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tv   Key Capitol Hill Hearings  CSPAN  December 24, 2014 2:00pm-4:01pm EST

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averted. tobacco public health problem extract e expected to 500 million premature deaths the challenges of hepatitis and excessive exposure. that is during childhood. these are all opportunities where we can then bend the arc and in the screening, the chances for hearing is much better especially solid tumors. we have proof that is the case. if we can enhance our ability to detect these cancers earlier stand on a path to doing it thanks to the nih, that will be one of the lowest of the low hanging fruit to really reduce cancer mortality. lastly on the treatment for it targeted therapy going after the genes that are at variance and a cancer cell. what is exciting now as this new dimension of immunotherapy which does not really speak to what is going on inside of the cell but
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instead, harnesses the power of the immune system in the hopes, reawakens it so it recognizes that cancer and can attack the cancer. those therapies are giving responses in a large fraction of patients with advanced disease. and so, if we begin to combine the targeted therapies going after the genes, harnesses the power of the immune system, i think what you will see over the next 5-10 years are significant reductions in cancer mortality. we are seeing cap for melanoma. and a variety of other cancers across the board. >> it sounds extremely complex to do targeted therapy based on specific genetic mutations. i wonder if doctors, it is one thing to be at a great institution, what if you are at some other place?
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are doctors able to keep up and provide the kind of care that is made such a difference? >> other great institutions, george washington here in this area and so on and so forth, the issue is really the knowledge gap that you are referring to. it is a significant one. there was a report on the unevenness of cancer care throughout the united states. on average, for example, the mutation in lung cancer, when there was a new therapy it took on average in a community setting for to be routinely used in the public domain. that is a critical issue and is widening the cause of this staggering complexity where
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physicians do not have the chance to keep up with m.d. anderson and we produce 10 papers a day. what i find at m.d. anderson on the oncology expert advice and be able to ingest data clinically in a community setting, not just in the walls of m.d. anderson. and how that system being taught by the world experts. what would they do essentially a second opinion? that would then give advice to the treating physician that is what the world experts would do and it would be the clinical trials you should consider and so on. and this will reduce -- once they get implemented. being in this age of information
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and is in fact is going to be on a practical level as most impactful and reducing the burden of cancer in our country. >> do you worry about this, dr. collins? if so, what can you do? >> we do not have a good track record of taking research and finding how they integrate into the standard of care across the country. a few years ago, somebody looked at that timetable and concluded 20 years and that is unacceptable. there aren't good news aspects of the way things are going. ron talked about some related to the cancer field. the best art of the story is the patient's are no longer comfortable sitting back and waiting for someone else to make decisions about their care. we are in the era of the empowered patient and the internet has made that possible even for individuals who have no medical background to find information and ask pointed
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questions about how come you are doing this when you could be doing that. that alone motivates physicians to get up to speed. no physician wants to be embarrassed by their lack of understanding a patient brought to their attention. we are seeing improvement. the electronic health record, an opportunity there and provide an opportunity for more patients to have access to clinical trials. in childhood cancer, it is the case for most kids with cancers. but with adults, it is a missed opportunity both for the research community and especially for patients who would benefit by enrolling and maybe giving them access to something that could've been much work targeted for their needs. we have to work hard on this. the other point is reimbursement. if we are going to see these types of events is finding their way into the standard of care,
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it has to be clear who his hand and as a challenge with many of the new developments being sufficiently new and have not gone through the discussions. some of the new drugs are expensive. >> there was a piece on "60 minutes" about the high cost of cancer drugs. it made a scene it was random how much a cancer drug cost, is it? what determines the cost? >> the fundamental question and that is an important issue is to think about what drives the cost. at the end of the day, for us to incentivize innovation and address major needs especially in pediatric cancers or rare cancers, etc., we have to do a much better job in reducing the extraordinarily high rate of failure in cancer drug development and testing. for every 20 drugs that enter into clinical trials today, only
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one will succeed into the common fda approved. 95% failure rate and 56% of those failures incurred in phase 3 where the cost is very high and patience are sometimes benefiting but not achieve statistical significance. and vice versa. if you look at the root causes of why we fail, we are not doing enough that the plea -- preclinical stage due to the science needed to validate the target to develop the drug as the target, test and a very sophisticated model system. and develop a clear hypothesis to what patients you are going to be getting the drugs to in a clinical setting and know if the hypothesis is validated. if we get it that way and put more effort on the front end,
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you would reduce the high rate of failure and that would reduce the cost of the -- of developing the drugs. they are significant and their expense in part because we are paying for the high number of failures that occur in the clinical setting. someone has to pay, the taxpayer, the government, the investors, the patients with co-pays, etc. a key issue for us to focus on is, how is it that we can reduce the cost of developing drugs? and to the point precision medicine before, which patients would truly benefit from getting that drug? would have a durable response, low toxicity so that you have impact on their disease. i would like to see the dialogue be more balanced and thinking about the root causes of the issues as opposed to some of the dialogue that has been recently
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and in the public domain. >> i totally agree with what he is saying there. and more invested in an effort trying to identify ways and the preclinical space to be sure then you are chasing after a monotone that will succeed and not one that will crash and burn in phase three after your spent hundreds of millions of dollars on it. that means our preclinical models have to be increasingly reliable. we have cured cancer in mice more times than i can tell you and we will continue to cure cancer in mice if it is something we are sure is a good model but some of the times we have been misled by the animal models. it is what we have. it gave his answers but sometimes they were not answers we needed. increasingly, in that front end of the development pipeline, we need to develop a lot more, all the way down to the three-dimensional structure of that particular drug and how did
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it fit into its target and questions about toxicity, which we can do elaborate ways using biochips. we can do that. you can take a biopsy, add the appropriate number of genes, turn that into pluripotent cells, and coke that into becoming heart or muscle or beta cells for your pancreas or brain cells. you can bathe them in the substance you're thinking about using and find out if there are unexpected things you want to know about. basically fail early if you going to fail.
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the old way we do this is slow and expensive and involves small animals and large animals. we can do better. bottom line, unless we come up with ways of reducing the failure rate, drugs are going to cost a lot of money, because companies have to remain solvent, and they have to pay for all these failures. the cost of success is much higher than you would want it to be. >> you describe bankruptcy as a common side effect of cancer, which is very distressing for everyone. if the goal is curing all kinds of cancers, what's the biggest hurdle? what could make the biggest difference now in trying to progress along this path? take this one. >> i can start. i don't know if he can say this, but one of the greatest proven
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success stories in the history of the nation has been our research that has converted knowledge, basic insight into things that matter for patients and what is very exciting for us. we have a clear line of sight on making an impact on cancer worldwide through prevention, screening, and therapeutic advances that are game changing, and patients are dying. families are being impacted. this nation needs to make a decisive assault on the cancer problem and other diseases for which we have a strong conceptual foundation at this
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point. we need to act. we need to act decisively. as the u.s. goes, so goes the world. we need to invest in our research activities so we can make a difference in the cancer problem. >> is it fundamentally a matter of money? is that the number one thing? thein sein we are not limited by ideas. we are not limited by talents. i think we are limited by resources. if you look at the opportunity scientifically in the field of cancer and many other disorders as well, i could say the same thing about alzheimer's or diabetes. we are at this remarkable moment scientifically. it's exhilarating to see how this landscape changes almost daily. that's one of my great privileges to look across the landscape and see what is happening almost every day. i'm sure you are reading my
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blog. >> are you tweeting it? >> i am tweeting it. it is amazing to see the insides. they are coming out of all sorts of technologies we didn't have before. the things they are doing are getting better. the revolution giving us insight into how things work and how things go wrong. the efforts to understand the details and the advent of electronic health records. all of these things are coming together in a way i would not have imagined in my lifetime, yet we are not nurturing that engine of discovery the way we could be. a statistic i think is particularly troubling, often discouraging to young scientists thinking of getting in the field is the following. what is your chance, if you have a great idea about cancer
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research and it is preclinical, but you have an idea about where you're going to get funded. what is the chance the grant is going to get funded? it's about one in six. traditionally it has been one in three. in the cancer institute it is one in 10. it's even lower. you might say we were funding too much stuff before, and we weren't putting a tight enough filter on this. the filter is rigorous peer review by experts in the field. we actually went back and looked. this was in heart disease research, but i imagine it's true across the board. i can 2001 we were funding a third of the grants -- back in 2000 when we were funding a third of the grants. does a grant in the 10th percentile turnout more productive than a grant funded in the 25th percentile?
