Even mexico in some senses. They have no choice. People think when you go to india you are going off for some exotic treatment and hes going to bang la door which is our like silicon valley. This is very high tech. Its sophisticated. And just from a personal perspective and i think from the perspective of a lot of patients, we need to allow that to happen here. The patient needs to have that choice. Mrs. Carr totally agree. When there is so much at risk and on the line, parents are willing to do whatever it takes. When you are telling someone there is a zero percent chance and someone saying we have this option. Would you want to try that . To be able to do that is important. I appreciate you getting my attention and giving that response. Im from i grew up in rural northwest alabama. What people would consider dirt poor. Particularly interested in what the Huntsman Cancer Research is doing and in rural areas. Is that nationwide . Actually because were surrounded by vast rural and frontier populations, we just are in a really great place in the country to make this a focus. We believe that the work were the mountain nd west has complete relevance to rural and frontier areas. For example the symptom management tool we developed, we know that patients undergoing chemotherapy who are rural and frontier patients drive long hours away from Medical Center after their treatment and they go back home and they are facing debilitating sometimes challenging side effects. And so we developed a tool that touches base with them on a regular basis and with their caregiver and we found that that has really alleviated their symptoms quite dramatically, and also reduced caregiver anxiety. That kind of thing is a way in which we reach out and try to support our rural and frontier patients and their families during the course of their treatment. And what were learning in utah should be relevant around the contry. Mr. Palmer if the chairman would indulge me one more question. Its an issue that this committee has been focused on, particularly the chairman and Ranking Member cummings, that is drug prices. I saw a study here from the Sloan Kettering cancer certainty, about 3 billion wasted in Cancer Treatment where the Drug Companies are putting more medicine in the vial than they need knowing its more than is needed for the treatment. Thats basically being thrown away valued at 3 million. Would any of you like to comment on that . Are you aware that have . Is that something you are aware of . I would recommend it was i got the article here. If i may well interenter it into the record. Without objection, so ordered. Mr. Palmer with that, mr. Chairman, i yield back. I thank the gentleman. I recognize the gentlewoman from florida, mrs. Demings, for five minutes. Mrs. Demings thank you so much, mr. Chairman and to our Ranking Member. Mrs. Carr thank you so much for talking about chad. I didnt know chad. But i raised three sons. And i know chad. To hear your description of him he represents thousands of children throughout this contry, millions throughout the world. And in your written testimony claimsked about the dipg about 300 lives a year and you mentioned that thats really not a large or huge number, but which child would we not do everything in our power to save . If it was one child, 200, or 300, which one would we not do everything within our power to save . I also understand that Chad Foundation is part of a larger group of organizations looking for clues to dipg. Together these groups are funding a registry to collect information on the disease, is that correct . Mrs. Carr yes. The dipg collaborative i spoke about has formed the registry. So when chad passed away, we donated his tumor postmortem and it was the university of michigan has some of that as well as physician who is now going to a Childrens Hospital and it is also kept in the registry so it can be utilized by scientists around the country. So that is one investment this collaborative has made to really get the word out this is a way we can impact research. Mrs. Demings last month n. C. I. Announced it was announcing its largest study of american africanamerican cancer survivors in the United States. Drawing on an existing population base cancer registry, the Detroit Research on cancer survivor study would look at factors that affect survivor rates among africanamericans diagnosed with cancer. I know we talked a little bit about that, but doctor, could you explain the range of social and biographical variables that the study might consider as it elates to cancer survival. Thats a good question. Its not my area of expertise. But i would expect that they are going to be a range of issues including what the underlying types of diseases, the patients have had and what kind of access they have had. Dr. Jaffe for those treatments. When patient who is healthy gets cancer its easier to receive the treatments we have than patients who have other underlying comorbidities. I would think that would be a major issue depending how much access to good care the patients have had prior to developing the ancer. Getting access to the right places is a very challenging issue for patients who dont have the means. I would comment i think this is one of the things thats so important about the National Cancer institutes efforts in that the n. C. I. Can really bring together these nationwide consortia and registries so we can get information about survivorship and outcomes for patients across the entire country. Dr. Beckerle that eliminates the kind of sampling error that can happen if you are just looking at one site in one state that might be different than what happens in another place in the contry. This is a really important contribution of the National Cancer institute to our national health. Mrs. Demings thank you. Using data