MY LIFE Matters - 17

connected to the people in power. I use this connection, this
opportunity as a place where I can effect change. Additionally,
when I am at a table where there are only white people, I point
it out. I notice because that is part of my husband's experience
as a black man and I have learned to look at things through
his eyes a little.
Q: Do you support the black breastie community?
If so, in what ways?
A: Definitely. By sharing and elevating the stories of the black
men and women in the breastie community and by ensuring
that they are connected to the people I know in power.
How can other non-black people get involved with ending
systemic barriers for black women and reduce the mortality
rate for black women with breast cancer today?
I think the first thing is to acknowledge that there are barriers, that there is a mortality disparity. Like any problem,
acknowledging that it exists is the first step. This first step
has to involve gathering data and counting those in the black
community. The second thing is to commit to sharing our
opportunities. I welcome the Tigerlily Foundation's pledge
for those of us in advocacy, to not accept opportunities that
don't also include black men and women. In fact, during

Q: What is your full diagnosis?
A: Metastatic Breast Cancer; IDC, ER+/ESR1mu/
BRCA2; Mets to Bone, Lung, Liver and Brain
Q: "Black women have a 40% higher mortality rate than white women." What impact
does this statistic have on you?
A: First, I feel like the first question as someone who
wants to tie action to a problem is "why?", and what
can we do about it. Part of me with a background in
sociology wants to wonder what is influencing this - is
it access? Is it socialized attitudes to health? Is it distrust
against medical professionals and trials? Is it the fact we
see more triple negative disease in Black women? The
fact is we don't know. It could be some, or maybe a bit of
all of these factors. We need medical sociology, epidemiology, and medical studies to work together to look
at the entire landscape rather than just hypothesizing.
Without scientific answers, nothing is going to change.

Metastatic and Black

the Metavivor Stampede, I told every congressional health
staffer we talked to in Florida about the disparities and
sent them the link to take the pledge. The third thing is to
keep bringing it up. The efforts to address disparities can't
stop with words and promises, it has to include action and
a commitment to keeping bringing up the issues until they
are addressed. I think part of this piece is to connect with
key leaders in the black community who have influence over
their community. Without black men and women feeling
safe, they won't participate in trials, they won't follow up
with doctors and they will continue to be seen differently because of how the systemic racism has affected them
personally and as a community; the only way the white
people can understand what would make an individual or
a community to feel safe is to ask and then listen. Lastly, I
think we all need to always be open to learning from others
and to keep on doing better as we know more. There is no
one size fits all in breast cancer. There is no one size fits
all in addressing disparities. There is no one size fits all in
seeking justice.
What I can commit to, is that this will be front and center
for me so long as I am able to be a patient advocate in the
MBC community.

Q: Do you have black MBC friends? If so, what
type of conversations have you had to better understand their experience as a black MBC thriver?
A: So I feel like asking if I have black friends is a bullshit
question because whether or not someone has a black friend
doesn't mean they can't be a good human and want the best
for a community. Also on the reverse side - having a black
friend doesn't mean someone is automatically not racist or
doesn't have prejudice thinking. Merely having a black friend
(or many) should never be a test if someone is supportive of
Black people. Plenty of people that "have a black friend" have
used that as an excuse for racist behavior like it's some type
of free pass to say inappropriate things or feel like they aren't
"really" racist because they know a black person. Being a good
human has so much more tied to it than just the skin color of
your friends - it's how you think and treat people when you're
away from people who are different than you. While I have
friends on the National Advocacy level who have experienced
barriers - locally the one person I'm close enough to that I feel
comfortable asking those personal questions has not due to her
healthcare through the military. Now, I will say my Latina and



MY LIFE Matters

Table of Contents for the Digital Edition of MY LIFE Matters

MY LIFE Matters - Cover1
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MY LIFE Matters - 1
MY LIFE Matters - Contents
MY LIFE Matters - 3
MY LIFE Matters - 4
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MY LIFE Matters - Cover4