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it is peer-reviewed, so is it better than the other? there is not a difference anyone can tell between the 10th percentile and the 25th percentile. they are both great. that shows we are living have to grade science on the table right now. just at this moment of great opportunity. that's the thing that wakes me up at night. that's the thing that causes a lot of the biomedical research community to really hunker down. many individuals deciding after a couple failures to go on to do something else or go on to another country where the support happens to be better. we alone of the developed countries are the ones cutting back on biomedical research. look at what happens in europe or china or singapore or south korea. brazil.
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they are going the other way. trying to be what we once were. is that america's vision? is that where we want to go? >> it must be agonizing to make decisions on funding some of these grants. >> we may have just turned on the next nobel prize without realizing it could have happened. we may have convinced a young investigator who is trying for the third time in not quite making the cut it is time to go to law school. not that there is anything wrong with going to law school, but i think we need science. >> talk about collaboration among researchers. is that something that changed? you mentioned the lung cancer effort. >> there is no question there is collaboration. for centuries academia celebrated the individual, but
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now we see multidisciplinary activities being brought on very large-scale projects, so you really need to bring together a collection of disciplines, use technologies to really be able to prosecute these ideas, these complex clinical trials, so we are seeing that because folks recognize in order to achieve the goal they want to have in their careers, which is to make an impact on the cancer problem, that they have to do that in collaboration with other team members. science continues and should support individual investigators, that lone wolf that will make some seminal discovery that will change the world. an example of that is jim allison, who in the 1990's, was trying to figure out why the immune system was asleep at the wheel in cancer.
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it was his discovery of a molecule and the drug that led to a whole new class of therapeutics. that was individual investigator activity, that has brought in a multidisciplinary effort to bring up to full fruition. what do you think that would be funded now if he came forward with that idea? >> even now it would be a challenging time. he was a real maverick. when you're out there, there is no conceptual precedent. you have to have the judgment to realize this will be an opportunity. those grants will not fare well in district attorney in setting of limiting resources. >> you have been affected by the breakdown of the budget process
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in washington, by sequester, shut down. what makes this work better? does the whole government have to work better for things to work better for your agency? good luck with that. >> we have lost 23% of our purchasing power for medical research over the last 10 years. a big chunk of that happened in 2013 with the sequester, which took away 1.6 billion dollars. it would have gone to medical research. we have not recovered from that. if anyone thinks the sequester is over, remember there was a deal made thanks to the hard work of congressman ryan. it is just a two-year deal, and the sequester comes back unless action is taken, that's where we will be. they would then lose over the
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next 10 years $19 billion that would have gone to medical research. it follows the trajectory, which is basically the default of what happens next. i am an optimist. i think winston churchill was right when he said you can always count on the americans to do the right thing after they have exhausted all the other options. the case here is so compelling. it's not just that this is the engine that has led us to advances in longevity. it has also been probably the best driver of economic growth since world war ii, and everyone's interested in seeing the autonomy grow. the genome project, which i am privileged to be leading. they did an analysis of the money spent on the genome
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project over the 13 years, and they came up with close to a trillion dollar answer. basically 178:1 went into it. the women's health initiative. 141:1 is the return in investment from that important project looking into what works and what doesn't work. we are starting down the path to look at the brain initiative, and i'm sure there is going to be all kinds of technology that is going to create new businesses and economic growth, but we are struggling to get this off the ground at the level it should be, so there are all these arguments. when i have a chance to speak to members of congress and the administration, everybody says, you are right. this is something we should be doing, but we are caught in this current gridlock. this inability to come to a long-range plan about how resources are going to be spent.
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we continue to be as part of the discretionary budget victims of that long, drawnout process that has not reached a conclusion. i am just enough of an optimist to think ultimately the case will be so compelling as to be irresistible and we will turn the corner. if we do turn the corner, it was great from 98 until 2003, but it sowed the seeds of what happened next. namely, we don't have to worry about you. what we need is stable, predictable trajectories. then you can plan. then young scientists can say it's a career for me, and it's not going to get pulled away by one of these terrible downpours. we are not going to have a roller coaster. we are going to have a
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predictable pattern. there are people in congress advocating for that. there is a bill pushing that. why should that be part of it? it's something everybody has a stake in. everybody who has a family member or friend with medical illnesses looking for answers. >> i am going to ask one more question and then turn to the audience, so you might ask the question that occurred to you. before you do that, you mentioned prevention that could prevent 50% of cancer deaths. we know about cigarettes. you get the sense that every week someone says something does or doesn't cause cancer. i googled news stories what causes cancer. i found out wearing a bra does not cause cancer.
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local mom wonders about artificial turf's cancer risk. that's a new thing to worry about. we see stories about the link between obesity and cancer. is this the whole household, or the people feel whiplash? >> there is evidence that rests on a bed rock of knowledge that does make a profound impact on health and well-being. i think this goes back to some of the things we talked about earlier. going on a website to find out what you can do to prevent cancer is a very generic, broad-based recommendation. what i want to know is how often we should be screened for what. what are our risk factors? what can we do to modulate disease? what you are going to be seeing is personalized wellness, where you're going to be able to, based on family history,
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genetics, the kinds of food you eat, the environment you live in, you may have different levels of screening or different things you might eat in order to change the trajectory of diseases that might afflict you versus someone else. personalized wellness is going to be important, but for the big ones, smoking is public-health problem number one. second, we have obesity as a major problem in the united states and other countries. this is a big problem that really does impact certain cancers. we have viruses. i mentioned hpv as well as hepatitis, which are major causes of cancer deaths worldwide. what is interesting about all of those as many of those are operative during childhood.
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if we think about what we can do to change the trajectory about how we managed health and well-being in the united states and other countries, i think we have a mixed opportunity to teach children to influence them and give them the knowledge they need select the right time in their lives they develop the habits they need. 88% of adult smokers start as kids. hpv needs to be given during childhood to protect against infection later in life. 80% of the human population is hpv positive. it depends on which subset you get as to whether you are going to get disease. cancer prevention is a childcare issue. i think we have a responsibility to make sure our children are empowered with knowledge and protected in a way they should be protected so they will have a
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future that is lower incidence of cancer. >> you mentioned the power of thought as a positive thing. does every patient mentioned that? >> the patients are empowered by knowledge. there are a specific amount of patients that have that mentality, but physicians don't automatically recommend what they should be doing to prevent disease. a good example is we are front of mine with respect to tobacco cessation. what we found is if you get an listed in a tobacco cessation program, it is 37% success versus 5% for self quit. it's a great opportunity. physicians who are busy don't always remember. now we did that automatically.
