Champions of Change: Leaders in the Fight against Breast Cancer

Champions of Change: Leaders in the Fight against Breast Cancer


John:
Good afternoon, everyone. Audience:
Good afternoon. John:
Welcome to the White House. I want to start by
extending our greetings. Greeting from the President,
from the First Lady, and the entire team
here at the White House. And thank all of you here
in the audience here today, an incredible
collection of activists, of members of support teams,
of research organizations and others and our incredible
Champions of Change who are here today to thank you for the work
that you have been doing and the work you will be doing this
entire next month and on into the future. I want to say just a little
bit about what the idea is of Champions of Change that we’ve
been 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 Obama
Administration understands at its core is that while we are
here in Washington having the policy debates that you see
endlessly recycled on cable TV, one thing we understand is that
real change in this country and the kind of work that all of you
have been doing only happens one community activist at
a time, one Champion of Change at a time. And that as we all try to tackle
issues like breast cancer and every other issue that we
all deal with as a country, that folks like our Champions
of Change here are who make real change happen and make
people’s lives better every day. So what we want to do, what
we do every week is shine a spotlight on great work
that’s happening at the community level. Happening at the network level. Happening at the
organization level. And would ask all of you who
are in the audience and our champions here to use this
spotlight that we’ve shined on you to tell your story. What we’ve seen week after week
is that as people across the country see what a difference
one community member can make in a broader circle, that they’re
inspired to action as well. And we would ask each of
you to tell your story, to talk about being
a Champion of Change. And I think together we’ll be
able to expand this network that is tackling breast cancer and
moving this country forward. I think it goes without saying
that we all wish there was no need to be here today to talk
about this issue and I think it goes without saying that
this is something the Obama Administration is committed to. The focus that we’ve had on
health care issues writ large and breast cancer in particular, is
something that we’re very proud of. But as I said, we know that the
work that all of our champions here are doing are an absolute
integral part of all of this and we view ourselves as partners
with all of you leading the way. So I want to thank everyone
here in the audience. I’m very much looking forward to
the discussion that we’re going to have today, sharing of best
practices, sharing of ideas. I do ask each and every one of
you to help us shine a spotlight on these Champions of Change. Let their stories be told. The stories of the difference
that they’re able to make in their community. And one story that I’d like to
briefly share with you about the difference one person can make
is about the next person that I’m going to ask
to come up here. The person who is responsible
for all of you being here today. Shira Sternberg is someone
I have known for the last five years. I’ve worked with her at a
number of different jobs. I’ve seen the energy that
she brings to an issue. I’ve seen the passion. And her ability to get things
done and her ability to bring people together. This is an issue, breast cancer
is something that has touched Shira in her own life. And I have seen the passion that
she brought to bringing everyone together today and ask all of
you to join me in welcoming Shira to the stage. (applause) Shira Sternberg:
Thank you. Thanks, John. And thank you everyone
for coming today. I’m honored to be with all the
champions here both on the stage and in the audience. My name, as John said, is
Shira Sternberg and I work for President Obama just four
blocks down the road at the Environmental Protection Agency,
protecting people’s health and the environment and trying to
keep our homes and workplaces free from carcinogenic chemicals. I started working for
President Obama as an organizer in Iowa in 2007. Organizing is a skill I
picked up from my late mother, Pat Barr, who brought me along
with her when I was ten years old back in the early ’90s. We trucked all over my little
town of Bennington, Vermont, collecting petitions for
the National Breast Cancer Coalition’s 300 Million More
Campaign for breast cancer research funding. My mother was diagnosed with
breast cancer when I was four and my little sister was
just nine months old. Shortly after, along with some
of the women in the room today, she helped found the National
Breast Cancer Coalition. My mother’s cancer first
metastasized when I was six. And when I was 13 it spread
to the lining of her lung. From that point on she had
regular reoccurrences in her bones, her brain, her eye,
again in her lung and finally in her liver. She passed away from liver
failure when I was 20 years old. My grandmother, who is one of
the women who helped play the role of mother for my sister and
I when my mom was too sick to do so, also died this past August
of metastatic breast cancer. It is likely only a matter of
time before my sister or I are diagnosed with breast cancer
and there is not a screening, a test or a treatment to prevent
that from happening and the suffering that
goes along with it. The same is true
for over 230,000 women that will be
diagnosed this year. We are here today because
my story is not unique. I know all of you
have similar stories. We’re here today because we
believe that with hard work, persistence, education, and
organizing we can end this disease for the millions of
families that are affected by it every day and the millions more
who can be protected from it in the future when we end it. So I thank you from the bottom
of my heart for the tireless work you do. Let’s pause for a moment for
our friends and family that have already passed away and the
110 women that will die of breast cancer today. (moment of silence) Thank you. Now we’ll move into the
discussion so we can talk about how we’re going
to solve this problem. And we’ll start by having each
of the champions just say a little bit about themselves and
then we’ll begin the discussion. Oh, Kyle’s going
to bring the mic. Elyse Gellerman:
Thank you. Thank you very much. Good afternoon. My name is Elyse Gellerman. And I am the affiliate
representative to the National Board of Susan G.
