MY LIFE Matters - Advocacy in Action - 9

ADVOCACY IN ACTION The Power of Advocacy
expanders got infected, so I had surgery
to remove them.
My Mother died of MBC in 2004, and
five years later I was diagnosed. When my
Mom was diagnosed, I didn't know Black
women got breast cancer. I was living in
Okinawa, Japan, when my Mom told me
she was diagnosed with breast cancer.
I never knew Black women could get
breast cancer, the only Black person I knew
who had ever been diagnosed with breast
cancer was my Mom. It's important to talk
with your family about your health.
" Breast cancer affects Black women differently
as we are proportionally dying at
a faster rate due to many socioeconomic
factors that affect the Black community. All
women should be given the same standard
of care and the same treatment options once
diagnosed with breast cancer. "
Advocacy for Black women and advocacy
for metastatic breast cancer are all
different. When I was diagnosed, I didn't
know the statistics for the mortality rate of
Black women until I went to a conference
and was very disappointed with the statistics.
I really had no intention of being an
advocate until my breast surgeon sent me a
flyer about a symposium held in St. Louis,
Missouri. I went and was truly surprised
there were so many resources for breast
cancer patients. I was also disappointed
that there were not many Black women
there. I then went to get genetic testing,
which is important especially for women
like me who have a history of breast cancer.
Through my counselor, I found out about
Young Women's Breast Cancer program,
which is a support group. I started attending,
and it was one of the best support
groups I've ever attended. But again, there
were no other Black women that attended.
After going to my first conference with
my genetic counselor, I knew I wanted to
be an advocate. There weren't many Black
women, and my first question to myself
was how can I make sure Black women
are a part of important conferences and
conversations like these. That's where my
advocacy started, and I haven't looked
back. I am involved with many breast
cancer organizations to make sure Black
women are represented in all areas of the
breast cancer community. Advocacy is
an important part of my survivorship. I
have been living with MBC for 13 years
now, and I found a new purpose when I
retired from the military. I implore more
Black women to become advocates as the
Black community needs you. We need
your voice.
A few places I have used my voice in
advocacy include:
Tigerlily Foundation, MBC Alliance,
Our MBC Life, Susan G. Komen, Consumer
Grant reviewer for METAvivor
Research, DoD Breast Cancer Program,
National Institutes of Health, Komen
Missouri, Living Beyond Breast Cancer,
Touch the Black Breast Cancer Alliance,
Pfizer's A Story Half Told, The Patient
Center Dosing Initiative, The Biosimilars
Committee, Cancer Support Center, and
HealthGrades.
I decided to use my voice for the voiceless.
I decided to create my own lane and
my own causes to better the lives of Black
women and veterans who are diagnosed
with breast cancer. I feel it's important
for breast cancer patients to see advocates
out working to make lives better for all.
Decide how you see advocacy in your life.
It's important and it's worth it.
I enjoy attending conferences like the
San Antonio Breast Cancer Symposium
and the ESMO Conference in Berlin, Germany.
My first conference was with Living
Beyond Breast Cancer in 2012, and I was so
excited to be there. I was very disappointed
because I didn't see many women that
looked like me at the conference. That's
when I decided I needed to use my voice
to make sure Black women are invited
and know about all the conferences that
are taking place. Living Beyond Breast
Cancer helped me boost my advocacy to a
phenomenal level. That experience led me
to many opportunities, and that's when I
knew my platform would create change.
My platform is now getting more Black
women involved in clinical trials. I started
my first clinical trial in July 2018, and
" Dense breasts are
common in Black
women and in
military women.
Twenty to 40 percent
of military women
receive a breast
cancer diagnosis. "
I have started a new trial in August 2023.
My first trial stopped working so I had to
move onto something else. Progression is
always scary, but I do believe in research
and more women that look like me need
to ask questions about clinical trials. I also
do policy work with the National Breast
Cancer Coalition and Susan G Komen. I
am a Komen Scholar and on the Advocates
in Science Committee.
My advice to anyone who might be
thinking about advocacy is to take it slow.
Find your space in the breast cancer community
and go for it. Learn as much as
you can about advocacy and find a mentor.
Many organizations have mentoring
programs.
I believe stage IV advocacy is different
from early-stage advocacy. Stage IV advocacy
for me is all about research. We need
more money in research to help create
more effective and efficient treatments
with less toxicity so MBC patients like me
can live longer. l
Did you hear the news? CMS announced that it will maintain the codes for DIEP Flap reconstruction! The decision may be found
here, pages 83-87. This is advocacy in action, without the input and advocacy from the breast cancer community, this would not have
happened. It is a win for advocacy efforts, patient advocates, and other patient advocacy orgs! This is great news for patients!
MY LIFE MATTERS
ADVOCACY IN ACTION | FALL 2023
9
TIGER
TIP

https://www.cms.gov/files/document/2023-hcpcs-application-summary-biannual-1-2023-non-drug-and-non-biological-items-and-services.pdf

MY LIFE Matters - Advocacy in Action

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