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it's in the electronic health record, and as soon as it goes in, the patient automatically gets referred to the tobacco cessation clinic, and it increases fivefold the number of referrals. i think there are technologies we can exploit that can really impact the front end of the problem prevention and screening efforts. >> this is a smart group of people with intelligent questions to ask, so let me turn it over to you. we're going to hand over the microphone. identify yourself if you will. >> it seems the underlying argument is you do not have enough monetary resources. have you ever thought of working with other countries as a team
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as opposed to doing it alone? it seems to be the most intelligent way of dealing with the situation. >> that's a great question, and we should have addressed this already. there is an international cancer genome consortium that has many countries working together to build this amazing database of what do you see if you have hundreds of lung cancers and hundreds of ovarian cancers and hundreds of gastric cancers. every country has a different epidemiology of which cancers appear. all the countries agreed they will follow the same standards about the quality of data and data access so everyone can see the information. that was built upon the human genome process. a lot of people doing the work
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were not even in the u.s. they basically agreed this is so important we're going to work together. i am the chair of something called the heads of international research organizations, and around that table the ceos of the public funding agencies and some private philanthropy account for 95% of the dollars that go into public funding of biomedical research. we are constantly looking for ways we can be synergistic and not duplicate. sometimes we duplicate on purpose. we see, it worked in this setting. does it in this setting? you are right. the same could be said about the private sector. i have spent more time talking with the heads of big pharma than any of my predecessors trying to figure out ways we can knock down some barriers, and we
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have made some interesting models happen. likewise the foundation, trying to figure out ways philanthropy can fill in some of the gaps, although if you add all the philanthropic contributions, we still fall short of what they lost in the sequester. it's all relative. >> they have launched a global program. anderson has been on the global front for quite a few years. we have 30 sister institutions in 22 countries. this allows us to work not just with great institutions and those other countries to elevate quality of care and research, but also we work with governments in those countries as well as media so we can drive both alice policy and education of the population. it's important it's not simply resources that is important, but there are organizational opportunities that relate to these sorts of collaborations between the private sector and
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public and other countries and so on. it's a big problem. many nations that are now solving their communicable disease problems are being faced with an aging population, and they are concerned about this collision course they are going to be facing decades from now with alzheimer's, heart disease, cancer, and so on. this is a big problem worldwide. we have estimated by 2025 1.2 billion people over the age of 60. we have essentially doubled life expectancy. a big problem. >> another question. wait for the microphone. >> i was wondering -- >> go ahead. we will go to you next. >> i was wondering if they age of your parents when you were born would affect your chances
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of getting cancer, because i have read older parents, their children are more likely to be autistic. they are also more likely to have down syndrome, and i have also read if your mother was younger when you were born, you're more likely to live longer. i wonder if the age of a person's parents has any effect on your chances of having cancer. >> what a thoughtful question. we do know there are certain consequences that occur when parents are older than average, and you mentioned a couple of them. certainly as maternal age goes up, the risk of chromosome abnormalities, down syndrome but also others, increases. as fathers get older, there are more mutations in the dna. we can actually be very precise
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about that. if your father was average age 20's to early 30's, you probably have somewhere in the area of 50 to 60 new mutations. that seems to be true across multiple different groups, but if your father was 50 years old, you might have 100 or 110. why is that? that's because the process means cell division is happening all the way along, and the older the father is, the more the sperm has gone through copying opportunities and more chances for a mutation to appear. it's a modest effect, but it's clear if you are looking at the condition like autism where we know new dictations play a role, the risk goes up a bit. if you're looking for a rare new
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mutation genetic disease, you will find more often than average the father is a little older. when it comes to cancer susceptibility, theoretically i could imagine that might be the case. if you have one more mutation or two more mutations because your father is a little older and they happen to fall in a vulnerable place in the genome, but i don't know that is enough that you would ever see the actual impact, because it would be such a rare event to happen in that vulnerable spot. i'm not aware of evidence that cancer risk goes up. >> that's correct. the overwhelming factor for the development of cancer is our age. it works every other statistic aside from tobacco, for example, which dramatically increases your risk. just simple changing demographics, aging of the
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united states is the single most important factor for the development of cancer. by 2030 we anticipate just because of changing demographics and the aging of our nation, a 45% increase in the incidence of camera just because of age. >> you talked about how the odds of getting cancer increases with each decade increases. >> for alzheimer's, diabetes, heart disease, and cancer, every five years the incidences doubled. by the time you're 45 you have a 45% chance of having alzheimer's. by the time you are 80, you have a one and two chance if your mail and one in three chance of your fema. it is a question, can we afford not to support the solution?
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today we spend a quarter of a trillion dollars for 5.4 million americans inflicted with the disease. by 2050 we will be spending $1 trillion in today's dollars if we don't impact on the disease. we have to make a concerted effort to get out ahead of these problems in a way we know we can through decisive research, development of drugs, and so on that would make a difference. >> not to mention the human cost. she didn't have the mic. >> i am karen brooks. i want to thank you both for a lifetime of science. can you speak to the state of
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research and treatment for brain cancer and other such forms of cancer? >> we have made tremendous progress across many different fronts. among the most challenging, to diseases i spent time studying in my laboratory is the brain cancer that took senator kennedy's life and also pancreas cancer. there has been a tremendous amount of basic science work that has given us the atlas of genes in those cancers, really outstanding genetic model systems that help us understand what those genes do, but we are faced with converting noninformation into therapies that truly treat those diseases. i am cautiously optimistic of early data beginning to emerge in the immunotherapy space,
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which may give us a foothold upon which we can build quite rapidly. a good example, another disease we studied because it is a virulent diseases melanoma. in 2009 there were very few advances that had any impact on survival. with the advent of this new enemy in therapy, we have 23 percent of patients that appear to be cured. these are patients out 13 years. this is within six to nine months. 23% we have durable responses and now the addition of another immune modulating drug appears to be generating similar results in the majority of patients. maybe be 80%. we cannot say yet because it hasn't been around long enough.
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it could be in the next five years we may have 80%, 90% cure of those with advanced disease. the perspective is there was nothing for these individuals, no hope, and that's the example of science being converted into new life-saving drugs. i think with some of these other diseases, if we can get a crack on the armor, we can build with combinations, because we have this enormous technology to really figure out what is going on with these complex diseases. that's difficult. we have getting drugs in. there is a whole bunch. the same thing with pancreatic cancer, relating to drug penetration. we need a special effort in each of these areas.
