Cancer 2011

john:good afternoon, everyone. audience:good afternoon. john:welcome to the white house. i want to start byextending our greetings. greeting from the president,from the first lady, and the entire teamhere at the white house. and thank all of you herein the audience here today, an incrediblecollection of activists, of members of support teams,of research organizations and

others and our incrediblechampions of change who are here today to thank you for the workthat you have been doing and the work you will be doing thisentire next month and on into the future. i want to say just a littlebit about what the idea is of champions of change that we'vebeen doing here at the white house and are asked, i think,of all of the champions we're honoring here today. one thing that the obamaadministration understands at

its core is that while we arehere in washington having the policy debates that you seeendlessly recycled on cable tv, one thing we understand is thatreal change in this country and the kind of work that all of youhave been doing only happens one community activist ata time, one champion of change at a time. and that as we all try to tackleissues like breast cancer and every other issue that weall deal with as a country, that folks like our championsof change here are who make real

change happen and makepeople's lives better every day. so what we want to do, whatwe do every week is shine a spotlight on great workthat's happening at the community level. happening at the network level. happening at theorganization level. and would ask all of you whoare in the audience and our champions here to use thisspotlight that we've shined on you to tell your story.

what we've seen week after weekis that as people across the country see what a differenceone community member can make in a broader circle, that they'reinspired to action as well. and we would ask each ofyou to tell your story, to talk about beinga champion of change. and i think together we'll beable to expand this network that is tackling breast cancer andmoving this country forward. i think it goes without sayingthat we all wish there was no need to be here today to talkabout this issue and i think

it goes without saying thatthis is something the obama administration is committed to. the focus that we've had onhealth care issues writ large and breast cancer in particular, issomething that we're very proud of. but as i said, we know that thework that all of our champions here are doing are an absoluteintegral part of all of this and we view ourselves as partnerswith all of you leading the way. so i want to thank everyonehere in the audience. i'm very much looking forward tothe discussion that we're going

to have today, sharing of bestpractices, sharing of ideas. i do ask each and every one ofyou to help us shine a spotlight on these champions of change. let their stories be told. the stories of the differencethat they're able to make in their community. and one story that i'd like tobriefly share with you about the difference one person can makeis about the next person that i'm going to askto come up here.

the person who is responsiblefor all of you being here today. shira sternberg is someonei have known for the last five years. i've worked with her at anumber of different jobs. i've seen the energy thatshe brings to an issue. i've seen the passion. and her ability to get thingsdone and her ability to bring people together. this is an issue, breast canceris something that has touched

shira in her own life. and i have seen the passion thatshe brought to bringing everyone together today and ask all ofyou to join me in welcoming shira to the stage. (applause) shira sternberg:thank you. thanks, john. and thank you everyonefor coming today. i'm honored to be with all thechampions here both on the stage and in the audience.

my name, as john said, isshira sternberg and i work for president obama just fourblocks down the road at the environmental protection agency,protecting people's health and the environment and trying tokeep our homes and workplaces free from carcinogenic chemicals. i started working forpresident obama as an organizer in iowa in 2007. organizing is a skill ipicked up from my late mother, pat barr, who brought me alongwith her when i was ten years

old back in the early '90s. we trucked all over my littletown of bennington, vermont, collecting petitions forthe national breast cancer coalition's 300 million morecampaign for breast cancer research funding. my mother was diagnosed withbreast cancer when i was four and my little sister wasjust nine months old. shortly after, along with someof the women in the room today, she helped found the nationalbreast cancer coalition.

my mother's cancer firstmetastasized when i was six. and when i was 13 it spreadto the lining of her lung. from that point on she hadregular reoccurrences in her bones, her brain, her eye,again in her lung and finally in her liver. she passed away from liverfailure when i was 20 years old. my grandmother, who is one ofthe women who helped play the role of mother for my sister andi when my mom was too sick to do so, also died this past augustof metastatic breast cancer.

it is likely only a matter oftime before my sister or i are diagnosed with breast cancerand there is not a screening, a test or a treatment to preventthat from happening and the suffering thatgoes along with it. the same is truefor over 230,000 women that will bediagnosed this year. we are here today becausemy story is not unique. i know all of youhave similar stories. we're here today because webelieve that with hard work,

persistence, education, andorganizing we can end this disease for the millions offamilies that are affected by it every day and the millions morewho can be protected from it in the future when we end it. so i thank you from the bottomof my heart for the tireless work you do. let's pause for a moment forour friends and family that have already passed away and the110 women that will die of breast cancer today.

(moment of silence) thank you. now we'll move into thediscussion so we can talk about how we're goingto solve this problem. and we'll start by having eachof the champions just say a little bit about themselves andthen we'll begin the discussion. oh, kyle's goingto bring the mic. elyse gellerman:thank you. thank you very much. good afternoon.

my name is elyse gellerman. and i am the affiliaterepresentative to the national board of susan g.komen for the cure. i'm honored to be here todayand i certainly share this honor with all of you and all ofthe women who are fighting this battle. i've been a volunteer with komenfor about 11 years and i started because as a co-survivor,i watched too many of my friends and coworkersfight this disease,

many of them successfullyi'm happen to say; some of them notvery successfully. so i'm a passionate volunteerin the denver, colorado, area of the denvermetropolitan affiliate. i worked in public policybecause i believe that is certainly part of the solution. and i think it's important thatwe advocate in our communities as well as here in washington. in my professional line of worki'm a health care consultant to

hospitals so i take my passionin to my work to make sure that services are provided forwomen, that they're provided effectively and efficiently. and that women have theresources and the treatment and coordinated care that theyneed to fight this disease. robin prothro:hi, my name is robin prothro andi am the executive director of komen maryland with susang. komen for the cure. i have been the executivedirector with komen-maryland for 12 years and before that i wasinvolved in women's health.

my background is i have abachelor's from the university of maryland in nursing and theni went to hopkins to the school of public health. and so i've been involvedwith policy and advocacy and community healthbasically for my career. it has been a wonderfulopportunity to be involved with susan g. komen. and just to tell oneof our big stories, one of the things that we'vebeen able to do in the community

at the grassroots level and inthe educational system is start a program at the university ofmaryland school of nursing for adding curriculum specificto breast cancer into the curriculum which was,believe it or not, there was no school of nursingin the united states that had curriculums specificto breast cancer. so we have now spread thatcurriculum to every state university that has a nursingschool in the state of maryland, as well as the curriculum hasbeen accepted by the school of

social work, theschool of pharmacy, the school of medicine isreviewing the curriculum now to see what's appropriatefor the medical curriculum. and it is being reviewedand accepted by schools across the country. but even more exciting than thatin terms of our sort of global outreach and awareness for womenacross the world, the program, which is on web modules, soit is very easily accessed, has been taken into and usedby 26 international schools of

nursing across the world toincrease people's awareness, understanding about breast selfexams and also other kinds of technology for early diagnosisand treatment in communities that are far-reaching. and komen-maryland is thrilledto have brought this program to all of those women. and i'm honoredto be here today. and i acknowledge all of thework that all of you all have done in your communities, too.

