[MUSIC PLAYING]
LAURA MILLER: Thanks so
much, everyone, for coming.
I'm Laura Miller,
a fellow Googler.
And I feel honored and blessed
to be standing here today
introducing two
personal heroes of mine
and sharing their brilliant
minds with my Google family.
As many of know, I was
diagnosed exactly one year ago
with breast cancer
and fortunately,
labeled no evidence of
disease this past July.
After--
[CHEERING]
Thank you.
[APPLAUSE]
After my diagnosis, I
received an outpouring
of love and support
from many Googlers,
quite a few in Google
Chicago, so thank you.
And unfortunately, I
received too many notes
saying that they had faced a
similar diagnosis as myself
not long before me.
So we have quite a
big Google family here
that is facing this issue.
And my good health today and
the good health of many Googlers
could be attributed
directly to individuals
who are pioneering, driving
change, and innovating
in the breast cancer landscape,
in particular, the two
that you'll hear from today.
So Fran Visco is amazing.
She is 25-year breast cancer
survivor and the president
of the National Breast
Cancer Coalition
which is an organization not
all unlike Google in the sense
that they're willing
to make big bets,
and they care first and
foremost about the population
that they serve.
She served three terms
as one of three members
of President Clinton's Cancer
Council back in the '90s.
She co-chaired the National
Action Plan on Breast Cancer.
And she was the first consumer
to chair the Integration
Panel of the Department of
Defense Peer-Reviewed Breast
Cancer Research Program.
She is a member of the board
of directors of Translational
Research and Oncology, among
many other national boards.
And she is a world-renowned
thought leader
and a breast cancer landscape.
Alana Welm is also incredible.
She is an associate professor
in the Department of Oncological
Sciences at the
University of Utah,
an investigator at the
Huntsman Cancer Institute,
and co-leader of the Cell
Response and Regulation Program
at Huntsman Cancer Institute.
Her lab focuses on
breast cancer metastases,
which unfortunately,
has no cure today.
And she's made
groundbreaking discoveries
that are widely-renowned in
the breast cancer community
and beyond.
Her research developed
lead to new ways
to treat and prevent
breast cancer metastases,
which she'll talk
more about today.
So without further ado, I want
to give a warm Google welcome
to Fran Visco.
[APPLAUSE]
FRAN VISCO: Thank you.
Thank you.
Sorry.
Thanks very much, everyone.
I'm thrilled to be
here to talk to you
about breast cancer,
how we can end it,
and the National Breast
Cancer Coalition.
So our mission is to
end breast cancer,
and we do have a
strategic approach
to achieving that mission.
But we all have a role to
play in ending breast cancer,
and we have to use every
possible avenue to get there.
So the National Breast
Cancer Coalition,
which I have the honor
of being president of,
was formed in 1991 as
a coalition of groups
from around the country.
And we have two arms.
We have an advocacy arm,
a grassroots advocacy
arm that sets the legislative
and public policy agenda
and then works to get
it enacted into law.
And we have a program arm that
complements the public policy
work, and I'll talk a bit about
the programs that we have.
And our goal, really, is
to change all the systems
in breast cancer.
We weren't formed
to raise awareness.
We do not do direct services.
Many of our member
organizations do.
We are really about
system change.
And again, our mission
is to end breast cancer.
So I'll give you an example of
the advocacy work that we do,
funding for research,
expanding access to care.
Funding for research
is, as we know,
vital to ending this disease.
And the federal government
is where the major research
funding comes from.
We do a lot of
community fundraising,
or many of our groups do,
raising money for research
in their communities.
And that is important.
But the hundreds of millions of
dollars, year in and year out,
that are required for
high-level biomedical research
comes from the
federal government.
Expanding access to care--
we all know, and we know we've
been a part of this battle very
much most recently--
that we can find the
answers to breast cancer.
We can know how to prevent
it and how to cure it.
But we will not have
ended breast cancer
unless everyone everywhere has
access to those interventions.
And so a main
priority of NBCC is
to make certain that
the policies are
in place that will expand
access to the right health care.
We're involved in
education and training.
We educate and train
advocates, lay advocates
around the country and
even around the world,
to understand these
issues and to understand
the language, the concepts,
and process of science
so that they can collaborate, so
that they can sit at the table
and help decide how research
funds should be spent
and also what research
should happen.
And Alana will speak
a bit more about that.
But we're about
critical advocacy.
We're about critical analysis
and analytical, informed
approach to what advocacy should
be, not a knee-jerk reaction
to issues in breast cancer.
And we are very much about
the importance of leadership
from the lay public, from
educated and trained advocates
with a constituency.
They should be leading all
efforts in breast cancer.
So let's talk about US
progress in breast cancer,
because I think we
all think-- the public
believes that we've made
such strides in breast cancer
and that we're very close
to figuring this out.
But the numbers tell a
very different story.
So in 2017, in the United
States alone, over 300,000 women
will be diagnosed
with breast cancer.
And 2,600 men will also
receive that diagnosis.
Now, we know there are two
main types of breast cancer.
There's invasive breast
cancer, and there's
something called in situ--
ductal carcinoma in situ.
And that really isn't cancer.
That's a condition where we have
abnormal cells in breast ducts.
And it has not
invaded into tissue.
That is a phenomenon
of mammography.
Before mammography
screening, we didn't
know there was such
a thing about DCIS.
