the meeting of the subcommittee is called to order today we're having a hearing on two bills h r levon fifty seven the breast cancer and environmental research act of two thousand and seven and h r seven fifty eight the breast cancer patient protection act of two thousand and seven recognized myself initially for an opening statement these bills obviously are very important according to the centers for disease control and prevention of the c d c breast cancer is the second most common form of cancer in women each year in america approximately one hundred eighty two thousand women are diagnosed with breast cancer of which nearly forty one thousand lose their lives undoubtedly many of us know some of these women there are mothers our grandmothers wives sisters daughters coworkers and friends families across the country are confronted with this terrible disease every day in fact breast cancer has hit close to home for me and my family after my mother in law was recently diagnosed with the disease so i can personally attest to the struggle these families have to face and as a son a husband and the father of two girls i want to ensure that we're doing everything we can to beat back this terrible disease while improved access to screening and treatment services have helped reduce breast cancer death rates over the past couple of decades significant challenges still remain for example still for example we're still unsure about what causes breast cancer or how to prevent it while there have been a number of studies that have looked at various risk factors we have not been able to draw any solid conclusions about what specifically causes breast cancer h r eleven fifty seven the breast cancer and environmental research act of two thousand and seven introduced by congresswoman nita lowey is intended to address the need for more research in the hopes of discovering the causes possible preventative measures and one day a cure let me also acknowledge the work of my colleagues on the committee mr katz and ms myrick who have also been tireless advocates on behalf of this legislation h r eleven fifty seven would authorize the research program at the national institutes of health to study the potential links between breast cancer and the environment specifically the bill would authorize the national institutes of environmental health sciences to award grants for the development and operation of centers for the purpose of conducting research on environmental factors that may be related to breast cancer this bill has strong bipartisan support two hundred sixty eight members of the house of co sponsor of the bill including a majority of the members on this committee a number of organizations have also endorsed h r eleven fifty seven and called upon congress to implement a broad research strategy  outlined in the legislation clearly this bill is a priority for many people and i'm looking forward to hearing testimony from a few of them today in addition h r levon fifty seven we will also hear testimony on h r seven fifty eight the cancer patent patient protection act of two thousand and seven introduced by my good friend and colleague from connecticut congresswoman de lauro h r seven fifty eight would require that health plans provide coverage for minimum hospital stays for consultations when a patient requests one presently twenty one states have implemented minimum stay requirements to varying degrees as a result some people may question why this legislation is necessary but this bill is not for the women who live in states or have insurance policies that provide these protections is for the women who do not for these women a federal remedy is their only hope having access to appropriate medical care should not be dependent on the state that you live in once again i want to thank my colleagues who have worked so hard on both of these bills i assure you that not only congressman de lauro congresswoman de lauro and congresswoman lowey but many other members have been pushing me i guess the best to say over the last few months to bring up these bills and a hearing it's really because of their efforts and the efforts of the people that they represent that we are here today and i also want to thank our witnesses for being here today we look forward to hearing from your testimony and now recognize the ranking member mr deal mr chairman the diagnosis of breast cancer is certainly a devastating blow to anyone and also to the sons the daughters and the husbands of a mother or wife who is faced with this life threatening disease you've mentioned your family i have three daughters as well and four granddaughters and certainly have a personal interest in this matter fortunately great strides have really been made in the treatment of breast cancer and as a result the number of breast cancer survivors continues to increase however we must learn more about the causes and the treatments of this disease through continued research already the national institutes of health devote considerable resources to breast cancer research and evaluating the environmental causes of this disease as we pursue new treatments for all diseases it is important for us to always be considering the causes for the disease that we're trying to treat by knowing the causes we can do more to prevent disease rather than simply treating it these efforts  prevention will save lives but to get to that point we must be learning more about the triggers of the disease while the on going efforts of the n i to research breast cancer so that we continue to make lifesaving advancements i signed on as co sponsor of h r levin fifty seven to show my support because i believe it's important for us to continue research into the causes of breast cancer i also strongly supported efforts last congress to fundamentally reform the n i which i believe was a vital step in improving research into all diseases it's all too easy i'm afraid for the political process to interfere with research funding questions which should be guided by science and medicine my hope is that the n h s been better able to and find ways to further improve the research efforts at age i want to thank our distinguished witnesses for their attendance today and i look forward to hearing not only about the work being done it in a joan breast cancer but also hearing suggestion from our other witnesses about how those efforts and i could be made made more effective and mr chairman it conclusion i have a letter from the georgia cancer coalition outlining a project that they have undertaken as it relates to coordinating of information about holding this hearing on two important bills dealing with breast cancer issues which have broad bipartisan support in fact both bills have a majority of the house of representatives as co sponsors of the legislation i think it's important that we hold these this hearing and move these bills forward breast cancer kills so many people strikes so many it's a tragedy and what's so troubling is that we are learning more and more about environmental causes of breast cancer we don't know the cause of breast cancer we're trying to figure out how to treat the disease but wouldn't it be great if we could stop the disease and prevent it and we can't figure out how to do that and that's we can see if there is an environmental cause for breast cancer itself the there's only been limited research on environmental factors and in many cases the studies have raised rather than settle these important questions so it's critical that we do all i all we can to understand the links between the environment and cancer obviously we need to do more research to do that the breast cancer and environmental research act would establish a peer review program it and i h to fund collaborative research across institutions across disciplines and with community organizations to study the environmental factors that may cause breast cancer i hope that we can reach a consensus to move these bills right away they should have been an act into law in the last congress it was unfortunate that the bills this particular bill did not go through i want to address one additional critical point some will say it is not the business of the congress to tell the n i m h what their research priorities should be and i say nonsense of course we shouldn't micromanage the work it in i h or that we should make scientific judgments or select specific projects but it is our business to establish broad priorities if we had not taken that role in the past we would not have seen the tremendous progress in age of research we would not have changed the policies to ensure that women were involved in clinical trials and we would not have been able to push for addressing racial disparities in health care it is appropriate that we establish a priority for examination of environmental effects breast cancer and that's why this bill is so important as two hundred sixty eight of our colleagues as co sponsors more than enough to pass the house i look forward to the hearing from witnesses today and working with all of my colleagues to get this job thank you mr waxman next for an opening statement the gentleman from pennsylvania mr murphy thank you mr chairman i'm particularly interested in this hearing today to gather some information not only because the importance of continuing on with research and expanded understanding breast cancer but like so many people in this room you know and it's also touched my life with sisters who have suffered from breast cancer and what i want to know is what else we can do to prevent it what else we can do to treatment to t reat it and make sure that is an acute illness and preventable illness i also want to make sure that as we review the bills in front of us today that we are getting important information on what decisions doctors and patients need to make in hospitals when i was the state senator i was the author of pennsylvania's patient rights law and in so doing there was many times we thought it was important review procedures that insurance companies had to make sure that decisions could be made by physicians and patients in cooperation making important decisions about their care and that decisions are not just made on a financial basis of saying how long and what patient should have his treatment i'm hoping today to also gather information on this with regard to patient stays making sure we're not staying away of medical decisions of what is in the best interest of the patients treatment and quite frankly sometimes the best interest of the patients mental health in terms of statement chair mr green the gentleman from texas thank you mr chairman for holding a hearing on these two very important pieces of breast cancer legislation has a co sponsor both bills i'm pleased that we're moving them through the committee process breast cancer second most common cancer among women in us from one nine hundred seventy three to one nine hundred ninety eight breast cancer incidence rates increased by more than forty percent today a woman lifetime risk of breast cancer is one in eight the national ca while some research is being conducted by the national cancer institute and the d o d in these areas we still have not discovered why some people get breast cancer and others do not the breast cancer and environmental research act of two thousand and seven allow the national institute of environmental health science to make grants available for the development and operation of research centers for civically designed to study the link between environmental factors in breast cancer some people would get breast cancer due to increased genetic risk however others who have no genetic predisposition for breast cancer with this piece of legislation or allow for research to be conducted to possibly uncover the link between environmental factors and breast cancer breast cancer patient protection act of two thousand seven require group health insurance priors to provide coverage for no less than forty eight hours of hospital care to msec to be patients texas already has a state mandate requiring minimum length of stays following the breast cancer surgery but it's only one of twenty states have this protection for cancer patients patients who have mastectomies or at risk of developing infections and need medical care from a trained medical professional following their surgery both these bill should have passed years ago and i'm pleased that we're having this legislative hearing today mr chairman i yield back my time thank you next is the gentleman from texas mr burgess for an opening statement thank mr chairman and i'll be brief because i make just to get on to our witnesses we all recognize that medical research scientific research is lengthy and tedious and expensive many years of training for the young scientist who wants to spend a lifetime in research and they have spent a long years before even beginning a career of research which adds to the expense for certain non governmental sources such as corporations and philanthropic organizations there's a great deal of money that they put forward but the expense is too much for the private sector to bear alone and we are fortunate to have a national inst health which is truly a national treasure to really get the ball rolling on a lot of the very basic research that's likely would not be borne by the private sector and it's by partnering these elements the federal government does its best work and helps us motivate the innovations and keep the edge in technology and knowledge that really makes america the envy of the world i am a believer that scientific research is important i'm not necessarily believer that and i do take part company with a little bit with what chairman waxman says about us being in charge of making the decisions about the direction of the research true enough broad priority should be set by bod such as this committee such as this but we also gave the and i h broad powers with their translational research in december of two thousand six and we're barely past that reauthorization bill and i do think we need to give  doctors or who need and the scientists a nationalist of healthy the freedom to explore where that translational research will will take them oftentimes i find myself in some difficulty because i don't know that i always know how to tell the american family how to budget their expenses i don't know how to always tell the generals how to fight the battles and i think we all need to be careful about being those micro managers that chairman waxman said we should not be and trying to direct at a micro level the and i each and fit other federal research in to ts and telling them what to study and when to study this is well intentioned legislation the end of the day i may will vote for it but i am grateful to have this hearing as a learning exercise again i am concerned about prescribing a specific way of conducting federal research and the unintended consequences we live in a time used to be running to the consequences might not happen for a generation now they happen in a matter of months so we do need to be careful about the unintended consequences the n h s established for centers of excellence for breast cancer environmental research that's a good thing nearly three quarters of a billion dollars a devoted to the research of breast cancer in environmental factors the n i to reform act was devised it's to give the n h more authority to conduct multidisciplinary research and establish priorities that were previously dominated by more political talk and not scientific action in my twenty five year medical career i treated thousands thousands of patients and breast cancer was a daily specter over my over my practice it is certainly visited me and my family in a personal way as well i understand the importance of getting the upper hand on this disease but i also think we need to acknowledge that the night is already doing good work and we must be careful that what we do today doesn't further strained their ability to do the correct kind of research value back to balance my time thank you mr burgess next for an opening statement the gentlewoman from california thank you mr chairman and thank you for holding this very important hearing to discuss two very important bills that will help millions of women and families affected by breast cancer i have been a proud supporter of both of these pieces of legislation for many years and i am very pleased that finally the subcommittee is moving to address the breast cancer issue in a comprehensive way you know it's estimated that about one hundred eighty thousand women will be diagnosed this year with breast cancer and for women of color particularly minority women latinas breast cancer is often diagnosed later with fewer treatment options resulting in increased risk of death only thirty percent of latinas over the age of forty have regular mammograms and even though latinos have lower rates of breast cancer than wider african american women breast cancer continues to be the leading cause of death for latinos h r eleven fifty seven the breast cancer environmental research act would provide important research on the links between our communities environment and its impact on breast cancer risk i've long advocated for increased awareness for the inherent links between our environment and our health in los angeles county for example poor air quality and pollution have incredibly damaging effects on everyone is specially our children who develop asthma we owe it to the millions of american women who fought this terrible disease to comprehensively study how our environment may have contributed to their breast cancer this research we know could provide promising prevention strategies so that future generations of women are not impacted by breast cancer the second bill that will be discussing today the breast cancer patient protection act is long overdue the fisa legislation will provide basic standards health insurers most adhered to for breast cancer cancer patients twenty states including mine in california have already enacted minimum length of state requirements for breast cancer surgeries which is a key provision in r seven fifty eight both h r seven fifty eight and h r eleven fifty seven are important bills that grassroots activists from across the country have worked tirelessly to champion for many many years i look forward to hearing the testimony from our witnesses yield back the balance of my time thank you next is the gentlewoman from tennessee ms blackburn thank you mr chairman i thank you for the hearing i want to welcome our witnesses and i want to welcome the young women that i am seeing here in the hearing room today for this hearing i'm a co sponsor of h r eleven fifty seven the breast cancer environmental research act also conde co sponsored this in the hundred ninth session of congress and when i was in the state senate in tennessee this is an issue that i started working on then and have continued to follow one of the interesting things is that one in every three cancers are diagnosed in women  breast cancer and the way this affects us in tennessee in two thousand and six we had forty four hundred new breast cancer cases and the lives of one thousand tennesseans were claimed at that year and the impact of the environmental conditions is something that that has not been lost on us and that we're continuing to follow so i appreciate that legislation all in all tennessee is home to some stellar cancer research we have the university of tennessee cancer institute we have the vanderbilt ingrim cancer institute which is dedicated to breast cancer research we also have one that i know our witness and mike stitcher went whom i whelk i'm miss crowe thank you for being here i know she has been involved as i have been very supportive of the mini parole breast cancer center at medical center in in nashville and i thank you for that support and i thank you for all you do to bring awareness to the issue the tennessee breast cancer coalition continues to work towards eradication of the disease through both education and advocacy on the state and national level