MY LIFE Matters - 15


Metastatic and Black


y now, we should all be aware that Black women are diagnosed with breast cancer at later stages and experience higher mortality rates than white women. Black women are also two times more likely than white
women to be diagnosed with Triple Negative Breast Cancer (TNBC), a sub-type that is considered aggressive and that is more likely to result in recurrences. TNBC has the highest mortality rate and does not have
a treatment therapy known to prevent relapses.
Directly impacting such statistics, despite increased "breast cancer awareness," is systemic racism, lack of access
to high-quality healthcare, genetic differences, and more...

The need for allyship in breast cancer services, advocacy, and research and a push toward that goal was brought to light
and illuminated by two white women, themselves living with the disease.
"We have always seen ourselves as allies to people of color and thought it was unacceptable that certain population groups experience disparities in cancer outcomes. We decided that 'not being ok' with something this terrible wasn't enough! We had to act," said Julia Maues and Christine Hodgdon, Co-Founders of GRASP (Guiding
Researchers & Advocates to Scientific Partnerships) and two white women living with MBC.
Our white allies are starting to come forward, pledging to stand with us in starting the conversations that need
to be had and in helping us save the lives of African-Americans with metastatic Breast Cancer.

Q: What is your full diagnosis?
A: Stage IV Metastatic Breast Cancer, ER/P+, HER2-, ATM+
Q: "Black women have a 40% higher mortality
rate than white women." What impact does this
statistic have on you?
A: It breaks my heart. No one should have to deal with a
higher mortality rate just because of the color of their skin.
Since my husband is a dark skinned Jamaican, we have the
plethora of mixes and colors in our extended family and my
children are brown skinned. That makes the racial issues
more personal for me since when we talk about black women,
we are talking about my family. While I think it shouldn't take
a personal connection to make an issue resonate more, when
it is your family it does matter more. We need to understand
why there are disparities and then end them.
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: Yes, I have friends in the MBC community and early
stage community who are Black. One thing I have learned
from being in a very mixed family is that race and racial
disparities are topics that should be discussed openly and
often. I regularly ask my friends who are of different races
what makes their experience different and compare my own
advocacy experiences with theirs. Just like men and women
exhibiting the same behavior are described differently, so
are white women versus black women. Every time I can,
I address the different outcomes, the different treatment,
the automatic judgments. Whenever I am asked (and I
regularly offer), I attend meetings or appointments with
my fellow MBC-havers. Sometimes having another person
in the room gets the providers to think twice. Sometimes,
asking the question in a discussion about whether the treatment would be different if the patient was of a different race
exposes the underlying racism. Sometimes it's too hard.
My husband regularly worries that I won't get good treatment because of how vocal and open I am about my own
needs and advocacy for others. This is a reaction that we've
discussed often and that I ask my friends about regularly.
We have to be able to ask for what we need no matter who
we are or what color our skin is.



MY LIFE Matters

Table of Contents for the Digital Edition of MY LIFE Matters

MY LIFE Matters - Cover1
MY LIFE Matters - Cover2
MY LIFE Matters - 1
MY LIFE Matters - Contents
MY LIFE Matters - 3
MY LIFE Matters - 4
MY LIFE Matters - 5
MY LIFE Matters - 6
MY LIFE Matters - 7
MY LIFE Matters - 8
MY LIFE Matters - 9
MY LIFE Matters - 10
MY LIFE Matters - 11
MY LIFE Matters - 12
MY LIFE Matters - 13
MY LIFE Matters - 14
MY LIFE Matters - 15
MY LIFE Matters - 16
MY LIFE Matters - 17
MY LIFE Matters - 18
MY LIFE Matters - 19
MY LIFE Matters - 20
MY LIFE Matters - Cover4