Edited by Jesutomi Akomolafe
Introduction
AT the March on Washington on August 28, 1963 when Rev. Dr. Martin Luther King, Jr., delivered this iconic ‘I Have a Dream’ speech, no one would have thought that 59 years after, his dream of not being judged by the color of one’s skin will not be a reflection of our reality in all strata, including our healthcare system as it relates to the level of medical attention received by African American.
This was the same concern addressed at the Black Women Speak forum during the 46th San Antonio Breast Cancer Symposium.
Within the last five (5) decades, certainly, there is no gainsaying that black women have witnessed some level of improvements in health. However, there have been some levels of disparities that have continued to marginalize African American women with breast cancer. This was stretched and evaluated at the SABCS in December by different patient/advocates, from the point of being denied access to doctor’s appointments, to hoarding of information about clinical trials down to treatment and medical attention to patients’ basic questions.
At the concluded 46th SABCS, Touch, The Black Breast Cancer Alliance in one of the sessions revealed that black women diagnosed with breast cancer die at a 41% higher rate than white women. The group further stated that since 1990, breast cancer has decreased by 40 % in white women but by 26 % in Black women.
However, we cannot categorically tie the structural inequality that exists in the health system to the current crisis to the above statistics. But in this report, I share the knowledge gained from SABCS symposium especially as it relates to structural contributors to a decline in black women involvement in clinical trials, issues seeking medical attention & advice with basic treatment options from the standpoint of black patients’ experiences.
Founder of Trials of Color & Saving Pennies 4 A Cure. Sharon Rivera Sanchez (right) and a breast cancer advocate at the 46th SABCS
Only about 4.5% of African Americans have been involved in clinical trials since 2006
Let me say the San Antonio Breast Cancer symposium lived up to its expectations. While it serves as a reinforcement of knowledge gained in the past, it also provides me other exposures when it comes to data in clinical trials that will help me in my advocacy journey.
While this may be novel to some advocates and residents in the United States, what interest me and I believe would be new to some oncologists, patients and other advocates is that, within the last 16 years, about 4.5% of African Americans have been involved in clinical trials compared to its other counterparts who make up 96% in clinical trials.
The percentage of black involvement in clinical trials is no longer news to me, but what is now a major concern and should call for urgent redress is that despite millions of dollars earmarked by pharmaceutical companies every year for research into development of new treatment for breast cancer, less than 5% of African Americans have made it for trials consistently for 16 years.
One would have thought the numbers would have increased with essence to clinical research into breast cancer cure that would be inclusive. Although this may remain the core mission of pharmaceutical companies however, in practice black women within the last 20 years have also continued to fight for equal and better healthcare treatment.
In the report by Touch, The Black Breast Cancer Alliance click here and Breast Cancer organization here at the SABCS conference tagged “When We Trial- Know The Facts” revealed that though incidence rates are about the same, Black Women diagnosed of Breast Cancer die at a 41% higher rates than white women. In my own opinion, this is a resounding number to account for an equal representation of race in clinical trials.
African American women Are not Being Asked To Participate in Clinical Trials
As a seven years Triple Negative Breast Cancer survivor and a patient advocate, I have heard patients confide in me that doctors do not educate them on clinical trials.
This was another area that the Touch, The Black Breast Cancer Alliance here and Breast Cancer organization here addressed at the conference. During the interactive session, as we share our experiences, we validated our existing views that white doctors do not talk to black patients about clinical trials.
One day my organization, Trials of Color/ Saving Pennies 4 A Cure went into different hospitals to provide patients going through chemotherapy blankets. Some of the patients shared with me they have never heard about the phrase “clinical trial”. Without a doubt, it is also a major threat accounting for a decline in the numbers of black’s participation in clinical trials.
During the session, there was a concern that doctors may not have enough time to educate patients about clinical trials. However, there should be deliberate steps in creating such awareness. The place of trained patient advocates who understands the science and language should not be overlooked. White and black doctors can work in sync with patients’ advocates to carry out the educational role. Also, timing is a virtue that must be employed when speaking with patients. Breast cancer or chemotherapy is never a good feeling and would never be. It leaves a lot of patients with adverse effects on their mental and psychological state. Hence, understanding the patients and knowing when to address the patient on the subject
Black Patients Do not Get their Basic Questions Answered
Extant research has shown that medical practitioners have the beliefs that blacks and whites are fundamentally and biologically different and this has been prevalent in various ways medical practitioners relate with African American patients currently. In the United States, African American constantly complained how difficult it is to get basic medical questions answered, especially blacks from underserved communities.
Questions like:
- Can my breast be removed to kill the cancer?
- What do you mean the cancer can come back?
- Are there any other options?
- Do I have to take chemotherapy?
These and many more make a lot of patients become Google scholars. Some have resorted to finding answers on Google where no definite or proper answers are found. This could lead to death of patients before the actual demise.
During one of my conversation with some breast cancer patients, I observed that some patients had to go through false notions and pretense to secure doctor’s appointment just to have some of their basic questions addressed.
Strategies for underserved communities in Petersburg
The question that may probably be in the minds of any African Americans would be “how did we get here? In the first place, such disparity should never occur not to think of the difficulty in securing appointments with medical personnel.
We at Saving Pennies 4 A Cure/ Trials of Color understand the damage disparity in healthcare system caused on African American women with breast cancer and this does not only create distrust but may reduce the survival rate of patients who African America women.
In Richmond, are mission is “Booth on The Grand” which includes physical sensitization and the use of social media platform to enlighten residents, patients educate them on their right and on clinical trials. We constantly ensuring that we become a nexus for patients and their healthcare providers at the grass root level.
In one of the researches by Pew Research Center published on April 7, 2022 by Cary Funk on “Black Americans’ views about health disparities, experiences with health care” reveals that, 56% say they’ve had at least one of several negative experiences, including having to speak up to get the proper care and being treated with less respect than other patients.
The SABCS exposes a lot. For instance, there were no oncologists present during the session
“Black Wo(men) Speak”. They were not part of the discussion, meanwhile they play major role in breast cancer.
Conclusion
2022 SABCS conference was different; there were more African Americans speakers, speaking on behalf of black women compared to 2019. There is no doubt that all hands must be on deck to push for long-term change to meet the needs of all Americans including African American women living with breast cancer. This knowledge and experiences from the 46th San Antonio Breast Cancer Symposium is what I am taking back to my community and contributing to the knowledge gap while continue to being a voice for the voiceless in Richmond. I will take the message to the various Boards on which I serve by establishing a virtual forum where issues concerning breast cancer treatment involving African American women can be discussed.