MY LIFE Matters - Health Literacy - 33

ADVOCATING FOR CHANGE Health Literacy
which they can base decisions about their
health, and to find more acceptable options
for their children. I find the most challenging
aspect to be the development of new
strategies for cancer risk reduction, which
must be acceptable and at least delay breast
cancer development and allow for other
interventions like risk-reducing surgery to
be deferred until later in life. The BRCA-P
trial is the first major international effort
to provide a new non-surgical option for
cancer " interception, " and our teams are
proud and committed to seeing it through
and learning everything we possibly can
from it.
A PERSON-CENTERED
APPROACH TO SCIENCE
AND RESEARCH
One of the significant challenges in breast
cancer prevention is overcoming the fear
and uncertainty that often surrounds the
disease. We understand that individuals
may be apprehensive when joining clinical
trials for cancer prevention. To address this
apprehension, our team is committed to an
individual-centered approach that focuses
on building trust and providing a supportive
environment. Our team recognizes the
profound impact that empathy and personalized
care have on high-risk individuals.
By actively involving high-risk individuals
and their families in the research process
and considering their unique experiences
and needs, we foster an environment of
trust and collaboration. Our emphasis is on
the significance of shared decision-making
in creating a safe space where individuals
Breast Cancer
Prevention Study
Women with a BRCA1 mutation
have a 50-70% lifetime risk of
developing breast cancer.
The BRCA-P Study is an international research study for
women (ages 25 to 55) who are born with a mutation
(change) in one of their BRCA1 genes.
The study will be conducted at more than 30 research sites
across the United States. About 2,918 women from around
the world will participate in the study. We encourage
women of diverse backgrounds to participate in this study,
so that it fully represents all populations affected by
BRCA1 mutations.
If successful, our study can give future generations a
new option to reduce breast cancer risk without surgery.
Join us to help make a difference.
feel empowered to participate in studies and
trust the expertise of the team members.
INITIATIVES FOR BRCA1
MUTATION CARRIERS: BREAST
CANCER PREVENTION
(BRCA-P) STUDY
Women with a BRCA1 mutation have a
50-70 percent lifetime risk of developing
breast cancer. The BRCA-P Study is testing a
possible new way to reduce the risk of breast
cancer in women with BRCA1 mutations.
The BRCA-P Study is an international
research study for women who are born
with a mutation (change) in one of their
BRCA1 genes. The main purpose is to
learn whether the study medication,
denosumab, can decrease the risk of
developing breast cancer compared to a
placebo (inactive substance) in women
with a BRCA1 gene mutation. Currently,
removal of both breasts by surgery (mastectomy)
is the only effective way to reduce
the risk of breast cancer in women with a
BRCA1 mutation. Such surgery can have
both physical and emotional impacts. If
successful, our study could provide a new
option to reduce breast cancer risk without
surgery for women and their families.
The usual approach for women who are
not in a research study is to be followed
closely by their doctor to watch for the
development of breast cancer. Most recommendations
include having an annual
breast MRI, alternating with an annual
mammogram about six months apart.
While this approach does not actually
reduce the risk of breast cancer, it can
help to detect breast cancer in an early
stage when it is most curable. Women
in the BRCA-P trial will continue their
careful screening in addition to receiving
the study medication (or placebo) every
six months for five years.
The BRCA-P Study is conducted in the
United States by the Alliance for Clinical
Trials in Oncology, a national clinical research
group supported by the National
Cancer Institute (NCI). In the United
States, the trial is co-led by a breast cancer
and cancer genetics expert, Dr. Judy
Garber from the Dana-Farber Cancer
Institute and Dr. Judith Hopkins from the
Alliance. This study is supported by the
Department of Defense, the National Cancer
Institute, Amgen, the manufacturer of
Denosumab, the Breast Cancer Research
Foundation, and the Gray Foundation.
You can learn more about the study by
visiting www.brcapstudy.org.
PASSIONATE ADVOCATES FOR
HEALTH LITERACY, PATIENT
ENGAGEMENT, INCLUSIVITY,
AND DIVERSITY
Passionate individuals on our team, as well
as colleagues across the U.S., play pivotal
roles in improving health literacy, promoting
participant engagement, inclusivity, and
diversity. Their efforts range from educational
campaigns and outreach programs
to initiatives that enhance communication
and promote inclusivity. By working
together with these passionate advocates,
we hope to ensure that the BRCA-P trial is
offered to diverse communities, reflecting
our commitment to fostering a supportive
and inclusive environment.
Breast cancer prevention necessitates
a belief in the promise of the future
and a willingness to try something new
without a guarantee of success. The dedication
of passionate advocates, like Eva
and others, further enhances the impact
of these efforts. Together, these elements
contribute to life-changing breakthroughs
in cancer prevention research
and care, ultimately providing the most
advanced treatments available. With continued
dedication and collaboration, we
can move closer to a future where there
are options for breast cancer prevention
beyond surgery that can be matched to
the needs of each individual. l
MY LIFE MATTERS
HEALTH LITERACY ISSUE | SUMMER 2023
33
http://www.brcapstudy.org http://brcapstudy.org
MY LIFE Matters - Health Literacy

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