in fact the coalition has raised over one point two million dollars since ninety five and donates one hundred percent of those funds to efforts within the state of tennessee we are serious about this issue that we've had some talk this morning about the end and their responsibility it is our responsibility to continue to fund the i do think however the and i rather than congress should set those research priorities we're going to talk more about that but mr chairman i opening statement the gentlewoman from oregon ms who'd thank you mr chair as i prepared for this very day i went back to my files to refresh my memory on the various bills and letters i have signed on to in support of breast cancer research and funding i found a draft letter written in two thousand and responds to constituents asking for my support for the breast cancer environmental research act in the one hundred sixth congress which i'm proud to say i did co sponsor in part mr chairman the letter references july two thousand article in the new when journal of medicine reporting on a new study showing that environmental factors are more important than gene factors in causing many types of cancer s study reported that on average environmental factors cause about forty says many cancers as inborn genetic factors the study also stated that researchers aren't sure which environmental factors are cancer causing which clearly shows a need for research in this area the breast cancer environmental research act of two thousand and seven of which i am proud to be a co sponsor is as relevant today as it was eight plus years ago letter i referred to was written eight and a half years ago i understand that in the greater scheme of things here in congress eight years maybe hardly any time at all however not to the people who have been diagnosed with cancer since that time one point five million people have been diagnosed with breast cancer and the american public shouldn't have to wait in the longer for action on this issue i could make a similar statement about the need to act on the breast cancer patient protection act of two thousand and seven in oregon we passed a minimum standard for mastectomy patients i think it's only fair to give folks that are not fortunate enough to live in the great state of oregon similar care and treatment mr terry yield back the remainder of my time look forward to asking questions of the witness and i think we need to get on with the business and not wait any longer for this thank you thank you next is the gentlewoman from north thank you mr chairman thank you for calling the hearing and i appreciate it and for all of our witnesses are going to testify and of course i'm delighted dr lilias here from north carolina we always like to have north carolina people here but this is really important hearing and i appreciate the fact that we've got the opportunity they and all of you are here to do this i've been really close sponsor on the breast cancer environmental research act for several years because of course i like every other person basically including man not just women believe it's critical to examine those potential environmental triggers that cause breast cancer incidence and of course has already been mentioned i too am very troubled by the growing number of the young women who are diagnos aggressive often deadly forms of breast cancer and i believe that dedicated medical research is the most effective way to figure out why this happens is a strong support of and i preform in the end i farm act on her stand the importance of encouraging the efficient effective research and i congressional restraint in the disease specific realms important because none of us ones don't intentionally limit the effectiveness of any cross institution or research by being too prescriptive with legislation and not letting science drive the research or danda and i was pleased to see the compromise language on the bill emerge from the senate health committee earlier this year because i believe that this revised language improves the advocacy of the bill and appropriately reflects the intent of its supporters to assist in improved scientific research on breast cancers environmental links i'm also support of the breast cancer patient protection act to limit instances when women are forced to leave the hospital shortly after mastectomy  course was supported by my dear friend jo ann davis who tragically says succumbed to the disease last year will still miss her a lot the state in our carolina has passed legislation as other states have already mentioned to require a minimum hospital stay for which applies to health plans under the state's tourist diction this bill would extend the requirement to rescind plans and group individual plans within its jurisdiction of the public health service act and naturally this requirement does not apply if a medical decision  sending a a good home will not hamper her recovery i again thank the chairman for holding this hearing and i look forward to hearing from our witnesses in as a best cancer survivor myself why always this has extra importance to because fortunately i'm still here thank you all for being here and i hope that my time thank you and thank you in particular for all that you've done to bring attention to the issue and they've talked to me many times and i appreciate that  for an opening statement our next member is the gentlewoman from wisconsin ms baldwin thank you mr chairman and i very much appreciate your holding this hearing today and our witnesses for joining us i am  like a number of my colleagues proud to be a co sponsor of both h r eleven fifty seven which make six to move us closer to identifying and understanding the causes of breast cancer and h r seven fifty eight which seeks to ensure that breast cancer patients receive adequate care i was delighted last year to partner with my colleague representative my recoupe he just heard speak in authorizing the reauthorization of the national breast and cervical cancer early detection program and it was great to work with you mr chairman and many other members of this subcommittee and the full committee in passing that important reauthorization i know that many of my colleagues on this subcommittee share my commitment to strengthening the federal role in fighting breast cancer and i'm glad that we're continuing that commitment by considering the two bills that we have before us today mr chairman unfortunately nearly all of us are touched by breast cancer in some form either as a patient a daughter a friend sister a brother a son a father a mother of somebody who has been diagnosed with breast cancer the national cancer institute estimates this year alone some nearly two hundred thousand women and men will be diagnosed with breast cancer and they also estimate that over forty thousand women and nearly five hundred men will die as a result of breast cancer i view these bills as important steps that cover both ends of the spectrum in the case of h r eleven fifty seven we are strengthening the commitment that our nation's health researchers are making to discover the cause of breast cancer and the environmental factors that play a role in the disease and once we discover the cause then we can work to improve prevention and treatment of breast cancer in the case of r seven fifty eight we are strengthening patient protections to ensure that breast cancer patients are receiving appropriate medical care we are also ensuring that medical treatment decisions are being made by a patient and  doctor and not by the insurance companies while i'm glad that a number of states have already enacted state level reforms to ensure minimum length of stay requirements for breast cancer surgery i note that my home state of wisconsin is not one of those states so establishing a federal standard was certainly benefit the people that i represent in the state of wisconsin again mr chairman i'm a strong and enthusiastic supporter of both of the bills before us today and i'm looking forward to today's discussion thank you thank you mr baldwin next is the ranking member of our full committee the gentleman from texas mr barton thank you mr chairman thank you for the here and i want to start out by thanking the susan g komen brest foundation for their tireless dedication to breast cancer research i have been associated with the leaders of that organization for a number of years and i'm very proud of the work they've done i want to say something about this specific bill we've been talking a lot in this congress about earmarks mostly in the appropriation bills but they're earmarks they can pop up in other places too in the bill that's before saddam is one of those bills it's a disease specific bill for earmark research at the national institute of hell for more than a decade congress in this committee on a bipartisan basis has been trying to make a decision based decisions on both policy we have tried to fund each of the major institutes and centers and compromise and i ate with a single appropriation line item i had my staff look and we can't find one instance in the last five or six years where the appropriators of the house of representatives funded a research project to benefit one specific disease disease specific year marks are bad policy they're bad for science and we shouldn't do it having said that every year there are literally dozens of bills that are filed in this committee that designate disease specific research activities and i will say that all these disease specific research activities are positive that they're noble they need to be done so it's not the issue whether we should be doing in this case breast cancer research or not the issue is how do we instruct the national institutes of health to use the research dollars that we appropriate for the best possible good for them all americans if a patient advocacy group is looking for more attention for a specific disease it seeks out a member to sponsor a bill who does it with the noblest of intentions signs of co sponsors and who can be against breast cancer research and pushes forward i understand it that's good politics member that's introducing the bill are members and i know it's always helpful to show interest in a specific disease and it's definitely good for the association that's pushing that particular bill however as i said earlier it's not good science and it's counterproductive in my opinion for congress to politically micromanage the national institute of health in the last congress on a bipartisan basis we made a major effort to reform and improve the national institutes of health it was one of the top priorities of my chairmanship and the bill that i am most proud of in the twenty four years that i've been in the congress is the national institute of health reform bill which passed in the last congress we held dozens of hearings we consulted with every major scientific society we sat down with all the major research universities in medical college we talked all the institute directors it in i h we talked to the director of the himself we moved heaven and earth to put together consensus package and we passed it the breast cancer an environment research bill that we're discussing today is a bill that's been in the last several congresses it always has several hundred co sponsors in the top co sponsors are very very good people and good personal friends of mine this bill would require that and i age to coordinate research activities between the cancer institute in the environmental health institute that makes since the problem is it's already be done we'll need the bill before us today to make that happen in addition in the n h reform bill that is now the law of the land we have set up a common fund that any any investigator that wants to work across the silos at the united states can form a coalition with other investigators in other institutes and apply for research grants through this common fund and the common son has been funded by the appropriators so again the problem that this bill is addressing has already been addressed i could go on and on mr chairman but my time is about to be about to expire let me simply say this it is good public policy for members of this committee and this congress to be interested in disease in research to find cures all the various diseases whether it be breast cancer alzheimer's parkinson's disease is you know you name it but we should try to have a policy where we fund research put priorities on certain research and then let the under this new reform package that we just passed find the best way to allocate the available resources i hope that we don't go back to the way we  business where whichever advocacy group has the most political clout in in a specific congress they get their research funded at the top of the list that is not the way in my opinion to do health but a scientific research for having this hearing on the bales thank you to our witnesses i see a real honor roll great advocates sitting in the rows looking up at us and i hope that you'll respect what comes out of this a s you're sitting there i want to thank our colleague sue myrick because she has been steely and gentle at the same time and has inspired a lot of us and i want to salute her for the work that she's done i paid special attention to what the ranking member of the full committee just said i've worked with joe barton for years we like each other we've trusted each other and it's  i think he outlined where the committee is and what we've kind of honored in all of these things but joe i want to say to you that life is not tidy this is really more a competition for dollars than it is for anything else and so that's how that i think that whole architecture has been set down about specific diseases and specific disease bills and whatever i for one think that this committee should just break through all of that and say as the united great as the united states is we can be greater and we're going to declare war on all of these diseases we have the capability the capacity to do this we just haven't set forward the political will to fund these things and so we have the dio defunding breast cancer research you know why we have that there because that's where the money is and that congressman murtha took that call up years ago and so we're here today with two good bills i don't think they deliver the world on this issue but in terms of the research it is very important just in this last week for my friends actually two of my friends were diagnosed with stage d and each one of their daughters was diagnosed with stage two that's in one week's time so there is work to be done here this is a serious as it comes women men their families can't go to macy's they can't go to name in marcus to get their problem solved on this they come to us they come to us the least we can do is to put these bills on the  books they're important bills but they're not the end all so let's do ourselves proud by doing the right thing but understanding understanding that isn't to main said we have miles to go and places to see and i hope all of my colleagues will consider breaking out of the pack and saying let's declare war on a whole list of diseases and set the resources there set the resources to the task there isn't anything that our researchers and our scientists in this country can't do if we're willing to fund it so thank you for starting out with this i'm proud to co sponsor them i look forward to the people that are going to testify and i'm especially proud of the advocates in the breast cancer coalition advocates that i never tire of knocking on our doors thank you mr chairman thank you mrs issue i'd like to request that the statement of our full committee chairman mr dingell be inserted into the record without objection so ordered and i next member for an opening statement as the gentleman from arizona mr mr shafiq thank you mr chairman and i want to thank you for holding this hearing i want to compliment my friend sue myrick for her tireless advocacy of the cause of breast cancer and dealing with the issue i hadn't intended to make a lengthy opening statement but just to insert my opening remarks but i think in light of the discussion we're having i'd like to deliver my perspective my life has been touched directly by breast answer my oldest sister who when i was young and before i was married was my best friend is now a twenty plus year breast cancer survivor and i thank god for that every day she remains a very close friend in addition i think in prior hearings many of you heard me tell the story of my son who in his young education needed to bring assistance he had a tutor that was with him for years and years  grew phenomenally close to her and tragically her life was taken by breast cancer there are valid marriage to both of the arguments we have just heard mr barton's argument that the political allocation of research funds has  drawbacks to it it means that those with the greatest political power can get that legislation passed and perhaps that's not how we ought to allocate resources at the same time miss lloyd a great point my colleague on the other side of the great job of articulating that sometimes it's appropriate to rise above that what i'd like to say is something that people don't understand because it's a civics lesson and that is often it is appropriate to introduce a bill and all the hearing on a bill whether that bill becomes law or not the american people need to understand the importance of going after and allocating research dollars to go after breast cancer and whether we enact these bills as they're written or amend them and change them or whether we remain with the current policy where an eye decides the allocation of these resources this hearing is appropriate bringing these knowledgeable people forward reminding the american people of the need for research dollars in this area making people aware of the dire consequences of cancer on so many lives  numbers show one in eight american women will be a victim of breast cancer in their lives i think there is no amount of attention that you could pay to this issue that would be too great i simply want to say that i applaud  again my friend sue myrick for her tireless advocacy and all of the advocates of this legislation we need to continue to focus on this fight is vitally important i know that we need to find a cure and if we ignore it if we don't look at it if we don't examine it we won't get there i want to conclude with one last point when i first got here to congress h m o s i believed were abusing people rather dramatically they were failing to pay for services that people need they were denying carriage coverage not based on medical reasons but based on money and so i became a champion of patient advocacy legislation sadly we never pass that legislation but i believe just the legislative hearings and the pressure congress put by looking at that legislation put pressure on the h m o industry to quit denying people care for reasons other than legitimately they didn't need to care rather than just to get rich off of their premiums and i think this given the youth in the same way i believe it is important to hold these hearings and a focus on these issues and to debate them and resolve whether or not we need to fund this particular legislation at this level or sauber level or follow the course that joe is talking about but i compliment you mr chairman on all involved thank you next for an opening i want to come in the gentleman from north carolina for work and they say that i was agree with the fact that it might not be a total solution but i think that it is moving in the right direction and i support both h r eleven forty fifty seven and also h r seven five eight sponsor of both the bills and the reason that i'm a sponsor of both is that the fact that my situation is that i come from a family of four mother father and a brother all of them died from cancer and to listen to some of the comments being made on the other side it bothers me because i think that we cannot sit back and not do everything that we can do to find a cure and let me just sort of