My Life Matters - Fall 2021 - 17

CLINICAL TRIALS
WHAT'S THE PROBLEM?
For many of us, the COVID-19 pandemic has drawn our attention to
public health issues in new ways. Throughout the pandemic we have
been inundated with information about differences in incidence
rates and death rates for people belonging to different racial and
ethnic groups. Public health involves not only identifying inequalities
in health outcomes, but also being able to explore their origins
and why they persist.
After being diagnosed with Metastatic Breast Cancer, women
and members of their support system often begin to research the
disease. Statements from public health data such as these readily
come up in initial searches:
* Non-Hispanic Black women have a higher incidence and
mortality rate from Metastatic Breast Cancer than women
of other races living in the U.S.
* Black women are more likely to die from Breast Cancer
at any age.
* Racial differences in survival rates are greater for younger
women than older women, with non hispanic Black women
having a higher mortality rate at a younger age.1
* Black women are not participating in clinical trials at the
same rate as women of other races.2
Who is tasked with improving these onerous realities? How
do patients know if clinical trials are a viable option?
INFORMATION OVERLOAD!
For Black women with Metastatic Breast Cancer, these facts can
induce anxiety and pessimism. Am I going to simply be another
statistic? Do members of my healthcare team simply see me as
another statistic? What do I need to do to navigate through the
healthcare system and survive this disease?
I recently spoke with Sharon Kidd, a Black woman who is a
Triple Negative, AYA (adolescent and young adult) Breast Cancer
patient and an active advocate for marginalized populations. She
said of her trial experience:
" I was looking for successful survivor stories online; however,
most of the articles and resources were about fatal stats. "
Clinical trials should be introduced to patients as a treatment
The Power of One
to the fact that some of these therapies target cells that feature a
specific genetic mutation throughout any tissue in the body, making
these treatments effective for cancer that has metastasized.
Reasons for racial disparities in clinical trial participation are
usually explained as:
* The Black community distrusts the healthcare system
and clinical trials due to historical trauma (e.g., Tuskegee
studies).
* Lack of understanding when it comes to clinical trial information
and processes.
* Lower socioeconomic status among Black people relative
to white people, leading to things like higher obesity rates.
* Discrimination and racial bias in healthcare settings.
But is this the whole story? The reasons for trial disparities are
historically founded, and they have intertwined to the point that
it is difficult to see where one ends and another begins.
The very wording of articles explaining trial and health disparities
can imply that the Black community is at fault. Additionally,
when racial bias and medical racism are cited as the culprit behind
health disparities, it can also feel like there is nothing we
can do to change things. Encountering these explanations as a
patient can be confusing and disheartening. If the issue of racial
disparities in trials is simply identified without any suggestions
and commitment to fixing it, then population groups affected by
disparities are left facing harsh realities alone and indefinitely.
Sharon Kidd explained that from her experience: " I felt like
just another number with my former Oncologist, they did not
know who I was without looking at my chart... After reading all
of the negative stats and having an Oncologist who did not value
my life, I decided that I would advocate for myself and for Early
Detection, in addition to spreading awareness of Breast Cancer. "
HOW DOES CLINICAL
RESEARCH BENEFIT US?
The call for more racial diversity in clinical trials has been
especially urgent during the COVID-19 pandemic. Studying
a more diverse sample population allows researchers to identify
possible side effects, interactions, and complications that
" A literature review of 20 studies reporting on the decisions of over 70,000 people
showed that Black and Hispanic people are not less willing than non-Hispanic
White people to participate in clinical research. "
option as early as possible. Patients deserve to have all the information
available to them so that they are active participants in
their own healthcare. Clinical trials can provide access to new,
innovative treatments and high quality medical care. However,
some trials can only enroll patients who have never received any
other form of treatment. Failure to consider trials early enough
can lock people out from access. As advancements in precision
medicine continue, targeted treatments such as cell therapies can
be beneficial for Metastatic Breast Cancer patients. This is due
an intervention or medication may cause in specific population
groups. It is important to understand how medications need to
be used in different population groups to be safe and effective.
In cancer studies, the more information collected from people
across diverse backgrounds, the more prediction tools, screening
tools and targeted treatments can be directed to address the
entire population instead of only groups that usually participate
in research. This is why increasing diversity in clinical trial participation
benefits everyone.
MY LIFE MATTERS
FALL 2021
17
My Life Matters - Fall 2021

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