking to pursue a bold idea about cancer or diabetes or alzheimer's disease, honey get funded by the nih? you write a grant, you put your funded by you get hunte the nih? grant, you put your best idea on it, we make a priority decision and we try to find the best grant. we have been able to fund about a third. because of the deterioration in resources, we're down to the point where after sequester, only about 15% of those grants get funded. that is frustrating. many of them are getting demoralized and even discouraged
enough to give up or think about moving to another country where things are more encouraging. this is a serious problem. this wakes me up at night. are we at risk at losing this generation of scientists? this is not like use spigot you turn on and off at will. if we lose these scientists, they will not come back when things get at her. -- things will not get better. we're talking about the department of health and human services, its budget come in the research going on by medical professionals at nih. also want towe talk about the peer research that takes place in all 50 states in colleges and universities. how does that work and how do you identify where you funnel that money? guest: many of the guests that -- many of the grants that we support are sent in by
who think they have a great idea. unfortunately, six out of seven are going to be turned away. we are in such a tough spot. we try to identify areas where science is really right for further exploration. for a out a notice request for application because nih is interested in seeing more research on a vaccine for aids because we think there is an opportunity here. that is how we steer the ship. all of this depends upon the talents of the scientists out there to be bold and be innovative. dr. francis collins is the director of nih. in a recent "wall street hasnal" piece, cancer
american directly or indirectly. where are we in cancer research? what are the big hurdles? that is one of the areas of greatest excitement and promise right now. we are enormously excited about the way in which the technology is being able to look at individual cancers. it has put us in a position of being able to read out what is driving a cancer in each individual. it is going to be different depending on which person is being analyzed. pathways thate are involved in taking a good sell down a road to becoming a malignant. drugs are being developed that
target those pathways in a precise way as opposed to a chemotherapy approach which is much more carpet bombing. this is smart bombing. this is precision medicine for cancer. it is very exciting. it is transformational. ust: samantha is joining from rockville, maryland. good morning. thank you so much for coming on and agreeing to talk to all us about the importance of nih. i am an early career scientist myself. i just received my phd from the university of the miscellanea. -- of pennsylvania.
i was watching many of my friends in the graduate program rapidly wrap up their phd's and stop experiments they were working on in order to move fo rward with the way grants were being lost from different labs. andft the area of research am now pursuing a career in science policy. i am working with a public education advocacy group in the district. i was wondering if you have any suggestions for early career scientists. how should we keep moving forward in these next couple of years? it is going to remain tough, even if we reach some sort of a deal. are the voice that i am most concerned about. i am glad you are moving in
science policy. we need expertise there. many people in your situation would like to continue to do research and are finding it challenging to identify the path forward for them to do so. nih, we're doing everything we can to provide that kind of support. we are increasing the grants that are a bridge between a postdoctoral fellowship and an independent faculty position. we are making it possible for individuals that come in for their first nih grant application to only compete against each other instead of the established investigators that may have more of a track record. trying to give first-time investigators a leg up. thatl have to recognize while this is a historic downturn, the case for nih support is so strong, support for nih is so strong across parties and houses in the
congress that if we could get past this very difficult time for our nation fiscally, we should get back on a stable track and people should be optimistic that we are going to get there. week whenul that next we hear what has come forward thatthe murray ryan group, we will see an opportunity to get past what has been a real stalemate in decisions towards a solution that has bipartisan support and gets us back on a caning were sequestering be written out of history books and we can be put back on a stable footing. or thecare about health economy, because when nih does is a wonderful support of the economy with a remarkable return on investment in all of those grants that are going out to all 50 states, we get something like you to fold return in ln the first year.
this case is so strong, it has to win the day. whoof the young scientists are listening, hang in there. we are going to get through this. host: for more information on largestch has the hospital dedicated to clinical research, more than 23,000 unique patients in 2013. i want to follow-up on her point. she is studying narrow science. you said that is -- neuro science. the human brain is the most complicated structure in the universe. -- the ability to make sense out of that has seemed out of reach for most of the time that we have been studying neuroscience and biology. president obama announced a new
step in that direction. the human brain initiative, which aims a combination of research from nih, nsf, darpa, private foundations, from companies working with the international community to try to figure out how the circuits in the brain work. that is an amazing frontier to competently -- to contemplate. we can take images of the whole like pet scans and mris scanned and ct scans, or the space in between, where the action happens, is out of reach. this is a long-term investment. we should be able to figure those things out. how do you process visual information? how do you lay down a memory and her cheery bit?
-- and retrieve it? all of the brain illnesses that we know of, all of the fundamental information that we have of how the brain works is insufficient. host: we're going to focus more on cancer research, but this is a tweet from jim. the same amount on prostate cancer research as its brent -- spent on breast cancer? we invest heavily in prostate cancer research. we invest heavily in breast cancer research. great strides are being in -- in what ish of those
driving those cancers. joining us from arlington virginia. caller: good morning. i want to tell you that i had a disease. child, add never been diagnosed. and nih i went into nih kept me alive for the next 30 years with more tests. i lived closer to nih and many of the people that work there. if a problem came up, i was over there. their 30ing care of years ago. -- i had a heart transplant. live -- alivei am
, i cannot say enough about nih. host: that is an amazing story. that isstory --guest: amazing story. it is a story i get to hear every day. this is the largest research hospital in the world. a few steps away from where i am right now, two hundred 40 beds, but all of the patients who come protocols. research this is the house of hope. this is where people come when medical practices fail to find an answer for them and they come here to find out whether research can offer them something. amazing things have been done here. we also have, because you mentioned how difficult it was to come to a diagnosis, many people are out there after many years of medical valuations and still have not arrived at a diagnosis about what afflicts them.
theave at program called undiagnosed diseases program. they can come and have their records and all kinds of scans and tests done. a team of about 30 experts corzine over every detail and tries to figure out what is -- s over everyour detail and tries to figure out what is going on. that can lead to dramatic intervention that can make a difference in their lives. we are on the cutting edge. it is an amazing lace to see what goes on. all of the doctors that work there are dedicated. they could be making more money if they were working somewhere else, but they believe this is their call to public service. their desire to help people brings them here. thank you for calling. big is the physical campus at nih? several hundred acres
between wisconsin avenue and old georgetown road. there are many buildings. there are about 17,000 people who work on this campus. it is like a small town with its own fire department, hospital, obviously. an amazing group of talented, dedicated people. about 5000 of these people have doctoral level degree training in science. thatt any area of science you are interested in in the biomedical arena. do you believe that the brain has the power to defeat diseases of the body by signaling responses at a cellular or other level? the brain is connected to the rest of what is going on in the body. connection is being revealed by the type of science we do now.
we used to think of diabetes as a problem with the pancreas not making enough insulin and the liver and the muscles. adipose tissue and obesity being a big contributor, but over the last 10 years, it is clear that the brain is a huge part of this whole circuit and the more we learn about that and the hormonal influences that are even now, surprising us with their complexity. the closer we get to really understanding the disease. that is just one example. we should never think of the brain as being isolated in your head. it is all an ecosystem. host: jennifer, boca raton, florida. i am a mother in florida and i have two children. i am a mom of a two-year-old who is undiagnosed. we have been through boston children's we have been all over
the place. is one of those children they do not understand. the issues that are happening with the funding, one of the things i get intimidated from the lack of interest public funding for rare diseases. protectssomething that the rare diseases for children out there? is there something separate that aside for them to protect the research? host: what is your daughter's condition? caller: she is blind, she has lost her hearing, she is on g20 tubes. oneas recessive genes, for cdg. they are at a loss. we have been all over the place.
they have not got a clue. host: thank you for sharing your story. callerguest: you're telling a sy that would let anyone's heartstrings. nobody able to predict what the path may lead to going forward. this is the kind of thing that we would like to do better with. i am glad you are connected with those institutions and i hope they work hard to come up with an answer. in terms of your question about rare diseases, we feel that is a particularly strong mandate. rare diseases may not get commercial interest is there is a small market. if you consider all of the people that have written diseases and add them, even though they are individually about 7000 and.
about 25 million people in the united states are affected with a rare disease. that is a lot of people. of those 7000 rare diseases, there are only effective treatments for about a hundred of them. this valley of death between knowing the cause and figuring out an answer. have therapeutics for rare and neglected diseases located within the new national center for advancing translational sciences. that aims to try to find a path across that valley of death for ine diseases, working collaboration with universities and whatever it takes to come up with answers. we are dedicated to that. our clinical center, this 240 aboutsearch hospital, half of the patients there have rare diseases. this is often times the only
hope they have of getting answers to a disease that is sufficiently uncommon that most of the doctors they have seen -- have never before seen a case. we have some numbers. a comparison of breast cancer research to prostate cancer. a hundred million dollars is being spent for breast cancer prostate7 million for $800 million is being spent for breast cancer and about $257 million for prostate cancer. 10 years ago, the total budget for nih was only slightly less than it is now. it was about $27 billion. we are at $29 billion now. inflation eats away at that buying power. our ability to do research, we have received about a 25% cut.