ann partridge:i'm ann partridge and i'ma medical oncologist at dana-farber cancer institute inboston, harvard medical school. i initially started out doingwork in breast cancer caring for women and doingclinical research. and saw far toomany young women, such as women like shira'smother as you just heard described, coming in and dealingwith a breast cancer at a very young age and all that thatentails from both a physical and emotional standpoint.

and that compelled me,along with a colleague, to create a program for youngwomen with breast cancer at our institution which now six yearslater has served hundreds of women both in our institutionand thousands more beyond with our educational programs. we have now recently beengranted through susan g. komen for the cure, who nominatedme for this honor, to develop and implement aprogram that is a virtual young women's program so that we canbring our comprehensive care as

best we can through the web andprint materials to women who are not as fortunate as tobe able to be in a very resource-intensive place in ahigh-intensity city so we can get better care out to women whomay not be able to access it on their own. so we're working very hard atthat and i've had the honor through susan g. komen for thecure to be able to develop that even further and to behere with all of you today. so thank you very much.

joyce simha:hi, i'm joyce simha. i am a 17-year breastcancer survivor, diagnosed at the age of26, and one of the -- -- and one of the cofoundersof the young survival coalition which is a board memberorganization of the national breast cancer coalition. and i am extremely passionateabout ending this disease and finding a true, that we havea true strategy in how to end the disease.

and so that's very important. and i'm going to keep itbrief as shira asked me to. pat howgan [phonetic]:thank you. my name is pat howgan [phonetic]and i'm a 14 year survivor of inflammatory breast cancer -- -- and i come from siouxfalls, south dakota. i come from a family, mygrandmother died of metastatic breast cancer as did my mother. so i feel my role in mycommunity is really the

world of all women whohave faced this disease, all women who may face it,and those families who may be touched by it. so i view that as all of us. and my role in advocacy i foundwhere i fit best is in the research environment where i tryto make certain that the voice of women and those patients whomay face diagnosis or treatment become prominent in the typesof research we get done, the evidence we have that theresearch is going to make a

difference, and theaccountability for outcomes within that research. and i'll pass it to amy. amy bonoff:thank you, pat. good afternoon, myname is amy bonoff, i'm with the nationalbreast cancer coalition. i'm a 14-yearsurvivor, like pat. and i have devotedmyself to advocacy, particularly in qualitycare and research.

so i'm going totalk a little bit, because i am now a member of theeffective stakeholder group for ahrq, the agency forresearch quality. and what i really findinteresting is that we are trying to, a, to educate allconsumers so they can make informed decisions. and we're working right now ontrying to figure out what are the best aids so that we canmake sure that everybody can evaluate evidence and makea decision along with their

clinician and realize that noteverything is absolute and there is a lot of uncertainty. in fact, there is moreuncertainty than certainty in this world. and we're trying to helpeducation and also evidence, the evidence that is soimportant and that president obama has certainly backed inthe effective health care and in the affordable healthcare as well as the cer, comparative effectiveness.

wanda lucas:my name is wanda lucas,i'm from washington, d.c. i'm a five-year breast cancersurvivor and an advocate for the national breastcancer coalition. i've had the honor andprivilege to work with women in underserved communities. and i take on that role to bethat voice for them to make sure that the work that we do to endbreast cancer does not forget about them because thedisparities and the high mortality rate among, especiallyafrican-american women,

is alarming to me. so i took my passion and i madeit a full-time job and through the national breast cancercoalition i'm working with them because we need toend this deadly disease. shirley mertz:good afternoon, myname is shirley mertz. i have been living withmetastatic breast cancer for eight years. i was diagnosed in 1991 withearly stage breast cancer and i thought after 12 years i hadbeat it, but it came back.

when i realized what i had, idecided to become a research and political activist on behalfof metastatic breast cancer patients so i began by joiningthe national breast cancer coalition which graciouslynominated me for this honor. and i became informed about thebiology of breast cancer and how to become a political activist. i was very involved insupporting the affordable care act which is very important tocancer patients in order that they might access qualitycare, affordable care and

accessible care. i try to get people involvedin being a voice for themselves through my board membership withthe metastatic breast cancer network and i do researchadvocacy with the translational breast cancer researchconsortium which has 16 breast cancer centers. i speak in that as apatient advocate on behalf of metastatic patients. and i'm on spore withthe university of chicago.

if i could just add one morething: i am so proud to be part of the national breastcancer coalition. as a field coordinatorin illinois, we are trying to get the wordout that the only way to end breast cancer is to findout what causes metastasis. any woman who get as diagnosisof breast cancer is not cured until she dies ofsomething else. and researchers do not knowwhy some people, like myself, who had early stage, goon to develop metastasis.

so as part of themetastasis summit, the national breast cancercoalition is devoting resources to focus on a deadline, breastcancer deadline 2020 to find out the causes of metastasis andi believe that maybe i will be here for 2020; maybe i will not. but i know that whati'm contributing to that organization as well as to myother areas of research will make a difference. and shira, i have to giveyou a hug a little later.

amelie ramirez:good afternoon, myname is amelie ramirez, and i am the director of theinstitute for health promotion research at the university oftexas health science center in san antonio and also theassociate director for cancer health disparities at thecancer therapy research center in san antonio. in the last 20 years i have beenfighting to reduce disparities among hispanic women. the area that i serve is a 38county area in south texas,

67% of the populationis hispanic. and one of the thingsthat has not changed, as hard as we'reworking, that still, when you say breast cancer itcreates a fear in women in being diagnosed with that. so our work is in the area ofhealth communications research, health behavioral research,to encourage women to be more proactive about their health. to come in for screening.

