will start the hearing and i do apologize for the delay today the subcommittee is meeting to review four bills relating to breast cancer h r nine ninety five the met the mammogram and hundred forty the breast cancer education and awareness requires learning young act of two thousand and nine by congressman wasserman schultz from florida and h r two to seven and the eliminating disparities in breast cancer treatment act of two thousand and nine congress sponsored by our our own member congresswoman castor from also from florida and i want to thank all the sponsors of these bills for the hard work on raising awareness about these very important issues and i should also point out that they have been spending some time over the last six months trying to have this subcommittee have this hearing and the reason for the delay was of course who are dealing with health care reform now aside from the non skin cancer breast cancer is the most commonly diagnosed cancer in women the and i h estimates that over one hundred ninety thousand new cases of breast cancer will be diagnosed in women in two thousand and nine and though we have seen breast cancer death rates decline since ninety still approximately forty thousand women will succumb to the disease this year and that's why the work of advocacy groups in the key sponsors of the bill today is so crucially important we have made great strides in detecting and treating breast cancer but there is still much more to be done and much more to learn while all of these bills address concerns related to breast cancer they all focus on different aspects of the disease from screening and early detection to treatment and quality improvement and they all raise very important issues with respect to how breast cancer patients or any other patients for that matter are being treated in the medical environment we live in today not every american has access to good preventive services not every american has the good fortune to have an insurance plan that covers the medical care they need and that's why we're working hard trying to pass health reform legislation that will improve access to quality and affordable health care for every american it's an active health care reform legislation will dramatically improve our efforts in the battle against breast cancer particularly important are the insurance reforms in drafting america's affordable health choices act we took the same tact as ms de lauro did in taking decision making authority out of the hands of health insurers and putting it back in the hands of patients and their doctors where it belongs in addition the subsidies offered in the exchange and expansion the medicaid program under health care reform will cover childless adults and mean that many low and middle income women who might not have access to health insurance today will be covered in the future for the first time and that means they will be able to access a doctor and receive treatment when they need it a key component to winning the battle against breast cancer is effective and appropriate screening which both miss west and shells and mr now as bill seek to address early detection of breast cancer has long been acknowledged as an effective way to improve outcomes in fact studies have shown that the five year survival rate in women who receive timely treatment due to early detection is it eight percent and that's why the u s preventive services task force has recommended that all women over the age of forty have a mammography screening every one or two years now i agree with my colleagues that early detection and prevention is key key to survival and that's why  reform we bolster the very important work that the u s preventative services task force does by providing increased funding so that they can analyze more studies and make more prevention recommendation the evidence based recommendations that receive the highest ratings from the task force such the screenings will be covered by all insurance carriers participating in the health insurance surance exchange and by medicaid and while medicare already covers the services under health reform beneficiaries would no longer face questioning requirements to receive in addition health reform we must also improve the quality of care that is provided in this country as ms castro seeking to do with her bill tens of thousands of americans die due to preventable medical errors every year billions of dollars to waste on low quality care we as a nation must do better improving quality is a concept we picked up in health reform as well we require the secretary to establish national priorities for quality improvement and we also create a center for quality improvement the center will develop and encourage the use of best practices for quality assurance and will provide implementation grants to those who are already doing innovative work to improve the quality of care using breast cancer as an example we can and must do better to ensure that all americans receive the highest quality care and that we collect data that will help us continuously improve as more information becomes known about the medical system and specific pieces diseases and i want to thank all of our witnesses i know we're going to start after opening statements with the members panel is it i would say it's i guess clear from my opening statement that in many cases some of the things in these bills hopefully will be addressed in the larger health care reform bill but i don't mean to suggest that that takes away from the need for us to have this hearing today or possibly or to move forward with these bills it may very well be that some things are included and some are not and so this is a legislative hearing and the intention would be to move these bills but we also have to see included in the health care reform as well so thank you and with that i would yield to our ranking member mr deal thanks jim blown thank you for holding hearing and thanks to our colleagues for appearing before us well the other distinguished witness testimony we will certainly look forward to hearing all of us i think understand the importance does somebody else understand the importance of the topic this before us today many of us have co sponsored many of the legislative agenda items that are before the committee for want to co