Komen for the Cure. I’m honored to be here today
and I certainly share this honor with all of you and all of
the women who are fighting this battle. I’ve been a volunteer with Komen
for about 11 years and I started because as a co-survivor,
I watched too many of my friends and coworkers
fight this disease, many of them successfully
I’m happen to say; some of them not
very successfully. So I’m a passionate volunteer
in the Denver, Colorado, area of the Denver
metropolitan affiliate. I worked in public policy
because I believe that is certainly part of the solution. And I think it’s important that
we advocate in our communities as well as here in Washington. In my professional line of work
I’m a health care consultant to hospitals so I take my passion
in to my work to make sure that services are provided for
women, that they’re provided effectively and efficiently. And that women have the
resources and the treatment and coordinated care that they
need to fight this disease. Thank you. (applause) Robin Prothro:
Hi, my name is Robin Prothro and
I am the Executive Director of Komen Maryland with Susan
G. Komen for the Cure. I have been the Executive
Director with Komen-Maryland for 12 years and before that I was
involved in women’s health. My background is I have a
Bachelor’s from the University of Maryland in Nursing and then
I went to Hopkins to the School of Public Health. And so I’ve been involved
with policy and advocacy and community health
basically for my career. It has been a wonderful
opportunity to be involved with Susan G. Komen. And just to tell one
of our big stories, one of the things that we’ve
been able to do in the community at the grassroots level and in
the educational system is start a program at the University of
Maryland School of Nursing for adding curriculum specific
to breast cancer into the curriculum which was,
believe it or not, there was no school of nursing
in the United States that had curriculums specific
to breast cancer. So we have now spread that
curriculum to every state university that has a nursing
school in the State of Maryland, as well as the curriculum has
been accepted by the School of Social Work, the
School of Pharmacy, the School of Medicine is
reviewing the curriculum now to see what’s appropriate
for the medical curriculum. And it is being reviewed
and accepted by schools across the country. But even more exciting than that
in terms of our sort of global outreach and awareness for women
across the world, the program, which is on web modules, so
it is very easily accessed, has been taken into and used
by 26 international schools of nursing across the world to
increase people’s awareness, understanding about breast self
exams and also other kinds of technology for early diagnosis
and treatment in communities that are far-reaching. And Komen-Maryland is thrilled
to have brought this program to all of those women. And I’m honored
to be here today. And I acknowledge all of the
work that all of you all have done in your communities, too. Thank you. (applause) Ann Partridge:
I’m Ann Partridge and I’m
a medical oncologist at Dana-Farber Cancer Institute in
Boston, Harvard Medical School. I initially started out doing
work in breast cancer caring for women and doing
clinical research. And saw far too
many young women, such as women like Shira’s
mother as you just heard described, coming in and dealing
with a breast cancer at a very young age and all that that
entails from both a physical and emotional standpoint. And that compelled me,
along with a colleague, to create a program for young
women with breast cancer at our institution which now six years
later has served hundreds of women both in our institution
and thousands more beyond with our educational programs. We have now recently been
granted through Susan G. Komen for the Cure, who nominated
me for this honor, to develop and implement a
program that is a virtual young women’s program so that we can
bring our comprehensive care as best we can through the web and
print materials to women who are not as fortunate as to
be able to be in a very resource-intensive place in a
high-intensity city so we can get better care out to women who
may not be able to access it on their own. So we’re working very hard at
that and I’ve had the honor through Susan G. Komen for the
Cure to be able to develop that even further and to be
here with all of you today. So thank you very much. (applause) Joyce Simha:
Hi, I’m Joyce Simha. I am a 17-year breast
cancer survivor, diagnosed at the age of
26, and one of the — (applause) — and one of the cofounders
of the Young Survival Coalition which is a board member
organization of the National Breast Cancer Coalition. And I am extremely passionate
about ending this disease and finding a true, that we have
a true strategy in how to end the disease. And so that’s very important. And I’m going to keep it
brief 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 — (applause) — and I come from Sioux
Falls, South Dakota. I come from a family, my
grandmother died of metastatic breast cancer as did my mother. So I feel my role in my
community is really the world of all women who
have 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 found
where I fit best is in the research environment where I try
to make certain that the voice of women and those patients who
may face diagnosis or treatment become prominent in the types
of research we get done, the evidence we have that the
research is going to make a difference, and the
accountability for outcomes within that research. And I’ll pass it to Amy. Amy Bonoff:
Thank you, Pat. (applause) Good afternoon, my
name is Amy Bonoff, I’m with the National
Breast Cancer Coalition. I’m a 14-year
survivor, like Pat. And I have devoted
myself to advocacy, particularly in quality
care and research. So I’m going to
talk a little bit, because I am now a member of the
effective stakeholder group for AHRQ, the Agency for
Research Quality. And what I really find
interesting is that we are trying to, A, to educate all
consumers so they can make informed decisions. And we’re working right now on
trying to figure out what are the best aids so that we can
make sure that everybody can evaluate evidence and make
a decision along with their clinician and realize that not
everything is absolute and there is a lot of uncertainty. In fact, there is more
uncertainty than certainty in this world. And we’re trying to help
education and also evidence, the evidence that is so
important and that President Obama has certainly backed in
the effective health care and in the affordable health
care as well as the CER, comparative effectiveness. Thank you. (applause) Wanda Lucas:
My name is Wanda Lucas,
I’m from Washington, D.C. I’m a five-year breast cancer
survivor and an advocate for the National Breast
Cancer Coalition. I’ve had the honor and
privilege to work with women in underserved communities. And I take on that role to be
that voice for them to make sure that the work that we do to end
breast cancer does not forget about them because the
disparities and the high mortality rate among, especially
African-American women, is alarming to me. So I took my passion and I made
it a full-time job and through the National Breast Cancer
Coalition I’m working with them because we need to
end this deadly disease. Thank you. (applause) Shirley Mertz:
Good afternoon, my
name is Shirley Mertz. I have been living with
metastatic breast cancer for eight years. I was diagnosed in 1991 with
early stage breast cancer and I thought after 12 years I had
beat it, but it came back. When I realized what I had, I
decided to become a research and political activist on behalf
of metastatic breast cancer patients so I began by joining
the National Breast Cancer Coalition which graciously
nominated me for this honor. And I became informed about the
biology of breast cancer and how to become a political activist. I was very involved in
supporting the Affordable Care Act which is very important to
cancer patients in order that they might access quality
care, affordable care and accessible care. I try to get people involved
in being a voice for themselves through my board membership with
the metastatic breast cancer network and I do research
advocacy with the Translational Breast Cancer Research
Consortium which has 16 breast cancer centers. I speak in that as a
patient advocate on behalf of metastatic patients. And I’m on SPORE with
the University of Chicago. If I could just add one more
thing: I am so proud to be part of the National Breast
Cancer Coalition. As a field coordinator
in Illinois, we are trying to get the word
out that the only way to end breast cancer is to find
out what causes metastasis. Any woman who get as diagnosis
of breast cancer is not cured until she dies of
something else. And researchers do not know
why some people, like myself, who had early stage, go
on to develop metastasis. So as part of the
metastasis summit, the National Breast Cancer
Coalition is devoting resources to focus on a deadline, breast
cancer deadline 2020 to find out the causes of metastasis and
I believe that maybe I will be here for 2020; maybe I will not. But I know that what
I’m contributing to that organization as well as to my
other areas of research will make a difference. And Shira, I have to give
you a hug a little later. (applause) Amelie Ramirez:
Good afternoon, my
name is Amelie Ramirez, and I am the Director of the
Institute for Health Promotion Research at the University of
Texas Health Science Center in San Antonio and also the
Associate Director for Cancer Health Disparities at the
Cancer Therapy Research Center in San Antonio. In the last 20 years I have been
fighting to reduce disparities among Hispanic women. The area that I serve is a 38
county area in South Texas, 67% of the population
is Hispanic. And one of the things
that has not changed, as hard as we’re
working, that still, when you say breast cancer it
creates a fear in women in being diagnosed with that. So our work is in the area of
health 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 want
to make sure that they have the best access to comprehensive
care from treatment through survivorship. And it’s through Susan G.