and if they're screened, we wantto make sure that they have the best access to comprehensivecare from treatment through survivorship. and it's through susan g.komen for the cure who nominated me today, but it'salso through their advocacy and their work that we've beenable to make this work possible. they're also very committed toreducing cancer disparities for all women throughoutthe united states. ellen stevenson:i'm ellen stevenson and i ama passionate advocate for the

american cancer society'scancer action network. i was diagnosed in 2003 withvery aggressive breast cancer. i am still in treatment. but i am emphasizing that iam living with breast cancer. i serve at a state levelin all advocacy functions. i conduct statewideadvocacy campaigns. i made a decision when i wasfirst diagnosed that i would live my disease out loud, thati would do everything i could within my power toeducate, to advocate,

and to raise significant fundsto find a cure for this disease. my disease, thanks to research,is now in a chronic condition. but treatment is nolonger possible for me. so i am living now withcancer in my lungs, again, the emphasis on living, however,i am waiting for the next breakthrough so that ican continue treatment. i've already made the decisionthat whether or not my life continues, if thatbreakthrough is not found, i will continue to walk thehalls of congress and i will do

everything i can to make surethat we influence congress to use their voice, use theirvote to bring cancer into the history books. one day i pray that i'll bewalking the halls thanking congress for having turnedmy chronic condition into a cured condition. anne creech:hi, my name is anne creechand i'm from toledo, ohio. i'm a three-timecancer survivor. i had breast cancer30 years ago,

and then i had colorectalcancer ten years ago, and then i had -- i wasdiagnosed with metastatic breast cancer again a year ago. i'm going to say first andforemost i'm a mom and i'm a grandma so i come from an arenathat i feel is very important, too, because i do not want mykids and my kidlets to have the same legacy thati have right now. i am the first one in myfamily history to have had cancer of any kind.

my sister did getcancer after i did. my brother has now beendiagnosed with lung stage iii cancer. i am with the american cancersociety cancer action network and have been working with themfor about six or seven years. i do all the things thatellen is looking forward to. we want a cure for this. we want people to step outsideof their boxes, please, and realize the importanceof this disease,

because you don't livewith this disease each day; you live with this diseasethe rest of your life. so the most important thing tome is i have watched so many of my friends and other peoplearound my area die of this disease and i feel veryfortunate that for some reason i am still here and i havea voice to say something. i want people to have hope. i also want them to have thestrength to pull their courage through their fearbecause fear is the first,

the very first feelingthat we have is fear. and you have to move throughthat and you have to go for the courage because beyondthat the courage is what pulls us through. and through the american cancersociety cancer action network we fight for thoseresearch dollars. we fight for theprevention which helped me. i was able to take advantage ofthe bcc program this last year. i had no insurance.

i had an employer that askedme to get off my insurance, and like i fool i said yes,having no idea what i was going to be walking in to. so i went with no insurance --well, i went with insurance, but it didn't cover anything butmy copay for almost six years. so i called and canceled thatinsurance the day i was biopsied with this last one. and so that's my storyas far as that part goes. but i'm there for thehope, the courage.

i want to give some of mypositiveness and some of my life to the peoplethat are facing death; i want them to keeplooking at life. and i want them to be at peace,and i want them to fight hard. anne marie murphy:i'm ann marie murphy, and i'mthe executive director of the metropolitan chicagobreast cancer task force. and i have a mother who has hadbreast cancer and actually seven relatives in the next generationand the generation before that with breast cancer.

i'm also the mother ofa biracial daughter. and the project that we work on,in the last 20 years it may not be a comfort to those whohave relatives who have died, but a lot of good thingshave actually happened in breast cancer. the death rate hascome down a lot. and we do havebetter treatments, more targeted treatments. we have better imaging.

but for some, that promisehas not been shared. in the city that ilive in, in chicago, over the last 20 years therehas been no decrease at all in death, in the death ratefor african-american women. none. it's really shocking that wecould live in a country that has so much abundance of healthcare resources but they are distributed very unevenlyand people access them very inequitably.

and therefore ourorganization, the task force, we are trying to improve thequality of care for all women. we're gathering, we're the firstfederally designated patient safety organization dedicatedexclusively to breast health and eliminating racial healthdisparities in breast cancer, and we're collecting qualitydata from all across the metro area trying to work toimprove care for all women. when we started our researchwith many of our research has showed that african-americanwoman were less likely to access

digital mammography, less likelyto have their mammograms read by breast imaging specialists, lesslikely to get their treatment in a college of surgeons-approvedtreatment center. you know, all the differentfactors that go with better outcomes were notshared equally. and so we're working to changethat so that every woman can have an equal chance at life. and we really advocate stronglyfor funding for the breast and cervical cancerprogram nationwide.

in illinois, it only funds 13%of eligible uninsured women, so 87% are left behind. we're also advocating for betteraccess and higher quality care in the medicaid program. with health care reform coming,a lot more people will be covered by medicaid, and if yourmedicaid card doesn't buy you good health care, then thecard is not worth much. so we want to make that cardmean everything for everyone that relies on it.

delia oliveri:my name is delia oliveri;i'm from las vegas, nevada. and i want to say how honoredi am to be here today. i started volunteering for theamerican cancer society 40 years ago, 13 years before i knewthat i would hear the words "you have cancer." i was diagnosed withbreast cancer in 1983. it was very difficult todiagnose because when they found out i had it on the film, thespot was no bigger than the head of a straight pin and they wereable to find it due to comparing

a baseline mammogram thati had had two years prior. as a divorced singlewoman living alone, i was extremely devastated as ihad to have a mastectomy because 28 years ago, that wasthe treatment of choice. lumpectomies were very new. the survival rate wasonly about five years. so i opted to have that done. i found myself $40,000 in debtbecause i had just changed jobs. i was a legal secretary but ihad very little insurance and i

didn't work for three months. my first ray of hope came wheni reached a recovery volunteer from the american cancersociety came to my home. she just brought joy to my lifeand i vowed that i would become a reach to recoveryvolunteer myself. i did that for 12 years. i moved to valencia, california,and continued my work and saw that these women that i wentto visit had to drive 70 miles round trip to a support groupbecause there were no support

groups there. i contacted the local hospitaland asked them if they would give me a room wherewe could have meetings. the cancer society officein san fernando valley gave me their blessing. we started the group with fivepeople and six years later we had about 30 peopleat every meeting. and as of this week,it still exists. twenty years later it stillexists and they meet the second

tuesday of every month. so i'm very proud of that. and then i was diagnosed withchronic lymphocytic leukemia in 1998 for which there is no cureand i have been on a clinical trial for that for 12 years now. so now i am an advocate for theamerican cancer society cancer action network, an organizationthat i am so passionate about and proud. i serve as the statelead ambassador for

the state of nevada. and we are here today,about 500 of us, marching the halls of congress,fighting for cancer research, asking our lawmakers tomake it a national priority. and to not cut funding and tokeep the cdc programs because it is vital. we just -- and we haveto just keep fighting it. i ask you to go to acscan.organd become a member. peggy velanger:good afternoon, myname is peggy velanger,

and i'm from southern maine. i have a bachelor's of nursingand have been a nurse for almost 40 years now. and my, most of my professionhas been working with patients and familiesdiagnosed with cancer. my roles have been earlydetection and prevention programs in screeningand promoting, and also in detection. there's so much i want to sayand i'm quite overwhelmed at all

of you here and feel veryhonored to be present and i want to thank you the americancancer society community action network for nominating me. what i want to saytoday is as a nurse, as a patient navigator workingwith women who are diagnosed; it is an unbelievableexperience for me to be part of their journey. and i want you to know that weas nurses are here for you every single day and want you toknow that we support you.

