“Clinical trials are the gateways to unraveling the mysteries of diseases like cancer and discovering groundbreaking treatments,” says Dr. Amanda Lawson, a renowned oncologist. These trials, the culmination of years of meticulous research, provide a unique opportunity to explore and test promising new therapies in real-life scenarios.
Historically, current breast cancer treatments owe their effectiveness to clinical trials. Countless women have reaped the benefits of participating in these trials, with lives improved, prolonged, and even saved. However, a troubling disparity persists, particularly among People of Color, who face significant barriers when it comes to accessing healthcare and participating in clinical trials.
A significant underrepresentation of Black individuals is observed in clinical trials, especially those focused on cancer research. Curiously, the United States reports higher rates of several types of cancer and an increased mortality rate for Black people, raising questions about the potential link between low clinical trial participation and these alarming statistics.
Numerous factors contribute to the lack of diversity observed in clinical trials, necessitating comprehensive changes across multiple levels to rectify the situation. In the case of breast cancer clinical trials, specific barriers hinder Black women from becoming participants. To shed light on this issue, we will examine the statistical disparities and explore the challenges faced by Black women seeking to participate in breast cancer clinical trials.
Statistical Snapshot: Unveiling Disparities in Clinical Trials
Although the past decade has witnessed the approval of numerous oral anticancer medications, the trials conducted suffer from a severe lack of diversity, failing to accurately represent the populations that could potentially benefit the most from the research outcomes. Alarmingly, the underrepresentation of People of Color, particularly Black individuals, is glaringly evident. In 2019, only 9% of all clinical trial participants were Black, according to a trusted source. When focusing on cancer clinical trials, the number of Black participants dwindles further.
Comparing these statistics to the 2021 U.S. Census data, Black people constitute 13.6% of the population. What is more striking is the higher incidence of various types of cancer among Black individuals when compared to their white counterparts:
- Rates of prostate and colon cancer, as well as death rates, are significantly higher in Black people.
- Breast cancer, although diagnosed more frequently in white women, claims more lives among Black women.
- Triple-negative breast cancer (TNBC) diagnosis is twice as likely in Black women compared to non-Hispanic white women.
Understanding Triple-Negative Breast Cancer (TNBC)
TNBC refers to a type of breast cancer where cancer cells lack estrogen, progesterone, and HER2 receptors. Typically diagnosed at later stages when treatment options are limited, TNBC patients may find potential access to life-saving treatments through participation in clinical trials.
Why are Black Women Underrepresented in Breast Cancer Clinical Trials?
The journey to becoming a clinical trial participant begins with awareness. Sadly, many women with breast cancer are unaware of the existence of clinical trial options. The uneven distribution of knowledge about clinical trials among healthcare professionals exacerbates this issue. When battling cancer and overwhelmed by its toll, patients may be less inclined to actively seek out trials. Therefore, having a healthcare professional inform them about potential trials significantly increases the likelihood of considering participation.
Location plays a pivotal role as well. Clinical trials are predominantly conducted in large cancer centers, often affiliated with universities. Unfortunately, Black individuals in the United States are less likely to receive care from these specialized centers. Smaller local sites lack the resources to conduct trials, and the added burden of traveling to distant cities for participation can be insurmountable in terms of costs and time commitments.
Financial barriers pose substantial challenges to clinical trial participation. While the actual treatment costs are typically covered, ancillary expenses such as travel, parking, time off work, and childcare remain significant obstacles. These financial burdens disproportionately affect individuals with lower incomes, making it even more challenging for People of Color to take part in clinical trials. The American Cancer Society’s 2022 Cancer Facts and Figures report reveals that 20% of Black people live below the poverty line, compared to 8% of white and Asian people in the United States. Thus, lower income levels further compound the barriers faced by People of Color.
Exclusion criteria also play a role in limiting the participation of Black women in breast cancer clinical trials. While these criteria are crucial for well-designed trials, their stringent nature can inadvertently exclude individuals who could potentially benefit from the trial. For instance, unmanaged high blood pressure or diabetes are common exclusion criteria. Considering that the rates of these conditions are higher among Black individuals than white individuals in the United States, such criteria disproportionately hinder the participation of Black women.
Moreover, medical mistrust among Black communities presents a significant barrier to clinical trial participation. Higher levels of mistrust exist among Black individuals compared to their white counterparts, leading to hesitancy in engaging with clinical trials. This mistrust extends to healthcare visits in general and negatively impacts overall well-being. Overcoming this mistrust requires concerted efforts to build trust and foster open communication between healthcare professionals and communities of color.
Another factor contributing to limited diversity in clinical trials is the fixed number of available spots for participants. With limited openings, the number of individuals involved is inherently restricted, further exacerbating the underrepresentation of certain populations.
The Significance of Diversity in Breast Cancer Research
The importance of diversity in clinical trials cannot be overstated. The inclusion of a diverse population within the study sample enhances the meaningfulness and applicability of the results. Genetic variations among individuals from different backgrounds provide valuable insights into how treatments may work across diverse populations. Consequently, clinical trials serve not only the participants but also the broader community by generating knowledge that can guide improved healthcare practices.
Clinical trials encompass various stages and types of cancer, offering opportunities for patients at different points in their cancer journey. Participation in these trials can extend lives, improve quality of life, and contribute to the advancement of medical knowledge. Equal access to clinical trials is a fundamental right that should be extended to everyone, regardless of race or ethnicity.
Improving Access to Breast Cancer Clinical Trials
Addressing the disparities in breast cancer clinical trial participation necessitates comprehensive changes. The journey begins with fostering better communication between healthcare professionals and People of Color. Healthcare workers must acknowledge and understand the pervasive impact of racism and trauma on patient care. By actively disseminating information about clinical trials and engaging in open dialogues, healthcare professionals can empower patients with knowledge and ensure they have equal opportunities to participate.
Patients themselves play an active role in seeking out clinical trial opportunities. Instead of waiting for their doctors to mention clinical trials, individuals interested in participating should proactively inquire about available trials. Some doctors may be unaware of current trials or may overlook them during consultations. Empowering patients to advocate for themselves can bridge this information gap.
In addition to seeking information from healthcare professionals, support groups provide valuable platforms for patients to learn about clinical trials and seek advice from others who have either participated or are considering participation. Engaging in open discussions and asking questions helps individuals feel more informed and confident in their decision-making process.