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this is a great opportunity, but we need a stronger critical mass. >> i would say another word about the immunotherapy approach. this is so exciting. it has been built on efforts many thought was never going to pay off. science magazine calling cancer immunotherapy the breakthrough of the year, not just in medical research, in all science. cancer immunotherapy was the most exciting thing to happen in the view of the editors. one already talked about the way people like allison figured out a way to unleash the system. you find out how do you bring it back to life, that there is another, even more sophisticated approach where you not only activate the immune system in a general way, but you train those
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t cells to go after a target you identified in the tumor, and you basically give those cells instructions. you educate them about what their target should be. it's the chimeric antigen strategy developed by a number of groups. there is a paper describing dramatic results with the approach in leukemias and lymphomas, but it has been tried in brain cancer. there is a trial on going. i happen to be watching it closely, because a dear friend of mine is one of the participants. a woman who lives in michigan, and she comes back every couple months to see what happened. she is now two years out without any evidence of regrowth, which is pretty good. that's an anecdote, but it is a
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fascinating strategy. it's using the approach, which she refers to as her ninja warriors going after those cells that need to be wiped out. it's really tough. nobody stuck with brain tumors were pancreatic cancer would say this is anything but a tough problem. there are all kinds of problems. i would say we have a better set of ideas and strategies than we have ever had. we ought to put every bit of energy into making this real. >> you talked about some kinds of cancer that are essentially cured now. what is going to be the kind of cancer that is the last one to solve? would it be brain and pancreatic cancer? what do you think? but there are challenges with diseases that show
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heterogeneity. i would not pay one cancer. those cancers such as lung cancer, colon cancer, it is as if there is a hand grenade in the nucleus, and there is massive regeneration of the genome. this is why it is so exciting because it is designed to go after complexity. it has many billions of combinations that can deploy to identify heterogeneity, and the targeted therapy does not elicit those responses unless used in that combination. it is the category of disease or which there has been wholesale change in the genome. this is why if we can get the detection of cancer much earlier at a time in the history of an aspiring cancer to be able to
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intervene at a point where there are fewer cells, they have less levels of genetic alteration, i think the fight is one that could be won more readily. it's the combination, but brain cancer is a tough problem. pancreatic cancer is a tough problem, in part because we do not have a way to get adequate amount of drugs to the system. but i would not expect melanoma would be one of the early successes, so i am totally unable to predict what will be the last one. >> we are constantly humbled. >> we have about five more minutes. we have lots more questions. >> i am a head and neck cancer
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survivor, not caused by the hpv virus. i have a great interest in the vaccine. do you feel someday it will be mandatory? >> as part of our initiative, we have embarked on a number of cancers where we are trying to push policy education on a variety of different fronts, be it tobacco or vaccines. i think it is an enormous missed opportunity for us not to vaccinate all of our children during the window of opportunity. girls and boys. there is an epidemic amongst men. there is no pap smear like cervical cancer where we can identify these cancers early, and it extracts a very significant toll on these individuals.
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we have hopefully later this year and early next year the fda may approve a vaccine. this is a unique opportunity we have where we can inspire our legislative bodies across the country to enact appropriate guidelines so we can really protect our children. it is an incredibly safe, incredibly effective vaccine. this is what we have been dreaming for. a vaccine that can prevent cancer from happening in the first place. this is manna from heaven. we need to take advantage of this, because anybody who feels this vaccine should not be given, i would ask them to come with me and do one examination of a patient with advanced head
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and neck cancer, advanced cervical cancer, and you tell me what the appropriate case of action should have been for those individuals decades earlier. it is a childcare responsibility. we as adults have a solemn responsibility to protect the health and well-being of future generations. i have three children, ages 10, 12, and 13, all vaccinated. one boy and two girls. >> you saw what a political football that became in your state of texas. >> i think the approach governor perry took was one where he did the right thing but did not engage in the appropriate instruction needed so there would be grass-roots consensus. we will approach the legislature in texas and a variety of other states so we can educate our legislators of the opportunity.
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it's important to appreciate. this gets mixed up in sexual promiscuity. there is one time between ages nine and 13 where there is optimal immune responsiveness to the vaccine. that is the window of opportunity. it's not like you could wait later on and say, let's make a decision at a later time. 80% of the world's population is infected when they become adults. the vaccine does not work as effectively or at all later on. the time to give this life-saving vaccine that can prevent over 400,000 deaths worldwide is in those ages, and we must do it as a society. >> did you want to add anything? >> i totally agree. >> one last question. >> if you can address viruses to treat cancer.
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do you have hope in that area? >> i will just say a word. the way in which we have tried to approach cancer has many different avenues. small molecules, biologic antibodies, and of course more traditional things like radiation, surgery. the virus approach often is you are trying to arm the virus to specifically go after the cancer cells. often it is a virus you engineered. i think there have been advances in that regard, some of them in brain cancer, what not to the point where we can fully see how that is going to provide a major new weapon we want to use against most cancers. >> there are many viruses being utilized to try to take advantage of differences in cancer cells versus normal
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cells, that viruses may replicate in cancer cells versus not replicating. this provides opportunities to really disrupt those cancer cells and lead to death of the cancer cells, but as francis mentioned, this is not as effective as one would imagine on the basis of that particular approach and paradigm. however, those viruses that are new antigens, when combined with immune modulation may provide significant opportunities to train the immune system to recognize not only viral particles but bystander mutations that are occurring in the cancer cell, so it may really prime the immune system further. there is exciting work going on with a particular engineered virus and brain cancer, which is showing impressive result that in a subset of patients. we need to understand why some
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patients are responding versus not. those are exciting opportunities. i think that estimate is going to need to be combined with other modalities to bring out the full potential. >> we are out of time. i want to thank you for such an interesting discussion. [applause] we have been shown new selections from our 10 years of the q&a program. tune in for a conversation with robert novak, talking about his reporting in washington. that is today at 7:00 eastern here on c-span. at 8:00 president obama and the first family as they like this year's national christmas tree. that event is organized by the park service and includes musical performances and a reading by the first lady lady of the night before christmas. this year's white house decorations and the capitol christmas tree lighting ceremony
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with members of congress, starting at 8:00 eastern. later tonight, a discussion on how religion impact decision-making of the supreme court. journalists and scholars discussed the issue at a recent event in washington. the supreme court is currently made up of six catholics and three jews. you can watch the program tonight starting at 9:00 eastern, also here on c-span. here is a look at some of the programs you will find christmas day on the c-span networks. holiday festivities begin at 10:00 eastern with the lighting of the national christmas tree, followed by the white house christmas decorations with first lady michelle obama and the lighting of the capitol christmas tree. just after 1230 p.m., celebrity activists talk about their causes. then supreme court justice samuel alito and former florida governor jeb bush on the bill of rights and the founding fathers. on c-span two, at 10:00 eastern, venture into the art of good
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writing. at 12:30 p.m., see the feminist side of the superhero as we search the secret history of wonder woman. at 7:00 p.m., they talk about reading habits. on american history tv on c-span three, at 8:00 eastern, the follow the berlin wall with c-span footage of president bush and bob dole, with speeches from president john kennedy and ronald reagan. at noon, fashion experts on first lady fashion choices and how they represented the styles of the time in which they lived. then a 10:00, tom brokaw on his more than 50 years of reporting on world events. that is this christmas day on the c-span networks. for a complete schedule, go to www.c-span.org. earlier this year, the cancer innovation coalition hosted an hour-long presentation on capitol hill about the need for additional resources and support for cancer research.
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congressman bobby scott spoke about the work of the national patient advocate foundation which is located in his virginia congressional district and is the main organization behind the cancer innovation coalition. he was joined by cancer survivors and others working to bolster innovation in combating cancer. cancerehalf of the innovation coalition members, the executive board of directors of national patient advocate , who is notour ceo in attendance today, but certainly sends you his greetings and his gratitude for your attendance. thank you for being here with us today. in our country today, 1600 people will die of cancer. every single day of this year, .600 people will die of cancer
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by year-end, we will have had 585,720 people in the united states who will succumb to cancer. our nation will have spent $201.5 billion in the health care costs to fight cancer and to provide treatment to the $1.6 million americans -- 1.6 million americans who will be diagnosed this year. the statistics are not numbers. they are families. they are futures not realized, and they are failures. that we all share as we have been waging this war on cancer that was declared 50 years ago. we have made progress, however. between 1998 and 2000, life expectancy for cancer patients increased by approximately four years which translated to about
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23 million additional years of $1.9 trillionly ,n value added to the economy per the journal of health entitled in an article "an economic evaluation of the war on cancer." on behalf of every single family in our nation who has more and the loss of a loved one, thank you for being here today, to listen and to learn about the work of the cancer innovation coalition through project innovation, cancer cures are born of innovation. you will be addressed by experts . they will include our first speaker congressman robert scott, a limited term virginia congressman, and i must say, our dear congressman, who i will formally introduce in a moment. the panel that will address you today includes dr. edith
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mitchell, john harrington, and heather. allow me to introduce each panelist briefly. dr. edith mitchell is an oncologist, board-certified in internal medicine and medical oncology and a clinical professor at the department of medicine and medical oncology program leader of gastrointestinal oncology at jefferson medical college of thomas jefferson university, an associate director for diversity programs and director of the center to eliminate cancer disparities for the sidney kimmel cancer center at jefferson. dr. mitchell has spent her medical career helping in medically underserved areas. she has published more than 100 articles in this united states. she is known throughout this country also as a retired brigadier general.