i am also, as a cancer carecoordinator for southern maine medical center which is a smallcommunity hospital in maine; i work with patients fromtime of diagnosis through end of life care. and my passion is that familiesno longer find themselves losing a family member, someone whothey care for and love dearly. and it is only through advocacy,through education and awareness, through supportive researchand funding that we can make this change.

thelma jones:thank you. my name is thelma jones andi'm from the nation's capital. as a four-year breast cancersurvivor with a rare form of breast cancer, i share thesentiments, the aspirations, and the hopes that allof my fellow champions have stated here. i am here in the capacity asan ambassador for the american cancer society and an advocatefor the american cancer society cancer action network.

as many of my fellowchampions have said, it is so important thatwe increase the funding for cancer research. there are so manybreakthroughs that are coming, and without that increase, wemay not have the breakthroughs to cure metastatic breast canceror to cure some of the other kinds of cancers thatexist in our society. from breast cancer,which is what i have, it's rare becausein this country,

when 95% of the womendevelop breast cancers, doctors know the origin. i am one of that 5% that we wereunable to identify the origin. and so it has a highrisk of reoccurrence. it is also, i was diagnosed withlarge tumors like about the size of a silver dollar. this is part of my passion doingthe volunteer work with the american cancer societyand with this lobby arm, the american cancer societycancer action network,

a passionate volunteerism thatis a family value of mine. so i bring this from somethingthat my parents imparted to me. but in addition to the work withacscan and the american cancer society, who graciouslynominated me for this award, i look at our challengefrom a global issue. i spent more than 33 years atthe world bank and so cancer here in the u.s. where we haveevery 13 minutes a woman dying of cancer, is also somethingthat's happening globally. and as we know what happenshere, affects others,

so we do have to work to makesure cancer funding is increased and sustained. but more importantly, i serve asa community navigator for spitz center for healing and the arts. and like some ofmy colleagues here, i work in adisadvantaged community; it's called east ofthe river, where the statistics there are alarming. and so on a daily basis orregular basis i worked with

18 to 20 women, my goal by theend of the year is to have, is to work with 25 so that wheni am walking in the east of the river community, they aretelling me i've gotten my mammogram and it's fine,and i've told my mothers, my sisters and my colleagues. because early detection iswhat will help to reduce breast cancer incidence in our society. kyle:so thanks again toall our champions. a few folks snuck inwith the champions here.

we're really lucky today to havedr. sheila prindiville from the national cancer institute. myra alvarez, who is thedirector of health policy at the office of health reform at hhs. and then we have the firstlady's chief of staff who is also formerly the director ofpublic engagement and my old boss, tina tchen. so we're really lucky to havethem here today and we just want to open it up for aconversation with you all.

and i'm just going tohand it over to tina. tina tchen:thank you, kyle. and thank you all for being hereand thank you especially to our champions of change foreverything that you do every day in your communitiesand for being here. and i have a special hello tomy old dear friend from chicago, anne marie murphy. in addition to being formerly atthe office of public engagement and now with the first lady'soffice as her chief of staff,

i still, i was and i stillremain the executive director of the white house council on womenand girls and it's with that particular hat on that i thinkit's my pleasure to really be with you all here today. and i'm just going tosay a couple of remarks by way of opening. you know, i have to sort of givea particular acknowledgement to the organizations that havebrought you here today because nbcc, the susan g. komen andamerican cancer were three of

the most stalwart supporters ofours in the first two years of this administration as we reallyworked very hard for the passage of the affordable care act. and breast cancer and breastcancer survivors and all of you who are warriors against thisdisease were a key part of that. i mean, i remember in particularan event we had with the first lady in the first lady's gardenin october of 2009 to really highlight the particularstruggles that people with breast cancer have -- hadunder our insurance system.

things like getting yourinsurance rescinded after you got breast cancer. things like not being able toget health insurance once you have had breast cancer. things like not havingmammograms covered. and heartbreaking stories fromsurvivors who really shared their particular -- i rememberso strikingly one woman who came and stood with the first ladyand told her story and talked about how she had caught herbreast cancer in the first

go-round by a mammogram anddetection but now that she had had it, she could no longer gethealth insurance other than at an astronomical premium cost. and i will neverforget her words, it has stayed with me forthe last year and a half, she had made the choice betweenhaving a roof over her family's head and her health to gethealth insurance to get those mammograms that sheneeded to save her life, and she had chosen to keep aroof over her family's head.

and that is a choice i'm reallyso proud of this administration to say that women will no longerhave to face in this country when the affordable care actis fully implemented in 2014. and we only have that, andwe will only keep that, i should say, we only havethat and we will only keep that because of all of your effortsand because of the grassroots efforts that you have and forall of you who have first-hand experience of whatit means, you know, to need that kind of healthinsurance and health care and

things like prevention servicesthat mean mammograms are covered with no co-pays, all of thethings that we now will have under the affordable care actyou can speak most powerfully to that and we only have theaffordable care act and will only keep it becauseof your efforts. so i salute you all andthank you all for that. so with that, i don't know ifmyra and sheila want to say something real quickly by way ofintroduction and then we really want to hear from all of you.

that's the purpose oftoday is to celebrate your accomplishments and learn fromyou and hear from you and if you have questions ofus to answer those. so, myra? myra alvarez:so just really quickly, i'mhonored to even share this stage with you all. while i don't have as personala connection to breast cancer, i am a daughter and i'm a sisterand i'm a friend and like all of you i want my loved ones to beand to stay healthy and have an

opportunity to livea healthy life. so i have the great privilege ofworking at the office of health reform at the department ofhealth and human services. and our office is tasked withcoordinating implementation of the law and working with allof you and working with our colleagues in the white houseand in congress to make sure that implementation issuccessful in moving forward so that the communities that needto hear the message the most are kept aware of the differentpolicies and the programs and

the benefits thatthey have access to. and it's really personalwhen it comes to health care, when it comes to good health;it's personal for all of us because it's our ownfamilies we're talking about. and tina touched on the subject,but i think of my own mom. it's a tough economy out there. groceries are expensive,gas is expensive, her rent is expensive, and sheworks hard to make ends meet, but i have a little sister whois a senior in high school,

she's a very expensive senior,you know, there's, you know, senior prom and winter formaland college field trips. if my mom had to choose betweenpaying her $30 co-pay for her mammogram, or giving my sister$30 to go to ucsd on a site visit, there's not a doubt inmy mind the decision my mom would make. she'd put my littlesister first. and that story's repeatedin every american family in this country.