And DCIS is a very controversial
issue in breast cancer,
because we really
don't know if any of it
will progress to
invasive breast cancer
and if any of that
invasive-- which of that
invasive breast cancer will
progress to become lethal.
We'll talk more
about that later.
But this year,
breast cancer will
take the lives of
over 40,000 women
and 460 men in
this country alone.
And I'm going to show you a
graph in a little while that
will show you that there is
no change in lethal disease
and diagnosis since 1978--
no change in diagnosis
of lethal diagnosis.
And there is no
acceleration in the rate
of decrease of mortality.
You may have heard
that recently--
the number 39%
reduction in mortality
in breast cancer death rate.
Well, that is a correct
number, but it is not a number
that tells the whole story.
It's a relative number.
The decrease in mortality
has been 1.9% a year
for a number of years now--
1.9%, 1.9%, 1.9%.
You add that up, the relative
decrease is about 39%.
But there's no
acceleration in the rate
of decrease, which there
would be if we were continuing
to make progress.
But the global progress
is even worse story.
1.67 million new
breast cancer cases
will be diagnosed in women.
And more than 500,000 women
worldwide died of breast cancer
in 2012, which is the
most up-to-date year
statistic that we have from
the World Health Organization.
But it is estimated
that in 2034--
2035, that number will be
more than 800,000 women
at the current rate of progress.
So this is really the
reality of breast cancer.
And I think it's important to
look at this particular graph.
You'll see breast
cancer incidence,
which is the diagnosis of
breast cancer and mortality,
across 40-plus countries.
The blue line is incidence.
And you will see that
in developed countries,
that line is very long.
The red bar is mortality.
And you will see
across 40 countries
not a significant
difference in mortality.
What does this tell us?
This tells us something about
the limitations of technology.
Because the blue
line-- the blue bar
tells you that is
how many women are
diagnosed because of screening.
So in developed countries, we
have mammography screening.
So you'll have many, many,
many more women diagnosed.
But the number of women who
are dying of breast cancer
does not change across
countries very much.
So that tells us that there
are significant limitations
in early detection.
This is, again, the
reality of breast cancer.
This is a graph that shows you
since 1978, actually, until--
actually, this goes now to 2015.
There has been no change
in the initial diagnosis
of lethal breast cancer.
And lethal breast cancer is
metastatic breast cancer.
Because if you were
diagnosed with breast cancer,
and it stays in your
breast, it won't kill you.
If it leaves your breast
and goes to another organ,
then it becomes lethal.
And we don't know how to
cure a lethal disease.
So initial diagnosis
of metastatic disease,
that statistic hasn't changed.
Breast cancer is
a political issue.
And what do I mean by that?
I mean by-- as I said, the
significant sustained funding,
year in and year,
out for research
comes from the
federal government.
And we can influence
what that number is.
And NBCC has influenced that.
How is the funding
spent, though?
Now we brought about over
3 billion new dollars
through our advocacy to the
worldwide scientific community
since 1992.
But it's not just about money.
Although, for many
individuals and organizations,
that's a goal in and of itself.
But we're also about, how
are those dollars spent?
And that's where
our project lead,
which is our education program,
Educating the Lay Public
in Science, that Laura
Miller, your fellow Googler,
took this past summer,
understanding language,
concepts, and process of
science so that you can sit
at the table, help decide what
a research agenda should look
like, and actually collaborate
with individual scientists--
and Alana will
speak to that also--
in designing research.
Access to care--
a political issue.
The Obamacare; the
Access to Care Act;
the FDA, the Food and
Drug Administrations,
those are all political
entities that we can influence.
And the quality of the care
that you get access to,
there are many
federal agencies that
actually have a great
deal of influence
over what that quality is.
And we can influence
those agencies.
And we educate and train
people and set an agenda
so that the influence is
the correct influence.
But I want to talk a little bit
about 21st century advocacy.
NBCC has had an
incredible impact
in breast cancer in terms of
funding for research, access
to care, changing
how research is done,
working with scientists.
And we've done a lot
of our work through--
in the early days,
petitions and organizing,
collecting 2.6 million
signatures standing on a street
corner stopping people,
going door to door,
delivering those signatures
to the president,
resulting in a national
action plan on breast cancer.
But that doesn't work anymore.
Because now, petitions
and signatures
are collected
through technology,
through social media.
And now, it is not that
difficult to get millions
of signatures on a
petition, and when
it's not that
difficult to do, it
doesn't have as much meaning.
So how can technology
help us in today's world
in organizing a meaningful and
influential grassroots network
and having our voices heard
in a way that sets us apart
from the crowd?
Well, we can certainly
use your help
in having that conversation
and figuring that out.
But I've laid out a
number of statistics
and a number of issues
in breast cancer
to tell you how we really
haven't made progress.
And as an organization, we
were very frustrated by that.
And in 2010, we decided
to do something about it.
We were going to launch
a deadline campaign,
that we will know how to
end breast cancer by 2020.
And we developed a
strategic approach
to that question, a
strategic plan of action
that is set out in
a blueprint that you
can see on our website.
And I won't go into
a lot of detail
about that, except to talk
about the research arm of that,
which is the Artemis Project.
And our focus here is--
we looked around the
world of breast cancer
and said, where is--
where are we on breast cancer?
What are the questions
that need to be answered
that aren't being addressed?
And there were two.
One is primary prevention.
How do we stop women and men
from getting breast cancer
to begin with?
And the second is this
idea of metastasis
and the spread of breast
cancer outside the breast.