sponsored h r seventeen forty because i think it's important for diagnosis and treatment of breast cancer as well as the continued effort to educate young women about this particular disease now we have dealt with a variety of issues over the years and most recently highlighted by testimony from ranking member barton about a constituent to in the midst of dealing with breast cancer had her policy canceled the house has dealt with that when we passed h r seven fifty eight by an overwhelming vote of one hundred twenty one to two so we have begun the process i think of dealing with many of the issues surrounding the treatment and diagnosis of breast cancer but as we continue to deal with how we can best combat this disease i believe that is of the taxpayer dollars that we must make sure that these dollars are being used in the most appropriate way particularly those that are with the  thing that he has higher awareness of this i just want to add a couple of facts one advances in cancer research and treatments have greatly improved survival rates in the one nine hundred sixty s a woman diagnosed with breast cancer at only three percent chance of living longer than five years now it's eighty nine percent of hispanic african american women have a lower survival rate than the rest of the population so clearly we have a lot of work to do on reducing racial disparities and finally  friday october sixteenth is national day it's a day when radiologist provides free or discounted screening mammograms and hopefully the women in my district and all those who can hear us at this hearing will  unfortunately being the best is not the entire story while our health care system is a benefit to many with breast cancer the disease is still the second most common cancer that women are forced to deal with  are sobering statistics that our thoughtful consideration therefore i would like to commend the efforts of our panelists and all those who strive and every year to bring attention and awareness to a disease that has impacted many of our friends and colleagues some of whom are sitting here with us today as we well know i applaud their efforts to raise the awareness and early detection of breast on our nation's patients and i look forward to hearing their testimony  however we must also take a step back and look at the legislation before us in the context of the overall reform plan were reported in this committee at the end of july the bills before us today address federal requirements on insurance plans that would in essence i think become moot because of h r thirty two hundred thirty two hundred words on law this congress would not be deciding what benefits insurance companies must  is still a brutal killer in america but we're going to continue to fight and we are going to make progress and we're going to make progress in large part to the leaders who are here today to my colleagues here on the health subcommittee members of congress that represent hundreds of thousands of people and many many women who have struggled with breast cancer  legislation mr chairman our colleague congresswoman dr donna christiansen is my partner on my bill h r twenty two seventy nine b eliminating disparities in breast cancer treatment that we will consider today i would like to thank her for all of her attention to disparate treatment that health care in america is no secret that quality health care in the united states is not equally accessible to all of our communities as a committee we have worked diligently for the better part of this year to improve health care in america and to make quality care affordable and accessible for all and we are closer to that th ever before but we still have underlying issues of disparate diagnosis and treatment that must be addressed directly and one of the most disturbing involves breast cancer and women of color overall breast cancer survival rates in the last two decades have improved with one exception minority women women of color suffer from significantly higher death after diagnosis than white women the american cancer society report that delays in receiving care after breast cancer diagnosis are greater for african american women than for white women african american women with breast cancer are less likely to receive standard therapy than white women african american and hispanic patients are significantly more likely than white patients to be diagnosed at a more advanced stage breast cancer and regardless of insurance status african american women are almost two times more likely to be diagnosed with an advanced stage of breast cancer than white women and hispanic women are about one and a half times more likely to be diagnosed with an advanced stage of breast cancer than white women african american women are ten percent more likely not to receive tests to determine if breast cancer has spread to axillary underarm limbs this screening is essential to preventing the spread of cancer to other parts of the body health insurance status income and educational background are directly linked to irregularity in minutes during this vital screening substantial disparities remain regarding cancer diagnosis and treatment so in order to eliminate this on acceptable variance in treatment and quality care it is necessary that we create real incentives and requirements for medical professionals to provide the best care all patients receive modern and standard treatment for their condition so our bill put an end to the inequities in treatment for breast cancer and how it will help ensure that every patient has access to the most appropriate care the legislation will implement breast cancer treatment performance measures requiring the secretary of h h s to work with the national quality form to develop standard best practices for breast cancer treatment these measures will address patient outcomes the process for delivering medical care related to breast cancer treatment patient counseling and engagement and overall patient experience position care coordination and then the secretary will develop a six year breast cancer treatment quality performance initiative and yours one hundred three physicians will be encouraged to follow the new recommendations and report their practices on a voluntary basis and the reporting will be required reporting will the care provided