particularly with the sequester hitting us hard last march. that is something we hope will go away with this next fiscal year. that sequester men there were about 700 research grants that we were on the brink of awarding that had scored in the top echelon of the grants that we had received last year, and we had to turn them down. have of those grants might been the next breakthrough in cancer? which investigator might have gone on to win the nobel prize that has gotten discouraged and given up? we will never know. that opportunity is gone. that is heartbreaking. we have to do everything possible to get this turned around so that does not keep happening. host: mark is joining us from ohio. morning, dr. collins. it is nice to talk to someone who understands the importance of science in our world. because io call you have been a type one diabetic
since 1964. i am healthy. i take care of myself. i understand the brain's impact on the disease. all -- i think i can help the diabetic community. couldre anyone at all i .alk to at nih i have tried to get through and have had very little luck. i think i can help the diabetic world right now. with my knowledge of the disease since 1964. guest: you are a remarkable example of how well people can do taking care of themselves and taking advantage of the advances that have happened with type one diabetes. you are telling me you have had years.agnosis for 50 there are individuals like
yourself who seem to do particularly well with the long- term consequences of a disease that carries many rests in terms of what it does to kidneys and to eyes. yourself are of interest to figure out what are you doing that has been so effective. i am sorry you have not been able to get anybody at nih to respond to your offer of help. i would encourage you to do so again. the institute that focuses on diabetes is called the national institute of diabetes, congestive, and kidney diseases. niddk. there go to the website, must be on their homepage for niddk, an opportunity to send in a query. please do that and see if you get a response. you're sorry -- your story sounds interesting. on a i went to conclude follow point. you have discussed sequestration. what about private medical
research? who is doing it and how does that impact nih? guest: we depend on partnerships with private foundations, as well as private industry. this is an ecosystem where all the participants need to be vigorously healthy for the whole thing to work. in terms of foundations, we work with many of those that are focused on particular diseases. just this past monday, delegates was here and we had a very interesting -- bill gates was here and we had an interesting day working together on hiv- maternalerculosis, health. with the private sector, if we are going to see success and developing new treatments for diseases, that partnership is the only way it is going to happen. nih contributes to the fundamental information that leads to new insights about therapy. we do not make pills, the industry has the next step in the pipeline to carry that over to the point of an approved
therapeutic. are working more closely with industry right now today than at any time in the last 30 years. both because of the scientific process -- promise and because of the knee. dr. francis collins is the director of the national institutes of health. thank you for beginning our program on c-span's "washington journal." we appreciate you coming and explaining what you do. hope people will stick around and listen to some of the institute directors for specific areas you will find very exciting. host: that includes infectious diseases, cancer, and mental health of the next two hours on "washington journal." thank you very much. we will continue with more of your phone calls. a chance for us to hear from you your thoughts about nih research. dr. anthony fauci will join us. alan is joining us from arizona. morning.i, good
i would like to talk to a doctor. can i call back? like to ask would to us had research given on c-span regarding the cancer percentage in india being about 95 per one million versus 1000 per million here in the u.s. seminar, the gentleman mentioned that the tumeric was an instrument will part of dietary supplements in india. it was derived from the cumin root, it attacks the blood supply of a cancer. it would be nice to ask the next regarding mr.up up after -- naturopathic
vitamins or minerals or things that could be helpful. bring that up when we talk to dr. harold varmus, director of the national cancer institute. thank you for the call. nancy, good morning from pennsylvania. was in my daughter continual pain as an athlete. she was finally diagnosed at the national institutes of health with an obscure generic disease. i also wanted to talk to dr. cancer research being done at md anderson, which focuses on a radio type attack of cancer cells. i am wondering if somebody might mention that. have a great day.
host: thank you, we are familiar with that research. try to focus on that. we will bring that up with dr. varmus. memphis, tennessee, good morning. democrats line. caller: thank you for taking my call. i want to speak out for the animals that are being used in research. i think that the tests are redundant. a lot of the information can be gained by other means. that sortimulation, of thing. if animals have to be used to gain knowledge in this area, then the information should be shared throughout the different institutes. rather than doing tests over and over. nobody is talking about that, i want to speak for the animals. thank you. host: thank you for the call.
we are at nih and we want to welcome to c-span's "washington southey,dr. anthony who heads up infectious disease studies at nih -- dr. anthony fauci. host: let me begin with the questions you are asking yourself and your researchers about infectious diseases? diseases,h infectious there are two major buckets. there are those diseases that are established. we essentially can predict what the domestic and global more global morbidity and mortality would be. we have research to develop diagnostics when we have them. vaccines andr therapeutics. then we are faced with the threat of new, emerging, and reemerging infections. things that we would not or could not have predicted.
we were faced with that situation in 1981 when the first cases of aids were recognized. we had never seen that and we had to get very quickly and address that from a scientific and public health standpoint. now, today it has evolved into historically one of the most devastating pandemic in our civilization's history. there are things like the threat of pandemic influenza or sars a few years ago, or the merz coronavirus. we constantly need to be on guard and be able to respond scientifically so that we can develop from a concept to an orervention or prevention treatment. that is what i refer to often when we talk about this as the perpetual challenge of infectious diseases. of the headlines from "the new york times," a story getting a lot of intention. concern from college students and parents, meningitis
outbreaks striking to colleges. we are familiar with what happened at princeton. uc santa barbara. the disease in flames the linings of the spine and the brain. guest: is a clinical diagnosis that can be confirmed by laboratory data. to outbreaks, one in princeton and one at the university of california santa barbara. meningitis is a big. that can be quite devastating -- is a bacteria that can be quite devastating. one of the students at uc santa barbara had a complication that required amputation of their feet. even though this is fundamentally a disease of the brain,the lining of the it can have a replication of these bacteria, which can cause a variety of catastrophic
symptoms and signs in the individual. a critical way to address this. for this,treatments antibiotic treatments. the critical way is prevention by vaccine. we vaccinate young people, particularly those about to go to college, with meningococcal meningitis vaccines. but there are multiple subtypes of this. the one that has stricken intonts in princeton and barbara are what we call the subgroup b of the meningococcal us. be vaccines does not contain because it has not been submitted for approval by the fda. what is happening now and will be happening in a couple of days through the collaboration of the cdc and the fda, the young students and the students in the dormitories are going to get vaccinated by special permission
from the fda and the cdc with this vaccine. subgroup.ins the b it does not happen frequently. there are only about 500 cases of midget cockle meningitis -- of meningococcal meningitis per year in the u.s. about 160 of those are from the subgroup b. it is devastating when you get these outbreaks as we have seen that princeton and santa barbara. host: are there early warning signs? what should an individual look for? the early symptoms are fever, headache, stiff neck. then you start to feel a syndrome.g flu like the fundamental issues -- it involves the brain and the covering of the brain. stiff neck.ver, and the critical issue that people -- the students and the officials at the universities --
it is generally spread by very close contact. that is why the most vulnerable people are people who are in relatively confined spaces like in a university dormitory. barracks when you have soldiers and marines and others in barracks. they become more successful -- they become more susceptible. it is spread by saliva and respiratory secretion. do not share utensils or food, avoid kissing and intimate contact, which is the thing that spreads this disease. host: wayne is joining us from washington, d.c., welcome to the program. caller: i called in when dr. collins was on. i'm not sure if dr. soucy is independent with this. the humane society is attempting to drive a movement towards alternative animal research. i wanted to come and dr. collins
and the nih for its very wereous efforts that rigorous in terms of signs in recognizing in chimpanzees -- in recognizing that chimpanzees are unnecessary for invasive experiments. they worked hard with congress panelnvene a scientific to examine this. they are beginning the process of transferring the majority of chimps in laboratories to sanctuaries which are accredited. i wanted to thank him. we need to balance animal welfare with scientific pencils. -- scientific principles. host: thank you for the call. dr. fauci? guest: we are very sensitive to the humane aspects of research on animals. research on animals is the -- is essential to the help of the
world. you have got to do it under the most humane conditions. was correct, it is clear that experiments that have formally been done in experiments that we are now looking for other ways and have found other ways to get the same answer without using chimpanzees. host: this is a tweet that wants to know would protocol out testing in one country to be accepted in another country? cutting the cost and time for drugs to market. guest: yes, but you have to pay attention to ethical principles. we do this. if we have experimentally clinical trials in foreign nations, particularly developing nations. the principle is that it has to a resulty wind up with that could be beneficial to the country in which you are conducting the experiment. to do an experiment or a whereal trial in a nation
if you got a result, it would not be relevant to that nation, that is fundamentally unethical. you can do an example -- an experiment in a foreign nation that would benefit the nation. adhere to the highest ethical principles. it could have the global benefit, including in the u.s. you cannot exploit other nations an experimental way that does not clearly have a benefit for them. is the director of the nih allergy and infectious disease program. joining us from maine. caller: thank you for taking my call. i am a retired physician. i trained at bethesda naval hospital across from nih. i have great respect for the fabulous institution. my question concerns line disease.- lyme
it seems that there has been controversy, even in the professional community. about whether there is such a thing as lyme disease. i wonder if dr. fauci could comm ent. guest: there is a disease called lyme disease. it is a disease you get from a tick bite. is named after an nih scientist who discovered what it is. disease, it is treatable by antibiotics. is controversy the caller referring to is the fact that there are situations where someone has what has been called chronic lyme disease, months and months after a possible tick intention --ute acute infection, the individual has symptoms.