We know if it's in your breast
and doesn't go anywhere,
you'll live.
And we know if it goes
to an organ, you won't.
So what's happening in between?
No one was really
looking at that.
They were looking at what to
do once it's in that organ.
But how does it get there?
How can we stop it?
And so those are the two
areas that we decided
to focus on with
the Artemis Project
as part of our
deadline campaign.
The Artemis Project is
a model for leadership.
It is advocate-led, incredible
collaboration with scientists
from across the country
and other countries,
different focus.
The one thing we ask of
the scientists we invite
and the advocates is
that you're innovative.
You know how to be disruptive.
You're a critical thinker.
You are brave.
You are willing to go
against the status quo.
And you want to
come to the table
and work with patients
to make a difference.
And so we have an
infrastructure that we've
created to launch and
maintain the Artemis Project,
and it has been
incredibly successful.
But it would not be
successful without someone
like Alana Whelm, who
is a scientist, who
meets all of those criteria,
and who comes to the table
willingly to work with
advocates to really achieve
the goal of ending
breast cancer.
And so I'll turn this
over now to Alana.
Thank you.
[APPLAUSE]
ALANA WELM: Hello, everyone.
I would like to echo Fran in
thanking you for having us
here today.
My job today is
to tell you where
we are in metastatic
cancer research
and in breast cancer research.
I want to cover, again,
a little bit more
on the real issues
in breast cancer,
update you on research
and therapeutic advances,
and then really try to convey
this urgent need we have
for new and
innovative approaches
that I think can be best
served through community
engagement in research.
So I'll start by
another statistic.
And Fran touched on this
already to some degree.
So breast cancer awareness
has been a huge campaign
over the last few decades.
And it's been successful.
Breast cancer awareness is
not really the issue anymore.
We're doing more
mammograms than ever.
There's more early
diagnoses than ever.
And yet, as Fran told you, we're
not making the kind of progress
we need to end this disease.
And so the statistic you
can see on the screen
here is mortality.
This is the number of people
who die per population
since the mid-1970s until now.
And you can see we've
made some progress.
So there are better treatments.
There's new knowledge that
has led to better outcomes,
like reduction of hormone
replacement therapy use
has led to a decrease in
breast cancer mortality.
But you can see on
this slide two things.
One is we still have racial
disparities in breast cancer.
And you can see that the rate
of progress, as Fran mentioned,
is pretty steady.
So we're not making these
big, monumental advances
that we need to make
to end this disease.
At the end, we still have more
than 40,000 deaths per year
just in this country.
That means just in the US,
there will be five deaths
to breast cancer just in the
time that we're in this room
together.
So we really have an urgent need
to make substantial progress.
Now, why is it that we
haven't made progress?
So part of my job here today
is to try to convey to you
the complexity of breast cancer
and why it's so difficult.
So the reality is that 90%
or more of deaths from breast
cancer-- again, half a million
in the world every year--
are caused by metastasis.
That's when the disease
spreads outside of the breast
to other organs.
Breast cancer likes to
live in all different parts
of the body.
It starts in the bones--
that's the most common site--
but then spreads to other
organs and, unfortunately,
is incurable.
The trick though,
is that it's not
so easy as catching
the tumor early
and thereby preventing
metastasis, getting it
before it metastasizes.
Those 20% to 30% of breast
cancers that eventually
come back as metastatic
disease do so probably
before they're ever
diagnosed, probably when
the tumor is developing.
So there's a biology there
where early detection doesn't
seem to be helping whether
or not these tumors can
spread and recur later.
Breast cancer is not
a single disease.
That's another complexity.
We think of it as one
disease, but probably, there's
at least 15 different
types of breast cancer.
Every tumor is different.
Breast cancer is not
one of those cancer
that's driven by a
particular genetic signature.
The heterogeneity is
incredible, so that
makes it very difficult.
So as I mentioned, some of
these tumors, that 20% to 30%,
have the ability to metastasize
while they're forming,
before they're even diagnosed.
And then what happens is they
hide out in the body, typically
the bones.
But that's also an easy
place for us to look.
So our data is a bit skewed.
They hide out undetected.
There's no evidence of
disease, and then in some--
for some reason,
they can grow later.
And this can happen one year
later, three years later,
or even decades later.
So it's this of
clinical dormancy
that that really is a mystery.
Because we can't
see these cells.
We know nothing about
what makes them grow
or what makes them not grow.
Again, this is only 20%
to 30% of cases in which
these cancers come back.
When they grow, for some reason,
the disease is incurable.
And we don't know why.
We don't know why that is.
And so we really
need research that's
focused on how to treat these
metastases when they arise
and also how to
personalize therapy.
Because as I said, every
breast cancer is different.
So I think that the ability
to treat metastasis,
it has been a growing effort
in the breast cancer community.
Most clinical trials
that are started
are done in patients
with metastatic disease.
But we still need to
make a lot more progress.
I wanted to talk just
for a second about sort
of a state of the art
in personalized therapy,
where we can actually now take
patients' tumors as they're
harvested at surgery and
grow those in different model
systems in the lab in
order to actually test
the genetics of the
tumor, as well as
what drugs it might respond to.
So this would give a
more personalized view
of the susceptibilities
of those cancers
to, hopefully, direct therapy.
The challenge is
that this takes time.
And once a tumor is metastatic,
sometimes the disease
progresses too quickly
to have that outcome.
The reason I'm
telling you about this
is because I wanted to
give you a little bit
of a personal story,
because this just gives you
a view of how metastatic breast
cancer most typically arises.