the secretary will be required to report to congress so we can keep track of the progress mr chairman this legislation will help eliminate disparities in the treatment of breast cancer we must continue to use all of our gentlewoman  thank you mr chairman i'll put my full statement in the record but i do want to thank all of my colleagues  that breast cancer kills minority women at a rate of sixty percent higher than white women mostly because of inequities and access to quality affordable care and i want to give a shout out to an the work we did last year on the breast cancer environmental research center was very important this is something the environmental pressures that come to bear on tennessee women is something that has  gained a lot of attention in our state and has caused a lot of concern and we have several facilities that are doing a great deal of wonderful research cancer institute to vanderbilt ingram cancer center and the many pearl cannon cancer center and so i feel like the good work that is being done there in tennessee we have three thousand one hundred seventy new cases of breast cancer that will be diagnosed this year and nine hundred ten women will probably end up losing their life to this disease we know the legislation before us that will help us just the good ongoing research equally in the manner that the legislation we passed last year did and we look forward to a radical the disease and certainly making a difference in the lives of men and women that are affected by this and i thank you for the american indian women is lower than any other population group of women so while we've made great progress in the fight against breast cancer much of the credit of the witnesses we'll hear from today and continuing with the legislation before thank you gentleman from georgia mr barr so high i know because my mother who turns eighty nine years of age today is a thirty five year survivor of breast cancer cure and breast cancer is a huge challenge and can only happen with good science adequate funding effective treatments and greater awareness and education these bills were addressing here today represent small but important steps along the way october is national breast cancer awareness month this gives us an excuse to come here today dear to us who have battled breast cancer my wife among them for the last three years we all know the statistics breast cancer is a second leading cause of death of the leading cause of death of women aged forty to forty nine this year alone with forty thousand women in as we have learned mammograms on their own did not detect every malignant tumor for women and particularly high risk risk of breast cancer when you have a strong family history of breast cancer where women mother grandmother daughter was diagnosed with breast cancer  well as my colleagues on the subcommittee to pass this legislation one of the other four thank you very much thank you the last thing that any woman should be doing at this time is fighting with their insurance company the bill does not mandate it does not mandate a forty eight hour hospital stay for patients to go home nor does it forty eight hours as a pay special attention to breast cancer awareness during up during the month of october it's important that we focus on awareness and help women pay attention to their breast throughout the year and before i go further i really want to give my deepest gratitude for the efforts of support for me and the fact that i was able to share my story and talk to you about our mutual experience before i shared it with everyone else thank you very very much you've been there for me every step of the way breast cancer strikes women from all backgrounds all races all ages and all ethnicities it strikes black and white rich and poor those with access to quality health care and those without but many women too many women do not know their specific factors or their family history and this is especially true with young women breast cancer as an older women many young women think breast cancer will never happen before they turn forty but we know that young women can and do get breast cancer in fact nearly twenty four thousand women under forty five are diagnosed with breast cancer in the united states incidence of breast cancer are much lower and young women than older women young women breast cancers are generally more aggressive they are diagnosed at a later stage and they result in higher mortality rate after talking with many health care professionals in the breast cancer community and the centers for disease control and prevention it became clear that there was an urgent need to help build awareness among the often overlooked group these conversations led  never dreamed i would need protection myself i thought i knew all of my risk factor that's why i performed self exams and saw my doctor regularly but after i was diagnosed i learned i had more risk factors than i was aware of i had lifetime many young women are unaware of the earlier will give all young women the tools and information they need to take control more control of their health it will raise awareness of their personal risk and the importance of paying attention to their b on a fairly regular basis i was familiar enough with what my breasts normally felt like so that when i i knew it didn't belong there the earlier young women and medical professionals about the importance of family history warning signs of breast cancer and predictive tools such as genetic testing that can help high risk women make informed decisions about their health it will also provide grants to organizations dedicated supporting young women diagnosed with breast cancer these grants will help young women the challenges that they face preservation body image and self esteem as well as help them manage and understand their risk and again when a young woman is diagnosed with breast cancer at twenty eight years old for example if they don't even have a boyfriend and they're faced with breast cancer and having a double mastectomy and dealing with chemo therapy and facing their own mortality on top of that having to think about how to preserve their fertility that is a challenge that young women who are diagnosed with breast cancer and thirty thirty four co sponsors in the senate the early active garnered