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the first brigadier general female african-american in the united states of america. her leadership in this country is well documented and her numerous awards she has received both from the military, from the association of community cancer centers, so it is a privilege to the her also as a member of scientific committee of the national patient advocate foundation to address you. john harrington is recently retired. he spent his entire 36-year career with the legacy companies of sanofi. he distinguished himself by the late great teams and producing outstanding results. he retired as a senior vice president and chief commercial officer for global oncology. he built a commercial team in cambridge, massachusetts and
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also staffed the regions with commercial oncology. previous to this role, he led the u.s. oncology business unit. since his retirement, he now serves on multiple boards in the united states. including somerset regional health center, the ada industry advisory board, the concord cancer foundation. it is a privilege to have john with us today. there is a saying we have, and that is the patient never gets it wrong. the speaker you will certainly enjoy as well is heather falwell -- a graduate of american university and washington, d.c., and she now enjoys traveling to exotic locations around the world with her husband, jeff. she lives in maryland with her husband, son, and two rescued cats. her hobbies include vegetable gardens, sewing, and home
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decorating. in the spring of 2012, she was diagnosed with stage four cancer following a craniotomy. her story is compelling. you will certainly enjoy all that she has to share with you. it is my privilege to also share, you will be addressed today by several biomedical researchers and clinicians who while not in this room, has sent their message to you via videotape. you will and today session with the message as well from dr. janet woodcock of the food and drug administration another representatives from the research community. it is a privilege not to be able to introduce to you formally commerce men robert c scott. he is currently serving his 11th term in congress. prior to that, he served in the house of representatives in virginia as a delegate from 1978
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to 1988. in the senate of virginia from 1983 until 1995. he has distinguished himself in his career with a passion for health care initiatives, but he also serves on the subcommittee for civil rights and civil liberties of all americans. as part of his commitment to the developing of universal health care for all and previous congresses, representative scott introduced the all healthy children act to ensure millions of uninsured children would be ensured. he likewise worked to get that same provision into the affordable care act. he is a man of compassion. he is the son of a physician, and it is a privilege to introduce to you representative scott. [applause] >> thank you for your kind
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introduction, and thank you for all that you do. hampton roads is the proud home of the patient advocate foundation, and you have obviously used your experiences with your friends dealing with health care to help others. people are faced with many challenges of what choices in health care they will pursue and how to pay for those choices, and the patient advocate foundation has helped hundreds of thousands of people navigate the health care system. they are also a reliable resource when we went through the affordable care act, when we went through that, and a lot of the provisions have your fingerprints on it. affordability so everybody can get health care. those with pre-existing conditions, those with no unfair cancellation of coverage, no cap on benefits, but a cap on total
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out of pockets of people so people don't go bankrupt. your fingerprints have a lot -- you have a lot of fingerprints on the affordable care act, and i thank you for that. just as hampton roads is the home to the advocacy foundation, we are also home to many other cancer related institutions, one of which the hampton university proton treatment institute is one of just a handful with the cutting-edge surgery that exists only in a handful of centers across the country. we have the cancer center, one of only 68 cancer centers designated by the national cancer institute and is a vital resource for cancer research. both doing significant research in the area of cancer treatment.
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all of these entities will benefit greatly from groups like project innovation coalition and the positive impact they will have. under the leadership of the patient advocate foundation, the project innovation coalition represents a movement which will ensure access to life-saving treatment and medical care. launched just this year, project innovation was born out of the release of the national patient advocate report securing innovation and help in cancer treatment, which identifies institutional and regulatory funding hurdles which are driving up costs and delaying new therapies, which will limit patient access to new treatment. i am sure as our speakers will note today, these obstacles are not insurmountable. with dedication and investment, the federal government can and should be able to move in the right direction and increase access to life-saving treatments.
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the project innovation coalition will continue to show policymakers and other stakeholders why these improvements are so necessary. one of the problems we have in addressing this is some of our legislators will have to change priorities. in the past few years, congress has extended massive tax cuts. at the same time, they cut funding for the centers for disease control and other research areas. many states have decided not to expand medicaid to provide health care for hundreds of thousands of people. notwithstanding studies are showing those states that expand medicaid are actually spending
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less state money than those that did not. the states that expand medicaid are actually saving state money and providing coverage for hundreds of thousands of their citizens. we've done a lot with the affordable care act. but there is still a lot to do. i believe it is the work of the national patient advocate foundation and project innovation will be key to changing priorities and informing how we can make improvements by facing patients desk supporting patients who are facing expensive ways to treat chronic or life-threatening conditions like cancer. once again, i want to thank you for all you have done and all that you are continuing to do to help patients face their
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critical health care choices. thank you very much. [applause] >> let me share that from this point forward, we will essentially have now an address from cancer leaders who are going to speak out to you via video. and immediately, dr. mitchell will come to the microphone and address you. followed by john harrington and then heather will come to the microphone and address you. joel, thank you. ♪ [video clip] >> we are losing our edge. primarily because most of the innovation has taken place outside of this country. >> funds for conducting research and especially clinical trials is going down. as a result of that, many clinical trials are being conducted outside of the united states instead of inside the united states. >> what used to be the great engine of american innovation. it's now finding homes in europe and new business models emerging in china and the far east. >> the urgency now is with more and more people being diagnosed. we need innovation in cancer prevention.
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we need innovation in more cancer treatments. >> the slowdown is largely related to funding of younger investigators. i think we are in danger of losing a generation of cancer researchers as we face this problem. >> not long ago, we had a woman present with an incapacitating headache. she had metastatic cancer to the brain, which was a life rat. at the time of surgery, we were able to take her tissue and send it for molecular profiling so we can take advantage of new therapies. she had a mutation that allowed access to target therapy. she could take a very non-toxic and her disease has gone into remission. >> a major step forward has been in using engineered measles virus to treat a disease. it is called multiple myeloma.
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we have seen a woman who had the disease become resistant to many going into remission for months going on years. innovation of cancer therapies is crucial at this point because we are reaching the limitations of some of the traditional therapies. as we gain knowledge into new therapies, horizons open that we haven't imagined before. in the way cancer can be treated. by increasing innovation, patients will have more access to treatment that can potentially cure their cancer. >> the tumors we treat continue to change so that when we develop a new treatment, the tumor can actually adapt to that treatment and overcome it. we need innovative approaches that overcome that resistance when tumors develop to our
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treatment. >> cancer innovation is essential because that is how we have improved outcomes in the last 10 to 20 years. we have a lot further to go. and it's not just curing cancer. from a nursing perspective, it's returning patients to normal functionality. >> and less innovation keeps up with the pace to changing demographics and changes in diseases, we could fall behind. >> it is now our privilege to welcome dr. edith mitchell.