the concern is what the approach or proper diagnosis for that is. -- many ever diagnosed get overdiagnosed. the question is what is the therapeutic approach? there had been recommendations for long courses of antibiotics, which a number of groups have found that that is not beneficial and can be harmful. because of the duration. it is still clearly an area of some controversy. lyme disease as a disease certainly does exist. tweet, do you know why people get asthma? guest: why people get asthma? is a complicated issue that has to do with environmental and genetic predispositions. asthma is part of a hypersensitivity response to a particular antigen that, in most people, you get exposed to it. that could be in antigen like a ,espiratory antigen, a pollen
where it would not really bother many people. most people. in those who have a predisposition to asthma, what happens is that it triggers a series of release of chemical mediators. the common denominator response is that the airways, we call them bronchioles, the part of the lung that allows the air through and can construct. asthma is a disease of what we call constricted airways. response is a constriction of those very small bronchioles. it does not allow the free flow of air and amount of the long. -- of the lung. that is why you have the wheezing sound when individuals have an asthmatic attack. the air gets trapped because of the constriction of the bronchial's. why people get it? a lot of it is generic. genetic and a is
combination of environmental and genetic. is a graduate of cornell university. what is your background? to stay atdecision nih was very easy for me. i finished my internal medicine training at the new york hospital-cornell medical center after going to medical school. after several years of training in internal medicine, i wanted to do a fellowship combined and infectious diseases and immunology. i came to the nih for a three- did research that was basic and clinical. i fell in love not only with the concept of discovery in science that has to do with health, but with the extraordinary electricity of the atmosphere here at the nih. i went back to new york for a year to complete my clinical training. a seniorhear as
investigator, a senior scientist and have been here ever since. it is an extraordinary place. the density and diversity of scientists and thought and discovery and interaction and communication is something we joke about, i would do it for nothing if i had the opportunity. it is such an exciting experience. host: we appreciate the chance to talk to you an expert at nih. president talking about aids as part of world aids day this past week. another $100 million in aids research. here's what the president had to say. [video clip] yearsworld aids day two ago, i announce an additional $35 million for the eight drug sssistance program -- the aid jug assistance program that helps people pay for medication. the need was so great that over 5000 people were on the
waitlist. we vow to get those numbers down. as of last week, we have clear that waitlist. we are down to zero. [applause] we're making progress. we are all here tonight because we know how much work remains to be done. here in the u.s., we need to focus on investments to communities that are still being hit hardest, including gay and bisexual men, african americans, and latinos. we need to keep up the fight in cities, including washington, d.c., which has reduced that innocent sections by nearly 1/2. we will keep pursuing scientific breakthroughs. i will announce a new initiative at the nih today to advance research into an hiv cure. towill redirect $100 million develop a generation of
therapies. because the u.s. should be at the forefront of new discoveries into how to put hiv into long- term remission without requiring lifelong therapies. or, better yet, limiting it -- eliminate it. , the president discussing funding for aids research. how close are we to finding a cure for aids? thet: you have to look at situation of a chore realistically. it is impossible to predict how far we are away from that. people get confused between the difference of ending the aids pandemic and getting everyone who needs to be on treatment contrary. treatment to the point where they can live a normal life. someone ins you put a sustained remission without the need for therapy indefinitely. that is the classic definition of a cure. someone ofou cure
another disease. that is an aspirational goal that is not going to be easy. one of the things you do not want to get confused with. even though we don't have a two cure, the advances that have been made with the therapy for hiv individuals and the prevention that prevents new infection is breathtaking. at the nih in the early 1980's, when i began taking care of aids patients after the discovery of the disease, the median survival of my patience was six months to eight months. that means that 50% of all of my patients would be dead in six ounce to eight months. that was terrible. today, if a person comes in in their 20's and his newly
infected with hiv and you start connotation of drugs that have been developed, you can predict they will live in additional 50 years. an extraordinary advance from basic science and clinical work. and then translation into an intervention. although the cure, telling someone you can come off your medications, is something we are aspiring for. you heard the president talk about redirecting 100 million dollars over three years to accelerate that process. that is a good thing. i was honored to be 10 feet from the president as he was making that announcement. we are enthusiastic about pursuing the science. that will be very difficult to predict if and when we get to a cure. the advances have been extraordinary. host: can use very briefly
explained what is the global fund? guest: the global fund is a multilateral organization of countries that donate into a global fund toe fight aids, tuberculosis, and malaria. it is an organization that is based in geneva in which countries put into the fund and then get partnerships with countries of high burden of aids, tuberculosis, and malaria. to treat, prevent, and care for people with those diseases. the u.s. is the largest funder of the global fund. 1/3 of theabout money. the global fund is a major component of how we address the diseases. also, there is the president's
emergency plan for aids relief, an extraordinary organization started by president george bush. this puts them billions of dollars to address the treatment, prevention, and care of hiv-infected individuals. the reason we are talking about the global fund now, this week we have had the replenishment meeting. country representatives from all over the world came here to washington, d.c. to make pledges for the amount of money that they would be putting into the global fund over the next few years. that was called the reports that -- that was called the replenishment process. host: tom from texas, good morning. caller: thank you for taking my call. , i am interested in a disease called adult leukemia. it started when i was seven years old. i had a seven that died of
juvenile leukemia. they did not know what they were doing in the 1950's. my wife lost a close friend. about three or four years later, she lost her cousin. he was only 53. he spent a year at m.d. anderson. they kept saying he was making progress and that he was gone. called two hour program "what darwin never knew." it was talking about progress they were making with some seniors at m.d. anderson. it pulled a drug off the back burner and change the dosage. you for the call. we will talk to dr. harold varmus, director of the national cancer institute, so that issue will come up. dr. fauci, can you respond? guest: there have been extraordinary advances made in the treatment of leukemia. years ago, the treatment of
childhood leukemia, a lymphocytic leukemia, have led to cure and a high percentage of young children. older haves you get different types. it is not one-size-fits-all. there is one type of leukemia, single drug. particular component of a genetic defect in the cell that leads to the leukemia. it has really turned out to be curative for what with a very devastating leukemia. as you know, harold varmus will talk more about this, the broad spectrum of leukemias, each one has a different nuance regarding treatment. host: mickey, pasadena, maryland. in reference to one of your earlier callers about using computers for research. they can do it in the animal studies.
they would do that if they could. it costs money for animals, it costs money to have the animals and to feed and care for the animals. they have to take care of their health. that is all money that does not directly to the research, but to the care of the animals. rest assured that if they could use a computer, they would. animal studies are supposed to be redundant to make sure that they are safe before they move on to the next phase. host: i appreciate the call. we talked about that earlier. any response? guest: certain animal studies are necessary. if you can substitute for an animal study and other reproach -- another approach, that would be preferable. dowe mentioned, when you that, you have to do that to the highest standards of animal care. ) one of our objectives is to look at the money nih --
host: one of our objectives is to look at the money nih spends, $31 billion, out of that, 4.5 center is spent at the for allergy and infectious diseases. from hyattsville, maryland. caller: two quick questions. there was a little on this earlier. the mix of politics and scientific research and the on- again off-again kind of thing. administration changes and stem reproductive or research, that kind of thing. themuch money is wasted by starting and stopping of that kind of thing? econdly, to dream a little -- the idea of there being a 15 member medical panel that would
actually have a huge voice in government to counter the politicians when it comes to medical research and the practicality of money spent for this research or that research. even into engineering and infrastructure and that kind of thing. i will take the response off the air. jeremy.ank you, guest: first of all, it is important to point out that the nih, throughout the years, has benefited greatly from bipartisan support within congress and by multiple administrations. unfortunately, we are at a situation now that you heard from dr. collins, in which our budget has been flat for at least 10 years. then we were hit with the devastating effect of sequestration this year, which needs to be reversed if we are going to get back on track to
what we can do for the country and the world in the arena of biomedical research. about how muchd money do you waste when there are political issues that allow you to start and stop something. not much. we are disturbed when issues that relate to some sort of ideology get in the way of what is important for science and health for the nation and the world. luckily, we have not had a lot of fat. we have people who are very much in favor of what we do. we have been very fortunate to have, for the most part, not always, total, universal support for what we do. the judgment about what we do is left up to us. two final fauci, points. there have been developments in the research with genital herpes. what have you learned?