And it's too typical.
So I'm going to tell
you about Mandi.
Mandi was a young woman
diagnosed with breast cancer
at age 29.
She had a very small tumor.
It expressed the
estrogen receptor,
so it was the good kind to have.
Because it means it could be
treated with hormone therapy.
She had surgery.
She had radiation, chemotherapy,
all the usual breast cancer
treatment, even
though no one knew
if her disease would come back.
So those are all
just-in-case measures,
because again, we don't
know who are the 20% to 30%
whose tumors might
come back later.
She endured that therapy,
and she was a survivor.
Unfortunately, three
years later, her disease
did recur, initially in the
bones, and then the lungs.
But now, it had changed, so it
had lost the estrogen receptor.
But luckily, it had turned
on another gene, called
HER2, which made it susceptible
to another very famous
treatment, called Herceptin.
And that worked
for a little while,
but then disease started
popping up in other places,
like the brain, the
ovaries, and other places.
Eventually, it lost the
HER2, so the Herceptin
was no longer effective.
The whole point of this is that
the cancers are heterogeneous.
They're changing.
And we can't see them.
So we don't know how to
treat these metastatic cases.
Unfortunately, her
disease progressed
before we could get her on any
other experimental therapies.
And she couldn't
tolerate more toxicities.
These therapies can
be very, very toxic.
And unfortunately, she
passed away earlier this year
at the age of 36.
So Mandi used to
say to me, I feel
like I'm playing whack-a-mole.
She used to say that, the
therapies that are given
are just-- they do work.
They're FDA-approved.
But they're trial and error.
So another tumor pops
up, and then we treat it.
And then another tumor
pops up, and we treat it.
But it's just like whack-a-mole.
And this made me start
thinking about this.
And you know the
whack-a-mole game.
But really, this is so much
more complex, where you have--
essentially, this is a picture
of a 3D whack-a-mole game,
where these moles
are popping up,
and you're trying to whack them.
But you have to be
careful that you're not
killing the host tissue as
well with these toxicities.
So that's something
that I think,
it's always a balance between
finding the best therapy
and trying to not
have as much toxicity.
So why or why haven't we made
enough progress against deaths
from breast cancer?
To date, I'd say the
main focus on research
has really been on that primary
tumor that's in the breast.
The reason?
It's easy to get.
We can't do much research
in humans, obviously.
And these metastases
that arise in patients
are typically very, very
difficult to obtain.
So in lieu of that,
we have to try
to develop sophisticated
model systems,
like the one I told
you about before where
we grow patients' tumors in
the lab to try to figure out
what drugs might work.
And it's not that there
has been no progress.
New therapies have
been approved.
We have new CDK4/6
inhibitors, and there's
excitement about immunotherapy.
It's just that each
of those therapies
typically helps
for a little while.
But then, ultimately,
there's resistance,
and it doesn't extend life
as long as we would like.
So really, to prevent
death from breast cancer,
we have to figure out
how to treat metastasis
and how to prevent it from ever
happening in the first place
or, as Fran
mentioned, of course,
prevent breast cancer
from arising at all, even
in the breast.
So there is a fair amount of
excitement about immunotherapy.
And I get asked
about this a lot,
so I thought I'd just
give you the overview.
That the concept
here is that you
could use your immune
system and activate it
so that it would hunt out
those cancer cells that
are hiding in the body.
And that's really
attractive, because then,
we don't have to know
anything about what's
driving those tumors.
What is the genetic propensity?
Or which ones are
going to grow where?
What targeted therapy
should we use?
Just think of any
virus that you've had.
You can't see that.
You don't know what it is.
You know you're sick.
But then, you can actually--
your immune system
will target that virus and
kill it, and you get better.
So immunotherapy has
had amazing advances
in diseases like melanoma,
in metastatic melanoma,
and certain types
of lung cancers.
It's not working very
well yet in breast cancer.
The response rates are
still pretty small,
around 10% to 20%, with
eventual progression
in most of those cases.
But because of the
excitement, there
are thousands and thousands
of clinical trials now
that are testing immunotherapies
and often combining
those with other therapies
that already exist.
So we really need more research.
It's really important
that we understand
the biology of how to make these
combinations so that we're not
just combining therapies,
essentially, blindly
and causing unnecessary
toxicities in order--
for the hope to have
better outcomes.
The attractive
thing if this works,
though, is that immunotherapy,
such as a vaccine, for example,
could be applied to either treat
metastatic disease, prevent
those metastatic cells
from growing out,
or primary prevention.
So that brings me back
to the Artemis Project
that Fran mentioned.
She emphasized that
this really was
an advocate-driven initiative.
So this is breast cancer
patients and survivors
have gotten together and said,
here's the urgent issues,
and asked the scientists
and clinicians to help work
toward this problem.
I have found it just incredibly
transformative, actually,
in my science to be
involved in this project,
so I'm very happy
to be involved.
As Fran mentioned,
there's two key areas.
I thought I'd just give you
a little tidbit as to where
we're going in the scientific
direction of those areas.
The first area is to
prevent breast cancer
from-- in the first place,
so primary prevention.
And the group has really come
up with a vaccine strategy
to try to do that, where we
would be immunizing against six
particular proteins
that get turned on
only when cancer cell--
only when breast cells
are turning into cancer.
The idea is that
your immune system
would be primed to recognize
expression of those proteins
and kill those cancer
cells before they
can form an actual tumor.