broad public support for more than forty advocacy and health organizations many of whom representatives are behind me here today and i just cannot thank for their support for their expertise and five of these women die every day here in america having no information when you're thirty five about breast cancer and finding a lump in your breath is what is really scary over the past year i've met with oncologists and other health care thank you so much really you know even now you give me a lot more insight into what needs to be done and what we need to do and i i just want to stress again i know that there's been some discussion today about  you know what's in the health care reform bill and how some of these bills relate and some parts of them actually are included but as i said earlier this is a legislative hearing and so we do intend to move bills and will look and see what have one panel you know this way we can save time and and have a series of questions that way so i would ask the second and third child members to come forward if you would panel so i just i want to thank you for your suggesting that you be with the other panel but i don't want anyone to think that that prejudice is what we do in the future we understand that the administration  normally not part of another panel so let me introduce everyone starting on my left is dr steven taplin who is chief of the applied cancer screening research branch division of cancer control and population science for the national cancer institute which is part of the national institutes of health then we have dr otis webb brawley who is chief medical officer for the american cancer society ms jenny who is president of the susan g komen for the cure advocacy alliance debra l ness who is president of the national partnership for women and families dr george w sledge jr who is day professor of oncology at indiana university medical center and the cancer pavilion ms francisco who is president of the national breast cancer coalition and finally dr  wife who is president and founder of breast cancer dot org so thank you all for being here and i think you know we we have five minute opening statements that become part of the record i'd like you to try to keep your comments to the five minutes if you could and we may you may get questions from the panel that you have to get back to later in writing too but we'd like to try to answer the questions today so we'll start with dr  chairman and committee members thank you for the opportunity to speak today i've also provided a written document that elaborates on my testimony with greater detail and as you've heard i'm dr stephen tap on the chief of the applied cancer research branch at the national cancer institute before coming and i spent twenty years as a practicing family physician while also managing an organized breast cancer screening program and conducting screening and research group health cooperative integrated health plan and in seattle washington there's more than fifty years of research in breast cancer screening and treatment that is now having a positive impact on lives the lives of women research shows that the breast cancer incidence increases markedly as women age each year among one hundred thousand women one point four cancers are diagnosed in the age group twenty to twenty four but as you can see here in figure one the rate rises to a peak of four hundred fifty four in women ages seventy five to seventy nine the benefit of research for these women is that breast cancer death  fallen across all age groups since one nine hundred seventy five since one thousand nine hundred the rate of decline has accelerated and the annual percent reduction in mortality has been a fairly consistent two to three percent per year over the last ten years however let me be clear that i understand it is not the research that changed their lives it is the choices women are making and the changes in therapy that physicians are implementing that has had the impact the key is those changes are guided by evidence from research the mortality reduction we are seeing is due to both improvements in treatment and improvements in screening and elegant set of modeling studies demonstrated approximately half the reduction in mortality among women greater than forty is due to screening that in fact screening has become a large part of health since evidence from randomized trials showed that mortality reductions were possible however the integration of screening into care has not been simple because the evidence as was sometimes ambiguous results from breast cancer screening trials show less benefit for women ages forty to forty nine furthermore the benefit appears much later in the lives of these women ultimately however the results of randomized trials led to national recommendations and increases in breast cancer among average risk women in the united states beginning at age forty u s preventive services task force as you heard suggest considering screening every one to two years starting at age forty screening rates are at about sixty six percent within the last two years in the united states today it is clear that not everyone is at average risk as our knowledge of the genetic determinants of cancer has grown there has been increased concern regarding the high risk population has proposed recommendations that women a greater than twenty five percent lifetime risk for breast cancer should consider magnetic resonance imaging this is about one to two percent of women these recommendations are based on observational studies showing that technology has a higher sensitivity in breast  dense breast tissue unfortunately it also shows more files of false positive tests that occur then occur with mammography we need national work to show that use of m r i and high risk women actually affects mortality  and sponsoring studies of how to reduce the false positive testing with m r i but it continues to be a limitation one approach would be around the problem is to examine biomarkers and biomarker profiles that my identity the legal cancer or become a screening test access across most races and ethnicities including white women in lower socio economic groups are less likely to be screened in large part because they do not have access to preventive care people with less than twelve years of