guest: the real challenge we are having is with a vaccine that would be effective for genital herpes. there are treatments that can suppress the recurrences. one of the issues with genital herpes, you can get an acute attack and it can go into remission temporarily. ofn you get outbursts relapses of infection. that is very troublesome to the people who are infected. we have good treatments. the treatments have done much better than the vaccine research. as with many sexually transmitted diseases, we have not had overwhelming success. we have had a disappointing failure in a tight -- in a type short whilecine a ago. we have new initiatives in bethesda and with our grantees throughout the country in different universities to put
another really good, full-court press on trying to develop a good herpes vaccine. what isfinal question, the outlook for the upcoming flu season? guest: the upcoming flu season -- we have a seasonal flu every year. right now, there is nothing that looks particularly different than what we have seen in previous years. sometimes you have a very early start to the flu season. it generally peaks around january or february. we tend to get over it by the end of march and the beginning of april. you start to see some cases trickle in. seasonseeing a typical now. mostly light activity across the country. a couple of states like texas and mississippi have heavy activity. above thatyet gone threshold level. it seems to be relatively on target for a typical flu season. as we have learned over the years, the one thing we can say
about the flu is that it is unpredictable. if you look at the charts that come out from the cdc, it looks like the beginning of a typical flu season. is the director of the nih's allergy and infectious disease center, one of 27 facilities. thank you for being with us. 10 years after the completion of the human genome project, we will check in with dr. eric green, director of the institute at nih. calls on thisur topic. chris from maryland. good morning. nih, under the current sequester and you mentioned flat budget, it is time that with 27 institutes that they operate not as separate universities in terms of their i.t. infrastructure. they should start thinking about how to pool and manage those
i.t. resources to reduce redundancy and have more they confederated, internal approach. be usedthe assets can broadly and cut costs to the taxpayer. host: sam, georgia. caller: good morning. good morning to the doctor. i recently was diagnosed with multiple myeloma. supposedly, i am a candidate for stem cell research. what i want to ask the doctor is, what exactly -- why do they call that multiple miley,? -- multiple myeloma? are there any breakthroughs? host: we will check in later with the head of the cancer institute. i will bring that up with the doctor. where have you gone for treatment?
--ller: i am in the pa system in the va system. it has been very good so far. host: kent. good morning. caller: i think all these nih people missed opportunity. he talks about enjoying his job that he would work for free. during the government shutdown, that would've been a great opportunity for those people to just go ahead and report to work. because they love their work and want to help people. i am being facetious. host: jerrod, florida. good morning. --ler: how are you going doing. host: there is not a doctrinal line, go ahead. what is the difference between the hiv virus and aids?
is aids a disability? what are the differences between the hiv virus and aids? full-blown aids. is people with full-blown aids, is it a disability? host: i would direct you to the website, nih.gov. you can click on the division of infectious diseases and get more information with regard to your situation. joan, georgia, good morning. to ask i am calling about a disease that my daughter has. she has an infectious disease. really was very painful. she had to get special antibiotics.
she also has been diagnosed with lupus and or another disease. they were not sure. her bones are dying. i am wondering if these are they are or if separate and should be treated separately. your thank you for sharing story. you can get more information at nih.gov. we continue with our look at some of the leading researchers at nih. the director of the national human genome research institute. dr. evergreen. thank you for being with -- dr. eric green. completion of the this project. what is it and what have you learned? guest: the human genome project was this effort that went on from 1990 to 2000 three. it was a very large, international project. it had a fit at school, -- it
had a focused goal to sequence the human genome and read out all the letters of human gni. use that information as a foundation for understanding important features of human biology and to learn more about human disease. thatrticular, the aspects relate to heredity. that project ended in 2003. it was a successful and set up a circumstance for us to begin to use genomic information and tools of reading out dna to better understand the role that the unit plays. -- the role that dna plays. a lot has happened over the last 10 years. it has been slowed down because of some of the budget constraints. host: as you look at a risk factors for any condition that individuals may face and you study his or her dna, what have you found out? every disease has at
least a genetic influence if not an overt cause. there are differences in our dna that lead to getting a disease or giving some statistical risk. diseases, it might cause -- a single little letter -- a single difference might cause a disease. we have learned a lot because we have organized to do studies that allow us to take thousands withoutiduals, with and a disease like hypertension or diabetes, and study the dna of those individuals. to figure out which letter areerences in our dna associated with getting the disease. that is giving us insight about what can go wrong in human biology to lead to a disease. it starts to give us some ideas
about how to move forward in developing new drugs. eventually, we are hoping some of these things will lead to diagnostic opportunities to treat people using information about their own genome. host: i want to come back to that. looking at the numbers. nih's budget of $31 million. the research at the human genome research institute is about $513 million. guest: that was before sequestration. we went below $500 million after sequestration. host: what can you expect in the year ahead? guest: we don't know. we are operating on a continuing resolution that gives us last year's level until january. there is a possibility of additional cuts that would be devastating. host: a couple specific issues in terms of dna.
when a child leaves the hospital, can you determine whether or not that child is more predisposed to sudden infant death syndrome or diabetes or alzheimer's? the long-term view is will we be able to take an outant at birth and read their genome and learn about not only what uses -- what diseases they might be at risk for work later in life. how their genome might make it so that a particular drug would be a good or bag drug, or what the might be. how we respond to medications is a scripted in our genome. right now, every baby in america has genetic testing for a
small number of genetic conditions for which there can be early intervention. so you know what to protect that child or how to handle the care. that is only a few dozen conditions. now we know the genomic basis for thousands of words uses -- thousands of rare diseases. we are very interested in the will the futureiwl be like when it becomes straightforward to sequence a genome and have that information available for routine care starting when they are infants. this year, we launched a program in collaboration with another -- another nih institute at nih to develop a program that would allow us to study exactly what you described. were only able to find it at half the level we planned. host: what would you tell
congress? wonderfuly have been and investing in genomics beginning with the human genome project. been very insightful and recognizing that the u.s. could be a leader in genomics. a field that is incredibly exciting and explosive. they have been wonderful in seeing accomplishments bearing fruit. we are finding ourselves with our feet on the break. we cannot fund the research we know needs to be done to really see these clinical advances come to fruition by using genomic information. host: talking with dr. eric green, a graduate of the university of wisconsin and washington university in st. louis. background as a graduate student, i did not work on dna or genomics. in medical school, i got an
1987, the year genomics was talked about for the first time. i never heard the word genomics in medical or graduate school. doing my clinical training, it was at the time when a lot of discussion about the idea of sequencing the genome. i saw the diagnostic opportunities that could someday come to be when you could get knowledge about individual patients, genomic information. i thought this was too exciting to pass up. as a trainee in pathology, i got a chance to participate in the human genome project from day one. now i find myself at the other end, seeing the project completed after 13 years. i am very fortunate to be directing the nih institute created by the u.s. congress explicitly to lead the nih's
effort any human genome. host: silver spring, maryland. good morning. caller: doctor, how far has the research and finding treatments for lupus gone? 2012, research companies in rockville announced a breakthrough in that direction. what is the update? guest: i don't know the specific update about lupus. thatve an institute at nih focuses on autoimmune diseases. you can get information at their website, nias. what i will tell you about a disease like lupus and rheumatoid arthritis and what isne diseases, happening in genomics is it is giving us opportunities to develop studies where large numbers of individuals are being studied.
there able to look at all dna differences that they have versus individuals who do not. betweenlop associations particular regions of the genome risk forgetting that disease. there is some incredible new insights coming out. for many autoimmune diseases. ,e do not understand completely but when i compare this to where we were 10 years ago and our knowledge of where to look in our dna for differences that might confer risk for diseases like lupus, it is spectacular. i think we can really expect between now and the end of this decade remarkable advances. host: whether it is medical research are critical -- or criminal investigations, dna plays a part. how did we find out about the and i -- about dna? goes back research
many years. incremental insights about the terry material -- about hereditary material. was thekthrough hereditary material. one of the most famous years ago, wes 60 are celebrating that this year. 1953n jim -- in 1953, jim watson and francis crick described the double helix. it is the most significant discovery in biology in the last century. it was the double helical structure that made us understand how it was dna carried all biological information from generation to generation. since the 1950's, it has been better technology, new insight.
learning how to clone dna and sequence the letters of dna. figuring out how to develop strategies to read all the dna of an organism. in other words, to sequence a genome. director guest is the of the national human genome research institute at nih. tom, new jersey, good morning. caller: dr. green, am i right in understanding that with all the talk about people associating their disease with their genes, geneticave a predisposition to some problems. but it is our behavior that allows that the disposition to express itself and manifest the disease? guest: is more complicated than that but you make an important point. talking a lot about genomics and we, this is what i do when
focus on. i do not want to leave you with that everything we do is scripted in our dna and there is no influence. there are other influences. the reason we talk about genomics is because we have had a remarkable technological surge in our ability to read out the and i -- read out dna. you make a great point. some of these things give us a predisposition. that does not mean we are going to get the disease. the environment, behavior, social aspects of life, all of these things influence it. it is the interplay, especially for more common diseases, hypertension, diabetes. we know that there is an interplay. genetic predisposition but in terminal contributions. -- but environmental contributions, what you are eating, how much you exercise.