Komen for the Cure who nominated me today, but it’s
also through their advocacy and their work that we’ve been
able to make this work possible. They’re also very committed to
reducing cancer disparities for all women throughout
the United States. Thank you. (applause) Ellen Stevenson:
I’m Ellen Stevenson and I am
a passionate advocate for the American Cancer Society’s
Cancer Action Network. I was diagnosed in 2003 with
very aggressive breast cancer. I am still in treatment. But I am emphasizing that I
am living with breast cancer. I serve at a state level
in all advocacy functions. I conduct statewide
advocacy campaigns. I made a decision when I was
first diagnosed that I would live my disease out loud, that
I would do everything I could within my power to
educate, to advocate, and to raise significant funds
to find a cure for this disease. My disease, thanks to research,
is now in a chronic condition. But treatment is no
longer possible for me. So I am living now with
cancer in my lungs, again, the emphasis on living, however,
I am waiting for the next breakthrough so that I
can continue treatment. I’ve already made the decision
that whether or not my life continues, if that
breakthrough is not found, I will continue to walk the
halls of Congress and I will do everything I can to make sure
that we influence Congress to use their voice, use their
vote to bring cancer into the history books. One day I pray that I’ll be
walking the halls thanking Congress for having turned
my chronic condition into a cured condition. Thank you. (applause) Anne Creech:
Hi, my name is Anne Creech
and I’m from Toledo, Ohio. I’m a three-time
cancer survivor. I had breast cancer
30 years ago, and then I had colorectal
cancer ten years ago, and then I had — I was
diagnosed with metastatic breast cancer again a year ago. I’m going to say first and
foremost I’m a mom and I’m a grandma so I come from an arena
that I feel is very important, too, because I do not want my
kids and my kidlets to have the same legacy that
I have right now. I am the first one in my
family history to have had cancer of any kind. My sister did get
cancer after I did. My brother has now been
diagnosed with lung Stage III cancer. I am with the American Cancer
Society Cancer Action Network and have been working with them
for about six or seven years. I do all the things that
Ellen is looking forward to. We want a cure for this. We want people to step outside
of their boxes, please, and realize the importance
of this disease, because you don’t live
with this disease each day; you live with this disease
the rest of your life. So the most important thing to
me is I have watched so many of my friends and other people
around my area die of this disease and I feel very
fortunate that for some reason I am still here and I have
a voice to say something. I want people to have hope. I also want them to have the
strength to pull their courage through their fear
because fear is the first, the very first feeling
that we have is fear. And you have to move through
that and you have to go for the courage because beyond
that the courage is what pulls us through. And through the American Cancer
Society Cancer Action Network we fight for those
research dollars. We fight for the
prevention which helped me. I was able to take advantage of
the BCC program this last year. I had no insurance. I had an employer that asked
me 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 but
my copay for almost six years. So I called and canceled that
insurance the day I was biopsied with this last one. And so that’s my story
as far as that part goes. But I’m there for the
hope, the courage. I want to give some of my
positiveness and some of my life to the people
that are facing death; I want them to keep
looking at life. And I want them to be at peace,
and I want them to fight hard. Thank you. (applause) Anne Marie Murphy:
I’m Ann Marie Murphy, and I’m
the Executive Director of the Metropolitan Chicago
Breast Cancer Task Force. And I have a mother who has had
breast cancer and actually seven relatives in the next generation
and the generation before that with breast cancer. I’m also the mother of
a biracial daughter. And the project that we work on,
in the last 20 years it may not be a comfort to those who
have relatives who have died, but a lot of good things
have actually happened in breast cancer. The death rate has
come down a lot. And we do have
better treatments, more targeted treatments. We have better imaging. But for some, that promise
has not been shared. In the city that I
live in, in Chicago, over the last 20 years there
has been no decrease at all in death, in the death rate
for African-American women. None. It’s really shocking that we
could live in a country that has so much abundance of health
care resources but they are distributed very unevenly
and people access them very inequitably. And therefore our
organization, the task force, we are trying to improve the
quality of care for all women. We’re gathering, we’re the first
federally designated patient safety organization dedicated
exclusively to breast health and eliminating racial health
disparities in breast cancer, and we’re collecting quality
data from all across the Metro area trying to work to
improve care for all women. When we started our research
with many of our research has showed that African-American
woman were less likely to access digital mammography, less likely
to have their mammograms read by breast imaging specialists, less
likely to get their treatment in a college of surgeons-approved
treatment center. You know, all the different
factors that go with better outcomes were not
shared equally. And so we’re working to change
that so that every woman can have an equal chance at life. And we really advocate strongly
for funding for the breast and cervical cancer
program nationwide. In Illinois, it only funds 13%
of eligible uninsured women, so 87% are left behind. We’re also advocating for better
access and higher quality care in the Medicaid program. With Health Care Reform coming,
a lot more people will be covered by Medicaid, and if your
Medicaid card doesn’t buy you good health care, then the
card is not worth much. So we want to make that card
mean everything for everyone that relies on it. Thank you. (applause) Delia Oliveri:
My name is Delia Oliveri;
I’m from Las Vegas, Nevada. And I want to say how honored
I am to be here today. I started volunteering for the
American Cancer Society 40 years ago, 13 years before I knew
that I would hear the words “you have cancer.” I was diagnosed with
breast cancer in 1983. It was very difficult to
diagnose because when they found out I had it on the film, the
spot was no bigger than the head of a straight pin and they were
able to find it due to comparing a baseline mammogram that
I had had two years prior. As a divorced single
woman living alone, I was extremely devastated as I
had to have a mastectomy because 28 years ago, that was
the treatment of choice. Lumpectomies were very new. The survival rate was
only about five years. So I opted to have that done. I found myself $40,000 in debt
because I had just changed jobs. I was a legal secretary but I
had very little insurance and I didn’t work for three months. My first ray of hope came when
I reached a recovery volunteer from the American Cancer
Society came to my home. She just brought joy to my life
and I vowed that I would become a reach to recovery
volunteer myself. I did that for 12 years. I moved to Valencia, California,
and continued my work and saw that these women that I went
to visit had to drive 70 miles round trip to a support group
because there were no support groups there. I contacted the local hospital
and asked them if they would give me a room where
we could have meetings. The Cancer Society office
in San Fernando Valley gave me their blessing. We started the group with five
people and six years later we had about 30 people
at every meeting. And as of this week,
it still exists. Twenty years later it still
exists and they meet the second Tuesday of every month. So I’m very proud of that. And then I was diagnosed with
chronic lymphocytic leukemia in 1998 for which there is no cure
and I have been on a clinical trial for that for 12 years now. So now I am an advocate for the
American Cancer Society Cancer Action Network, an organization
that I am so passionate about and proud. I serve as the state
lead 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 to
make it a national priority. And to not cut funding and to