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>> nancy, thank you very much. congressman scott. and ladies and gentlemen, thank you for being here this morning. it is a privilege for me to speak about cancer innovations. this year marked the 50th anniversary of the american society of oncology. which, in 1964, seven people got together to discuss cancer innovations and how it could move forward. move forward to 2014. it has more than 35,000 members and is one of the largest organizations to demonstrate cancer innovations. so what we have now, not only is asco emphasizing its large
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membership, but it's emphasizing new cancer innovations. and the new and innovative technologies we are using and that show our patients can survive and live longer. certainly, the last 50 years have shown significant advances in overall cancer survivorship. the american cancer society just this year reported that there was a 20% decline in cancer deaths over the last two decades. this decline in cancer deaths means that 1,340,400 deaths were eliminated and therefore, these people survived. also in 1964, there were fewer than 3 million cancer survivors. and now, in 2014, there are more than 14 million people in the united states living and having
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survived cancer. so this is an extraordinary time. it's very important that we continue the innovation in cancer research. certainly, at the meeting earlier this year, in celebration of 50 years of asco, there were demonstrations of what have some of the important advances been that we have made over the last 50 years. one of the first was chemotherapy cures for hodgkin's lymphoma. which was first found in 1965. and since that time, prior to that, it was universally almost detrimental and caused death. the treatment was limited with radiation and surgery. now chemotherapy, today in 2014, more than 90% of patients with
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hodgkin's lymphoma are cured. the second advance was a vaccine approved to prevent cervical cancer. this vaccine against the hpv virus not only allows for treatment and cures for cervical cancer, but other cancers including head and neck cancers. and anal cancer. so the advance in presenting cervical cancer. number three, targeted drug transformations. targeted drug transformations with the fact of cure for rare leukemia, in 2001. the fda approval of the drug means that patients who universally die from this leukemia are now cured of that disease.
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and within that drug, not only has it been useful in the treatment of chronic myelogenous leukemia, but other diseases now have much better prognosis. and the idea of targeted drugs which have fewer than the trans standard chemotherapy, these patients do not suffer as much. so very important. and number four was the advance for the cure of testicular cancer. prior to 1977, when dr. lawrence einhorn put forth his regiment for treating testicular cancer, almost all patients with testicular cancer died in one year. move forward to 2014. almost every patient with testicular cancer not only survives five years, but they
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are cured of the disease. so innovation showed all of these therapies allowed for our patients to live longer. the number five advance was powerful antinausea drugs to alleviate the side effects of cancer treatments. the demonstration at the drug zofran made tremendous strides. not only have we conquered vomiting from chemotherapy and other treatments, but also drugs to treat anemia. and other side effects of cancer have been demonstrated. and what we have, therefore, is a better quality of life for patients. as a result of our investment in clinical cancer research, more people are surviving cancer than ever before in this country.
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two out of three people live at least five years after a diagnosis of cancer. and many are cured. therefore, the cancer death rate has dropped more than 20% in this country over the last 20 years. so the last two decades. if we are to continue this advancement for treating patients and treating the side effects, we must continue the research. this month, october, is breast cancer awareness month. let me tell you about some of the advancements in the treatment of breast cancer. no longer do we have the radical mastectomy, but breast conservation therapy is there and is the standard now, decreasing a lot of the side effects and consequences of
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massive surgery such as the mastectomy. the estrogen receptor and other hormonal and molecular receptors for breast cancer has allowed for drugs that address those specific receptors, allowing for personalized medicine with drugs such as tamoxifen. in early days when tamoxifen was first found, it was given to everybody. now we know which patients are more likely to benefit from the drug. consequently, personalized medicine, meaning, we can get the right drug for the right patient the first time. and that is very important. not only have targeted therapies addressed breast cancer, but other cancers also. colorectal cancer, melanoma, lung cancer, and others. therefore, our innovative
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technologies development of new treatment plans and regiment allows for more patients to survive. not only treatment, but innovative technologies for diagnosing cancer such as computerized tomography or ct scans. digital mammography, mris, gene sequencing, and finding the gene and mutations for cancer so that we can address specifically those mutations, those changes that cause cancer growth and proliferation in each individual patient. so in summary, i have provided you some of the innovative technologies over the last 50 years that have allowed for patients in the united states. but not only in the united states, to live longer and survive cancer, and therefore, have a better quality of life. so whether we talk about
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chemotherapy treatment, targeted treatment, research, patient care, the nausea vomiting drugs, the chemotherapy, the technology for mri and diagnostic imaging so that we can more accurately diagnosed cancers, the molecular technology. how did this come about? it did not happen overnight. it happened through each of these milestones having resulted from careful, basic, laboratory research, rigorously conducted clinical trials, and these clinical trials are made possible by the funding of research and the participation of patients in these clinical trials. you have heard from the video
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that many clinical trials are moved outside the united states. it's important we address clinical research and all the stakeholders involved collectively joined together to move forward in the research. the stakeholders include -- collectively, we have to work together. legislative, scientific, clinical, policy and governmental, the administrative part, institutions of higher learning so that we are bringing newer and younger generations into the arena for treating patients. not only the institutions, but patients and advocacy. all of us must work together to make the commitments to provide
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the resources that permit enhanced innovative research and clinical applications so that we can continue to say it is the legacy of asco and those early scientists and clinicians that got together to say, we must develop innovative technologies to take care of patients with cancer. so we must continue this legacy. the legacy of increasing survivorship for cancer patients, to improve the quality of life for cancer patients so we can say more individuals are survivors of cancer. i am urging everyone, let's get together. everybody has a role and we should all work together. so in summary, yes, we can conquer cancer. thank you very much. [applause]
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>> thank you, dr. mitchell, representative scott, nancy. thank you for the opportunity to share my thoughts on some of the important health care issues facing the patients of the world and also facing the research capabilities of the united states. that issue is making sure that they have funded medications of access to prolong the quality and longevity of human life. while there is a very important and needed focus on health care coverage, expenditures, and financing that representative scott and congress have been working hard to accomplish, there is also a need that they are focused on as well. it is to ensure that the innovation system in the united states that has delivered so many breakthroughs for so many patients in this country and around the world, continues to be funded and understood. i am very fortunate to have been
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able to develop these perspectives in terms of not only working in the united states for 32 years, but also a great opportunity to travel the world in a global oncology perspective. i have seen what has occurred most recently both in the united states and around the world. i've had the great fortune of working on several boards, whether it is the massachusetts biotechnology council, or the national patient advocate association. and also special care delivery systems. most people in this room, your lives have been touched by cancer. i lost both of my parents, many friends and family members and i am a cancer survivor myself. it is that they gives you a razors edge in the need for innovation. it is my belief this country is becoming complacent.
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a nation that can become complacent with opposition as world leader and oncology care. research and development, advancements that have led to significant improvements to survival and patient care. four decades of unprecedented success have left many feeling, "what else is new?" and, "why haven't they cured cancer?" perhaps we no longer hear the national institutes of health, american cancer society, society of clinical oncology, which you have heard dr. mitchell speak about, we no longer hear the facts as relates to the clinical and economic benefit of innovation. do these facts still resonate in washington, state capitals, and most importantly, with patients around the country? i would maintain in the patients, it's early does. there are the benefits, no
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beneficiaries of five-year survival is increasing for many types of cancer. and that includes breast, prostate, colon, and lung cancers, which many of these were thought of as a death sentence. and no patients have real, tangible hope. -- and now patients have real, tangible hope. there's been a steady decline in cancer deaths. it was only 40 years ago when we were saying that cancer deaths were increasing by 4.7%. and now, in the most recent reporting time from 2007-2011, there has been a 15.5% reduction. those are not just statistics. these represent pupils we know. birthday celebrated, anniversaries achieved by those patients suffering from cancer. survival rates have increased 58% since the mid-70's for childhood cancers.