Initially, this is intended
for high-risk individuals.
There are people
who know they have
a very high risk of developing
breast cancer because
of the family
history, for example.
The other area,
as Fran, mentioned
is preventing metastasis.
If we can prevent
cancers from coming back
outside of the breast, we
would essentially prevent death
from breast cancer.
So the goal here is
to try to figure out,
how do we know who
has dormant cells?
As I said, only
20% to 30% of cases
have these cells
that have spread
and will eventually recur.
But we do not know how to
identify who those people are.
We don't know how to treat
something that we can't see.
We can't detect it.
We can't measure it.
We don't know anything about it.
So how can we possibly treat it?
The idea would be to eliminate
these dormant cells before they
become incurable,
after they've grown,
or to find ways to
keep the cells dormant.
If somebody lives with dormant
cancer cells in their bone
marrow their whole
life, so be it.
That could be a
perfectly good outcome.
Of course, these two efforts
in the Artemis Project
are orchestrated alongside
all the usual scientific
and clinical research that's
going on in breast cancer.
As Fran mentioned, we
have to take all avenues.
We have to continue to figure
out how to treat breast cancer,
how to treat metastatic disease.
But we think taking these
two approaches could
have major long-term
impact in the disease.
So the big question,
then, is how
do we know who has
the dormant cells?
And how do we treat something
we can't see or measure?
And the challenge
really is that we
don't have these kinds of
samples to be able to look at.
So this is where I think
advocate engagement
and community engagement can
be really transformative.
This is something
we've been thinking
a lot about in the Artemis
Project, where we really
have to re-prioritize
the agenda and focus
on the urgency of the problem.
If we really need to understand
this particular question,
we have to figure
out a way to do it.
And so we have to
think outside the box.
And I think we need to
engage our whole community,
because we've all been
touched by breast cancer
in some way or another.
We all are responsible
for ending this disease.
So in the Artemis
Project, one example
is we identified the
questions related
to how to prevent metastasis.
Who has the dormant cells
that are going to grow?
And what do they
look like so that we
can try to treat those
or keep them dormant?
We work together through
a series of workshops
and think-tanks, where
we have breast cancer
advocates and patients
working directly
alongside the researchers
and scientists
and really designed
approaches that we think
could answer these
questions and could give us
the key to what is the
transformative therapy
or therapies that could
prevent metastasis.
And now, really, our job
is to try to execute.
Of course, that's
easier said than done.
We have-- just as
example, we have an idea
for a really global
patient-advocate driven
network or partnership,
where we could potentially
try to engage people to acquire
those specimens that are needed
to look at those dormant cells
and to try to determine what
might be their Achilles heel
that we could target in order
to prevent them from ever
growing or to kill them.
I think we need
a unified effort.
Everyone, as I said, is
affected by breast cancer.
But we all need to be invested.
So there are a lot
of different groups.
Some focus on awareness.
Some focus on early detection.
Some focus on access to care or
disparities in breast cancer.
Some want to focus just on,
how do we treat metastasis?
Some want to focus on, how
do we prevent breast cancer?
We all need to work
together so that we
can have a unified
effort to this problem.
We need to use every
avenue, as Fran said.
And I also want to emphasize
it's not as though we
aren't making any progress.
We are learning a lot about
the biology of breast cancer.
But it's incremental.
It's too slow.
We understand more
about the genetics.
We understand more about
the tumor microenvironment.
But we really need to just
all come together and try
to figure out a new approach to
make this more transformative.
And I think these innovative
partnerships between advocates,
researchers, clinicians,
and the community
is really the key,
the way to go.
We need to think big,
and we need to be bold.
The Deadline Campaign
is very bold.
It was heavily criticized
for being so bold,
but this is what we have to do.
If we don't challenge
ourselves to do this,
we won't make the
progress we need.
And people will keep
dying of this disease.
I would say that we really need
to stop thinking that we're
limited by what we can do.
Well, I can't study
those dormant cells,
because I can't get the samples.
Or I don't know
what they look like.
We have to start
just figuring out
how to do what we can't do
yet and make it possible.
So I think that being able
to engage in the community
and put our heads together,
very innovative people,
such as Googlers, might be able
to help us with that problem.
So what can you do?
Working with the National
Breast Cancer Coalition
has been, as I said,
transformative for me.
I'm very passionate
about this work.
I think that the mission to
end breast cancer is spot on.
And this is the
way to get it done.
I think we need to use
innovation and think about,
how could technology
help us in this issue?
How can we organize
this grassroots movement
and get people
involved in science
and really tackle this problem?
You can get educated
about breast cancer.
Fran talked about the
Project LEAD program
that the NBCC holds.
It's an excellent program.
And just think about how
to join the collaboration
with researchers and advocates,
such as in the Artemis Project,
whether you're a
scientist or you just
want to advocate for
the end of this disease.
We have the website there for
Breast Cancer Deadline 2020.
And I think we're prepared
to take questions,
if there are any.
[APPLAUSE]
AUDIENCE: My question is
on the prevention side.
I read a lot about
environmental causes,
and it's really hard for
me to parse out what's real
or what's fake-- fake
news, fake science.
So I'd love to hear
a little bit from you
both in terms of the
environmental potential impacts
or anything that's not
potentially part of this.
FRAN VISCO: So the one thing
we know environmentally
that causes breast cancer
is radiation, but radiation
at a certain level.