keep the CDC programs because it is vital. We just — and we have
to just keep fighting it. I ask you to go to ACSCAN.org
and become a member. Thank you. (applause) Peggy Velanger:
Good afternoon, my
name is Peggy Velanger, and I’m from Southern Maine. I have a Bachelor’s of Nursing
and have been a nurse for almost 40 years now. And my, most of my profession
has been working with patients and families
diagnosed with cancer. My roles have been early
detection and prevention programs in screening
and promoting, and also in detection. There’s so much I want to say
and I’m quite overwhelmed at all of you here and feel very
honored to be present and I want to thank you the American
Cancer Society Community Action Network for nominating me. What I want to say
today is as a nurse, as a patient navigator working
with women who are diagnosed; it is an unbelievable
experience for me to be part of their journey. And I want you to know that we
as nurses are here for you every single day and want you to
know that we support you. I am also, as a cancer care
coordinator for Southern Maine Medical Center which is a small
community hospital in Maine; I work with patients from
time of diagnosis through end of life care. And my passion is that families
no longer find themselves losing a family member, someone who
they care for and love dearly. And it is only through advocacy,
through education and awareness, through supportive research
and funding that we can make this change. Thank you. (applause) Thelma Jones:
Thank you. My name is Thelma Jones and
I’m from the nation’s capital. As a four-year breast cancer
survivor with a rare form of breast cancer, I share the
sentiments, the aspirations, and the hopes that all
of my fellow Champions have stated here. I am here in the capacity as
an ambassador for the American Cancer Society and an advocate
for the American Cancer Society Cancer Action Network. As many of my fellow
Champions have said, it is so important that
we increase the funding for cancer research. There are so many
breakthroughs that are coming, and without that increase, we
may not have the breakthroughs to cure metastatic breast cancer
or to cure some of the other kinds of cancers that
exist in our society. From breast cancer,
which is what I have, it’s rare because
in this country, when 95% of the women
develop breast cancers, doctors know the origin. I am one of that 5% that we were
unable to identify the origin. And so it has a high
risk of reoccurrence. It is also, I was diagnosed with
large tumors like about the size of a silver dollar. This is part of my passion doing
the volunteer work with the American Cancer Society
and with this lobby arm, the American Cancer Society
Cancer Action Network, a passionate volunteerism that
is a family value of mine. So I bring this from something
that my parents imparted to me. But in addition to the work with
ACScan and the American Cancer Society, who graciously
nominated me for this award, I look at our challenge
from a global issue. I spent more than 33 years at
the World Bank and so cancer here in the U.S. where we have
every 13 minutes a woman dying of cancer, is also something
that’s happening globally. And as we know what happens
here, affects others, so we do have to work to make
sure cancer funding is increased and sustained. But more importantly, I serve as
a community navigator for Spitz Center for Healing and the Arts. And like some of
my colleagues here, I work in a
disadvantaged community; it’s called East of
the River, where the statistics there are alarming. And so on a daily basis or
regular basis I worked with 18 to 20 women, my goal by the
end of the year is to have, is to work with 25 so that when
I am walking in the East of the River community, they are
telling me I’ve gotten my mammogram and it’s fine,
and I’ve told my mothers, my sisters and my colleagues. Because early detection is
what will help to reduce breast cancer incidence in our society. Thank you. (applause) Kyle:
So thanks again to
all our Champions. A few folks snuck in
with the Champions here. We’re really lucky today to have
Dr. Sheila Prindiville from the National Cancer Institute. Myra Alvarez, who is the
Director of Health Policy at the Office of Health Reform at HHS. And then we have the First
Lady’s Chief of Staff who is also formerly the Director of
Public Engagement and my old boss, Tina Tchen. So we’re really lucky to have
them here today and we just want to open it up for a
conversation with you all. And I’m just going to
hand it over to Tina. Tina Tchen:
Thank you, Kyle. And thank you all for being here
and thank you especially to our Champions of Change for
everything that you do every day in your communities
and for being here. And I have a special hello to
my old dear friend from Chicago, Anne Marie Murphy. In addition to being formerly at
the Office of Public Engagement and now with the First Lady’s
office as her Chief of Staff, I still, I was and I still
remain the Executive Director of the White House Council on Women
and Girls and it’s with that particular hat on that I think
it’s my pleasure to really be with you all here today. And I’m just going to
say a couple of remarks by way of opening. You know, I have to sort of give
a particular acknowledgement to the organizations that have
brought you here today because NBCC, the Susan G. Komen and
American Cancer were three of the most stalwart supporters of
ours in the first two years of this Administration as we really
worked very hard for the passage of the Affordable Care Act. And breast cancer and breast
cancer survivors and all of you who are warriors against this
disease were a key part of that. I mean, I remember in particular
an event we had with the First Lady in the First Lady’s Garden
in October of 2009 to really highlight the particular
struggles that people with breast cancer have — had
under our insurance system. Things like getting your
insurance rescinded after you got breast cancer. Things like not being able to
get health insurance once you have had breast cancer. Things like not having
mammograms covered. And heartbreaking stories from
survivors who really shared their particular — I remember
so strikingly one woman who came and stood with the First Lady
and told her story and talked about how she had caught her
breast cancer in the first go-round by a mammogram and
detection but now that she had had it, she could no longer get
health insurance other than at an astronomical premium cost. And I will never
forget her words, it has stayed with me for
the last year and a half, she had made the choice between
having a roof over her family’s head and her health to get
health insurance to get those mammograms that she
needed to save her life, and she had chosen to keep a
roof over her family’s head. And that is a choice I’m really
so proud of this Administration to say that women will no longer
have to face in this country when the Affordable Care Act
is fully implemented in 2014. (applause) And we only have that, and
we will only keep that, I should say, we only have
that and we will only keep that because of all of your efforts
and because of the grassroots efforts that you have and for
all of you who have first-hand experience of what
it means, you know, to need that kind of health
insurance and health care and things like prevention services
that mean mammograms are covered with no co-pays, all of the
things that we now will have under the Affordable Care Act
you can speak most powerfully to that and we only have the
Affordable Care Act and will only keep it because
of your efforts. So I salute you all and
thank you all for that. So with that, I don’t know if
Myra and Sheila want to say something real quickly by way of
introduction and then we really want to hear from all of you. That’s the purpose of
today is to celebrate your accomplishments and learn from
you and hear from you and if you have questions of
us to answer those. So, Myra? Myra Alvarez:
So just really quickly, I’m
honored to even share this stage with you all. While I don’t have as personal
a connection to breast cancer, I am a daughter and I’m a sister
and I’m a friend and like all of you I want my loved ones to be
and to stay healthy and have an opportunity to live
a healthy life. So I have the great privilege of
working at the Office of Health Reform at the Department of
Health and Human Services. And our office is tasked with
coordinating implementation of the law and working with all
of you and working with our colleagues in the White House
and in Congress to make sure that implementation is