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childhood cancers. children that died most often, especially in leukemia. a 58% increase. and now there are almost 15 million cancer survivors. you will see many of them around the thanksgiving celebrations that you will enjoy next month. i hope that you give thanks to the innovation that helps to save these people's lives. the great news is, based upon investment encourage and commitment, there are now more than 1000 medicines in development for cancer. the promise offers new hope for cancer patients the unlocking of the human genome project. i would maintain the right product for the right patient for the right outcome saving money as well. as nancy mentioned, you lose sight of the fact that since 1988 to 2000, 23 million years of life is granted back to cancer patients. $1.9 trillion from an economic perspective has been the
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improvement based upon cancer treatments. this is a global health success story funded by the united states government. also, the world-class cancer research and development centers, the biotechnical and pharmaceutical industries. with all of these positive outcomes, some facts are neither heard nor understood. the spending on cancer medicines represent less than 1% of overall health care spending. the spending on cancer medicines represent only 20% of cancer treatment. and also, if you look at the average price growth of cancer drugs and medicare part b, it's actually less than medical inflation due in large part to the lowering of generic products. today's insurance covers a lower percentage.
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a cancer patient might face a 4% out-of-pocket, but 7% for outpatient. but now face up to 20% as it relates to pharmaceutical care. just before i retired, i attended an m.i.t. innovation forum where the former ceo stated the fact that the science promise of breakthroughs has never been more exciting, but funding of innovation has never been more challenging than ever. the council does phenomenal job representing the ecosystem of health care in massachusetts. they mentioned the funding which you heard representative scott talk about it certainly has gone down. what is it as a parent, what that means for the project flows. venture firms. if the government is not
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reducing funding, where is the venture firm? they are an important part of financing the ecosystem and investing in fuel life science companies, particularly at the seat and series level of funding. it's down from the peak at 2007. it's hard to see how it's going to return. decisions by cms genetically cut reimbursement had a chilling effect on companies and investors. companies are working hard to show the cost benefit. and what the meeting means in long-term. while the affordable health care act brought many needed changes to health care coverage for, teaching institutions operating and facing many difficult trade-offs. in my role, as nancy mentioned, i had the opportunity to work in other countries. and i would often meet our top investigators in china, the far east, portions of eastern europe.
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in many cases, 70% of patients -- 70% of patients are enrolled in clinical trials are coming from other countries. while we should welcome the fact that there are more citizens in the globe being involved in cancer research and better understanding patient needs, i will tell you, that type of recruitment doesn't represent the diversity of the mecca population that these drugs need to serve. so i ask you to think about that as well. i personally observed the national single-payer systems so that delayed access, while negotiating price and access that were neither patient focused nor fair. as a nation, we are facing a health improvement system that is threatened and fundamentally changed. tomorrow, if you go out to look at a new automobile, you would not ask for the technology of the 60's.
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few of you would ask for an a.m. radio, an iron dashboard with no seat belts. you would not ask for a new computer based on cobalt and the system i remember being in college. is that what we are asking for now? what we are benefiting from right now are the innovations made in the 60's, 70's, and 80's. are we looking at a just good enough approach? just good enough. we have invested a lot. we have seen progress. isn't just good enough? are we looking at cost containment systems that were neither designed for the benefit of cancer patients? i encourage everyone to look at the total value of innovation, putting the lives and well-being of patients first. in closing, i ask you to spend time with your constituents that are involved with cancer innovation as you enjoy the
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thanksgiving day holidays. many go back into their districts and whatnot. i would ask you, if you see cancer patients, ask them what they hope for. they hope for the ability to dance at their daughter's wedding and live a full life. and the recognition that hope is found in the care of their physician and also in the medication they take. ask them if today's cancer researchers believe they have adequate funding for a 10 to 12 year journey. we are already woefully short on oncologist. what does this mean as a nation and the need for oncologists? and finally, if you do see an oncologist, ask them what their hopes are for the future. and ask yourself when you look across the table at your family and your loved one, if faced with a diagnosis of cancer, wouldn't you want the most
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innovative and personalized care for them so you can focus on their survival and not focus on a suboptimal system? thank you. [applause] >> good morning. thank you all for being here as well. two years ago, i would never have imagined i would be speaking to a group like this. two years ago, i was lying in a hospital bed. two years ago, i had just been informed that the tumor in my gut was inoperable. two years ago, i was preparing to die. let me start at kind of the beginning. my first awakening with my cancer was following a seizure when i was ambulance to the
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hospital. prior to that i have visited my primary care doctor but that was pretty much useless. i had headaches that would not stop. i ended up having a craniotomy. i had a mass on the right side of my brain that was affecting the motor skills of my left side. when that tumor was surgically removed, it was diagnosed as stage for metastatic cancer with an unknown primary. that tissue, however, was consistent with lung tissue. what followed were many visits and tests. it was determined we would need to start chemo because they did find another mass in my stomach. my abdomen. we would start chemo shortly. the absolute highest dosage. we had to wean that down because it was too devastating on my blood cells. i never got sick and i never got
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nauseous. i was very bald and very scared. i was another victim of the killer cancer. and as you were herded into an infusion room of like patients, if you looked around that room, you realize cancer does not discriminate. it hits young, old, all races, all genders, all ethnic groups. it feels like striking, you are in it. we sit there patiently while the doctors pumped chemotherapy into our bloodstream. we hope and trust that the practice will get us through this journey. unfortunately for me, after three rounds of chemotherapy, and a fourth because there was some confusion as to the reading of these and, there was minimal change in the side of my tumor. i talked to my oncologist and there were two other courses. we could follow surgery or
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genomic testing. genomic testing was new and may not be covered by insurance. we can toss the ball in the air and see what happens. i opted to go with both. the first was the surgery. that was not successful. as that information was being relayed to me almost simultaneously, the results came in from genomic testing. that result told me i had a met amplification, multiple -- it should react positively to a new drug. shortly thereafter, i began taking it and it was november 19, 2012. in january when i went for the follow-up scan, the rumor -- the tumor had shrunk 60%. in subsequent test, it is
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completely gone. it is due to a simple pill. i have tried to be as concise as i can going through these ups and downs in the discrepancies and the inconsistencies. many failures and disappointments along the way. after genomic testing, the story becomes very short. i share my story with you today not because i enjoy living every moment of it but it's important to me that others be made aware of what is available. i was given the opportunity for genetic treatment. it genomic treatment. through that, we found a drug that specifically treat my cancer mutation. i am sure there are many more victims that benefit from this innovation.
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but they must be made aware. for some reason, that knowledge is not being disseminated to the patients. i don't know why. it could be regulatory. it could be insurance. it could be government obstacles. i do know firsthand that it could save lives. other innovations may provide life-sustaining treatments. i can only address my treatment. genomic testing worked for me but a not work for all. it is time to start investing and educating with these new innovations in mind. perhaps even pastimes. science is moving rapidly. they need to change now. that can be up to you. i strongly believe with the help of science and government funding, all victims will be treated with genomic testing or some other sort of innovation.