So for example, individuals
who had a type of lymphoma
when they were young and
had whole body radiation
and heavy doses
of radiation, they
are very likely to be
diagnosed with breast cancer
later in life.
In terms of the external
environment chemicals and that,
we really don't have
high-level evidence
that there is a
direct relationship
between exposure to
an environmental toxin
and getting breast cancer.
All of the information
that we have
is pretty low-level evidence.
They're weak correlations,
except maybe DDT was something
that had some strong evidence.
So what NBCC has tried
to do in the past,
unfortunately, unsuccessfully,
was develop public policy
that we would have
a grant program that
would create a collaboration
between institutions
and community groups
across the country
that, together, they could
develop a strategic approach
to addressing these questions.
Because too often,
we've seen people think,
well, it's pesticides.
And then you run down
that road before you
have the evidence that that's
actually the right road
to take.
And so we want to be more
analytical and critical
about it, and make
sure that we're using
our resources in the right way.
So what do we know?
And it's not much.
But again, there is no
high-level strong evidence
of a direct connection between
environmental toxins and breast
cancer.
AUDIENCE: Thank you both.
This was really
interesting and motivating.
You talked about how
the internet has changed
the impact of petitions
and gathering signatures
and really, the
ability for that to be
leveraged in conversation.
Can you also talk a
little bit about how
the internet has
changed your ability
to get sustained funding?
I think about GoFundMe and
really like raising money
for individuals in their moment
of need versus organizations
or research.
Can you talk a little
bit about that?
FRAN VISCO: Well, we
haven't figured out a way
to use the internet and social
media to fund our organization.
And I think others would
agree with this, the people
that I speak to in other
groups significantly.
I think, yes, if
there's a disaster,
like the earthquake in Haiti
or a flood in Louisiana,
people respond to the
disaster and give money.
If there is an individual,
as you mentioned,
people respond, GoFundMe,
as an individual
with an emotional appeal.
But using the internet
and social media
to raise money for a complicated
organization with a pretty
complex agenda but a
pretty clear mission,
we haven't figured out
how to do that yet.
And I don't know anyone who
has, outside of the ice bucket
challenge.
Outside of that, I
haven't seen or heard
of anyone being successful.
And if you have ideas
about that, boy, would
I love to hear them.
ALANA WELM: I could also try
to add about research funding
as well.
So the kind of scale
of research funding
that we really need to
do the kinds of things
that I'm talking about, which
is really change the agenda
and try to do things
we've never done before,
that kind of
funding really needs
to come from larger sources,
like the federal government.
There are organizations who
do crowdsourcing campaigns.
And everything helps
to some degree,
but I think we're talking
about trying to really make
this a movement,
where we can all
come up with a strategy
that would be really big.
It's bigger than any
one research project
or another research project.
It's a movement that I think--
again, ideas of how we can use
technology to stimulate this
are welcome for sure.
FRAN VISCO: Well,
I think you also
see GoFundMe for an
individual scientist who
starts a GoFundMe page
to fund research--
their individual research.
And if you don't know,
it all sounds good.
So if you want to be careful
about what you invest in,
and if you want to invest
in something that's actually
going to make a difference,
it's not an easy thing to do.
Because you really
have to understand
the complexity of
the issues in order
to make that kind of decision.
And that's one of the things we
educate and train people to do.
AUDIENCE: I have a
couple questions.
I'll try to separate them out.
The first question
is, here at Google,
we hear a lot about machine
learning and the ability
to manipulate genes to use data,
to identify trends, and then
scale those learnings
more quickly than we've
done in the past.
I wondered if you could
comment on how, if at all,
that's affecting
your research today.
And then on the
flip side of that,
I also wanted to understand
when you were talking
about your strategies, how you
think about things like BRCA
and how you approach
individuals who already have
a predisposition, or
if you sort of see that
as a separate strategy that
is maybe over-utilized.
ALANA WELM: Well I can take
the first one, I think, first.
So with regard to
machine learning
and how that's
affecting research,
I think that, really, it
comes down to big data.
So I think we all
kind of thought
that the genetics of breast
cancer and many other cancers
would solve the problem.
We just had to sequence
a lot of tumors,
and then we would understand
what is the Achilles heel.
And we would develop
therapies for those things.
And what we learned
in breast cancer,
unfortunately, was very little.
What we learned is every
tumor is different.
There's not another
BRCA1 or BRCA2 gene.
But we still need to
try to integrate--
what that leads to is
really bigger data.
And maybe we have even more of
a need for machine learning.
Because what we know is we have
to integrate that genetic data
with also tumor microenvironment
data and maybe even lifestyle
data in order to really make
algorithms that could predict
not only whether the
disease will spread
and who needs to be
treated, but with what.
So it's an credibly
complex challenge.
We do have one research
project in my lab
where, as I mentioned, we try
to take personalized approaches
in growing patients'
tumors and testing drugs.
If we can do that on
a large enough scale--
I think we're past
the point of thinking
that we can do that
for any one individual,
because it just takes too long.
It's infeasible.
But if we can do this
for enough tumors,
then we can use machine
learning to try to figure out,
what are the features of
the tumors that respond
to a drug A and not drug B?
And then take that and apply
it, now, to the population.
So that's kind of where
we're going with that.
But breast cancer
so heterogeneous
that it's been much, much more
difficult than we ever thought.
FRAN VISCO: I think
one of the issues,
as advocates, we have
with the focus on data
and accumulating data,
that someone's used--
people use those
data prematurely.