pause and say that i want to extend my best wishes to a true health care advocate the animals senator ted kennedy who has been fighting this battle for more than forty years i wan extend my best to his him into his family during this very difficult period i look forward to hearing from the witnesses because i think that there's so much that we can learn from the witnesses and of course  process out we move forward open mind that we really really understand how important it is to put the resources were ever to be able to come up with a cure so i want to thank the witnesses for coming and sharing and i want to thank the members for being here to listen and i hope that through this process that we will be able to fund the research do whatever is needed to be able to come up with a cure and i like to sociate myself with remarks made from the gentleman from california yes we are piecemealing but when you of frustrated and you know that something needs to be done you're prepared to do whatever you can do at the time that you can do it i agree with her i think that we should fun all of them and to be in a position to do i think we can do it but the point of the matter is is that do we have the will is not a priority and that once we make it a priority then i think we can come up with  solution so i would say to you mr chairman i think that you're doing the right thing by having a dialogue and that hope out of this dialogue will come a solution thank you so much for having this hearing thank towns next to for an opening statement the gentleman from michigan mr rogers thank you mr chairman for having the committee it is a twenty four year cancer survivor myself i certainly understand the impact that the disease has on families across the country i couldn't imagine that there aren't many people in america whose lives who have not been touched by a cancer in any way when it comes to breast cancer we've seen the lives of grandmothers and mothers daughters wives and friends all torn apart by the deadly disease including my sister in law but we also have witnessed tremendous stories of courage and importantly victory over cancer i remember when i first ran in one thousand nine hundred four the folks were saying whatever you do don't tell people you survived cancer we have come a very long way because so many people with courage had stood up and said yes we can beat this disease and yes we can continue on with long and productive lives finding a cure for cancer is a national priority last year alone the federal government spent over five point six billion dollars on cancer research in fact last year the nantz national cancer institute spent over five hundred million on breast cancer research alone along with support for this research i have been working on issues impacting cancer care and treatment matter fact in two thousand and five a good friend of mine an issue from california and i co founded the cancer care working group here in congress to educate members and staff about exciting new developments and challenges facing oncology it's my hope that through a strong federal commitment to cancer research we'll soon find cures that will offer new hope to millions of people throughout the world i hope this can committee and we hope this serves as an opportunity for us to address some concerns with h r eleven fifty seven just as the senate health committee has done in order to ensure that breast answer research dollars are spent on actual research not overhead not administration or duplicative efforts again thank you mr chairman for holding this hearing today and i look forward to working with you on this important issue as we move forward thank you next i recognize the gentleman from utah mr matheson for an opening statement thank you mr chairman i am the co sponsor of h r eleven fifty seven as my colleague has stated this bill would invest the research still necessary to determine the potential links between breast cancer in the environment so that we can cure it and eventually eradicate this terrible disease our best weapon against cancer is research every day the headlines reveal new information that cancer patients their families and their doctors can use in their battle against this disease the national investment in cancer research has yielded and will continue to yield substantial returns in terms of lives saved and suffering less and through their research the scientists are making advances in the cause of diagnosis and treatment of cancer and on the front lines in the quest for prevention and cure in my state of utah nearly a thousand people will be diagnosed with breast cancer this year and it's anticipated over two hundred will die from this disease i'm continually saddened by the fact that a woman the united states has a one in seven chance of developing a base of breast cancer during her lifetime this risk is one in eleven in  eighty five breast cancer remains the second leading cause of cancer death among women secondly the lung cancer i'm committed to continue fighting for increase research into the pent ten shillings to the environment and breast cancer and i have joined many of my colleagues on this committee encouraging increased funding for and i each because we don't know what causes breast cancer i look forward to hearing from the panel of experts on this bill and ways that this committee could should tackle the question of how our environment may affect breast cancer mr chairman i yield back my time thank you and next is the gentlewoman from california miss capps thank her again she she is also been a tireless advocate for the environmental research bill thank you thank  chairman and particularly want to give some thanks to this morning in my opening statement thank you first of all for holding this hearing i fully believe that this hearing is long overdue and welcomed and needs to lead passage of legislation it's not just shop place for discussion today and saying that i give most praise to our tireless advocate who are here yet again on the topic of breast cancer  as an as it is an epidemic in our country today with the numbers of one in eight women there's that's astounding when you think of the number of women who have had cancer or will expect to be diagnosed with cancer during their lifetimes and all of the people who will be affected by that i want to single out our celebrity sheryl crow because you're not coming today as a as a celebrity as much as a survivor and you don't give just token status to this i've watched you here on the hill time and time again advocating also around the country and putting a face a human life to this topic and ways that are very appreciated appreciated by women around the country as well and the  many other advocates i want to speak on behalf of the caucus for women's issues in the house of representatives seventy four of us strong strongly supporting these two pieces of legislation determined that these will will pass and be chair along with me and our friend deborah pryce and steve israel of the cancer caucus and this is a high priority for this caucus as well we have we have also the opportunity now to have this hearing on the breast cancer patient protection act and i just want to say that i came to congress as a spouse over eleven years ago and one of the first things i heard about was the so called drive by mastectomy that this famous person i hadn't met yet rosa de lauro was working tirelessly to eliminate that possibility that some of the insurers were making it so difficult for someone to go through a horrendous operation surgery and then be be sent off back home again so quickly and i think it's very very important to acknowledge and perhaps others have already that along with rosa de lauro the co author of this legislation in this congress is our dear departed a colleague joanne davis and and it's it's with great determination that we need to pass this bill in her memory so i and when i yield back and look forward very much to the testimony of our our witnesses today thank you and next for an opening statement the gentlewoman from illinois you mr chairman this is a great way for us to relate to close this legislative work period before returning home for to our districts for a week as you've heard everybody's got a personal story i was proud when i was in the state legislature that we were able to pass legislation that stop these drive through mastectomies and in in illinois give women a period of time to get the care that they need in the hospital in several states have actually actually done that and i have been with women talk with women who are shuffled out of the hospital before they felt ready to to to go and  unfortunately too many women experience those kinds of things because their insurance companies don't do what's really needed and an appropriate and so i'm so glad we're going to be taking making progress on h r seven fifty eight today and i also want to express my thanks to congresswoman rosa de lauro for her tireless work on this and i want to thank the co sponsors of the breast cancer and environmental research act a jar eleven fifty seven congresswoman nita lowey and sue  and i'm proud to be of one of the co sponsors of that bill we know far too little about what crosses breast cancer but without a doubt we know that it affects far too many of our mothers and daughters and sisters and friends and this bill will take a huge step toward learning more about the at the ology of breast cancer by stablish ing a research panel encouraging multiple multi disciplinary and multi institutional research on the environmental factors that may be related to breast cancer and authorizing appropriations for these purposes i'm particularly interested in finding ways to learn more about the relationship between chemical exposures from everyday products and the occurrence of breast cancer i look forward to hearing our witness from the dr when i believe we'll discuss this area of research i believe this is something that we can do in the united states of america with the kind of expertise that that we have that we can actually provide answers to some of these health care challenges and i look forward as a member of congress to be part of that effort to make it happen sooner rather than than later thank everyone your official credentials here you're the associate director this is dr deborah women who is associate director of the epidemiology and genetic research program at the national cancer institute in says you know the you know the the ritual here we have a five minute opening statement becomes part of the record but we may as committee members submitted to tional brief pertinent statements or writing an issue to get back to us later in writing so i now recognize you're welcome again and thank you for being here i think dr when it's you know i bring that my closer and make sure it's on my head to bring it closer i don't know seems to be something wrong is the light on maybe just bring it closer ok ok that's about that sorry i specifically oversee research seeking to identify environmental and genetic factors involved in the e of breast cancer which h r eleven fifty seven is intended to address we have and i each believe that the current public health service act provides sufficient authority to address this area of research as well as others as science advances through discovery it increasingly converge is we know that the answers to the most vexing scientific questions involving one disease often comes from areas of unrelated research as scientists we know that it would be a mistake to focus on one disease without understanding the underlying biological mechanisms defect multiple diseases and this is one of the great lessons that we're learning from some of the recent advances and you know mix and molecular biology in general prescribing a specific way of conducting federal research could have the unintended consequences of narrowing the field of inquiry and promoting an unwise use of precious resources this morning i'd like to share with you information about our progress in understanding the role of the environment in the development of breast cancer  research activities that i described were planned and carried out using our existing authorities as you've noted it's estimated that approximately one hundred eighty thousand women will be diagnosed with breast cancer i certainly know about this having been one of them diagnosed with breast cancer at age forty two known risk factors include increasing age family history reproductive history obesity heavy alcohol intake and hormone replacement therapies we know less about possible environmental causes of breast cancer but we recognize that breast cancer is a complex disease caused by multiple interacting factors including genes hormones and environmental exposures that interact across the lifespan and ma pathways with other diseases and i estimate that it will fund about one hundred seven hundred five million dollars in breast cancer research in fiscal year two thousand and seven almost two hundred one hundred million focusing specifically on the role of the environment in breast cancer despite the substantial investment well conducted studies of adult women have revealed little in the way of finding possible environmental causes one new approaches to study windows of susceptibility these are the prime of events over the lifespan where exposures to environmental factors can directly or indirectly affect a person's risk of developing breast cancer this approach stems from the knowledge that there are specific windows of time and physiological changes in the minimally memory gland that may be important and narrowing in on these time periods could be very important in our understanding to uncover the links between early environmental exposures and cancer risk in c i partnered with the national institute of environmental health sciences in two thousand and three fund got together to fund for breast cancer in the environment research centers we call these b circs these peace or acts are specifically focusing on exposures during early  during puberty because they're important windows of susceptibility for breast cancer the centers are headquartered at four sites across the u s but each center is a consortium and has many research partners to be circs were designed to include breast cancer advocates as foundational parts of each center and as formal members of various steering committees in an advisory committee each center includes basic scientists clinicians population scientists and advocates they conduct research into the role of the environment breast cancer by using both animal models and studies in human populations the animal models allow investigators to and examine the entire reproductive ban and breast cancer the bees are also includes a study of young girls going through puberty to look at environmental psychosocial dietary and other determinants of breast development my written testimony includes details about a number of other research efforts we have in the area of breast cancer in the environment in conclusion and i it's funds research that takes a diverse approach to studying breast cancer in the anbar environment this approach includes specifying identifying specific chemicals which change the structure and function of the mammary gland brusquely and during different windows is the ability understanding gene environment interactions in the ideology of breast cancer and other associated physiological milestones that are associated with breast cancer risks such as breast density in addition our research is focused on identifying common pathways across a number of different types of cancers while more research is needed with continued collaboration's of scientists advocates and institutes were well quipped to continue to support enhanced this area of breast cancer in the vironment research and i'd like to thank you for the opportunity to testify today and welcome any questions thank you dr wayne and thank you for all that you and your colleagues do it and we're going to have questions now and with myself for questions in your in your testimony you talk about a lot of the research that is already ongoing it and i are being funded by extramural research grants the proponents of this legislation as you know believe that the research strategy outlined in the bill before us will help supplement research or efforts currently underway do you think that the provisions of this bill will help build upon current research efforts and lead to a better understanding of the linkages between the environment and breast cancer and basically why or why not well  it's already has the existing authorities to pursue this area of research and through the breast cancer in the environment research centers as well as the many opportunities for example through the common fund through the genes in the environment initiative we have other ample opportunities to study breast cancer in the environment well how does the research strategy outlined in the bill compare or contrast from the efforts currently underway tonight to are being funded through and through extramural gr extra the bill would allow hundred fifty seven includes a panel that would direct the the funding of the research as well as having a very specific disease focus our general pro choice and i  that has worked very well for us is through our existing peer review system that is really a considered to be a gold standard across the world for its fairness and its focus on scientific merit also our approach and i agree with respect to breast cancer in the environment takes a number of different routes through for example use of the common fund the use of various mechanisms use of workshops that include i understand that our colleagues in the senate made some changes to the legislation when the help committee marked up its version can you explain the concerns that any age has with with the house bill and tell me if the changes that the senate made adequately addressed your concerns or are there any other changes and i would like to see made well certainly from the scientific perspective the issue regarding the funding panel as well as the single disease focus our concerns that we have that because because it circumvents the existing peer review system and because a single disease focus would can actually constrain us in terms of the research that we can do in our ability to let the science direct the research agenda specifically regarding this senate bill the senate bill as amended is not opposed by and i however the administration doesn't have a position on the additional other than the basic concern that you would like to see addressed here i think i'll defer to my colleagues  this is the changes in the senate bill are very satisfactory to the national institutes of health ok let me ask you one more question and then we'll move on when you tell you testified that advocates play an active role in the governance of the breast cancer and environment research centers and its formal members i guess are former members of various steering committees and in an advisory working group can you please explain why you believe it's important for advocates to play an active management and oversight some of them include our ability to help recruit and retain the young girls and their families who are part of the epidemiologic study they also have a credibly large role in developing materials that try and explain what it is that we do know about breast cancer in the environment they can use be used both with the study participants and their families as well as the broader communities each of the advocacy groups that are part of the breast cancer the environment research centers are local to that particular center and so are very well aware of the different issues that differ between california ohio michigan and new york city areas where the where young girls are located ok thank you very much mr do understand that you currently work with outside advocacy groups and determining the direction of the research that and i was conducting is that correct yes that's true but could you give us an idea the