education are one of the groups in the united states who has not seen a significant drop in breast cancer mortality the centers for disease control and prevention has managed a program to encourage access to screening among low income populations that is a step towards addressing access access to medical care is critical to screening because it is a process not a test screening process has multiple steps as shown in figure two and the steps are managed in clinical trials but not necessarily in usual practice in the united states to achieve the full potential of screening united states we must consider how to improve the entire process we must also consider the effects of the process on all the women even those who will not get cancer some have argued that healthy people should be very skeptical of screening because most people will not have cancer even with a positive test improving the screening process means finding better tests and better diagnostic procedures in the comparison of alternative screening and diagnostic strategies in closing i want to emphasize three points that fewer women have died of breast cancer because research has led to progress in breast cancer screening and treatment that the research provides evidence for women and their physicians to choose wisely among options they say but it is their behavior that changes care and three that we have much more research to do to understand the screening process how to affect behavior to identify practicing physician and i'm professor of hematology medical oncology medicine and epidemiology at emory university on behalf of the eleven million cancer patients and survivors in america today the american cancer society thank you for your continued leadership in the fight against cancer and commitment to enacting comprehensive health care reform this year i greatly appreciate the opportunity to testify today on federal initiatives to help fight breast cancer in the united states dr taplin comments were quite wise the way breast cancer is an amazingly devastating disease it's also a very complicated disease too often we do a disservice to women who we want to help by simplifying the concepts of this disease with very simple messages sometimes simple messages that actually end up doing harm this year breast cancer will take the lives of approximately forty thousand women in the u s this is particular disheartening because we know that if every one minute access to accurate information about the disease good science driven early detection and quality and timely treatment more of them was survive this disease or members of the community today quoted a lot of american cancer society generated statistics one statistic generated by the same a c s epidemiologist i would like to quote is the fact that with half hearted approaches to breast cancer from two thousand from nine hundred ninety one in two thousand and five fifty five to sixty thousand women lives or deaths were  we have heard it fifty five to sixty thousand breast cancer deaths by really in essence half heartedly approaching this disease and not getting serious about it at a time when at least a third  and indeed in the one nine hundred ninety s perhaps fifty percent of women who shouldn't be getting screened were not getting screened and even today a substantial number of women who are screened and found within having malady get less than good treatment for the disease unfortunately not all women have access to adequate health coverage or the public health programs that have been proven to help save lives the consequences can be devastating in terms of prognosis my testimony today w highlight four priority areas there are central to improve breast cancer outcomes in the u s priority one we must ensure access to quality health care for all americans our current health care system fails to meet the needs of far too many people researches make clear that lack of health insurance can be deadly studies have documented the uninsured breast cancer patients are more likely to be diagnosed at a later stage of disease and have lower survival rates than women who are privately insure that's a polite way of saying the uninsured are more likely to die continued progress against breast cancer requires that we give all cancer patients an equal opportunity about was disease by making sure they have access to quality  timely medical care priority we need to ensure that we apply what we know about evidence based prevention early detection and make the services available to all americans breast cancer is one of the few cancers that can be detected early evidence based screening tests absent the screenings women are at risk of being diagnosed as late stages of disease when it is spread and become more difficult and more expensive to treat and chances of survival survival drop precipitously now's the time to transform our current sick care system in the one it also focuses on prevention and wellness this requires making evidence based prevention early detection services affordable and accessible to all populations ironically not doing so increases our nation's overall health care costs priorities clinical decisions must be patient centered and ma through strict rational and orthodox interpretations of the most current scientific evidence this is particularly important in the context of a serious illness like breast cancer or any cancer as protection as practitioners we need to strive to consistently do a better job of explaining the evidence and the options for screening treatment here as understandably as possible to help patients make informed decisions together with their health care teams priority for finally we must do a better job of addressing the health disparities that exist in our nation recent studies have shown differences in quality of care provided among certain populations there are particular concern for example congresswoman caster actually quoted a study that i published together with colleagues last year that show that black women with five times more likely to experience huge delays and starting breast cancer treatment compared to white women we also found that black women were significantly less likely to receive a problem we had surgery seven and a half percent of black women and one and a half percent of white women with a local early