from the nci cancer childhood study published Research Revealed a reduction of second malignancies among survivors of Childhood Cancer. Using population data researchers were able to determine that over the course of 15 years or more, children treated with lower does doses of radiation were less likely to develop second cancers. Can you comment on the value of this sort of longterm research . Im happy to comment on that. I think what that study points out is progress that we have made in understanding the consequences of the treatments that we use. And radiation is a good example. Its now clear that radiation can promote the kind of changes in cells that ultimately lead to cancer. Therefore those treatments have to be used at appropriate doses and minimized wherever job. Wherever possible. Its being played out now and the observation there are fewer second malignancies. D jaffee just related to that. This area of Childhood Cancer survivorship is really important. We have this Great Success now in our ability to street Childhood Cancers, even though we have a lot more to do. But what were now beginning to see is that there are dr. Beckerle what we call late effects of these treatments. Sometimes due to the radiation or chemo chairman. Sometimes psycho social effects,er if tillities effects, seths. Etc. There are many, many things where research is required and will be really helpful to address the current unmet needs of individuals who have undergone a successful treatment for Childhood Cancer so we can make it better going into foot ture. Mrs. Demings thank you so very much. I yield back. I thank the gentlewoman. Well now yield now recognize the gentleman from iowa, mr. Blum, for five minutes. Mr. Blum thank you, mr. Chairman. Thank you to our panelists for being here and thank you for your emotional testimony, mrs. Carr. I was standing in the doorway when you started to testify. Im the father of six children and i started thinking about every one of them. Im so proud you are here today and serve the cause well. Im sure chad is very proud of his mom today as well. Mrs. Car mrs. Carr thank you. Mr. Blum i have two questions. First of all we look at the dollars spent by governments and by people who donate and contribute to research, Cancer Research, alzheimers research, whatever it may be. And im always concerned as a career businessman what kind of collaboration is there between the disparate Research Facilities and institutes . Are we doing enough to share the information . Theres collectively there is not enough, trust me there is not enough Research Going on. Im a huge advocate for what you want, huge. But there is a fair amount going on, billions of dollars being spent. I want to make sure that were sharing that information between all of the researchers. So maybe people involved in Research Facilities could could you give me your thoughts s there enough collaboration. If there is not, what can the federal government play a role in that . Or dr. Jacks you raised an important point. Were facing that problem increasingly by the day because the amount of data were generating today is greater because of new technology. So the answer is yes. There is considerable collaboration and interaction. The National Cancer institute, Cancer Centers program would be one example. A network of Cancer Centers throughout the country who interact and share information. But there is still a gap. In fact, the cancer moon shot recommended the development of a National Infrastructure to facilitate the sharing of cancer data to store it more appropriately, to make access easier, to develop the kind of Software Tools necessary to analyze it. So as to break down any existing barriers that do currently exist to improve that situation. So there is examples of progress, but there is actually still a need. I think the moon shot funding that you have funded will help us close that gap. I could give awe few examples of whats already ongoing. So we now have through the n. C. I. s efforts the development of an open access resource for sharing cancer data via the genomic data comments. They even brought in outside groups such as foundation medicine, which will double the total number of patients information into this. Dr. Jaffee this is an open access available to everyone. And again as dr. Jacks said, one of the Blue Ribbon Panel initiatives is to start to increase this and use the funding that was given to us from congress to now increase this ability. Also the n. C. I. Is developing genomic cloud pilots and these pilots will again expand data sets that will include imaging, will include immunotherapeutics. So that we can really start to look at different cancers and better understand the whole Tumor Microenvironment and not just the againics. There are other factors that contribute to it. In addition it will allows us to look at rare cancers and try to use cancers that have been put into this database, it will increase the number. We can now make more hypothesis sees of why patients get these cancers and identify targets to develop drugs against. Dr. Beckerle all of us in the Cancer Research community are desperately working to improve outcomes for cancer patients. We know that none of us as individuals or even within the institutions hold all of the knowledge thats necessary. So we are naturally inclined to collaborate and to share information. And the National Cancer institute is really helping to support us in that effort. An example that i would give thats related to our new knowledge and the Precision Medicine era is that we now are trying to test really exciting new therapies that are only relevant for a small subset of patients that have a particular genomic signature. Particular d. N. A. Signature. And so what that means is that even for a disease like lung cancer that