My Life Matters - Fall 2021 - 18

The Power of One CLINICAL TRIALS
Interventions aiming to increase the participation rates of Black
women in cancer clinical trials must take into account the fact that the
target audience is made up of real and complex human beings. Black
women are not a monolith and being addressed as though we all have
the same experience can seem not only disingenuous but also very out
of touch with our realities. Real efforts must be made by clinical trial
sponsors and medical and research institutions in order to actually
recruit more racially and ethnically diverse groups to participate in
cancer clinical trials and to find better ways to meet their diverse needs.
Sharon Kidd shared about her experience on a trial: " I had a ton of
questions regarding the trial that I was getting prepared to join, specifically,
around how the drug affected young women and women of color.
I was told that I was the only WOC currently on the trial and the only
one under 45...since I was the first WOC on the trial, I made it a point
to over-share whenever my opinion was asked...WOC can educate and
advocate for themselves and other POC to ensure that we are changing
the narrative in our respective communities, which hopefully encourage
change on a societal level. "
Socioeconomic disadvantage is a barrier to clinical trial information,
access and participation. If many members of the Black community
receive care from institutions with fewer resources, then their oncologists
may not have the time or resources to search for and inform them
about clinical trial options. Consequently, Black women are invited to
participate in clinical trials at a much lower rate than their counterparts
of other races, regardless of whether they would actually be interested
in participating.
According to Sharon Kidd: " I was a patient of two Oncologists before
I was even spoken to about clinical trials as an option of care. When I
asked why, I was told 'they needed to exhaust all viable options before
introducing trials.' I pushed back and said 'I should be the person who
decides what is best for me.' WOC are not always given the opportunity
to make decisions. Our choices are taken from us because we simply do
not know what to ask or because others think they know what is best for
us, even if their decision(s) end in a fatality. "
In fact, 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. The researchers who conducted the review suggest making
sure that ethnic and racial minorities have access to trials as opposed
to changing their attitudes.1
SOURCES
is most often written in scientific jargon and difficult for patients and
their loved ones to understand without support.
Additionally, genetic testing is not always covered by insurance companies,
yet it is important for clinical trial eligibility. This potential extra
cost contributes to disparities. To overcome the financial barrier, some
companies offer financial assistance.
SOLUTIONS, ANYONE?
Soon after diagnosis, as part of the treatment decision process, clinical trial
options should be presented to women diagnosed with Metastatic Breast
Cancer and their caregivers. This is necessary to ensure that everyone is on
the same page and can discuss clinical trial options together. It is unlikely
that someone will participate in a clinical trial if they do not feel supported
by their oncologist, the clinical trial staff, or their loved ones. The diversity
of clinical trial staff is extremely important when maintaining trust with
racial/ethnic minorities; however, ultimately it is essential that patients feel
their health care practitioner truly cares about them.
Sharon Kidd explained that on her trial, " I was assigned a Clinical
Nurse Research Specialist and she was the best. She provided me with
lots of information regarding the trial drug. She connected me to others
who had started the trial before me to share experiences. It was a great
feeling to have someone practically hold my hand through the process. "
So how can we ensure that black women have access to the benefits
of clinical trials going forward? It will require not only patient self-advocacy
but also change within the medical community.
Megan-Claire Chase, Breast Cancer survivor and patient advocate,
has developed five recommendations for professionals to take action to
remedy trial inequities and gain the trust of Black patients. These are:
* SEE US- See the individual patient in front of you and put in effort
to learn their specific situation and needs.
* LISTEN TO US- Listen when Black patients talk about their concerns,
symptoms and perspectives.
* BE PRESENT WITH US- Patients can tell from their body language
when attending physicians are not present, this makes us feel dismissed.
* BELIEVE US- When Black patients talk about side effects and pain,
offer more than just BandAid solutions. Take the time and energy to
get to the bottom of the health issue.
Furthermore, clinical trial information
* AND THEN INCLUDE US- Include patients in their own healthcare
decision making by committing to seeing the patient, listening to
them, being truly present with them and believing them. l
1 Ren, Jin-Xiao et al. " Racial/ethnic differences in the outcomes of patients with metastatic breast cancer: contributions of demographic, socioeconomic, tumor and metastatic characteristics. "
Breast cancer research and treatment vol. 173,1 (2019): 225-237. doi:10.1007/s10549-018-4956-y
2 Reid, Sonya, et al. " Addressing Racial Disparities in Breast Cancer Clinical Trial Enrollment. " ASCO Daily News, 1 Apr. 2021, dailynews.ascopubs.org/do/10.1200/ADN.21.200499/full/.
3 Wendler, David et al. " Are racial and ethnic minorities less willing to participate in health research?. " PLoS medicine vol. 3,2 (2006): e19. doi:10.1371/journal.pmed.0030019
ABOUT THE AUTHOR:
KHAMAI SIMPSON, MSC. IS THE PATIENT ENGAGEMENT LEAD AT ANCORA.AI, A COMPANY
THAT HAS DEVELOPED A FREE CLINICAL TRIAL SEARCH TOOL FOR PATIENTS. SHE LEADS
PATIENT OUTREACH AND EDUCATIONAL CONTENT CREATION, TO MAKE SURE ANCORA.AI
CAN SUPPORT EVERY CANCER PATIENT WHO COULD BENEFIT FROM CLINICAL TRIALS. SHE
RECENTLY GRADUATED FROM CHARITE'S BERLIN SCHOOL OF PUBLIC HEALTH (LOCATED
IN ONE OF THE TOP 5 HOSPITALS IN THE WORLD) AND HER RESEARCH THERE FOCUSED
ON RACIAL DISCRIMINATION IN THE HEALTHCARE SYSTEM. SHE HOLDS BACHELORS
DEGREES IN GERMAN AND PUBLIC HEALTH FROM UNIVERSITY OF ROCHESTER AND INTENDS
TO CONTINUE TACKLING HEALTHCARE INEQUALITIES IN GERMANY AS WELL AS THE U. S.
THROUGH HER PROFESSIONAL EFFORTS.
18
MY LIFE MATTERS
FALL 2021

http://dailynews.ascopubs.org/do/10.1200/ADN.21.200499/full/ http://www.ANCORA.AI http://www.ANCORA.AI

My Life Matters - Fall 2021

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