So you see a trend or a
pattern in a population,
and you decide that's a place
to intervene before we really
understand if that trend
is meaningful in terms
of mortality or
lethality, or if it's just
going to add to
the over-diagnosis
and over-treatment that we have
now, which is not a good thing.
And we do a lot more of bad than
we do good for the population.
And so we're very
concerned about data
and how it's used well.
Just very quickly-- one of
the projects that we have is
called DNA Land.
And I know you all know about
23andMe and Ancestry.com,
et cetera.
So we're asking individuals,
who have had the sequencing done
from, by, through one
of those programs,
to send their data to
DNA Land and answer
a short clinical questionnaire
about breast cancer.
And we're going to try to see
how the data links to a risk--
higher risk of breast
cancer, but more importantly,
how it relates to
progression of breast cancer.
And the advocates are going
to control the database.
And we're going to make it
available to any scientists who
want it, if they meet
certain criteria.
So to that extent,
we thin data is
important as a research tool.
But as an intervention,
we're pretty concerned
about the abuse of
that information.
In terms of the
BRCA1 and BRCA2--
as an organization, we
don't focus on any one
type of breast cancer.
We focus on all breast cancer
and ending all breast cancer.
What we have done in the
area of BRCA1 and BRCA2 is
we work very hard to--
ALANA WELM: Does everyone
know what BRCA1 and BRCA2 is?
FRAN VISCO: So if
you don't, that
is a gene that was cloned
back in the '90s that puts you
at higher risk of
getting breast cancer--
significantly high risk
of getting breast cancer.
And it's linked
to family history.
And so that particular
gene, we work
in terms of making certain that
public policy, that everything
that's done in that
area, that there
is a connection to
genetic counseling,
that people understand the
importance of genetic--
that there's funding
for genetic counseling,
that there are enough
genetic cancers.
We work on clinical trials,
like the PARP inhibitor trials.
We work on those trials.
Clinical trials
is another project
that we do that I didn't
have time to go into.
And we work on telling
the world that if you
have a genetic test, and you
see that you're BRCA positive,
your choice right now is
to cut off healthy breasts.
And that is not a
choice anyone should
have to make in
order-- so this is not
a good-- it's not
like we have an answer
if you have a genetic test.
So we think, to a large extent,
that it is a research tool.
And we should
understand it as such.
So it's about
education, training,
making certain public
policies, and working
on treatment and interventions
for that population.
AUDIENCE: Hi, thank
you for coming in.
And thank you, Laura,
for setting this up.
My question is around kind
of maybe on the heels of Jen.
I was pretty surprised to
see the very slow movement
of progress to find a cure.
How often do all of
the different breast
cancer foundations
and associations get
together to-- obviously,
everybody's goal
is to save lives.
But is there a lot
of stepping on toes?
I don't understand how that--
the organization
world works when
there are so many that
are striving, it seems,
to the same goal.
So can you explain a
little bit on that?
FRAN VISCO: So it's interesting.
When I was diagnosed with breast
cancer, I was 39 years old.
I was a partner in a law
firm in Philadelphia.
My son was 14 months old.
I sat on nonprofit
boards, mostly
to do with women's issues.
And here, then, I come
into this whole new world,
the nonprofit at a different
level and breast cancer
advocacy.
And I was stunned
by the politics
of that world and
the competition
and the, what is
your real mission?
What is your real goal?
I was stunned by that.
So the reason why I got involved
in the beginning of NBCC
was because it is a
coalition of organizations.
Our board of directors
of our policy arm is--
they're representatives from
25 organizations that are
diverse in every way possible--
I mean, even
politically diverse.
They're really diverse.
Because we believe that if
we're going to change systems,
we have to have the very
diverse perspective that
is breast cancer.
It shouldn't be what five
middle class white women think
should happen in breast cancer.
It shouldn't be.
So so we do work
with a coalition
of very different organizations
to do this system change
type of work that we do.
In terms of funding, we
don't directly fund research.
But the organizations
that do, do come together
at least once a year
with the government
funders to look at portfolios
and see what's happening.
But in terms of
other issues, it's
impossible to really
work together,
because we really don't
all have the same goal.
And some organizations,
their goal
is very narrow
and very specific,
and it can be at odds
with a broader approach
to breast cancer.
So if your goal
is to make certain
that everyone has a mammogram,
that is not our goal.
Because we understand the
significant limitations
of that, and that is not
going to end breast cancer,
so we will not work together--
not that we choose not to.
We just don't have an
opportunity to work together.
But our coalition is a
very diverse coalition
of different organizations.
ALANA WELM: I would like to
see, on a much broader level,
more acknowledgment that
it's true we don't all
have the same goal--
immediate goal, right.
But I think we all want
to end breast cancer.
That's the overarching goal.
And I think that we could
use a more unified effort
in that area.
And I think if we could unify
around just the acknowledgment
that we have to
do better, then I
think that that would be a
step forward in progress.
LAURA MILLER: How
well-researched
has breast cancer been
studied in populations,
such as transgender
women, intersex folks,
or on men who have
(STUMBLING) gynecomastia?
ALANA WELM: Gynecomastia
LAURA MILLER: Gynecomastia.
ALANA WELM: Not well enough.
I think these are rare
cases of breast cancer.
Even male breast cancer,
which, as Fran pointed out,
is more common than most people
are aware, is understudied.
There are certain subtypes
of women's breast cancers
that are understudied.
And that really is because
breast cancer is not
one disease.