is a relatively common disease, the patients with a particular type of lung cancer that might be eligible to contribute and to participate on a particular Clinical Trial might represent less than 10 , even 1 sometimes of the total patients. So the only way were going to really understand whether that treatment is going to work is if we have a National Network in which we find these patients across the entire country and bring them together to participate in a Clinical Trial. Thats exactly the kind of infrastructure and support that is provided through federal funding by the National Cancer institute. Mr. Blum my time has expired. I would like to say theres a lot of things republican, a loft things the government shouldnt be involved in that were involved n one of the things we should be involved in is researching these hideous diseases. As for 21st century secured act and i stand against the president s budget cuts. We need to spend more not less in these areas. I thank thank you very much. God bless you, mrs. Carr. I yield back my time. I thank the gentleman. I now recognize mrs. Watson coleman from new jersey. I guess well go to mrs. Lawrence, michigan. Mrs. Lawrence thank you, mr. Chair. I want to acknowledge mrs. Carr and express my deep condolences for the loss of your son. Being from michigan we watched the love, the support, and your advocacy. And just know that as a ichigander, chads inspirational fight against cancer and your devotion to raising funds and awareness for dipg is remarkable. Mrs. Carr thank you very much. Mrs. Lawrence so proud of you. Not unlike political parties, Michigan State and the u of m fans dont often agree on everything, however chads battle with cancer and your commitment to his continuing legacy has crossed across the fan lines and united spartans and wolverines behind a common cause. Cancer research is something that impacts all of us not just democrats or republicans. When the president released his proposed budget, i was devastated to see the draconian cuts being made to n. I. H. In your testimony you discussed the major strides that n. I. H. Researchers have made toward cancers such as leukemia. As you noted 40 years ago leukemia had a 10 survival rate. Today the survival rate is almost 90 . That represents just one of the countless medical achievements that has been made as a result of funding to n. I. H. Mrs. Carr, as someone with firsthand knowledge, i would like to give you an opportunity to speak to us as members of congress who have the ability to increase funding to n. I. H. , to discuss the merits of research being done by this funding. Mrs. Carr thank you. Wed like to call it in the dipg community what we hope for is the home run strategy. Pediatric leukemia was considered a rare disease not too long ago. They focused. And i think whether or not you consider dipg, its rare. No doubt. But brain tumors in general are not rare. Pediatric brain tumors are the leading cause of cancer death in children. So focusing on pediatric brain tumors is something that makes sense. For us the strategy that were taking and as far as our funding goes, which again is a drop in the bucket, is that if we focus on the hardest tumor and wellly focus on it and now with the momentum that there is tissue now. They can study the samples. The c. E. D. And learning about blood lity to pass the brain barrier with a catheter which is the Clinical Trial chad was a part of. If we really focused i feel like even raising the bar from zero to 2 is a movement in the right direction. We have seen in michigan alone a lot of researchers are now because were willing to provide some funding, and there is a big room to increase success rates there. But they are looking young scientists are now interested in looking into this disease. And thats a really wonderful thing. We talked about Clinical Trials being important. A lot of children with dipg, chad was one of the lucky ones that was able to participate in a Clinical Trial. A loft these children, they dont meet the requirements. And they arent even able to participate. As a parent i can tell you one thing, when youre basically deciding on the treatment plan for your child, because thats what this is, the doctors dont know what to tell you. Radiation is the only thing that they know to tell you, which we know now causes secondary problems. So in the end if they were to survive, they are not they are not out of the woods. There are going to be other secondary cancers most likely. Chad received 30 rounds of radiation. So i think the way were looking at it is focusing on the toughest, allowing that to open the floodgates for the other more treatable tumors and focusing on those pediatric tumors because children are not adults. Mrs. Lawrence i want to thank you again and commend your commitment to fighting. And again to say i hope my colleagues are able to take your stories as a reason for why we cannot allow these proposed cuts to n. I. H. To be implemented in the upcoming budget. And just on a personal note, everyones strives to have their life be a legacy or be a mark or to do something that will be reflected in history as game changer. Your son did that. And with your fight, his life will mean so much more to so many people. So thank you so much. Mrs. Carr thank you, we believe his five years hes accomplished more than most people accomplish in their whole lives. Mrs. Lawrence thank you so much. Thank you. We now recognize the gentleman from wisconsin, for five minutes. Just a quen question. What are the funding requirements for 21st century cures is working Cancer Research. Mr. Dr. Jacks what are the funding requirements . Are you talking about the nature of the applications, that sort of thing . Mr. Grothman how much do you anticipate dr. Jacks we outlined several recommendations, each of wh