removing that financialbarrier is telling my mom, telling every woman acrossthe country that the healthy choices that you -- theaffordable choice. and that's a reality ofthe affordable care act, giving to all americans, and i'mprivileged to be able to work on that law and ensuring thatit's implemented correctly and successfully so that moreamericans have access to the quality health careservices they deserve. sheila prindiville:good afternoon.

again, i'm veryhonored to be here, both on a professionaland really on a personal level as well. you know, professionali'm a medical oncologist, where i work with all mycolleagues at the national cancer institute to reallycoordinate cancer clinical trial research across the country. on a personal level, i'm honoredto be here to actually share, see here, but thank you,champions of change.

i do come from a family ofbreast cancer and have seen my mother and grandmother dieof it as a young child. grew up and wanted to gointo medicine, you know, for those very reasons. and most recently last year myyounger sister was diagnosed with breast cancer,but due to many, many of the changes allof your organizations have done over the years, we havehad advanced in science, but a lot of your advocacy madethe experience for my younger

sister night and day, treatmentoptions, screening options, and finding thingsat a younger age. and i hope that by the timemy daughter, who's now 12, is an adult, this will be muchfurther along in the cure. so again, thank you, all youchampions of change to be here, and i'm honored to be hereprofessionally and personally. tina tchen:thank you. well, to open us up, i thoughti'd ask one question that might be, you know, really useful forus to hear in the government,

but to all your colleagueshere in the room. and that is sort of what bestpractice or experience you have that you'd like to share witheveryone here that has really, you know, would save yourcolleagues time or really advance the issue forward, youknow, something that has really been effective in your workthat might be something that all of us can use. patricia haugen:is this on? if i can just comment, maybehopefully related to the

question, as someone who does alot of advocacy in the research area, through the work i dowith the national breast cancer coalition, what is importantis that educated advocates are involved in the decisions onresearch and the priorities and what gets funded, what is thepriority, and outcomes for that. so i would say from a practice,the very precise education of energized advocates involvedin the research process. and the other priority, ifwe look at, from, again, from the national breast cancercoalition, both good research,

educated advocates,but access to care. so no matter what we do withresearch and developing new treatments, if people do nothave access to that we cannot address the problemwith the disease. so the work with the careact that we have spoken to, putting those three together,as nbcc and as we have looked at where we are with this disease,i think although we can congratulate eachother on the good, the very good work all of usare doing, it's not good enough.

the status quo isnot acceptable. in 1975, one in 11 women wasdiagnosed with breast cancer, today it's one in eight. we don't know what causesit, how to prevent it, or how to cure it. metastatic disease is inthe back of everyone's mind who's been diagnosedwith this disease. that it could come at anytime, whether it's ten years, 20 years, 30 yearslater, and that's what will

end our lives early. so from the nationalbreast cancer coalition, we are really tryingto change the conversation about this disease. what are we doing tounderstand how to prevent it, and what are we --primary prevention, and what are we doingto prevent metastasis from ending our lives early. because no matter what else wedo, the problem is increasing,

and it's increasing almostexponentially globally. so that, hopefully that-- some comments related, but it really makesit, we do need people to have access to the care we havecurrently developed. otherwise even investmentsin research aren't meaningful because people can'ttake advantage of it. thelma jones:and -- i'd liketo -- i'm sorry -- add, as a community navigator withsmith center for healing and the arts, that it's important thatwe reach people where they are.

african americans is thetargeted population that i'm working with. thanks to a grantfrom the susan g. komen for the cure, our communitynavigation program is specifically workingwith african americans, and we're out in the community. i'm headquartered at uniontemple baptist church, which is a very popular largeafrican-american church in the city, and as we know, sociallyafrican americans have a

huge connection with churches. so we, if they are not comingin to centers and hospitals for screening, we haveto go where they are, whether it's at beauty salonsthat we frequent or whatever mechanism it is, and we alsohave to look at more from the hospital training standpoint tomake sure their training is much more culturally sensitive,and that our hospitals or our medical universities aretraining more african americans or people who look like usand understand the culture.

joy simha:and so i want to say thatin many of the things that i've seen and heard over the last17 years of my survivorship, the one thing that alwaysseems to come to pass is that we really have tofocus our resources. we spend a lot ofresources on breast cancer, and it's really importantthat we have a group of interdisciplinary specialiststhat come together and really talk about the best possibleway to end this disease. and the national breast cancercoalition has really worked hard

to define a strategy on how toaccomplish that deadline 2020. it's important that everybodybecome a stakeholder in that deadline 2020. we really work hard to holdeveryone accountable for ending this disease. we have known amazingchampions over the years, pat farv [phonetic] being one of them, carolina hinestrosa,

amazing women, randi rosenberg,one of the founding members of the young survivalcoalition, they stay with me. and i have to tell you thatwhile i celebrate where we've come to now, i acknowledgewe're all fabulous champions, there's a part of me inside thatdoesn't feel like a champion. i don't feel like a championuntil we end this disease. and then i will celebrate. not a moment sooner. shirley mertz:you asked the questionabout best practices,

and i guess from my vantagepoint of serving on panel reviews as a consumer and alsowith the particular interest in metastatic disease, i wouldlike to see more incentives for scientists to collaboratefrom different fields. i think some organizationsare trying to accomplish this, but i think more can be done,where instead of a particular institution trying to studyone aspect and keeping close to their vest what's going on,that we encourage collaboration among cancer institutions,universities, pharmaceuticals,

so that we bring togethernot only biology, biologists whothink about cancer, but also chemists andphysicists and statisticians. i just think there's muchgreater hope that we will discover, for example, thecauses of metastasis if we can look at it from avariety of ways. elyse gellerman:i think in talkingabout best practices, one of the things that wethink is very important in our komen affiliate in colorado,we cover 19 counties,

and those counties areurban, they're rural, they're mountainous, we havebarriers not only of geography but of language in additionto economic and access, and i think what we've decidedthis year the combined colorado affiliates put about $5 millioninto our communities through community grants, but itwasn't up to us to decide where the money should go. we really convened about fiveor six community coalitions, and we brought together notonly our esop providers,

we brought togethercommunity agencies, we brought together peopleworking in communities to really facilitate them deciding whatare the priorities and how can we reach the uninsuredand the underinsured women in their communities. because we don't haveenough money to go around. we had some significant cutsin our medicaid funding, so it meant thatabout 5,000 women would not have access to screening.