stage potentially curable breast cancer did not get breast surgery research completed by all study in one thousand all three that was not practiced in the year two thousand and six is well documented that insurance status and poverty are principal determinants in cancer disparities we simply must do a better job in providing access to appropriate early diagnosis and cancer treatment services for all women in closing it is gratifying that since one thousand nine hundred been seeing a rise in the number of women surviving breast cancer each year as i said fifty five to sixty thousand deaths of it but that success is not enough all women must have access to accurate information opportunity to testified today about the four brand breast cancer bills before your committee my name is jennifer and i am president of the susan g komen for the cure advocacy alliance and vice president of government affairs and public policy for susan g komen for the cure this year marks the twenty fifth anniversary of national breast cancer awareness month it's an opportunity to reflect on what we have accomplished and to work even harder to fight the war on breast cancer forever has become the promise of millions thanks to events like the race for the cure we have invested almost one point five billion in cutting edge research and community programs and have pledged another two billion over the next decade the komen advocacy alliance the sister organization that i am proud to lead mobilize is a network of two hundred fifty thousand advocates at the national level to promote important policy change health access to health care and third to improve the quality of women and we need the help of congress that's why i'm so pleased to be here today because each of these bills before the committee helps us to move thousand under age forty five that's approximately ten percent of all breast cancer diagnosed certainly not a trivial number a carefully targeted evidence public health effort will we have had an outpouring of support from young women around the country for this bill we are working with the bill sponsor to ensure that funding for the early come from existing funds for the breast and cervical cancer program let's now turn to the breast cancer patient act h r six hundred ninety one to be truly empowered women also need the ability to impact that's why the komen has consistently supported th availability introduced by representative brings us closer to the second goal i mentioned which is expanding access to health care at komen we believe that all women should have access to recommended screening including cancer survivors who need follow up testing and surveillance guidelines recommended by the american cancer society and the national comprehensive cancer network state that women at high risk should receive annual screening mammogram and an m r i every year importantly women undergoing screening tests should do so in conjunction with their doctor when we talk about approving access to care we mean quality care for all women our third goal so we commend congresswoman caster congresswoman christianson for their attention to the issue of disparities and breast cancer low income women should have access to the same quality care that's higher income women so that they could benefit from the positive outcome improving the quality of cancer care across race and ethnicity has long been a focus of komen recently joined with the american society of clinical oncology to collect data national breast cancer awareness month we take a hard look at what we've accomplished and where we need to be the stigma surrounding breast cancer in our country is largely the envy of woman women the world over in the the the greatest utility for m r i for women who are at high risk for breast cancer such as individuals who have a strong family history for women at high risk detection of abnormalities was women who launched the national breast cancer coalition and i soon left my law practice to devote my life to our mission to eradicate breast cancer we are a coalition of organizations from across the country our board of directors is a board of twenty five of these organizations representing the diversity that is breast cancer from women of color support to new wave to the alamo breast cancer coalition to the california alliance of breast cancer organizations our national grassroots network consists of representatives of many different organizations we set priorities we educate our members to understand the language and the concepts of science we know that women are quite capable of understanding these issues of accepting the truth no matter how difficult that may be and of speaking up for themselves we critically analyze information  bills specific to breast cancer and we've submitted analyses of some of those bills to members and i will submit them for the record but what i want to focus my marks on today is our number one priority and that is the bill that we believe will have the largest impact for all women at risk of all women who have received a diagnosis of breast cancer and that is guaranteed access to quality health care for all we followed our process of research of critical analysis we spent several years educating our grassroots looking at various healthcare systems reading the literature researching the system and we developed our framework which was  with our written testimony to support guarantee access for all educated patient participation at all levels of the system shared responsibility and benefits based on evidence we strongly support comparative effectiveness research because we believe that it is necessary to help ensure quality and affordable health care for all we need a high level of evidence for doctors and patients which care is appropriate for whom and under what circumstances in addition our framework calls for a significant number and that's twenty five percent of educated patients and consumer members on all committees commissions and boards involved in health care including those established to review and assess the best evidence based treatment we commend the committee for its work on thirty two hundred many of the benchmarks set forth in our framework and we were pleased to endorse that bill and we look forward to working with you to ensure that all individuals have