successful in moving forward so that the communities that need
to hear the message the most are kept aware of the different
policies and the programs and the benefits that
they have access to. And it’s really personal
when it comes to health care, when it comes to good health;
it’s personal for all of us because it’s our own
families 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 she
works hard to make ends meet, but I have a little sister who
is a senior in high school, she’s a very expensive senior,
you know, there’s, you know, senior prom and winter formal
and college field trips. If my mom had to choose between
paying 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 in
my mind the decision my mom would make. She’d put my little
sister first. And that story’s repeated
in every American family in this country. Removing that financial
barrier is telling my mom, telling every woman across
the country that the healthy choices that you — the
affordable choice. And that’s a reality of
the Affordable Care Act, giving to all Americans, and I’m
privileged to be able to work on that law and ensuring that
it’s implemented correctly and successfully so that more
Americans have access to the quality health care
services they deserve. (applause) Sheila Prindiville:
Good afternoon. Again, I’m very
honored to be here, Both on a professional
and really on a personal level as well. You know, professional
I’m a medical oncologist, where I work with all my
colleagues at the National Cancer Institute to really
coordinate cancer clinical trial research across the country. On a personal level, I’m honored
to be here to actually share, see here, but thank you,
Champions of Change. I do come from a family of
breast cancer and have seen my mother and grandmother die
of it as a young child. Grew up and wanted to go
into medicine, you know, for those very reasons. And most recently last year my
younger sister was diagnosed with breast cancer,
but due to many, many of the changes all
of your organizations have done over the years, we have
had advanced in science, but a lot of your advocacy made
the experience for my younger sister night and day, treatment
options, screening options, and finding things
at a younger age. And I hope that by the time
my daughter, who’s now 12, is an adult, this will be much
further along in the cure. So again, thank you, all you
Champions of Change to be here, and I’m honored to be here
professionally and personally. (applause) Tina Tchen:
Thank you. Well, to open us up, I thought
I’d ask one question that might be, you know, really useful for
us to hear in the government, but to all your colleagues
here in the room. And that is sort of what best
practice or experience you have that you’d like to share with
everyone here that has really, you know, would save your
colleagues time or really advance the issue forward, you
know, something that has really been effective in your work
that might be something that all of us can use. Patricia Haugen:
Is this on? If I can just comment, maybe
hopefully related to the question, as someone who does a
lot of advocacy in the research area, through the work I do
with the National Breast Cancer Coalition, what is important
is that educated advocates are involved in the decisions on
research and the priorities and what gets funded, what is the
priority, and outcomes for that. So I would say from a practice,
the very precise education of energized advocates involved
in the research process. And the other priority, if
we look at, from, again, from the National Breast Cancer
Coalition, both good research, educated advocates,
but access to care. So no matter what we do with
research and developing new treatments, if people do not
have access to that we cannot address the problem
with the disease. So the work with the care
act 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 each
other on the good, the very good work all of us
are doing, it’s not good enough. The status quo is
not acceptable. In 1975, one in 11 women was
diagnosed with breast cancer, today it’s one in eight. We don’t know what causes
it, how to prevent it, or how to cure it. Metastatic disease is in
the back of everyone’s mind who’s been diagnosed
with this disease. That it could come at any
time, whether it’s ten years, 20 years, 30 years
later, and that’s what will end our lives early. So from the National
Breast Cancer Coalition, we are really trying
to change the conversation about this disease. What are we doing to
understand how to prevent it, and what are we —
primary prevention, and what are we doing
to prevent metastasis from ending our lives early. Because no matter what else we
do, the problem is increasing, and it’s increasing almost
exponentially globally. So that, hopefully that
— some comments related, but it really makes
it, we do need people to have access to the care we have
currently developed. Otherwise even investments
in research aren’t meaningful because people can’t
take advantage of it. Thelma Jones:
And — I’d like
to — I’m sorry — add, as a community navigator with
Smith Center for Healing and the Arts, that it’s important that
we reach people where they are. African Americans is the
targeted population that I’m working with. Thanks to a grant
from the Susan G. Komen for the Cure, our community
navigation program is specifically working
with African Americans, and we’re out in the community. I’m headquartered at Union
Temple Baptist Church, which is a very popular large
African-American church in the city, and as we know, socially
African Americans have a huge connection with churches. So we, if they are not coming
in to centers and hospitals for screening, we have
to go where they are, whether it’s at beauty salons
that we frequent or whatever mechanism it is, and we also
have to look at more from the hospital training standpoint to
make sure their training is much more culturally sensitive,
and that our hospitals or our medical universities are
training more African Americans or people who look like us
and understand the culture. Thank you. Joy Simha:
And so I want to say that
in many of the things that I’ve seen and heard over the last
17 years of my survivorship, the one thing that always
seems to come to pass is that we really have to
focus our resources. We spend a lot of
resources on breast cancer, and it’s really important
that we have a group of interdisciplinary specialists
that come together and really talk about the best possible
way to end this disease. And the National Breast Cancer
Coalition has really worked hard to define a strategy on how to
accomplish that deadline 2020. It’s important that everybody
become a stakeholder in that deadline 2020. We really work hard to hold
everyone accountable for ending this disease. We have known amazing
champions over the years, Pat Farv [phonetic] being one of them, Carolina Hinestrosa, amazing women, Randi Rosenberg,
one of the founding members of the Young Survival
Coalition, they stay with me. And I have to tell you that
while I celebrate where we’ve come to now, I acknowledge
we’re all fabulous champions, there’s a part of me inside that
doesn’t feel like a champion. I don’t feel like a champion
until we end this disease. And then I will celebrate. Not a moment sooner. Shirley Mertz:
You asked the question
about best practices, and I guess from my vantage
point of serving on panel reviews as a consumer and also
with the particular interest in metastatic disease, I would
like to see more incentives for scientists to collaborate
from different fields. I think some organizations
are trying to accomplish this, but I think more can be done,
where instead of a particular institution trying to study
one aspect and keeping close to their vest what’s going on,
that we encourage collaboration among cancer institutions,
universities, pharmaceuticals, so that we bring together
not only biology, biologists who
think about cancer, but also chemists and
physicists and statisticians. I just think there’s much
greater hope that we will discover, for example, the
causes of metastasis if we can look at it from a
variety of ways. Elyse Gellerman:
I think in talking
about best practices, one of the things that we
think is very important in our Komen affiliate in Colorado,
we cover 19 counties, and those counties are
urban, they’re rural, they’re mountainous, we have
barriers not only of geography but of language in addition
to economic and access, and I think what we’ve decided
this year the combined Colorado affiliates put about $5 million
into our communities through community grants, but it