so we're trying to work smarterwith the resources that we have, but we're really trying to dothat at the grassroots level. we almost have, youknow, a double focus. so while we support researchthrough komen national into translational research, wewant to make sure -- we know screening works --that women have access, regardless of whatthe barriers may be. amelie ramirez:i wanted to supportthat statement, and it's really important thatwe don't let our guard down in

terms of outreach and education. we've done a greatjob, you know, we're reducing the fearout there in the community, but that we still have somesegments that haven't been reached, and so wecan't get complacent. so whatever we do, part of theaffordable healthcare act should also include outreachand education. please don't think thatwe've done our job yet, we still have a lot more to do.

anne-marie murphy:yeah. i wanted to say we have alot of outreach going on, it's great, it's fabulous. it relies on a premisethat every mammogram be created equal. we do have a best practicein the mammography quality standards act, but last week iwas in d.c. at the aacr health disparities meeting, and therewas a very interesting poster i saw whereby this particularuniversity of illinois

researcher was looking at womenwho were diagnosed with cancer and their prior mammograms. and so, and the expert waslooking for how many of those you could see evidence of themhaving had their breast cancer in the prior mammogram whenit was potentially missed. and they looked atdifferent correlates, and it showed that you weremore likely to have your cancer potentially missedif you were poor, if you didn't havehealth insurance.

it was very interesting, and itdefinitely applied that there are differences in thequality of mammograms. now when we all gofor our mammogram, we certainly assume that we'reall going to get the highest quality mammogram that exists. i think it may be time torevisit the metrics in the mammography qualitystandard act. are they reallymeasuring cancer detection rates for screening mammograms?

you know, are we, arewe really truly looking to see our cancers found? are they foundwhen they're small? are they found whenthey're early stage? and are they treated promptly. i think that's key, because wecan do a lot of outreach and we can develop a lotof new technology, but if you can't access itor the quality's uneven, then the promiseis not realized.

ann partridge:i just wantedto make a comment. i think there are two majorfocuses that we need to really fund overthe next several years, both the great organizationsthat have nominated all of us, as well as the great u.s. government, and one of them ispushing the envelope with regard to cancer research. we are really at a placewhere it's taking off, we're at the very beginning,and with the exciting changes in

molecular biology and thingsthat we're discovering, new targets, when we look at theherceptin story, we're not even, you know, so many more womenare doing so much better, it's a huge success. not that we don't have alot more room to go for improvements. so i think that's a huge placethat we need to continue to focus, and we want to encouragepeople it's the right thing for them to participate in clinicaltrials when they come down the

pike so we can continueto move forward in that. the second big focus speaksto what a lot of people here focused on, and that'sactualizing what we've already developed. that's getting women to reallyunderstand how important if they have a hormone-sensitive cancerit is to take your tamoxifen or take your aromatase inhibitorand helping them to take it to support them throughthe treatments. i've seen evidence thatif all the women who had

hormone-sensitive tumorsactually took their full five years of these medications,the mortality rates would drop substantially. that doesn't meanit's anybody's fault, it's more we need to supportour community, our women, our patients to be able totolerate these medicines or develop ones thatare more tolerable. so i think it's two-fold,the issues, and it obviously, the second issue has alot to do with access,

getting people in andgetting the right care. anne walker creech:i just want to sayto add to all of this, a lot of it sounds verycomplicated to a simple person that's out there, that when theyget cancer and they hear they're getting cancer, you know, that'sthe first thing they hear. the first thing is fear. so there's so muchthey don't understand, so much they can'tget their hands on because they don't know how.

we, i think, have all been veryfortunate where we have been associated with oneorganization, some of you two, three, four, five organizations. a lot of people out there, theyaren't connected to anything. they don't know where to go,they don't know who to talk to. they don't have any idea whatthe doctors are saying to them because as soon as they saythey have cancer they're frozen. and somebody that's withthem might not understand all that's available.

so i guess i would say you know,simplistic education and get it out there and get it out therequickly so that we can start that preventive thing so thathopefully we won't have to go through all of this as much aswe are now because the research we want to go on, obviously. we need to get tothe people, though, that are getting this day by dayby day so they know what to do with it immediately. and get to the more complicated.

tina tchen:well, i think that'san important point, and several of you haveraised that issue of outreach and education. and that's something we hereface, you know, every day, you know, very specifically tothe affordable care act and lots of other issues as well. but i know it's something myra's struggling with every day over at hhs as we implement aca. you know, how do we getthat information out.

and i'm just wonderingfor those of you, because you areactive in this field, you are working withpatients and survivors, what -- are there specificthings you have found that are effective, are more effective atreally getting that message out? and i know you talkedabout really having things. i think it's important, yourpoint about being in your church, you know, being in thecommunity and of community. i think that's an important one.

are there other things? is there new media ways? are there messaging things thatyou all have found that would be i think really helpful to us? shirley mertz:i think you mentionedsomething earlier when you talked about the peoplethat you met at the white house and they told their story. i don't think, if we think aboutthe bible and how stories are the method of teaching in that,as well as other religions,

stories are very powerful. i don't thinkthe public understands the insurance issues. i have to say withmy advanced degrees, i did not understandlifetime limits. truthfully, i mean, becausei never worried about that. and i think that whoeveris designing, you know, educational material, theydo need to make it simple, but someone needs totell a story with that,

how that affects them. no one has a conception ofwhat cancer treatments cost. and if there's one thing that ibelieve that we need to work on, is we need to bring inthe discussion of how could we get a control. some control, i know that's nota good word in this environment, but how can we get our handsaround the costs of treatment, where they just aren't goingup and up all the time. i know all the researchcosts and all that.