i want to emphasize that genomics is a key part of this puzzle but it is not the only part. host: from maryland, william is joining us. dr. eric green at nih. -- i wasy question is in vietnam and i can't malaria. i stayed in the field house for three months. when i came back to fort brag, i had a relapse. i am having problems. i cannot hear that well. warts growing out of me. the va cut the amount. -- cut them out. what kind of side effect or long-term effect is this? host: can you adjust that? thet: dr. fauci would be expert on that. this is an infectious disease. i would refer you to the
institute that he runs to get the sort of insight. what i will tell you to make the point about a disease like malaria, it is a complicated infectious disease. it involves not only the arial parasite, it involves mosquitoes and vectors that carry the parasite. -- of course,s there are humans. there are three genomes interacting. the human genome, the mosquito genome, and antimalarial malarial-- and the parasite genome. the pools developed for human genome -- the pools developed to read the human genome can be dna. to read mosquito we are learning about the interactions of different genomes.
that is advancing our knowledge about infectious diseases. int: what about advancement prescriptions you might get? could it be tailored to individuals based on dna? guest: this is an incredibly exciting area to look for in the coming years. is already here and now, it is called pharmacogenomics. i talk a lot about diseases. there are differences between that canls' genomes influence how we metabolize or respond to medication. in medical school, i remember being taught that you try a patient and give them this medication. if it does not work, go to a different one. the reason it does not work in half the people is because those individuals have different genomic variants that make it so
they do not metabolize the drug well. we are learning about which genomic differences by a role in whether you are a good responder or a dad responded to an medication. or that you does it at a different level. the fda requires labeling on over 100 medications were they say genomic information might be relevant for prescribing this. to grow withgoing time. it is a standard of care for getain medication to genomic information before deciding whether to give them that medication or what dosing to use. host: gordon, wyoming. caller: good morning. thank you for c-span and thank you for your service to humanity, doctor. i hope nih is getting funding
from private sources and government. i hope that would be the case. maybe you could talk about that. tom mentioned behavior. i have heard that strenuous exercise can actually produce interferon, and antiviral and anti-carcinogen naturally produced through exercise. me take those questions separately. do private companies give money to the nih? that goes on.of we also have the foundation for nih, a private foundation that raises funds. there are many collaborative projects done with nih researchers and the foundation. i will also tell you, dr. collins talked about this, and works with-- nih many private sector entities.
both in the country and around the world. the ecosystem of biomedical research is one where nih plays a major role. almost the center of the universe for research. we do this in close partnership with the private sector and with our own foundation. as well as other funding agencies. the question about exercise and how exercise has been shown to result in the production of chemicals that are important for fighting infection, absolutely. doctor and your other health-care professionals are always say how important exercise is for keeping your weight where it should be. people who exercise tend to be healthier for lots of reasons. some of which we understand and many of which we do not. boston, new hampshire. charles for dr. eric green from nih in bethesda.
caller: hello. .hank you for your research we appreciate you and everything your staff are doing. my questions are the following. where can the general public go and have a dna test? how much is the test? what are the ethics? i will wait for your answer off- line. guest: those are some terrific questions. to recognize is we have the capability of reading out the complete genome of an individual in a day or two. ende wnant end to sequencing, it would cost several thousands of dollars. the question is should we be doing that and in which cases. so much of what my institute does and what my staff thinks
about and develops and researchers is trying to create youruture to answer questions more precisely. just because we can do something, we are not ready to do it on a large scale. there are circumstances where this makes sense. you will hear next from the head of the cancer institute. there is excitement around using the ability to read out dna by reading out the dna of tumors and figuring out better ways to treat patients with cancer with genomic information. there are examples like red genetic diseases where this are genetic -- r diseases where this makes sense. an individual that we do not know what is wrong with them. it makes sense to read out their genome and figure out what is wrong with them by looking at dna. i -- looking at their
this -- these are situations were getting the genome situation makes sense. in 10 years, there will be more scenarios where this makes sense medically. the question of where people can get dna tested, there are companies that do direct to consumer demand -- direct to consumer genetic testing. you will find various companies that offer that. nicely last part went with your second question. there are a lot of ethical issues and maybe some legal and social issues around what the advantages and disadvantages are of having individuals going out and having their dna analyzed when you do not have a health- care professional there to interpret that. there are good arguments on both sides. some companies have generated a lot of interest in genomics and have helped to educate individuals about the importance
of dna and the genome as part of their medical care. at the same time, it is not entirely clear what information is useful to patients in the absence of being cared for by a physician or pharmacist or a nurse or another health care professional. these are things we're grappling with. our institute takes this very seriously. we study the ethical, legal, and social implications of genomic hand-in-hand with the supporting these studies. many issues need to be considered if we are going to use genomics is part of routine medical care in a sound and safe way. host: our last question is from mary ann would bridge -- in woodbridge, virginia. caller: good morning. thank you for your research. is your research leading to dna --ng able to predict
sometimes it will skip a .eneration or so it would be interesting to see if your research can or will eventually lead to being able to predict this. host: thank you. would like to sort of managed expectations here. right now we can read out people's genome sequence and make some predictions about certain diseases they might get. in some cases we could say with near certainty that they will get something. but in most cases it is a percentage. as current evidence would suggest, you have a greater risk of getting this or that. there are many other factors for many of these diseases that play
a role such as environment and other social components of your life. i think with time this will grow. but some of the most fruitful contributions of genomics will be in areas that are much more whether oriagnosing not an individual will be a good responder or bad responder to a medication. certain diseases for which we know that genetics lays a very major role. but i am cautious in predicting the future where we will read out somebody's genome sequence and be able to put down every disease they might get and when they will get it and with what certainty. it turned out to be very collocated. we will gain some insight. host: the director of the national human genome research institute, part of the nih. thank you for being with us. .uest: thank you so much host: in a moment we will turn our attention to advancements in
cancer research with dr. harold varmus. unemployment at seven percent, the lowest since november 2008. we will be talking about this and subsequent "washington journal" programs. when we come back, we continue our conversations with some of the leading researchers at nih. >> after war, things escalate so quickly. in a moment that seems so loving, he can turn and flip and be so out of control. this was one of those days. them seeing aith hidden handgun and saying what is the deal, and he said i just wanted to sell it. pressures.many she just held the gun. he went into the room and came out with a shotgun and really
tried to jam it at her. sheried to get her so that would pull the trigger and kill him. as i described in the book because she wanted to. >> it is only half the story. following the man of the u.s. army's second battalion 16th in history. sunday at 8:00 on q&a. fordom age eight, betty knew she wanted to do something with dance puget put on skits led to herand that studying at the school of dance in vermont. these are some of her notecards. this is her organizer during this time. she carried this with her to vermont, back to grand rapids, off to new york where she studied and worked for the
, and theneling agency back to grand rapids again. so you will find a host of things in it that you would find in just about any organizer. rushers on dance costumes. one of her sketches of a costume for one of the dance routines she wanted to put on. choreography notes that she made for different dance routines. there is a wealth of material in lovethat talks about her for dance and how deeply she was involved in it, especially in early years. >> our program on first lady betty ford on our website c- rstladies or saturday at 7:00 p.m. eastern. our series continues live on monday as we look at first lady rosalynn carter. "washington journal" continues.