wasn’t up to us to decide where the money should go. We really convened about five
or six community coalitions, and we brought together not
only our ESOP providers, we brought together
community agencies, we brought together people
working in communities to really facilitate them deciding what
are the priorities and how can we reach the uninsured
and the underinsured women in their communities. Because we don’t have
enough money to go around. We had some significant cuts
in our Medicaid funding, so it meant that
about 5,000 women would not have access to screening. So we’re trying to work smarter
with the resources that we have, but we’re really trying to do
that at the grassroots level. We almost have, you
know, a double focus. So while we support research
through Komen National into translational research, we
want to make sure — we know screening works —
that women have access, regardless of what
the barriers may be. Amelie Ramirez:
I wanted to support
that statement, and it’s really important that
we don’t let our guard down in terms of outreach and education. We’ve done a great
job, you know, we’re reducing the fear
out there in the community, but that we still have some
segments that haven’t been reached, and so we
can’t get complacent. So whatever we do, part of the
Affordable Healthcare Act should also include outreach
and education. Please don’t think that
we’ve done our job yet, we still have a lot more to do. Anne-Marie Murphy:
Yeah. I wanted to say we have a
lot of outreach going on, it’s great, it’s fabulous. It relies on a premise
that every mammogram be created equal. We do have a best practice
in the Mammography Quality Standards Act, but last week I
was in D.C. at the AACR Health Disparities meeting, and there
was a very interesting poster I saw whereby this particular
University of Illinois researcher was looking at women
who were diagnosed with cancer and their prior mammograms. And so, and the expert was
looking for how many of those you could see evidence of them
having had their breast cancer in the prior mammogram when
it was potentially missed. And they looked at
different correlates, and it showed that you were
more likely to have your cancer potentially missed
if you were poor, if you didn’t have
health insurance. It was very interesting, and it
definitely applied that there are differences in the
quality of mammograms. Now when we all go
for our mammogram, we certainly assume that we’re
all going to get the highest quality mammogram that exists. I think it may be time to
revisit the metrics in the Mammography Quality
Standard Act. Are they really
measuring cancer detection rates for screening mammograms? You know, are we, are
we really truly looking to see our cancers found? Are they found
when they’re small? Are they found when
they’re early stage? And are they treated promptly. I think that’s key, because we
can do a lot of outreach and we can develop a lot
of new technology, but if you can’t access it
or the quality’s uneven, then the promise
is not realized. Ann Partridge:
I just wanted
to make a comment. I think there are two major
focuses that we need to really fund over
the next several years, both the great organizations
that have nominated all of us, as well as the great U.S. government, and one of them is
pushing the envelope with regard to cancer research. We are really at a place
where it’s taking off, we’re at the very beginning,
and with the exciting changes in molecular biology and things
that we’re discovering, new targets, when we look at the
Herceptin story, we’re not even, you know, so many more women
are doing so much better, it’s a huge success. Not that we don’t have a
lot more room to go for improvements. So I think that’s a huge place
that we need to continue to focus, and we want to encourage
people it’s the right thing for them to participate in clinical
trials when they come down the pike so we can continue
to move forward in that. The second big focus speaks
to what a lot of people here focused on, and that’s
actualizing what we’ve already developed. That’s getting women to really
understand how important if they have a hormone-sensitive cancer
it is to take your tamoxifen or take your aromatase inhibitor
and helping them to take it to support them through
the treatments. I’ve seen evidence that
if all the women who had hormone-sensitive tumors
actually took their full five years of these medications,
the mortality rates would drop substantially. That doesn’t mean
it’s anybody’s fault, it’s more we need to support
our community, our women, our patients to be able to
tolerate these medicines or develop ones that
are more tolerable. So I think it’s two-fold,
the issues, and it obviously, the second issue has a
lot to do with access, getting people in and
getting the right care. Anne Walker Creech:
I just want to say
to add to all of this, a lot of it sounds very
complicated to a simple person that’s out there, that when they
get cancer and they hear they’re getting cancer, you know, that’s
the first thing they hear. The first thing is fear. So there’s so much
they don’t understand, so much they can’t
get their hands on because they don’t know how. We, I think, have all been very
fortunate where we have been associated with one
organization, some of you two, three, four, five organizations. A lot of people out there, they
aren’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 what
the doctors are saying to them because as soon as they say
they have cancer they’re frozen. And somebody that’s with
them 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 there
quickly so that we can start that preventive thing so that
hopefully we won’t have to go through all of this as much as
we are now because the research we want to go on, obviously. We need to get to
the people, though, that are getting this day by day
by day so they know what to do with it immediately. And get to the more complicated. Tina Tchen:
Well, I think that’s
an important point, and several of you have
raised that issue of outreach and education. And that’s something we here
face, you know, every day, you know, very specifically to
the Affordable Care Act and lots of other issues as well. But I know it’s something my
ra’s struggling with every day over at HHS as we implement ACA. You know, how do we get
that information out. And I’m just wondering
for those of you, because you are
active in this field, you are working with
patients and survivors, what — are there specific
things you have found that are effective, are more effective at
really getting that message out? And I know you talked
about really having things. I think it’s important, your
point about being in your church, you know, being in the
community and of community. I think that’s an important one. Are there other things? Is there new media ways? Are there messaging things that
you all have found that would be I think really helpful to us? Shirley Mertz:
I think you mentioned
something earlier when you talked about the people
that you met at the White House and they told their story. I don’t think, if we think about
the Bible and how stories are the method of teaching in that,
as well as other religions, stories are very powerful. I don’t think
the public understands the insurance issues. I have to say with
my advanced degrees, I did not understand
lifetime limits. Truthfully, I mean, because
I never worried about that. And I think that whoever
is designing, you know, educational material, they
do need to make it simple, but someone needs to
tell a story with that, how that affects them. No one has a conception of
what cancer treatments cost. And if there’s one thing that I
believe that we need to work on, is we need to bring in
the discussion of how could we get a control. Some control, I know that’s not
a good word in this environment, but how can we get our hands
around the costs of treatment, where they just aren’t going
up and up all the time. I know all the research
costs and all that. So I guess what I’m
saying 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 get
ahead of the media. Because oftentimes I don’t
think the media — I know the media doesn’t — I’m
sorry, you’re out there. (laughter) I don’t always think that
the media delivers the story correctly, and it’s
oftentimes just because they haven’t walked it. I mean, when you hear someone
famous who suddenly got cancer, they’re telling a story and I’m
sitting at home and saying — I could have said that. But no one’s going
to listen to Shirley. But I mean, if it’s