It's many, many
different diseases.
And so we don't have good
research representation
in these sort of
small subsets, in part
because there's probably
not as much funding
for that type of research.
And also, there's not
the samples available.
It would be very hard to
study even male breast
cancer, for example,
if your institution has
one case per year, for example.
So it is a challenge for sure.
AUDIENCE: What's different
in October 2017 than, say,
October 2015 in terms of your
challenges in getting funding
and unifying a coalition,
getting the support you need
from the federal government?
FRAN VISCO: OK, so two things.
Let me answer a
different question
first about what's different.
Because I was diagnosed in 1987.
If I were diagnosed today, I
would get the same treatment.
So not much has changed in terms
of interventions and therapies.
In terms of what's
different a year ago,
it's harder and harder and
more difficult to raise money.
Is that your question,
raising funding?
So it's much more difficult
to raise money, I think--
in large part because of the
proliferation of breast cancer
groups.
So when we started the
coalition 25 years ago,
there weren't very many groups.
There was one group
in Pennsylvania.
Now, I say, I wake up every
day, and there is at least 1,000
more.
And some people think
that's wonderful.
Some people think it's not.
Because it dilutes the
message, and it also
dilutes your ability
to really raise funds.
Because it's being spread
around so many different places.
And so for us, it's
become more and more
difficult to raise funding.
We do not take government money.
So none of our funding come
from the federal government.
We lobby for a government
appropriations that
go to the worldwide
scientific community,
and we have a seat at the
table in those federal programs
to help influence how
the funds are spent.
But none of that
money comes to us.
And I always say if it did, we
would have ended breast cancer
already, but it doesn't.
You
We have a limitation
on the amount of funds
we'll take from drug companies.
It's only 15% of our budget.
And we're very careful
how that money is used.
So it's very difficult,
because we have never
spent time marketing ourselves.
We don't spend time.
We don't spend
financial resources.
We've always just
focused on our mission.
Does that answer your question?
AUDIENCE: That's great.
ALANA WELM: On
the research side,
funding is just getting tighter
and tighter and tighter.
Right now at the National Cancer
Institute, it's around 10%
of grants that are
submitted get funded.
And it's not as though
90% are not worth doing.
We have a very important
breast cancer research program
at the Department of Defense.
It's also extremely
competitive to get funding.
And unfortunately, that program
this is really in jeopardy,
I think, right now.
So yeah, it's getting it's
getting harder and harder.
FRAN VISCO: I think, though, you
have to ask the question, what
should get funded?
It's not only 10% get funded.
Which of those
100% of proposals,
which should get funded?
Because it really
may be that we have,
maybe, too many scientists
and too many people
asking duplicative, old,
not important questions.
So what's the strategic
approach to figuring out
the right amount of funding,
looking at it really critically
and saying, what do we need
to do to end breast cancer?
Who is doing it?
Who can do it?
How much money does that take?
And we don't ask the question
that Way I mean, we do, but.
AUDIENCE: And how do we
[INAUDIBLE] those organizations
to take the risk on the
out-of-the-box thinking when it
may be perceived as a more
conservative approach to invest
in tried and true same
questions over and over.
FRAN VISCO: And
that's what happen.
ALANA WELM: But
that's where I think
that the community and advocate
partnership with research
can make a huge difference.
Because then, we can set the
agenda and the priorities of,
what is the most impactful
way to address this disease
and end it?
And maybe that's different
than the way we've normally
been funding research.
So I think that that's the kind
of thing we're looking for,
is this kind of
big thinking that
could make a big difference.
Not saying we have to stop the
science the way it's going,
but we have to do more.
AUDIENCE: I know we're
out of time, but maybe--
I don't know.
This is a quick question.
Just kind of
heartbroken to hear you
say that the treatment
hasn't really
materialized since you
were diagnosis in '89.
And for any of us women who've
had to have a mammogram or, god
forbid, a needle
biopsy, you sometimes
think, if a guy had
to go through this,
I think this would have changed.
I think this all the time.
And I'm just wondering if the
reason we haven't experienced
the change has anything
to do that this
is a women's,
predominately, issue,
or if it's really a
lack of the answers?
FRAN VISCO: I think that
it's a complicated disease
because it's in women.
And we have pretty complicated
bodies and biology.
I think that, yes,
for a long time,
women were not included in
clinical trials at the NCI,
because they were more
difficult to study.
There wasn't a lot of
funding in breast cancer.
But there wasn't a lot of
funding in prostate cancer
either.
And we really haven't come
much further in prostate cancer
as we have--
it's same almost
as breast cancer.
So it is-- yes, because it's in
women, for a number of reasons,
but not completely
because of that.
But I do want to say
one thing that there
have been some new therapies,
for example, Herceptin.
That's a therapy that is a
targeted therapy that-- we were
involved in the clinical
trials for that-- that
treats women who have HER2
over-expressed breast cancer.
And that's about 20%
of breast cancer.
Before Herceptin, that was the
most aggressive breast cancer.
Now, after Herceptin, it is one
of the least aggressive breast
cancers.
So it has proven to be
effective in the adjuv setting.
That's not in the
metastatic setting.
LAURA MILLER: Great.
Well, thank you so
much all for coming.
I really appreciate it.
And thank you for sharing your
minds with my Google family.
FRAN VISCO: And thank you,
Laura, for inviting us.
ALANA WELM: Yes, thank you.
FRAN VISCO: Thank you very much.
[APPLAUSE]