host: just outside of washington, d.c., in bethesda, maryland is the national institutes of health, including 27 separate institutes and centers. they conduct research in various disciplines of biomedical science and neuroscience. dr. haroldlive his varmus, director of the national cancer institute inside the building we looked at a moment ago. dr. varmus, appreciate you being with us. in nearly 1970's, president nixon declared a war on cancer. how are we doing today? guest: first, richard nixon signed the national cancer act, but he did not call it a war on cancer. many others did. cancer is a deadly disease. it affects nearly over a third of our population. it is a major cause of death, the number two cause of death in the country. to say how we're doing is a question that requires many complex answers. because cancer is not a single disease. hundreds if not thousands of diseases that are characterized by, we now know through the
efforts we have made here, it is a disease tossed by changes in our chromosomes. it is a disease of the genome. that is what you have been hearing about from eric green. we're making progress overall. annually report to the nation about progress against cancer, measured by the best metric we have, the h-adjusted mortality rate. over the last decade, overall there has been a 1.5% decline in age-adjusted cancer mortality. however, we would like progress to be faster. for some cancers there has been much less progress than for others. able tocancers, we are cure or control the disease in a very effective and essentially pain-free way. but for other cancers, we have made much more limited progress. it is a mixed bag. but the one thing that is
particularly relevant for today's conversation is that we have such a greater understanding of this set of diseases than we did 20 or 30 or 40 years ago. there is tremendous hope for making yet faster progress if we are given the resources and have the personnel to carry the research out. host: looking at the numbers, nih and the annual budget is about $31 billion. just over $5 billion goes to the national cancer institute. >> it used to. it is under $5 billion now because of sequestration. host: that is my question, how is sequestration affecting the budget? guest: i call institutes, we took over a five -- over a 5% cut. we had a ticket of budgets that were essentially stable and corrected for inflation, but those are declining. like ever -- like every other
institute in the nih, we are operating with the same level of resources we had in 2000. what we have done at the national cancer institute is to try to modulate the effect of these reductions, both long-term and short-term with sequestration last year, by trimming across the board and preserving the number of new grants we can issue. this is not a policy that can be carried out forever. we had to protect our investigators last year. we do not close down the most important projects, obviously. we have to trim at the edges and keep people going. we recognize there are other sources of money from institutions, from philanthropy, from other societies, from industry, and we are not the sole funder. frankly, we can move a lot faster on many fronts if we had
more resources. the talent is out there. the questions are there. the background information tells us what we should be doing next year at all these things are in this very robust thatprise is something would yield awards, i am convinced. host: i want to go to a couple numbers from your institute. 65.8%, that is the percent of those who survived cancer five years and beyond. can you explain? guest: can i explain what? host: that is a very high number and encouraging news. guest: it is. those numbers have to be looked at fairly critically, but we think one of the great pieces of evidence that indicates that we are making progress, in addition to the best metric of all which is the age-adjusted death rate, but one other way of looking at this is i measuring a five-year
survival rate. it is clear that that is an imperfect measure. one reason is that if you diagnose a cancer earlier and do not produce any real effect on the cancer, you still may have an improved five-year survival because of diagnosing a disease which still runs its course at an earlier stage. so this number is subject to some criticism, but it is a measure and an important measure because it tells us that there are a lot more people in the country today, around 13 million , who are cancer survivors, who have had a cancer diagnosis and are now coping with life as individuals who have had an experience being treated for still and are, of course, after five years remaining at some risk of occurrences of cancer. this creates a lot of problems
pays attention to. what attitudes people take, what they do to prevent occurrence, predicting it earlier, preventing second cancers, and what individuals who have a cancer and have been treated for it and what they need to think about with respect to employment and insurance and other aspects of life. host: there are an estimated 1.6 million cases of cancer each year according to the nih look over this year in 2013, and about 580,000 deaths as a result of cancer. i want to get to some of the most common types of cancers. prostate and breast cancer, and estimated number of cases between 230,000 and 240,000 cases in 2013 are estimated death among prostate cancer patients, around 30,000. around 40,000 for breast cancer. why we have a high percent of cancer rates in these two areas,
at very low rate in terms of estimated deaths. just go -- guest: it is true that we are quite effective in giving long life to people who are diagnosed with breast and prostate cancer. in part, that is because we have protection tools. sometimes those reduction tools , whatus to see a change we call a lesion or area of abnormal growth which might not have caused the patient any difficulty even if they had not been treated. one difficulty dealing with the numbers when one counts the incidents as well as the mortality of her haps prostate cancers is there are many early or diagnoses of abnormalities that might not to cancers.sed one of the problems we face at the cancer institute, one we're
looking at with special programs at the moment is how we distinguish damage that is detected early but would never cause the patient any real difficulty if left untreated from those early abnormalities cancer.ld lead to there is a large fraction of dndividuals who are diagnosed as being a cancer patient, and the numbers tell us to include a lot of people who would never ofe been ill or had a risk lethal cancer if the disease had been left untreated. how we distinguish between those who have something to worry about seriously and those that do not is one of the challenges that we are trying to address with new molecular tools we use in the clinic. host: if you can compare that to one of the leading causes of cancer deaths local lung cancer.
this year an estimated 228,000 cases and more than half, 160,000, estimated deaths as a result of lung cancer. guest: there are differences and also differences in the mode of detection. you are aware that there is a new method for detecting lung cancer earlier than before. at the national cancer institute, over about seven years, we carried out a large study called the national lung screening trial in which 53,000 methodused a new imaging . that method has now been shown by rigorous controlled study. out by the nci to reduce lung cancer totality in heavy smokers, people at high risk of the disease between ages 55 and 75 by about 20%. that is a significant number.
it does not compare favorably with the health benefits of not smoking. nevertheless it is going to lead and has led in the past to early diagnosis, and i think some of those early diagnoses will be abnormalities that might not have lead to lethal cancers. but the study shows that this method can detect some lethal cancers early and reduce the fertility from lung cancer -- the mortality from one cancer. likely once the official report is filed that there will be recommendations for all insurers, including medicare, to cover this method. hopefully we will see additional reductions in lung cancer mortality to add on to what has been achieved already by the
dramatic reduction in tobacco use in this country, as well as improvements in therapy, surgery , and drug therapy. host: if you are joining us on c-span radio, our guest is dr. harold varmus, director of the national cancer institute. he has his masters from harvard and also studied at the columbia university college of physicians and surgeons. allen is joining us from new jersey. caller: it is a pleasure to speak with you. doctor, you have talked about st and prostate. the question i have relates to bladder cancer and the progress that comes and whether or not a treatment that is known as the , if that is the state of the art and if it seems to be very, very promising with
regard to eradication of bladder cancer? has proven to be an effective therapy for early- stage superficial bladder cancer. for more advanced stages, other treatments are needed. this may be a place to introduce a concept that i think we need to introduce some time in this half-hour, and that is the dramatic effect of our understanding of the human genome is having on our approach to the treatment of cancer. bladder cancer is among those that have been subjected to intense genetic domination over the last several years thanks to the development of the new tools that you may have heard about in the previous half hour with eric green. and we will have to be subdividing bladder cancer according to the damage that one can see in the chromosomes of individual cases of bladder therapyo choose
appropriately. there are presently chemotherapies used in the treatment of bladder cancer once surgery is no longer an effective tool, but we have not yet optimize the treatment of bladder cancer. unfortunately many people with advanced stages of the disease do die of bladder cancer. we believe that, as our understanding thing of the aggregates of genetic changes are better understood in individual cancers, bladder cancer being a good example, we will have much better tools of treating the disease and trying to keep it at bay. host: is melanoma a preventable type of cancer? esco melanoma can be at least partially prevented. the main tool is reduced exposure to the uv damage and sunlight. we know from molecular studies is found in melanoma is a disease that varies dramatically among ethnic groups
.n this country is much more frequent in the white population than in the african-american population. strategyain preventive is avoidance of uv exposure to sunlight. that being said, we have had advances in the treatment of advanced melanoma over the past few years. melanoma generally appears initially on the skin and and can be successfully treated with surgery in the majority of cases. but when the disease is advanced, it becomes a very difficult disease to treat. over the last several years, there have been new therapies based either on specific mutations that are quite commonly encountered in that disease or, and this is an important development that has brought significant smoker through the use of what we call immunotherapies, modulation of
the immune system so the immune system helps in troll the growth and even reverse the growth and size of melanoma tumors. these are major developments that illustrate the power of our new understanding of the immune system and the molecular changes that occur in our genome to try to control the disease. host: what is your background? your personal background, your experience over the years? guest: well, you want a brief bio? postcode yes. guest: i grew up on the south shore of long island. i was trained in english literature at harvard. then went to medical school. twoceived an important years of training at the national institutes of health where i currently am. during that time, i learned to love basic research and understand the power of fundamental unfettered research to make deep discoveries that
principles of biology. then i spent 20 years around the faculty of the university of california medical school in san francisco. nih director for about six and a half years during the 19 90's. ran a cancer center for a decade. now i have been here for three and a half years as the director of the national cancer institute . from stephen rynning is massachusetts with dr. harold varmus. caller: good morning. i have been recently diagnosed with a fast-moving skin cancer. it is not a melanoma. i believe it is a carcinoma, if that sounds right. it was removed and there was a biopsy. now i will go back in to remove a little bit more of the tissue around it. is there anything in my
biological, my genetic makeup? i would like to know that. i am really careful in the sun. so i am in the coasta the sun a lot, but i am careful and put sunscreen on. so i want to know about my genetic makeup. i do not want this to be a reoccurring thing. they doubted they could cut it out in one big shot, maybe they could keep me clean for some time. guest: first of all, let me say that i am sympathetic with your diagnosis. i am sorry you are having to go through this. but i am glad you are under medical care. sounds like you're getting good care. i cannot be directly to your situation. i would not do that on the air in any case and i do not know all the facts of your case. i will say that with respect to your exposure to the sun, you should not feel that you are responsible for your cancer.