access to the comprehensive quality care they deserve quality care they need everyone should have access and it must be affordable not just for the federal budget but it must be affordable to individuals we very much appreciate your interest and support our shared goal to save lives and to how careful we all have to be to make certain that what we are doing is the right thing in terms of women's lives there are too many unfortunate examples of policy messaging and believe that have taken hold when there i know firsthand the hard and i see that har over and over again to many women of all ages all races all walks of life that is why we are so firmly unbelievable activist she was the executive vice president of the national breast cancer coalition she founded new wave a national support group for women hispanic women with breast cancer she was diagnosed treatment for breast cancer just one more story of how complex this disease is how complicated the issues are i dedicate my testimony and my work to her memory and i thank you again thousand and seven the national cancer institute invested nearly six hundred million dollars in breast cancer research and devoted roughly the same amount of resources towards research on this topic in two thousand and eight can you describe dr caplan the activities that supporting understand how women can actually prevent prevent breast cancer in the first place and how is that investing in research into improved breast cancer screening as well as in treatment of breast cancer once it's been diagnosed in less than two minutes whatever you can do there are there many studies related breast cancer you've already noted we had five hundred seventy two basic relationship between environment biology of young women's breast development and so there are biologic studies and women there's empathy and epidemiology study and in young women there's also a group of people looking academic academicians and educators looking at how you communicate these issues to women and to young women especially so that we can begin to adapt those messages to the population that we're targeting those are those are some of the areas where we're going to tank you examinations for women in their twenty's or thirty's so unless a woman under forty has an identified risk factor there's no recommendation that she get a mammogram obviously you know this relates to  right legislation would you elaborate on you know that the challenges for women under forty and what can be what can we do for these women to detect their cancers as early as yes or thank you for the question part of the answer to your question is magreb is a terrible test for women who have a younger brother and a terrible test for two reasons number one it's very difficult for the radiologist to actually make an interpretation of that x ray because of the breast density and number two radiation does cause some cancers and causes cancers in younger breasts that are more practitioner or a physician perhaps doing a mammogram is appropriate in that one particular individual if you have someone who is a very high risk perhaps the mammogram is appropriate perhaps an m r i has to do believe there are many patients with medical information is a good practice as long as the message is of course well crafted and well delivered you have any concerns that this demographic well in formal help a little bit too much fear may be harmful and we don't really know where the balance is between those two things and we don't know what enough about messaging from my standpoint to know what the answer is to the question you're posing that's part of why we're  part of the american cancer society's early concern about this bill was that it wasn't clear who was going to create the messages that were going to be conveyed to the population now that it's very clear that a committee of scientists appointed by the director of will be those that craft the messages that we feel very comfortable with educating the population because we have some we have some assurances that the messages will be created by experts so yes i'm agreeing with you and i think that the messages that would be conveyed through the early act would be messages that would be scientifically valid you are correct that the messaging to individuals be they you or be they people in your fifty's is sort of like a t one line the more health messages that you put forth you diminish all the other health messages the currently the early act as i see it allows for messages about diet health messages about exercise and nutrition and actually maybe more when a breast health act much more a health act because it's going to if the messages are received appropriately it's going to prevent diabetes and heart thank you congresswoman and we appreciate your leadership as well i'd like to take a minute just to talk briefly about our partnership with the metropolitan chicago breast cancer task force because i think it's a partnership that will give us the data  african americans is even worse than in the rest of the country african american women in chicago have a sixty eight percent higher mortality rate than white women do and the task force that we are involved in and a margraf physical where is it how do you get an economic can they afford it but then they have to make sure that it's of poor quality and we as providers and advocates need to make sure that that that mammography is of of high quality and then they have an adequate access to treatment and then you have to ask the same questions about their treatment is the treatment that they're getting at the same level of evidence and the same level of quality that higher i think likely the likelihood i don't have a study that i can quote for you but i can tell you as someone who has practiced medicine the likelihood is that it can be a couple of different reasons and what we're talking about here is  follow up exams after treatment to see if the disease is coming back the sometimes the physicians simply forget which is unfortunate up on the part of the physicians sometimes the patients are advised to get the testing as prescribed and they don't go and get the test sometimes and this is the more common problem there's an affordability problem called pays and other things that people are just unable to come up with even if