so i guess what i'msaying as a former teacher and high school principal, yes,education, very important. keep it simple. accompany it with a story,deliver the message where the people are, and getahead of the media. because oftentimes i don'tthink the media -- i know the media doesn't -- i'msorry, you're out there. (laughter) i don't always think thatthe media delivers the story

correctly, and it'softentimes just because they haven't walked it. i mean, when you hear someonefamous who suddenly got cancer, they're telling a story and i'msitting at home and saying -- i could have said that. but no one's goingto listen to shirley. but i mean, if it'ssomeone else out there, so use the administration'sfriends to get the word out. i'd love to sit with, you know,people like president clinton

whose mother had cancer, andhe could tell a great story. and there's all types of peoplein the movie industry who've lost mothers to breast cancer. i think, i knowpeople would listen. after they looked themover, they would listen. sheila prindiville:i just wanted to add to --something i'd like to actually hear more about. in addition to how do we getout the message about what works already, in addition, you know,patients in the clinical trial

system are really thecornerstone of making advances, and one of the things that wedon't do so well is actually getting clinical trials outinto some of the underserved and minority communities. so any, you know, thoughtsand best practices. i know some of you actuallywork in those areas, we'd love to hearalong those lines. thelma jones:i wanted to say, becauseas we look at research, because i am so pleased that theamerican cancer society's

really championing that, andit's from a biological, molecular standpointand all that. and sometimes i think some ofour research should be going more into physiological,psychological kind of things, because there is a huge, hugeelement of fear that i feel that society does not understand andembrace when it comes to cancer. i am finding that one of thereasons women are not going to seek treatment or to bescreened is because it's fear of the unknown.

and this is not, i am not justseeing this in my work as a community navigatorwith smith center. remember earlier i said iworked at the world bank? i spent 33 years there, and i amactively involved with the world bank imf breastcancer support group, and these are highlyintelligent, well-read women, but some of them have fear also. so even if we have allother things equal, if we haven't reached thatfirst element to get them there,

we're still beating ourheads against the wall. speaker:i'd just like to add that youwanted to know about getting the message out. i think it really helps notonly tell the story but to have that story come from a survivor. because we understandwhat they're feeling, we're understandingthe fear they have, because we've all hadit, so we can share that. it is important for us assurvivors and as advocates to be

educated, because there are alot of things that come out in the media that are just wrong. we see them on facebook, weget calls from our friends, and that's very important. but i think it's also importantto remember the shiras. i won't forget you. and the people thathave lost loved ones, and to remember that we havea responsibility to them. i want to say to her, we havesomething for you so that you

will not get breast cancer. that's what i want to say. i have a friend who passedaway two months before i was diagnosed. her daughter's growingup without a mother. i can't forget that. so i am trying to work reallyhard with the national breast cancer coalition ontheir deadline 2020 to stop this disease.

we need to do more andget that message out. speaker:to answer your question, weneed, as health care providers, to work more closely together,and especially with cuts in funding and the difficultyin getting insurance reimbursements and so forth. it's difficult forhospitals everywhere. and so positions are being cut. what we need to do is to putall of our resources together, work together, get the word out.

form training programs,educate our communities, and stop fighting andwork as a community. and we can make a difference. and i know at southern mainemedical center we started a focus the group, and we listenedto what women diagnosed with breast cancer neededand wanted from us, and it's made a huge differencein how we deliver our care. and i believe that that'swhat we need to do more of. speaker:and i'm going to go intoresearch and i'm going to carry

that theme forward, becausethe concept of collaboration, of changing the conversation sothat we're all working together and not secretly in ourown silos is so key. i will give you -- i wish icould remember the numbers because i gave a speech on this,about the number of studies that have been done -- something like33,000 studies done in one year, and yet i spoke to the head ofa very large pharma company, and this is something we allneed to know: he said that in his job he needs to lookat all the research and

begin to learn, youknow, decide which -- which is promising enoughto throw out the billions of dollars to follow it through. he said 90 percent of thestudies were not reproducible. in other words, all thisresearch is out there, and he said sometimes he'd callthe researcher and this is a big pharma company, they'dcall up and the researcher wouldn't talk to them. or one finally talked tohim and said, "oh, yeah,

i had trouble reproducing it,too, but when i finally got it, i published it." and that's really important,and i don't want to lose it. there's a lot of access, but weall have to be a lot smarter in how we're using thesediminishing dollars that's the reality of this world today. and we need to be able topull together, collaborate, publish all research, whatfails as well as what succeeds. and maybe then we'llbegin to get a little bit

more for our money. speaker:i'd like to just mention whenyou were talking about outreach, you know, chicago has, sadly,in medicare the lowest screening mammography rate in the country. and in fact for african-americanwomen it's even lower than the already very lowmedicare screening rate, which is about 50.1 percent. i think that people react tomessages when the messenger is familiar and respected, which iswhy i would be very eager if the

first grandma would do some psasin chicago because we really need them, or any of theother first anybodies -- -- doing some chicago psas. speaker:if i can just respond to thequestion on the clinical trials because i do somework in that area. as you know, it's a very complexissue, there's no easy answers. but, you know, it does get downto that engagement between the provider, the physicianand the patient. but many times the process isquite accelerated in the way

health care is done today. so you have surgicalintervention or you have some sort of diagnosis and then youhave an appointment and you start your chemotherapy, andto give patients -- to be respectful to patients, togive them time to understand treatment options, help themparticipate in that decision as an informed decisionmaker. much of the system andprocess doesn't enable that, it kind of takes away from it.

and the materials we do not have-- and i work a lot in phase iii clinical trials through the nci,and sit in on the central irb, we have, you know, currentefforts going on through hhs to make some changes in the commonrole to try to simplify the consense, but yetmeet requirements. i think that isvery, very important. reduce some of the delays. but we do not have anystandardized way or standards to say we need patientinterpretable materials prepared

for every trial ina consistent manner. and not that you substitutein the legal informed consent process, in that those thatare culturally sensitive, at least that there are, is somelevel of standardization there. and we also don't have goodmethods to compare it to standard -- what youcall standard of care. if a provider'sgoing to do that, they have to reinvent the wheel. so how do you help someone makethat decision which may be the

best care for them is toparticipate in a trial because there's no tool sets, backto education and support. so that's kind of a -- iguess i've talked too long. that was a passion for me. i've worked on irbs andreviewed this stuff since 2004, and people do the best jobthey can, and it's improved, but yet it's just kind of afractured process without the level of standards anddocumentation that i think could help everyone in that process.