if everybody were to protect themselves from sunlight, the incidents of melanoma and other skin cancers would probably go down. but-- it would go down, there are natural error-prone u fence that occur during the growth of our cells that make it very unlikely we will ever be able to get rid of cancer as the disease that affects many different organs. smoke ore did not exercise vigorously, avoided alcohol, avoided obesity, avoided somewhat. still, cancer is going to be with us. in a sense, it is a product of the way in which our cells work. making mistakes when cells divide an inch in sick variation of our system. in that sense, cancer is a very deep disease that affects the
fundamental properties of how cells are engineered. but there are effective ways to .ontrol the disease like yours you're in headed -- inherited case is notthis common. but there are individuals who may be at high risk because they carry an abnormality in their genes inherited from a parent that predisposes them to certain kinds of cancers. most genetic changes that drive cancers are changes that occurred during one's lifetime. they made it a result of the errors that go on when our dna is copied in our cell divide or it may be the result of exposure causing substances
radiation thatv causes genetic changes. it is a mixture of events that lead to cancers, some inherited, more occurring during life, and i think as long as you are in the hands of a competent physician who understands some of these rents a polls -- some of these principles and has experience in the treatment of the kind of cancer you are dealing with the, i think you will be in good shape. host: a tweet -- over -- are we over diagnosing cancers like prostate and breast cancers? guest: in a word, yes. the difficult part is knowing which cases are being overdiagnosed. the numbers indicate, especially in the case of prostate cancer, which is no longer recommended by the task force for routine screening, perhaps
in exceptional cases, has led to many diagnoses that lead to simply notthat are helpful and not lifesaving but damaging, resulting in loss of sexual potency, loss of bladder continents, and the deficits of treatment are currently outweighing the benefits. so that test is no longer recommended. the numbers are pretty clear that the overdiagnosed of early breast cancer happens in many cases as well, and there are a number of things that are being thertaken to try to improve situation clinically. from the point of view the national cancer institute, the thing we are trying to solve is the question of how we can take these early abnormalities and tests to kinds of distinguish between those that
are likely to evolve into life- threatening illnesses and those beniare simply the nine -- gn abnormalities that would not cause serious symptoms or life- threatening situations had they not been detected. we're talking with leading researchers about their areas of expertise at the nih. dr. harold varmus is the director of the national cancer institutes. al is joining us from cambridge, ohio. caller: good morning. it is a pleasure to be able to talk to a doctor out here after working for 40 years at a good job but cannot seem to ever get to talk to a doctor. you have to make an appointment and describe your problem to a nurse and then get worked on by the doctor and no discussion at all. this is not ase substitute to going to your
physician and being personally treated. heller cho i understand. if you things. you put so many things out on the table, it is hard to get it republican duncan who called for a nuclear strike against iran here two days ago. truey, moving on, isn't it that cancer has only been out there that we know of for the 300 years? and don't we need the sun to make vitamin d for our bodies? guest: first of all, cancer has been around for a very long time . a book was published not long ago called "the cancer and the author, george johnson, talks about the evidence that dinosaurs had cancer. but cancer is found in many kinds of animals. it is found in the remains of
egyptians varied -- buried several thousand years ago. it is a phenomenon of life, specially human life. there is a variety of factors that can increase the risk of any single individual developing cancer. by far the greatest in our society is use of tobacco. but obesity, lack of exercise, alcohol use, exposure to sunlight are among some of the causes. is not as -- asbestos longer use but is another cause. yes marco we need vitamin d. it there are other ways to get vitamin d. modest exposure to sunlight is very different than the kinds of anosures that lead to ordinance numbers of mutations as a result of uv exposures.
most people get plenty of vitamin d. deficiencies in vitamin d can't .e repaired i taking it orally host: how important is it to listen to your body? early detection and early wariness in terms of riveting or allowing you to live with cancer and it being treated, regardless of the type of cancer? cannotunfortunately, we answer the question. the tools for detecting cancers before symptoms arrive vary dramatically from one cancer to another. and if you are among listeners of something we have not talked much about microsurgery -- about, surgery, that is very important to keep in mind. the point of early diagnosis is to identify life-threatening cancers before their life- threatening and then remove them
in their entirety. that is still the best approach we have to cure the cancer. oft and intense radiotherapy localized tumors. for some cancers we do have tests that have been shown to save lives. that is particularly true of something we have not mentioned , which islonoscopies an alternative to frequent detecting of feces for blood. but these are both methods that are proven to save lives by detecting colorectal cancers at an early stage when they can be cured by surgery. you want to have the prescribed testing, either for blood and so that by colonoscopy a tumor can be detected, even
before becomes cancers or at an early stage of cancerous development. we know from the rapidly declining mortality rate of: cancer that this is a very effective way to approach that disease. host: dr. harold varmus is the director of the national cancer nih.tute, part of the thank you very much for sharing your expertise with our c-span audience. guest: my pleasure. host: we are going to continue for a few minutes just with your phone calls and we want to hear from you on the issue of cancer or medical research at nih. in a few minutes, we will turn our attention to mental health issues. judy is joining us from gerard, pennsylvania. caller: good morning. i wanted to know if the people are aware of the john kansas cancer research foundation in pennsylvania.
it deals with using radiofrequency waves to do strike cancer cells that are targeted by nanoparticles. curley at the m.d. anderson cancer institute is the lead researcher on the project. host: what are some of the conclusions or findings so far? caller: they are at the stage of going to large animal treatment now. they have 100% success in treating pancreatic and liver cancer. host: thank you. manned -- mary from florida, good morning. caller: hello? ahead with your comments. we can hear you. caller: my son had a rare , and at age 10 in his first brain tumor took place. he had excellent care at children's hospital in boston. but the disease progressed until
he was in his 20's and a researcher at the national cancer institute found out about his illness. so we were all tested at nih to look for a family component. the disease produces tumors. we all have two tumor suppressor genes and both were in activated. through the efforts of research that the national cancer institute did, they located the very place where the tumor lost its genes, chromosome number three. my son received treatment there for many years with surgeries and radiations and at the final , the cancerillness within experimental drug which
prolonged his life three more years. unfortunately he did die at age 42 a largem 10 to part of his life was wonderful his brain was intact and his intellect was fine. we had a wonderful man and mainly because of the help of the nih. i cannot say enough of them. host: thank you for your call and for sharing your story with the spirit we are rejoined by another expert at nih. dr. thomas insel is the director of national institute of mental health. thank you for being with us here on c-span. why such a disparity between the treatment of medical illnesses and mental health issues? time it has long been difficult for many people to understand that mental illnesses are brain disorders.
very much like any other brain disorder or disorders of any other part of the body. the history of this goes back centuries. it has been difficult for many people to really understand that when a disorder affects the psyche, it affects the way we feel about who we are in the way we think it behaved, but it is actually based on something that is happening in the brain. it is a physical process that is driving this. we tend not to understand it that way. it has taken really about a decade or two of really getting the kind of science we needed to make that case and to understand the brain as being the basis of both normal and abnormal behavior. host: the president talking about the brain initiative, calling this the next major american project -- what is he talking about? guest: to put that into context, he was thinking about the last two great american projects in
science. one was the apollo project to put a man on the moon. and then the human genome project. the next great american project is what he is calling the brain initiative. and that is an initiative that will involve several government agencies, among them nih and the defense advanced research project agency and the national science foundation as well as private partners to take our understanding of the brain and how it works and bring it up a notch. try to figure out a way to develop the tools to decode the language of the brain. we have gone a long way recently, but we knew -- need to go much further much faster to understand the basis of how the brain works and how it sometimes does not work so well so that you end up with a brain that gives you alzheimer's or parkinson's or any of those disorders that were mentioned earlier. those are disorders that if you are going to really be able to
make the kind of progress we want, we have got to understand the fundamentals of the organ involved. we do not understand the brain as well as we understand the heart, kidney, or the liver. the association hopes to put the brain into the focus of current research so we can really up the understanding of this organ and be able to make a difference for people with brain disorders. host: with regard to alter them are specifically, is that because people are living longer and more prone to alzheimer's and dementia later in life or are there other factors? guest: a good part of the concern about alzheimer's is the change in demographics. it is becoming a more common problem. something that more than 5 million americans have been affected, and $200 million less going into this. we are concerned about how to do better. doing better here is not that
different from what you heard from my colleagues. a lot of it is trying to figure out how to detect earlier. here is one of the real challenges as we think about tose disorders, from autism alzheimer's and anything in between, we have been diagnosing them based on behavioral change, based on symptoms, changes in the way people think and behave. one of the great insights of the last decade or so in these brain s to realize behaviors are the last thing to happen with brain disorders. the brain preserves function for a long time. you do not develop the first signs of parkinson's disease until you have lost about 80% of your dopamine cells. with alzheimer's, we know the brain has been effective for at least a decade, maybe two. where we need to go is figure out a way to intervene much earlier in all of the disorders
before the symptoms look of the behavioral symptoms emerge. approximately 1.5 billion dollars is the overall budget for the nih." stood $31 billion. what impact has sequestration had on your research? guest: i think we are down to .bout $1.4 billion it means that we are not able to fund a number of new grants. we would like to. we always stay around 500 new grants per year. grants per year. we fell to 512 this year. 560e quite frank, i think is way below where we need to be. if you look at the cost of these disorders for the nation, and some of that is the emotional cost to families, but even just
the economic origins that these disorders in tail, you have to ask the question -- what should we be spending in r&d? it certainly should be much more than $1.4 billion. host: david joining us from eugene, oregon. caller: i know when the dsm 5 came out, you had a concern about the validity of dsm diagnoses. i wonder what you think about that. guest: i have thought about it quite a bit. we have been trying to figure out how to do better on the diagnostic side of mental illness. it is clear that as long as we base our diagnoses on behavior, as i just said, we are getting there late. the question is how to bring biology and a number of other kinds of measures to the table so that we can identify these disorders much earlier and began to intervene much earlier with much better outcomes.