someone else out there, so use the administration’s
friends to get the word out. I’d love to sit with, you know,
people like President Clinton whose mother had cancer, and
he could tell a great story. And there’s all types of people
in the movie industry who’ve lost mothers to breast cancer. I think, I know
people would listen. After they looked them
over, they would listen. (laughter) Sheila Prindiville:
I just wanted to add to —
something I’d like to actually hear more about. In addition to how do we get
out the message about what works already, in addition, you know,
patients in the clinical trial system are really the
cornerstone of making advances, and one of the things that we
don’t do so well is actually getting clinical trials out
into some of the underserved and minority communities. So any, you know, thoughts
and best practices. I know some of you actually
work in those areas, we’d love to hear
along those lines. Thelma Jones:
I wanted to say, because
as we look at research, because I am so pleased that the
American Cancer Society’s really championing that, and
it’s from a biological, molecular standpoint
and all that. And sometimes I think some of
our research should be going more into physiological,
psychological kind of things, because there is a huge, huge
element of fear that I feel that society does not understand and
embrace when it comes to cancer. I am finding that one of the
reasons women are not going to seek treatment or to be
screened is because it’s fear of the unknown. And this is not, I am not just
seeing this in my work as a community navigator
with Smith Center. Remember earlier I said I
worked at the World Bank? I spent 33 years there, and I am
actively involved with the World Bank IMF Breast
Cancer Support Group, and these are highly
intelligent, well-read women, but some of them have fear also. So even if we have all
other things equal, if we haven’t reached that
first element to get them there, we’re still beating our
heads against the wall. Speaker:
I’d just like to add that you
wanted to know about getting the message out. I think it really helps not
only tell the story but to have that story come from a survivor. Because we understand
what they’re feeling, we’re understanding
the fear they have, because we’ve all had
it, so we can share that. It is important for us as
survivors and as advocates to be educated, because there are a
lot of things that come out in the media that are just wrong. We see them on Facebook, we
get calls from our friends, and that’s very important. But I think it’s also important
to remember the Shiras. I won’t forget you. And the people that
have lost loved ones, and to remember that we have
a responsibility to them. I want to say to her, we have
something for you so that you will not get breast cancer. That’s what I want to say. I have a friend who passed
away two months before I was diagnosed. Her daughter’s growing
up without a mother. I can’t forget that. So I am trying to work really
hard with the National Breast Cancer Coalition on
their Deadline 2020 to stop this disease. We need to do more and
get that message out. Speaker:
To answer your question, we
need, as health care providers, to work more closely together,
and especially with cuts in funding and the difficulty
in getting insurance reimbursements and so forth. It’s difficult for
hospitals everywhere. And so positions are being cut. What we need to do is to put
all of our resources together, work together, get the word out. Form training programs,
educate our communities, and stop fighting and
work as a community. And we can make a difference. And I know at Southern Maine
Medical Center we started a focus the group, and we listened
to what women diagnosed with breast cancer needed
and wanted from us, and it’s made a huge difference
in how we deliver our care. And I believe that that’s
what we need to do more of. Speaker:
And I’m going to go into
research and I’m going to carry that theme forward, because
the concept of collaboration, of changing the conversation so
that we’re all working together and not secretly in our
own silos is so key. I will give you — I wish I
could remember the numbers because I gave a speech on this,
about the number of studies that have been done — something like
33,000 studies done in one year, and yet I spoke to the head of
a very large pharma company, and this is something we all
need to know: He said that in his job he needs to look
at all the research and begin to learn, you
know, decide which — which is promising enough
to throw out the billions of dollars to follow it through. He said 90 percent of the
studies were not reproducible. In other words, all this
research is out there, and he said sometimes he’d call
the researcher and this is a big pharma company, they’d
call up and the researcher wouldn’t talk to them. Or one finally talked to
him 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 we
all have to be a lot smarter in how we’re using these
diminishing dollars that’s the reality of this world today. And we need to be able to
pull together, collaborate, publish all research, what
fails as well as what succeeds. And maybe then we’ll
begin to get a little bit more for our money. Speaker:
I’d like to just mention when
you were talking about outreach, you know, Chicago has, sadly,
in Medicare the lowest screening mammography rate in the country. And in fact for African-American
women it’s even lower than the already very low
Medicare screening rate, which is about 50.1 percent. I think that people react to
messages when the messenger is familiar and respected, which is
why I would be very eager if the First Grandma would do some PSAs
in Chicago because we really need them, or any of the
other first anybodies — (laughter) — doing some Chicago PSAs. Speaker:
If I can just respond to the
question on the clinical trials because I do some
work in that area. As you know, it’s a very complex
issue, there’s no easy answers. But, you know, it does get down
to that engagement between the provider, the physician
and the patient. But many times the process is
quite accelerated in the way health care is done today. So you have surgical
intervention or you have some sort of diagnosis and then you
have an appointment and you start your chemotherapy, and
to give patients — to be respectful to patients, to
give them time to understand treatment options, help them
participate in that decision as an informed decisionmaker. Much of the system and
process 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, current
efforts going on through HHS to make some changes in the common
role to try to simplify the consense, but yet
meet requirements. I think that is
very, very important. Reduce some of the delays. But we do not have any
standardized way or standards to say we need patient
interpretable materials prepared for every trial in
a consistent manner. And not that you substitute
in the legal informed consent process, in that those that
are culturally sensitive, at least that there are, is some
level of standardization there. And we also don’t have good
methods to compare it to standard — what you
call standard of care. If a provider’s
going to do that, they have to reinvent the wheel. So how do you help someone make
that decision which may be the best care for them is to
participate in a trial because there’s no tool sets, back
to education and support. So that’s kind of a — I
guess I’ve talked too long. That was a passion for me. I’ve worked on IRBs and
reviewed this stuff since 2004, and people do the best job
they can, and it’s improved, but yet it’s just kind of a
fractured process without the level of standards and
documentation that I think could help everyone in that process. Speaker:
This, in terms of sort of the
message getting out there and collaboration, I think one of
the things that might be really helpful is that when we do put
the message out there that it’s clear and concise and that
it doesn’t take us backwards. Like for instance when we put
out all the information for recommendations for new
screening guidelines, it didn’t help our cause at all. So I just had to go
public in saying that, not that we’ve been
dancing around it, but I think it’s the ultimate
collaboration, partnership, communication, reaching
consensus and wanting to do the best for the best, for the
most number of people by the appropriate messaging. Speaker:
Tying all this together in
the discussion about NIH, what comes to mind when it
talks about clinical trials is a couple of things. Fear, and then you’re talking