reform act this collaboration of information across institute aligns works in terms of perhaps advancing the calls of dealing with this specific area of  breast cancer well i can give you one example which is the genes in the environment initiative and that's a trans and i h effort that comes from the common fund one one major part of that  in very middle exposure area we're really way behind in terms of our ability to manage to monitor individuals environmental exposures and in the development of biomarkers that would indicate environmental exposure early damage and one of the particular projects that is being supported under that is looking at biomarkers for estrogen like compounds in biological fluids that could be used as a future biomarker for example so that's one area where the common fund is directly impacted the breast cancer and the environment issues as i read your testimony one of the concerns that you expressed is that if we try to statutorily be to specific i iting what you must do or should do that we run the risk of having unintended consequences is that general summarization one of your concerns is yes yes for so for example with this bill we're this too to pass we would have to fund it by given the current fiscal environment we would have to redirect funds from some other particular research area that's what is typically happens with a  disease specific requirement and i believe i have the figures right that you currently spend about seven hundred five million breast cancer research is that about right yes how does woman from california ms issue in other countries today to study the link between environmental factors and breast cancer yes in fact the national cancer institute through the intermural program is funding what is called the polish breast cancer case control study that is  focusing on like many studies of breast cancer are many factors but included in that is occupational exposures we sometimes like to look at occupational exposure is because people tend to have greater exposures and it allows us to look at  potential environmental factors so that's an instance where we are using that specific special opportunity to focus on environmental factors how big a sex daddy is whole and my understanding is that several thousand women with and without breast cancer i can find out more information about numbers and other countries certainly we have with respect to environment and breast cancer and i think that there of studies and in china that are cohort studies that involve tens of thousands of people that have some environmental components to them usually they're focused on multiple factors and those are the two that come to mind are there many more is that widespread is it small would we be in the lead by doing this would we be the lead in breast cancer in the environment research  much more common in able certain types of research more than others well i'm particularly interested in the neck this between environmental factors and breast cancer because that's what one of the bills direct itself toward are women in other countries do you know getting breast cancer at the same rate as in the united states the one in eight figure the one in eight probably certainly it's can be very high in many parts of the world more likely in more developed countries than in less developed countries in general and can you speak to the enthusiasm that you have for these for these bills or do you recommend any additions or subtractions or tweaking you're an have authorities in this area that would allow us to pursue these areas we are of course from a scientific perspective concerned about the peer review in the single disease focus in the senate bill is not opposed by why are you concerned about that we're concerned about the peer review system because the peer review system is set up to be is a gold standard with respect to its overall fairness its overall focus on scientific merit it's sort of a very finely tuned instrument for that purpose and the comparable safeguards with respect to the panel that's proposed would not ensure that same level of review process has worked very well for her and what was your other concern the other concern is the single disease focus and the boxing us in it with respect to the parameters of the research that could be undertak well it seems to me though that this is one of the biggest question marks relative to breast cancer i mean women in the bay area where i come from have much higher rates there have been  you know i mean when i think of all of the women and their families that run and walk and we sponsor them in the dollars from selling cupcakes to go into research this seems to me to be an area that we need to really be pouring some efforts into so i'm i'm more attracted to to you know to a bolder statement we're going to take this on and not be so tied to you know if if we had succeeded with what you just stated i'd say hey we've won we've already discovered we've made the breakthroughs a man let's move on to something else but i don't think we have so i don't understand why you would be sensually driving with an emergency brak and be kind of hankie about the research that specific and the nexus between the environment and breast cancer but that's my observation so now you can't really respond because i'm twenty nine seconds over time next for questions is the ranking member mr barton thank you mr chairman let me let me start out putting a few things on the record i did in my in a statement i have an aunt that dad had breast cancer and i have a sister that's a breast cancer survivor fifteen years also have a brother that died of liver cancer the father the dad complications from a heart operation caused by diabetes and my mother is an early stage alzheimer s victim my problem with this bill is not that we shouldn't do all we can do to combat breast cancer my problem with the bill is that once again we look like we're going down the path of of picking winners and losers and who gets the most research you know where does that leave liver cancer breast cancer bone cancer leukemia lung cancer skin cancer brain cancer prostate cancer pancreatic cancer what about what about parkinson's what about autism what about diabetes so that's my problem let me ask you doctor right now in the national cancer institute we have four centers of excellence for breast cancer research is that correct yes we we have yes we have for breast cancer in the environment research centers okayed do we also in the environmental in the national institute of environmental sciences which is a separate institute from national cancer institute the national institute of environmental sciences have centers of excellence for environmental research and if so how many  well first of all i'd like to ask if if the chair mr chairman would permit my asking my colleague glenn coleman from the national institute for environmental health sciences to join me at the table let me introduc coleman from the as national institute of environmental health sciences chief of disease susceptibility and population well thank you very much for the opportunity answer the question directly has twenty five centers of excellence in environmental health sciences stupid across the country many of them are actively involved in research on breast cancer and environment but of course the field of environmental health sciences  quite broad based support research in basic science toxicology exposure assessment and human studies related to a host of environmental exposures as causes of a variety of different diseases now the bill before us would require the creation of colab or to multi institutional centers of breast cancer and environmental research in addition to what we already have in the opinion of you both of your expert witnesses is that directive in the pending legislation necessary or helpful well we already have breast cancer in the environment research centers that fall within what you described in that they are trans disciplinary multicenter geographic distributed as i understand the pending bill it would require the creation of additional multi institutional centers and my question is since we have twenty five centers of excellence for environmental research in the four centers of excellence for breast cancer research are there are those currently collaborating and cooperating and is it necessary to create these additional sooners of  so my personal opinion on this is that there are lots of different mechanisms available to us and i h to bring small projects together with larger projects and to create consortia around issues of importance and we have tackled some of these questions using a sensor mechanism but we are concerned that we wouldn't be able to tackle these pressing problems using other mechanisms with the language in the current bill also we to routinely bring centers members together for joint meetings meetings that are focused on synergize in the science we have broad authority an ability to do that and do that all the time and i'm not correct in under the  the new common fund that's just been created and has been funded by the appropriation process if any of the scientific leaders research directors at the existing centers of excellence in your two institutes wanted to collaborate on a specific research project they could put together an application submitted to the common fund and it would be peer reviewed by experts and if it was of merit it would probably be funded is that not correct so investigators at our centers do collaborate and they have submitted applications that leverage the resources that we've given them in the original projects an example is the study that dr when mentioned before in our genes environmental health initiative where two three collaborators from different centers in our breast cancer survival research centers submitted an application to the genes environment and health initiative and was funded through the common fund to develop new markers of exposure to enter can disrupt and chemical we do we can find studies collaborative right now both from institute funds and other ways so this is part of the authorities and i h already have where mr chairman man times expire and i think i've made my point the people like myself are not opposed to doing everything we can for breast cancer having just gone through the expert witnesses the this bill is not necessary from a scientific research project in my in my opinion thank you hume i will stay up there dr coleman i indicated it would lift its opposition to this bill if certain changes were made and that those changes were in fact made is that correct that's yes that is correct now this hearing today is on the legislation as originally introduced and not as the version that was passed by the senate help but i just want to be sure that they his position would remain neutral if the house were to accept the senate's changes and w to get you on record as to your statement about that yes that is correct in oftentimes in a conference committee or in perhaps even in the house this is a possibility that we would have to accept the language in the senate particularly knowing that it would be something that you would not object to and so you are now on record as saying that is that is something the house wishes to do that that the n h would not oppose it or would remain neutral on that topic that's correct and it would not impose a thank you doctor when you also testified that advocates play an active role in the governance of the breast cancer and environmental research centers as formal members of various steering committees and as an advisory working group now i would you explain for us please and i know you've referenced this but to get it specifically on the record why you believe it is important for advocates to play an active role and i believe that your phrase active role with respect to these issues i believe that it's important they play an active role what's again because of their closeness to the ground and to the community they have been particularly one example of how valuable that they have been with respect to this particular project the breast cancer environment research centers is that they have been critical in developing together with the scientists the list of chemicals that we're actually going to look for so they've specifically listen to their communities to identify what chemicals might be a greatest concern and that list combined with lists that we are creating based on what what may be found in animal models what is what hypothetically and with theoretically might be the most important chemicals to create the list of chemicals so that that's one example they're also very critical in the recruitment and retention of the young girls in communicating with the communities and for working with us on our annual scientific conference that includes a wide range of advocates we also are fortunate in having support from the avon foundation that is contributing to the circus as well and their their support has been really important to us so even though they are not necessarily scientists these are advocates and many of them are breast cancer survivors or loved ones of those who have not made big survived they are very much mighty powerful forces  communities i know but that you are able even to use their data collection in a fairly scientific way to help identify possibilities and in the kinds of ways that research will go on i want to ask one final question of you because it's come up are ready today among many of the opening statements we hear from critics of h r eleven fifty seven that the legislation is too disease specific but isn't it true that research on any cancer can often lead to progress in all cancers and in fact is and research in many other fields in cancer sometimes applicable to cancer cures or cancer treatments that may be beneficial well yes that's true that with one disease it could inform another but also what we're finding is that there's a lot of convergence of our understanding about diseases so not so much that one we learn from one about another but that we're learning something about all of them that suggest pathways and the best example i think i can give for that is the very recent findings in two thousand and seven from genome wide association studies that look at hundreds of thousands of places along the genome and when you compare thousands of women with breast cancer and thousands of women without we find a certain area that actually is of the same area that's been found for prostate and colon cancer so we're looking forward to finding out more about that and how environmental lifestyle behavioral dietary factors may influence all of those cancers by looking at them together so you would agree that this is not a question but a summary mr chairman that even though this legislation is modeled to study the effects of environmental factors on the etiology of breast cancer the structure that it puts in place has the potential to yield results relevant to all cancers and perhaps even other diseases and could be used for that that could be a  offshoot certainly is not directly intended to focus on that understood thank you very much that thank you the gentleman from north carolina ms mark well in the interest of time i want to hear the other witnesses and i would just simply like to ask the chairman's formation to put the letter from the komen foundation that you have a copy of into the record and then i'll wait for the second pass without objection so ordered and thank you is the gentlewoman from illinois michigan house q dr when in your testimony you mentioned than avesta gators are looking at so called windows of susceptibility which are considered prime events over the life span where exposures to environmental factors can directly or indirectly affect a person's risk of developing breast cancer this approach is you explain recognizes that there are specific windows of time that physiological changes to the memory or mammary gland occur including just station puberty progs pregnancy and lactation i'm very interested in this because knowing what we do about early puberty and the risk of breast cancer first menstruation before age twelve apparently raises the cancer risk by fifty percent i think we most certainly need to be examining the causes of the falling age of puberty and you touched on the recent stories we've all seen about the plast a and its possible stocks on female development i wondered if you'd expand on these comments and include for example where b p a is found in the environment and if ongoing studies find a negative association between b p and female health and i just has supported research on b p a under another number of different ways not only in our breast cancer environment research centers but i think over the last decade or so information has come out that low levels of this chemical which are commonly found in the environment in plastic so plastic the bottles plastic water bottles plastics that are used to store foods all have been using b p a to make it strong and make it hard softer plastics do not have higher levels of b p a water bottles i mean you know we all drink water and carry more of that has b p a right so some of the the more rigid water bottles have higher levels of b p a than the ones that have are more pliable so the low doses of those have been implicated now to show toxicity in the mammary gland and well as well as the prostate gland and so that's why several review committees that are associated with an i h s have reviewed the evidence recently and have now have concern about that particular chemical in our products so in the breast cancer survivor research centers program investigators have been looking at the mammary glands in the animal models and looking at exposure during pregnancy of the animals looking at the mammary gland changes during puberty and are finding areas that are concerned about we've also done some pilot work measuring b p a in the blood in the  of the girls that are in our study and we do find detectable levels of b p a in these girls and that there are some other data from c d c that also suggests that b p a levels in urine are quite ubiquitous and are in the human population so we're just starting to try to pull all of this together to understand whether the exposures that we're finding in our bodies aren't necessarily related to factors of what makes because somebody have a higher level of b p a versus a lower level and then does that change the time window for when breast development first occurs does it effect the age at menstruation because we believe that if you extend that window of estrogen in a city in a young girl that all the way through her adult years she may be at higher risk of breast cancer later and of course that's the biggest concern that we have we are we at the point yet of discouraging this ubiquitous water bottle among young girls so it turns out that several companies who have been using b p a in their products have voluntarily taken them out and so now there will be more choices to the consumer for these products that will not have levels of b p a and how will we know chemicals and therefore associated with increasing such susceptibility to breast cancer you cite a list of forty such chemicals that are memory gland carcinogens and possibly  chemicals found in our environment do they have common names how prevalent are they there's quite a wide range of chemicals that have these print these properties on the various components of our home own systems and interact with them in animal models and we are and i h s is conducting research to understand the distribution and prevalence of those chemicals in human populations as well there are products in consumer products the e that the chemicals falaise have been found in products that have fragrances things like shampoos and soaps there are carcinogens on that list including benzene which of course are found in gasoline that are been shown to be carcinogens in the animal models systems that the national toxicology program uses to classify carcinogens my time has expired thank you very