insured and i'm actually much more concerned very frequently about the insured individual who doesn't have very good insurance then even uninsured individual because quite a few dollar simply can't afford to continue co pays over time so they don't get those ther thank you gentleman from ohio thank you mr chairman before i begin if i could ask unanimous consent to enter into the right testimony from lifetime network as for the panel thank you very very much for your testimony and it's hard to hear without thinking about the people that we have known in our lives who have suffered from breast cancer lost who are  marrow transplant would be beneficial for women at high risk for relapse of breast cancer many hospitals started out transplant programs as a way of making money ten state legislatures passed law s insurance companies had to pay for them many women their insurance companies because they didn't want to pay for it there was no scientific evidence to support it all too much delayed the n c i studies  having on health care in the same conference and one of the things we can't ignore is sometimes the political implications of important public policy decisions we're making that involve academic research scientific research medical research and the person who developed that treatment methodology was sitting in these witness chair and turned with his back to members of congress and had all those women stand up and then the members sitting in this hearing room fifty percent of these women will be dead if you don't approve funding for this treatment so we're really talking about a high stakes poker game here and i think what all of us want to get to is a health care delivery system that is based upon evidence based decision making that makes sense for the greatest portion of the population i had the opportunity before i came to congress to represent a retired who was diagnosed with prostate cancer and the treatment of choice that he decided upon was not covered by blue cross blue shield through an employer sponsored health care plan and after a lot of research and investigation we determined that blue cross blue shield was  administrator for medicare in the state of iowa and covered that form of treatment as not experimental so when we're talking about making health care available to women who've been diagnosed with breast cancer we all need to know the best evidence available and we also need to eliminate these bizarre distinctions between coverage options so that no woman who has a breast cancer who's been diagnosed with breast cancer is faced with a difficult decision  how she's going to pay for treatment under one program that she could get if she was old enough to be covered under medicare or something else and so one of the things i'd like to ask the panel about is why this particular class of women younger women who do not fit what traditional who is most likely to be diagnosed with breast cancer why are they more vulnerable than other segments of the population could start first thank you to believe that adequate health care reform included to raise warming how we consume health care we have to all learn to be more scientific and appreciate the science and the evidence one aspect of the early bill which i think is important it actually puts aside some money to address the very questions that you just addressed what's different about younger women how can we help younger women who have this disease that's actually the most some of the most important parts of the early bill the a c s had some difficulty with the bill early on because some of the messages that were in there were not messages that we thought we could support wanted evidence based good messages you know we have scientists and survivors committee coming up with what the  are some data that younger women are more likely to be diagnosed with triple negative breast cancer because of the type of breast cancer which we have treatments for estrogen receptor positive breast cancer that work well we have treatments for her to ever expressing breast cancer that works well for triple negative we don't yet have targeted therapies that work well so more research into looking at that type of breast cancer although there are a number of new  allow us to have that the ability to drill down and define criteria that would be more age appropriate for different segments of the population so i can only give my opinion as a physician who treats breast cancer patients i think the agencies which does the staging man always done a good job although it is actually being reevaluated right now as we speak i think one of the great problems we have in breast cancer is our definition of what cancer is actually comes from some german pathologists in the eighteen forty and we have not actually brought cancer the definition of cancer into a molecular or genetic age we're still using the same science looking at it under a microscope with a glass to say this is cancer that we used one hundred sixty years ago and one of the challenges to us in science is to find the genetic way to look at a tissue and say that this particular tissue in this woman's breast is going to behave in this particular way over the next twenty thirty forty years and that's how we  it this particular tissue is going to be very aggressive so we need to treat it aggressively this other woman's breast cancer is going to be less aggressive so we'll treat it maybe even watch it and be less aggressive w gotten there but that's where hopefully the science is going to take us that's hopefully where the sequencing of the human genome is going to take us and maybe twenty years from now we'll be talking about those tests the whole family thank you very much thank you all i know it's been a long day we had to have votes and all that but i thank you for bearing with us and this was very enlightening in terms of the whole issue as i said earlier we this was a legislative hearing so we're going to have to sift through all this and figure out what's in the health care reform and what isn't and what we do intend to try to move the bills that  were considered today and let me just mention that members can still submit written questions to you they're supposed to submit them within ten days and then the clerk notifies you to respond in writing to some additional