about making it simplistic. When I — I know that when
I was diagnosed initially, of course you start kind of that
rat in a maze phase where you’re just going to do pretty much
whatever your doctor’s going to tell you. I really didn’t know at that
point about the rights that I had as a patient. I didn’t really understand as
clearly at that moment that this was my journey. And when I metastasized, that’s
when I really began — I mean I keep this ribbon on my car, it’s
a gigantic ribbon that covers the whole side of my car
and on the wheel it says, “Hope always.” And I wanted to remind myself
that 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’s
the point that I took control. But I really didn’t know
where to go to talk about, with the clinical trials. I really didn’t know I
could go on a website and be totally confused. But I also found
that my providers, my nurses — not
just my doctors, but even my nurses
weren’t that informed. And so there’s a piece now that
I really try — I’ll try to language this the best I can —
in this journey we have a right to have quality of life as
we move through metastasis, not just or even at the
initial point of diagnosis. And that’s why, I’m really
underscoring what’s been said, is that we really need to be
able to simplify the choices that are out there. We need to be able to
take away the fear. Because really what happens
at the point of diagnosis, right now, even despite all
the wonderful work that our organizations are doing, there
are too many women that get diagnosed and just give over
their life because they think that someone else
has the answer. And it really does come back,
I’m just passionate in trying to underscore what’s been said. We really need to actually
simplify this so that women know that they have a choice, that
they can have quality of life. Speaker:
So, and I’d like to say that it
is — while it is important to simplify, you can’t really
communicate about breast cancer in a simple way. I mean, breast cancer is
many 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 incidence
of stage III and IV cancers as there was 20 years ago. So we haven’t made
an impact there. We’re still seeing the
same amount of incidence, and those are the women, those
are the cancers that people have the longer rates of living
with metastases with, and those are the
women that die. And so, you know, early
detection saves lives is not clearly the answer for the women
who are going to be diagnosed with stage III and IV cancers. And it’s very difficult for
those women to hear early detection saves lives because
they do blame themselves. And that’s unacceptable. It is unacceptable that women
have to die of this disease, and the only way we’re going to
get there is if we really all work together as a community
to focus our resources and encourage everybody to really
work together and, you know, interdisciplinary collaboration. Speaker:
I just want to say
really quickly, I think the respect of a
patient from the very on-go, from the very get-go
with a doctor, to respect that you are the
one fighting this disease, you are the one being
told that you have cancer, you are the one that lives with
this from that moment until the rest of your life, whether you
think about it constantly or you think about it
every now and then. So I went in, my choices were
a little bit different than some people’s. I chose natural every time. I’ve also been very,
very fortunate. Mine might have been caught
early because of early detection, because
of the preventive, and because God’s just let
me stay for this, I will say. I have many friends that have
made other choices and had the same journey I had with the same
outcome 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 at
one point, look, it’s my body, and this is me. Don’t look down at me because
I’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 every
single person here can say when we make these choices, because
we want all the choices that we can have. We know our bodies
better than anybody else. And yes, we’re taking a chance
no matter what choice we make. It is the most agonizing
decision that anybody will make, I don’t care what
decision you make. It is agonizing to
go through that. And once you get through that
and you decide which way you want to go, you have to
go with it 100 percent. But they have to have
that respect for you, and let you open yourself
up to get that education. We can’t be ignorant when we’re
deciding whether we want to live or die and what we’re going
to do with our bodies. So that’s why I’m saying for
me, I want to give hope to other people. I want them to be strong enough
when they get past that fear a little bit that they can go
and they can open their doors, they know where to go, and it
can help build up that courage instead of — instead of
magnify and amplify that fear that is there. So just, just understand, it’s
a very hard position to be in. Not that hard things
don’t happen to everybody. We’re not different that
way, it happens to everybody. This is what we’ve been dealt. But respect us and respect the
patient when they come in and give them the choices. Speaker:
Thank you. So we just, we’re
about out of time. I want to make sure, there are a
couple of you who haven’t had a chance to speak yet. You don’t have to, but if
there’s — but if you do and you want an opportunity, I want to
make sure that we don’t end the panel with that, without a
couple of you who have not said anything to have a chance. Speaker:
Just a comment with
regards to clinical trials. Part of it is we, a woman, when
she’s first told she has cancer, it’s usually a primary care
physician that has identified, and they don’t have a lot of
information about what are the next steps. So I think the early education
and reaching out to them. And also to educate
ahead of time. The worst time you want to hear
about a clinical trial is when you’ve received a
diagnosis about cancer. So we need early education, and
to 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 I
don’t think anyone has brought up, and again, being in
health care, it concerns me, and that is drug shortages. So I think we need some
help from you on that. Because as I’ve been
visiting hospitals, I’ve been talking
with pharmacists, I’ve been talking
with physicians, and they’re extremely
concerned about shortages, particularly in the area
of chemotherapy drugs. And I know if it’s, if it’s me,
because it could be tomorrow, or my sister or my mother, I
would want to know that the physicians and the people who
are educated about breast cancer are making a decision about my
treatment based on my condition, my tumor, and what is best for
me rather than what they can get from a pharmaceutical company. And I think it’s just
the tip of the iceberg, and providers are
extremely concerned. So any help with
the FDA would be — Speaker:
Well, that is a very good point
and 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 for
being here with us, for sharing with
us your stories, and your wisdom and knowledge. I hope that this is the first
of many, many conversations. We are here, you know,
OPE is here, you know, to be that connection for
you to the administration. It’s something we want
your involvement in. And all of your colleagues at
the grassroots level as well. So again, you know, we very
much, you know, salute you, and thank you for everything
that you do every day, and, you know, I want to communicate
on behalf of the President and the First Lady, you know,
our great admiration for you, for each and every one of
you, and the work that you do, and the strength and the
inspiration that you give to all of us. So thank you very much. (applause) Speaker:
I just want to say one more
quick thanks to Shira Sternberg, who really organized a lot
of this and put it together. (applause) And thanks to Tina and Myra and
Dr. Prindiville for doing this, and of course, thanks
to all our Champions. The one thing I will say, and
a couple of you touched on it a little bit about the message
getting out and the message not getting out, and we want all of
you here today and all of you champions to make sure you’re
using this platform and you’re using your opportunity here
today as a chance to get the message out about this fight. So thank you all for
being here today. Don’t hesitate to talk
about this when you go home. Tell your friends, blog
about it, write about it, put it on your Facebook wall. We love it all. But really, thank you
to all our Champions, we really appreciate
your being here. (applause)

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