much thank you gentleman from arizona m chairman fascinating testimony and i think that highlights how it is useful to do this kind of a hearing and for us to learn over those of us who can't concert all of our time on this issue dr win i just want to walk through a clear understanding of the progress of this legislation on the senate side as i understand it as that bill went to committee on the senate side there were discussions between and i and the proponents of the bill about the structure of the bill and particularly about the fact that it was disease specific and very prescriptive in what would occur under the legislation is introduced is that correct yes that is correct and as a result of those discussions a number of amendments were agreed to to make it less prescriptive yes that's correct but it still remains disease specific it still remains disease specific do you know if the house sponsors of the bill were consulted in those occasions sometimes the senate includes us and sometimes they choose not to include us know they were not have those kinds of discussions going on here on the house side they have not ok i might encourage you as this legislation progresses to have those discussions because we all know that senators are very smart but sometimes we think we're equals in the process and myrick might want to have a discussion with you about the changes that were agreed to the senate amendment process you might have different ideas about the amendments that might be agreed to be too great disease specific legislation i presume there are disease specific bills introduced on thousands or at least dozens of different diseases every year here in congress yes there are and your concern about this bill being disease specific would apply to all of those bills as well yes it yes it would because the passage of one bill would require that we reprogram funds from some other research area or disease condition to the one that's called upon by the bill so as a general policy matter and and i would say it had concerns about any disease for civic bill yes that's correct and those are the kinds of concerns that were aired in discussion in the senate side and i take it has had that position through the years republican administration democrat administration  republican congress democrat congress correct mr barton made a passionate plea for not enacting disease specific legislation and for following the requirements h reform act many of us as an obligation to represent our constituents have a duty to listen to them and to be concerned about their concerns one of the questions i've had about this and this this whole topic of disease specific legislation relating t i have been around since i got elected in one thousand nine hundred four as you might recall of one of our former speakers wanted to double the funding year after year after year that was his goal and he did that how would someone concerned about this issue breast cancer or someone concerned about alzheimer's or any other topic express their concern to you and i h and to its policy makers and is there an avenue for open public input and is that a factor that would consider as opposed to just talking to scientific direction yes there are often calls in there and i it's guide that request information from the public you know is there would say something in the order of then i was very interested in this area what do you think and we often get public input from that respect we also often as staff members get input get get calls from the public and try and respond to those issues with respect to being able to follow the progress of all that something like the scientific management review board that it was established in the reform act in two thousand and six gives the public a way of finding out exactly where the money went very much for testimony it's been very helpful and i would encourage you to talk with ms myrick and the other sponsors of this legislation and at least have them better understand how the bill was modified by the senate amendments maybe they're willing to go with those maybe they have different ideas that might add to that discussion thank you very representative on the panel well it's my understanding that the panel would be making decisions about who would get funded so that if that you could not get funded without the approval of the panel h now based on the resources available versus where you might be on a certain disease well normally staff has a very important role to play for something in the breast cancer an environment research centers were on the steering committee for this effort and obligate funding with no direct cord nation and i kind of scratch my head thinking is that you know i think believer in this in this research and other cancer research obviously and it's never for me the you know we shouldn't be mad at the dollar that isn't spent as much as we should be mad at the dollar that is misspent and we are appropriate a lot of taxpayer dollars and i want every dollar we can possibly get on the bench and some research or spending valuable time doing that versus and the other effort we might have and i'm a little concerned as i look at this that we may be creating more of a tree more of a problem for you than we are a solution for you when it comes to trying to solve this what i think is a critically important problem normally what happens in  that each institute has an advisory committee that's composed of experts in their particular field of endeavor who provide an oversight to projects that are proposed and projects that are being refunded and evaluating evaluating those and that has been that so what you're what the bill eleven fifty seven provides is very singular exception to the entire process and not only that this is a singular exception and disease mess because sometimes we may pay to russian like the calvary and solve the problem i believe burnett but this kind of takes it out of the just what is a we all have been pretty hard on you in the last few years not you personally but and i about coordinating your efforts getting taking waste out of the system getting dollars to the bench and i as i look at this and i'm not the side where i'm going on this ship but it seems to me as the more i understand it the more i think maybe it's creating another level of a problem for you versus trying to solve a problem for you and i just want to make sure i 'm understanding that correct and we tell me skin you just talk real briefly about some of the things you have been doing to do better coordination on all disease research projects and what you have been doing to kind of streamline your efforts so that less money is wasted more money is put on the bench for research well i think at the highest levels of as well as at the institute levels trans disciplinary efforts are encouraged and sharing and partnerships are encouraged so for example the national institute of environmental health sciences n n c i have any number of programs where we're sharing either the funding for particular projects we're sharing responsibility for the development of initiatives  the the way that the common fund is being spent through the roadmap initiatives provide extensive input from all of the institutes into the development of what the areas of science that are going to be focused on and also how the if in the area is is deemed to be a high priority how that money is spent so that's a at a trans and age level that that happens how long have you been involved with and i h medical research obviously you've spent a lot of time intel and energy becoming a doctor but well between being at the centers for disease control and prevention in the national institutes of health twenty eight years so you've really committed your life to trying to find solutions for diseases you've tried to find cures for twenty eight years of your of your life is that fair looking on the prevention side yes and so there is no disease i could bring to you that you wouldn't be anxious to stay awake at night trying to solve is that correct and if i understand it correctly i don't want to put words in your mouth but you're a little concerned that this effort may make what you have spent twenty eight years trying to accomplish a little bit more difficult not because you don't care but maybe just maybe this is not the best way to do it maybe we can find another good way to do what i think the author's intent is that there is that a fair assessment that our particular focus is on balancing the the broad range of conditions and diseases that influence that effect the burden of disease in the human in the u s population well i'll join mr shadegg i hope that maybe you can sit down with the house members and we can maybe find a solution here that works for everybody and importantly doesn't work for us in this room but works for the researchers and in the scientists and the doctors who have committed their lives to trying to fix this problem and give them some value added versus maybe taking a little time away from their bench time and i  appreciate you being here thank you for your frankness today thank you mr rogers i think we're done with our questions for dr when the doctor called him and thank you very much and we look forward to working with you on this legislation as  move to mark and thank you and i'll ask the second palin to come forward now ok i want to welcome our second panel let me introduce each of the individuals from my left is ms fran vis go who is president of the national breast cancer coalition next is michelle crow who is a famous singer and songwriter and a breast cancer advocate from nashville tennessee and again thank you for being such an advocate i know you visited my office and many of the others in order to try to get this hearing today and move this bill and we appreciate center in durham now north carolina i mean i think you probably probably heard what i said before they each have a five minute opening statement they become part of the record and we may submit additional statements in writing  or additional questions for you that you would respond back to later but for now we'll begin and we'll start with an opening statement from i think you had to turn that on or move it closer thank you chairman bill and ranking member deal the members of the subcommittee for holding this hearing want to thank nita lowey of course the lead sponsor of the legislation for her leadership over the years as well as our other lead sponsor and fellow survivor sue myrick and congresswoman lois capps i am francisco i'm a twenty year breast cancer survivor and i'm president of the national breast cancer coalition and the coalition is an umbrella of more than six hundred member organizations across the country who come together to work on public policy and breast cancer we i want to make clear at the outset before i get into my actual discussion that this legislation which i'll discuss in a few moments is not about making centers happen it's not about reprogramming funding and i it's not about vacating the peer review process which we are very strong believers in and it is also the same bill that was introduced in the senate that you have in front of you that and i h and we negotiated on and came to decisions it's not a different bill is now a different version in the senate now i was diagnosed with breast cancer in september nine hundred eighty seven my son david was fourteen months old i had no family history of the disease i had two overriding questions one what i lived to see david grow up and two why what gave me breast sir i'm happy to be here today in the first question has obviously been answered in the positive but the second it's twenty years later we didn't know then what caused my breast cancer we don't know now i've had the honor of meeting thousands of breast cancer survivors over the past years of my involvement in this movement and with the national breast cancer coalition there are millions of us more each year actually more than two hundred fifty thousand women who are diagnosed each year we have daughters granddaughters sisters friends partners and we don't know what to tell them to do to prevent breast cancer we can sit by and wait and watch and hope the scientific community finds the answers we can hope that these women do not also join our club or we can fight as hard as we can to find the answers find the cure was and end this disease as you are all very well aware the national breast cancer coalition chose the latter course we've advocated for increased funding for breast cancer research we've collaborated with researchers around the world on breast cancer we've launched unique training programs to educate ourselves so that we can understand and engage in the science and help set the agenda in the beginning of the coalition we launched our three hundred million more campaign which resulted in working with you the d o d program we made new models of research happy new collaboration's we worked on the first targeted therapy in breast cancer which has had an impact well beyond breast cancer the i report on what they're doing is exciting it happened because advocates advocated for increased funding for research we made that happen with you a lot of the research focuses on treatments on new drugs and that's very important but these drugs bring with them life changing and often life threatening toxicities incredible financial cost and result in most cases a modest impact on the disease it's extremely important that we continue that research because each year forty million forty thousand women die of breast cancer a number of the founders of n b c have died of their disease we need to better treatments and hopefully someday cures but how much better if we can prevent this disease our daughters not live in fear of getting it not face life threatening breast cancer not suffer toxicities of treatment and the incredible financial and emotional drain on them and on this country we as advocates recognize how real the complexities are i remember when i co chaired a subgroup of the national action plan on breast cancer with francis collins and he and i talked about how complex and very difficult this was and i remember his words we cannot let that be a reason not to do this we know there is no magic bullet no easy answers scientists over the years have told us and we've seen how they work in silos how there's competition whose perspective is right whose idea of what it is how can i get funded we can continue along those paths or we can take this extraordinary opportunity to harness the incredible scientific abilities across the country working with engaged advocates and community groups and complete what's been happening building on the very real advances in the resources we have put into the investments we have made in breast cancer research you've heard some from and i each of what's going on in different pockets there are other there's other work being done in this arena but there are many different approaches what we need to do is bring all of this together to work in no one institution no one institute no one approach no one individual has the answers if they did we wouldn't be here we need to work on many diseases yes that is important this is one of them we need a balance it is not enough to simply let scientists or administrators determine what they should focus on we need to build on the science we've already invested in and the knowledge that we have in breast cancer that is what this bill will do i listen carefully and read carefully and i'm very happy that the n i centers are helping in the model is one they like they are not exactly what this bill contemplates they're one small steps toward that the questions for those were chosen by and i h but you have to remember that they are doing that because of the national breast cancer coalition advocacy around this bill and our working with congress to get it in the report language and tell and i age to do that so it is a great example of why this bill before you now is important how it will work and how it must move forward so what is the bill going to do a many if you're a minute over right i'm going to and we also have votes and i'd like to at least get one more witness  so if you could summarize i just want to summarize by saying that the bill is not going to hurt the peer review process the bill is going to let collaborative grants peer reviewed collaborative grants the senate bill provides that the secretary will take into account the recommendations of the panel panel doesn't direct the world wide nationwide scientific community decides what the research questions are those questions will go through peer review it is something that builds on reauthorization it enhances the work that's being done it's a strategic approach which is what we need doesn't replicate duplicate doesn't take money away it's not intended to do that we did our homework sixteen years ago when we began advocating on behalf of breast cancer research and we are here today to say it's time to take this next step seventy senators two hundred sixty eight members of the house two thirds of the committee are sponsors of this bill and i look forward to this year when this bill becomes law thank you very much thank you mr biscoe and let me explain where we are we have sixty votes which could you know as much as forty five minutes maybe more but we have time for one more because we still have twelve minutes left so i may as miss crow to give her opening statement and then dr you'll have to wait till after if you don't mind and then we'll have questions after so we're hoping that you can all stay around but  appreciate the opportunity to test if i before you today on the breast cancer environmental research act as a breast cancer survivor and advocate i am very passionate about getting this bill enacted this year and two thousand and six i was diagnosed with breast cancer in the us is they i was absolutely devastated before my diagnosis i'd been helping raise awareness and funds for breast cancer for years concerts events whatever i could do because i knew it was an important issue so when i was diagnosed as this really hit home and i have the dubious honor because i am a singer of having a large female fan base and i have become sort of a spokesperson for the detection but as i look to my right and i see these young women over here as they embark on their adulthood and they're asking questions about whether the lipstick they're using the shampoo they're using whether they're drinking from a water bottle might be a factor in their being the one in seven with breast cancer i don't have the answers to that but i think it's a question that needs to be answered and now is the time i know awareness is not enough we need real action and so i'm joining with friends isco and the breast national breast cancer coalition because i believe and what they are doing is good for all of us about a year ago fran asked me to learn about this bill and i did and i'm not here lightly i know what this bill will do and i'm certain that it is the right approach why is this bill important to me because i know because i want to know what causes this is these for me and for two point three million others who share this diagnosis with diagnosis with me and especially for those of us who are at risk or putting themselves at risk without even knowing like the vast majority of women diagnosed with breast cancer i have no known risk you including no family history i have no idea why i got breast cancer or what i can say to others on how to prevent it but what i do know is we need more resources into figuring out what the environment has to do with breast cancer and we need to do that through the government funding because there is little financial incentive for ever for anyone else to do this research i've spent a great deal of time out talking to people about the environment obviously i've traveled throughout the country to try to raise awareness about what we are doing to the environment and what we can do to help save it and i know these issues are even more complex than that especially when it