if you listened to my colleagues who have been on the show this morning, it is really interesting how, across-the- board, whether talking about infectious diseases, cancer, we do not talk about heart disease but it is even more true there -- the lesson we learned in medicine is the earlier we can intervene, the better the outcomes. when you diagnose as dsm does simply by presenting symptoms, you are always getting there late. host: our guest is a graduate from boston university. walk us through your background. guest: it has been varied. i started off as an english major in college and went on to medical school. i have been trained in psychiatry. i did clinical research in psychiatry on obsessive- compulsive disorder here at the nih. that is really where i fell in love with science, being in an environment like this where i could explore whatever i could become passionate about.
it was a fantastic opportunity. it actually got me out of clinical research and ultimately into doing more basic neuroscience . i spent 20 years looking at the doing thats -- research. and i came back to the nih. host: we have a call from missouri. good morning. caller: thank you for c-span. i finished two books by caroline leaf. i do not know whether she is a psychologist or psychiatrist. but her books are on thoughts and what enters the brain. i just find it really hard to stay with this problem because i have got a lot of problems with hate. and all of the information i see on television seems to be trytive information, and i to eliminate all of that.
but it is almost impossible. all the wars. i mean, i am so happy that you have this program on this morning. i am going to hang up and listen to the program. thank you very much. host: thank you for the call. guest: by the way, i would like to make one remark. i am so delighted to have you here at nih. but i would not want your viewers to think that the nih leadership is all male and all pale and maybe even a little bit frail. we have a very diverse group of people here at the various institutes of nih. i want to make sure you come back in the future and have a chance to talk to some of the others as well. host: we are happy to do so and appreciate your hospitality this morning and the staff and the chance to tap into your expertise. we would be delighted to come back again. we have another 15 minutes. do not leave us. jeff is joining us from new york.
caller: i have a question about schizophrenia and that maybe schizophrenia might be compared to telepathy, and i would be interested in the symptoms of schizophrenia. thank you. what is your story? why do you bring this up? caller because the mentioned thoughts and people with kids over in your hear voices -- people with schizophrenia hear voices. people with schizophrenia might naturally have that ability to hear voices. host: thanks for the call. guest: schizophrenia is one of the topics we are most focused on at the nih, what we call a serious mental illness. it is complicated and is probably many disorders that
share key features. one of them involves hearing voices. we call those the sort of positive symptoms or the ones we know the most about when we think about this illness. people who have delusions and hallucinations. but there are other features as well. some of those have to do with a lack of motivation and a lack of ability to move forward in life. there is a third group of symptoms which we call the the cognitiveoms, deficits. those are problems with memory and problems of attention. sadly, we do not have good treatments for those latter two categories. we have treatments for hallucinations and delusions, medications at work quite well. but the other parts of this syndrome, the parts that are often even more disabling, we need to come up with much better treatments. that is part of why nih is so focused on developing both
better diagnostics and better therapeutics for these kinds of illnesses. host: this tweet on the issue of mental health -- are there any other significant development being made in other countries? guest: it is a great question. recently, mental disorder research has become global. there is a lot of interest in global mental health, and that is not just from europe and australia. canada and increasingly in other parts of the world. the disorders we're talking about our global and not unique to the developed world. as a result, there have been some very interesting little-resource environments to try to figure out how to do better. so when we think about global mental health, we actually think about what is being done in places like rwanda or places in quitewhere resources are low. yet sometimes the outcomes are quite good.
we have been using global mental health and not only to think about how we can be helpful to those with fewer resources but how we can learn from them, to figure out how we can do better in the united states. host: george from jacksonville, florida. florida but myin sister has a medical facility in new jersey. equipment used mostly for cardiac diagnosis. but she has recently begun using it also for brain scans. she has been able to detect early on the proteins lack buildup in the brain way before there are any noticeable symptoms in the patients. can you tell me more about this? great question. if these are brain disorders, we need to look at the organ of interest. that includes brain imaging like pet scans.
increasingly we have been able to detect changes, for instance in people with early alzheimer's disease where you can see the changes in the brain well before you see cognitive decline. in other disorders it has not been quite so straightforward. so we are quite interested in being able to do the same thing for teenagers who may be at risk for psychosis. most of the mental disorders begin early in life before age 25. what we would really like to do is be able to identify brain changes much earlier than 25 when someone comes in with a psychotic illness. the hope is that we would use similar techniques as what we are using an alzheimer's. but this is still in the realm of research, not quite ready for prime time. host: would any of the cognitive or mental issues -- can you put in terms of statistics with the chances are if that does run in your family that you also can
suffer a similar situation? depends on they disorder itself. this is where genetics has become so helpful. we used to mostly make these kinds of estimates based on family history. now we understand that we can do far better if we actually look at the and heritability component in the genes. that confer genes quite a risk from alzheimer's or parkinson's, but those are in the minority of people who have those disorders. for the mental disorders like autism and schizophrenia and bipolar, there is a component that is inherited. we do not have all of the genes that tell us where that is coming from. 128ave now just recently genetic hits in schizophrenia. two years ago we had almost none. this is a very fast-moving field. but i have to say that we're
still looking at family history is one indication. in the case of schizophrenia, the recurrence rate, that is if someone else in your family has it, the risk for you goes from about 1% in the general ovulation to as much as 10%. in the case of autism, it has been higher. 2% up to as% to much as 15% or 20%. it is a substantial family risk. mental healthc is research at nih. our guest is dr. thomas insel. this is a tweet from a viewer -- i love it when c-span's "washington journal" has accomplished nonpolitical guests who are great at explaining their expertise and at talking to guests. guest: thank you. host: allen from virginia, good morning. i am very glad you're on tv this morning. i am a disabled veteran with
traumatic brain energy -- injury and loss of cognitive function. one point is unequal treatment under the law. when i lost my disability insurance, we're limited to like two years whereas some of them as cancer or parkinson's or something like that, he goes on for the rest of their life. we are caught up -- cut off automatically at two years. i have a good psychiatrist. i have an neuropsychiatrist. i have a urologist. all of these guys. seen that these people work together as an integrated team even though they are working on the same bodily organ, our brain, the most complex organ in our body. guest: thanks for calling. those are both critical points. i wish we had the whole 30 minutes to cover both of them. then the focus on the latter
point about the integration of care. you're absolutely right. i mean, one of the problems we have here is that we have disciplined smoke all of which are looking at problems from the at thisan that come with very different training, different language, different treatment approaches. imagine for a moment if we had two fields of medicine on the heart, one that studied arrhythmias and one that studied heart attacks, you would say that those are all the problems of cardiologists. yet, we have psychiatry and narrower june, almost as if you have two disciplines separated by a common organ -- you have psychiatry and narrower june. for people like yourself who are struggling with tbi and problems that have to do it conflicts changes in the brain, we need to bring all that together into a team they can really work well and bring the best tools we have
appeared one of the best points we can make is that we do not actually have the treatments we need yet. one of the issues about two days rogue ram on the sequester -- on today's program on the sequester, we have to invest more and more and understand the basics so that we have bettered agnostic tests and better treatments. a long time ago, one of the great advocates of research on that ifade the comment you think research is expensive, tried disease. she recognized that this kind of work is an investment against the cost of disease. part of our concern when we face the sequestration is that we know there is a long cost and not investing now, the people , people with tbi
complicated brain disorders that we do not understand well enough, you will not have the treatments in the future and your children will have the treatments in the future that we need to develop right now. david from phoenix, arizona. caller: thank you for taking my call. insel,ou, dr. in cell -- for being here today. i was a guinea pig for a pharmaceutical company. one of the medications went wrong and left me with cognitive issues. as havingagnosed me aids-related dementia. diligently to get my communication skills back and not be so nervous in front of people. and i think i want to go back to
steve's initial question to you as to why there is not the is, youand why there know, problems in the community of not seeing this. to when peoplek would treat a mixed-race person that looks white but is half , and theyave hispanic would not treat them as different than white. host: thank you for the call. guest: there is a problem we struggle with, there is sort of system here. there has been a sense of disorders of the mind are not real disorders, that they are not actually brain disorders. to be fair, there is a lack of understanding about what we're dealing with. there is a failure for most of the public still to realize just
how disabling and often fatal these disorders are. you have to remember that there are 38,000 suicides in the united states every year. of the time related to mental illness. that is more than the number of him aside by a factor of two. it is more than the number of traffic for tele these. it is more than the deaths of almost all forms of cancer, except for three. it is a significant problem, yet you do not see much attention to this issue and not much understanding that this is a medical problem that must have a medical solution because it is a public health challenge. host: a final question in about 30 seconds. what are the big questions that you have moving forward? guest: for us, the challenges are going to be how to come up with the next generation of treatments and how to improve the way we do diagnostics.
you get diagnosis the on the level of observable symptoms. we began to really put some real details that these are circuit disorders. and how do we bring together our understanding of the brain, understanding the complexity of human behavior to be up to help people with these, located disorders in a way that is lasting and allows them to recover and function fully in this world? [captioning performed by national captioning institute] [captions copyright national cable satellite corp. 2013] for: thank you very much being with us here on c-span. thank you to dr. collins and the entire staff and management at nih for allowing us to check in with the research that they are doing and the impact of sequestration and some of the innovation ahead for nih. you can get all the information online anytime at nih.gov. thank you for being