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and though a cure may remain elusive, the ability to live and thrive with cancer is certainly well within our reach. i thank you for this opportunity. [applause] >> you have heard from the experts. i want to introduce you to the cancer innovation coalition and have you understand what its mission and its purpose is. and invite each of you in this room to become very engaged in helping us to find solutions so that we can secure the future of innovation and cancer therapy. the cancer innovation coalition was established in january of 2014 by the national patient advocate foundation in collaboration with our colleagues from the nonprofit patient community. initially, the american cancer society friends of cancer research and the cancer's up or community -- health care
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providers, nurses, business leaders, pharmaceutical and biotech industry companies. our members number 65 national organizations. each committed to working successfully to secure the future of innovation and cancer therapy. the cancer innovation coalition will focus on legislative and regulatory tasks in 2015. there is a call later today with the members of the cancer innovation coalition. they will be finalizing their policy agenda for 2015. in the following three areas. there will be tremendous focus on what we need to do in the area of medical trials -- creative clinical trial designed and accelerated approval to
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trials. there will be tremendous focus on the need for dramatic -- genetic testing and continued advanced research in the field of genomics. there will also be deliver it focus in the area of transparency and access. as you know, the affordable care act has provisions that we shall cover clinical trials. however, absent regulatory definition through rulemaking on the main streets throughout america, we have very diverse interpretation. especially we look at the issue of transparency. in the affordable care act, we call for transparency. we call for transparency that
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will not pose any form of discrimination. there are plans for developing pathways and they are in senting physicians -- incenting physicians. it may be a good process. we don't know. but we think it can be an advantage. a clear definition, what is the process for how we determine a pathway? what options are you eliminating? we look at the work that we have ahead of us. we must understand better how the united states can handle cancer population annually of 3.2 million people by the time we get to the year 2030. we know that the fda has worked very deliberately in recent months to accelerate and expand
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its creative approach to clinical trial design. if we look at the friends of cancer research initiative today in collaboration with the fda and multiple members of the pharmaceutical and biotechnology community, what we see is a collaboration that is new and different for the united states. we are leveraging lessons learned and we are leveraging resources across multiple frameworks. shortening the outcome of the trials from a nine year to 10 year wait that normally cost $1 billion to produce one new drug in the united's eighth to a time where we can cut those costs dramatically. there is regulatory guidance to be able to move drugs to market
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more quickly in this united states. we also know that in the united states, if we are to secure the future of innovation, we have a model we can look at in the united kingdom. the clinical trials in the united kingdom was at 3%. we don't have the money to continue this and we are losing our citizens to this disease called cancer. they have established the national nickel trial network where every single clinical trial is registered so that the public can get to that information. easy instructions on how to enroll. they couple that with the
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creation of the clinical trial registry through which if i have an interest in funding a clinical trial and you have an interest in funding the same clinical trial, we can register with that body and we will be partnered together. introductions will be made. we have multiple trials in that country that include multiple manufacturers, nonprofit groups. they have been able to move their cruel and clinical trials since 2001 to 17% annually. it is a nation with sensitivity to the needs of its population. it is a nation that wants to embrace the future and make life better for everyone in this country moving forward. one way that we can do that is to deal with securing innovation in the field of cancer. let's remove the statistics
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about the 70% of families that have a cancer diagnosis moving to bankruptcy within six months of that diagnosis. let's get rid of that. let's get rid of the statistics that tell us we're not finding the success we need. demand higher bars be set in the research community. and we have to those moving forward. you are in a position in the united states congress to work with us. to have introduced regulatory reform measures that can improve what we have currently in statute. you are in a position in congress to introduce new legislation that perhaps canon sent -- can incent more funding for our research bodies. we have lost 20% of funding to our federal agencies whose jobs are to start the research at the
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bedside. that's where it begins. there is no one that can step forward and fill that gap. when you combine the loss of 20% of revenue with the research funding of the federal government and the escape of capital to foreign markets, you can see where we are today. 70% of our clinical trial approvals are occurring overseas. 30% are accruing in the united states. it means we lose jobs, revenues, and the patient's that call us a patient advocate foundation are underinsured. they need options that are not at the market and need access to clinical trials. they are often denied that access if it is operated in another country. through the cancer innovation coalition and project innovation, we will be moving
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forward with multiple regulatory and legislative acts in 2015. we want to partner with each of you in this room. we need your ideas. we need your ideas that you represent and the community you represent. and the constituents in your own district so we can understand what is needed to achieve resolution. on february 11, we will be at the national press club and at that point, we will announce to america the blueprint of the cancer innovation coalition for the project innovation remedy, working with members of the united states congress and regulatory officials today. i am pleased to have the opportunity to give you a bit of academic background for the cancer innovation coalition and what we want to achieve through project innovation. we are going to take question
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and answers immediately after we hear from one additional group of experts, including dr. woodcock from the fda. we continue to try to connect the dots of innovation to patients. >> it's an exciting time because we have the opportunity to make the most advanced clinical decisions available to every cancer patient regardless of where they live and what their socioeconomic background is. and regardless of what practical resources they may have available to them. >> there is an expectation. all things are taking place right now. engineering, research, and i'm going to go someplace that's going to be innovative. >> overall, one of the goals of cancer innovation is to improve the outcome. personalized medicine, advanced
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diagnostics. it treats cancer. >> can we afford innovations? we can't afford not to innovate. the status quo gets more expensive year after year. >> i think we are on the cusp of an information revolution. >> it is a few months, a year of survival. it has been amazing. we continue with the research to make cancer a disease --
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>> it is on the edge of revolution. we will feature and target treatment for problems that cause cancer. it requires the targeted therapy and the development of diagnostics as well as targeted treatment. >> each person's genetic makeup and their physical makeup, the individual war on cancer for each cancer patient -- it is critical that we get patients engaged. and also leveraging things to help us better understand what going on in medication. we tried and failed.
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>> so you've heard from a number of people today. and now it is your turn. what we would like you to do is invite you to address your questions to any of our panelists. certainly, congressman scott would be pleased to have him also join in this dialogue and in this discussion. >> so you've heard from a number of people today. and now it is your turn. what we would like you to do is invite you to address your questions to any of our panelists. certainly, congressman scott would be pleased to have him also join in this dialogue and in this discussion. so the floor is open for questions. if you could, go to the microphone in the center of the aisle.
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announce your name and what organization you might represent. if we have left you speechless, that could be a good thing. if we have left you energized, that's even a better thing. you certainly have our contact information at project innovation and national patient advocate foundation. don't hesitate to advance your questions and your ideas. it will take all of us together to develop a strategy to improve innovation and cancer for 300 million people in this united states. thank you for your time and attention. thank you, congressman scott, for being with us. heather always gets it right. john and edith, thank you sincerely.
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we want to thank nancy glick and joel payne who have helped us with this meeting. lisa hughes, my colleague from the national patient advocate foundation is in the back of the room and several staff members that have dropped in. grab a snack as you leave, and thank you again. thank you. [applause] thank you. [captions copyright national cable satellite corp. 2014] [captioning performed by the national captioning institute, which is responsible for its caption content and accuracy. visit ncicap.org]
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>> love this week, we have been showing selections from 10 years &a" program. join us for a conversation with robert novak at 7:00 p.m. eastern here on c-span. p.m., we will:00 show you president obama and the as they light the national christmas tree. it includes musical performances and a reading by the first lady. also, this years white house decorations and the capitol christmas tree lighting ceremony with members of congress. that started a clock p.m. 8:00 p.m.ea -- at eastern. a discussionght, theow religion impacts
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supreme court here in washington. it is currently made up of six catholics and three jews. here is a brief look. >> i would say in the hobby lobby case, the case having to do with the right of a private provide, to refuse to contraceptive health coverage for their female employees, i would say that justice alito's opinion in that case was very much to -- very much influenced by the preference to accept the notion that a corporation which is an artificial being can have some manner of religious belief system transferred to it by its owners. tode from being pretty close ludicrous -- [laughter]
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it is highly debatable in terms of social philosophy. believingto the case that corporations, because they >> because they are in some probably are they capable of absorbing their religious preferences and value system of their owners. >> the lighting of the national christmas tree, and michelle obama.