comes to so's the ations between environment and disease and i know this bill and the national breast cancer coalition includes a broad definition of environment to include not just exposures but life styles and the intersect interaction between genes and the environment inside and outside of our bodies i can tell you that the public deeply cares about the environment we're talking about every day is no longer third page stuff in the newspaper it's on the front page women are talking about on a daily basis on every talk show about how they can live healthier lives and prevent diseases we're talking about how to live grain in order to prevent disease this is a question that everyone wants answered and i will say that i understand the concerns of congressman burgess and congressman barton about this bill but this bill establishes an opportunity for setting a precedent where the environment is concerned for other diseases i would hate to think that the benefits of today's vaccinations would not be possible because the research done on finding the polio vaccination was considered a disease pacific would it not be possible that any findings in this area where the environment effects disease be finish it but officiate other diseases for instance and a in the instance of what dennis lehmann did at the revlon cancer center at u c l a where he did research on the her to positive and created a treatment that now is a targeted treatment that actually is benefiting brain cancer and other diseases and i want to say that i don't live in the political world and why this while this might be a political seem like a political discussion until you are the one in seven women diagnosed with breast cancer you will never know how not political this is now is the time we've been talking about this for a long time and thank god for senator edward kennedy who i love and adore and  idolize took this to the health committee and has been pushing this through in a been a strong advocate and i feel like that we've had so much support on this that now is the opportunity to make this happen to do the right thing and to show the american people that we are concerned about what's happening and that we're not going to let the brakes stay on as it was alluded to earlier we're going to keep driving this thing forward and i look forward to celebrating this with the good people here on capitol hill and being able to take good news back to small towns in stay so the subcommittee is now in recess for about forty five minutes the seven committee will lead reconvene i i apologize i think that was some confusion on the part of the members as to when we were going to begin again so they'll probably start coming in but i want to i want to keep going because i know you have some time constraints too center i'm a breast cancer surgeon researcher and a member and former chair of the department of defense peer review breast cancer research program integration panel and i'm grateful for the opportunity to testif today i was going to focus a lot of my comments about specific issues regarding h r one one five seven i haven't described and i can't say that i find this to be an innovative approach to address this issue of breast biomedical research clearly the engine that drives much innovation and the the place in the world that the us holds in advancing medicine and biotechnology industries the design of the proposed program is based on a model supported now by the department of defense peer reviewed breast cancer research program which actually compliments and extend model as a scientist and as a past chair of this integration panel i can tell you firsthand why this model has been so successful and how it extends the thoughtful and groundbreaking reforms that the n h has recently made  less than the institute of medicine recommended the existing structure that includes both scientific peer review and programatic review by integration panel of so called two tiered approach the integration panel of the department of defense include scientist and breast cancer advocates this panel recommends research investment strategies reviews scientific peer review results deliberates and compare scoring across the multiple panels and recommends applications to be funding as well as assisting in overall program evaluation the integration panel reviews proposals with the mission and the strategic investment strategy in mind looking that not only what proposals have scientific merit but also which proposals meet the stated goals scientific merit is always considered and weighted appropriately and this is consistent with the strength of the scientific peer review process that we heard earlier this morning it's extremely important that the ongoing programs exploring the link between cancer and the environment use innovative approaches to include all potential contributors and these include contributors outside of the national institutes of health consider  the role of the centers for disease control tumor registries maintained by the american college of answer calls of surgeons cancer program and other environmental research centers supported by the national science foundation  without broad umbrella to incorporate these research centers they may be in fact excluded for research linking cancer in the environment the panel proposed the breast cancer environmental research act would act much like the integration panel at the d o t breast cancer research program and this panel has a proven twelve year to thirteen year track record of successfully and they believe peer review research and providing insight and empowering individual investigators to develop broad based far reaching and inclusive research strategies mechanisms the mechanisms for funding would be developed and then released to the scientific community with the request for proposals and the other  here is not to determine the specific scientific question to be asked this would be allowed to be the purview of the scientists but the the idea would be to create funding mechanisms which could be populated by the best and most innovative scientific ideas moving forward again this is an exciting and innovative strategy that allows the best scientific ideas to rise to the top and allows the most potentially fruitful collaborative strategies to be engaged let me finish by just commenting about how this protest affected research on my own institution you may know duke as one of the most outstanding schools of environmental research in the united states as well outstanding medical center policies requiring cross disciplinary approaches i have been promoted by the d o d mechanisms have led investigators at the cancer center to actively meet and engage in collaboration is with the nicholas school of the environment this is the first time event even though these institutions have been in existence for a number of years environmental scientists molecular epidemiologist and basic science has worked together with breast cancer specialists to explore how environmental exposures can increase a woman's ris breast cancer and traditional forms of support would tend not to support these types of interactions one specific example is that one of the most prominent strategies to identify environmental exposures in environmental toxins is to look at  fish models of accumulation of toxins within the lip the deposits of fish and these fish in fact develop liver cancers but that the inside gained from these fish that are populating pools and rivers and streams downstream of environmental events informs us as as to what potentially could lead to the type of developmental changes the changes occurring within the the development of the breast and young women finally there's an emerging opportunity for and for science to to engage in a discovery process in which we look at the epigenome and that means the your genetic fingerprint is stable but there are changes that are occurring outside of your genes that are influenced by the environment for example we now know that in animal models the diet of the mother can influence the genetics to the genetic expression of genes and offspring and these offspring will have inherited traits like obesity and cancer susceptibility that can be passed on to their offspring you know this epigenetic imprinting again to hear to for understand or studied area thanks very much for allowing me the opportunity to present thank you doctor and thank you to all of you will now have some questions i know that you may not all be able to stay for the whole time but we'll start out and i wanted to ask mr crow a question first of all thank you for coming to meet with me and the other members because i know you're a strong advocate on this legislation you testified that the bill before us give scientists the resources and the focus to address issues pertaining to breast cancer in the environment and you stated that the bill would bring researchers together to work in collaboration with trained advocates and with community based organizations can you tell me what impact you think the legislation will have on determining the linkages between the environment and breast cancer and how that will help us develop a cure or preventative measures well obviously i think frankly probably answer that more efficiently but i would say that this bill been set up thought a very thoughtful way with the exchange of information between researchers and with the grants being peer reviewed and information being disseminated through that a lot hopefully a lot of questions will be answered i would i would have to defer to you on that i can tell you that from my perspective because i'm not a a scientist and have not been involved in actually writing the bill that what i understand of it is that it is very efficient and it will by no means tie up anybody's arms as far as what they can and can't do but that it creates opportunity for research to go forward and if i can i'd love to defer that i mean either one of you really you know what i'm trying to get  obviously is how the provisions of this bill would help us understand these linkages better than the current research efforts is this go or ms crow either one of you well chairman the this bill is meant to look at these issues in a strategic way the an i a f has devoted resources to this issue we've worked with over the past ten years we've met with and collaborated with researchers who have devoted decades of their lives to looking at this particular issue and what happens is we look at these issues in silos and to some extent in a vacuum there's a very good imper porton work going on but what isn't happening is a really broad overarching strategic approach to looking at the link between the environment and breast cancer with this bill will do is it will complement and enhance the ongoing work it an h and it will allow researchers across the country again many of whom who have devoted their lives to these issues who work in collaboration and since you admit their ideas and their questions to the end i h and looking across all of those ideas the and i each have the ability to make certain that there is going to be a strategic approach so it's complementing and enhancing and increasing scientific freedom and a strategic approach to this question and you said mrs that the annual funding for breast cancer research both private and public has remained relatively stagnant for the past fifteen years you know why that's true and do you think that the sledges i mean one of the purposes of this legislation is increase the public investment yes well we recognize that first of all this is an authorization bill this is not an appropriations bill it is not our intent that and i aged tape limited funding that they have to fund this bill it is our intent to bring the power of advocacy in working in collaboration with you to increase the appropriations to make certain that this bill has appropriation so i age can do the work so here we have a situation where you have scientists around the country who are eager to see this happen you have advocates in the political will to make it happen we have incredible sponsorship all behind looking at this issue and taking an innovative new exciting approach that will complement everything that is on going to do you want to talk about they want to do i mean my time's running out do you want to talk about the senate bill and whether you we don't like to follow the senate you know but well actually what we're doing is following the because the the bill that was marked in the committee in the senate was a result of negotiations with and i taking into account amended this to conform to yes then yes we would very much like to see that and you think that would still accomplish your goals yes we think that would retain the integrity of the approach of the legislation yes ok thank you mr rogers chairman one of the things that concerns me most about when we weigh into these issues is somebody as i said i'm a twenty four year cancer survivors that we keep partisan politics out of it because if it seeps in in any way we end up fighting about things that are ridiculous when we have people who have committed their lives to solving this problem for real people who are going through some pretty horrible events in their lives and you know there i have heard some support in my understanding as you support the senate bill as amended and yes we do ok that that's reassuring to make is i think that we'll probably if we can get close to that senate bill we're going to have very brought me broad bipartisan support for this bill and you support that while that's the minutes good to know mr chairman i hope that we put that in our calculus here as we move forward because i think the concerns are are actually legitimate concerns as i said i really don't want to take away a doctor's time doing research to fill out a form to talk about a grant that isn't quite coordinated to find out if it's duplicative is not a good use of time i don't think so i'm glad to hear you say that and can i just say grant you know it's one of those issues and in fact one of the purposes of the structure which mirrors the d o d s structure is to make certain there is an unnecessary duplication so the scientific peer review is maintains its integrity we don't have unnecessary duplications and at the same time we have a strategic approach to the problem and that is what the senate bill underscores  is not a buy partner this is a bipartisan effort and that you do support the senate version of it which is a little different from the site i don't think any members here quoting some of my good friends who had some objection to it were doing it in any other way other than somebody saying hey there there might be a better way to do this i thank you for that and mr crow i promise i want to thank you for something when i was a young army lieutenant and i had suffered cancer prior to getting in the military i had gone through all found out that you had cancer before i completed all the training by the way so i had completed the training and said we don't think you're eligible to be an officer of the united states army and after a very long process of going getting through the  notion of that's the most ridiculous thing i've ever heard and the reason that happened is because there wasn't a lot of people having the willing to have the courage and commitment to stand up and say wait a minute i am a cancer survivor i am leading a productive life  and there are a lot of great things and a lot of great days ahead in our one of the things i want to compliment the doctor for and others is we have made such strides in survivability in cancer that is we haven't found a cure necessarily yet but we have found a lot of ways to keep people alive earlier prevention catching it early treatment regiments the next generation of treatment regimens that are going to be less harmful in their side effects is already here it's all coming down the pipe i think is a very exciting time to be in research and it's an exciting time to be involved in cancer research for you doctor and so you know a lot of things you could do with your time to spend your time doing that and let people know that listen you can survive it and you can move on and you can still do great things i look forward to your next album by the way in the thank you you're welcome one of the things that the senate did and i hope i maybe get a kind of from all of you is they move back to grant process rather than create that center they want to do grants and i thought that was a pretty pretty good idea so that we don't do pay i think would be easier to get to the research did you agree with that portion of the of the senate bill that instead of having that all dedicated center with the panel funding it that they would go to a grant structure to do the research the very research that you're talking about accomplishing that was actually the intent of the legislation from the beginning it was simply using an in artful word centered to describe it but we very much that is the approach that we're interested in we're not interested in a bricks and mortar or rigid structure we're interested in the grant program that will respect scientific freedom and i would concur with that it's really you know the probably the more contemporary terms would be a social networking type of supported that allows the type of communication the not duplicative events that billy to  engage and again i think this idea that you know in the past centers have been excluded others supported only those within it and the exact opposite intent and i think the language doesn't prove that to develop a policy in which information that type of thinking will move forward gentlemens time has expired register comment from the scrum you would in your testimony you said this was the bill but you'd be as an advocate willing to get to where we're all going i would assume absolutely and i think one of the strongest arguments for that is seeing this young group of women over here and not having it they were here earlier and they're working tirelessly on behalf of this bill as well to not be able to dictate at this point why they're coming to the maturity early earlier than in the past and what kind of correlation that has to the uprising statistic in young women who are being diagnosed with a much more advanced kind of cancer that's more difficult to treat  as obvious as a person who's in the media i get all kinds of e mails about don't use this kind of lipstick don't use that kind of shampoo a lot of it's misinformation a lot of it is information that has not been investigated these young women are living with that every day with having the kind of the kind of information that i'm getting as well knowing that is going to be a factor in my getting an early diagnosis with breast cancer or any other disease and to me this bill instead of having a cannonball shooter to fly it creates a much more i think a more directed opportunity to look at breast cancer and with the hope and the knowingness that perhaps that will correlate to not just breast cancer but cancer across the board in disease duties outside of cancer as well chairman you know and a lot of people here that this bill is about research on breast cancer and the environment they may only be thinking of things like pollution of air or tainted water  things like that and i know mr crow you you elaborate a little in your opening statement that the use of the word environment can be very broad based and you mentioned lifestyle and stress as environmental issues that may clearly affect a woman's health or a person's health i'm going to start with this go and ask because i know you have some strong opinions about this as well or beliefs and ask you to start this conversation and i hope m crow will will chime in but i also just to lay out my five minute time i do want to ask dr lyerly the same question that i asked dr when and in the previous panel just to get some information on the record so please with this go well i will say quickly that we do as an organization and this lead legislation would define environment very broadly