speaker:this, in terms of sort of themessage getting out there and collaboration, i think one ofthe things that might be really helpful is that when we do putthe message out there that it's clear and concise and thatit doesn't take us backwards. like for instance when we putout all the information for recommendations for newscreening guidelines, it didn't help our cause at all. so i just had to gopublic in saying that, not that we've beendancing around it,

but i think it's the ultimatecollaboration, partnership, communication, reachingconsensus and wanting to do the best for the best, for themost number of people by the appropriate messaging. speaker:tying all this together inthe discussion about nih, what comes to mind when ittalks about clinical trials is a couple of things. fear, and then you're talkingabout making it simplistic. when i -- i know that wheni was diagnosed initially,

of course you start kind of thatrat in a maze phase where you're just going to do pretty muchwhatever your doctor's going to tell you. i really didn't know at thatpoint about the rights that i had as a patient. i didn't really understand asclearly at that moment that this was my journey. and when i metastasized, that'swhen i really began -- i mean i keep this ribbon on my car, it'sa gigantic ribbon that covers

the whole side of my carand on the wheel it says, "hope always." and i wanted to remind myselfthat every time i got in my car i wanted to know that i, again,i have incurable faith and incurable hope. but the point was that that'sthe point that i took control. but i really didn't knowwhere to go to talk about, with the clinical trials. i really didn't know icould go on a website and be

totally confused. but i also foundthat my providers, my nurses -- notjust my doctors, but even my nursesweren't that informed. and so there's a piece now thati really try -- i'll try to language this the best i can --in this journey we have a right to have quality of life aswe move through metastasis, not just or even at theinitial point of diagnosis. and that's why, i'm reallyunderscoring what's been said,

is that we really need to beable to simplify the choices that are out there. we need to be able totake away the fear. because really what happensat the point of diagnosis, right now, even despite allthe wonderful work that our organizations are doing, thereare too many women that get diagnosed and just give overtheir life because they think that someone elsehas the answer. and it really does come back,i'm just passionate in trying to

underscore what's been said. we really need to actuallysimplify this so that women know that they have a choice, thatthey can have quality of life. speaker:so, and i'd like to say that itis -- while it is important to simplify, you can't reallycommunicate about breast cancer in a simple way. i mean, breast cancer ismany different diseases. it isn't just one disease. yes, we've come a long way,but the fact still remains that

there's still the same incidenceof stage iii and iv cancers as there was 20 years ago. so we haven't madean impact there. we're still seeing thesame amount of incidence, and those are the women, thoseare the cancers that people have the longer rates of livingwith metastases with, and those are thewomen that die. and so, you know, earlydetection saves lives is not clearly the answer for the womenwho are going to be diagnosed

with stage iii and iv cancers. and it's very difficult forthose women to hear early detection saves lives becausethey do blame themselves. and that's unacceptable. it is unacceptable that womenhave to die of this disease, and the only way we're going toget there is if we really all work together as a communityto focus our resources and encourage everybody to reallywork together and, you know, interdisciplinary collaboration.

speaker:i just want to sayreally quickly, i think the respect of apatient from the very on-go, from the very get-gowith a doctor, to respect that you are theone fighting this disease, you are the one beingtold that you have cancer, you are the one that lives withthis from that moment until the rest of your life, whether youthink about it constantly or you think about itevery now and then. so i went in, my choices werea little bit different than

some people's. i chose natural every time. i've also been very,very fortunate. mine might have been caughtearly because of early detection, becauseof the preventive, and because god's just letme stay for this, i will say. i have many friends that havemade other choices and had the same journey i had with the sameoutcome or their outcome has not been so great.

but from the beginning of time,when we talked to the doctor, i know i had to tell a doctor atone point, look, it's my body, and this is me. don't look down at me becausei'm making this choice and do not tell me i'm going to die,because this is the choice i'm making. that is -- and i think everysingle person here can say when we make these choices, becausewe want all the choices that we can have.

we know our bodiesbetter than anybody else. and yes, we're taking a chanceno matter what choice we make. it is the most agonizingdecision that anybody will make, i don't care whatdecision you make. it is agonizing togo through that. and once you get through thatand you decide which way you want to go, you have togo with it 100 percent. but they have to havethat respect for you, and let you open yourselfup to get that education.

we can't be ignorant when we'redeciding whether we want to live or die and what we're goingto do with our bodies. so that's why i'm saying forme, i want to give hope to other people. i want them to be strong enoughwhen they get past that fear a little bit that they can goand they can open their doors, they know where to go, and itcan help build up that courage instead of -- instead ofmagnify and amplify that fear that is there.

so just, just understand, it'sa very hard position to be in. not that hard thingsdon't happen to everybody. we're not different thatway, it happens to everybody. this is what we've been dealt. but respect us and respect thepatient when they come in and give them the choices. speaker:thank you. so we just, we'reabout out of time. i want to make sure, there are acouple of you who haven't had a

chance to speak yet. you don't have to, but ifthere's -- but if you do and you want an opportunity, i want tomake sure that we don't end the panel with that, without acouple of you who have not said anything to have a chance. speaker:just a comment withregards to clinical trials. part of it is we, a woman, whenshe's first told she has cancer, it's usually a primary carephysician that has identified, and they don't have a lot ofinformation about what are

the next steps. so i think the early educationand reaching out to them. and also to educateahead of time. the worst time you want to hearabout a clinical trial is when you've received adiagnosis about cancer. so we need early education, andto begin demystifying what we mean by clinical trials. speaker:one last? speaker:there's one --

speaker:one last comment. speaker:there's one more issue that idon't think anyone has brought up, and again, being inhealth care, it concerns me, and that is drug shortages. so i think we need somehelp from you on that. because as i've beenvisiting hospitals, i've been talkingwith pharmacists, i've been talkingwith physicians, and they're extremelyconcerned about shortages,

particularly in the areaof chemotherapy drugs. and i know if it's, if it's me,because it could be tomorrow, or my sister or my mother, iwould want to know that the physicians and the people whoare educated about breast cancer are making a decision about mytreatment based on my condition, my tumor, and what is best forme rather than what they can get from a pharmaceutical company. and i think it's justthe tip of the iceberg, and providers areextremely concerned.

so any help withthe fda would be -- speaker:well, that is a very good pointand i'm glad that you brought that, you know, to us,and you've got the right people here. i just want to,again, in conclusion, thank you all forbeing here with us, for sharing withus your stories, and your wisdom and knowledge. i hope that this is the firstof many, many conversations.

we are here, you know,ope is here, you know, to be that connection foryou to the administration. it's something we wantyour involvement in. and all of your colleagues atthe grassroots level as well. so again, you know, we verymuch, you know, salute you, and thank you for everythingthat you do every day, and, you know, i want to communicateon behalf of the president and the first lady, you know,our great admiration for you, for each and every one ofyou, and the work that you do,

and the strength and theinspiration that you give to all of us. speaker:i just want to say one morequick thanks to shira sternberg, who really organized a lotof this and put it together. and thanks to tina and myra anddr. prindiville for doing this, and of course, thanksto all our champions. the one thing i will say, anda couple of you touched on it a little bit about the messagegetting out and the message not getting out, and we want all ofyou here today and all of you

champions to make sure you'reusing this platform and you're using your opportunity heretoday as a chance to get the message out about this fight. so thank you all forbeing here today. don't hesitate to talkabout this when you go home. tell your friends, blogabout it, write about it, put it on your facebook wall. we love it all. but really, thank youto all our champions,

we really appreciateyour being here.