it is not just about chemical exposure it is about lifestyles about dodgin s environmental influences what's happening in our body outside our body so it really is a broad strategic broad look at the issues and the links between the environment of breast cancer sheryl did to and i would go one step further and say that as anybody who's been diagnosed know that you sort of become a student of cancer and you learn a lot more than probably what you want to know and one of the things that's really interesting with regard to the environment is in the correlation in different places such as china that never had cancer before nine hundred fifty and what is the correlation now to the two lifestyles to environmental exposures that is causing a rise in that statistic does that apply to us in america i think we work together as a complete scientific community but america is so much at the forefront of of research and we know it and we do it so well and this to me is is a great opportunity in the fact that everyone right now is concerned about the environment and as we watch it move into our personal space and affect our personal lives we know that there is a correlation we don't know what it is and it creates and insights a lot of fear and when we're talking about what kind of plastics we're drinking out i have a one year old who still drinking out of a baby bottle i want to know if later on that's going to cause some sort of some sort of cancer some sort of disease that could have been prevented so i grew fran the environment is of young women that you were referencing in an earlier comment came back in and i know that we are all impressed with the girl power big soon to be women power that it really take leadership in the areas that we're talking about today and we're  going to have plenty of material to work with the los put it that way because as much as we want to pass this legislation there's certainly more to come and and the apathy because the group can hardly wait and as i said as as i shook a few hands earlier some of them are going to be sitting back here on day two so that's a very good strategy that you're embarking upon dr lyerly i asked this question before but i want to have your take on it is well we have heard from critics of h r eleven fifty seven that the legislation is too disease specific isn't it true that research on any cancer can often lead to progress for all cancers in fact doesn't research for one condition often lead to a cure for another thank you for that that i question i think there's clear evidence that insight into how cancers are diagnosed and treated can lead to very clear advances in the treatment for other diseases one example that stands out for breast cancer specifically is the idea of top targeting the epidermal growth factor receptor type two or irby two and developing strategic therapies against this pathway was widely thought as not going to be effective was demonstrated to be highly effective in breast cancer and this has led to anti  cancers and we can imagine that insight developed in the development of therapies and insight in into why breast cancers developed could now be applied i do think breast cancer has led the way in informing collaboration forming networks for tissue acquisition for research approaches so i do think there's a like everything in life one one foot has to go first breast cancer has led the way in many examples in dancing the entire field of cancer as well as helping us understand fundamental biological principles like metabolism of cancer cells and how that metabolism can affect  weight gain or weight loss from my cardio function and so forth and so on so broad implications for the even this narrowly defined starting point thank you and interesting that you would say what you just said next to t the real leaders in this advocacy movement that have highlighted that breast cancer has shown the way in many areas and it's a lot because of the advocates and many of them are survivors i just have to give credit where credit is d and i think that the issue of whether we know best or whether the scientists and the experts it in i know best we probably lose in that only every basis and i think that's the concern we've heard press and there's this guy i understood you to say in your earlier testimony that you are supportive of the senate version of the bill and of course it does address some of the concerns that were expressed by the one of the things that causes us concern about trying to put everything back in the old silo approach is that as you probably know better than i do the non melanoma cancers and the bronc yes cancers  and lung cancer those are taking substantial number of women's lives as well and in some cases maybe even exceeding the breast cancer death so the fact that we may not all agree that everything needs to be focused in one area i think we're all saying that we need research because it does overlap does it not is what you find out in one area as you've already elaborated it really does and i think the the emphasis here is imagining a complimentary and potentially open the extension of the really elegant model for a night funding and and allowing scientists in the science to drive the opportunities forward so i think what i think that i found most comforting in the long discussions about this opportunity is to hear an openness not to look at plastics or to look at this specific toxin or specific industry but to allow the science to really drive the opportune unity but what i think is really important is that it creates an overarching strategy to move forward and it allows engagement of investigators that perhaps may not have been traditional environmental scientists to be involved and this is really where great opportunities abound having people with deep inside into computational models  nanotechnology environmental scientists that the environmental protection agency these are these are investigators that traditionally would not be engaged in a night funded research and this opportunity allows and opens up and creates the the sort of power of persuasion to get them on to the table to have those discussions so i concur with the the the sentiment that we don't want to be exclusive but we as we are beginning to start innovative models that address the fundamental problems in cancer we have to have some focus otherwise will be a mile a mile wide and an inch deep but i think you understand the concerns that some have expressed here that we don't want to on do the good we think we did in the reform model that did some of those very same things are breaking down the silos and allowing cross institutes sharing of information things that really needed to be done for very long time i think that's the concern that that you've heard expressed by a lot of people i'll conclude mr chairman with a personal reference to my daughter probably will not like this but  family has just gone through a real traumatic experience of my two and a half year old granddaughter suffering strokes and that is been one of the most traumatic situations and fortunately they live close to eggleston hospital there in atlanta she's been treated there is out of the hospital now but i understand the importance of research because currently we don't know the cause we don't know how to treat it and that is one of the most frustrating experiences anybody could have is that on certainty so all of us hope great hope for scientific research into a lot of different areas and this of course being one of the ones that all of us are pathetic within and i think you will find that we will have the support necessary to move this legislation forward personally i hope it is the model that the senate has adopted i think it does a lemonade a lot of the controversy that we would otherwise encounter do have people diagnosed to see doctors as well i want to understand we have a lot of young women here from georgetown visitation high school and behalf of myself and our towns i'd like to welcome them because i know they've worked hard on this bill through student advocacy so thank you very very much ladies for for coming and for being great advocates this of course should be bipartisan and is bipartisan but i think that i would be remiss if i didn't say that the levels of funding the administration's levels of funding for left by the wayside in kind of flattened out and and i lost more than thirteen percent of its purchasing power as a result so i think that we need to keep pushing for more funding money doesn't cure everything but it sure helps and i think we are to keep keep doing that and i was glad that people mention environmental issues because mrs capps did and i think it's very important because it's not a coincidence that that cancer is just multiplying in leaps and bounds and it was only a few short years ago so we know that the environment is certainly a major factor in this as well  like to to ask dr lilias a couple of questions dr based on your work with the d o d department defenses peer reviewed breast cancer research program can you likeness as to why you believe that that approach is the right approach for looking at the environmental causes of breast cancer and also in conjunction with that if imaging and that creates opportunities for people to apply for funds to look at cancer imaging the d o d approach is is different in that it that it really begins to allow  completely clean slate and allow the scientists to say what are the fundamental issues the most pressing issues in breast cancer research today and we will now begin to apply for funds to address those issues we also think as we've heard earlier that the many of the opportunities involve collaborative research where we don't try to have everyone replicate themselves but in fact partner develop and  relationships and leverage scientific input so we wanted to promote mechanisms that facilitated that and provided incentives for investigators to work together within their own institution but even with with with other institutions something typically not promoted by the usual structures in which deans or other center directors are are rewarded for accumulating as much as they can in their own center and so the d o t approach was how do we address this question and who are the players in the world that are need to be on the team to address that question and we're going to promote those interactions prive providing ending mechanisms and those teams would would self assemble and say we want to understand why women don't respond to two hormonal therapies or we want to understand why mammograms don't detect all breast cancers when we want to stand why triple negative breast cancer so or so lethal and that's that's the question it's not we have three investigators working on breast cancer and we want to form a center because we have three people it's one of these fundamental questions and i think that mechanism and the the intent of that mechanism requires advocacy involvement because i don't think the scientists i include myself and that population in a vacuum can can really know what are the most pressing issues and breast cancer research without really understanding what are the most pressing issues and breast cancer thank you and mr chairman before yell back i just engel and i think we're done with our questions for this panel thank you both really for for really providing some worthwhile testimony to us and i think we're well on our way to move in this legislation based on this hearing today so thank you again and i'll ask the third panel to come forward now this panel is going to focus on the second bill h r seven five eight the breast cancer patient protection act and thank you for being here let me introduce the two of you first on my left is with who is assisting clinical professor at the university of connecticut school of medicine and director of the st francis comprehensive breast health center at st francis hospital in hartford connecticut and then we have miss alva williams from jacksonville north carolina thank you for being here and probably have heard me say before that we're going to hear five minutes statements from each of you and that we may have additional questions that we would ask you to get back to us in writing and i'll start by recognizing a doctor's office thank you good afternoon all of you and thank you for those of you her here appreciate you this afternoon being here we thank you congressman for alone for bringing this information a mastectomy is one of two surgical procedures used to remove breast cancer it's a two hour operation usually under general anesthesia where all the breast is dissected off the chest wall removing most of the overlying skin sampling  adjacent arm and as you might know because i hear many of you on the committee have personally experienced a family with breast cancer or at least you might expect it's painful company by nausea many a times compound by the need for rubber tubes to drain blood from under the remaining skin it is deforming and it comes under the shroud of a woman facing a potentially life threatening disease possible chemotherapy radiation therapy and uppermost in her mind the fear of impact on her children and husband until hundred ninety six the average hospital stay for a mastectomy was two to four days for basic physical health care needs and a nine hundred ninety six exclusively patients paying for private health care insurance were suddenly being too told that they would have to leave the hospital a few hours after their mastectomy regardless of any underlying complex medical problems they might have this unilateral decision on the part of several health care insurance companies was made without any prospective clinical research showing that it was safe women as consumers earlier in the year before they know they knew they would be diagnosed with breast cancer had purchased health care insurance policies based on the reputation and the track record of what services the company provided these consumers paid for and assumed they would receive what basic care they had contracted for during the time of that contract yet in mid one nine hundred ninety six without informing the patient the insurance customer several insurance companies changed the provision of their contracts swimming with newly diagnosed cancer hood previously known other women who had stayed in the hospital two to four days after mastectomy now were shocked to be sent home within a few hours despite contracted services that they were still paying premiums for they were facing a breach of contract for services at a time when they were sorely needed imagine first being told you have breast cancer and all that conjures in your mind and you're told then you're going to lose your breast and then you're told you cannot stay more than just a few hours after surgery to be certain fighting a consumer issue would be far from the foremost in your mind government data show that women with medicare medicaid or no insurance at all were given the length of hospitalization that they needed yet women paying health care premiums were denied that there after this legislation the not mandate hospitalization but instead restores a right for a woman to choose whether she be hospitalized twenty four to forty eight hours if she needs for basic care without protective legislation women and their spouses will continue to pay double digit increasing healthcare premiums yet denied care when they need it now women who have had adverse consequences from being sent home a few hours after mastectomy questioned what had their insurance premiums or they paid for had done for them had not covered their physical needs and indeed twenty two million people who signed the lifetime t v online petition asked the very same question and show the outrage in addition many of the forty thousand women who call the breast cancer network of strength each year have echoed the concern and one hundred ninety seven twenty one states responded to the issue by passing legislation in various forms yet american women in twenty nine states and many still in the twenty one states with legislation where there's an effective law face what's been coined as a drive through mastectomy sixty five percent of one hundred twenty five thousand women having mastectomies across america today face leaving home in a few hours now remember none of us want to be in the hospital at all and i've had patients determined the morning of their surgery that they want to go home that night and yet most of those women choose to stay for twenty four hours and deed women who are ready to go home the same day who are well enough to home same day and choose to go home the same day have the right to do so and so should women who are postoperatively have physical needs requiring hospitalization have the right to receive the care that they pay for it is not a woman's issue it's a family issue in the last decade nearly a million families have had to fail to face this and their caregivers most of the time are not health care professionals but most important is hearing the voices of women who face what you heard from alpha now included in the supplement given to you are testimonies from women taken from the lifetime t v petition and i would ask you please to look at those because they're more important when i have to say but there is a common denominator pain and tractable vomiting and infection which was rarely seen when we did inpatient mastectomies emerge room visits and readmissions and i can say my twenty years of practice covering over thirty surgeons during the course of my career i have never had to see a patient in the e r shortly after their surgery or v a and met them i was also tell you that despite being immersed in this issue daily for over a decade i am still shocked at what happens outside of connecticut and just six weeks ago i was called home woman in new hampshire a woman in her fifty's partially paralyzed on blood thinners for clots who was told you have to go home a few hours after surgery now not to bore you with details but if you're paralyzed your mobility is limited to handle the drains and being on blood thinners it makes it very tricky for handling hemorrhage from the standpoint of a surgeon yet she had to fight to get one in the hospital and what this says to me is that unilaterally denying hospitalization says that each woman in this country needs to be treated individually and not as a faceless procedure i mean i think i should just summarize keisler out a minute i believe is that as do most americans that our legislators have served the consumer rights and have protection rights of american people when we bring issues to you as in the drive to delivery issue we turn to you to do that as you've done before to help american families faced with breast cancer and a way that brings no additional cost the american taxpayer and adds no burden to health care premiums because after all patients have already paid for basic care i also want to before introducing alvah i would like to also acknowledge the several young women who i've met before joining us today representing the hundred fifty members of the thin pink society it's a student run organization at georgetown visitation preparatory school who have been working diligently to raise awareness and garner support for the breast cancer patient protection act we're pleased to have you all join us for this important issue today and would like to recognize animists consent to enter into the record several statements including the one you mention from the think pink society of the georgetown visitation prep school lifetime television network statement a statement from the breast cancer network of strength a state of a statement from the sponsor of the bill congresswoman rosa de lauro and a number of letters of support from various organizations without objection those will be entered into the record and now let me ask miss williams to give us your opening statement i forgot to mention that you are actually a patient and you're here representing other patients thank you for being here thank you so much for having me it's a real pleasure to be here quite the story to tell and i'll try to tell it within five minutes i'm the mother of five children four sons and one daughter and have a wonderful husband so i'm fortunate that  but when i when ian had to have a mastectomy i found out i had to get straight from the recovery right well to add insult to injury my insurance was not accepted by a surgeon in the town we live in so we had to go to a  forty miles away and a two lane road and they were working on it to make it so it took a little over an hour each way but anyway we left early that morning i went in for outpatient surgery world war two korea and vietnam came from georgia to take care of me and my sister drive me in her car my husband brother in law were behind them and my children and the reason we did that we didn't know the shape of b n after the surgery perhaps i would have to allow on the back seat of the car and anyway we got back home everyone is worn out terrified i have to scuse me hanging from my chest wall to my needs and my sister comes it may and she says here's two pills please cite these pills i says what are the pills for she says i really don't know but the doctor said to them i said i'm not taking them do you tell me what i'm taking so she came back she said one is for pain and one is for the show and i said i'll take the month phonology out because i really was sick and she insisted on the second feel so i took it to satisfy my sister well then really got sick you see if i had been in a hospital i would have been gotten been getting this medication through my veins through pills that i ended up throwing back and it was a horrible night everyone went to bed they were worn out but me i just couldn't lay they know i was so afraid and for the first time in my life i talked to god at lie out and i promised god sees me if you would just might mean well i would do everything in my power to help one other woman to never ever have to go through what i'm going through and the  so afraid of the tubes getting them called on something i decided to put on my husband's job bottoms because they were big and roomy and i could fit the dupes down in to my pajamas and my husband is retired go back to the surgeon several days later larry had during the two just but he had not measured correctly you were to measure the drainage from each tube separately and he just combine the two but we lived through it but i ended up with a staph infection i don't know if you have the photographs of my j s they're available if you would like to see them and that caused me to be six weeks like getting m my therapy but i never lost faith in god that he would bring me through it and i've never forgotten what i promise god that night if he would help me to get well i would do everything in my power to help one other woman and i was suddenly that night and i needed someone to adopt and it was to us or o'clock in the morning i got on my computer and af am lifetime for women and u survey to lifetime survey on breast cancer and at the bottom it wanted my story which i write my story as to why i've ended that night that was who i talked to was my computer i forgot all about it it helped me six months later my phone is ringing and it was a larned from lifetime in new york so in september of zero six i made my trip to washington d c our first trip and spoke at a congressional press conference and i'm so honored to be here to speak to you today to ask you to please help us my damage is nothing can prepare my damage but i want to help it help other women your wives your daughters your cousins your nieces who ever in your life to never ever have to go through what happened and i thank you very much thank thank you ms williams a appreciate  the way you explained you know your situation and how many others would be impacted in the same way we're going to have questions now recognize myself you know i went through this i don't know how many years ago now with the drive through deliveries for babies and of course everyone i should say everyone but you know the naysayers say that we shouldn't be mandating these things you know it should be up to the insurance companies and i don't i don't agree with that obviously and i went through the situation where my son was released you know after he was born very quickly ended up going home having joined us and had to go back to the hospital again so i mean it's different circumstances but a lot of the same rationale as to why we would pass this kind of bill but let me ask doctor's office a couple questions would you agree that physician should make the decision as to when to discharge a woman after surgery based on their medical needs and not what is in the best interests of the insurance companies and is there any reason to believe a woman would want to stay in a hospital if it isn't in her best interest now i think yes the patient doctor relationship is really a very special relationship it's one on one it's face to face really can't be legislated by a faceless physician a distance away is never looked into patients eyes are understood there are circumstances the second part of your question of course nobody wants to be in the hospital and indeed for women who have resources and support and feel well aren't having pain or nausea they should have every right to go home with the supportive care they need a visiting nurse or whatever but i two patients come to mind me in the last two weeks and one is a personal trainer who is in the most robust shape i've ever seen anyone saw could have anybody would have wanted to go home the same day and she had pain significant pain and this is someone who's not a wimp by any stretch of the imagination and a patient i just operated on monday who had a thyroid operation two years ago had a a lousy roommate  awake all the i know really hated the idea of being in the hospital and needed to be in for three days for knowledge and pain so your question is right we have to individualize care whether we have no insurance private insurance medicare or medicaid the sanctity of the patient doctor relationship cannot be ignored or we're going to be nothing but machines i don't know anybody wants to stay in the hospital by the way now in connecticut you have this on the books  but obviously a lot of states have enacted laws in this area so that's why we're talking about a national bill but opponents of the bill say that the legislation is unnecessary it would raise costs what was the experience in connecticut after the protection was enacted did the course spiral out of control as a result of the state legislation and do you to your knowledge the connecticut's law cause small businesses or any other employers to drop health insurance because that's another criticism we g connecticut we can give patients individualized care and sometimes we aren't aware of what's going on around the country except for people like alvin and the lifetime t v partition no now let's think about this the average length of stay in connecticut in one thousand nine hundred six based on connecticut hospital association statistics not my personal experience with two to four days so if insurance companies are paying for four days which would cost the premiums to be a certain level this legislation is asking for one to two days as necessary so they're in fact is a quasi bing's for the insurance company number two we've looked at data about there are concerns about nosocomial infections that occur while in the hospital that's why a person should stay and there is no prospective data looking at breast cancer survey that says that women are more likely to stay have an infection if they stay one night or two nights versus not at all and indeed women are really pretty balanced in the wounds are very covered in the drain and are covered in the hospital well it's also true that if the doctor says surely even you want to leave you still would be able to absolute will but the issue of infection i think we really need to address with them with as we're seeing a hospital you get an infection i have to reiterate that in my experience and twenty years i never had anybody with an infection that had to be readmitted yet if you look at the lifetime t v petition testimony it's a recurrent theme across the country and i did a little research on numbers and in my hospital if you stayed overnight if one stayed overnight for basic care it would be about eight hundred sixty dollars the literature on the other hand says that for a read mission for an infection after a mastectomy with or without reconstruction the cost is four thousand six hundred dollars that's a patient has an infection and gets i v antibiotics using one drug called banco meissen for three weeks it would be six thousand dollars so to answer your question in a circuitous way indeed it's less expensive for the insurance company to pay if a patient wants to stay one night then the consequences of infection readmission so no to the best of my knowledge no businesses have gone out of no small businesses have gone out of business because of that run into bankruptcy nor have premiums gone up because of this particular issue ok and there's also the issue of dropping health insurance we have no evidence that any business has dropped health insurance because of it either  you know across the country we've seen double digit increases every year since two thousand including the thirty states that don't have the legislature that would be very difficult to manage i think was in which to to blame those few states that have patients and  if we could say that those states didn't have increasing premiums in the others did but indeed it's across the country that for us continue to rise ok thank you mr deal thank you i agree with both of you that we need some reforms in our health the lives re system than i care system in general and i think it applies to the healthcare insurance companies the physicians the hospitals the government and in that and let me ask you just a doctor's office i guess also i'll ask you these questions do you think a patient who is facing breast cancer should have access to more quality and price information on the different health care providers that are available and the options that are available to them i think if you look at quality as defining it individualization of care excess antibiotics not necessary if you want to look at physicians on how much they spend but let's not judge us only by that let's look at the well do you think patients are entitled to more information that's what i'm asking but also how much time the doctor spins with the patient as well not the amount of money they spend on the doctor i mean ask specifics about that if a lady has breast cancer and she's trying to choose between hospital a hospital b and hospital a has a higher infection rate than hospital b is that the kind of information that this patient should have access to before she decides where to go from a sect and i think breast cancer such a personal issue that one has to take that into consideration but you know what i tell patients to do always get a second opinion go try on a doctor like issue because one doctor in a hospital might have an infection right but a particular surgeon may not so i think that there's a lot of criteria that every woman and her spouse should take into consideration before choosing their so you would even dissect it down to the individual information about individual surgeons all of the available the indeed when i do informed consent for any patient i tell them what my infection rate is or complication right the american college of surgeons sort of mandates that if you're a misinformation can be on the internet sure the perfect for the particular purpose of disseminating information so consumers will be well informed you would have a problem with that would you think that as long as we do it in a sensitive professional way with dignity so if the hospital a has a twenty five percent lower success rate in the breast cancer arena than hospital b that might be something that the patient might also want to know but you always have to look at those numbers based on the type of hospital for example i'm in an inner city hospital and the biggest other hospital in town is inner city so we have more into new patients without insurance co morbidities so when our patients present with a later stage certain micro population if you were to look at that population of my hospital and also hartford hospital the two big hospitals we would look like our patients have a higher recurrence rate but they present so i guess what i want to say to you is when that information is presented as long as it's stratified and qualified as medicare is doing now with the gravity of illness of the patient the stage that you get you're comparing hate to say apples to apples when we're talking about surgery but you're getting all the information without it being skewed because of taking care of more ill patients and if those two hospitals had a five thousand dollars difference and what they charged you for the very same procedure do you think a prospective patient ought to have that information before they make a choice as to where to go but let's hope they don't use it just on cost but where they get the best kind comprehensive individualized care but if they've got all that other information i just ask you about a couple with price they'd be a better informed patient as to where they should go when i spend about an hour with my patients before we even entertain whether i'm going to be information is valid and since you support this h r seven fifty eight which we're talking about in your testimony today don't you think that if we're going to mandate certain things we ought to give patien with breast cancer this kind of specific information so that they can be better informed and make better choices but congressman deal this is not a mandate this is resorting to choice to patients and will listen and i mean for those thirty states that don't have any legislation and your state and ms williams state my state already have legislation on this issue but for those thirty states it's a mandate and if we're going to draft a mandate then why don't we mandate the kind of information about quality infection rates cost the kind of things that i would think patients would want to know i think is long as you mandate them that insurance companies give people what they pay for let's make it an equal playing field for insurance industry and the medical profession this would be for everybody to have no problem with that well i would like to see equal transparency in the insurance industry i mean i feel bad for these women who in january signed up for one company really good company and august when she had breast cancer that transparency became very but but you can't as a physician you can't say you want to mandate things on the insurance industry and then as a physician shy away from giving patients the kind of information that they need to know about i agree i think transparency for all components of the health care field is very important like we're great thank you thank you this caps thank you again both of you for our witnesses for your testimony i want to ask give each of you a chance to respond to a question or i have a couple of questions for doctors our folks if you would and that pis a brief response it's please your state of connecticut and my state of california are two states that do have patient protection laws in place already would you discuss the effect of these laws on patient outcomes you did in your testimony but i want to see if we can draw a contrast with states that have these patient protections and some states that don't most of the states have different wording of their laws so some of them are effective and some are not and so and when you need to be redundant but when you look at the testimony of those patients you'll see patients having her riff ik experiences in states that have legislation even in my state of connecticut so certainly how the physicians interact with patients is important though we have to at least give that opportunity for the position in the patient to work together on it so there are some all states with great laws and some with not so great and then of course the states without so that if there's federal legislation it shouldn't preempt the states the stronger laws but it should be then a floor for states that have bad or weak laws it's around zero loss parity across the country i hear you so you're kind of implying them that despite twenty pretty states or more having protection laws that many of them are not adequate enough in each state thank you and that this bill that we're discussing could help to eliminate the disparities in the state which is one of our goals as a federal government thank you very much dr with william to your pay as a patient your very eloquent testimony to your experience and i want to thank you for providing a really insightful sort of personal glimpse into what it must have been a very terrifying experience for you and i just to say that the promise you made to god when you prayed out loud it certainly seems that you've lived you've met your pledge probably multiple times now certainly today in what you're doing because your statement is now part of the permanent record of the u s congress i want to end it may seem like we're repeating some i want to get really clear about some of what is driving this legislation you noted that when you had your mastectomy you didn't have the option of staying in fact you got up literally from the recovery room yes you think you never did go into a patient room and the recovery room is quite a different place from from the and they are will patiently so you got right up off the and often times it's when it's feeling quite groggy at that point and not even very clear headed about it so you may be were given some instructions that hopefully some other people were writing down or could remember because a your sister was it was your interpreter ok if i might use yours for some reason it's a rule area where we're from and yes for some reason all i can remember from the hospital hung was a herd of goats in a recommended or was did you have to leave because of your insurance plan i wasn't in the hospital it was done in an outpatient oh so you're not even go to a full fledged hospital mam i was in the surgical center and i fell through the cracks in the stone carolina how i don't know but is it standard procedure as far as you know north carolina to have found four other well i'm the fourth one in my county there's about one hundred fifty thousand in our county the doctors the nurses all went home at five or six o'clock or whatever time and this one lady you're just going to ask a about one later she's in her early forty's and she has two little ball weights her husband had passed away from cancer when she was diagnosed with breast cancer and we walked out two or three weeks the guy in the relay for life we walked this but this is the story you're telling is two or three weeks ago that you heard about her no no i knew about her story to three weeks ago when we were walked for a lie she we walked together and she says i want to show you my caregiver who entered my drawings and it was her twelve year old who was approximately ten years ago when he had to do that i thank you very much and i appreciate again mr chairman that we're having this hearing today thank you thank you thank you i know that we haven't spent as much time on this bill but i certainly think that the two of you have made  a very strong case and you know we've been able to get to the bottom of this even in the limited time that we have so thank you again and again we're going to be trying to move on this legislation and we appreciate your being here to thank you very much thanks sure let me just remind our members that you can submit additional questions for the record they should be submitted to the clerk within the next ten days and the clerk will then notify the the witnesses if we have additional questions and without objection this meeting of the subcommittee is a